Saturday, April 29, 2006

April 29, 2006

Just a quick update for everyone: we did not leave the hospital until close to 6:00 on Thursday evening. I got a lesson from the home health nurse about how to administer Leah's medications. That means that I am the home health nurse essentially. I now administer her cefapime three times a day and her one other antibiotic one time each day. It really is not hard, and Leah even has the hang of it enough that I hook the medicine into her tube and she pushes it in. She is rather proud of being able to do it and it probably feels good to have a bit of control over a few things in her life. Still, I feel like we are focusing on medicines and things more and more - especially our first night home when we had to do medicines from the hospital, our home medicines, and her last GCSF shot.

Friday was a rainy day here. Leah had school with her teacher Mrs Larson for an hour and then a good, long nap. Last night we all went over to my brother and sister-in-law's to see the new baby. Leah got to hold her first and grinned the entire time. We have quite a few pictures of this. And Chloe also held her a bit and enjoyed that, too. In fact, Drea was such a hit, that she had to make a visit to our house today and the girls both held her some more and Leah fed her a bottle. We slept very, very late today (9:30 AM) which is unheard of for us, but it felt great. I almost thought we would not need a nap, but no such luck. And, even though I wondered how Leah could be tired, I fell asleep, too. Leah still has a big line-up of activities tonight: making cookies at Grandma Kathy's, a trip to Dairy Queen, and a visit to Heather and Matt's. We tried to explain that it is already 7 PM so perhaps we could not do it all, but she is not one to want to miss out on a single thing, so Chris is running them to my parents for 45 minutes while I blog and then go to the store.

Leah's new food is cinnamon rolls. We had a wonderful meal brought to us last night by the Epleys and dessert was a pan of cinnamon rolls. Just Thursday morning Leah had tried her first one and was enjoying it, so this treat had perfect timing. Unfortunately Leah laid claim to the entire pan. She is also enjoying Pizza Peddler pizza quite a bit, too. We are just glad she is eating.

Since we do have a long list of activities yet this evening I need to run to the store. Our next chemo. treatment is on Friday. As always, we ask that you pray, pray, pray for lower AFP numbers and for her chemotherapy to kill all the cancer cells in her body quickly.

Thursday, April 27, 2006

April 27, 2006

Leah had quite a lot to say yesterday! In case you can't tell from her blog, she is feeling pretty good. Today when they got her count results her hemoglobin is around 11 (up from 6.9 on Monday), her white count is 12.2 (up from 4 yesterday). Her platelets have fallen again, so we may be looking into another transfusion of those. UGH! We are still in isolation because of the sores on her bottom. She has had no fevers for three days and would love to be out and running around, so I am going to talk to the doctors a bit about this. I know we don't want anyone else to get this, either, but considering they are in an area of her body that is always covered, maybe they will give us a break. We still have 9 more days of IV antibiotics to go, though. Right now we are waiting to hear if we have to go home with her port accessed and administer her medicine that way or if they can find an oral substitute. Leah woke up in the middle of the night crying last night and was upset about the idea of having to have her needle in at home. I know the doctors and nurses think it is no big deal and lots of kids do it, but home is one place she has been able to feel and be normal so far. I don't want to stay here for 9 more days, either, so I guess I will talk to Dr. DePaola about all of this and see what he has to say.

Last night I was able to escape our room for almost an hour and went and visited with another mother on the 3rd floor (the child bone marrow unit). It was nice to be out of the room and have some adult companionship, even though the nurses are great to visit with, too. Rebecca, the nurse assistant, stayed with Leah the whole time and read books and talked with her. She found the whole thing quite humorous since Leah talked her ear off. Few of the people here ever get to see that side of her. She rarely speaks if I am around unless it is someone she is really comfortable with-and that eliminates many of the doctors and nurses here. Well, last night she went on and on and used a whole bunch of big words-Rebecca said she is like a miniature adult. Between the eye rolling she uses, the "Well, Tina, like...." she begins her phrases with and the fact that she remembers everything including the exact inflections I have used when talking she is a little bit like me. She even has the internet shopping thing down and is busy reading books out loud now on the bed.

Leah's appetite has improved since a few days ago. I even had to share my cinnamon roll with her for breakfast (I went down to the Java Hut on first floor to get this), since according to Leah "I'm not into the menu food anymore!" I am just glad she wants to eat again.

