Saturday, December 31, 2005

New Year's Eve 2005

It is hard to believe that tomorrow will be 2006 already. It just hit me today that on Tuesday I will be going back to school-at least part-time. I honestly cannot say that I have felt like I have had any time off this year even though I have been at home a lot.

As the year draws to a close we of course remember the many different events of 2005. We have been blessed in so many ways, despite the news of Leah's illness in November. Our friends and family have been so important to us in this past month as we look forward to phone calls, emails, cards from many different people-some we do not know well at all. We have also been fortunate to have many, many different individuals and church families praying for Leah, and hope they continue to do so for quite some time. The Leah Ristau Fund has received numerous donations to help us with medical expenses, another blessing as we are amazed by the generosity of so many. Chris and I have been able to reconnect with many friends who have reached out to us after we have lost touch with them over time. We hope that as 2006 comes to a close next year we will be able to add to our list of blessings the fact that Leah Ristau is a cancer survivor.

Our days at home are not as eventful as the ones in the hospital in terms of information we glean about Leah's health, but they are much more fun. Today Leah got up early in order to come downstairs and lay down. I woke her up at 3:30 AM to give her Zoforan an anti-nausea drug she is supposed to take for 3 days after discharge. There is another drug for nausea she is also supposed to take, dexamethazone. However, I gave it to her when she got up and she promptly threw up. So, I waited until she ate her whole 6 bites of pancake, tried it again, and she threw up again. After this happened I decided to call Iowa City and talked with Dr. Sarvada who we have come to know well these past few weeks. Her instant reaction when she heard my voice was to worry that the Princessa, as she calls Leah, had another fever. When I told her about the vomiting, she told me to discontinue this medicine. Great news! One less drug to take each day.

Leah desperately wanted to go to Grandma Kathy's today without Chloe so my mom picked her up and she spent the afternoon there helping bake cookies and napping. I came with Chloe after we both had naps and even snuck a workout in while I was there.

Yesterday on the van ride home I gave Leah her Love for Leah bracelet and explained that people were wearing them because they knew she was in the hospital and wanted her to get better. She looks at me, sighs, and says, "Tina (insert an eye-roll by Leah here), I am not sick."
Kind of amazing, and probably a good attitude to have.

Please continue to send your prayers for Leah's treatment to be effective, for ability to remain without side-effects after chemotherapy, and for her strength of spirit as we continue this long road to recovery.

Many blessings in 2006 to all.

Friday, December 30, 2005

December 30, 2005

Tonight all of the Ristaus are at home in Denver. We were quite happily surprised that they discharged Leah today. She received the last two of her three drug chemotherapy treatment this morning. While we questioned the doctors about whether they felt we would be heading right back to the hospital again if she ran a fever, they insisted it was fine to go home and could find no reason to keep her there.

Leah and Chris spent a sleepless night at the hospital last night-at least it was sleepless for Chris. If you want rest, a hospital is the last place I would recommend. Leah had a meltdown during the night as well and insisted during this tantrum that she needed her mommy. One of the side effects of her chemotherapy was listed as increased irritability. I am not sure we can place all the blame for her crabbiness on chemotherapy, yet if I had as many drugs in my body as she does, I would be crabby, too. So, we are picking our battles and grinning and bearing many of her moods. We have heard "you're naughty, Tina," "For pete's sake, Chris," "I will poke you in the face," "get your stinkin' face out of mine," and many other teeth-gritting comments from her. When the parenting advice books are being written, they certainly do not have this situation in mind.

I enjoyed my night at home last night and when Chris called at 8:30 this morning he was appalled that I was still in bed. This is highly unusual for me, but I have had very few consecutive hours of sleep for I don't know how long, and since Chloe was still in bed, I figured I could take advantage of this. I managed a quick run on the treadmill this morning, and Chloe managed to empty an entire roll of toilet paper into the upstairs toilet while I was putting clean clothes away up there. Every time I saw her she insisted she was blowing her nose. It was only after the fifth time she told me this that I clued in to the fact that something was not quite right and investigated further.

Leah's appetite continues to be poor. Her diet today consisted of a few bites of oatmeal, 2 glasses of whole milk, 10 bites of macaroni and cheese, 5 bites of bread, 6 peanut butter M&M's and half a chicken nugget. I am anxious for the new medicine to start to work since it is difficult to come up with many different food options, prepare them, and then have them rejected.

My sister has ordered a wig for Leah that should arrive within a few weeks. It has been difficult to find a small wig for her, so we have had to do a bit of research to come up with something. I am doubtful that she will enjoy wearing it, but since she is requesting one, do want to find one for her. She is hair-fixated and has always spent a great deal of time twirling it around her fingers, so to have nothing to use as a comfort in this stressful situation will be difficult for her. Her hair has been shedding heavily for over a week now, and I am surprised she is not entirely bald already; there are bald patches, so I am sure baldness will happen soon.

We have had a good evening of watching Dora videos and reading books. Leah continues to feel well after her chemotherapy, and has not complained of any type of pain. Tonight when we were putting her to bed she was jumping up and down on her bed. Just seeing her do this was an instant heads-up to me since I cannot even remember the last time she wanted to jump around like that. It was definitely long before I took her to the doctor, and I wonder how long she was uncomfortable because of the mass in her abdomen, and unable to communicate to us what was wrong, except for in very subtle ways. These things are so obvious now, but were so easy to miss before.

