September 29, 2006

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

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

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

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

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.