11:30 UPDATE
Dr. DePaola just visited us. We are coming home! YAY! The bad news is that Leah has to be accessed while at home since she has two antibiotics she is using for her infection. But, why stay here for 7 more days while this is going on? Her infection does look better today so something is working. Her next chemotherapy round is scheduled for next Friday. Dr. Rahdi left for 10 day so I am not sure what they are thinking in terms of chemo., but Mary in the Middle is around, so I will visit with her, too. A home health nurse will have to come to administer her antibiotics, so right now that is being arranged and then depending on what time we get out of here, Leah may get her one antibiotic before we leave and we may even go to the mall. She is all over that idea.

Please, please pray for Leah's AFP to decrease and return to normal. This next round of chemo will be very, very important for her as we hope her AFP has not developed resistance to doxirubicin.

Wednesday, April 26, 2006

Leah has more to say

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Tuesday, April 25, 2006

April 25, 2006

Today has gone rather quickly for us. We are in isolation once again. This could make us a bit crazy, but we have had some visitors and that has helped. The lab results have finally indicated what Leah's diaper rash is - psuedomonas- a bacterial infection that affects people with compromised immune systems. So, we are starting on another antibiotic to try and treat this. Leah is not complaining of discomfort quite as much, but we still have a ways to go to be back to normal. Thankfully she has had no fever today. Yesterday she spiked a fever part-way through the day, spent a large portion of time shivering, and required blood since her hemoglobin was at an all-time low, 6.9. Today it is back to 8.7. We are still giving GCSF shots, too. In fact, we were scheduled to give one at 9 tonight but when I uncapped the needle discovered the needle was quite bent. So, we had to send it back to the pharmacy to have them replace it. We are still waiting right now for this to take place.

Overall Leah has had a very good day. We have seen a lot of smiling and heard a lot of giggling. This has occured largely because James, the nursing assistant, came to visit us on his day off. He and Chris made a Wal-Mart run for some snacks for Leah, but the real fun was watching Leah laugh hysterically while listening to James sing "99 Bottles of Beer on the Wall" while being shut in our shower. Leah has this need to pick on James and since she is hooked up to her pole she orders me to carry out her evil plans. I got to hold James hostage with a stethoscope wrapped around his neck, lock him in the shower, and tie him up with a medi-slide. It is a good thing James has a great sense of humor and is a good sport about everything.

Leah is still not very hungry, but they have her on a lot of fluids and she has been sick. Tonight for supper there was Olive Garden that had been catered in for our floor. Leah did show some interest in that-especially the olives. It was also Jenny's (one of the nurses) last day at work and Gloria, who works here, too, bought Leah a Dilly Bar she tried out.

Chris came last night and has spent the day here. His plan is to get up quite early in the morning and head back since he works tomorrow. Chloe is still at Grandma Karen's for a while since we don't know when we can head home.

The doctor rounding this week is Dr. DePaola who we got to know in December. We enjoyed him then and continue to enjoy his care even though we wish we were at home. We are also expecting a visit from Dr. Rahdi to tell us what he plans for Leah's next round of chemotherapy. We received another AFP reading yesterday which let us smile for a short went from 15,998 on April 10 to 2164 on April 24. This is another significant reduction. The doctors like that the numbers are falling, but while you would think that we should be quite optimistic, they are not willing to offer that much optimism yet. The whole AFP issue is a confusing one and there is not a great deal of data for them to go on. We do know the cells have a half-life of 7-10 days, so each 7-10 days half of the cells are dying. Yet there is not a one-to-one correlation between the number of AFP cells and cancer cells present exactly. Obviously the higher the AFP the further it must fall. Leah's AFP has shown itself to react initially and then become smart and resistant to chemotherapy and all the doctors have mentioned their concern about this. The faster this number can fall, the better, as far as we are concerned considering there seems to be a window of time when each drug works. I continue to ask Dr. Rahdi a million and one AFP questions they do not seem to have an answer to. A lot of things are dependent on how Leah reacts to different drugs and since everyone has a very individual reaction they really do not have an answer. We continue to need a lot of prayers for an AFP that falls exponentially quickly. Normal range is still 0-9. So, we have a ways to go. Of course as I fall asleep at night I try to calculate out that if it falls to 1000 by next week, then 500, 250, 125, 63, 37, 18, 9, it will take 7 more weeks. Considering we have never been able to calculate anything accurately and things never seem to go as we would like we can't plan on this happening. Faster would be better!

Our other activities of the day included massages for all of us, some art and music for Leah, and some visitors-James, Greg (from Dance Marathon) and some time spent with our nurses. Leah's other new favorite activity is looking at new baby pictures on the Allen Hospital website. We were hoping that Drea's picture would be on there, but no luck yet. However, she likes looking at all the other babies and giggling at how cute they look. She has even read some books in bed. And, believe it or not, I even read a book today, too. I have really fallen down on that these past few months.

