Monday, February 27, 2006

Monday, February 27, 2006

Greetings from the funny farm. We have had a good day with lots of laughter. Leah continues to amaze us with her witty comments. So here we go! Leah brought to our attention that she had found one of Chloe's old "binkeys" in her room. She proceeded to tell us how she found it and then commented that, "It sent me into hysterics!" I didn't realize that finding on old pacifier is so thrilling. As we were getting ready for bed, I thought I would lighten the mood a bit and do the chicken dance for Leah - minus the music. She didn't break a smile and looked seriously at me and said, "Dad, you look like you are going to wet your pants!" I guess I win the dork award for the day.

Tonight we visited G.G. (Great Grandma Norma) at the Denver Sunset Home. She is happy to be back from a several day "vacation" to the Waverly Health Center with a respiratory illness. We did not stay long because of all the nasty stuff that has been going around, but I'm sure she appreciated the short visit. The girls both cashed in with a few Hershey's Kisses as a treat. Ironically, Leah no longer eats Reese's Peanut Butter Cups. I think she has realized she met her quota for the year during the month of January. After our trip, Grandma Kathy and Grandpa Daryl visited. This was exciting because the girls had not seen Grandma Kathy for several days because she was under the weather as well. Leah was able to give her the gift she had picked out for her 60th B-Day that was last week. Once again, I would like to wish her a HAPPY 60th BIRTHDAY. It's been hard for me, but I have actually let her off pretty easy, after years of asking her if this was the year she turned 60.

For those of you who get the Waterloo Courier, please read the article titled "Grandson getting hit by car hits Grandpa hard" by Leonard Pitts. It is found in today's opinion page. Tina pointed it out to me. One of the last paragraphs states, "I keep thinking how all the uncertainty of life can be summed up in the ringing of the telephone. But it comes with the territory, doesn't it? Uncertainty, I mean. You just never know. Life is a dance on the highwire above mortality. It unfolds in the shadow of tragedies past and tragedies yet to come. There's nothing you can do about it except use the time in between to laugh, sing, hug, read comic books with your grandkids as often as you can." Though the article was geared towards his relationship with his grandkids, if you take this paragraph and make an addition of your spouse, siblings, parents, friends, co-workers, etc, it would be a pretty good incantation to live by.



Sunday, February 26, 2006

Sunday, February 26, 2006

Leah and Tina were able to come home from Iowa City last night with the help of Aunt Suzanne. Tina and I traded places Fri. night. Her last fever was Thursday night, so she was discharged a bit early. Leah helped herself out by running up and down the hallway on Sat. morning in front of Dr. Loew. After witnessing her spunk, he looked at a resident doc and said, "Why is she here?" They then proceded to write up the discharge orders for 8:00 pm, if she remained free of a fever. The only thing missing was a car seat for the ride home in Aunt Suzanne's new car. She went shopping for a booster seat before arriving in Iowa City and all was well.

Once again, we were blessed with the finest of care for Leah over the past three days. There were not any major hitches (the G-CSF shots were not fun though). Leah even smiled at and joked around with her nurse, Roshaun, for awhile on Thursday night. And of course, James Brown, was able to interact with her at times too. It is nice to see her real personality at the hospital. It makes it much easier on us and her providers. Although she is still a bit skeptical of Dr. Rahdi and some of the residents. Poor Dr. Rahdi, Leah is still playing "hard to get" with him partly because of our pressure and joking with her about being his friend.

Speaking of Dr. Rahdi, he did speak with me Friday about Leah's sitution. He mentioned that the surgical department was impressed with the progress that has been made with regard to the tumor shrinkage. Surgery would be a possibility at this time, but everyone (oncologists & surgical) agreed that a 5th round of chemo would be beneficial. Therefore, our schedule is to have a five day chemo regiment starting Friday and then when it has run its course we will be in surgery. Most likely, this will take place the last week of March. Dr. Rahdi said it will be a delicate and "heroic" surgery that is being estimated to take nine hours. Though it may sound gloomy, we are pleased to get to this stage. Our prayers were answered! We needed tumor shrinkage and received it after some doubtful weeks. Now we can move on and pray for Leah to remain strong and the surgeon's abilities to perform a miraculous, successful surgery.

I was able to follow the Iowa State Wrestling Tournament via the internet and a few cell phone calls to Steve Walker. I did even talk a bit of wrestling with Roshaun becuase she is from Belle Plaine and her cousin is Wartburg Nat. Champ, Dustin Hinschberger. Anyway, congratulations to W-SR and the Denver participants for their fine performances. I fully expect to be able to report a D-III National Championship for the Knights next week.

I must stop now. It is family nap time. We were all up late last night celebrating Leah's arrival home after a her short stay. Please continue to pray for Leah and all families afflicted with children's cancer. PRAYER IS VERY POWERFUL! More than I ever imagined.



Thursday, February 23, 2006

February 23, 2006

First of all, thank you for the many prayers for Leah. We have received numerous emails from people letting us know that Leah has been in their prayers for good CT scan results.

Our day began at 4 AM when we arose to pack and get ready for our Iowa City trip. We wer eon the road by 4:45 AM and in Iowa City a little before 7. Leah had to have her port accessed on 7th floor. Unfortunately the first attempt did not work, so Leah had to be re-poked. This did not go over very well. Port accessing is always traumatic, but Leah screamed that it hurt when they tried to flush it and I am sure she was not making it up this time. Kristi was downstairs on a different floor and came up to access her. This time it worked fine and had instant blood return. From there we went to CT scan where we were to have a 7:15 appointment with the radiologist and anesthetist. However, that did not happen until 8:30. That appointment lasted just minutes and we were on our way to CT. They now put Leah to sleep with a mask and then give her contrast via an NG tube. This is how she has had her last 3 scans. I always find it traumatic to hold her while they hold the mask over her face. I know she is scared of this procedure, but also know she cannot have a CT scan while conscious because that is far scarier to her. Chris and I waited outside the room for about 45 minutes before they were finished and then went to recovery with her. Unfortunately they discovered she had a fever in recovery, and this means an automatic admission to the hospital.

