Ristau Family

Re-Cap of Dr. Appointment

2011-07-22T08:04:00.003-05:00

Yesterday's appointment went well. Leah's AFP is 2.o and we shouldn't need to go back to oncology for an entire YEAR! That was the good news. The bad news is that we are being referred on to endocrinology. Part of that was anticipated because of Leah's slow growth. However, that is not the only reason we are being referred on. Leah's thyroid number was not in the normal range. Dr. O was not extremely alarmed, but said because there are now two concerns we should get this looked at. While I very much agree and don't want to overlook anything, it would have been wonderful to leave knowing we weren't going to go back for a year. But we will take the AFP and be happy for now. By the time we arrived home they had already called to schedule an endo. appointment. I thought perhaps the level of concern was greater by their department than our doctor had indicated if they already called so quickly, but it isn't. Leah's appointment is on November 7. That is the first time we could get in. Yesterday Leah had her hearing checked - something they do every two years. Her hearing is remaining stable. She still has high frequency hearing loss, something Leah will argue with you about since she can hear just fine, in her opinion.

Shopping consisted only of Prairie Lights bookstore and the consignment shop in Marion. Sometimes we don't have much luck there, but yesterday Leah found several things calling her name for fall and has a nice little stack to add to her closet. Both of us were rather tired last night, but my mom finished off a flannel quilt for the girls' daycare provider (we are now done with daycare after six and a half years at the same provider - Reeve will be attending a Pre-K program at the elementary school this fall) so we went to her house to finish clipping the quilt squares and then delivered the quilt to Karen. I hope she knows how much we appreciate every single minute she spent with the girls.

Thanks for checking in. As Leah's next appointment draws closer on the calendar, I will update again. We continue to appreciate your prayers and thoughts for Leah's complete healing.

Mid-Year Update

2011-07-06T18:55:00.005-05:00

I can hardly believe that half of 2011 is over with already! It is finally feeling like summer here in Iowa and I have been enjoying taking the girls to the pool nearly every day. We have already had our vacation - a trip to Colorado with my mother. Highlights include eating at Casa Bonita, visiting the Royal Gorge Bridge, and seeing my uncle Loren at his place in Southern Colorado. The girls are enjoying a long summer break this year. The elementary school in Denver is having construction done on it so that all K-12 students will be at one campus. That means the students were out of school in May and don't go back to school until August 29 (Reeve's 5th birthday). Unfortunately I have to return to school on August 3, and summer is really more than half over for me.
On July 21 we will be taking Leah for a check-up in Iowa City. I have been just trying to block this out of my mind and would really rather not go, but don't have much choice. I am praying for a very normal, boring check-up and a very low AFP. Leah is not much interested in going, either, and stomped off when I told her that there was a check-up coming up. On the same day we found out when Leah's appointment was scheduled we heard of another family now in a similar situation to ours five years ago. Their four year old daughter was diagnosed just that morning with a Stage IV neuroblastoma. While Leah's type of cancer was hepatoblastoma, we certainly know too well how horrible it is to hear the diagnosis. Although we made some wonderful friends in Iowa City and appreciate all the care and skill there, it is not an experience we wish on anybody. We are continuing to pray for Lily Grace and her family as they begin their own cancer journey.

I know most people do not check this blog frequently anymore. Life has been very normal for us for a long time, and we pray that it continues to go that way. We are so grateful for the thoughts and prayers of others who continue to remember Leah. While some people may take their health for granted, there is not a day that goes by that we don't remember what it was like to want nothing more than a healthy child.

My next post will likely be after our check-up. Any extra prayers for Leah's continued health are much appreciated.

All's Well

2011-01-20T15:47:00.004-06:00

AFP - 2.8

So, the AFP is up a little again. They- Leah's doctor and the PA there- are most definitely not worried. This time I haven't been as worked up when I see the number 2.8. Yes, I would like it to be lower. But, all her other labs were fabulous. Both her platelets and hemoglobin were higher than the last time. Her echocardiogram they do to monitor her heart function was also good. We don't have to go back for six more months.

The weather cooperated today, with the only not-so-good driving occurring during the last 30 minutes of the trip when I got off the interstate and took country roads/highways back to Denver. It is blowing quite nicely right now. We shopped a bit and ate lunch at the Olive Garden. Now we are all home and since there are a few people who haven't had enough sleep we might soon be spending some quiet time in our bedrooms.

Dance Marathon is just a few weeks away. This will be our sixth one! I'm not sure if I should be excited about that, but the girls LOVE it. Leah is also attending a music camp on a Saturday in February at Wartburg College. Just yesterday she started the SOAR program at school, which is an enrichment program that meets once a week. There focus is on architecture so she has been busy telling me all about the Eiffel Tower.

The bridal show on Sunday was fun. There was a lot of waiting around, so I am not sure if Leah is wanting to do this again, but it was a new experience for her. The pictures I'm posting are from that. I think her hair looks beautiful.

Hopefully life will continue to be boring and normal. I can hardly wait for spring! Thanks for checking in and continuing to keep Leah in your prayers.

January 15, 2011

2011-01-15T17:24:00.002-06:00

How can six months possibly fly by so quickly? Leah is scheduled for her check-up this Thursday. In addition to her blood draw, she will also have an EKG, which is a routine procedure every couple of years. I broke the bad news about an Iowa City visit a while ago, but Leah must have forgotten because today when I told her about Thursday she was most definitely not very happy. Things appear to be fine, but I am starting to get worried. I would like to think that at 4 1/2 years out I could breathe easy, but I don't think that's possible. And right now life seems so busy that it seems hard to even sit and think about cancer and treatment for too long. This time of year is when Leah was undergoing treatment five years ago, so there are certain memories that are triggered just because we went through all of this in the winter.
Tomorrow Leah is modeling in a bridal show in Waterloo. She was asked to do this along with other Make A Wish children. While Leah doesn't really enjoy being the center of attention and had to be coerced to do this, Chloe was wishing she would have been asked. Pretty much all of tomorrow will be taken up with dress rehearsal, hair appointment and the actual show. I hope I can get some good pictures of her.
While I no longer update this site very frequently, I will try to post pictures and I will definitely update after Thursday's appointment. Thanks for checking in and your continued prayers.

July 8, 2010

2010-07-08T14:44:00.002-05:00

AFP = 1.6
Whew! Today's appointment was no less nerve-wracking than any other one. I would have thought that at this point I would be more relaxed for these check-ups, but it doesn't seem to work that way. Leah is also liking our getaways less and less, and is viewing these hospital visits as a rather large annoyance. She insisted several times that she would not be going to Iowa City today, but lo and behold, she did get in the van this morning with me.
All of Leah's bloodwork looks good, and in typical fashion every result was back in except for the AFP - the one number I really need to know to put my mind at ease. We hung around after the appointment waiting for that number and then were quite happy to hear the new level. We won't be going back until January 2011 now. I think I will enjoy not having to go as frequently! And, as of last month we have now reached the four year milestone for Leah being off treatment.

I guess the thrill of shopping after the appointments has worn off. We did hit Prairie Lights Bookstore and the mall very briefly, but were home by 1:00, perhaps the earliest ever. That was fine with me - I am exhausted.

Even though it is July, I now feel like I can start enjoying summer. We hope to visit The Falls Water Park many more times, and perhaps can even fit in a vacation of some sort. Discussions are underway to figure this out.

Thanks for checking in on us and for the continued prayers for Leah.

July 3, 2010

2010-07-03T08:51:00.002-05:00

Oh, how time does fly! The Fourth of July weekend makes me realize school is just around the corner...and I feel like I have hardly been out of school yet. We also have been to the pool very few times, or done much of anything else. Leah's next appointment is this upcoming Thursday, July 8. Ugh. That is what I have to say about it. It would be lovely to just know things will be great before even going to the appointment, but despite how wonderful she looks on the outside, there is always that fear that something will be discovered. So, we are praying for a boring appointment, a low low AFP, high platelets and hemoglobin and a bit of growth.
Leah does look great....she finished up her T-ball (or whatever it is when it is machine pitched) season last week. She and Chloe and now Reeve, too, are taking gymnastics. Leah is taking piano lessons which Chloe will probably start at some point this year, too. Both Leah and Chloe found out who their teacher will be next year and are excited about that. Reeve alternates between excitement about preschool and telling us that she's not going. Could be interesting. We are truly in our summer routine - late bedtimes and late mornings. I am not so sure Chris enjoys this because he is the only person who has to get up in the morning and get to work.
Today we have my nephew's third birthday party and on Monday we will be going to Des Moines for a Tuesday at Adventureland.
I will update after our appointment on Thursday...thanks for checking in and the prayers for Leah's continued good health and healing here on earth.

March 4, 2010

2010-03-04T19:58:00.003-06:00

Well, we did keep Leah's appointment. Dr. Radhi even called me on Monday morning after I emailed him twice asking him his advice. The AFP this month is 2.5.....still well within the normal range, but up a bit. No one in Iowa City is worried, but of course as Leah's mom, I would like the AFP to decrease every single month (which technically isn't possible). It has been 2.5 before, but not for a while. I guess we are hoping this is a growth spurt and nothing more. She has been off treatment for almost four years now, and each and every day we are thankful for her great health. We will continue to pray that her next AFP is lower again so we can breathe a little easier. Her platelets were up a bit, which is what we wanted, as was her hemoglobin - this was not surprising, either, since she has been very full of energy lately. Leah is now 3 ft 9 and a half...it would be great if she could have a little growth spurt.
Shopping and lunch at Hu Hot were on the agenda today, but we arrived home earlier than normal, which was kind of nice. We were both very tired and this way we were able to pick up Chloe from school. Tonight we need to be working on bedtime, but I promised the girls we would watch an episode of Home Improvement before we call it a night. They are waiting (im)patiently for me to be done posting, so I better call it a day.
Thanks for checking in, and all of your prayers. We continue to pray for Leah's complete healing here on earth.

Upcoming Appointment

2010-03-01T05:59:00.002-06:00

Last Monday I received Leah's appointment notification in the mail. I knew that we would be returning to Iowa City in March, but thought it was going to be towards the end of the month. I was not mentally prepared for seeing the envelope from the University of Iowa Hospitals and Clinics and have been toying with the idea of putting off her check-up for a few weeks. Dr. Radhi left it up to me as to whether we should see him every four or six months. I chose four months; six months seems too long in between appointments, but this appointment is not even quite four months from her last. Obviously I need to make a decision within the next day or two. Leah has let it be known that she does NOT want to go to Iowa City this Thursday, either. I emailed Dr. Radhi to get his input, but he was out of the office last week, so I will have to see if he replies today.
Maybe a check-up seems like no big deal - Leah does look good and seems to feel just fine, yet the idea of some unknown lurking in her body is always there. Even driving through the hospital parking lot during Dance Marathon almost made me sick to my stomach. The longer we are away from that life, the less we want to go back. So, these checkups are a big deal to me. Each one buys us X number of days of living in the real world, not the cancer world.
And we have been enjoying the real world. Chris has been helping with the little kids wrestling program and also the high school wrestling program. I have been doing some after school tutoring that has meant extra hours several times a week. Leah has piano lessons and both girls have gymnastics. They also attend midweek at the Baptist church. Reeve is going to story hour at the library on Thursday nights, and getting ready to start gymnastics herself. We are anxiously awaiting the arrival of spring and hoping for no more snow days this year.
Thank you for checking in on us and all of your prayers. I will update later this week about Leahs' appointment -if we have had it, or when we have rescheduled it.

Mid-winter Update

2010-01-18T18:35:00.002-06:00

I can't believe it is 2010 already! Things are going well here. We are happy to be busy, even though sometimes I feel like spending a night at home is a rare occasion. We are gearing up to attend Dance Marathon at the beginning of February. Right now I don't even know for sure when Leah's next appointment is.
I don't do a very good job of updating on this site besides during appointment times. However, Leah has two different blogs she has been working on. The first one is a blog where she and a friend review books they read. The address is:www.readingfever.blogspot.com.
The other night Chloe was wishing she could have a blog, too, so they decided they should have a sisters blog. That site is: www.bigsistermiddlesisterlittlesister.blogspot.com
It is funny to watch them check these sites constantly. They are always trying to get more followers. (I have had a book review blog for over a year now and think Leah and I might be tied for followers). If you have time and want to check in on them, they would love it.
As appointment time draws nearer, I will be posting again on this site.

November 12, 2009

2009-11-12T17:11:00.002-06:00

AFP 1.5

A good check-up and shopping trip today. Our new doctor is just fine, even though we do miss Dr. Radhi. He is just used to us and all of our idiosyncracies (like the fact that Leah does not enter an exam room to sit and wait until the doctor is ready for us). Leah's platelets are still a little low, but this seems to be "normal" for her, although we do wish they would go up a bit more and stay there.
Everyone at our house is tired out, but tonight we still have swimming lessons and Chris is helping out with the K-5 wrestling program. Luckily tomorrow is Friday.
Our next visit is scheduled for mid-March---it seems so far away now, but we know it is also just around the corner.
Last night I had laid everyone's stuff out for the morning and told Chris about it. He looked at me and said, "where are you going to be in the morning?" He did know Leah had an appointment but thought it was next Thursday. Here I have been worrying for about two weeks straight and Chris doesn't even have it on his radar yet. In his defense, my worrying isn't very productive and it isn't going to change what happens anyway, so he is actually better off not thinking about it. We don't sit around talking about cancer or doctors or what Leah has been through very much. We are very aware of it, but it's not a great topic of conversation.
I am ready to enjoy the holidays now and need to start planning for that. There are lots of things on my "to do" list.
Thanks for checking in on us and all of your prayers.

November 5, 2009

2009-11-05T09:59:00.002-06:00

Where does time go? I groan when I think that next Thursday is time for another Iowa City visit. When Dr. Radhi asked me in July if I wanted to wait six months in between appointments I told him that was too much time in between. I still think that, except now that it is appointment time, I wish we had a bit more time without remembering and worrying about cancer.
Leah looks great. She has grown a little more and when I had the girls try on their clothes hers are starting to look a little short. It is hard to know if she was just always going to be this petite or if a part of it is from the treatment she received.
We had both girls conferences the other night. Both had good reports from their teachers. Leah still is all about school and learning more. Chloe probably enjoys things a bit more without getting as worked up about stuff as her big sister. They ride the bus each morning and Leah is ready to go 30 minutes before the bus is scheduled to arrive. Chloe slowly gets herself ready and will just lay on the floor doing nothing just to see Leah freak out about the prospect of missing the bus. It is humorous and annoying at the same time.
Reeve is still trying to hang on to some of her baby behaviors, but is horribly offended if her sisters call her a baby. She likes to be carried around yet, but is seeming more grown up each day.
Next Thursday will be our first visit with our new doctor,Dr. O'Dorisio. Most Iowa City faces are new to us it seems, but she did round on Leah once, and was a part of the team that decided her treatment. I have contacted Dr. Radhi about the prospect of doing blood draws in Iowa City but seeing him, and he is still looking into that. We are once again praying for a great check-up - low AFP, high platelets, and everything else to be where it needs to be as well. We are approaching the four year anniversary, or cancerversary, of Leah's diagnosis. I am not sure if that is making me a bit more on edge as well - just this time of year brings back a lot of memories. If you still check in, thank you. We are blessed to have so many people who have prayed and continue pray for Leah's complete healing here on earth. I will update again after our appointment next week.

July 9, 2009

2009-07-09T18:11:00.002-05:00

AFP = 1.7
Today was another good Iowa City day.....things have changed slightly every time we have gone back, but it just seemed more noticeable today. Today was our last visit with Dr. Radhi, who is going to Kansas City at the end of this month. We have made so many trips to Iowa City that I can't imagine a visit without him. When I made a comment about perhaps going to Kansas City to see him instead, Dr. Radhi was thinking that was not a bad idea. He has a few other patients who will be doing that. I guess the big thing before we decide is whether insurance will cover Leah seeing him in KC. Since all the blood work looked good, Leah has officially been off treatment for three years now. Dr. Radhi asked me if I just wanted her seen every six months. I compromised to coming every four. Six months seems so long between visits. After our hospital trip we did our usual stops- Prairie Lights Book Store, the Coral Ridge Mall, and then to Williamsburg today instead of Cedar Rapids. We found a few cute things so that I don't really think the girls need much for school in the fall. They probably won't like to hear that! :)
We are all tired tonight. Since we have moved to our "summer schedule" (late nights and sleeping in) leaving by 5:30 AM was a rude awakening.
We are looking forward to a weekend in Chicago, a trip to the Des Moines Zoo, and maybe even Walnut Grove, MN, one of Laura Ingalls Wilder's homes (we are now FINALLY on the last book, The First Four Years for our nightly read aloud). Thank you for your continued prayers and support and caring.

Summer Highlights...Appointment Next Week

2009-07-02T17:55:00.002-05:00

Summer is underway! Finally! I still am wearing pants and a sweatshirt today, but there's not much I can do about that. I loved the heat a few weeks ago; it can return any time.
The girls were out of school on June 1, but I went until June 9. I can't believe the 4th of July is already here....after that summer goes even faster.
Highlights so far:
* Leah spent 3 days at Pine Lake Christian Camp in Eldora with her friend Emily
* Reeve chipped her two front teeth while playing with my car keys and hitting herself in the mouth
* My grandma (who the girls refer to as GG) passed away on June 17 at age 93
* Leah spent a week attending a Science and Math enrichment program at Price Lab in Cedar Falls
* Leah and Chloe took swimming lessons at the W at Wartburg
* Leah, Chloe, my mom and I went to Boone and took a train ride
* We have been to the Falls on our hot days to play in the pool and get tan
* Leah made a last minute decision and decided to play coach pitch ball this summer. She learned a lot and even had fun!
* VBS is coming up in a week
* We are going to Adventureland with friends on Monday

Leah's appointment, originally scheduled for June 11, was postponed until June 18. That was the same week Leah was going to Price Lab, so I asked to reschedule for the 25th. Unfortunately Dr. Radhi didn't have anything available until July 9. So, Leah's appointment is next week. This is the longest we have gone between visits, so I am starting to get a bit tense. Even though things seem OK, we know from other people, that it doesn't mean things are OK. UGH. The bad news we also found out from Iowa City is that Dr. Radhi is leaving to go to Kansas City. This will be her last appointment with him. I have read on many other caring bridge sites about doctors leaving and the sense of abandonment families feel. I can totally relate. I have actually spent a few sleepless nights thinking about this. I just can't envision an Iowa City visit without him. We have trusted him with our child's life and he totally understands her, the situation, and us and where we are coming from. So, we are rather sad already about not gettting to see him, and even though we will still email him and call him, it just won't be the same.
Thanks for checking in on us. Please pray for a low AFP, higher platelets, and for Leah to have grown a bit height-wise. I will post again after our appointment on Thursday.

2009-05-09T19:25:00.000-05:00

March 12, 2009

2009-03-12T20:13:00.002-05:00

I just checked our blog tonight, after having updated it from Iowa City this morning, to realize that somehow that update never got posted. Bummer.
So....
AFP =1.6
Things still look good. The only thing I don't like is that her platelets are at 137....normal is 150-400. When I quizzed Dr. Rahdi about it he didn't seem very concerned. I had known, and he reminded me, that sickness will make a person's platelets drop, and since Leah was sick last week, this was the perfect set-up for lower platelets. He told me that he always had to give me something to worry about on each visit.
After our visit we managed to stop at Prairie Lights Bookstore, Coral Ridge Mall, and had lunch at Hu Hot. Leah claimed she was starving, but there was not a lot of food that she ate at Hu-Hot. However, she managed to "need" an ice-cream cone from Cold Stone Creamery right next door, and ate the entire thing. We did stop at the consignment shop, but for the first time ever, bought nothing. There were a lot of cute things there, but the girls don't really need anything right now (although they might after I get a look at their spring and summer stuff), so we left emptyhanded.
Our next visit is not until June 11. There was some discussion about when a scan will take place. I am all for doing them on an as needed basis, which is how we left things for right now.
Thanks for checking in and all your thoughts and prayers.

Postponed til next week

2009-03-04T19:48:00.002-06:00

This week has been incredibly frustrating at our house. Chris and I spent all weekend sick at home. Whatever bug has been going around it has found our family. We both had some sort of fever, aches, chills and cough that persisted. I ended up missing Suzanne's bridal shower in Des Moines that Leah went to with my parents. Chloe has acted like she doesn't feel great, but has kept on going to school (on Friday 14 out of 24 kids were absent in her room). Chris and I both stayed home from work on Monday and thought we were recovering when Reeve started vomiting on Monday night. She kept that up through yesterday. This morning Leah got up with the same type of symptoms as Chris and I have had. So.....I rescheduled her Iowa City appt. for next Thursday. I hate postponing the trip and it just keeps me worrying for longer, but I don't want to take her down if she is sick---I am not sure how her lab results would look, and she also doesn't need to spread her germs all over the clinic where the kids have compromised immune systems. And, the day is long enough already without going there with a sick kid. So, right now Leah and Reeve are watching TV, Chloe is at midweek at church and Chris is at a Lenten service. We will just get to enjoy one more week of normal life and hope that we can all get healthy. Thanks for checking in and all the prayers for Leah's complete healing on earth.

February 25, 2009

2009-02-25T10:45:00.002-06:00

Yes, time has flown by again. We got the reminder notice on Monday in the mail for Leah's appointment on March 5. This time is supposed to be a CT scan. However, Dr. Rahdi and I have emailed each other a few times about this. I have jokingly always asked him why we have to keep scanning. But seriously, why do we have to keep scanning? I have done my hepatoblatoma research and know that different hospitals have different protocols. There are many places who never scan and just rely on AFP. There are many places that scan for a while and then rely on AFP. So, he has agreed with me that for now we can just rely on AFP as well and leave the scanning to an "as needed" basis. Chris and I are both comfortable with that. We have only told Leah that for right now she won't need a scan on this visit. I don't ever think I can promise her that we are all done with them, even though I would like that and pray that we are done scanning. Scanning has it's own risks as well, and it is quite the production for Leah to get an IV, so she is happy to just be having a poke.

We are of course praying for a low AFP and for the rest of her bloodwork to be just dandy. She is enjoying gymnatics and is starting piano lessons next week Wednesday. Chloe is also taking gymnastics. Last night we had the parent kdg. roundup meeting. She is ready to go. Reeve has started sleeping in the trundle bed in the girls' room. This is not going very well at this point. On Monday night I was only up six times in the night...Chloe has also taken up talking in her sleep and I don't want her to wake anyone else up, and I can't tell if she is awake or not when she is yelling for me. Last night Leah came into our bedroom four times to tell me what Chloe was saying. Finally on the fourth visit she got in bed with us. Then Reeve woke up (for good) at 4:15 AM. So, we have a few kinks to work out.

I will post after our visit, and appreciate all the prayers and thoughts we receive.

December 11, 2008

2008-12-11T16:16:00.003-06:00

AFP = 1.6

All is good again in Iowa City. We arrived very early (always my plan) so we could have the bloodwork done before Leah's appointment with Dr. Rahdi. That way when we see him the labs are back. Leah had an EKG scheduled for 10:45, which would have put a serious crimp in our lunch and shopping schedule, so after her bloodwork we were able to get in early for her EKG. Dr. Rahdi didn't have much to tell us and everything appears to be good. We managed to do our usual list of activities: Prairie Lights book store, lunch at Olive Garden and shopping at Coral Ridge. We also stopped by the consignment shop. Our next visit is not until March. Since we have been going less frequently (something I can definitely get used to) there are always new faces and not the familiar ones we enjoyed visiting with. I am not complaining at all; there are just fewer people to stop and see while we are back.