It is nearing bedtime. We managed to miss naptime today for some reason. We again thank everyone for cards, phone calls, and all the ways we are remembered by many each day. Please, please continue to pray for a falling AFP that quickly returns to normal, for no new surprises on this journey, for Leah to quickly get over her infection and be able to return home soon, and for wisdom for the doctors as they plan out Leah's course of treatment.

Sunday, April 23, 2006

A Blog from Leah

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April 23, 2006

We have good news and some not so good news today.

First the good news: Drea Rose Behnke was born on April 21, 2006 at 10:?? PM in Waterloo. Drea was in ICU initially due to needing some oxygen and running a fever. Leah and Chloe now have their very first cousin. Leah and I got to see her very briefly yesterday when they bent the rules for us a bit and let us into the ICU. Drea has a lot of black hair and when we left Leah said "she is coot."

Our not so good news: We are in Iowa City. Leah started running a fever yesterday. This means that we automatically get to come to the hospital for at least three days. Considering the fact that we were just here for 16 days we are less than enthusiastic to be back. Leah had her counts taken locally on Thursday and several of them were at an alltime low. This seems rather expected since she is on her sixth round of chemo. At that point we started the GCSF shots and felt that we were at the bottom of her counts dropping. Well, we were wrong. When they took her labs last night her white count was so low they could not even calculate it, so we will be doing GCSF for a while I think. Her platelets were also very low last night. The normal range is 150,000-375,0000 and on Thursday hers were 111,000. Last night they were 12,0o0. So, Leah received a platelet transfusion during the night to get her out of the critical range. A platelet transfusion really does not bring those counts up a great deal we have been told, but will bring them up just enough. She also ran a fever of about 102-103 even on Tylenol all last night. They are culturing her blood to see if she has an infection, but it could be from very low counts as well. And, this morning, we discovered that the rash Leah has developed (much like a diaper rash) is more than just that. It is possibly a herpes virus - like the cold sores you get in your mouth-only in a different area. This is also due to chemo. since it is a breaking down of skin. Leah is finding this latest development a little hard to handle. Who wants a bunch of people looking at your butt? And, she is quite uncomfortable, too. Right now they are sending some more specimens away to be examined so they best know how to treat it. At any rate, it looks like we will be here for a while. They have now added the dreaded "Isolation" sign to our room and we will have to gown ourselves if we want to leave our floor and remain in our room while here. UGH!

So, our prayer request list is long. First and foremost we need the AFP to drop. Exponentially. Quickly. 0-9. We also need for Leah's counts to rise, for the infections that have developed to clear up, for her temperature to return to normal, and for Leah's return to health. So, please, please pray. Dr. Rahdi has decided to take a new AFP reading tomorrow. I have come to dread that number-I used to look forward to it. After reading up on hepatoblastoma it seems there are many horror stories of AFP's that never return to normal and treatment that goes on for years with new cancerous lesions being removed, then returning, more chemo, and on and on. That number is our big tumor marker and indicates active cancer in her body, so we will need it to get to normal and stay there. We ask for everyone to pray for this with us.

My sister and her friend, Lis are coming to visit today. We might sneak in a trip to the roof and library. Otherwise it will be fairly uneventful here. Leah will benefit from a nap since we were up until late last night and then awakened many times to have vitals taken.

Leah wants a nap, which means it is time for me to lay down, too. I am tired out myself, so that sounds like a great plan.

Thursday, April 20, 2006

April 20, 2006

It's been great to have everyone home for a whole week! Leah is doing well. Tina and I commented that she sure seems to be feeling well besides some low counts. We wonder if she is simply used to feeling "crummy" and wills herself to make the best of each day. She did not need a blood transfusion for low hemoglobin, but we did have to start GCSF shots tonight due to low white blood cell counts. Leah's hemoglobin was 8.3, so it was close. We will see what Monday's counts bring. Otherwise there is not too much to report. Chloe is definitely living up to the phrase "terrible twos." I would love to count how many times a day Leah rolls her eyes in a very special way at all of Chloe's antics.