So off we went to 7th floor. This was definitely not what we had planned and I ran to Wal-Mart to get some things for Chris who is staying the night. Around 2:30 Dr. Rahdi came to see me while Chris was at the library and talked about how much weight Leah has gained, how her fever is not unusual after a CT scan, and then casually says that Leah's scan looks better and goes on to another topic. Here I have been focused on that for days and it barely gets a mention. So, I had him back up and we went over this in greater detail. Her scan shows another 25% shrinkage. On January 23 her tumor measured 8.4x7.7x8.4 cm. Now it measures 7.7x7.1x6.6 cm. They will be meeting with the surgeons to get their feelings on resection. It is less involved in the blood vessels and that, too, is a good sign. However, Dr. Rahdi said we could do Round 5 and that is not a bad thing, either. Obviously we want the tumor to be as small as possible so resection is successful, and if another round of chemo. will shrink it more then we may do that. Dr. Rahdi also asked if I had been following the AFP numbers. I found this an odd question because after it continued to go up for 3 weeks in a row it was never shared with us again. Strangely enough the AFP went down before the last round of chemo. was started. That indicates that they may never changed chemos. had they known it was going down (obviously after 3 weeks of rising, though, it could not be ignored). They have no reason to give for its rise and fall, except that they normally do not check it so often, and perhaps this is the normal course.

We still have a long, long road ahead. However, we are thankful for the good news we received today and believe that God is listening to the thousands of prayers said each day for Leah.
We are hopeful she will be sent home within a day or two, yet a hospital stay after good news is much easier to take than in some other instances.

Chloe must get to bed because I am working tomorrow before heading back to Iowa City. She has been a patient lap-sitter while I type, but I doubt it will last long. Please continue to keep Leah in your prayers.

Tuesday, February 21, 2006

February 21, 2006

Greetings tonight as I am somewhat recovered. I made fun of Chris and the moaning he did when he had his cold, that I don't dare complain too much, but I will say that I have felt better. Tomorrow I will go to school all day since the book fair is there to be set up.

Leah had another GCSF shot again tonight. Esther came over for moral support and Leah ended up reading books with her for a while. She is tired now, so we need to get her to bed, but she will complain about being tired and then run around for another 30 minutes. She just got done asking Chris "Chis...are you cooless?" The downside (one of many) of her being sick is that these totally inappropriate, disrespectful lines she comes up with are funny, and she does not really know they are disrespectful, and it is hard not to laugh. She has obviously heard me say the word "clueless" before and can turn around and use it in context. To give you an idea of her knowledge of her medicine she informed us on Sunday that Monday she would be taking bactrum for the next 3 days. Today Chris put 5 ml in the dropper for her and as she was bringing it to me in the living room to squirt in her mouth she looked at the medicine, turned right around and was yelling at him that she only gets 4 ml not 5 and that he needed to fix it. The scary part is, she is right about these things. Chloe has been renamed the Bandaid Bandit by Esther because she loves bandaids. We have been putting a stop to this because she ends up getting adhesive marks-bloody scabs- on her body where the bandaids were. However, I noticed today that she has one on her chest exactly like Leah. Apparently she is covering up her port, too. Leah just rolls her eyes.

I did not work until noon so Leah and Chloe and I had a dancing session this morning to 8675309-they both wore pink tinted sunglasses, and Leah looks the part of a stoned rocker with her hairdo right now. I took quite a few pictures.

Today is Grandma Kathy's birthday, and unfortunately, she, too, is suffering from a cold. So, we did not get to see her on her big day. Leah picked out a great 21st birthday card for her at Target yesterday she is waiting to give her. It was selected because there are pictures of olives and a martini glass (it is pretty) on the front.

Leah's personality continues to be just as usual-a big personality in a small body. There is constant chatter, information, ideas always being shared. Right now she is discussing how she always has to put her 3 kids to bed at night and Chloe just comes in and lays down on the couch and does not help at all and does not do any chores while she has to do all the work. Chloe gets called in to work at 2:30 in the morning .....could this sound like a strange version of reality? Did I mention that she may be my clone?

The scan is just a little over a day away. We are still praying for some positive news so that we are able to proceed with surgery. Please continue to pray with us for good scan results and a shrunken tumor.

Monday, February 20, 2006

February 20, 2006

Everybody brace themselves, you are reading a post by a new author. Tina's cold is so bad, she has asked me to post tonight. Though it is her project and therapy, I am not scared to step up to the plate. Though there is so much to say, I will keep it brief.

First, this gives me an opportunity to thank everyone for their support. You are all carrying us through this journey. We could not do this alone and will not be able to finish it off alone. It has been a tough journey thus far and will continue to be. As Dora says in every episode, "We need your help!" Your support, prayers, and positive attitudes will help Leah and our family get to where we need to be - healthy! We are truly blessed to be surrounded by so many wonderful people and will never forget.

Second, I do hope that this situation has raised an awareness that that the fight against childhood cancer is a worthy cause. 50,000 families in North America will be on this same journey with a child afflicted with some form of cancer in the next five years. Please support the Ronald McDonald House, American Cancer Society, Dance Marathon, Children's Miracle Network, St. Jude's, etc. I pray everyday that our future is one that holds a cure for all forms of childhood cancer.

One of my ongoing lines over the past few months has been, "Every family should have to spend a weekend on our pediatric oncology/hematology unit in Iowa City." It is a very eye opening experience and we see children that could move mountains by themselves. It also reitierates the fact that we have all been given many gifts and that most problems in our lives should be taken with a grain of salt. Everyday is a day to utilize our gifts to the utmost! God has laid many opportunities right before our eyes. Though some may not seem so good, through His and our positive spirits, we to can move mountains, just like the children on 7 JCE!