The girls are watching a DVD, I am trying to get a short run in, and then we have story hour tonight. The girls are also trying to sneak a visit to Grandma Kathy in tonight, too.

Thanks for all the prayers and continuing to check in!

December 4, 2008

2008-12-04T08:39:00.002-06:00

Yes, it is that time again. It is so hard to believe that our last Iowa City trip was back in September. I am not sure how we felt any relief when we had to go there every month. Leah is scheduled to see Dr. Rahdi next Thursday. She is also supposed to have an EKG to check her heart function. One of the long term side effects of chemotherapy can be damage to the heart. Leah showed some damage when she had an EKG after she completed chemo, but not enough damage for them to be doing anything about it or for us to worry about. Of course we are praying for a low, low AFP, and other good results of her bloodwork, and a good EKG report.
I would like to start looking forward to Christmas but feel like I am on hold until after her check-up.

We have enjoyed three more months of normal life. Over Thanksgiving we traveled to Montana to see Chris' brother, Randy, get married. Even though the car ride was long (fifteen or sixteen hours just depending) we had a good time and the girls were great travelers. My sister is also getting married in April, so we have that to look forward to, as well as a new baby sometime in December for my brother and his wife.

First grade is going well. Leah is enjoying it all and I like hearing her version of things when she gets home. Chloe loves school, too, and her teachers say she always has a smile on her face. It's too bad that she doesn't get up that way! Reeve is still working on talking, and we would like her to work on potty training even though that doesn't seem to be a high priority for her.

Thank you for checking in on us and continuing to pray for Leah's complete healing here on earth.

September 4, 2008

2008-09-04T17:51:00.002-05:00

AFP = 1.9, Scans are clear!

Early this morning Leah and I headed back down to Iowa City for a check-up. We were there very early, but I knew that the way things were scheduled that I would be running between the peds. clinic and CT scan. Luckily everyone was really nice about this today. Leah really didn't enjoy getting her IV. She does seem to be developing some of my phobias. I had put emla on her arms which numbs them when they are placing her IV and after she got over her initial trauma she didn't even really notice the IV was done. Obviously the AFP is quite steady....I think it has been 1.9 (or 1.8) since February. The platelets were the only thing that I can now worry about. Dr. Rahdi told me not to, but that would be virtually impossible for me. Normal range is 150,000 - 400,0000. Well, Leah's are 166,000. That is normal, but they were over 200,000 so now I can wonder why they dropped. I know there is a range of normal and things fluctuate. I also know all her other labs looked great. And as much as I would like them to be on the upper side of normal, maybe that isn't going to happen. Unfortunately I have no control over her platelets and I can't fix them with dietary changes or anything like that....and they are completely normal.

We managed to go to Coral Ridge Mall, eat at Olive Garden, stop at Prairie Lights book store and hit the consignment shop. I am totally exhausted. I didn't sleep well last night and we drove in the dark and rain all the way there. I am glad tomorrow is Friday.

I am posting from my parent's house and their computer is much better than ours. Unfortunately I left my camera at home because I was finally going to post some pictures.

Funny story: The other night Chris gave Leah her Relay For Life Survivor shirt. Chloe was disgruntled about this and the fact that Leah *always* gets everything. So, I said the reason she got the shirt was because of all the times she had to stay at the hospital. Her response, said with disbelief, "she got a t-shirt for THAT?" Like staying in the hospital was the most ridiculous thing to earn a cool t-shirt.

Chloe has also started up her speech class at UNI. Chris' mom takes her since it is two times a week during the day. I was asking Chloe what her teacher's name was (I had talked to the coordinator earlier yesterday morning and couldn't remember it). Chloe told me "Aleesiana." Hmmm...I asked if it was Leeann (which is actually correct) but she insisted, and continues to insist that her name is "Aleesiana." Maybe we are watching too much hurricane coverage.

And speaking of hurricane coverage, someone who shall remain nameless told Leah about the Weather Channel. We are watching an awful lot of weather at our house now.

Both of Leah's big front teeth are out now and I have a picture of her with Dr. Rahdi (he is holding on to her while she tries to get away -which is the story of their relationship in a nutshell) that I need to post when I visit my mom and dad again....

Thank you for checking in and all your prayers. We are forever grateful to so many people and continue to pray for Leah's complete healing here on earth.

August 22, 2008

2008-08-22T08:35:00.002-05:00

Times flies! Leah and Chloe both started school on Tuesday. They had open house on Monday night and were able to drop off their supplies and meet their teachers. Both are enjoying themselves, but don't respond with much more than "fine" when I ask how their day was. I do know that Chloe really enjoys hot lunch. Leah, however, still has me pack a lunch for her each day.

The 15th was Leah's 7th birthday. We had a party for grandparents, aunts, uncles and cousins on the 16th. Back in April or May I saw that Jon and Kate Plus Eight (Leah's favorite TV show) was coming out on DVD. Somehow I managed not to mention that even once, so Leah was very surprised to get seasons 1 and 2 as a gift. She then spent the next two days glued to the TV watching every episode.

Reeve will be two next Friday. She is starting to talk more, which is much better than the grunting and screaming in order to communicate her wishes. She still loves saying "Naughty, naughty, naughty," and wagging her finger at whoever she feels is wrong. The girls have egged this on a great deal.

I started school on Monday, but don't see kids until this coming Monday. Mornings seem to come awfully quickly, so I am hoping I can sleep a bit later this weekend.

Leah's next appointment is September 4. This time there is a CT scan. UGH. Again, she looks great, and the further out we get from her end of treatment the more it seems unreal that she was ever sick to begin with, or that we may have to face cancer again. We continue to pray for her complete healing here on earth and a long, healthy life. If you are still checking in, we appreciate your prayers as well.

Two more families that need your prayers, too. The Reed family lost their son, Kyle, on March 8, 2006, and we met them while we were in Iowa City. Kyle's mom, Paula, learned just a few weeks ago that she has breast cancer. Their website is: www.caringbridge.org/ia/kyle

The Carricos of New Sharon, Iowa, also need your prayers. Their son, Jace, passed away on August 19, 2009, of a brain tumor recurrence. Travis, Jace's dad, was a funeral director in New Sharon when Leah was diagnosed and was kind enough to visit with Chris and offer words of encouragement to us. Jace's website is: www.caringbridge.org/ia/jacecarrico

I will update again after Leah's appointment, so please check back in. Thanks for keeping her in your prayers.

I also need to find time to post a new picture. She lost her third tooth, one of her big upper ones, and looks so grown up :)

June 26, 2008

2008-06-26T16:14:00.002-05:00

AFP - 1.9! AGAIN!

If this number seems a bit repetitive, it is. Leah's AFP was 1.9 today, 1.9 on April 10, and 1.8 on January 31. That is all fine by me. It can stay right there.

We had a good checkup in Iowa City. Aside from seeing Dr. Radhi, which we expect, we also saw Leah's friend, James (he's our friend, too, and used to be a nursing assistant on the Hem/Onc floor), who is in med. school. He saw Leah's name on the list of patients for the week in the clinic and chose to be in the clinic today when we were there. Leah was a bit shy at first, but found it hard to stop giggling after we started talking. We also visited the hem/onc floor to see if any of our old nurses were around. We managed to catch up with Roshaun and Tom- it was good to see both of them, but we only plan on visits like today. Leah was pretty quiet when visiting them....whether it is due to memories of our time in Iowa City, the fact that she is generally shy around people initially, the fact that she is getting older, or a combination of those things, I am not sure.

We stopped at our usual spots - Prairie Lights Book Store, the mall, lunch at Hu Hot with our friend, Lis, and then a stop at the consignment shop in Marion. The big purchase at the consignment shop was a Lego table that the girls are busy with now.

I can finally breathe a sigh of relief and schedule some things for our summer. As I started to list them off over lunch I came to the realization that we have a lot to cram in to our summer yet. Time is going so quickly!

Thank you for checking in and the many prayers you have said for Leah's complete healing here on earth. We are grateful each and every day for the many people who continue to check in on Leah and pray for her.

June 20, 2008

2008-06-20T09:57:00.002-05:00

It seems like time is going so quickly.....we finally have some real summer weather and have made a few trips to the Falls in Cedar Falls. The girls love playing there and Reeve even enjoys herself. Luckily we managed to stay high and dry in Denver, but Chris' parents were not so lucky. Their basement had water up to the ceiling and they are still busy cleaning up from that mess. Just yesterday they had their electricity turned on. Chris has been helping out at night trying to get things taken care of, so it feels like are barely seeing him right now.

Leah's appointment in Iowa City is scheduled for June 26- this upcoming Thursday. I am not excited about going back at all. She appears the picture of health on the outside and has so many plans for each and every day. When I indulge her in trying to accomplish all the things she wants we rarely get to bed before 10:30--a little too late. These past two weeks Leah has attended some enrichment programs at Price Lab in Cedar Falls. This week she has four classes: scrapbooking, Spanish, Oceans Away, and More than Cards (another artsy class where they make bookmarks and giftbags). I think she is enjoying it although she did mention she was quite sweaty there. I guess we can feel lucky that it didn't warm up until this week, then.

Both the girls finished their school years and are looking forward to this fall. Leah is thrilled to be heading to first grade and Chloe will be attending Discoveries in the fall. Right after Chloe got out of school she and Chris headed to Montana for a week- the highlight was Uncle Randy's bunny who lives in the house and is paper trained. I am happy she enjoyed it, but don't plan on getting one for our house.

There have been so many things going on since I last updated, but for the mostpart none are that outstanding.....just enjoying being busy and normal.

My Leah quote from yesterday....she had managed to scratch herself on her chest with her scrapbook and it left a pretty good mark. I asked her if she had said anything to her teacher and her response was, "No, I wasn't that traumatized by it."

Both the girls seem to have enjoyed living dangerously....Chloe fell off her bike yesterday and now has a bloody knee. At the Falls, the bucket of water overturned on her while she was on the Lazy River and the force of the water overturned her innertube and knocked her out of it so Chris had to fish her out, and last night she fell out of bed and hit her eye/face on the chair by the bed, giving herself a black eye. Leah was jumping on a trampoline a week and a half ago and fell and sprained her ankle. She limped or hopped around for a few days. After I bought her a wrap she did do a better job of recovering and refuses to even acknowledge that she may be babying it a bit yet when she runs. Since I rarely wanted to do anything other than read when I was little these injuries are foreign to me; I am most familiar with paper cuts :).

Please pray that Leah's checkup on Thursday is as routine and boring as they come. It is "just" an AFP draw, but these seem to be just as stressful as any other visit.....we are praying for a very low AFP and time to enjoy our summer.

April 11, 2008

2008-04-11T08:36:00.002-05:00

What a chilly Friday morning it is today! We just can't seem to get rid of winter.

Our day in Iowa City yesterday went well. If you did not read yesterday's brief post, Leah's AFP is 1.9 and her CT scan looked good. Dr. Rahdi did examine Leah but there was not much to see. We go back again in two more months- sometime in June. That will mark her two year anniversary of being off treatment. The worst part of yesterday was the IV that Leah had to get - it took them over ten minutes of digging around with the needle to get a blood return. Usually Leah is not overly bothered by getting an IV, but she kept saying she felt like she was going to throw up since it was taking so long. She even laid down for a while afterward. This is how I usually react to anything related to blood, and it appears that Leah might be developing her own phobia (although with all the digging around they did maybe it was a one time occurrence).

Hu Hot was yummy. We also spent some time at Coral Ridge Mall and the consignment shop in Marion. The ride home was quite windy and rainy (much like the drive there).

April is a busy month for us: spring concerts, some weddings on weekends, the final weekend of classes for me, Drake Relays Half Marathon for Chris, and a variety of other things that seem to be booking up our time. We are hopeful for warmer weather, and grateful, as always, for the continued prayers for Leah's healing here on earth.

April 10, 2008

2008-04-10T10:07:00.002-05:00

AFP = 1.9!

I will write more tonight, but right now I have decided to log on to the Ped. Clinic computer (that might not be legal, but that's what happens when we have to wait!). We have yet to really see Dr. Rahdi, just have chatted a bit, so he needs to really examine Leah. Her scans are done and he has not looked at those yet, but the AFP is good news. Her hemoglobin is 14.2 and her platelets are right at 200.

Leah has eaten (finally!) and plans on shopping. She is venturing from her normal lunch of Olive Garden and requesting Hu Hot.

Change of Plans

2008-03-26T18:24:00.003-05:00

Well, it turns out we won't be going to Iowa City after all tomorrow. Leah threw up at school this afternoon, so I called to reschedule her appointment. There are some pros and cons to this. This means I can worry longer - and psychoanalyze everything for longer, too. But since her appointments have normally been scheduled 9 weeks apart and this time there were only 8 weeks between appointments, I am trying to content myself with the idea that waiting until April 10 (which is when we are tentatively setting up a CT and check-up with Dr. Rahdi) is only one more week than we have normally been waiting. Of course we are praying that this appointment is routine and then we wouldn't go to Iowa City again until after school lets out for us both - and that would be nice as well.
The annoying thing is that I was totally convinced when the secretary at school called to tell me about Leah throwing up that she had the stomach flu. She had hardly eaten for the past two days, which is how Reeve's flu started. I had even quizzed Leah about this yesterday and asked if her stomach felt OK. When I got to school she seemed mildly sick, but she seems perfectly fine now. I almost hope she throws up again sometime now because I am feeling so guilty about changing her appointment.
Dr. Rahdi and I talked while I was driving from Waterloo to Denver and discussed the fact that she could wait to be seen for a few more weeks. Taking he rto Iowa City to a clinic where there are many immuno-supressed kids wouldn't not be appreciated by anyone. So, I guess that is the plan. I can lose sleep for several more days and hope that everyone can pray for a routine check-up for a few more weeks.
We'll continue to enjoy our spring and keep hoping for warmer weather.

March 24, 2008

2008-03-24T04:46:00.002-05:00

Looking back at my last post it seems impossible that almost two months have passed. That means it is time for another Iowa City trip. Leah has a CT scan and blood work scheduled for Thursday morning. Once again she looks great on the outside, but the fear of something going on that we cannot see is always there. I am not sure who still checks in on us, but if you are, please pray for Leah to have a very boring, routine checkup on Thursday: a clean CT scan and low AFP.

Since I last posted we have enjoyed having a normal, busy life. Dance Marathon was the first weekend in February and the girls thought it was great! We left Reeve at Grandma's because Chris and I had to drive separately so I could drive back on Saturday morning to take a class. That left him with Leah and Chloe to hang out with. My sister, Suzanne, and our friend, Lis also came to hang out and help.

More recently we have had the flu visit our house. Only Reeve had it horribly- throwing up for over 5 days. I had it for 24 hours, but the rest of our family seems to have missed it. Reeve is talking more - she is good at saying no, but has figured out how to nod her head as well, and is very good at saying "here, Mommy," with anything and everything she hands me.

Our Easter celebration was low-key this year. I took the girls (Chris stayed with Reeve) to the Good Friday Tenebrae service at church. Last year Leah fell asleep waiting for the lights to go off. This year she was awake, but annoyed with how long it took. On Saturday we decorated eggs and hid them outside a few times. Reeve's contribution was her one colored egg she managed to poke her finger all the way through. The girls were excited to look at their loot on Easter morning and had a good time finding all the eggs the Easter Bunny hid. We went to church at Nazareth in Cedar Falls since their service began at 10 - a sunrise service with 3 young kids is a recipe for disaster at our house. Last night we went to my parents for supper.

Today it is back to work and school. Both Leah and I had spring break last week. I am guessing we will be rather tired and crabby by the end of this week.

I will post Thursday after our appointment. Please continue to remember Leah in your prayers, especially for her check-up on Thursday.

January 31, 2008

2008-01-31T16:22:00.000-06:00

AFP - 1.8!

This will be a short update. Leah has been up since 5:15 AM when we left for Iowa City and has been coughing almost every spare moment all day. In fact, she often cannot go a full minute without coughing. She is rather miserable and tired, which translates into CRABBY. Chloe's nose is dripping as much as Leah is coughing. Normally this all would just be annoying, but this weekend is Dance Marathon in Iowa City and we are leaving for it tomorrow afternoon, so it would be nice to be healthy for this since the girls will have a late night.

Despite the fact that Leah doesn't feel so good, she had a great checkup, and still managed to shop and eat at the Olive Garden. We are thankful we can relax and breathe for about two more months before our next Iowa City trip.

Funny story: the other day Leah and I were reading a book about Baby Duck going to school. The grandfather in the story was so kind and helpful to Baby Duck and seemed to always have a solution for Baby Duck's problems. After we were done with the book we were reading about the author, who based the character of the grandfather after her own grandfather. Leah looked at me and asked, "you mean her grandpa was a duck?"

Thanks for checking in on us and all your prayers!

January 23, 2008

2008-01-23T12:22:00.000-06:00

The pictures from our last post were taken fairly recently. Leah is getting a lot bigger/older, and so are her sisters.

Just a quick update: we have our AFP draw scheduled for next Thursday, January 31, and we continue to pray for a very normal, routine, boring checkup and a very low AFP number. One would think that going back for checkups would get easier over time, but so far I haven't felt any more at ease. The fear of going back and living in the cancer world is horrible. And what is worse is knowing you have no control over this at all.

We had a great Christmas and continue to enjoy going to school and work and participating in all the regular day to day things: making supper, reading bedtime stories, going to story hour at the library, trips to Target, attending midweek at church, getting together with friends....

We ask that you pray for Hannah who has relapsed with Ewings Sarcoma just yesterday and is already undergoing surgery today to remove the tumor in her lung and have a port placed this morning. She has been in remission for eighteen months.....back in the swing of a normal, ten year old girl's life...and a tumor was found during a routine CT scan. It seems that no one is ever done with this disease. (www.caringbridge.org/visit/hannahknudsen)

I will update more after Leahs' appointment next week, and ask that you continue to pray for her healing here on earth.

2007-12-17T19:45:00.001-06:00

November 29, 2007

2007-11-29T18:32:00.000-06:00

AFP = 2.7, CT - Clear

Hooray! A good check-up. If only the lead up to these check-ups were not so good at producing anxiety.

Leah and I left at 5:45 this morning and were in Iowa City by 7:30. That gave us enough time to check in at the peds. clinic and have an IV placed before her first appointment with otolaryngology. Leah has high frequency hearing loss due to chemo., and they will continue to monitor this over time. There are instances where hearing worsens over time, even years after treatment has ended. Luckily, Leah's hearing remains unchanged from last year.

By the time we were done with the hearing test and had reported to CT scan and been given the barium drink, we decided to see if Dr. Rahdi was in the clinic. So, we headed that direction and visited with him for a while. I was quite happy that Leah's blood work was back even before her CT scan, so we already had the AFP number going into the scan. Her other numbers look good, too. Her hemoglobin is 14.0, her white count is 9.3, and her platelets have risen to 204 (normal is 150-400).

Lis met us at the hospital on the way to her class so we talked for a bit with her while Dr. Rahdi looked at the scans and then we headed off for a day of shopping: Prairie Lights, Coral Ridge Mall, Olive Garden in Cedar Rapids for lunch and the consignment shop. Leah still thought we should stop to shop a while longer in Waterloo, but eventually gave in and decided we could go home.

A good check-up is the best Christmas present we could get....and now we can enjoy some of the activities that are planned for our month: Leah's Christmas concert on Monday, going to a performance of Frog and Toad at the Gallagher Bluedorn, taking part in Waverly's big downtown Christmas event (Leah and Chloe get to dress as penguins -like Happy Feet- and dance in a store window) and a variety of other Christmas related things.

We continue to be grateful for each and every day we spend as a family and pray for the other children we know who are in treatment, and the families that will be celebrating the holidays this year without their children. It is still amazing to us how many people inquire about Leah and let us know they are still praying for her. Even though she has been off treatment for eighteen months, we don't take as single day for granted, and continue to be encouraged by the fact that so many people are praying for Leah's healing here on earth. There is also not a day that goes by when I am not hit by some memory of the enormous amount of generosity and caring that people showed to us while Leah was sick. While there is no way for us to ever fully repay everyone for their generosity and concern, the many kindnesses were not unnoticed and are still so fresh in our minds.

We are happily ready to celebrate the birth of our Savior this Christmas season and wish everyone a Merry Christmas!

November 27, 2007

2007-11-27T10:36:00.000-06:00

It is time for another check-up again. It doesn't seem possible that 9 weeks have elapsed since we were last in Iowa City. Life has been busy and normal. Now that Thursday is approaching the anxiety has set in. Leah looks great. Her hair is long enough to be pulled back, although she prefers it covering her eyes. She seems to have a lot of energy and a great appetite. So, the outside appearance is hopefully not hiding anything else that is going on inside her body. I know there will always be that fear - at least for a long time.

This past weekend Leah and Chloe went with me and my sister Suzanne to see High School Musical on Ice in Des Moines. We had a great time, although Leah did tell people that it was "exhausting." December is full of lots of activities, too, as we prepare to celebrate the birth of our Lord.

We continue to pray for Leah's complete healing here on earth, and are thankful for friends and family who keep Leah in their prayers as well. I will post on Thursday after Leah's appointment.

September 27, 2007

2007-09-27T09:38:00.000-05:00

AFP= 2.9 YAY!!!!

We are done visiting Dr. Rahdi for the month. Right now we are visiting with Lis at her apartment in Iowa City before she leaves for class. On our agenda for the day is shopping at the mall, eating at Olive Garden, stopping at Prairie Lights book store, and going to the consignment shop. Should be a fun and busy day. I talked to Nita about Leah's bloodwork--which was only the AFP. Her next visit which includes a CT scan is November 29- the week after Thanksgiving. Two years ago this coming Thanksgiving was Leah's date of diagnosis. Leah has also managed to grow an inch - she is now 41 inches and gain a pound.

So, life is good. Things are busy. Last night Leah had cheerleading practice because she will be performing at the football game tomorrow night. She and Chloe also had midweek/Bible class/Sunday school at church last night. They both love it. Tonight is Chloe's story hour at the public library. The most exciting things coming up are Chloe's 4th birthday on October 18, going to Kids Bop in concert in CR on October 24 and seeing Annie at the Gallagher Bluedorn in November. Leah has also decided she would like to go bowling and try that out. Our summer vacation plans of going to Chicago fell through in August so a trip on a weekend is sounding kind of fun, too.

Thanks for checking in and praying for us. I know I keep promising to post a new picture of Leah someday-and it will happen. I am still without my cord -lost since we moved at the end of February. Any day now I will break down and just go buy a new one.

September 21, 2007

2007-09-21T08:46:00.000-05:00

Things have been going well here in Denver. Leah is enjoying school and Chloe is loving preschool, too. Reeve is starting to talk a bit (at least we think we know what she is saying). She is certainly trying to communicate her desires to us. Next week we go back to Iowa City for an AFP draw. It has been nice having this longer time between appointments, but even thinking of returning there for a check-up brings on so much anxiety. On the outside Leah looks great, but there is always the fear that something awful is going on in her body that we are unaware of. So, if you are still checking in, please remember to include Leah in your prayers - that she have a very uneventful check-up and a low, low AFP.

August 23, 2007

2007-08-23T09:00:00.000-05:00

Yesterday was Leah's first day of kindergarten! I think she enjoyed herself, although it was quite hot and humid. Luckily they are getting out early the first two days. I am hoping she has a great year. She seems more grown up already.