We still continue to be overwhelmed with the support of our families, friends, and communities. All of this support and prayers keep pushing us forward. As the many who were involved in Leah's benefit know, the support and prayers have came nationwide from people we have known our whole lives, as well as from people whom we have never even met. Our hope is that someday, we can also share the same gifts we have received. Whether it be through prayer, guidance to a newly diagnosed family, financial assistance, or simply a card, we are never going to give up hope for a cure for childhood cancer or supporting those unfortunate ones who will be put in our position. So, once again, thanks for joining us in our battle and never forget how blessed we have felt to have you all on our team. As we all read many times in the Psalms -- Oh, give thanks to the Lord, for He is good. He has been our ultimate teammate!



Monday, April 17, 2006

April 17, 2006

All is well at the Ristau house! Leah is feeling good. One would be amazed that she had major surgery less than three weeks ago. I was off today, so Tina and I took Leah to Covenant to have her blood work done. Before we left for the trip, Leah said, "I don't need blood today, but I might on Thursday." Her hemoglobin was 8.7, so she might be right. We'll see if it drops below 8.0 on Thursday. After her blood draw, we followed Leah's request of a trip to Target and lunch at the Olive Garden. Great fun!!! After our return home, Leah and Tina took the stroller to pick up Chloe at the babysitter's house. They ended up playing there for at least an hour and had tons of fun. That meant a lot to our family and hopefully to Leah. She was the "leader of the pack" (the eldest of 5 girls and one boy) at day care before all of this came along. I know she misses being there, and that Karen misses her being there even more.

Easter Sunday was a very hard day for us. We have heard, believed, and always will believe the message for many, many years. It is a hard message to absorb at this stage in our lives, yet I think we were just simply so very worn out after sixteen days in the hospital that we did not give Easter the focus that it deserves. Yet, IT IS THE MOST IMPORTANT HOLIDAY OF THE YEAR! God has shown us much grace and mercy through answering many prayers. We will keep leaning on Him and He will keep showing us the way!

After Leah's benefit, the strength and support she received through your prayers was reflected in her recovery from surgery and in her blood counts. Though we are certainly not out of the woods, her AFP has lowered. We will not be getting another AFP # until before her next round of chemo, her 7th, on May 1st. We just feel that her bravery and strength is deserving of our ultimate goal - remission. There will be many tears shed when we hear those words and that will be ultimate post to this blog. In the meantime, as one of our friends who fought this same battle has always said, "Celebrate Life."



Friday, April 14, 2006

April 14, 2006

We are home! Leah and I finally were able to leave Iowa City around 5 last night. The day went quickly enough, since we were able to get a day pass and went out to a consignment shop in Marion for a while. Then we were back to Iowa City for a CT scan at 1:45. Leah never likes these, although, she does not cry until we actually get in the room. They sedated her and then I waited in the hall until they were done. After that they kept her sedated this time and took her to recovery so they could do an echocardiogram on her again. And while they were at it, they snipped the stitch for her chest tube. When Leah comes out of anesthesia she usually cries for quite a while and fixates on something, too. I am getting used to it and she does not remember it at all. This time she kept repeating that she wanted another CT scan since she missed the whole thing. Everyone found this quite humorous since no one ever asks for another scan.

By the time she was awake enough it was 5:00. While it seemed perfectly lovely out while we were driving back, the horrible weather that hit Iowa City did so shortly after we arrived home. I am glad we were not there for that experience. Leah has become ultra-aware of the weather right now and even a clap of thunder worries her. Had we been there we would have been evacuated to a conference room.

Right now the plan is for us to stay away from Iowa City until May 1 when she returns for more chemo. It will be good to be home. Chloe was quite excited to see us last night. Leah just rolls her eyes at some of what Chloe does. I told Leah this morning that Chloe was talking a lot more and she responds with, "and we can't understand half of what she says!" We plan on visiting Target and having a stroller ride today as well as coloring eggs this evening. Since Leah got everyone up at 6:45 I am hoping a nap is also on our agenda.

Please, please, please keep praying for an AFP that takes a major nose dive and returns to a "normal" range and for Leah to continue to be responsive to chemotherapy. We are also praying for clean scan results that show nothing suspicious.

Wednesday, April 12, 2006

April 12, 2006

The last few days have been the same old routine at the hospital. Leah has definitely been struck with cabin fever. I don't blame her. She feels pretty good, I think, so being hooked up to a machine during this beautiful weather is a big bummer.