Relatively speaking, Leah had a great day. She remains very active and in good spirits. Her blood draw at Covenant went very well. She did not even shed a tear when her port was accessed. That fact alone, brought a tear to my eye. She was so tough and the staff at Covenant hit a home run by making her feel very comfortable. Her electrolytes are where they need to be. This is good news because it means her meds for her kidneys are right on track. Leah's white blood cells were low, so we did start her GCSF shots (which reduce the severity of low counts due to chemo, thus lowering the chance of infection). Nobody likes a shot, but Leah didn't dwell on it too much. Thursday will be a HUGE day! Not only are we expecting better scan results, we are also expecting her to have a blood transfusion due to a borderline Hemoglobin count today. Pray that all goes well!

Congratulations to the Wartburg Wrestling team for conquering their 14th consecutive Iowa Conference Tournament. I was able to watch it re-broadcast on T.V. It is very motivating to be a has been of a program that possesses such postive vibes, not only for their current athletes but the has beens as well. Good luck at DIII Nationals! I also need to put a plug in for the W-SR team and the two Denver-Tripoli grapplers who will be competing this week. Best of luck. Sorry to all you basketball fans, I just couldn't resist talking a little wrestling.



Sunday, February 19, 2006

February 19, 2006

Even though I have not blogged in several days, this one will be fast. Leah and Chloe are still not asleep and it is way past everyone's bedtime here.

We have enjoyed several days of "normal" life-or at least as close to normal as we will get. We all went to Grandma Kathy's and Grandpa Daryl's for a pizza supper the other night and got to see Aunt Anna and Uncle AJay, too. The girls both enjoyed that and Leah was able to bake cookies with Grandma. Yesterday I worked at the Janesville Library while Chris watched the girls. I felt fine all morning long, but when I got home I felt like I was getting a cold. I definitely have a cold, but I have chills and then will sweat it off, and then get chilled again. I am hoping no one else gets this at our house. So, the girls went to my parents yesterday afternoon and evening to let me rest. Leah is quite grown up about this. This morning when she came downstairs she mentioned that they could go to Grandma Kathy's again so I could rest and that way they would not bother me. I actually would have done this except my mom was sick today, too. When they got home last night I was in bed so Chris did their bedtime stuff. Leah changed Chloe's diaper and put her jammies on since Chloe requested "Lah do it."

Leah does still seem to feel well. We go for blood counts (port access) at Covenant tomorrow. Chris is off so he is going, too. Leah knows and is not looking forward to it at all. Thursday is the day of the scan. No matter how many times they tell me we won't notice a change visibly in her stomach size, I still look. We are just praying, praying, praying that it is small enough to resect. We hope that you all continue to pray for her each and every day and will especially remember her these next few days and pray for a shrunken tumor that has moved away from blood vessels.

As promised, this is short. Once we get her blood counts tomorrow, I will blog again. Considering how she is acting I would think they will be fine. Again, please pray for Leah.

Wednesday, February 15, 2006

February 15, 2006

Leah did well with both her fourth and fifth day of treatment and as planned we left Iowa City around 5:30 last night. She was quite ready to get out of there -and I was, too. Her fourth treatment (Monday) was started at 8 AM and yesterday's at 5 AM. These two seemed to make her a bit more tired, but after that many days of it I think that is expected.

On Monday night Lis stopped by again which helped break up our day. We also acquired a roommate who came out of ICU-and probably still needed to be there, and then had to move again to a new room-and got a new roommate there as well. Leah was tired Monday night, and fell asleep early. However, a little after midnight the nurse noticed her medicines were not flushing into her port, so we had to wake her up, take all the tape off of her port and then found the needle partially out of her port-it looked like it was just hanging out of her port. As you can imagine this was rather traumatic for her and there was a lot of crying. Luckily they were able to push the needle back in and retape her port, but by then I was rather traumatized after seeing her go through all of that. Once again her age is to her benefit. An adult would remember this experience, but just minutes after this was done she was giggling and asking for candy. On Tuesday Leah was able to decorate Valentines cookies, have music therapy with Kirsten, have a massage, and even give Clifford a hug and have her picture taken with him. I was surprised she enjoyed the Clifford visit as much as she did. Usually when she sees Chuck E. Cheese or Santa she wants nothing to do with them, but she thought Clifford was great and hugged and petted him. Chris was there to pick us up around 4:30 and we were ready to go shortly after that.

We arrived home around 7:30 last night and Chloe was waiting here with Grandma Karen to greet us. She was soooo excited to have us home. She and Leah were dancing around last night holding hands singing "I love you, I love you.." Every time they would stop Chloe would want to start up again. We enjoyed watching the Iowa game even though it did make bedtime late.

Leah has been running around and giggling and laughing like crazy today. She must feel pretty good to be as talkative and happy as she is. She is standing behind me now watching as I type and hugging me....she keeps talking about holding Chloe's "wee little hair" in bed. Usually she holds my hair to get to sleep. Chloe does not seem very interested in having her do this.

I worked this afternoon and Grandma Karen took care of the girls. Leah was not so sure about this at first. Her exact words were, "Well, Tina....I am not sure Karen can handle Chloe the whole time. She kind of bothers me when I take a nap." They did seem to manage fine, though.

We are back to our daily arsenal of medicines. Leah has not complained at all about it. Chris still has his cold and Leah told him he should take some magnesium and bactrum and calcium. She also received a few packages in the mail from different people and enjoyed launching a new doll into the air -and at us. We may need to pay a bit more attention when she has that toy in her hands. She and Chloe also spent part of the evening dancing. They have this special dance where they grab their pants and walk around they call the crotch dance. This seemed to be the dance of choice this evening.

Tomorrow we are supposed to go in for a blood draw to Covenant. This should be easy, depending on the weather. The CT scan is scheduled just 8 days from now. Please pray for a smaller tumor that has moved away from the involved blood vessels so resection is possible.