On August 15 Leah turned six-another big milestone. We celebrated at Chuck E. Cheese and then also had a party for grandmas, grandpas and aunts and uncles, too. This year her cake was Little Mermaid-a new favorite (even though she has never seen the movie). The favorite gift was probably the sixth and seventh seasons of Full House. I have had about enough of this show, but the girls love it!

Next week is Reeve's birthday. Today is my first day of school with kids. Time is going so quickly. We also have Denver Days this weekend--the parade is what the girls look forward to.

We head back to Iowa City in September for her next AFP check. If you are still checking in, please pray for a low, low AFP. We are continuing to enjoy normal life and it seems the longer we are able to be normal, the scarier the prospect of the cancer world is. We so pray for a healthy, happy school year for Leah -that she is able to enjoy all the fun times of kindergarten.
Thank you for all your thoughts and prayers!

July 26, 2007

2007-07-26T14:30:00.000-05:00

AFP = 3.5, CT - Clear

Yes, as most of you will notice...the AFP has gone up a bit. Dr. Rahdi had his big speech all ready for me. 3.5 is still normal. 1.4, 3.5....it is all the same. AFP is not secreted as a constant, blah, blah, blah. The radiologist snorted at him when he informed him the AFP was 3.5 and the mother was not happy with it. Can I help it that I am a bit OCD?

Obviously the day was good. Dr. Rahdi and his resident informed us that the CT scan was quite boring to look at. Great! I'll take boring. No one knows why for sure AFP fluctuates. Dr. Rahdi has been trying to prepare me for this for months. After each draw he always asks me what I will do if it ever goes up a little. I usually tell him I will cry. Well, I didn't cry, even though I hate any fluctuation at all. I have now looked at a lot of people's AFP information to know that 3.5 is normal and most parents upon hearing that try to be pleased with that bit of information.

We did miss Ragbrai coming through Denver which was rather unfortunate. I think Leah would have liked to see that. When we left this morning at 5:30 AM there was not a bike rider to be seen. We got to the hospital early and after checking in proceeded to run up and down the stairs (Leah hates the elevator!) between 2nd and 3rd floor. CT lost Leah's paperwork so they wouldn't give us the barium drink until they could find her papers. I didn't really understand why they thought I would ask for the barium drink if we didn't need it, but eventually after 3 return trips we got the drink. The CT scan itself continues to be a breeze and Leah did another wonderful job of sitting still while having an IV placed.

After the dr./hospital stuff we drove to CR and ate at the Olive Garden. Leah was starving because on CT days she cannot eat until after her scan. We did a stop at Barnes and Noble and also the consignment shop. Tomorrow night is the consignment shop's Back to School Special so Leah called Grandma Kathy on the phone right away and lined her up to help us go shopping (with Chloe, too) at a variety of places tomorrow. Should be a fun and busy day.

We continue to thank God for his healing power and Leah's good health. We are thrilled we get to send her off to kindergarten and celebrate her sixth birthday in just 3 weeks (August 15th). We hope there are many more happy days ahead and remain grateful to everyone who prays for Leah's complete healing here on earth.

While we would normally return to Iowa City in 5 weeks, we may be extending that to a bit longer between trips. I will post more when I know specifics on her next visit, and sometime soon I promise to post pictures of some of our summer fun!

July 12, 2007

2007-07-12T12:11:00.000-05:00

We are enjoying some beautiful summer days! Last night the girls were outside watching and talking to Chris and his friend Andy who were spreading mulch as well as riding bikes and playing at our neighbor's house. It is great to be normal. Reeve has learned how to walk and she is keeping us on our toes because she is quite good at getting into things she shouldn't. While we haven't taken any big trips this summer, we did manage to make a day trip to Burr Oak, Iowa, to see Laura Ingalls Wilder's house. We also visited the trout hatchery in Decorah and some friends there as well. Last week I took Leah and Chloe to the water park in Cedar Falls - we loved it there and are planning to go back soon. Really, there is not much to report. We go back to Iowa City on July 26th for a CT and AFP draw. Of course this makes us anxious just thinking about it. We continue to pray for Leah's good health and complete healing here on earth, and hope that others still are including her in their daily prayers. We also have a few friends that are in need of some prayers right now: Elijah who has ALL and has relapsed and Jace, who was in remission for meduloblastoma (brain tumor) for two years + and has relapsed. Thanks again to everyone for continuing to check in on us, even though I don't post as often (I think that is a good thing!), and keeping Leah in your prayers.

June 21, 2007

2007-06-21T13:29:00.000-05:00

AFP = 1.4 - AGAIN!

It can stay that number for forever as far as I am concerned. Today's check-up went well. We actually arrived in Iowa City slightly early- the clinic wasn't even open, so quickly went and got a cinnamon roll and then came back to check in. When they were doing Leah's normal assessments (height, weight, blood pressure and temp.) Fred, the nurse took her temp. in both ears and said she had a fever. Leah looked good, and didn't feel warm to me. So, he used a different thermometer from another exam room and her temp. was normal. I know she isn't in treatment anymore, but we lived in fear of fevers for so long that even hearing that now-especially a random fever for no reason-had me on alert.

I almost was able to take a picture of Leah and Dr. Rahdi, but then when she realized what was going on she was having no part of it. We got to see Tom and Mary Lou and Anubah, a resident as well. Anubah was walking by us in the hall and didn't recognize us until I yelled out to her. Everyone who sees Leah from our hospital days can't believe how different she looks - how much hair, how much bigger, etc. We did know that James was working on third floor but once we had our lab results Leah wanted to leave - NOW. So, off we went for some shopping and lunch at the Olive Garden. She is once again napping in the van.

The next visit is scheduled for July 26 and will include a CT scan. UGH. Guess I will just enjoy the number 1.4 for a few weeks.

Thanks again for the prayers and continuing to check in. I don't post as often, but that's because life is normal here and we are enjoying it. VBS ends tomorrow and Leah has a playdate lined up, then we plan on doing a few fun things these next few weeks- trips to the pool, seeing some friends, the summer reading program at the library. Someday soon (when I can find my cord) I will post some new pictures. It has been a long time and Leah's hair is growing quite a bit.

June 10, 2007

2007-06-10T13:54:00.000-05:00

School is officially over! I have had two whole days of summer vacation. This past weekend we have been busy.

On Friday night we attended the Bremer County Relay for Life. We all had a great time. This year the event started at 6 PM and lasted until 6 AM, so unlike last year when Chris had a team that walked the entire twelve hours (while Leah and I were in the hospital), this year we just went as a family and Leah walked the Survivors Lap -she was the youngest one participating in that- and we stayed for the luminary ceremony. Leah and Chloe both had a great time. What a difference a year makes! They ended up walking/running three and a half miles. We didn't get home until almost 11 and slept in on Saturday. Of course the real reason for this event is the need to raise money for cancer research/finding a cure. Pediatric cancer does not receive much of the actual money raised at this event, which is the one drawback for me. While I don't want anyone to have to suffer through cancer, after spending a lot of time on the pediatric cancer floor and watching Leah suffer I would especially like some money to be sent that direction. I remember reading a newspaper article shortly after Leah was diagnosed about how 80% of childhood cancers are cured. Well, that may be true, sort of. Leukemia is highly curable, but there are so many cancers that are not. We know far more parents that have lost their child to cancer than have survived. There have been no new cancer drugs introduced for children in over twenty years. The federal government has proposed to cut funding for pediatric cancer. The list of statistics like this could go on and on. I remember many years ago when the only person that I knew very well that had cancer was my grandfather- and then not until he was 78 years old. Now not only has my child had cancer, but I can list many, many people that I know personally that have had to deal with this disease. This year's Relay for Life was very well attended, and it is receiving much more attention than ten years ago when Chris and I participated and walked by ouselves around the W-SR track waiting for our team members to take over for us. We hope next year's event draws even more people to it and that awareness continues to increase- along with money being raised - to help fund research for this disease.

On Saturday we attempted to do a quick clean-up of our house and then waited for our friends, the Vitts, to arrive. My high school friend, Sarah, and three of her kids made a trip up from Kentucky to see her family and friends while her husband is in Iraq. It was great to see them again and the girls liked playing with them. We ended up making hot dogs and s'mores over a fire Chris made in our back yard.

Today is another beautiful day. We have been outside a bit, had a picnic, rode bike/trike and are looking forward to visiting my parents sometime today. Cleaning should be on the agenda and it is once again time for me to drag out my scrapbooking stuff.

The Iowa City visit is approaching again. I hate the lead-up to these visits as I dream of AFP numbers each night. Please continue to keep Leah in your prayers - for continued good health, low AFP numbers and clean CT scans, as we hope to enjoy a lot of fun times as a family this summer and she gets ready to start kindergarten.

Leah has informed me that she has not blogged in a while, so wants to add a few words, too:

abcdefghijklmnopqrstuvwxyz 1234567890 i can writea book just wait and see.
LOVE LEAH and CHLOE

May 29, 2007

2007-05-29T09:53:00.000-05:00

Just a quick post in case anyone still checks in. We had a wonderful Memorial Day weekend. No big plans, but ended up getting together with friends on both Sunday and Monday. We also went to the Memorial Day parade in town.

On Saturday Chris and Leah decided to work on our laundry. Leah still loves throwing it in, but not the folding. Chris folded while watching movies on TBS. After a while I asked Leah what Chris was doing. She informed me he was "resting like a woman." Whatever that means.....

Leah is counting down school days--- just 3 more after today. I have six. Not sure what her big summer plans are, but she is looking forward to sleeping in.

The girls enjoyed having Chris' brother around. He and his girlfriend visited several times during the week they were here and even brought the girls a tent.

The other highlight of last week was Chris' birthday. He and I went out for supper on Thursday night--kind of nice to have some grown-up time.

Our next visit to Iowa City is June 21. Please keep Leah in your prayers---another low, low AFP and a summer of lots of fun family times.

May 17, 2007

2007-05-17T14:03:00.000-05:00

AFP = 1.4

Great news for us this month! Dr. Rahdi read the results with me and then jokingly yelled at me to "Get out of here! Is this low enough for you now?!" He also highlighted that it might go up some month but not to panic since it doesn't have much further down it can go.

We left this morning at 5:45 and were there by 7:45 for her blood draw. We found out that they are able to draw an AFP with just a finger poke, so that is something we may do next time. Right now I am putting Emla, the numbing cream, on each arm and then they decide which vein looks better before they poke her. We were able to visit with Tom in the clinic briefly and even stopped to see James. We were out of the hospital by 9 and then went to the Ped. Mall where Leah could play on some playground equipment. She also managed to eat an icecream cone from Whiteys and is planning to return there again on the next trip, and we stopped at Prairie Lights. Leah had a gift certificate left to use (I sort of spaced some gifts out so that some of these hospital days still included a treat). The monthly lunch at Olive Garden in Cedar Rapids and a stop at the consignment shop also took place. The big purchase this time were some scooters for Leah and Chloe. Chloe's is a plastic one that shouldn't pick up speed-thank goodness. Leah stayed awake the whole way down and is now sleeping in the van. We have many busy days ahead as we finish our school years. This weekend Chris' brother, Randy, is coming from Montana for a week and the girls are quite excited to see him. We are looking forward to the beginning of summer -perhaps some more unpacking and organizing will occur. Their dance recital is on June 16th and VBS also takes place in June. Our next visit to Iowa City is June 21.

Thank you all for the continued prayers for Leah's complete healing here on earth. We are so grateful for the support we receive each and every day. We plan on enjoying another month of good health!

May 11, 2007

2007-05-11T13:37:00.000-05:00

TGIF! It is beautiful outside yet again and we are ready for summer. Yesterday was Leah's graduation from Discoveries where she has spent this past school year. The program was cute and Leah picked out her outfit (an orange flowery dress) very carefully the day before. There was also a potluck lunch afterwards. Chris, Chloe, and I as well as all four grandparents and AJay, Anna and Drea, and Anna's mom who is here visiting all made it for the big event. We left Reeve at daycare since her enjoyment of this would be minimal. She is becoming very active and pulling herself up and crawling everywhere.

We go back to Iowa City again next Thursday, May 17. Once again we ask for prayers for a great check-up and low AFP. I have Leah's appointments scheduled through July, so we will see what Dr. Rahdi has to say- hopefully not too much.

Last weekend Chris worked a long time in our yard on pulling out some bushes and putting in some river rock. It does look nice. I had the indoor detail which included more unpacking as well as laundry and cooking and childcare. My contributions didn't look as impressive as Chris'.

My school year ends on June 5th and Leah's ends on June 1st. Both are coming right up. We would really like to enjoy a summer of good health, so again, please pray for a very uneventful Iowa City visit.

I will update after our trip on Thursday. Thanks for checking in on us, and have a Happy Mother's Day!

April 29, 2007

2007-04-29T17:11:00.000-05:00

The weather is beautiful and it feels more like summer today than spring! We are loving every minute of it. Things have been going along well for us. We have enjoyed having a few weeks of "normal" life-no snow days, school for Chris in Grinnell, conferences, etc. The school year is winding down, at least I am counting down, anyway. Leah's graduation ceremony is on May 10, and her day to visit kindergarten is tomorrow.

This past weekend Chris and I took Leah and Chloe to Minneapolis for a night at a hotel and swimming in the pool and then Saturday morning to the Mall of America and lunch at the Rainforest Cafe. On the way home we stopped off at the outlet mall in Medford. Today we are recovering-the girls were up very early yesterday and were so excited on Friday they got little sleep. Chris has mowed our lawn for the first time and it is so nice out that no one wants to be indoors.

There is really little to report aside from the everyday events we now look forward to and continue to enjoy. Leah's next appointment is on May 17 for an AFP draw. UGH! So, please keep sending your prayers for a low AFP and another great check-up. As I was looking ahead in my devotion book I noticed that May 17 is Ascension Day.....

This week Chris and I will be participating in a run to honor Megan Koepke who lost her battle to histiocytosis on February 2. The run will take place in Waverly after school for her junior high friends to participate as well. The profits go to the Heart Connection Camp for children with cancer and their siblings. Last week I insisted on running for a long time on the treadmill despite Chris telling me not to since my foot has been hurting. By the time I was done it was really hurting and still hurts even when I walk a week later. So, I am hoping that I can manage the three mile course. And speaking of running, Chris participated in a mud run in Hudson a few weekends ago with James, Leahs' nurse assistant. We took Grandma Kathy to watch and were not disappointed. It was muddy AND wet AND cold. They crossed a creek 14 times. And, in typical Chris style, he did not bring clothes to change into. We would have enjoyed visiting with James longer, but he was just too cold and too wet to want to hang out with us.

I am trying to post pictures, but without success. Our computer at home is in need of being replaced so I have put some pictures on my parents' computer but am not having luck getting them on the blog. In fact, it has been so long since I blogged I couldn't even access the site!

Thanks for continuing to check in on us, and please continue to keep Leah in your prayers.

April 12, 2007

2007-04-12T15:40:00.000-05:00

AFP = 2.3

We left today for Iowa City at 5:30 AM so that Leah could have an IV put in by the Peds. clinic before our 8:00 appointment for her CT scan. After we had that accomplished (Leah did an EXCELLENT job) we checked in for her scan, received the barium drink (another EXCELLENT job guzzling the drink by Leah), and headed back to see Dr. Rahdi. He checked her over and told us to come back after the scan to have him go over her bloodwork with us.

The scan itself was only a few minutes long. Leah was starving by this point, so she quickly ate a granola bar I had brought along while the nurse was removing the IV afterwards. Dr. Rahdi was happy to report her AFP number - 2.3- which is down slightly from 2.5 last month. He also went up to CT then to look at the scans with the head radiologist. While there is no final reading, both Dr. Rahdi and the radiologist saw nothing in their initial time looking at them, and don't expect to see anything. The AFP number would be rising if there were something there. Leah's other numbers we are always interested in are her hemoglobin - now at 13.7 and her platelets which are 290 (both are normal again!).

The rest of our day consisted of a stop at Coral Ridge Mall for some shopping, lunch at the Olive Garden as soon as it opened because both of us were hungry, and a trip to the consignment shop. Leah does a great job spending money, and told me that we would not be telling Chris much about this because he has us on shopping probation. After all of this Leah was very ready to take a nap while I drove home. These are long days for her when they start so early. However, as I type Leah has revived herself and is throwing in more laundry. We have limited her to one load per day and that is the first thing she wants to do when we are home.

We are so grateful to have another month to enjoy spending time together- and hopefully some warmer weather. Each and every day is truly a gift. Someday soon I will post new pictures so you can see how much longer Leah's hair is getting. Thank you all for your continued prayers for Leah.

April 8, 2007

2007-04-08T19:40:00.000-05:00

Happy Easter! We are enjoying the day, despite the cold, winter-like weather. Last year at this time we were still in the hospital after Leah's surgery- in fact, a year ago today was Leah's benefit.

Both Leah and I did not have school on Friday and we all enjoyed some extra time at home. I cannot claim getting anything remarkable done, but time off is always nice. Yesterday we colored eggs while Reeve napped. Both Leah and Chloe worked hard on their eggs and after we were done I hid them outside for them to find. We also managed to make it to the Good Friday service at our church. Leah waited so patiently for the lights inside to be turned off that she ended up falling asleep before church got done. Today we attended the Easter service at Nazareth in Cedar Falls, which is much easier for us to get to at 10 AM than a service at 6:30 AM. We all pay for the girls being tired later in the day! Leah was excited eary this morning to see that the Easter Bunny had visited our house and had me get Chloe up right away. Among their treats were sticker books - maybe they will finally stop putting stickers on their clothes, the first season on DVD of Full House and a DVD of Charlotte's Web and their first Barbies. Reeve was happily oblivious to all of this. She is working on crawling now, so that seems to require much of her time and effort.

Last week Leah spent two days at home sick with something....on Monday night she complained about being cold, went right to bed, and ended up having a fever that night and all of Tuesday. She perked up on Tuesday night, but I had her stay home another day with Grandma Karen to rest. Tuesday was the night that moms and dads were invited to go to dance class with their kids which she missed out on. Chloe enjoyed that both Chris and I attended her class and then took her out to eat at McDonalds. Leah has a ton of energy right now and has learned a new skill- how to do laundry. She is an excellent clothes washer, however, she likes it so much that she searches out anything that might need washing all the time. It is hard to keep up. Unfortunately she does not like folding or putting away clothes nearly as much.

Thursday is Leah's appointment in Iowa City. This is something we have been thinking about now for a while and ask for your prayers for a clear CT scan and very low AFP. Looking at Leah it appears that she feels great, yet there is always the fear that something is going on inside her body that we cannot see or know about. We know that God is holding Leah in the palm of His hand and we continue to ask Him for her complete healing here on earth. Even though we are never excited to go back to Iowa City, we are thankful for the doctors and nurses there and their skill and wisdom in her care.

We hope everyone had a wonderful Easter. I will post again after our appointment on Thursday.

March 30, 2007

2007-03-30T08:40:00.000-05:00

Yesterday was the one year anniversary of Leah's surgery to remove her tumor. To be honest, I thought about it several times in these last few weeks, but we were busy yesterday and didn't really remember it as the anniversary until Chris called from Grinnell (where he is this week for classes again) and talked about it. What a difference a year makes! We are praying for another happy anniversary of this date in 2008 as well.

Chris is coming home from Grinnell today after finishing up classes there. We have done a great job of keeping busy during the week without him, but the house is a bit messier and I can't get as much done when I am by myself.

We had dance class this week and afterwards I took the girls to McDonalds. This is not my favorite restaurant, but it ranks near the top for the girls. Leah has decided she now likes the big tube you can climb in - Chloe had already decided she liked it and "taught" Leah how to play in it. I have had conferences this week. That means I didn't go to work until 1 on Thursday. So, I took Leah in late to school and Chloe and I ate lunch with her. Today I am on a normal schedule, but Leah didn't have school. She was dropped off at our former neighbor Esther's until my dad picks her up. She is quite excited by the prospect of a day with Grandpa Daryl and Esther is watching her triplet granddaughters, so Leah will get to play with them this morning for a while. Tomorrow the triplets are coming to our house for a playdate.

It is hard to believe that next weekend is Easter already. Time is going so quickly. That also means that Leah's CT scan is coming right up. In some ways I just want it to be done and over with. It is hard to enjoy things knowing that is coming up. We ask for prayers for a clean CT scan and a very low AFP on April 12 when we return to Iowa City. Leah looks great and she now has worn barrettes a few times, so her hair is growing, growing, growing.
Thanks for continuing to check in on us!

March 21, 2007

2007-03-21T09:14:00.000-05:00

Happy Spring! It seems it has been a while since our last post. Hard to believe that almost two weeks have passed since we were last in Iowa City. We enjoyed a wonderful spring break week last week.

On Monday of break week Leah informed me that spring break meant we were supposed to have fun. Hmmmmm....... we didn't have any big plans, but did manage to take Grandma Kathy out to the Olive Garden for a belated birthday lunch and take a trip to Marion and our consignment shop again. They just have way too many cute things. Chloe was excited to be included on one of these shopping trips, but spent the entire time looking at the toys in the sale room and not the clothes. Leah also had a massage on Tuesday that she enjoyed. And, Grandma Karen had each Leah and Chloe for one night. They were treated like princesses and taken out to eat at their favorite spots - the OP for Leah and McDonalds for Chloe. Leah had a friend over on Friday for a play date and lunch at the Rite Spot. The idea that we would unpack a lot of things was only an idea and never really happened. I hope we are not becoming too used to the boxes lying around. I hardly notice them anymore, I admit. Chris did spend some quality time in our garage organizing things and someday we may get to park in there.

This week we are struggling to get back into a routine. Leah has had some tearful mornings at school trying to tell me goodbye. She would just rather spend time with Mom and be at home -and she is tired out because she stays up late at night reading. She is no longer pretending to be reading, but actually reading -quite fluently- a lot of books. It is so fun to see her take off on this. Chloe, trying to be just like Leah, will randomly ask as she looks at books "what is that word?" Chris is in Grinnell this week at school for his new job. He will be there next week as well, so we are having some quality "girl time."

This week we have been busy with kindergarten round-up and preschool registration. Leah is definitely ready for kdg. and excited about the fall and wondering who her teacher will be. Chloe was excited as well at her registration last night. Leah took great delight in showing Chloe the toy room and telling her all about the schedule at Sonshine, where Chloe will attend in the fall.

Late last week we learned that Bethany Buzynski passed away after a two and a half year battle with cancer. Her mom and her prayer group in Pennsylvania prayed for Leah during treatment and continue to pray for her--something we take great comfort in. Looking at pictures of Bethany on her family's care page it seems impossible that someone so sparkly and alive is no longer on this earth.

People will ask us why we continue to read stories of children who have lost their battle because it is depressing and causes us a lot of worry wondering if this is what we have in store for our future. Unfortunately this is the reality we live in. It is easy to ignore the scary stories if you have never known anyone personally or had it happen to your family, but these families are much like ours and cancer or other tragedies can happen to anyone at any time. It just makes us treasure the good times we are having and not take anything for granted.

Leah's next scan/AFP draw is scheduled for April 12. Please keep her in your prayers - that her CT scan is clear and her AFP continues to be low. March 30 is the one year anniversary of her surgery. It is hard to believe a year has elapsed and that we have resumed a fairly normal life! We pray that these good times continue for her and our family, and we are forever grateful for all the support we have received and continue to receive.