Sunday was rather boring for her, but on Monday we did do a few more things and even went upstairs and sat on their roof area and watched helicopters fly in. She enjoyed that and it was beautiful out. My sister, Suz, visted Monday as did our friend, Lis. Yesterday we had massages, went to music therapy, the library and the roof again. Another highlight was the new Dora DVD that was dropped off for her. She had been waiting for it to come out. Although she is only four she is well aware of the release dates of different videos and books she is interested in. On Sunday when I was taking a shower I left her on the computer. Later that day I noticed she had put 11 items into my cart on the She even asked how to check out, but I think I better keep that a secret. The more we are out of the room, the faster the day goes. Her chemo. started on Monday/Tuesday night at 1 AM, so it will be done Wednesday/Thursday at 1 AM. This is a new chemo. drug- doxorubicin with carboplatin and we hope it really knocks her AFP for a loop. The faster it can do this, the better, before her cancer gets "smart" and is resistant to this chemo. drug.

Last night Chris came down with our friend, Andy. Chris stayed overnight with her and will leave today for Sioux City where he has Continuing Ed. on Thursday and Friday. Andy and I drove back quite late since he got a tour of the hospital and we had Leah out walking around for quite a while.

Thursday could prove to be quite interesting for me. We can get discharged in the morning. However, she has a CT scan scheduled for 2 PM. ARGH! At first they wanted us to come back on Friday for this, but I asked if they could please, please do it before then since we have been there so long. This is pretty much a baseline CT so they know what things look like post-surgery. One of the doctors did tell me that we should not be alarmed if they see something they have to go back in and get. I don't think that happens frequently, but it can happen. So, please pray for a clean scan with no surprises. While she is sedated they need to do another echocardiogram. We tried one on Monday but she never really could settle down. Dr. Loew was ready to send her back for another go at it yesterday when I explained to him that part of test involves them pressing directly on her incision where her zyphoid process is. He agreed not to try again, but I suggested if they really needed it that she could have it done while she was in CT. And, just to make it a bigger party, we are also paging surgery so they can cut her stitches for her chest tube then. I will be happy to have these things done, but am not looking forward to recovery time for her. She does not mix well with anesthesia, so this could be a fun end to our day. Considering Chris will be in Sioux City I will get to deal with this alone.

We are definitely looking forward to spending Easter at home. It hardly seems like Lent right now to us since we have been cooped up so long. Again, we ask for your continued prayers- for a clean CT scan, for her chemotherapy's effectiveness and for a dramatic, dramatic drop in her AFP.

Sunday, April 09, 2006

April 9, 2006

Wow! What an awesome benefit! What a wonderful, amazing turnout! Thank you to everyone who volunteered and spent many Wednesday nights-and probably a lot of other time, too- getting things organized. And, thank you to everyone who came to show us their support. We were warned that we might be overwhelmed by the turnout, and we were. It was wonderful to visit with so many people and know that so many people continue to read our blog and pray each day for Leah's recovery. We will definitely continue to need prayers as we desperately need her AFP to drop dramatically into the normal range to know that her cancer is in remission.

Had I known how many people would be at her benefit I should have found a way to stay for its entirety. As it was I headed back to Iowa City to relieve Roshaun and her husband, Tim. They appeared to have survived the evening and got in a little glue-picking for fun. Leah was quite happy to see me and we ended up staying up quite late. Today we have had a lazy Sunday. It has been OK to not have much excitement here, but Leah has proclaimed it boring. Since she feels good it is hard to sit around hooked up to an IV pole not doing normal 4 year old things. She definitely was irritated to find out that Chloe went shopping with Grandma Kathy and Pat -she needs to go shopping, too. Finally we headed to the library and sat on the roof chairs on Floor 8 to be outside. We were able to watch the hospital helicopter fly in which was rather exciting. Usually we just hear it from outside our window. Our floor is quite empty this weekend, so Stephanie, Leah's nurse, had a little time to make a potholder with her and hang out. Leah did enjoy that. Earlier she had bemoaned the fact that "no one even played with me today!"

Hopefully tomorrow will be a bit more entertaining for her-there will be the normal daily activities to occupy us so that helps. Plus, I plan on taking her outside again even if she is hooked up to her IV pole.

While this is repetitive, I will remind you again to pray, pray, pray for this new chemo drug to do its job and really knock her AFP down dramatically and quickly. While the doctors do not think we have run out of options yet, the more drugs we go through, the fewer we have left to choose from. The best indicator of long term prognosis is the AFP's response. Leah's AFP does respond, but seems to become resistent at some point to different drugs. Of course, this has been something I have been praying about constantly already. I think Chris and I were very focused on the resection surgery and viewed this chemo as more of a follow-up, but it is not and is still very, very important for Leah's recovery. So, please continue as you have been doing and pray for Leah's treatment to work and for wisdom for the doctors as well.