Sunday, February 12, 2006

February 12, 2006

Leah has now had 3 of her five doses of chemotherapy this round. So far, so good. She has not been sick and appears to be dealing with it very well. She continues to eat huge amounts of food and is hitting new records for her weight. She looks heavier in her face, but we are also starting to notice that her arms are looking a bit chubbier, too. Right now we will take each and every pound we can get, because there may be a time when she is not so hungry or willing to eat.

My mom stayed over with us until Saturday afternoon when my sister arrived. Suzanne was here in Iowa City in the afternoon and brought with her food from Applebees. It has taken me a while to get tired of hospital food, but I am quite tired of it now, so the Applebees lunch was wonderful. Leah needed more frozen pizza meals, so both Suzanne and my mom went to get some for her and a few other supplies as well. I do like having people here so that we can get things when we need them, and also have a vehicle to do this with. My mom left late in the afternoon to go back to Readlyn.

Suzanne, Leah and I did not do anything too exciting last night. We did move rooms so we are now in a double room by ourselves. On Friday we checked in to a double room that a fourteen year old girl, Caitlin, was also in. Caitlin is in the hospital and will be for a while. She and Leah actually interacted a bit, and that was rather nice. However, we are up in the night a lot to go to the bathroom and Caitlin definitely does not like it when machines beep and make noise, so when we were told that a room down the hall could be ours, we decided to take it. We also have a lot of junk here, so the extra room is nice, too. Suzanne and I did watch some figure skating last night and Leah and I read through a few huge stacks of books. I read them to her, she reads them out loud again, and then we read them some more.

Roshaun brought Leah two CDs of music to listen to and dance to. Lots of the songs are ones that I know and even though we had to do an abbreviated version of listening to them last night we will enjoy having them.

James worked today and Leah had quite a fun time torturing him this morning. Usually when Leah has her pole and her port is accessed she does not like walking around at all, but when it comes to picking on James, this was not going to stop her. Originally we were out in the hall when he was looking in the linen closet to get some bedding out, and Leah just "happened" to shut the door on him. I just happened to hold it closed with my foot, too. Leah thought this was hysterically funny especially since we could hear him talking to us from inside and knocking on the door for us to let him out. Later I tied some different cape-like things tied around his head, tied the stethoscope around his hands and then shoved him in the shower while Leah held the door shut. This, too brought hysterical laughter. It is a good thing James is a good sport. He does have the day off tomorrow and may need it to recuperate.

Suzanne ran some errands for us again-more Kids Cuisine pizza meals and a few other things. I have acquired a new pair of Gap jeans with flowers embroidered on them. Leah looked at them and said "Chris is going to say these are the worstest pants he ever saw." This is exactly what he said when I bought my camouflage pants, too, and Leah also shared that with the nurses. Lis stopped here today to take Leah's Valentines Day cards home with her and drop them off at our house. Chris has since taken them to Mrs. Larson's so they make it to preschool.

The library was on our agenda today and now I have convinced her to watch Desperate Housewives with me. She is tired out, but so am I. We have two more doses of this chemotherapy and hope to be home late on Tuesday night. We will not be discharged before 6 PM for sure that day and Chris will come down and get us.

We are praying for good scan results on the 23rd, for Leah to continue to feel well during and after her chemotherapy, and for her tumor to be shrinking-especially away from the involved blood vessels so resection is possible. Please continue to remember her in your prayers each and every day.

Saturday, February 11, 2006

February 11, 2006

Good morning in Iowa City. We arrived here yesterday at 8 AM and despite winter roads all the way to Raymond, the interstate was entirley clear and we had no problems whatsoever. We did our routine stop at McDonalds and had breakfast and then proceeded on to the hospital. When we come for chemotherapy we have an appointment in the clinic first, so we stopped there and met with Mary and Dr. Loew. Leah's port accessed easily and had blood return, too. This is good news, but it is still heartbreaking to watch the tears and see how scared she is when they have to do this to her. She is up 3 pounds again in weight. Right now this is visible in her face, and that is fine with us, since there may be a time when she does not have an appetite. This was definitely not the case yesterday. She had pancakes at McDonalds, and did not eat a lot, but by the time we were in the clinic my mom had to go out to the van to get her some Reeses peanut butter cups and then once we checked in to our room we had to get her a frozen meal ready to eat.

Leah is probably the most talkative she has been at the hospital. Dr. Loew tried to get her to sing his lip sync with him to Mary but she was not going to do that. Stephanie was Leah's nurse yesterday and Leah looks forward to seeing her. We played some of the music on our computer for Stephanie so she could teach us some new songs. I ran a few errands yesterday. We forgot to pack sippy cups -an essential item-so I ran to Wal-Mart to get a few for Leah. My mom stayed overnight with us, so she and Leah went to the library to get some books and videos while I was gone.

In order to get Leah ready for chemotherapy they need to hydrate her for hours before this begins. By 5 they were ready to start chemotherapy, which is different this time than the previous three. They are trying some new chemo. drugs in an effort to surprise her tumor since it has grown accustomed to the old drugs. This time there are two drugs being used over a five day period. On Day 1 (Friday) chemo started at 5 and went until 8. Today it will start at 2 and run until 5. Each day it will be moved up by 3 hours so that we should be able to go home by the fifth day (Tuesday) if she is feeling OK. So far, it seems things are going along well. Adults would undoubtedly dread each round of chemo and the side effects associated with it, but Leah does not think twice about this. She just knows she is hooked up to her port and they are giving her different medicines through that. Nausea and vomiting are listed as side effects, but so far we have not seen that. In fact, this morning Leah has eaten two pieces of cinnamon toast, 5 Reeses peanut butter cups, and a frozen pizza meal and it is not yet 9 AM. The only good news about being hooked up through her port is that three of her medicines that she takes each day can be given through IV fluids. Considering they are the three that Leah hates the most, that is good news.