March 8, 2007

2007-03-08T14:41:00.000-06:00

AFP = 2.5
Great news! That is consistent with last month's blood draw. It was 2.2 then, but if you ask anyone in the lab they will talk about margin of error, validity of the test, etc. So, we get to be normal for 5 more weeks.
We left at 6 AM this morning and arrived just before 8. However, I was a little worried when we got there and they had no orders printed up or anything. UGH! Tom and Mary Lou got that taken care of and we had the blood draw done right away. Dr. Rahdi visited with us for a while and we learned about his vacation plans and a variety of other things and then amazingly enough the blood work labs were back when I asked him to check them. So, we spent a while watching the construction outside of the windows by Elevator F. We stopped at Prairie Lights book store and met my friend, Andrea. And then we headed to CR to the Olive Garden and consignment shop. Leah is tired out because of her lack of sleep from staying up late reading every night now. She was up at 5:30 today and 5 AM yesterday (for no reason!). Tonight is the Family Fun night at the elementary school that Leah is anxious to go to. So much for an early night here.

As I was looking at Leah's appointment page that included today's date I realized that a year ago today soem friends we made in Iowa City lost their son, Kyle, to cancer. He was only 5 and a half...just like Leah is. We still check up on their caringbridge site and pray for them daily, and we know how one CT scan or blood draw can change your world forever. We continue to pray that through time they will find some peace. We are so thankful that this check-up was another positive one, yet remembering Kyle and his fight is a scary part of the cancer roller coaster we live on right now. So we continue to ask for your prayers on this journey.

Leah is summoning me to help her upstairs and I need to get a little work done. We still cannot park a vehicle in our garage-and probably won't for some time. Thanks for checking in on us!

March 5, 2007

2007-03-05T15:42:00.000-06:00

I am trying to get back in the groove of school after having too many days off last week. However, I spent the morning on hold with Iowa City Hospitals and Clinics trying to reschedule Leah's appointment. We had agreed we would come in 5 weeks at her last appointment on Feb. 8, but got the appointment reminder in the mail scheduling it for March 8. I waited until today to call and reschedule not thinking it would be a big deal. Well, after spending time on hold and finding out that Dr. Radhi was leaving the country for 3 weeks after this week I emailed him myself. He will be gone from March 11 until April 2. He needs to see her before he leaves. Maybe if I really pressured him he would agree to wait until his return, but that is almost 2 months in between visits-too long for us right now. So, we have to head down now on this Thursday. While this should be no big deal, I was completely thrown for a loop by this. I am mentally prepared to go next week-not this week. I agree it will be nice to have the visit with over a week sooner, and not worry an additional seven days. That will leave all of spring break without worrying--as long as her check-up goes well. With all of our moving and trying to settle in and the big storms, I feel like we were just in Iowa City. It certainly does not seem that a month has passed. Leah inquired a few nights ago when we would go again, and usually we try to do something fun as well on our trips. Please, please pray for a good, uneventful check-up. I know that people probably think that these check-ups should get easier over time, but they don't . Instead I think I get more worked up each time and hate going there even more. It brings back a lot of sad reminders of our lives a year ago. We are so thankful to be where we are today and we certainly don't want to go back to that type of life again.
Other than that...Leah has been busy reading up a storm. She is reading Chloe books now, and each night I read a few books to her before bed. She usually picks a few to read right back to me and does not stop until she has read til the end. Right now her favorites are the Henry and Mudge books. We are also anxiously looking forward to spring and some warm weather!
I'll update after our visit on Thursday.

March 3, 2007

2007-03-03T17:30:00.000-06:00

Wow! What a weird week! Last Saturday we were bracing for a big winter storm and were not disappointed. Our power went out around 2 PM last Saturday and after thinking about things for a while and seeing no sign of getting power back anytime soon we all bundled up and headed to our neighbor's house. We are officially in our new house which is further out in the country, but both the town of Denver and the surrounding developments were all without power, so we cannot blame our more remote residence for the lack of power. The weather was just terrible! Tons of ice and wind! All of us spent the entire evening and overnight with our new neighbor (who I happened to work with at Janesville), and then on Sunday headed to Chris' parents. We stayed there until Wednesday after I came home from school. The girls liked spending time with the Ristau grandparents and Molly, the dog. Our power was officially restored on Tuesday night but our house was all of 44 degrees so we decided we would let things heat up again. It has been great to be at our new house, aside from the fact that we have way too much to unpack yet and an enormous mess. It will be a long time before we can invite anyone over! Leah didn't have school the entire week. She is getting used to relaxing, I think, although she loves school, too. I had school on Tuesday, Wednesday and Thursday. Yesterday the weather was horrible again so we were all off. The highlight for Leah missing school this week was spending Thursday with the Schaefers since what was originally a late start for snow ended up being another 'no school' day.
In the midst of not having power and trying to get the rest of our junk moved out of our old house, Chris started his new job. They have been keeping him busy and he claims that he loves it. So, all is good!
We are hoping for a few uneventful weeks. Leah's next appointment is March 15--coming right up...they seem to come up so soon! So, please keep praying for another great check-up and very low AFP. I liked 2.2, but I would take a number lower, too.
We still don't have internet at our new house, so I am posting from my parents. I finally ordered our washer and dryer today as well. They should get delivered next Thursday. I think we are planning on going out to eat for supper and then relaxing at home. Leah shared her cold with Chris and me --she seems to have gotten over it quite well, but we are still sniffling a lot. And Reeve has had some stomach bug that includes a lot of dirty diapers and some vomiting. We are praying that she feels good again soon, too.
Thanks for your continued thoughts and prayers-we are grateful for each and every one, and hope you continue to pray for Leah's complete healing here on earth!

February 20, 2007

2007-02-20T09:38:00.000-06:00

This past week has been one of a lot of hard work and messes! We are still in the process of moving --quite a job! On Saturday Chris had rounded up some good friends (at least they used to like us until we had them hauling out tons of our junk) to help move most of our big stuff. They did a great job....the beds were set up at the new house and they managed to place everything where they thought it would be best without any direction as to how I wanted things. My friend, Julie (who used to be Leah's preschool teacher and is now going to be my personal organizer) came to help me throw away a lot. I am getting much better at tossing things, especially when I realize there is no way all of this will ever fit in our new house, and I actually want it to look nice. We are still working on a HUGE book problem. The book room at the old house has barely been touched. I have weeded a lot of books, but even with that, some may have to go to my parents until I am able to read and get rid of. Too bad I can't find more time for leisure reading. Chris is on call one last time tonight. Otherwise we have all been spending the night at our new home. This is taking some adjusting in terms of how we do our morning routine....especially right now since we have no countertop or sink in our kitchen. We also have yet to purchase a washer and dryer. Leah and Chloe and Reeve were with grandparents this weekend because there is no way we could have accomplished all we needed to with their help. Plus, Leah would have freaked out when she saw the amount of her stuff I had to get rid of (all being stored for a garage sale or to Trinkets and Togs in Waverly). When they finally got to see the new house on Saturday evening Leah was so excited. Chloe didn't seem as enthused, but she has been battling a stomach bug. I think she finally feels like herself today. And Reeve was in for her six month check-up and got four shots yesterday. Now she is the one who needs a little extra TLC. She also weighs in at a whopping 14 lbs, 11 oz. --that is actually a lot for our kids. Chloe was 16lbs, 8oz at a year, and Leah just over 18lbs at a year.

It almost feels like spring these past few days. I can't wait! Chris starts his new job on Monday, and I think we have been so busy with trying to get the rest of our stuff out of our old house that we haven't really processed all of that yet. By the way, our phone number stays the same and we are now hooked up at the new place, so if anyone calls it rings there. Our mail service starts today, trash on Friday and we are getting television and DSL hook-up as well. So, things are getting taken care of, even though we have more than enough boxes to go through.

I need to get to work, but wanted to let everyone know how our move is going. Please keep sending prayers for Leah's complete healing on earth, and continued good news from her Iowa City check-ups.

February 8, 2007 - AFP and Dance Marathon

2007-02-08T14:15:00.000-06:00

Chris, Herkey, and Leah

Leah with Tyler (Morale Captain and friend from Dance Marathon, James, Stephanie, and Roshaun)

Leah and Dr. Nancy.....14 months after first meeting, Leah lets Nancy touch her without screaming, "Get away from me!"

First of all, Leah's check-up went very well! AFP = 2.2! YEAH! Nancy (from the above picture) was back in hem/onc and saw Leah as did Dr. Rahdi. Leah's appointment was at 8, but we were done with her blood draw by then and just visited mostly. Dr. Rahdi and Nancy were done looking her over by 9, but we still had to wait for the AFP results to be back from the lab. By the time we went to buy a cinnamon roll and returned they had the good news. Leah always has plans for our Iowa City days, and this one was no different. We stopped at Coral Ridge Mall, ate at Olive Garden, and stopped at the consignment shop in Marion.

Second of all, the above pictures are from Dance Marathon. I have a few more I will need to post, but my computer seems maxed out with three at a time. The weekend was wonderful! Lots of dancing and lots of visits with old friends-only in much better circumstances. The whole event is a very upbeat, inspirational one. Chris presented to the Spirit Dancers on Saturday morning. He had a DVD made of pictures with Leah that he showed and talked for a few minutes. I thought he did a great job--especially because he claims it was impromptu and he had not rehearsed what he was planning on saying.

We arrived home tired and cold to learn that Megan Koepke had passed away on Friday night. Megan, who was twelve, had been in and out of treatment for over eight years.....her parents have been a blessing to us in our experience with Leah. We continue to think of them and pray for them and their daughters in these days, weeks, months and years to come.

As we discussed with some parents at Dance Marathon, life and your priorities definitely change when confronted with an illness like cancer. One of those priorities that has shifted somewhat or at least factors in a lot higher in importance is the time spent with our family. So, in an effort to keep 2007 as exciting for our family as 2006 was, Chris has taken a different job. Because we live at the funeral home, this also means we will be moving. So----Chris' new job is with First Maxfield-right next door to Kaiser Corson Funeral Home. He is VERY excited about learning and doing something new after 11 years at his current job. We have purchased a house in a development outside of Denver. Our new address is: 102 Summer Ridge Road, Denver, Iowa 50622. I don't have a new phone number yet, but will post it when we have that ironed out. Right now we are knee deep in painting, packing and throwing out way too much stuff. Leah is pretty pumped up about everything. Last night she helped Grandma Karen take wallpaper off in one room. We all looked out our bedroom window to watch the deer eating in our back yard. The entire back yard is wooded and there are many wild turkey, too.

So, once again we are cancer-free for 5 weeks...the next visit is scheduled for my week of spring break. We are so grateful for these happy times and pray for many more to come. In addition, we continue to rejoice in the many, many people who keep Leah in their prayers each and every day.

One last Leah statement.....as Leah was rolling her eyes at her sister the other day, she looks at me and states, "I think Chloe is hallucinating!" (Perhaps she spends way too much time with me?!... I think I may have said those very words a time or two).

February 2, 2007

2007-02-02T12:23:00.000-06:00

Today is Dance Marathon! Leah was unable to go to sleep last night because "I have rock and roll in my ears." She and Chloe are both very excited about the upcoming events. Some of Leah's nurses have emailed that they will be there, so we are looking forward to seeing them in a non-hospital setting. I am looking forward to the weekend, but not really the idea that we get to "celebrate" at Dance Marathon. I am very sure our lives would have been complete without this past year. Yet, despite those feelings.....Leah looks and feels good and last year at this time we were not so sure we would be returning with her for Dance Marathon. The plan is for us to leave for Iowa City right after work/school and return late tomorrow afternoon. Leah thinks she is staying up until 3. My sister is coming from Des Moines sometime tonight as well. Reeve is going with us although I am not sure she will enjoy herself. On Saturday morning Chris is presenting to the Spirit Dancers right before they perform and then at 9:50 we are doing a radio interview. I think it will be broadcast up in the Waterloo/CF area since people from home heard us last year. The part that Chris is presenting includes a DVD with pictures of Leah from diagnosis until now. It is set to music- the LAnce Armstrong Live Strong song that Chris received at the Lance Armstrong Cancer Summit and Girls Just Wanna Have Fun by Cyndi Lauper.

Next Thursday we go back to Iowa City for a check-up--blood draw for AFP level. Please pray for a low, low result....if you want to be specific, I would like a number under 3!

I will try to post some Dance Marathon pictures after this weekend as well.

January 26, 2007

2007-01-26T05:58:00.000-06:00

TGIF!! Time continues to fly by. The weather has seemed more like winter and now that we have had snow the girls have actually been out to play in it a few times. Leah is especially excited about this since we never let her outside to do that last year. The weeks seem to rush by. By the time we get home from school and work, eat supper and do a few things around the house, it is once again bedtime. I am not complaining! This beats last year any day. Leah is feeling good, getting some longer hair, and gearing up for Dance Marathon. That takes place next weekend. Chris is in the proces of getting a DVD of pictures made to show at DM when we present. Families can sign up for a time slot to share their story. Last year we opted out of that, but this year he has signed us up. We are also being interviewed on the radio during the weekend. Last year I was interviewed on a Friday when we just happened to be inpatient.

Leah's next appointment is February 8th. They scheduled it for five weeks from our last visit on their own, which was very nice. Otherwise I would have had to attempt to talk to someone down there about getting it changed. Once again we ask for prayers for this visit to go well --- especially for a very low AFP. We still hear from people from time to time that we may not talk to on a daily or weekly basis who continue to let us know that their prayers are still being said for Leah. I cannot even begin to explain how reassuring that is.

We continue to enjoy these wonderful times at home and are enjoying every moment of them!

January 14, 2007

2007-01-14T19:44:00.000-06:00

The girls with G.G. and the gingerbread house they made her.

It's snowing in Denver tonight....the girls are counting on playing outside tomorrow! Hard to believe it is halfway through January and we have not had any real snow yet.

I never posted again after our Iowa City trip, but we continue to enjoy good, normal times here at home. Leah is back in the school groove after Christmas break. Chloe is starting to be excited about recognizing letters in the alphabet...this is monumental for us because Chloe would much rather sing or pretend than anything else. We are almost done with the book Little House in the Big Woods, so tonight we made butter from whipping cream. The girls liked this job for about two seconds and then I had to do the remainder of the work. Leah enjoyed eating the butter with her sandwich, though. We have also been watching Home Alone and Home Alone II. Both girls alternate saying, "I'm so scared! This is hilarious!" As I type Leah is giving Aunt Suzanne a detailed (and I do mean DETAILED) account of both movies. This has been going on for over ten minutes now, and while Aunt Suzanne may be ready to move on with the conversation Leah is still going strong.

Reeve is now rolling over a lot. It is hard to believe she is four months old already.

So far we have not received our information from Iowa City about when Leah's next appointment is scheduled. We do know it will be the first week in February. I am tempted to try and schedule it for 5 weeks from our last visit, and then her appointment in March 5 weeks from her February visit. By doing that the March visit would hit during spring break and I would not have to take another day off. As it is now I have one day left to use before I run out of paid time off. So, when we get the information I will have to see if Iowa City is OK with my idea.

Already in January two young children we know of(one with hepatoblastoma) have passed away. It is a big reminder of all we have to be thankful for...and it is scary as well as we hope to never have to revisit the cancer experience.

Dance Marathon is coming up the first weekend in February. Leah has been asking about this since it ended last February. She is ready for The Big Dance....especially watching James perform with the doctors. She is quite insistent that Reeve get to attend with us, even though I am doubtful Reeve will have much fun.

We have enjoyed the first few weeks of 2007 immensely. We are praying for a healthy year and continue to rely on everyone's prayers for Leah's complete healing here on earth. It is truly the one thing that gives us comfort in this journey.

Thanks for continuing to check in on us!

January 4, 2007

2007-01-04T11:11:00.000-06:00

A quick post from the 7th floor--our old stomping grounds....
AFP = 3.4
That is just fine! Saw Dr. Rahdi and he has looked at the scans already. They look good, too. Hemoglobin is 13, platelets are normal. I must say I am quite happy!!!! We had the scan and went to the clinic knowing our blood work results would be back. Dr. Rahdi called them up on the screen and looked right to the AFP-the one number we are interested in. So, the past few months her AFP has gone from 3.6 to 3.5 and now to 3.4. We like this trend and hope it continues.

Leah is busy picking on James and seeing a few of our nurses. I can honestly say I am not thrilled to be here again, but it is OK as a visitor. The next stop is the Olive Garden and then Leah thinks we are going to the consignment shop. She still has not eaten today aside from the barium drink for her CT. This was her first time having a peripheral IV--slightly traumatic because they blew the first vein they tried so she has a nice bruise. This also prompted her to sob for them to stop. If that had not happened there may not have been any tears at all.

Leah has now arrived from her torturing of James and is ready to go eat. I may post later on from home, but for now, we are looking forward to being away from Iowa City for another cancer free month. We praise God for Leah's good health and for friends and family who continue to pray for her as well. We do not take a moment of these happy times for granted.

December 30, 2006

2006-12-30T10:30:00.000-06:00

We have had a wonderful Christmas break! The girls had a great time getting ready for Santa and anticipating what he might bring. Santa may have gone a little overboard this year, but it was worth it. We also prepared for Jesus' birthday by baking a birthday cake for Him. While we don't seem to have accomplished a great deal during our time off, we have been enjoying relaxing a bit more and not having to go too many places. Chris, Leah, Chloe and I saw Charlotte's Web and enjoyed it. The girls and I read that book earlier this summer. We also did a little socializing with some friends we had not seen in far too long. It has felt great to be normal. However, we do have an Iowa City trip looming on January 4th. This is for CT and blood work, where they will check the AFP again. I hate worrying about these visits-they seem to come around all too frequently. While in many ways 2006 was a year filled with a lot of worry and sadness, the last six months have been filled with healing and happiness. In some ways it would be wonderful to freeze time and continue as we are right now. While we know that is not possible, we continue to pray that Leah is healed here on earth and remains cancer-free. Over break I have had some time to re-read some email messages and cards that were sent when Leah was first diagnosed. I also managed to run across the notes I had to take when we were receiving chemotherapy instruction...very different emotions involved in those experiences. We continue to be grateful for our family and friends and all the prayers that people continue to say for Leah. We are hopeful for health and happiness for all in 2007. Happy New Year!

December 22, 2006

2006-12-22T06:41:00.000-06:00

The girls with Santa

Christmas is fast approaching! I wrapped a few more gifts today that are under the tree. The girls are very excited about Santa and wrapping presents. Leah has school yet today but I am on break already! On Sunday we enjoyed watching Leah and Chloe in the church Christmas program. Leah was not very excited to be a part of it and started out by pouting through their first number. After she got going a bit it was fine. Chloe enjoyed every minute of the program. She was the youngest child in it and had a great time. On Tuesday Leah had her school program. We are used to her doing more people watching than singing when she is in front of people, but she did a great job singing away. The girls have seen Santa a few times this year. This all began when we were at Disney World and he visited at Give Kids the World Village where we stayed. This past Sunday night we were invited to a supper party in Denver at the Bohlmann's and Santa made a surprise visit there. On Tuesday he stopped by Leah's program as well and he even remembered Leah's name! Chloe reminds us every day that we need to be asleep for Santa to come and we cannot come downstairs during the night. This may be tricky considering Reeve will need to eat, so we are agreeing with whatever Chloe says and then doing our own thing. We are all looking forward to Christmas break. We do not have a lot of plans, but will see both of our families over Christmas and will also do some shopping, reading, and maybe even go out to see Charlotte's Web. Chris and I will celebrate our 9th anniversary on the 27th, which is also my birthday. I might even try to get a few Christmas cards out, although mine will be more like Epiphany cards.

On January 4 we head to Iowa City for a CT scan and blood work. We have been praying for a boring, routine check-up - a clean CT and low, low AFP. Please keep Leah in your prayers as well during this busy holiday season, that she can remain healthy and cancer-free. Last year at this time we spent the entire month of December in the hospital and came home on Christmas Eve day. We are enjoying this year so much more and pray that we have many normal, happy, healthy days ahead of us in 2007 as well.

Merry Christmas to everyone!

December 11, 2006

2006-12-11T06:18:00.000-06:00

I haven't posted in a while, so thought I would write a quick update before the morning rush begins.

Last night we went to see Go Fish in concert at the Gallagher Bluedorn with the Schaefers. Supper was at the Brown Bottle before the concert--it was a great night! Good music, good food, good friends. Leah and Chloe enjoyed it, too. Leah managed to stay awake til we got home, but Chloe was sleeping before we left the parking lot. It is hard to believe it is Monday again. This week Leah is the Star of the Week at school. This must be close to being a movie star or something because she is sooooooo excited about it. Nearly every week this year she would comment on how she could not wait to be the Star of the Week, but someone else was always chosen. She has people lined up to eat lunch with her every day this week and has pictures, books and a recipe/snack to share, too.

We are enjoying holiday preperations so much more this year than last. It is hard not to remember where and what was happening a year ago at this time. In some ways that is good because we are truly more appreciative of our time together this year, but in others it is hard to think of everything Leah has had to endure. Part of this is made difficult by the fact that in this past year eight children that we know have passed away from childhood cancer. Cancer is a horrible disease-something no child should have to experience. We continue to pray for these families and for Leah to remain cancer free.

Leah is still waiting for some snow to build a snowman with. Her appetite is enormous right now-especially for things like ice cream sandwiches and Kudos bars, and her list for Santa is long. There is little else to report. We are looking forward to Christmas break and celebrating our Savior's birth.

Please continue to keep Leah in your prayers this holiday season....for continued good health and a good check-up in January in Iowa City - for a low AFP and clean CT.

November 30, 2006

2006-11-30T19:32:00.000-06:00

Reeve- 3 months old!

Chloe and her new sweater (It is my first knitting project - with a bit of help from Grandma Kathy)

Leah - dangerous with the scissors

AFP= 3.5

Things went well today in Iowa City. Once we arrived in Iowa City we checked in at the Peds. Clinic and saw Tom right away. He visited with us and then on his way by, Dr. Rahdi stopped in, too. He chatted for a while as well, and apparently that was the whole check-up as far as poking around on Leah. Since she was dancing around, poking Tom in the butt, stealing his name tag and giggling a lot, she must have looked pretty healthy. She now has blood drawn from a vein as opposed to her port. This is done in the phlebotomy lab there in the clinic. That was a bit scary at first and some tears were shed. I had put emla cream on both arms to numb them since I was not sure which one they would use, so I would like to think the tears were more over the new experience than anything else. Tom even came along to hold Leah's hand and got her a sticker when it was over. We also had a chest x-ray and a hearing test, too. Leah managed to flunk the hearing exam at school yesterday (we knew she would because she has high frequency hearing loss) and Iowa City ended up rechecking things. She still has the same hearing loss. There is one level that is better and another that is worse. The one that is worse they are attributing to her having fluid in her ears--which they checked by taking a picture of her ear while we were there. So we will have the ears checked again in three months. By the time we got back to the clinic from our two stops they had the lab results back. The whole time we were walking back from the audiology test (which is located in outer Mongolia, or so it seems) I felt like I was marching to my doom because I knew the lab results would probably be back and every possible scenario goes through my mind. Usually the ones I imagine are the not so happy ones. Everyone in clinic was happy with the AFP-- Dr. Rahdi made a point of telling me that it had gone down. I told him that I considered the move from 3.6 to 3.5 to be stable, but he assured me it was a move DOWN! And, with that we were off to the Olive Garden. Leah had an icecream sandwich (her new favorite) on the way down as her breakfast so she was starving. I had skipped breakfast because at that point I really did not feel like eating, so Olive Garden was sounding pretty good. Before leaving we did manage to run into some people we have come to know over the past year. Steph and her dad were there for a check-up and she is doing well- she had a stem cell transplant for a recurrence of Ewing's Sarcoma in February. We also ran into Megan and her mom. They are going to Disney World next week and staying at Give Kids the World. They will have so much fun!