And, again, a huge thank you to everyone who shared in Leah's benefit with us. We will never be able to repay everyone for the kindness that has been shown to us.

Saturday, April 08, 2006

April 8, 2006

This evening is Leah's benefit here in Denver. I am in Denver now and will be until sometime this evening when I head back to Iowa City. I came home last night with Chloe and left my mom with Leah. Leah originally thought this sounded fine, but did shed a few tears when I had to leave. This breaks my heart every time it happens, but she seems to recover quickly. Today my mom will be with her until this afternoon when her babysitter, Karen, takes over until 8:00 when Roshaun (Leah's nurse who will not be working but babysitting instead) and her husband Tim come to be with Leah. These people are helping us out tremendously so that I am able to be at her benefit.

We got word yesterday that we will be in Iowa City until next Thursday. They will be starting chemotherapy on Monday (right after her antibiotics for her port infection end). While we are not excited about staying longer, it is good that they are being aggressive about her treatment as well. She will be getting two drugs- Doxorubicin and Carboplatin- that are used in Europe to treat hepatoblastoma. This time it will be administered over a 72 hour time span. While the surgeons feel they got every visible portion of cancer they agree that there could be (and probably are) microscopic bits of cancer remaining. That is why chemotherapy is used. One indicator of that continues to be the AFP level. Leah's is still very high-nowhere close to 0-9. While we have heard it take a while for it to normallize, hers has a long way to go, so we ask that you pray fervently for the AFP to decrease dramatically and be responsive to this chemotherapy.

The other thing I did not mention when I last blogged is that on Wednesday Leah got a haircut. She had been sporting a dread lock and matted blob of hair on the back of her head for months. While it looked bad, she did not look bald. However, after surgery she complained of it pulling on her scalp so we took her to the hospital hair salon and had them remove that portion. It does look neater and there were scabs underneath that hair where it had pulled and bled, so it is good we had it cut. She still has bangs and a fringe around the back, but she does look bald. That breaks my heart, too. I know hair is no big deal and it can grow back, but it is so unnatural to see a child without hair. You know instantly that person is sick. We have suggested hats, bandannas and any other cute thing that would cover her head, but she is not interested and I do not want to make an issue of it either. Why should she think she has to wear a hat to be cute? One of my friends told me her daughter was the same way when she lost her hair and was uninterested in covering up her bald scalp and she was proud of her for not caring about people staring or what others thought. I must admit that I have felt this same pride as Leah walks around bravely while going through this.

Chloe and I plan on getting outside a bit today and enjoying the weather. Chris is working until the afternoon sometime. We hope we see many people at the benefit tonight and can't wait to visit with everyone. Keep praying "lower AFP, lower AFP...."

Thursday, April 06, 2006

April 6, 2006

The past two days have been somewhat better than Tuesday. Leah is not very excited about walking but has done it, despite the many protests. The first time she walked yesterday our nurse Tom took her out in the hall and had her walk back to her bed. She was screaming how it hurt her to walk, but the jumping and stomping she was doing must not have hurt her too badly. It was quite an impressive tantrum, but later that morning she walked from the library to the elevator. Today she has walked a few times as well.

The diet is not improving quickly, but again the surgeons do not think that is odd. She ate Cheerios for breakfast and lunch and then 5 bites of pasta and 2 carrot sticks for supper. Since she threw up after she had milk, guacamole chips and french fries the one day she has decided she no longer likes those foods.

If it were not for her port infection I think we would already be home. They have mentioned that after they have 2 negative blood cultures they may send us home. That would be wonderful. We still have to take oral antibiotics, but that is better than staying here.

I enjoyed my time at home. Chloe was so excited to see me since I surprised her by picking her up at daycare. She is talking a ton right now and told me she missed me over and over again. We were able to take a stroller ride, visit Esther and the triplets and do some playing. Today we went to Target and a consignment shop in Marion for fun. The big thrill of the day is that Chloe is staying over night with Leah and me at the hospital. We shall see how this goes. Leah is not very excited about her one-on-one time being taken up by her sister, but then two seconds later is giggling about what Chloe is doing. I will be alone with the girls til 4 tomorrow night so this could be quite an interesting, challenging day coming up.

Chris did find Leah to be a bit challenging while he was here. She has been trying to exert control in any way she can and we are both struggling to pick our battles and accomplish the items that we must to help her get to go home.