The one bad thing about chemotherapy is that since she is hydrated, she is also going to the bathroom a lot! She is required to go to the bathroom every two hours all night long. This did not go over very well last night. There have been different times when she just gets up, goes and returns to bed. Last night there were a lot of tears which I will attribute to exhaustion. After one of her urine samples came back as having sugars in it, we were awakened at 2:30 AM to have her finger poked for a blood draw. That was not met with much enthusiasm, either. I hope someday these memories fade from her mind. Eventually her IV fluids were changed to make up for the sugar in her urine and by this morning her urine samples tested fine again. I will have to talk with her that she will be getting up again tonight every two hours to use the bathroom as well. Since chemotherapy starts earlier, she only needs to get up every two hours until 4 AM, and tomorrow until 1 AM since it is moved ahead by 3 hours each day.

I feel like we hardly slept last night but Leah was asking for breakfast by 7 this morning. She is now sitting reading her Berenstain Bear books in bed for us all. Everyone who stops by and hears her read comments on how smart she is and how cute it is when she reads.

James is here today and has been by to weigh her. Nancy, the resident we got to know back in December, is cross-covering this weekend, so she came in right away, too. Leah did smile yesterday when she found out Nancy would be here, but today she did not let on that she might like Nancy at all. However, she did not yell at Nancy and tell her to leave her alone, so Nancy was impressed with that. Nancy also commented on how much softer Leah's stomach feels. It does feel softer, yet I keep remembering Dr. Rahdi's comments on how this is Stage 4, so even if it feel softer, it is still not resectable and needs to shrink more to be able to take it out. There is such a long road ahead of us and so many different hurdles we still need to overcome. It is overwhelming to look too far ahead.

Today my sister, Suzanne, is coming to stay with us. She will leave tomorrow, so our time here has been broken up nicely. That leaves only Monday by ourselves-and sometimes that is nice, too, and then Tuesday when we hope to come home. Leah is not much interested, but I am planning on watching the Olympics. We told her that we were going to have an Olympic Opening Ceremony party last night when we watched them. The whole idea was obviously confusing to Leah since she asked where the party was midway through the opening ceremony. I only made it as far as Sweden in the Parade of Nations before I fell asleep.

Tonight Leah's nurse, Roshaun, is back and plans on bringing her a CD of music. Leah is looking forward to that, too.

Keep praying for her tumor to shrink so resection is possible. Dr. Rahdi has pointed out that this is the cornerstone of her treatment and quite necessary. Her scan is 12 days away and we pray for good scan results as well that show a much smaller tumor.

Thursday, February 09, 2006

February 9, 2006

I have now received a few emails about my lack of posting something. Every day my intent is to post a new blog, yet my two helpers (Leah and Chloe) are right on top of me thinking they should type, too.

We have had a few very nice, normal days. On Monday and Tuesday nights we had to give the GCSF shot to Leah. She does not like this, but we have a sort of routine where she gets out all her different kinds of bandaids, lines them up on the couch and then picks one for after we are done. I am still the shot-giver, and that is OK. I am getting used to it. Esther came over both nights to make sure we were doing fine with it, but I think we have it down. Chris was at the UNI game on Tuesday night, so I was especially thankful that she was around that night. Monday, Tuesday and Wednesday I worked in the afternoon. I think I could get used to a half time job, but don't think that is in the cards. Leah was very, very tired on Tuesday. I could tell she didn't feel good, but she was not sick, either. She just was not very hungry and was so tired. I gave her a Tylenol and she was fine, but I attribute this to her low counts. On Wednesday we had a busy day. She had to go in for another blood draw since they would like to start chemotherapy yet this week. On the way there I started thinking to myself that on Mondays she has a CBC and electrolytes tested. That is too much blood to do a finger poke now, so that is why we went to accessing her port, but since all they neeed was a CBC and we used to just get a finger poke, perhaps they would be able to do that again. That was my first question when we got called back, and they agreed. It is always a risk of infection when a port is accessed, so a finger poke was a fine idea to them. Leah was happy with this too-it felt like a reason to celebrate. By the time we came home my brother, AJay, was here to put DVD software on a laptop so Leah will be able to watch DVDs in the hospital. Leah ate a quick lunch, but then it ws time for preschool. Leah's half birthday is next week, so yesterday was her treat day at school and in addition to her standard cheese, sausage and crackers snack we packed little treat bags for the kids to take home. She helped with all of this. I called a few times from school to see if she had come home early and was surprised each time that she was still there. The one other time she has gone she was only there 30 minutes. I knew she was very tired that day, but wanted to go so badly. Yesterday she did go and lay down right away afterward but seemed to enjoy the whole day. We had laid a hat out to wear, but she does not really care about her hairdo and took it off as soon as she arrived. Last night when we were brushing teeth Chloe was touching her hair and Leah kept yelling at her, "Chloe I like my dred. Leave it alone." Then she informed me that she is always going to have a dred.

The past two nights when we have said our prayers I ask Chloe what she wants to pray for. Her answer is usually "owie. tummy." This has made Leah very upset. She usually yells at her, "Chloe my tummy is not owie. Stop stinkin' saying that." I smile to myself because think that is good that she is not feeling sick or worrying about something right now.

Leah has been busy reading up a storm, talking up a storm and has told us many times, "I find myself kite hoomorous." This is usually after she has done something very annoying. Chris and I both have bad colds and we are hoping Leah does not develop one. They called with her counts yesterday, and they are quite good. So, we are ready for Round 4 of chemotherapy starting tomorrow. We need to be in Iowa City by 8 on Friday morning. Unfortunately this is Chris' bad weekend at work -he is on call Friday night, second on call Saturday, on call Sunday night, and then second on call on Monday. So, not only does that mean that he won't be in Iowa City, but it also means that Chloe will be farmed out to grandparents a few times, too. They gladly watch her and she has a lot of attention showered on her, but she is not happy when I leave. Already this morning when I told her that tomorrow Daddy would take her to daycare because Leah had to go to the hospital, Chloe said, "me go." Leah thinks it would be fine to bring her along, but perhaps for a visit and not to stay.