Olive Garden was good and we had to stop at Puddlejumpers, our consignment shop and load up on some really cute clothes. Chloe scored big with a velvety black dress with sparkles all over and a rim of black and silver fur around the wrist band. Quite frou-frou.

A few days ago Leah was busy telling me that she is going to be a teacher and librarian when she grows up--just like Mom. (This is taken with a grain of salt. My mom's former kdg. students always wanted to be what their moms were, too. The year we taught next to each other I remember chuckling when Cheyenne told everyone that she was going to grow up and work at IBP and kill pigs just like her mom. Plus, we all know that when Leah is a teen ager she will want to be nothing like me, so I should appreciate this now). Anyway, Chloe was telling us what she wants to be when she grows up.... an icecream worker at Dairy Queen. That pretty much sums up Chloe.

We continue to be grateful for all the people who pray for Leah's complete healing here on earth. And, we continue to give God the glory for Leah's continued good health. (A year ago today we were in Iowa City for Leah's first surgery - port placement and liver biopsy. This past year has been a blur in many ways but we are so thankful for all that has transpired and hope we can report next year on November 30th with good news still).

So, now on to December- a dance program, church program, school program (for Leah) and lots of Christmas festivities. The next Iowa City trip is in five weeks- a CT and blood work, so we continue to offer up prayers for a low AFP and clean CT. That trip is the six month marker of the end of treatment- a major hurdle for us to cross.

Thanksgiving 2006

2006-11-23T18:48:00.000-06:00

Leah working on a puzzle of the United States.

Leah and Chloe constructing their first gingerbread house

Reeve Christina-almost 3 months old!

Happy Thanksgiving! I could write page after page of all we have to be thankful for this year..... small things like eating supper at home, sleeping in our own beds, getting to read stories together, taking walks, playing games, and also big things like Leah being in Remission and feeling and looking great, and for the birth of Reeve. It has been quite a year!

Today we did not have any big plans. We were invited to the Ristau's and Behnke's, but Chris was on call and I don't think either of us really felt like doing much. However, Leah does not really associate anything bad with the Thanksgiving holiday and we don't want her to, either. The plans were to go to church and then maybe get out Christmas decorations and see a movie. Last night Chris decided he did not feel well and probably had whatever Chloe had, so he ended up going to bed at 7 PM and sleeping all night. That means we missed church-something I really had every intention of doing today because I felt a definite need to be there. Chris still does not feel great, so he rested much of the day and I took Leah and Chloe and Grandma Behnke to see Happy Feet in Waverly. It is a cute little movie. We also played with the triplets this morning since they were back for the holiday. So, we didn't have a traditional Thanksgiving holiday, but we did not sit around and think about the past year too much, either.

We also are very thankful for the friends we have - old and new- who have been with us over the past year and continue to offer us support. Even on the worst of days we knew there were many, many people holding us close in prayer and offering their help in any way possible. Please continue to pray for Leah each and every day-for good health in this next year, and for another cancer free check-up and low AFP.

"give thanks in all circumstances, for this is God's will for you in Christ Jesus." 1Thes. 5:18

November 20, 2006

2006-11-20T09:46:00.000-06:00

Time really does fly it seems! We have continued to be busy at home and that seems to mean that I am just not posting as often. Last week Leah went to see Dr. Sims for a cold/sinus infection that has been hanging on. She had a cold on November 6 (and a few days prior to that) when her port was removed, but she was still having her eyes paste shut each night and lots of green snot, so on the 15th I decided to take her in. He gave her some Zithromax and after about 48 hours she seemed to be as good as new. Her appointment on Wednesday was just one week short of a year ago that we visited Dr. Sims and he felt her stomach. We even had the same exam room which I realized after they showed us in. I am not really superstitious, but I just did not like it at all. Dr. Sims felt her stomach and told her how good she looked. He, too, has a scar from an open heart surgery he had as a child. He told her they could compare scars except he would have to remove his shirt to do so. Needless to say, we did not see his scar.

The girls had dance class on Tuesday night and then we ate at Pizza Hut afterwards with Heather and Lis. It definitely beats cooking on Tuesdays since we don't get home til almost seven.

Chloe now seems to have picked up some stomach bug. After church yesterday she managed to change her clothes and then vomited in the living room--most of it she was able to catch in her Dora purse- much to her chagrin. She could have cared less about the carpet, the purse was pretty important, though. Aside from throwing up she appeared fine-not a big appetite, but otherwise ran around and played. I am hoping the other two girlies can avoid germs if possible.

We watched Garfield a Tail of Two Kitties last night at home. We had seen it in the theater, so with the knowledge of what was to come, Leah laughed hysterically at several parts. I also managed to cook- something I rarely did for a long time- and we had a "family supper" as the girls call them. They love it when we eat together and request that we do it if at all possible. Between dance class and Chris' work schedule it seems like it does not happen often enough.

Leah and I are still working our way through the Junie B. Jones series. There are so many books out there I want to read her, but she thinks we need to read all of these first. ARGH! We have also played several games of Sight Word Bingo. She is getting to be able to read a lot of words---more than I thought she knew, anyway. On Saturday night she read Reeve some books, and then Bernie, too. Reeve has been smiling a lot-especially for Chris and Leah. If she even hears their voices she usually gets a big smile on her face. Chloe is just not as interested in her right now as Leah is, and she also spends all day with her at daycare, so the thrill of having her around is not as great. Leah misses both of her sisters during the day and usually cannot wait to get home to see them.

Other than that, time is marching on. I will admit that in some ways I am looking forward to the holidays this year because they are more hopeful than last, but in others, they are serving as a reminder of how we spent the end of 2005. Leah's next check-up in Iowa City is on November 30 when they will check her AFP. Please pray for good news --very low AFP number and the rest of her blood work to be normal as well. This will be the first time that Leah will have her blood drawn without her port. After all the poking and prodding this girl has been through I don't think it will be very traumatic at all. Your prayers are so greatly appreciated as we continue to ask God for Leah's complete healing here on earth.

Happy Thanksgiving to all!

November 10, 2006

2006-11-10T06:09:00.000-06:00

It has been a long time since posting, which means life is moving right along and there is not much to report. YAY!!!

The girls went trick or treating here in Denver on Halloween and had a great time. They both had bags packed with candy. Leah insisted on going "lots of places." This far different than last year when she did not feel well at all. At the time we did not know why, but attributed it to being tired from school.

On Monday Leah's port was removed. Chris, Leah and I had to be in Iowa City by 8:45 on Monday and had her port accessed one last time so they could sedate her that way. Everything went very smoothly. Leah did (and still does) have a bit of a cold so I was not sure they would do surgery, but anesthesia looked at her and decided she would be just fine. Leah was so brave! She has been all along, but aside from getting a little quiet before surgery sat on my lap, talked to the nurses and was so cooperative. Surgery lasted a little over an hour and instead of the screaming child we are used to when she comes out of sedation, Leah cried a little, but was very cooperative and just laid in my lap. Within about 45 minutes she had her clothes on and wanted to see James. We did make it there, but she lost steam and was very tired out. Leah slept the entire way home and rested at home on Tuesday since Chris was off of work. The incision to remove her port is right over top of the one they used to put her port in. And, we now have her port to show everyone.

Our next Iowa City trip is on November 30. Please pray for a very low AFP reading. That date will be one year since Leah was first diagnosed. It is amazing how a year has elapsed. In some ways it seems like no time has gone by at all and in others it seems like forever. In any event, we hope we can put the events of this year behind us and that Leah can have a long and healthy life. She still looks and feels great and after we returned from Florida, her appetite really took off. Maybe it was all the icecream she ate on the trip.

This weekend we are looking forward to snow (at least the girls are). Reeve is getting bigger --she looks more filled out and is smiling a lot. Unfortunately as the third child she has far fewer pictures than the other girls, so maybe this weekend I can get some taken of her to post as well as one of Leah with her port.

It's time to start the morning rat race....Thank you for checking in on us, and please continue to pray.

October 30, 2006

2006-10-30T06:25:00.000-06:00

The girls go trick or treating in Readlyn with Cousin Drea, the toucan.

Last night we did a little trick or treating in Readlyn. Chloe really enjoys this holiday since she loves candy! Leah was excited to begin with, but ended up handing out candy with Miranda when we stopped by the house.

Chris will get back today from Austin. After a travelling fiasco to get there on Thursday, I hope the return trip goes more smoothly. He has told me over and over what a wonderful, inspiring weekend this has been. At some point he will have to blog to share the details. I do know he has been impressed with all aspects of his experience - from Austin itself to the summit and the people he has met.

The girls and I had a good weekend at home. We did not accomplish anything exciting, but it is Monday morning already and we are off to another week!

Next Monday is Leah's port removal surgery, so please pray for an uneventful surgery and for a lower AFP. Also, just yesterday Lizzie Stratton, a young lady from Nebraska, lost her battle with hepatoblastoma. She was originally diagnosed in 2002 and the disease eventually metastasized to her bones. Her mother, Sami, heard about Leah and emailed words of encouragement many times to us. We continue to pray for their family in these hard days ahead. Their website is: www.caringbridge.org/ne/lizziegirl.

October 26, 2006

2006-10-26T19:44:00.000-05:00

AFP = 3.6

Not as low as last month, but Dr. Rahdi still says all is good. It is well within normal limits, there is a variation depending on time, growth, and many other factors.....and it is not increasing exponentially, either. They did not take any other blood levels today. I was all ready to find out her hemoglobin and platelet levels, but apparently they feel she is doing well. We did not even have an x-ray of her chest like they said she would get each month. We did meet with the surgeon (Dr. Lawrence) because they are planning on taking her port out. Surgery is scheduled for November 6. That all seems encouraging at this point. However, they are quick to point out that there are no guarantees. So, please keep praying--for Leah's complete healing here on earth, and for a low AFP (of course we would like next month's to be lower so there is not an upward trend). While there were the normal people at the hospital that Leah enjoys seeing, she was rather cranky and tired today, so it was not a very exciting visit. We did see James briefly. Tom and Mary Lou took care of us in Clinic. Dr. Rahdi and Dr. Lawrence both saw Leah. They still think she looks great.

Other than that....we dropped Chris off at the Cedar Rapids airport at 8 AM. As of now (7:45 PM) he has not checked in to his hotel in Austin. His flight out of CR was delayed, and he had to find a different flight to take from Chicago to Austin, so I am rather curious how his day has gone. He has meetings all day on Friday and Saturday and then has part of Sunday free.

The girls are both staying with my mom and dad tonight. Originally Leah was going to spend the day Friday with Anna and AJay "helping" take care of Drea. To get Leah off to Readlyn and the other two to Karen's would have made my day rather hectic from the get-go. So, Leah was planning on spending her first time overnight with Grandpa and Grandma Behnke. Somehow this transpired into Chloe also going along--Leah has big plans. Today she kept telling me "Tina, we are going to have a discussion" when I brought up these plans. So, now my parents get to have a hectic morning. It is just Reeve and me. Nice in some ways, but lonely, too. I am not used to it being so quiet.

Just a few days ago I decided to clean out my emails that have been collecting for almost a year now. As I went back and read some of the messages we received shortly after Leah was diagnosed last November not only did it bring back a lot of memories, but it also reminded me how fortunate we are to have so many people that care about us and have taken time to reach out and tell us that. We might not get back to everyone who emails, but we certainly appreciate every message we receive. It is amazing to us that almost a year has elapsed. We certainly did not know what our future held and are grateful that we are still all here a year later and that Leah is feeling well. That being said, we are also becoming more aware of what a long journey cancer is. Originally it seemed that chemotherapy and then surgery would be all that was needed. Obviously we were very naive and probably only absorbed what we were able to at the time. As the months have passed we now know that even being "off treatment" does not mean the journey is done. The worries remain and the future is still uncertain. We remember other people who have gone through treatment for cancer and how we wrongly assumed that once they were off treatment they were cured. It was easy for us to put them out of our thoughts at that point. Unfortunately we now know from firsthand experience how wrong that attitude was. We continue to pray fervently that Leah remains in remission and her body continues to be cancer free. We certainly do not take a single day for granted anymore. So, please continue to keep Leah in your prayers. We receive great comfort from that fact that so many people are praying for her continued health.

October 23, 2006

2006-10-23T05:50:00.000-05:00

Another Monday already! We survived last week even though we were quite busy and the house got quite messy.

Tuesday the girls both had dance class and we had conferences for Leah. Leah is doing very well at school. Her teachers are impressed with her large vocabulary (she managed to tell them one day that she is on "shopping probation") and she is talking about words and syllables at home and is close to reading a bit more on her own. Last night she got out a Dick and Jane Christmas book and read it to us. There was some guessing at words, but she knew a lot and surprised me sometimes with what she knew. She called Grandma Kathy and read it to her on the phone and today she is going to take it to school to show Miss Megan and Miss Jenni. She is quite proud of herself.

On Wednesday it was officially Chloe's birthday. Leah managed to get up at 6:30 to help me wrap presents and then managed to get Chloe up in time to open everything before school and daycare. We went to Chuck E. Cheese's for our birthday supper. Leah was running everywhere--she was having a great time and so was Chloe.

By Friday we were tired out, but I had bought tickets for Leah and myself to go to the Mercy Me/Audio Adrenaline concert at McElroy Auditorium in Waterloo. The crowd was huge and Leah was very excited. The whole experience was new to her and we made it an hour, but it was so LOUD!! Leah told everyone we heard headbanger music.

Saturday I worked at the library, Grandma Karen and Grandpa Arlyn had the girls in the morning, and we had a brief shoe shopping experience to get Leah some boots since it appears that snow is probably coming sooner rather than later. UGH! We also spent some time with the triplets at our neighbor, Esther's house. It was Che's 20th birthday party (today is his official birthday) and both girls were very excited to be there. Sometimes Leah acts like she knows Che and other times she runs away. Saturday was the day she was all over him wanting to play with him.

This upcoming week we have our Iowa City trip.....something I dread. It feels like we just get done with one and then start to get nervous for our next one. Please pray for a very normal visit with a very low AFP number. Thursday morning Chris will be flying out of Cedar Rapids for Austin, TX. A few months ago he applied and was chosen to be a part of Lance Armstrong's Summit to fight cancer. The meetings in Austin last 2 days so he will be gone Thursday - Sunday and will know more after he is there what this entails. While we certainly wish we never had the experiences of this past year, this is a chance to do something positive with the experience we have had.

Since it is the beginning of the week I have many things to do yet to get ready for the day. Please keep Leah in your prayers - especially for her complete healing on earth.

October 15, 2006

2006-10-15T15:29:00.000-05:00

Reeve's Baptism- Pastor Feldt with our family

Chloe's 3rd birthday-eating and wearing some cake

Tomorrow is the big day- I am back to work and we are back to a normal routine. I am already dreading the morning rush, but am sure we can figure it out after a few weeks of working on it.

This past weekend we celebrated Chloe's 3rd birthday and had Reeve's baptism. Leah and Chloe were both very wound up last night for the events. In case you cannot tell from the picture, Chloe enjoyed her cake. She requested an Elmo cake and Aunt Suzanne got her an Elmo that she and Chris later programmed to talk to her and sing her Happy Birthday. Today we definitely needed some naps, because both girls were up in the night -and managed to wake everyone else up, too. Today at church Pastor Feldt asked the kids during the children's sermon if they ever whined. Chris and I looked at each other and rolled our eyes. That seemed to be the only tone of voice we heard yesterday. Leah came back and laughingly said, "he asked us if we whined?" -kind of like, "can you believe that?" She also quite happily agreed that she does.

The one other accomplishment of this past week is that I finished scrapbooking our Florida trip. That is a record for me-to get something done close to the time it actually occured. The girls have both shown their friends and enjoyed reliving memories of our time away.

This week we have Leah's first parent/teacher conferences at Discoveries. Since we see them every day I doubt there are any surprises. We are so happy that she has had a normal first quarter of school and continue to pray that she has many more normal quarters of school.

Our next Iowa City trip is October 26, so please pray for low, low AFP numbers. As reassuring as her last check-up was, it does not do anything to alleviate the stress of the next visit, because you just never know. We pray each day for Leah to be healed here on earth and to live a long and healthy life.

Leah also has a few words to say as well:
vcv/c.c?./bnv.cmcmcmvvcmb,mc,m,vmc,fm,vc
rcydhyx lkhfrnmhb,xc.;,gl;,edfl;gh,;das,l;cxd,m b mhv,.bm,ghm.cfrllgfl;,fkl;mlgmlgmlmdfklmkgl
fgmglmglkm

October 10, 2006

2006-10-10T05:06:00.000-05:00

Chloe and Leah with painted faces.

Our lunch at the Crystal Palace in Magic Kingdom with Pooh and his friends.

We are back at home in Denver after a whirlwind week in Florida. There is really nothing we would change about our trip--everything was perfect.

On Friday, our last full day there, we managed to spend almost eight hours at Disney World. We started with Epcot and took the monorail over to Magic Kingdom where we rode some of the same rides as on Monday and took in a 3-D show, Philharmagic. Chris was able to ride a few rides on his own while I shopped with the girls. We ended up mailing a box home because each day we would get a gift for both girls in our villa, plus we acquired a few things as well, and ended up with a huge amount of "stuff."

The flights back were uneventful, aside from a bumpy start out of Orlando. I am not a big fan of flying (I love looking out the window, but hate that I am not in control at all) but both girls like it. Leah still likes the escalators at the airports. When we were walking in the Detroit airport to our gate Leah was busy singing, "Give us any chance we'll take it, Give us any rule we'll break it..." from Laverne and Shirley. Chloe was busy with "who let the doggies out?"

We arrived in Denver around 9:30 on Saturday night and spent Sunday unpacking and regrouping. Our house looks like a tornado has hit it even with my cleaning. I spent Monday going through winter clothes and packing summer things away. Reeve's baptism is this Saturday night as is Chloe's 3rd birthday party. It is also Wartburg's Homecoming this weekend so we will hopefully get to the parade. This is my last week of maternity leave, so next week it is back to the real world. Even though I am not looking forward to some aspects of that, I will be grateful for each and every day we have to be a normal family- even if that means rushing around and not getting everything done that I would like.

Our next Iowa City appointment is on October 26. It seems we get done with one and can then begin worrying about the next one. So, please keep on praying for her AFP to be normal--and very low- yet again. We will meet with surgery to schedule her port to be removed as long as her numbers continue to look good. Leah's cough is also still hanging on. We give her cough medicine, use the vaporizer, but she still has a drippy nose, too. Please pray that she can get rid of this bug as well.

I will continue to post pictures of our Florida trip, so prepare yourselves. It was a week of happy memories for us.

October 6, 2006

2006-10-06T09:07:00.000-05:00

Our vacation has been wonderful! Today is our last full day here and we plan to go back to Magic Kingdom to go on some of our favorite rides again. I also made reservation at a restaurant, The Crystal Palace, for a late lunch. Pooh and his friends will be there. The girls have enjoyed this trip, too, but it is still the simple things they like the best: the carousel here at Give Kids the World (that is open all day long), or the play area at Sea World with some huge slides.

On Tuesday we went to Animal Kingdom. There we took a safari and saw some wild animals. The girls both had their faces painted. Leah was a zebra and Chloe was Minnie Mouse. We also saw The Lion King show and took a dinosaur ride. We were there almost four hours and the weather was beautiful. We saw only a fraction of the park, but four hours seems to be our time limit.

Wednesday we spent at Universal Studios and later Daytona Beach. The girls met Sponge Bob, Dora, Jimmy Neutron, Curious George and took an ET ride. Daytona Beach was wonderful and we probably could have spent a lot longer there, but because the tide was rising we had to move our vehicle. The highlight of this day for Leah was that it took us 2 whole hours to get back! Supper was Olive Garden, so Leah was excited about this as well.

Thursday we were at Sea World. There we saw a wonderful show and fed sea lions. Leah got to ride her first ever roller coaster. She just barely made the 38" height requirement. Chloe was very upset she does not come close to meeting the height requirement. We were at the Village last night for Christmas festivities. They celebrate Christmas once on each person's stay here, and we had a traditional Christmas meal, Santa visit, and presents.

Leah and Chloe have both been eating ice cream each morning for breakfast. We visit the ice cream parlor several times each day. Yesterday Leah and Chris swam in the pool here which we plan on doing again tonight. There is really too much to do to get it all done.

And, while our vacation has been great, we miss home (and Reeve), too. So, tomorrow we will pack our bags and fly out of here in the afternoon. Pray for safe travel back for us and a restful weekend so we can return to our normal routine next week. Next week is also my last week of maternity leave, so then the rat race will begin.

Leah still has her cold -drippy nose and cough-although she has a lot of energy. We pray that her cold goes away quickly and that she continues to remain disease free.

October 2, 2006 - Disney World

2006-10-02T15:36:00.000-05:00

Just a quick post....there is too much to do to want to sit on a computer!!

Our hotel stay in CR was great....we got the royal treatment from Make a Wish- a master bedroom, living room and whirlpool. Of course the kids enjoyed the pool and swimming.

Our flights were also very uneventful. Chloe's first time on a plane. She was excited and stayed awake for both flights, but did not really get the idea of flying. Leah had the window seat but preferred to read, talk, etc. She even pulled the shade. I asked to trade seats, but she informed me, "Tina, you can't always get what you want."

Right away in Orlando we had our Make a Wish representative waiting for us, got our car, directions and were on our way. Our villa is awesome. At some point I will post pictures-but they have 100 villas like this and are building 50 more. We have 2 bedrooms, a whirlpool bath, kitchen, living room....basically we could more here for good. Meals are provided. There is an ice cream parlor open all day, we canorder pizza, they give train rides around the villa, we have different activities, a pool....constant entertainment.

Yesterday we relaxed and checked things out here a bit. Today we set off rather early for Magic Kingdom. We stayed for 4 hours---Chris thought we could have stayed longer---and we could have, but the girls are tired out and so we are napping now. We did do some great rides. The best is still It's a Small World, even after 25 years (when I was here once before). Of all weird things we ran into another Denver family who is vacationing here, too. It really is a small world! Tonight we will try MGM studios and their laser light show.

Again, thanks for checking in and your continued prayers. Please keep praying for Leah's health and complete healing here on earth.

September 29, 2006

2006-09-29T18:35:00.000-05:00

Our family

Leah cuddling with Reeve

AFP= TWO! YAY!!!!! Pray, Praise and Give Thanks!

First of all, we received many phone calls, visits, and emails from people in the last week who have all told us they are holding Leah close in prayer. This means more to us than we can ever express. We would love to think that we could control what happens with Leah's health, but realize that God is in control. However, we do believe that God answers prayer and know that many, many people remember Leah each and every day in their prayers. So, please keep praying!

Yesterday Leah stayed home from school. She also missed Wednesday--somehow she managed to develop a nice cold. While it is just a cold, we know that any fever means a hospital stay AND we would like her to feel well in Florida. So, we had a few extra days of rest. She did take long naps both days and slept in, so even though she was not down and out the rest of the time, she did get a bit more sleep than normal. On Monday night when she started coughing both Chris and I started getting concerned. First of all, what most parents would consider to be the coming of a cold and what we would normally consider to be nothing more than that, we now question ourselves and have to wonder if something else is going on inside of her. I don't think you have seen two parents so happy to see snot streaming from a child's nose--then we knew it really was a cold! We have been praying for her cold to subside by the time we get to Florida so she can really feel great and enjoy our time (the rest of us will probably be sniffling away then!).