We have been overwhelmed with gifts and cards and many thoughtful gestures. It is wonderful to know so many people are praying and remembering Leah and our family. The benefit is just two days away. Both Chris and I are looking forward to seeing many people that we have not visited with in a long while and those that we see frequently, too.

It should be bedtime now, but Chloe insists she is not tired. So, she is entertaining us all and Leah and Rebecca the nursing assistant are doing a little glue picking.

Tuesday, April 04, 2006

April 4, 2006

Today has been a rather frustrating and depressing day. Leah threw up again late last night and then again every time today when she ate anything. She seems to have developed some psychological phobia about eating and has convinced herself she will get sick. This is very frustrating because she was so good about taking medicine at home and is now crying about each and every drop she is supposed to take. Considering these medicines are rather important, we waste hours trying anything we can to get her to take them, and then she vomits immediately. The bad news of the morning is that she has an infection in her port. So, we are now on antibiotics for 10 days. They have told us that maybe we could go home after a few days if they appear to be working and then give those medicines orally, but she would have to decide she could take things orally again. She will also need to start eating and drinking again. The surgeons still are not worried, but it would be nice if she would eat something. She has finally pooped, so it does appear things are working and we can X that off of our long list of things to worry about.

Dr. Rahdi stopped to see us today as well. He is good at bringing us a note of gloom each time we visit. This is not to say that we dislike him; in fact, Chris and I do like him. He is very matter of fact and pretty much tells it like it is. I am sure some doctors sugar coat things more but the facts are the same. Anyway, the two spots in her lung were metastatic traces of the disease. That is pretty much what we thought all along. The other depressing news is that her AFP actually rose before her surgery. We were unaware of that fact. Originally her AFP was 668,000 before chemo. Then it went down to 170, 000 and rose to 330,000 before starting a new chemo drug. Before the 4th round it was 60,000 and then before surgery it was up to 250,000 again. Now after surgery it is 58,000. While this is good that it has dropped, the normal range is 0-9. Anything above that range indicates cancer present. So, we have a long way to go. The plan is to change the chemo. protocol for the next round and we will continue until the AFP normalizes. I am not sure where we go if it does not/cannot normalize. I believe Dr. Rahdi's comment was that he did not trust this disease at this stage. These are all things we have known, but have been happy about surgery and feeling like we were moving in the right direction that this is another big dose of reality. It is also another heartbreaking reminder of everything that Leah must endure. She is certainly not the only child to know suffering and pain, but the fact that any child must have cancer is terrible, but when it is your child it somehow seems even worse.

Aside from her fever and vomiting Leah did get to have music therapy class with Kirsten and the music therapy intern. Chris happened to ask Elliot the intern if he knew any Jimmy Buffett songs and he ended up playing a few for Chris on his guitar. Later he even brought Chris a CD she had burned of Jimmy's newest CD. Leah painted with a Child Life volunteer and all three of us had a massage. Aunt Suzanne has come for the night and is reading books with Leah. She even stayed with her while Chris and I went for a walk outside. Tomorrow I am going home for a bit. Chris will stay with her tomorrow night and then I will return on Thursday. Right now it is up in the air how long we will be here. Even if Leah is still here Chris and I are working on finding a way for us to both be at her benefit. Leah is quite depressed that she is going to miss "her party" so we are trying to avoid bringing that up.

Leah is waiting for the computer now so she can watch Brady Bunch. Please keep praying for low AFP numbers and chemotherapy to be effective. Also, pray for her infection to clear up and her appetite to return so she wants to eat again. We have seen the power of prayer firsthand and know there are many, many people that remember her each day.

Monday, April 03, 2006

April 3, 2006

Today began at 6 AM when the surgical residents rounded on Leah. It was still dark out and I was trying to convince Leah that it was still nighttime, but how believable am I when the doctors are there to poke on you? After seeing her they immediately decided she no longer needed the monitors and we got to take the electrodes off and the pulse oximeter on her finger. So, all we have now is the port that they are actually happy to lock off for us so we can walk around without any extra equipment.

I did notice that Leah had managed to wet through her pull-up, pajamas and bedding-and my pajamas as well. This I will fully take the blame for. Each time she told me she needed to use the bathroom last night I told her to use her pullup since she had so many wires hooked up it would have been difficult to get to the bathroom. Add to that the fact that she cannot walk on her own and I have the IV pole to push, too, and the pull up sounded like a great plan. Always devious, Leah decided not to have her bedding changed until 7 when her James came on shift. Unfortunately for us James got out of this treat since he was on his way downstairs to work today. Leah was so proud of herself, too.