Today Leah needs to finish her valentines since we will miss the party on Tuesday. We also need to pack and get a few things lined up for our stay. I asked Leah what she would like to do today for a Mommy/Leah day and she told me that we should lay in bed all day. I was hoping to take her to see a movie, but Curious George does not open until tomorrow, and there is nothing else for her to see at this point. We may get to Target since there are some things we need for our hospital stay.

We have had many people mention visiting us while we are in Iowa City. We do enjoy visitors, but know that Leah will be pretty knocked down by this chemo, and she does not always enjoy visitors. She does get frustrated by all the people stopping and will often tell people that she wants them to go home. So, please call if you want to come and we can decide if it is a good day for visitors.

Please, please continue to pray for Leah's chemotherapy to be effective and with minimal side effects. Pray for a shrinking tumor, lowering AFP counts, and the ability of the sureons to resect her tumor. I am praying as well that her scan on February 23 shows significant shrinkage again.

Monday, February 06, 2006

February 6, 2006

I am blogging earlier than usual. Leah is reading books on the couch--we are hearing all about how jealous Ginger Snap is of Blueberry Muffin right now. Chloe is busy playing house, although she has informed me she has a dirty diaper.

Yesterday we all slept late and it felt great. It seems like the girls get up early no matter what time we go to bed, but yesterday we slept til nine. I use the term "slept" loosely. They seem to get sleep-Leah at the head of her bed and Chloe sleeping at the foot of the bed, but I am supposed to fit in there somewhere, too, and there is not a lot of room. Chloe sat up and looked at us and happily announced, "Ahmornin'" which we translated to "good morning." Leah did not seem too motivated to do anything special yesterday, but it felt great to be home. We took an afternoon nap and Chloe spent a lot of the afternoon with my mom and dad. She seemed to like that, too. Just as Grandma Kathy was driving to Denver with Chloe Leah announed she needed to go to Grandma and Grandpa's. So, we humored her and Chloe and Grandma returned to her house and we were a few minutes behind. This is also on the agenda for later tonight.

Leah and I had our first experience at Covenant getting blood in the Outpatient Clinic. I do like this so much more than the finger poke lab. Here we had our own private room and two nurses who were extremely kind to Leah. She hated it, of course, and it makes me want to cry, too, to see her have to endure this, but of course we are doing these things because we want to save her life. The whole procedure itself was done in just minutes and they had blood return right away and no trouble accessing her port. That made it seem better. The two nurses we met today, Elaine and Georgene, will be the same two we see each time.

After the Covenant experience we went to Target to get some new nail polish and a DVD for Grandma to have at her house for Leah to watch when she wants to. We did not have a lot of time when we got home for us to hang out because I went to school this afternoon. It actually feels good to be there sometimes, and it makes me remember a little what it is like to be "normal." I am sure people are sick of hearing me talk about Leah, cancer, chemotherapy, etc. It is hard to be a normal person and talk about all the other things in life that everyone else gets to talk about. It is not that I am not interested, because sometimes it is a good diversion, it is just that my mind is on one thing, and one thing only.

Mary in Iowa City (Mary in the Middle) called with Leah's blood results just as I left for school. Overall her counts look good- including her electrolytes. Her hemoglobin is even 11.3 - good for Leah, and almost in the "normal" range. The bummer of the day is that she is neutropenic-the only count of hers that was not good- so we are starting the dreaded GCSF shots tonight. Leah knows about this and shed a few tears, but this is another thing we have to do. I think Chris and I would do fine with this, but I called our neighbor, Esther, who is a nurse practitioner and is going to come over and help us out. The hope is that her counts recover enough by Wednesday so she is done with the shots and we can start chemotherapy by Friday. Otherwise it will get pushed back until next Monday. Mary also told me her next CT scan is scheduled for February 23. This felt like an instant kick to the gut. I know we need to know how her tumor looks and if it is responding, but part of me enjoys happy oblivion, too. Obviously the sooner this round of chemo. could start the more time it will have to shrink the tumor before her scan. You can imagine what is on my prayer list----shrinking tumor, good scan results, and the ability to start chemotherapy this week.

Also a sidenote that I forgot to mention when writing about Dance Marathon-Leah's preschool teacher, Mrs. Larson, was down for Dance Marathon, too. She was able to be in the ballroom with the dancers and really, really wanted Leah to dance with her. Of course Leah in her typical fashion, stuck her little chin out and refused. Mrs. Larsons daughter, Katie, participated in Dance Marathon and raised a huge amount of money for this cause.

So, just so you can hear it one more time and there is no confusion-please pray for a shrinking tumor, good scan results, and the ability to start chemotherapy this week.

I have heard from our bracelet salesgirl, Sara, that she is still doing a good business and ordered 800 more bracelets, so there are still some available. We are looking forward to getting Leah and Sara together soon to meet.

Also, as you plan ahead, a benefit for Leah is being planned for April 8. While Chris and I do not know all the ins and outs there are several people on the committee, and they have great things planned.

Saturday, February 04, 2006

February 4, 2006

We are back from Dance Marathon and had a great time. We didn't get out of here until almost 3:30 yesterday and arrived there a little after 5. We quickly checked into our hotel and had a spaghetti supper they provided. There were over 400 family members there that had been affected by childhood cancer and that participated in the event. The whole event was incredible-over 1000 students who danced for 24 hours and had worked to raise money for this cause. The Iowa Memorial Union where the event is held is under construction, so there were a few constraints on how many people could be dancing in the ballroom that they have not had other years. Still, the whole experience was quite memorable. After supper last night and a meeting for families to get some directions about the opening where we all walked in together, we participated in the kickoff by walking down an aisle lined with the dancing participants and then up across the stage. It is quite overwhelming to have so many people cheering and yelling for you and your child (and the other families) who are going through this. The families' names are also called off as the procession walks in and across the stage.