Brianna Schaefer came over to "play" with the girls after school. Both of them love the attention from someone older and had her running all over the place. I think they may have pushed their luck when they had her down on the floor pretending to change her diaper. We also had supper delivered to us from a family at church. I am eating some more of the homemade apple pie right now---the whole meal was wonderful. A few more stops from friends made our evening pass quickly-that was a wonderful blessing as the days before Iowa City visits are always a little -or a lot more stressful.

Leah and I left around 6 this morning. Chris managed to get the two little girls to Karen's this morning. As much as I dreaded the day Leah was practically giddy talking about how she wanted to see the construction outside of the window by Elevator F. She managed to stay awake until the Iowa City exit and then slept for 20 minutes while I waited in traffic to park. I am glad we were in IC today and not tomorrow! Already some TV stations were set up outside of Kinnick.

We ran into Dr. Rahdi right away in the hall. He had no idea we were there to see him and was on his way to a meeting. So, we went to clinic and promptly ran into a classmate of Leah's from last year who was there for her 6 month check-up and doing great! (I like the happy stories because it gives me something to hope for). We got to see many of our old friends- Tom, Mary Lou, Fred.... Leah's port was accessed, blood drawn and then Dr. Rahdi snuck back to examine her. Even though Leah barely says two words to him she did want to bring him pictures of herself in her leotard to show him, so he looked at the pictures I had laid out and commented again about how good she looks. We were sent to the CT waiting room where Leah got her yummy barium drink. I had brought a sippy cup along and she got started on her drink and I drank the remainder that did not fit into the cuppy. It definitely leaves something to be desired. While doing this we snuck over to the bone marrow unit just down the hall and visited with Roshaun and James. Leah was all over them--giving hugs and sitting on their laps.

Anyway, the CT was uneventful. I think Leah actually thought it was fun! Luckily they could inject the contrast in her port. Once that is removed they will need to put an IV in her each time. Not so fun, but the idea of being hospitalized for each fever is not very exciting either. (Our surgery consult is scheduled for our next visit). The whole CT took about 5 minutes---so much shorter than when we do general anesthesia and stay all day. They gave her a few treats and we were on our way. As we passed the waiting room who should we see but my principal and her husband. It turns out I had a class with him when I went to Wartburg. Somewhere in the span of events we went back and forth to Bone Marrow, stole James' nametag, ate a cookie in the cafeteria and tried to find somewhere to get reception on our cell phone to call people. When we stopped back at the clinic, Nita, one of the PAs there had our lab results and expressed that things "looked perfect." I cannot begin to tell you how relieved I was to hear the number 2! Just yesterday I was reading Lisa Whelchel's latest newsletter. (If you didn't grow up in the 80s, Lisa Whelchel played Blair on The Facts of Life and is now well known for her evangelism work). In her newsletter she discussed how good God was and how he is huger, better, bigger than we are and how we should let God surprise us with his goodness. I tried to remind myself of this on our ride down-that instead of thinking of all the bad scenarios and what ifs, I could think of some positive what-ifs knowing that God is good and being happily surprised was also a possibility.

Having such a good day at the hospital, we decided to hang out a bit longer and met my co-op student from last year who is now a student at the university. I introduced her to Prairie Lights Book Store and then we watched Leah play at the ped mall playground. Leah also managed to drench herself in the fountain there--it is probably a good thing I brought along some extra clothes. On our way home we stopped in CR/Marion at our favorite consignment shop. Leah is a great shopper so we have many new purchases--the best is a pair of black leather pants for Chloe. Leah discovered a lovely pink fluffy coat. I could live without it but the way she ripped it off the hanger and rubbed it all over and wore it around the store let me know it was truly her heart's desire, so we are now the proud owners of this fuzz-ball coat.

Tonight we can finally begin to think about the fact that we leave tomorrow to stay in a hotel for our Florida trip. Our flight leaves at 6:23 AM on Sunday morning. Please pray for safe travel and a wonderful trip of happy memories for us. We will all miss Reeve, although Leah told me today that we would be so busy we would forget about her, but know she is just fine at home.

Leah wants to add her two cents worth again--it seems when she does this she presses some weird buttons and the blog ends up halfway down the page, so we shall see if we can fix that problem this time!

.lp,l,..

September 25, 2006

2006-09-25T16:05:00.000-05:00

Another week has elapsed. That means we are just four days away from our Iowa City trip. Leah is going to have her CT without sedation this time---that means she will do the barium drink on her own instead of being intubated after she is anesthetized. This also means they may put an arterial IV in for contrast while she is conscious as well. The recovery time will be soooo much better than when anesthesia is used, but I am not looking forward to any of this. And, of course we will have the dreaded AFP taken as well. So, say big prayers for some good news-- a clear CT scan and very low AFP number.

We leave for Florida just the day after our I.C. trip. Make a Wish has a hotel room reserved for us in Cedar Rapids on Saturday night since our flight leaves on Sunday A.M. at 6:23. We have a layover in Detroit (Leah thinks we may run into Tim the Toolman Taylor from Home Improvement since he lives there) and then on to Orlando. Last night our Make A Wish sponsors dropped off a packet of stuff. The girls have been excited and I am starting to get a bit excited, too. I am not very happy to leave Reeve, but she will not know the difference, and this trip is definitely something Leah deserves---although after what she has had to endure I don't think there is any way to make that up to her.

Our week consisted of dance lessons and a trip to Pizza Hut, taking a tour around Wartburg wtih Lis, playing with Grandma Kathy and Grandpa Daryl, getting to see Drea, and a visit to Kids Kingdom with Grandma Karen and Grandpa Arlyn. School is taking up a lot of Leah's time-she is just not used to that yet. She likes it when she is there, but she also enjoys being home-probably more than she would normally because I am still at home all day. The tears in the mornings have ended, thankfully, but we are still struggling to get ready in a timely manner-if that is possible. I hate being frustrated each day, but if it isn't Leah procrastinating, then it is Chloe. I remember my mom starting off the year letting us ride with her in the car, and quickly -after we made her late and had our usual fights- we ended up riding the bus to school the rest of the year so we did not get her day off to a bad start. I can certainly identify with that now.

We continue to enjoy wonderful fall days and being able to be at home together. Leah's hair is growing quickly now-it is coming in quite thick! We are trying to convince her that we could use some gel, but she is not in for that, yet. So, some days her hair looks better than others. We smile at every bad hair day-grateful that she is growing some back and hoping for a day of barrettes and pony tails again.

Please continue to keep her in your prayers-especially this week as our Iowa City check-up is certainly in the back of all of our minds. Leah also wants to blog a message for you--so I am turning over the keyboard to her:

lle3ujbnbjenhjewhii3o9ujnfjnd n vbfjnunjenjnv n3674 77877648723876376jknjknnm,nrfljuhbhbbemlkihgubg
vgkjnbbhmtkmnrkgnrjnnnflnkrnknitbbnmjgkkgkkgjkjgki5959958948
njknfjkkgjkgjkgn
leah

September 19, 2006

2006-09-18T09:04:00.000-05:00

The Dancing Girlies

Here are the two princesses in their new dancing outfits. They have lessons again tomorrow night and cannot wait.

We have had a busy weekend--Saturday was a golf outing in Dike at Fox Ridge in memory of Brady Dove who fought childhood cancer and passed away in 2004 and in honor of Cecelia Lopez who had a neuroblastoma and is in remission. Chris had signed up to play in the event and then was asked if Leah wanted to release a dove at the opening ceremony. Brady's mom, Laura, has talked with me and emailed me different times and was very helpful in getting me names of people who would help with blood draws at Covenant. Chris was very impressed with the whole event and plans to participate next year as well. I came with the girls for the opening ceremony so Leah could do her duty and release a dove and then we left to come home for nap time. The lady who talked at the opening ceremony asked if Leah could wave to everyone and say "hi"--and much to my surprise, Leah did a great job and did just what was asked. I remember a time not very long ago when she would have crawled behind me and hid. I found the event to be very impressive, but also very difficult emotionally as well. We certainly wish that our daughter didn't have to know about cancer or chemotherapy, but we continue to be thankful to the families that have gone through this who continue to reach out to us and truly know the emotions that we feel.

Friday night (sorry-I am backtracking) I took the girls to the Denver football game. We were all ready to walk out the door when Chris got a call for work. So, I just decided that we would be fine up there and talked to the girls on the way up to the game about needing to cooperate. They had supper at the game and then we ended up staying until halftime. The big thrill was the marching band. Chris asked me when we got home who Denver was playing and what the score was. I did know that no one had scored, but I was not very sure who they were playing --or even what colors their uniforms were. Guess I was too busy socializing.

Reeve's two week check-up was good. She weighed 7lbs., 1 oz, so she is bigger than her birthweight. When comparing the girls' birth announcement pictures to her, they all look very much alike. Leah also did a great job with her port being flushed. She does not like it and I hate the look of pain and sadness in her eyes when it happens. Georgie tries to make if fast, though, and get it over with, and we ended up going early and avoiding taping her port site at all because we put the Emla on at Covenant and just placed gauze over the top.

So, it is 10 days until our Iowa City trip. This is for blood work (AFP reading) and a CT scan. We are going to try the scan without sedation. Now that I am not pregnant I will stay in the room with her during the scan. It is probably less painful/invasive than the echo, but the machine might look scarier to her. She does have to drink an awful tasting barium drink before this which is another problem we have had in the past. So, please, please pray for all the tests to go quickly and for very low AFP numbers and a clean CT scan.

The Iowa City trip is looming at the front of our minds, but at the back of our minds is the Make a Wish Trip we will be going on. Leah's wish is for at trip to Disney World, so October 1-7 we will be heading to Florida. My sister, Suzanne, will be staying with Reeve, and Chris, Leah, Chloe and I will be enjoying some warm Florida weather, Disney World, Universal Studios, Sea World, and having a great time. We are excited about this -especially Leah and Chloe (I am finding it hard to get excited yet until after the I. C. trip). Leah knows how to type the websites for all the locations in on the computer and has done a bit of research herself. We received our initial packet that tells us that we will have a two bedroom, two bathroom villa -- this is a much better vacation than we would have ever gone for ourselves!

My days of maternity leave are passing quickly. I have a list that is getting longer of things I need to get done while at home--including planning a baptism, getting Chloe's birthday party figured out, and scrapbooking, cleaning, and even thinking about Christmas. We continue to thank God each day for having some "normal" things to think about and being able to spend time together as a family. We ask that you keep Leah in your prayers--for her complete healing here on earth and for an uneventful check-up in Iowa City.

September 13, 2006

2006-09-13T10:42:00.000-05:00

I have tried to post pictures, but for some reason am not having much luck. Perhaps later I will get that job done. For now, just wanted to quick update about our last week.

Reeve is getting bigger. We have a 3:00 appt. today for a 2 week check-up.Leah and Chloe both love to hold her and talk to her. Leah is famous for cooing at her and telling her, " I am your big sister. You are the most perfect baby. I will teach you everything!" She always has big smiles when she says all this. Of course, this is exactly how you want your kids to love each other, yet it also makes me pray extra hard that Leah is truly around to teach Reeve everything as she is planning to do.

The girls had their second week of dance lessons last night. They still enjoy them, so the shoes, and outfits are actually getting used. Last week Wednesday we went to Target to get leotards. Somehow Leah just could not understand why Chloe would get a Leah-tard. Duh. So, at our house we have Leah-tards and Chloe-tards. They feel like princesses when they put them on.....right away they got the tags off and turned on music and danced. This has happened several times already.

Other than that....a good week. We have been out and about-shopping, taking walks....Leah had her first ever birthday party she enjoyed. Today I am picking her up to have her port flushed. She has not said much about it after her initial dismay over this activity. She knows she is getting out of school early to do this and that she gets to go to Reeve's appointment, so perhaps that helps.

We are still praying for very good results at her Sept. 29 appointment.....that means clear CT scans and low, low AFP numbers. Please keep including her in your prayers as well. Check back in a day or two for pictures.....the girls posed with their dance outfits on and Reeve is changing already!

September 6, 2006

2006-09-06T11:44:00.000-05:00

Leah cuddles Reeve

Leah dancing

Chloe's olive snack

While our schedule (especially bedtime) needs some refining, we are adjusting quickly to life at our house with three children. So far Reeve's favorite activity is sleeping, so she is fairly easy to take care of. The girls are both great helpers as well. The one traumatic occurence is leaving Leah at school. She would love to stay home now since Mom and Reeve are there, so there have been some tears in the mornings as we say goodbye. I know she is fine as soon as she gets going, but it is still hard to go through each day. I have enjoyed walking her to school and taking Reeve in the Baby Bjorn and Chloe in the stroller. Then I drop Chloe off at daycare and come home- supposedly to get some rest. I have yet to take a nap despite my best intentions. However, I cannot report any other great projects I have completed, either.

Last night I took the girls to dance lessons at Kinetic Energy in Waverly. I had intended to start Leah in dance class last fall and procrastinated for a bit, and then she was diagnosed in November, so we never got started. They are in different classes, and both loved it. When we were there it was hard for me not to compare Leah to the other kids in her class. In some ways she is just like them-giggling, running around, but yet she seems so much older to me in so many ways. While I can no longer imagine what her life would have been like if she had not had cancer, I still cannot help being angry from time to time and wondering how this ever happened to us. Maybe it will always seem unbelievable.

For the most part we are enjoying very normal, happy days here at home. Even the addition of Reeve has been a relatively smooth transition-perhaps because of the year we spent in Iowa City and how hectic our lives were then. We have to go to Covenant next week to have Leah's port flushed so it does not clot. I mentioned this already this morning-just to prepare her a bit, and this was met by some real concern and tears. Leah has been so tough and uncomplaining during much of her treatment, but I know she has so enjoyed being normal and to return to have more people poking her just reminds us all that we are not normal yet. The whole procedure should take a minute or two and she has been through it many times, yet for some reason this was quite upsetting to her today. I did make Reeve's two week check-up for the same time, so Leah will get to be along for that and should enjoy that aspect of the day. And then we hope to be in Iowa City on Sept. 29 for a routine CT scan--that we pray for each day shows no new metastases and allows Leah to have her port removed--and also a very, very low AFP. We still are touched each day by people who remind us they continue to pray for us and for the people we still notice wearing their Love for Leah bracelets. Before cancer entered our lives I remember thinking that remission meant much more than it really does now that we are living with cancer in our lives. Leah still has a long road ahead of her and we are still in need of prayers each and every day.

Reeve Christina Ristau

2006-08-31T21:10:00.000-05:00

The Ristau Sisters: Leah, Chloe and Reeve

Reeve Christina Ristau
Born 8-29-06
6lbs, 9oz.
20.25"

Leah and Chloe are excited to announce the birth of their baby sister, Reeve. Chris and I enjoyed a happy occasion at the hospital for a change and we are doing well and are enjoying being home today. I went to the hospital on Tuesday morning to be induced and after things got started at 10:30 AM, I got my epidural at 12:30 and Reeve was born at 2:06 PM. She has a lot of dark hair much like the girls, but also has her own look to her. The girls were very excited to come to the hospital and meet her on Tuesday night. They also visited again on Wednesday morning and came again for supper that night. Things went quite smoothly and it is still amazing to us that we have another child and are home already. With everything that went on with Leah, this pregnancy did not receive a lot of attention even though we were/are excited about our newest addition. The girls have been looking forward to this for quite a while now and I have two great helpers.

The quotes of the day occurred at the hospital yesterday. After being there for five minutes yesterday Leah looked at me and said, "You know, your tummy is still fat, Tina." Then five minutes later when I took Chloe to the bathroom she looks at me and asks, "Do you have another baby in your tummy?" Oh, well. By Baby #3 I have low expectations for my appearance immediately after having a baby. The only thing I will say is that I am fully prepared and looking forward to the day I can hit the treadmill again.

We have said many prayers of thanksgiving for an uneventful birth and a beautiful new baby. We also continue to pray for Leah's health to continue as we celebrate many happy occasions in our family and are enjoying some sense of normalcy. While our days here are seeming hectic as we try to adjust to our new routine, we continue to be grateful for all the people who keep us in their prayers and faithfully check our blog to keep updated on our family and Leah's health.

August 28, 2006

2006-08-28T20:04:00.000-05:00

Leah the school girl with sister Chloe

Leah has survived and enjoyed her first week of school. I thought she might be nervous/scared her first day, but she told me later that she was just excited. She seems to be getting along fine and has a lot to report at home as well about what goes on during the day. Considering the fact that she has gone from no schedule--or a very loose one during the summer- for bedtime and getting up, she is doing a good job of waking up in the morning, getting dressed, eating breakfast and getting out the door so Mom is not late to school. Chloe is also doing a great job of adusting back to full-time daycare. There have not been any tears yet when we drop her off, either. Both girls are very excited to see the other one by the end of the day--for a few minutes. They love playing at home together and have plenty of time to still get a few good fights in during the evening hours. While I cannot say that I was excited to get back to school, I have appreciated how wonderful it has felt to be back in a routine (even if it is busy) and work at something I enjoy. I will admit that both Chris and I still check blogsites each and every day and cancer is still a very real part of our daily lives. We have heard from others that it will take time for this to stop being so all-consuming. We pray we reach that point and that Leah is healed and that our lives can move forward-and while we will never have the lives we once did, that we can find some positives from this experience and ways to help others.

Other highlights of the past week include Denver Days. (This probably does not rank up there for Chris or myself but it does for the girls). We were able to watch the parade on Saturday, walk down to the midway that evening and attend Praise in the Park on Sunday. On Friday night we missed the fireworks which was a bummer to the girls. We ended up having a family movie night and watched Arthur's Missing Pal. Leah and Chloe laid out blankets and pillows and requested popcorn with M&Ms (I think Roshaun turned Leah onto this). We turned out the lights and all watched the movie together. Somehow this movie kept the girls on the edge of their seats because they were just sure Pal was going to have something bad happen to him. I think I dozed off somewhere in the middle.

Our next Iowa City appointment is on September 29. This seems so far away right now. It is the longest we have gone without a trip there and while that should seem great, it is also a bit worrisome. Iowa City is a safety net of sorts and while they are watching and monitoring things daily or weekly it feels a lot more comfortable and a lot more like we are in charge of what is going on than when we have 5 weeks in between visits. However, it is plenty of time for everyone to keep praying for a very low AFP and good, clear scan results. Dr. Rahdi has mentioned that if this CT is clear we will talk about removing Leah's port after that visit. We continue to rely on everyone's prayers and are so grateful that so many people continue to remember Leah each and every day.

Birthday Party

2006-08-21T06:09:00.000-05:00

Leah and her cake

James and Stephanie (Polka Dot) from Iowa City came up to help us celebrate!

Leah had a great birthday party! We spent Sunday going to Hy-Vee and trying to prepare for the day. We attempted nap time but Leah was too keyed up to actually sleep. Chris took James golfing in the morning. His arrival was the first Leah knew he was coming. At first she had to act shy, but once he came back from golfing she cuddled right up to him. He got to see her bunk beds, photo album, toys-the whole tour. Stephanie, one of Leah's nurses, also drove up and had the same tour. Leah enjoyed her party and all of her guests--and gifts! She plowed right through unwrapping them so quickly, though, that it was hard for anyone else to know who she got what from. Later today I will have to sit down and look at it all again. Last night was a late night-and today is the first day of school. James and Steph stayed for a bit after everyone else left last night and we talked about different memories of Iowa City. We did not enjoy our time there, but despite that, we did make some good friends, and even can laugh about some of the things that we went through during our stays. (Of course we would like to never stay there again and just have the memories!) If we think back to a year ago and Leah's fourth birthday, we certainly never envisioned all the events of this past year. It is hard to remember how easy life was back then and how we never gave a thought to IF we would celebrate birthday number five. It has certainly taught us to appreciate each and every day, and we continue to pray for there to be many, many more birthdays for Leah.

Since it is our first morning of trying out a school routine, I must go get the girls up. I doubt this is well accepted by either of them. Please keep Leah in your prayers for continued good health, low AFP numbers, and for a wonderful, normal school year.

August 17, 2006

2006-08-17T19:48:00.000-05:00

The Happy Birthday Girl--5 years old!

I finally got one picture on the blog, so we won't press our luck today.

This morning we left at 7:15 AM for Iowa City--and drove in pouring rain almost the whole way. Chloe stayed at daycare and Chris worked, so it was just Leah and me.

We did not get there early for our appointment, but ended up waiting, which we don't usually do. Tom was Leah's nurse and accessed her port. Then we saw Anubah, one of Leah's favorites from staying on the floor who is now a second year resident. She looked Leah over and then came back later with Dr. Rahdi. Leah has grown another half an inch--making her 38 inches tall (she was 37 inches when treatment ended in June). She is 31 pounds, so has lost a little weight, but everyone thinks she looks great. Her hemoglobin is up to 12.3 which would explain the energy she continues to have. Leah had another chest X-ray which I found out she will have at every visit. Just another way to monitor if anything would be in her lungs since they only scan her once every three months. Leah is getting good at X-rays-a long way from her tears in December. She lets them snap their pictures then looks at them with the techs after they are done. Those looked good as well. The AFP is never done very quickly so we had to eat lunch while waiting for the results. Much as I want to know, I also don't want to know. So, even though Leah really wanted to visit James on the 7th floor, I made her stop by the clinic to find out our lab results. Tom looked them up for us....the AFP is 2.6, just up a little from last time, but still normal. Dr. Rahdi came to discuss them with me and told me that Nita, the nurse that he works with made the comment, "Her mother should be pleased with those results." To which Dr. Rahdi replied, "You don't know her mother!"Of course all I could see was that the number had risen, but we have been told numerous times there is a range of normal (0-9) and obviously the number cannot be lower every single time. Other factors, like growth affect the AFP, so Dr. Rahdi is not concerned and told me not to worry. I'm sure he knows I will worry, and will do a lot of praying, but 2.6 is still a very good number.

After finding out lab results we headed off to see James. Leah was very cuddly to him and just wanted to sit on his lap. She still does not know he is coming to her birthday party. We had an echocardiogram scheduled for 1:30 that we went to next-Leah did an awesome job! Her first echo. did not go so well, so the last two were under sedation during CT scans. Today, though, we were in and out of there in 20 minutes. This is to monitor damage to her heart from chemotherapy. I asked how often this test will be administered and it is only every 2-5 years, so I think we won't be doing that again for a while, even though it went smoothly.

We had to stop back in the clinic before leaving and when Tom asked Leah for a hug she ran right up and sat in his lap. This is such a far cry from her behavior when all of this started. Much as I wish we never had this experience or that Leah would be so familiar with all things medical, it is still a good feeling to know that she cares about the people that have helped to take care of her and feels safe with them.

I had one brief discussion with Dr. Rahdi that I told Chris was maybe the nicest thing he has said so far to us. Somehow we were on the topic of recurrence/relapse and I told him I did not want to know at the same time he told me he was not going to discuss that with me. He reminded me that Leah had a high risk disease, but people have survived high risk diseases and at this point we have no reason to believe that her cancer is ever coming back. So we will just take it one day at a time and if it would ever come back we will worry about that then and treat it at that point. Ok, so maybe that is not the most uplifting conversation, but it is honest, and at least not a prediction of doom.

After coming home Chris and I took the girls to the circus here in Denver. While Chris and I were not that entertained, the girls were. Leah has really developed more of a "no fear" attitude and rode the horses and camel. Chloe rode the horse, and would have been on the camel in a heartbeat if we had let her. Now we are trying to relax a bit before bed. Tomorrow we are having a new vanity put in our bathroom so I should attempt to pick up a bit.