Chris and I took Leah in the wagon to the library which she enjoyed. She did not nap at all today and is quite tired, but we have been happy that she is up a bit more. My parents came for a 30 minute visit to drop off Grandma Kathy cookies (although Grandpa made this batch, I think) and in the span of that visit Leah threw up twice. So, we are not planning on coming home tomorrow or Wednesday like we dreamed of. She has napped and seems better tonight after having some Tylenol. We have even heard her pass gas, which is probably too much information, but important for us if we ever plan on leaving.

Tonight Chris managed to sneak out with James to The Vine to watch the basketball game. I was attempting to watch the game, but Sesame Street Christmas is much more important, so that is what we are viewing now.

In addition to all the prayers for Leah, we ask that you remember the family of Bryce and Cyndi Davis in your prayers as well. Their 20 month old daughter Courtney passed away yesterday after an 8 month battle with cancer. Although we did not know them well, we were often here for treatments at the same time, and enjoyed watching their beautiful daughter playing in the lounge or at activities with Leah. We have followed Courtney's battle via their web site: page name: courtneydavis, and have been inspired and amazed by their continued faith in God and belief in His plan for Courtney.

Sunday, April 02, 2006

April 2, 2006

Just a quick update tonight. Leah is ready for bed and needs me to lie down by her so she can hold my hair. Leah had a good day today and also a good night of sleep last night. This morning they removed her spinal epidural and then a bit later took out her chest tube that had been draining fluid from her pleural space. This afternoon she had her catheter removed and was even up to use the bathroom once. Her morphine dose has been cut in half and she has not had any oral medicines, either. Leah is still not hungry. Her diet today consisted of 3 guacamole potato chips and 3 french fries. I am sure they would like her to eat a bit, but don't seem very concerned now. However, I am also sure we will be here until she can show us that her bowel is working. Tonight we were moved to our normal unit. There really was no reason we could even dream up to remain in PICU even though the one on one attention there was wonderful. In some ways it is good to be in familiar surroundings, Yet, at the same time it would be nice to think that after surgery we were done and had won the battle we are fighting. This is not the case yet which just goes to show what a horrible disease cancer is. I am dreading the next four rounds of chemo and watching the AFP number hopefully drop. It all seems enough to make me crazy as we focus on this number we have no control of. So, keep praying for her next rounds of chemo to be effective and the AFP to be responsive. We have seen the power of prayer already with the many hurdles we have overcome and the thousands of people who pray for Leah each and every day.

Saturday, April 01, 2006

April 1, 2006

It seems hard to believe it is April already! Not a single person at the hospital has even attempted an April Fool's Joke, so it is quite unlike being in a building full of elementary school children.

Leah did not sleep well last night at all. She is getting two pain meds via a spinal catheter. In her port she is getting a continuous drip of morphine and then she also was getting an extra dose in her port every two hours. Needless to say she was quite well drugged and the more she was getting the more agitated she was becoming. Instead of sleeping peacefully she was very irritated and continued to move around and could not relax. Today we decided we would try to discourage the additional dose of morphine every two hours and let some of the medicines wear off a bit. The results have been quite good. She is still somewhat out of it and can be talking to you one minute and have her eyes rolling in the back of her head the next, but she has been able to take a couple of lengthy, restful naps that have helped out a lot. She has also sat up (with help) and even sat on my lap for a bit. She is very confined as to how much she can move so this has all taken place in her bed with me and a nurse or two assisting her so she does not pull out any tubes. Today has also been the best so far in terms of her appetite. She is still only allowed liquids and that continues to be irritating to her. She finally consented to trying a lemon Italian Ice and sucking the juice from an orange as well as sipping on milk and pop. The doctors are unconcerned about this and would rather she take it slow until her bowels wake up more. The last thing anyone wants is for her to vomit and make her incision even more painful than it already is. We are also still in PICU. This is rather nice because of the individual attention she receives. We love our normal unit, but they are busy and have a lot of patients right now and Leah requires a lot of work. Our nurse could be helping us every five minutes it seems at different points.

Overall we are still quite pleased that she is doing as well as she is and appears to be feeling a bit better each day. Certainly it is slow going, but we are moving in the right direction. We ask for continued prayers for her healing as well as prayers for her chemotherapy's effectiveness and an AFP reading that returns to a normal level (they will be checking this soon and while tumor removal is the cornerstone of her treatment, an elevated AFP indicates cancer is still present). We continue to be so thankful for the prayers, messages, gifts, and kindness of friends, family and strangers as well during this time in our lives.