At 9:00 families were permitted to dance so we took the girls upstairs for a little over half an hour. They enjoyed this part and the college kids were quite happy to dance with them. Chloe really ate it all up and Leah pretended she was not interested, but she likes the attention, too. Our family rep., Liz, had met us right away when we checked in and she and her sister were very interested in dancing with the girls and helping out. Luckily Leah and Chloe liked them both right away. We also ran into Tyler, a volunteer from Dance Marathon that helps lead activities for Leah. He is a wild and crazy guy and Leah always gets a kick out of him. During the weekend we were able to visit with the Koepkes whose daughter, Megan, is also undergoing treatment in Iowa City. Megan's mom is originally from Readlyn and her dad is from Waverly, so we know many of the same people.

Unfortunately we did not get back and really get to sleep until almost midnight. We are paying for this today, since we were up by 8 this morning. Today we danced a bit more, ate breakfast and lunch, listened to some different parents presentations (this is something we will do next year), and walked around with Aunt Suzanne and her friend Steph who visited. They,too, were impressed with Dance Marathon. The highlight of the day for Leah was probably the doctors lip sync they performed to "I Want it That Way." James, the nursing assistant, Dr. Loew, Dr. Goldman, and a few other doctors we are not as acquainted with performed this with choreography. We had a good laugh about their act.

After that we all decided we were ready to go and packed up. The girls napped the whole way back and we drove around for an additional half hour so they could sleep more. Chris and I got to watch the rest of the Hawks game and Leah managed to eat constantly after we returned home. We also visited GG and Grandma Kathy and Grandpa Daryl tonight. Leah and Chloe are so tired now-in fact, Chloe needs to sleep desparately, but Leah wants to write everyone a message yet in this blog. She is still feeling pretty good, and has giggled up a storm. Apparently she cracks herself up, and even though this is four year old humor we cannot help but laugh, too.

Please pray for her medicines to work, for her tumor to shrink, for her good spirits to continue, and for God to provide strength and comfort to us all in this journey.

Leah's message:

Friday, February 03, 2006

February 3, 2006

We have started packing for Dance Marathon and probably will not blog until we return tomorrow night. Leah is helping me pack-she has a lot of ideas of what should come along. We have already packed the toaster, butter, knife, cinnamon and sugar and bread. I am starting to get anxious to get out of here and be down in Iowa City for this big event.

Unfortunately the girls both got up at their normal times this morning. Bedtime did not happen until at least 11 last night, but there was no sleeping in for them. Major bummer. I could use a nap, and thought I would get to work out, but have had a few interruptions and not much motivation to get going. Leah had preschool this morning with her teacher. This was fine, except probably did not go as smoothly as anyone would have liked because Chloe had to help, too. Usually Chloe is gone when prechool is going on. Deb Smith stopped by to replenish Leah's supply of peanut butter cups. She has eaten several today, too, and her appetite is still going strong.

I spent a portion of my day on the phone with Covenant lining up Leah's blood draw there for each Monday. They are being quite accommodating about everything, so hopefully on Monday when they have to access her port things will go smoothly. I also spoke with Iowa City a few times, too, trying to iron out her medications that were prescribed. As of now, I think it is under control.

Leah is in a great mood today and has been talking a mile a minute and giggling up a storm, too. Aside from her tummy and her thin hair it is still hard to believe that she has something wrong with her. We just keep praying that the doctors are able to help her and that their collective wisdom and years of experience will help her and that God has given us this group of people who will help heal her.

We are looking forward to a weekend of good times in Iowa City. Please continue to keep us in your thoughts and prayers as we look for Leah's chemotherapy to work and shrink her tumor. It is amazing for us to know that there are thousands of people praying for Leah's recovery each and every day.

Thursday, February 02, 2006

February 2, 2006

We are home! It is late now and the girls should be in bed, but they are having a great time giggling and being goofy- Leah could barely speak before she was giggling so hard. It is so wonderful to see this side of her personality and not the hospital side (definitely not happy when she is there, and the giggles are rare).

This morning we had another problem getting blood return from Leah's port. My theory that when she has a tantrum they have troubles getting blood has bit the dust because every single time they tried today she was calm and cooperative and it still would not work. Finally they did use TPA and it worked well after that. The TPA helps dissolve any clots that may form and sit in her port and prevent blood from coming out. The heparin and saline flush in well, but the reverse pressure when trying to draw blood sucks the clot into the opening that blood is supposed to come out of and prohibits any blood from coming out. When they rounded this morning they had already decided that Leah's electrolytes looked to be more in line with where they should be, and were planning on discharging us this afternoon after tweaking the doses of oral supplements she gets. Her magnesium and potassium are still a bit low, but we are taking medicine after medicine to counteract these things. Dr. Loew shared with us that one of his patients continues to take these medicines a year and a half after treatments have stopped. His kidneys are recovering, but slowly. All I could think was that at least he was a year and a half out of treatment and I hope someday we are, too, and Leah may or not have to still take oral supplements to help her kidneys, but that will be the least of my worries.

I had to get up early this morning because I was interviewed on the radio station 96.5 to help raie money for their Dance Marathon/Children's Miracle Network weekend they are starting. They interviewed many cancer moms throughout the day to help raise money. Leah came with me, too, for this early - 7:40 AM interview. (7:40 AM used to seem rather late, but in the hospital we would rather have been sleeping). I laughed this morning because we were all so tired from the yelling boy across the hall the other night that we slept pretty hard last night. Leah got up and announced that she had drooled all over "just like Grandma Karen does when she sleeps!" This has become a joke with us and Grandma Karen since she fell asleep once during one of Leah's blood transfusions. For the record, we did not see Grandma Karen drooling, but we will never tell her that.

Leah's breakfast was 2 pieces of cinnamon toast (we bring our own supplies to make this), a bowl of Life cereal, 2 Reeses Peanut Butter cups, some cheetos and 2 cups of milk. As soon as she was done with that she asked if she could have lunch. The megase is really working and the further otu she gets from her last chemo. treatment the more she can pack away. I think today she has had 11-12 Reeses Peanut Butter cups----that is only 600 calories from that alone! The big thrill she was looking forward to was going to eat lunch at Melrose -one of the cafeterias in the hospital. They have a good selection and the one Leah has opted for both times is spaghetti with marinara sauce. She also ate some grapes and managed a frozen meal tonight and macaroni and cheese-and the extra Reeses Peanut Butter cups. I think she may be gaining weight-right now it even looks like it in her face. This is not bad, though, because after chemo. she does not feel like eating much at all.