Our next appointment will be at the end of September. I am glad we are not going back before then but that seems so far away right now. All we have until then is to get her port flushed once at Covenant so it does not clot off. It will be a nice 5 weeks to get back into the school groove and a normal routine. Please continue to send your prayers for a very low AFP in September and Leah's complete healing on earth.

August 16, 2006

2006-08-16T14:58:00.000-05:00

Leah's birthday was yesterday....I meant to post pictures, but our computer is not cooperating today. We had a good and busy day. As soon as I mentioned the word "present" to her she was up and out of bed and down the stairs. So, she managed to open all of her gifts that were arranged inside and then I mentioned there was something outside waiting for her. Chris had stayed up to put together a trike for her- one just like Chloe's. Even though she has a bike that she rides she still likes to ride with Chloe and this should eliminate the big fights over who gets the one trike. It was fun to see the surprise on her face when she saw both trikes lined up and realized there was one for her. During the morning we went to daycare to bring treats for the kids and did some playing outside. We also managed to get to the drug store and get some photographs ordered. The people there sang to Leah for her big day.

We did take a nap because we went to Chuck E. Cheese for supper and then goofy golfing. Leah was quite hyper for Chuck E. Cheese. We have not been there in so long and she loved it. Chloe also enjoyed it-especially the Teletubbies ride. Goofy golfing was a new experience for the girls-both thought it was fun, even though 9 holes would have been sufficient. We were so tired when we got home that both girls said we could skip reading before bedtime--that rarely happens!

Today we slept in a bit later and then had lunch at Olive Garden with my co-op from last year at Irving. After coming home we went up to the school so we could meet Leah's new teachers at Discoveries. I cannot believe we start school on Monday! Leah is ready to be a normal kid again---and we pray every day that this will happen for her.

Tonight we have swimming lessons, and then early tomorrow we head to Iowa City. It will be a long day because we have an appointment with Dr. Rahdi at 9 and then an echocardiogram at 1:30. So, a lot of waiting around. Please, please pray for a very low AFP number. It has been good to be busy this week even though this trip is always in the back of our minds.

Leah's birthday was a great celebration for us. From the day of diagnosis we were never sure we would get to see Birthday #5. It is hard to remember how easy and worry-free our lives were last year at this time. Now we cannot take a single day for granted. We continue to pray that Leah has many, many more birthdays that we can celebrate with her and that we can put the seven months of treatment behind us eventually.

Please continue to hold Leah in your thoughts and prayers- that she may have a happy and healthy and NORMAL five year old year--and that we may receive good news in Iowa City tomorrow at her check-up.

I will post some birthday pictures soon as well!

August 9, 2006

2006-08-09T18:52:00.000-05:00

Leah is showing off her fingernails after our trip to Jiva Salon yesterday. Both of us had massages as well--they felt great! In case you cannot tell, there are gems on each fingernail with purple glitter polish.

Our days of summer vacation are quickly ending. School begins on the 21st for us. Leah will start Discoveries, an all day preschool program in Denver, and I will go back to Irving as the media specialist. The routine will be good for us, and we have started trying to get back in the swing of things by doing bedtime a bit earlier and using an alarm clock in the morning to wake up. The first day Chris was unaware of this new plan, so the Dora alarm clock (the kind with 2 big bells on the outside) was quite stunning to him as well. Unfortunately, even though it is loud, the girls take quite a while to even acknowledge it at all.

Leah's birthday is still coming up and she is counting down. We are hoping that for our big party on the 20th a few nurses and James will be coming from Iowa City. That will be a big suprise for Leah and it will be fun to see her reaction to this.

Today I went back to school briefly and Leah and Chloe both went to daycare-the first time they both could do this together since last December. The same crew was there, and I think Leah enjoyed the time of playing with her friends and seeing Karen. Her other thrill of the day was that I had new book order forms for her to look through. She is a good shopper and found a lot of new books that she "needs." We have made a good start of reading Charlotte's Web as well--she is sure Wilbur will not be killed because the farmer loves him (yeah, right).

We go back to Iowa City on August 17th for blood work --- an AFP reading. So, keep praying for really low numbers......we really like 2.1. She will also have an echocardiogram that day to watch for heart damage. She seems to feel great here at home and has been full of energy. We have done a lot of bike riding, trike riding, and have even been to the park a few times and done some hard playing there. We continue to be thankful for the thoughts and prayers of so many and hope you will continue to remember Leah each and every day as we continue on this journey. (P.S. thank you to the prayer circle in Pennsylvania for your prayers and the medal of courage--something Leah has a lot of!--we hope you continue to pray for her and her good health to continue).

Our next post should be about a BIG 5 YEAR OLD LEAH! We will probably bore you with some pictures as well. I know I promised I would not continue to post them, but Leah informed me that "people can see how cute I am!"

Another quick comment....Leah is quite interested in reading, so the other day she was looking at an old People magazine with the headline "I'm Gay!" She looks at it and asks me, "why does it say, 'I'm Gray?' " Thank goodness she cannot read everything with great accuracy yet!

2006-08-01T18:59:00.000-05:00

My two girls! The shirts say "Mommy's Shopping Buddy" which I guess they both are. We had a good time at Target yesterday picking those out along with new black gauchos. Quite the fashion statement they made today.

We don't have much to report here--no news is good news. We do have a blood draw at Covenant on Thursday and Leah is enjoying being off her medicines. I have been scrapbooking-and catching up a bit with it, although I will never ben totally caught up. I even started doing the book blog again for the Des Moines Register (I am having some problems editing it right now), which feels good to be taking part in some normal activities. The girls are best friends one minute and worst enemies the next. Yesterday I made them both sit in time out for hitting each other and Leah almost went into hysterics because I made them miss their flight to Montana. I told her several times that in making things up you can change the flight time to whenever you want, but she did not buy that at all. We are going to start practicing going to bed at a normal time and getting up in the mornings because school will be a rude awakening. We have not had to rush around the house and get to daycare/school since November.

We have 14 days left til Leah's birthday, so today we ordered her cake from Hy-Vee. She chose Dora, of course. Chris happens to be off on her birthday so we will go to Chuck E. Cheese on the 15th (she has been wanting to go there for months, but we have avoided it because of germs), and then our family party on the 20th.

This update is probably short and boring-but that is the best kind! Please keep sending your prayers for Leah's complete healing here on earth.

July 28, 2006

2006-07-28T08:24:00.000-05:00

Pool time on Thursday! The Denver Pool is back in business and Leah, Chloe and Chris had a great time playing in the water. (I also promise that I won't put new pictures up each time I post, but we purchased a digital camera this summer to record some happy summer memories and I am enjoying using it).

We left for Iowa City at 6:45 and got there in time for our appointment. There was some confusion at first whether we would be seen by anyone or just having labwork done, but of course we were planning on a visit with Dr. Rahdi. Leah got to have Tom as her nurse and he quickly accessed her port, drew blood and then removed the needle. Then we got to sit and wait for the results to come back. Obviously this is quite stressful. Chris and I did not even talk about it ahead of time, but the results are so critical that days before these visits the level of tension and concern is much higher, and it is always in the back of our minds. Even though we will always worry over AFP numbers, it will be wonderful if we can get several normal readings as the months pass by. So, while we waited, Dr. Rahdi checked Leah out. She was probably her most conversant and happy he has ever seen her. He looked at her Montana pictures, felt her stomach, and then discussed things with me.

Leah does have some damage to heart function from her last chemo. drug, doxirubicin. They are monitoring this through routine EKGs that are performed. Right now they are hoping that this damage will be repaired over time. We even had a chest xray yesterday as a precautionary measure. We discussed the risk of a second malignancy due to chemotherapy drugs, which of course exists. So, happy topics-NOT. The AFP result was not even back right away so we visited James who was working on the bone marrow floor. Leah was busy abusing him--we hope James was able to make it home last night after his most recent beating. He thought Leah looked great and could tell a difference in her energy level and happy personality, too. She giggled and ran after him for quite a while. Then finally after I could delay no longer we returned to the clinic to get our lab results. Dr. Rahdi was pleased to tell me "good news and more good news." Even as I entered the clinic Tom was giving me the thumbs up signal for our lab work. Leah's AFP is 2.1. What a great number! As Dr. Rahdi pointed out, my AFP and his might both be higher than that because normal is 0-8.9. And, her electrolyte levels are balanced, so we are going to try to stop all medications. That means a blood draw next Thursday at Covenant to check and make sure things are still OK, but that will seem great to not have to give daily doses of different drugs. We are still on bactrim for a few more months-just Mondays, Tuesdays and Wednesdays. Interestingly enough, port removal was mentioned, too, for a few months in our future if things continue to go well.

We feel we are certainly witnessing the power of prayer firsthand and ask that you continue to offer prayers for Leah's continued healing. A few weeks ago at church Pastor Feldt's sermon centered on the topic of miracles. He discussed how often we ignore things that happen today and don't recognize miracles anymore. All I kept thinking was that there is no longer a day that goes by that I don't recognize that miracles can happen and watching Leah run around feeling normal is truly a miracle.

We did manage a bit of shopping and lunch at the Olive Garden. We stopped at Barnes and Noble after lunch in Cedar Rapids and Leah picked out a few items. We have been reading a chapter book at night now and are working our way through the Carolyn Haywood Betsy books (the original copyright dates on them are the 1930s so sometimes we have to do a bit of explaining). At first Leah was skeptical of reading such a long book, but she is quite into it now. Anyway, she wanted to pick out a new chapter book and ended up picking out Little House in the Big Woods. I never really thought about how she arrived at her choice because I was looking at something else when she chose it. Later on at home I told her babysitter that she had picked out a new book to which she then supplied the title. I asked how she knew what it was called and she informed us that it said that on the cover. Chris and I have caught her reading different things now for quite a while, but when asked to read a word for us she gets very annoyed. She also told me she wants to read it "quiet in my head like you do." So, she was very serious about finding a quiet place and telling me which page she was on. I doubt she is getting anything out of it except she did pick out a few words for me or ask me questions about something she read and I would have her show me that phrase or word in the book. As a school librarian who is never without a book herself what could be more exciting to see in your own child?

As you can see from the picture, we did go to the pool, too, and even the farmer's market in town. Both girls are still in bed but it looks like another gorgeous, hot summer day here. We are supposed to meet our friend, Heather, for lunch. I should start scrapbooking again, too because it is less than a month until school starts and I have plenty to do.

Please continue to remember Leah in your prayers as she continues to do well and enjoy each and every day!

July 26, 2006

2006-07-26T09:55:00.000-05:00

Leah and Chris are back from Montana! This picture is of Leah at the airport being greeted by Chloe. Chloe was quite excited to see her sister (and dad) again. She and Leah held hands in the airport. Within an hour of being home they were playing dolls and fighting, and eventually having some time outs for hitting each other. So, I guess life is back to normal.

Chris and Leah had a busy time in Missoula. They spent a lot of their time outside and Leah looks tan, although it is Chris who really looks much darker. Some highlights include a rafting trip, picnics outside at various locations, shopping at Rockin Rudy's, icecream at the Big Dipper, an outside movie on Saturday night, a trip to a local waterpark, and playing with many of Randy's neighbor kids. The plane ride was also exciting, although, the escalators at the Minneapolis airport seemed to be the focal point of the whole flying experience.

Leah is happy to be home and after five days I can certainly see some more signs of hair coming back. She and Chris were somewhat surprised by all the cleaning/reorganizing/and digging out of trash that was accomplished in their absence. They both had been forewarned that this would occur, but I am sure it was still somewhat surprising. Leah's exact assessment was, "this is impressive." The living room has a new arrangement along with some new furniture, the basement has been mopped, shop-vacced, scrubbed, and a lot of stuff thrown out in this whole process. In fact, so much cleaning occurred that I could never have done it myself. AJay and Anna, Suzanne, Lis, and my parents all got in on the action (I am sure they didn' t know what they were getting themselves into when it started). We never did get to the closet project I still want to accomplish this summer and some bunk beds will be delivered in a week or two as well. Leah is very excited she will be here for this project.

Tomorrow is an Iowa City day. As I am sure you may be able to imagine it is not a visit we look forward to. They will do an AFP check again. So, even though we have been busy, this has been sitting in the back of our minds, and it is something we continue to pray about - to have very low AFP results. We ask that you, too, continue to keep Leah in your prayers - for her health to continue and for cancer to become a distant memory to us. Interestingly enough, Lance Armstrong will be in Iowa City/Coralville tomorrow for RAGBRAI and to raise awareness about cancer.

We continue to enjoy some very hot summer days here and are looking forward to August--especially August 15- Leah's 5th birthday! Thank you for all the thoughts and prayers being said for Leah each day, and for your continued concern about her and our family.

July 20. 2006

2006-07-20T19:16:00.000-05:00

The travelers are off to Montana. Leah fell asleep on the way to the airport, so this is the picture outside the airport in Waterloo where I let them off. Chloe was still fast asleep in the van, too, and even though I would have liked to have gone in and sat with them until they boarded, it was a good way for Leah to leave without having to think too much about missing anyone/anything. The only tears she shed were earlier before leaving because she would not have her Schwan man cinnamon roll for breakfast each morning. I hope both Chris and Leah have a wonderful time and cannot wait to hear about it. Pray for safe travel, happy memories, and continued good health.

July 17, 2006

2006-07-17T19:35:00.000-05:00

A week has passed since I last blogged and Leah has been keeping us busy. Our only true medical moment was a blood draw at Covenant last week. We are now done taking postassium. YAY! This was probably the most dreaded of Leah's medicines, although she really did not complain about it too much at all. So, we are still taking magnesium and fleet once a day and bactrim on Mon, Tues and Wed.

The highlights of the week have been VBS for Leah. She loved it! It was great for her to get to spend some time with kids, too, since that has not happened for her very much. We had a play date with Matthew and Annika Franzen last week as well. Matthew and Leah were special buddies from church before they moved two years ago, and even though Leah did not recognize him at church when she first saw him (probably because he is no longer "baby Matthew"), their friendship picked right up where it left off. Chris and I took both girls to see Cars (the movie) -our first family movie time. It was long and neither one of us loved it, but the girls were happy to munch on popcorn and drink pop. Friday we celebrated my mom's graduation from Viterbo's masters program with some pizza and an icecream cake. And yesterday my mom and I took the girls to Des Moines to stay with Aunt Suzanne overnight. We also shopped, visited the new library (probably not on most people's vacation itineraries) and the Science Center. It was just too hot for the zoo. After arriving home Leah wondered what else we could do tonight, so she and Chris are out for a run on the trail with the jogging stroller and then we will make a visit to DQ.

The big countdown for Montana has been happening here. Leah and Chris leave in just 3 days. Leah is getting more excited, and I am getting a little sad that I won't see her for five days. She has been my CONSTANT companion for seven months. However, this Chloe time will be nice, too, and she and Chris should have a great time.

In ten days we head back to Iowa City for a checkup. This will be when they take her AFP reading again. Of course I am worried about it and hope that everyone is praying for her continued health. She has had such great days and even seems a little squirrely that it is hard to think anything could be wrong, but obviously we need to keep right on top of this and keep praying that things are just fine.

Leah has had many things to say and each day I laugh at her vocabulary (or try to remind myself that she is almost a clone of me so I should watch what I am saying and how it sounds). She informed us last night that "it is important to drink a lot of liquids." She has been busy telling Chloe "Lady, you get right over here!" (this I am honestly not sure where she picked up). Her other favorite word is "deesgusting!" She gets up each day and makes a beeline for the computer to check her email. She usually can tell me who all my messages are from and if there are other junk items in my account. The downside of this is that there have been a few fights about who is in charge of the computer.

Please continue to check in on our website and pray for Leah as well -- we truly believe in the power of prayer and know that she is still in need of many for her continued healing on earth.

July 10, 2006

2006-07-10T08:45:00.000-05:00

First of all, I cannot believe the Fourth of July is over with already! Summer is flying by. I have been out of school for just a month now and still have way too much scrapbooking to get done with yet. Leah is having some wonderful days. Our doctor/hospital visits are fairly minimal now so we have returned to some form of normalcy here in terms of that. Last Thursday I took Leah for a blood draw at Covenant so they could check her electrolyte levels. She was pleased to find out it was only a finger poke, and we were even more pleased later when they halved her medications again. So, she has gone from 6 ml of potassium 2x per day to 3 ml in the morning. She still takes magnesium and fleet as well in the morning, and will have to take bactrim for a while yet on Mon, Tues, and Wed., but they have eliminated calcium altogether. Since they made another cut in her medications, we will be going for a blood draw again this week to make sure her levels are still OK. The big day for an AFP check is July 27, so we are praying for a normal reading and hope you will continue to pray for her as well.

In the past week we have been very busy! Leah has started to scrapbook with me. She has her own book, which means that Chloe also wants to scrapbook. They think it is great fun, but I am not very fast with my two helpers by my side. Leah has proudly showed her scrapbook to many people. On Wednesday last week we all went to Adventureland with my sister, Suzanne. The girls had never been there before and enjoyed it a lot. (If I can figure out how to put some pictures on here, I will add those later). The bumper cars were an especially big hit. We also visited Suzanne's new condo she bought, shopped at Archivers for scrapbooking supplies, ate at the Macaroni Grill, went to Barnes and Noble, and visited the Fickbohms (the girls just had to meet their baby-who just turned one- Abby) before coming home. Leah told me it was a fun day, but she was really tired. The night before we had watched fireworks with the Epleys and did not come home until after 11, so I was very tired and could certainly see why the girls were.

We have also had fun with Drea, who visited us and helped us use our Dora sprinkler. Leah had been inquiring about when she was going to go back to daycare again, so instead of Chloe going last week, I took Leah there for a few hours on Friday. I think she enjoyed that, too, and has always talked about daycare as though she were there just yesterday even though she had not been there since right after Thanksgiving.

This week we are going to try to get in for a massage, which is something Leah has been requesting for a while. We also need to work out several playdates, and she is wanting to visit my dad's friend, Lavern, who has told her he has a saddle for his little horse so that she can ride it. In the evenings this week she has VBS -that started last night- and she was ready for us to drop her off and be on our way.

Chris and Leah will be leaving for Missoula, MT in just ten days for a visit with Chris' brother. This will be her first plane ride and her first time away from home without me for any length of time. I know she is looking forward to it and has a whole agenda planned out.

Once again, we thank everyone for their prayers and thoughts for our family. We continue to ask that you pray for Leah's AFP to remain in the normal range (we like 3.5 or lower :)) and for her good health.

June 29, 2006

2006-06-29T22:50:00.000-05:00

Sorry for such a late posting. We had a LONG day in Iowa City. It all started when I finally really looked at the schedule of appointments this morning and noticed that Leah's first appointment in clinic with Dr. Rahdi at 11:30 -and her next one was not until 2:00. This did allow Leah to eat breakfast since with a CT there is a span of time beforehand you are not allowed to eat. However it did make lunchtime sad when we watched big tears roll down her cheeks because she was so hungry. The good news is that Leah's AFP is 3.5. Everyone seems to like that number. We don't have the CT results because it was so late when they finished. Leah had a very hard time coming out of sedation today. I held her, or attempted to, and so did Chris and then it was my turn again. She decided we should eat at Olive Garden on the way home and we were hoping that would perk her up. However, right after we ordered she started vomiting. Needless to say, we left the restaurant quickly. Luckily I had brought extra clothes for both Leah and myself "just in case", so we were able to change. We took our meals home with us to enjoy there. Leah slept the entire way back and promptly threw up again after we got in the door. She does appear to be feeling much better now and even ate her meal on the deck. Chris and I are exhausted--both physically and mentally. The plan for the future is another blood draw on Thursday at Covenant to check electrolyte levels. (Her daily medicines have been cut in half now). There will be monthly AFP checks in Iowa City. And, every three months there will be a scan. Obviously these monthly AFP checks are critical. We pray that they continue to remain within normal limits for forever and that Leah can once again be a normal four year old girl.

June 27, 2006

2006-06-27T21:18:00.000-05:00

We are enjoying another week of summer here at home. I admit we are becoming a bit lazy-definitely later bedtimes, which means getting up a lot later, too. Tonight we took the girls golfing. They enjoyed riding in the cart and want to go back. Leah even claims she wants clubs so she can play. This has been several more days of "normal" life. Leah seems to feel good, aside from needing an afternoon nap (with an 11 PM bedtime I would expect this, though, so it is hard to decide what is fatigue from chemotherapy and what is fatigue from staying up late). Leah has started some beading project that she seems to enjoy. Chloe likes helping, which means we have beads everywhere. I have read a few more books, all of which are total chick lit/trash/mindless fluff, but nowhere near the amount I used to read.

On Thursday we head back to Iowa City. I will admit that this is something that I am worried about. First of all, Leah will be having a CT scan and echocardiogram under general anesthesia. She is never pleasant to deal with when she comes out of anesthesia, so that is traumatic. I am sure there will be an AFP reading that is taken as well. It has been rather easy to ignore this visit coming up, yet it is always in the back of our minds. We are not used to getting good news in Iowa City (or that is what it feels like). So, once more, please pray for an even lower AFP than last time, and a CT scan that shows no abnormalities along with an echocardiogram that is normal as well.

We continue to be pleased with Leah's AFP from last time and have had many people ask if Leah is in remission or is cured. Iowa City does not seem to use words like remission anymore, and cure is never guaranteed. Leah will be needing prayers for a long, long time on her road to being cured. Our last AFP reading was encouraging, but we know that it could begin to rise and that would signal cancer once again being active in her body. So, any relief we thought that we might feel has not really happened for us. Others who have traveled this same road have made similar comments that even though you receive news that should be good and make you happy, there is no end in sight to the worry and looking over your shoulder that now exists. It is good for us that Leah is four and does not spend any time worrying about AFP readings or other aspects of he treatment that are not in her immediate future. We certainly take more time to enjoy every single moment with both girls and all the cute (and sometimes annoying :)) things they do.

Last night as we were getting ready for bed, Leah looks at me and says, "You know what song is running through my head?" Of course I did not. "Loveshack, baby," she responds. Apparently the CDs that some of her nurses made for her are sinking in.

I will post news of our visit on Thursday after we return home. Her clinic appointment is not until 11:30, and by the time we do the CT scan and the echo., I anticipate we will not leave until late afternoon. We will take any and every prayer we can get for some good news in Iowa City.

June 22, 2006

2006-06-22T10:08:00.000-05:00

We are enjoying our summer and not having to be in Iowa City nearly as often, but I will try to post since we are still having blood draws and AFP tests. And, we hope that you continue to remember Leah in your prayers. A normal AFP is wonderful, a miracle, but in order for her to be "cured" it will need to remain normal for at least five years. So, we certainly are on the right road, but not close to the end yet.

Monday was a blood draw day at Covenant. Leah's counts are coming up as expected. Her hemoglobin is lower 9.8, compared with 10.5 on last Thursday. This seems to be the case, though, for her with this combination of chemotherapy. Her hemoglobin drops later than the other counts and is still not very low by their standards. Her platelets that were at 32,000 on Thursday were at 85,000 on Monday, and her white count is back to normal. So, we hope we are done with GCSF shots forever. We still need to have her electrolytes checked weekly and her port flushed, too, but will do that next Thursday when we are in Iowa City.

Next Thursday is another big day. They will do a CT scan of her entire chest region- lungs, and abdomen to check liver regeneration and to make sure there are no spots on liver or lungs. So, please pray for everything to look normal. We will no doubt have another AFP test and then see where things go from here. UGH!

Leah is having a great time and appears to feel pretty good. She has been running around and has every moment jam packed with activity. Yesterday we went to Olive Garden, Barnes and Noble and to the movie Garfield: A Tale of Two Kitties. The movie was cute (despite horrible reviews it was just right for Leah) and Chloe even made it through her first movie. We also visited Grandma Kathy and Grandpa Daryl, made cinnamon rolls, did some computer work, had a stroller ride, a nap in the afternoon, and managed to stay up until 11 again. Today Leah has been cleaning (while Chloe undoes everything) because my co-op student from high school is visiting this afternoon. Leah is pumped up for this visit and has the day planned yet again. She even wants to take her bike to the bike trail to ride while I push Chloe in the stroller. She is starting to get a bit of fuzz growing in. Some spots look pretty dark to me, and others look blond, so it will be interesting to see what comes in. I know she wants blond hair, but we will take whatever we get and be happy with it.

I have been enjoying having some time off, too. I feel like I missed out on a lot of fun things with Chloe this past school year, and she is talking up a storm and has lots of silly ideas. I am finally finishing my knitting project I started last summer. Now it will be a sweater for Chloe, though, instead of Leah. I am also being pushed (by Leah of course) to get caught up with scrapbooking. So, someday I have to get that mess sorted out.

Again, we thank everyone for the prayers, emails, cards, and phone calls that keep coming. Please continue to keep Leah in your prayers as we face another Iowa City testing day next week and are hopeful for God's continued healing here on earth.

June 15, 2006

2006-06-15T20:47:00.000-05:00

AFP = 6.1
YAY!

We left for Iowa City early this morning-with a bag packed just in case. Considering Leah's counts are very low I did not want to get there and not be prepared. We stopped in North Liberty to do our whole emla cream routine and then were still 30 minutes early for our appointment, so we had a cinnamon roll at the Java Hut. Once at the clinic we had Leah's port accessed and blood drawn. AFP was the test we were worried about, but her electrolytes, hemoglobin, white count, and platelets along with liver and kidney function tests were run. Hemoglobin is still going strong at 10.5, platelets are low at 32,000 (they transfuse below 20,000-although before their platelet shortage they transfused below 50,000), and white count is very, very low. The good news that we were waiting for was the AFP. Last time it was 11.3. The normal range is 0-8.9, and because it is within normal, they are not planning on more chemotherapy. Before we left they decided to tack on a hearing test. Leah's last test was done in January, and the results today were the same as then. She does have some high frequency hearing loss. They explained again that she should be able to hear fine except in noisy situations-like an auditorium or lunch room, although it was explained that each year her school hearing test will probably always come back that she has failed. One of the drawbacks of chemotherapy is its ability to hurt good things as well as bad, so even though it helped kill cancer cells, it also hurt Leah's hearing, too. We will be going back to Iowa City on June 29th for an echocardiogram and CT scan. They would have done the echo. today but I was quite insistent it be done with the CT under general anesthesia. It was suggested they could use chlorylhydrate or versed.....apparently they don't remember the CT scan fiasco from December when they kept pumping her full of these sedatives and she became more and more agitated instead of more and more relaxed. I don't know that they expect to see anything in these tests, but it is another thing we can worry about and pray to come back with no surprises for us.

Finding computer time is getting to be hard work. Leah has the whole computer use thing down pat. She knows how to get on the internet and use all the bookmarked favorite sites. Since we have been gone all day I am taking up her valuable computer time (or so she thinks).

We are praying for her counts to rise quickly and for no infections! Leah is ready with a new Grump Day shirt to go to the Readlyn Days parade. Drea comes back from a short vacation tomorrow so that has already been lined up on her agenda of things to do.

Thank you to everyone for the continued prayers, cards, and phone calls we are receiving. Please keep praying for an AFP to stay in the normal range forever and ever, amen.

June 11, 2006

2006-06-11T20:32:00.000-05:00

Our family just got back from a wonderful picnic at the Schaefer's with the people that helped with Leah's benefit. Leah had a great time. Just a little over a week ago she was lamenting the fact that she was missing the Relay for Life --stating that she always misses everything for her (meaning her benefit and the Relay). I would say the picnic today was by far more fun for Leah than the other two events would have been for her. She jumped on the trampoline, played with Sparklers, some of Joshua's farm toys, and enjoyed the special attention. We can certainly tell that Leah's counts are going down. She has seemd a lot more tired in the past day or two. This is all part of the plan, but after we had to drive her to Iowa City last time when she had pseudomonas and was really sick, we plan on watching closely and taking her if there is even a hint of a fever. We have been taking showers a bit more faithfully, using antibacterial soap and scrubbing a bit more, too, since we don't want that infection again if we can help it.

Wednesday is an Iowa City clinic visit. This is all for an AFP check......please, please, please pray for a normal AFP. We are so, so close, but not there yet. They are checking it Wednesday to see what we need to do next. Right now the plan for Leah is up in the air. They have assured us that this is perfectly normal at this stage in the game. Everything is dependent on individual response to medicine. We still are praying that the chemotherapy drugs are working and knocking the AFP down into normal range. Leah has felt good, which has been fun--she is full of energy. We are usually up around 6, a brief afternoon nap, and then to bed after 10--sometimes 11. That is not much sleep for any four year old-even without chemotherapy.

Friday was my last official day of school. I will have to go back a bit to get things organized for the fall, but am happy to be done. I am also extremely grateful that Leah has felt well enough these past few weeks that I could work and finish up my year. I brought Leah with me for half a day on Friday-she enjoyed meeting people and helping me. She talked about doing that all week. She also got in a shopping trip with my mom to sit in the big chair at Simpsons Furniture (something Chloe got to do while Leah was in the hospital, and Leah mentioned several times the desire to do, too).

I promised Leah this would be a fast post since she is just sure she will never get on the computer tonight. Tonight at the picnic we are reminded again how the support of so many friends has helped us through these past six months. Thank you does not seem to adequately express how much that means to us, and we sincerely hope that someday we can repay the kindness that has been shown to us.

So, please keep praying.....we are longing to hear the word "remission" right now. We need a normal AFP ---that stays there forever!

June 6, 2006

2006-06-06T22:33:00.000-05:00

Hey, how about some pictures!

Leah, Chloe, and their cousin, Drea

Each year 1.3 million Americans are diagnosed with cancer, a figure expected to double over the next fifty years because of population increase and longer life expectancy. The odds are that most people will know someone who has been diagnosed with cancer (I read this somewhere). This leads me to say a special "THANK YOU" to all who organized and were involved with the Bremer County Relay for Life this past weekend. Though Leah was not able to attend, the survivor lap is waiting for her next year. Please pray for continued lower AFP counts for Leah and healing - both physically and spiritually to all cancer patients.

Chris

June 2, 2006

2006-06-02T15:13:00.000-05:00

I promised everyone I talked to yesterday that I would not delay posting the AFP results. Usually they have taken hours to get the results back (maybe because with numbers in the hundreds of thousands it takes a long time to calculate), but her number is so much lower, it was back in 30 minutes. Her new AFP is 11.3. Still not "normal", but getting much closer. We are only 2.4 away from normal. Now of course I can worry for the next two weeks about whether the chemo. drugs are working, if the AFP is stagnating, or going up, or just not doing what it needs to do. UGH! However, had it been normal today we would not be doing chemo. That would be good, except I am all for killing every shred of cancer in her body, and if another round of chemo. will help with that, I am all for it. She tolerates the chemo. very well, so even though we know it is killing good things in her body along with bad, we also know she is a tough cookie. We are hoping to start chemo. soon, otherwise we will be leaving Monday morning. If that happens I am pretty sure Leah will want to shop on our way home. She has already told me how boring this place is today since she is hooked up. Our laptop is having a little technical difficulty right now, so I am in the hall using the one we all have access to. Liz, Leah's Dance Marathon friend, is coloring with her. We also had a nap since we were up quite early and did not sleep well at all last night.

The floor is busy today- 22 of 24 beds are full, so we have a roommate. I doubt we get to be friends, because they only speak Spanish. Oh,well. The little girl is adorable. Child Life has already talked to me about the party they have planned for Leah when she finishes chemo. for the last time. However, since we don't know when that will be, we are holding off. It would be more depressing to have a party and then have to come back again.

We are so close....we can feel remission and "normal"life, but we are not there yet. I have said many prayers of thanksgiving myself for the continued effectiveness of chemotherapy, but in the next breath am asking God to please, please let this continue to work and let Leah's AFP continue to fall quickly-and remain normal for forever. We thank everyone for their continued support-phone calls, letters, cards, and most important your prayers that we still need very much.

June 1, 2006

2006-06-01T20:19:00.000-05:00

The past few days we have been enjoying some beautiful weather --taking stroller rides, playing outside, and getting to wear summer clothes. Leah seems to feel great. Her counts were good on Tuesday when we had her port reaccessed, so I am sure that helps. I have been at work on a more regular schedule lately, too. Since it is the end of the year I have a lot to do before I can think about vacation.

Tonight we are preparing to pack for yet another trip to Iowa City. I am dreading this trip but Leah seems OK with laying things out and picking DVDs, books, and other things to occupy herself. It is harder to want to stay there when she feels good and the weather is beautiful. This time she will be hooked up for the entire time we are there since the chemotherapy drugs drip in continuously over 48 hours. It is still debatable if we will be home late Sunday or Monday.

The dreaded AFP will be taken tomorrow morning. I have seen many people today and everyone has asked about that--so please, please pray for a NORMAL AFP reading. It has been dropping quickly, but needs to. This her tumor marker and we will not be done with chemotherapy until it is in the normal range.

Since both girls have now disappeared upstairs together I need to investigate what could be happening. Leah invited Chloe up there to help pick out some clothes and get things packed for Iowa City. What a tough cookie and trooper to happily pack her things without complaining for a trip to the hospital. We are constantly amazed by her courage and spirit during this chapter in her life and continue to pray for her to be healed here on earth.

May 29, 2006

2006-05-29T07:21:00.000-05:00

Happy Memorial Day! Leah was up at 6:10 AM (right after I gave her her medicine). She wanted to be sure to catch the Today show since we are down to Katie Couric's last few days. Too bad that Katie has the day off. So now Leah is working on an art project. We have also made some cinnamon rolls for breakfast. Chris has started running again and is on an early morning run right now.

Basically, we have had a week of being normal-aside from hooking Leah up for medicines 3 times a day and being on a pump for an hour a day. Still, it is so much better than being in the hospital. Leah has felt very good-she has been so busy. Chris took her jogging in the jogging stroller one day this past week, she has had school with Mrs. Larson, gone shopping, taken stroller rides, celebrated Chris' birthday on Wednesday, baked cookies, and done her usual organizing. We go back early Friday morning for more chemo. That will include an AFP test. I have been worrying, calculating, and praying that the numbers have gone down dramatically yet again. We really need for this drug to still be working and killing any live cancer cells in her body. I should be banned from looking on the internet because there are so many stories of children with AFPs that don't go down to where they should be. The whole idea is very scary. Please keep praying that her AFP is normal-or at least very, very close. As I said, she feels good right now-it is impossible to believe there is something as evil as cancer lurking in her body.

Our plans for today are none too exciting-going to the parade here in town, cleaning a bit, and maybe some baking. It is going to be sooooo hot outside today that even though I would love to be outdoors, I don't think we will last there for long. Tomorrow it is back to work for me-just half a day since Leah needs to go to Covenant to have her port reaccessed.

Please, please keep praying for the AFP level to be NORMAL! We continue to rely on the prayers of thousands for Leah's complete healing on earth.

May 23, 2006

2006-05-23T21:58:00.000-05:00

Back home in Denver....

Leah is feeling quite good and we walked/rode trike at the hospital this morning, and rode trike all over our floor. Leah's path included behind the nurses' station where they were working-she had plenty of energy to burn. Everyone knows she feels fine and her counts are good, but the test was whether the lesion she has is healing. Dr. O. saw her on rounds today and thought it looked much, much better. So, she gave the go-ahead for us to leave. We still had to wait for the home health agency to drop off our antibiotics. The one drawback is that Leah is home with her port accessed again. I hate this, but I guess we are more used to it and know how to do the meds. without worrying about it. And, it is better than staying at the hospital trying to entertain someone who feels great. The other drawback is that we were supposed to start chemo. this Friday. I am all for giving any cancer cell no time to grow or multiply in Leah's body. But, since she needs antibiotics which are not compatible with the chemotherapy drugs, we have to wait. The next round is now scheduled for June 2. Of course I am very nervous about this and what that AFP test will show. So, please keep praying for all cancer cells to die and a NORMAL AFP.

Chloe and my mom came to pick us up tonight. Chloe enjoys the hospital a lot and she and Leah took a short trike ride and then ate the supper that the Olive Garden brought for our floor tonight. Each week a meal is brought in from an area restaurant all as a part of someone's Boy Scout project. I am hoping our hospital time is nearing an end, but it is wonderful to see Leah acting like herself with the nurses, doctors, and others we see there. Tyler, a Dance Marathon-er, finally got Leah to talk to him. He really should feel good because she even went to activity with him on her own while I showered and met them later. My brother, AJay, his wife Anna and their baby Drea came to visit us-and bring us more supplies that we had requested before we heard we were going home. Leah took them on a walk and showed them many different parts of the hospital. We also had Leah's port needle changed today. She did an AWESOME job with this. She still does not like this and her skin is so sensitive to the tapes they put on that they itch and break out, but as far as getting poked, she is very brave and did not shed a tear today.

Leah's medicines are almost done infusing, so we have to finish her oral medicines, and head to bed. I already know that the morning cefapime dose at 6 AM will not be met with much excitement.

Please pray for a NORMAL AFP, for Leah's infection to clear up (and not return again) and for chemotherapy to be effective at killing all cancer cells in her body.

May 22, 2006

2006-05-22T10:03:00.000-05:00

I am sure everyone has been waiting with baited breath to hear our AFP results. Chris had to remind me last night when we talked that I had yet to post them. Leah's AFP was drawn on Saturday morning (5/20). I told DeeAnn our nurse to say a prayer over that little vial of blood before she sent it to lab. These results never come back very quickly and they continue to be something I can barely handle knowing and not knowing. When Becky our nurse was pulling them up on the computer in our room I was looking over her shoulder, but told her I would probably pass out or have a huge meltdown if the AFP was higher. Right now Leah's AFP is 45. On May 5 it was 464, so it has made a 90% decrease in 15 days. I think everyone was very happy with that. I am and so is Chris. It is still not 0-9, but we are getting closer. If we follow the half life of 5-7 days that we have been, her AFP was 464 on May 5, should have been 232 on May 10, 116 on May 15, and 58 on May 20, so we are slightly ahead of the half-life. We still need prayers to have the chemo. continue to work--we need the AFP to keep dropping just as it has been right back into the normal range.

Leah is feeling good -and has - for the last few days. She has pseudamonis, which is what we anticipated after her infection last time. I am not sure when we will get released. There will be a discussion about it today, but I need to make sure the lesion in her crotch region is looking better, and right now it looks slightly better, but (not to gross you out) still has a circle of pus in it. This is still causing her discomfort at times, and I can certainly see why when I examine her.

Leah got blood on Saturday because her hemoglobin was down to 8.0-- they transfuse below 8. It is now 10.7, and she has been a wild child wanting to go for walks, trike rides, and ready to run around. She is riding her trike up and down the hall now yelling for James. She has decided to call him "Jimmy" much to his annoyance, which is of course why she does it. I don't really even need to watch her since I can hear her yelling for him in her little munchkin voice.

Yesterday my sister visited and took Leah for a walk, got us Chinese food, and brought us a few other supplies. Chris was also able to visit very briefly. James was very glad to see him because he had dropped his cell phone in our car when he went shopping with Chris and this way he could get it back--it is amazing how hard it is to live without technology.

We are still waiting for the doctors to round. At this rate we will be here til tomorrow for sure. Please keep up all of your prayers.....for a NORMAL AFP and for Leah's infection to go away quickly and an uneventful third round of chemotherapy to start so that any remaining cancer cells can be killed quickly.

May 19, 2006

2006-05-19T10:05:00.000-05:00

We are back in Iowa City. Earlier this week we had several days of lots of activity and feeling good. On Tuesday morning Leah pushed Chloe to the post office and back in her stroller. That was quite a workout considering she has been very sedentary for the past few months. She has enjoyed some stroller rides, baking projects, and visiting Grandma and Grandpa Behnke at the farm.

On Monday when Leah had to have her blood work done we knew her counts were getting lower. At that point we started GCSF shots because her white counts were so low. Her platelets were also at 160,000 (a drop from 336,000 the time before, but still normal). Leah had a good day on Wednesday, but yesterday when I took her for blood work I could tell she felt pretty tired out and miserable. Her counts were lower-platelets were only 29,000 and her white count had dropped a bit more, too. Her hemoglobin had actually gone up to 9.4 (from 9.1 on Monday). Leah had wanted to go to Olive Garden for lunch and shopping for Chris' birthday, but as soon as we had her blood drawn she wanted to go home. So, we drove home with Leah falling asleep halfway there. As soon as we got home we went upstairs and napped for a while and then got up and Leah wanted to nap some more. Obviously this is very abnormal for Leah--in fact, recently she has been getting up before 7:00 in the morning (sometimes even before 6) and going to bed after 10 or 10:30 each night. So, we waited until Chris got home from work and then re-evaluated. Our Make A Wish meeting was set for 6 last night and by the time we knew we needed to go to Iowa City we knew that it was also too late to reschedule that appointment. Leah made a good attempt at sitting up and telling them her wish, "I want to pick up seashells by the ocean -and go to Bisney (Disney)", we filled out some paperwork and then quickly said goodybe to them. Leah had a bath before we left where I discovered that she has the same type of lesion (pseudomonis) as last month when her counts were so low. I immediately called Dr. Loew, the doctor on call, and told him we were coming. Chris came along, too, since Friday was his day off this week. Thank goodness he did. We had quite the interesting journey down since the county roads we usually take had detours. Instead of getting on the interstate by Raymond, we had to drive to Dunkerton, only to have a detour there. We had to take gravel for a while and then were finally able to get on the interstate by Jesup. All the while Leah is miserable and we are wishing we could get to Iowa City a lot faster. Chris dropped us off at the door of the hospital and met us up on 7th floor. Luckily we quickly got our room, were checked over and then accessed. They ordered the same two antibiotics as the last time she had this. Her temperature when we got here was up to 103.4, and her blood pressure was only 90/40. They monitored her very closely for several hours, and after a dose of antibiotic Leah's fever broke and her blood pressure went up a bit. Today she feels a lot better, but she still has the lesion on her bottom that we are watching closely. No one knows if her counts are bottomed out or not and if they have not and are still going lower she will not have anything to fight this infection. Her platelets had dropped more just from yesterday morning until lsat night when we got here- they were 21,000 last night and again this morning when they rechecked them. That is extremely low, but they will not transfuse unless they are below 20,000 because of the platelet shortage.

The room we are in right now is rather interesting. I noticed it instantly when we arrived last night. I call it the rain forest room, but it sounds as though a shower or toilet is running constantly and that there is water cascading down the walls. Leah has fixated on this aspect of our room and finds it quite annoying. I will admit it is hard to ignore. Especially since it is loud enough to keep us awake. I certainly cannot say any of us feels well rested after having blood pressure checks every 15 minutes for a while, then every hour, temperature checks, change of medicines, and a very loud noise added to that.

So, it looks like we are here for a while. Even though we think we know what the problem is, we still need to make sure medicines are working, that her counts come back up, and that she is fever-free for 72 hours. Dr. Vibahkar and Dr. Ellen rounded today and did not have much to tell us beside their looking her over and discussing our need to watch her infection closely to make sure it is getting better and not worse.

While we are not excited to be here, we know many people on the floor right now. Anuba is Leah's resident and both she and Dr. Ellen exclaimed about how glad they were to see us. James is working today, Tom stopped by on his break from a class he is taking today and told us he would be working on Monday, and we have had a few visitors-even though we are in isolation and everyone is supposed to gown up when they enter our room.

I am also sure that we will have an AFP check on our visit. This is something I hesitate to ask about. While we need to know the counts, if they go up we know there is active cancer growing somewhere in Leah's body. Many people have highlighted that these numbers are going down....they are, but we have also seen from her chemo. prior to resection that they can just as easily go up. So, please, please pray for a much lower AFP number (remember, we would like to see a normal AFP sometime SOON). Our prayer requests are many, because in addition to a low AFP, we also need Leah's counts to go up and her health to return so we can have another round of chemo.

May 14, 2006

2006-05-14T21:14:00.000-05:00

Happy Mother's Day! Today we were up at the crack of dawn (it felt like it anyway) because Drea was being baptized. Church starts at 8, so to get the girls ready to go we had to be up a lot earlier than we normally are. Leah has radar hearing right now, so the moment I am up, she is, too. She has been talking about baptism for days now and was quite excited about it. Chloe had to be dragged out of bed a bit later. Baptism went well and the girls both enjoyed going up front to "help" with the actual baptism at church. They also enjoyed donuts afterward. We did come back and take a nap in the morning since lunch at Anna and AJay's was not until 1:00. There was no way that either of them could live without a nap. Leah also surprised me with two wonderful Mother's Day gifts: a book she had worked on with her teacher Mrs. Larson about me--the things she loves about me (that she can hold my hair), and a picture of me, what we do for fun....she was quite proud of it. Leah also had shopped with Chris for a gift for me--a ring with her birthstone and name on it that will allow for a ring from Chloe to be given to me in a few years, too. Our other highlight of the day was a trip to Dairy Queen and a leisurely drive around the country where we spotted some deer.

Tomorrow we go for a blood draw (port access). Chris is off tomorrow, so he will go, too. As of now we really don't think she will need blood. On Thursday her counts were good-platelets were 336,000, hemoglobin was 9.3, and her white count was fine. By Thursday this could be a different story. I remember how quickly her counts dropped last time---even after we thought they were as low as they were going to go. While I did not expect her counts to be low on Thursday, I was almost upset they were not lower. Her AFP really did go down a lot last time her counts were down. There is no happy medium-I worry if her counts are too low, and now if they are too high.

I have not blogged for a while, but life here has been almost "normal" for a few days. Today Leah decided that Chloe annoyed her twenty times today and was listing them off one by one. Then she added, "I've had it with her today. I'm ready to sell her on ebay." They actually get along fairly well much of the time, but today there seemed to be many moments they clashed about a variety of things.

The highlight of last night was a trip to the OP for supper. The girls had fun and we decided to stop at our friends, Heather and Matt's, on our way home. Right now we are driving our car since our van just got repaired (back from November when we were hit on the way to Iowa City for Leah's biopsy), and the car seats have not been changed back yet. Just as Chris and I got out of the car-me about 2 seconds behind him- he yells at me to not shut the door---just a moment too late. Turns out Chris had just tossed the keys back into the car as he locked the door-and both girls were in their carseat. We tried to coach Leah on how to get herself out, but with no luck. Chris and Matt started off toward Denver to get our second set of keys, and came back after just a minute or two. Chris has locked himself out before and remembered there was an extra set of keys underneath the car somewhere. The girls were not panicked at all, but I was happy that we did not have to wait for a trip to Denver and back to get them out.

Please, please pray for a very low---close to NORMAL- AFP number. (We would love a normal AFP, but that might be a bit much at this point). Please continue to pray for Leah's complete healing here on earth-normal AFP with no additional detours along the way. We still continue to be thankful for the emails, blog posts, cards, phone calls, meals, and gifts we continue to receive. All the support we receive does help us carry on and remain hopeful.