Dr. Rahdi also stopped by this morning. He wanted to talk with us about the conversation he and the other doctors had about Leah yesterday. They will be changing chemo. drugs for round 4. This is what we expected. They are going to a different drug than the one originally mentioned, and this one drips in over 5 days. We will be inpatients that entire time. After the fourth round there will be a scan to see if there is enough shrinkage for resection, or if they would like to do a fifth round of chemotherapy. Again, this is another "wait and see" (and for us pray is the third component) time.

Leah did take part in the morning activity-sponge painting. Any art activity she loves to take part in and this was right up her alley. We were discharged by the afternoon activity time, but were waiting around for her medicine to get ready at the pharmacy and they wanted her to take part, but we could not convince her. After noon when they took her port needle out Leah had a great time running around our floor, picking on James, and pretty much taking charge of things. It is amazing how her personality changes almost instantly.

We are still looking forward to Dance Marathon this weekend. While I would rather have never had this latest hospital stay, it has been exciting to be in Iowa City to see all the college kids prepare for this event and witness their enthusiasm. Leah has been asked to dance by many people already. She may be up late into the night to get all these dances in. We have heard from everyone that Leah will feel very, very special this weekend. Chris and I are looking forward to meeting up with some new friends we have made and also meeting some people with wonderful success stories to share.

Leah is clamoring for the computer-she claims she needs to email a few people yet tonight. It is way past bedtime, but we are having a great time. Leah must have been on a sugar high with all of the chocolate she has consumed. She has not said too many things about all of her medicines--she now takes 7 different medicines 2x each day, and rarely complains. She wants to know what each medicine is called and is developing a preferred order to take them in.

Chris just returned from work and Leah wants to type yet....we want to thank everyone again who has been praying for Leah and helping us in so many different ways. The meals that continue to arrive and the cards that we get each day in the mail help relieve some of our workload and continue to lift our spirits. We also continue to enjoy the phone calls and emails we receive. Leah's Dance Marathon poster was completed and dropped off by Deb Smith and looks wonderful--another thing that we did not have to concern ourselves with and are so happy to have to take with us.

My words of wisdom from Leah tonight (remember she is four and finds bathroom humor right up her alley) as she continues to pass gas with all her new medicines...we have often joked that she is tooting or "thundering." She responds with, "Tina, thunder brings rain. Toots bring poop."

Wednesday, February 01, 2006

February 1, 2006

We have spent an uneventful day in Iowa City. Last night we did not get to bed very early at all. The teenage boy across the hallway who has a head injury spent a long time screaming obscenities at his parents and nurses, and his parents responded by yelling obscenities back at him. It was quite educational and luckily Leah fell asleep while this was going on.

Leah was awakened at 4 AM for more labs to be drawn. Unfortunately she spent the entire time this was going on screaming and crying. Her nurse could not get any blood return again and she had to call the resident, Dina, abou this. Dina thought they should put an IV in to draw blood but both her nurse and I quickly vetoed this. This is one of my pet peeves about the residents. They do need to learn somewhere, but I would prefer it not be on my child. We really bonded with the December residents, but the January ones we have not bonded with, and it seems at times that the first year residents have had classwork, but not opportunity to apply what they have learned in class. They also do not know each child and seem anxious to use the things they have learned and do not often consider the fact that they need to try and minimize the trauma for the child as well as try to be the least invasive as they can. When Erin, the nurse, came to try to draw blood an hour later and Leah was sleeping it drew fine. This makes me wonder if when Leah screams and cries she is closing off a vein or something that makes drawing blood difficult.

Leah's electrolytes seem to be more in line with what they need to be. They have taken her off her IV pole and fluids and removed the electrodes. She received her supplements orally tonight-all 8 different medications. She did not complain about this very much-I think we heard the word "icky" only once. They will draw labs again tomorrow morning and if things look good, we may go home. I hate to plan on anything because it all seems to change minute to minute.

The AFP reading is up again-over 300,000. I did not even want to know the numbers because it is hard to hear when things appear to not be working. Tom, our nurse, pointed out that at least her tumor has a marker. Many other patients have to just try multiple rounds of chemo. without any indication that things are working. With this tumor, we have known quickly when things are not working and the doctors can change course for the next round. We are still waiting for Leah's counts to bottom out and then recover so we can start her next round of chemotherapy.

Dance Marathon is approaching on Friday. I definitely hope we are out of here so that we can attend. We have heard so many positive things about this experience - I can hardly wait for Leah to get to feel so special. Chloe will also enjoy herself even though she may be hard to corral and entertain. Tonight she is with Grandma Karen since Chris is on call. Leah got a kick out of my conversation with Chris earlier when I told her all the crazy things Chloe was doing at home. She loves all the silly stuff Chloe does and just rolls her eyes.

My mom is still here, so after lunch today I went to Wal-Mart and the mall. Leah raked in a few nice treats-her first pair of flip flops, a new outfit from The Children's Place, and a hat that says I Love Mommy (that she does not want to wear! :( She also got a cool Dora book that has a little record player and records that come with it-it plays 24 songs.

Leah attended both afternoon and evening activies today-it has been nice to not drag the pole around with us. Tomorrow is Groundhog's Day so we made Groundhog's Day cards tonight. She is very tired tonight since she had no nap and was up until 11:30 last night. We did visit the library again, and James stopped to see her even though he was on third floor today. Mrs. Larson's (Leah's preschool teacher) daughter Katie stopped by to meet us today since we will get to see her at Dance Marathon. Katie has been raising money for Dance Marathon and has done a great job!

We pray that Leah's electrolytes can return and stay within normal limits, that the doctors find a new treatment that will work for her, and that her tumor is not growing back despite rising counts.