As Leah pointed out earlier to us, there is only one day left in this year. She is looking forward to 2006 and being five, and we are looking forward to many happy, healthy days in the new year as well.

Thursday, December 29, 2005

December 29, 2005

Leah and I had a very tiring night on Wednesday, but I am happy to report that she still appears to feel fine after receiving Cisplatin. Her Cisplatin dose ended at 9:00 and as part of the protocol she must empty her bladder every two hours. We were up at 11, 1, 3, 5 and 7 to use the bathroom and a variety of other times when her machines started beeping or they needed her temperature taken. We certainly did not rush out of bed this morning.

Leah decided last night that she was just too hot. First I turned down the thermostat to some arctic temperature and then she requested a fan be turned on. This would have been fine if our fleece blankets had not been accidentally left in the van. We both had thin, hospital issue blankets that definitely were not cozy. Leah did not seem to mind this at all since she requested this freeze-out, but I felt like my nose was numb much of the time. The one perk about this was that every time I took her temperature during the night it was very low! I might need to try this technique more often.

Leah is taking medication to improve her appetite, but as of yet we have not noticed an improvement. They have said it will take 7-10 days before we notice a change. Today she ate 7 pretzels, 10 bites of spaghettios and half an order of french fries from Burger King. She does eat, but very little.

My friend, Kristin, came for a visit this morning that was much appreciated. It helps our time pass much more quickly, and she was able to join us for our daily library visit. This is also important to have help along to carry our books and videos back for us.

Chris is spending the night in Iowa City with Leah and I am in Denver. He and our friend, Heather, came down around 7:30, we all were there for an hour and then Heather and I headed back. Leah enjoyed a wagon ride around the hospital with us as she pointed out different places to Heather.

Tomorrow Leah receives Vincristine and 5FU. Technically they would like to discharge us, yet they also know that every time she has received Vincristine in the past a fever has followed. If we would get home and she would spike a fever we would need to return to Iowa City immediately. Tomorrow Chris will be discussing with Dr. DePaola whether we are better off staying an additional night to be sure that we are not turning around and heading right back.

Our other perk of the day is that Michael, another patient that Leah met before Christmas is back. While we don't wish hospital stays on anyone, it is always good to see a familiar face. Michael is a wonderful teen-age boy/young man who has been so kind to Leah--he will even play dolls with her. He has a happy personality and a big smile that are hard to resist. Often he is alone at the hospital because his mom is a single mother and must work in addition to having other children at home. Tomorrow he is undergoing surgery, so we ask that you remember Michael in your prayers as well.

Today has been a good day and we are hopeful that Leah's chemotherapy side effects will be minimal. She has made it an entire day without nausea and vomiting, so we feel that is a good sign. We continue to pray for God's healing hand in restoring Leah to health.

Wednesday, December 28, 2005

December 28, 2005

Tonight we are back in Iowa City as scheduled. Leah and I left with Grandpa Arlyn around 5:30 this morning. We had enough time to stop at McDonalds for breakfast and put some Emla cream and Tegaderm on her port site. This has been the first time we have had to arrive at the clinic for admittance and some initial labwork, but we know what to expect now. Her appointment was at 8 AM, and the usual round of listening with a stethoscope, weighing her, taking her temperature, and measuring her were done in addition to one last urine sample. Yesterday we had to collect her urine for twenty four hours so this last sample was added to the attractive orange jug we had the privilege of lugging around with us. Leah chose Grandpa to carry her potty around. Lucky guy. We were fortunate enough to have Tom as our nurse in the clinic. Again, he was the nurse we had when we were initially in the clinic (November 29?) and Leah had an MRI. He accessed her port quickly and took some blood samples and then we met with Nita. Normally we will be seeing Mary in the Middle but she is on vacation this week, so Nita met with us and we reviewed some of the different side effects of treatment. (Later on we had a hearing check with the audiologist and her creatine clearance (urine check) results came back-all is good!). They are concerned about her lack of appetite. This is something we have been fighting at home. Leah has never been a big eater, but she picks at things now and after a few bites claims she is full. Tonight we have started her on a medication to increase appetite. This drug is supposed to have few other side effects. So we hope that we see her requesting lots of yummy treats soon.

After the initial meetings in the clinic we were sent upstairs. It feels like we have never left-I am not so sure that is a good thing. Kristi was her nurse today and James was here, too. Leah made sure to bring back the big orange foam Wartburg hand that Lis gave her so she could spank him. Nancy the resident was here as was Anuhba, Dr. Ellen and Dr. Rahdi. When we arrived at the clinic her temperature was 98.6, but within being here an hour or two it had already risen to 101.6. So, we are back to the unexplainable fevers! Perhaps a hospital allergy? She received Tylenol which does bring the temperature down and they decided to start her on an antibiotic only because they must be cautious with her care, but all again agree that this is tumor related. Chemotherapy (cisplatin) started around 5 PM. It is just a drip into her tube attached to her port and currently she is sleeping right through it. This drug can cause a great deal of nausea. Today in the clinic they expressed again how well she did with her first treatment by only throwing up once in the hospital and twice at home. We so hope that is the case again. Her AFP was measured again today. It is now 198,522. It did go down again, but not as signifcantly as the other weeks. The doctors say that the combination of three chemo. drugs make it go down more dramatically than when she receives Vincristine alone, so the week it went down the most was the first and then as the Cisplatin works it's way out of her system the decrease in AFP continues to be smaller. However, it is still declining. And, Dr. Ellen and Dr. Rahdi both commented that her stomach looked smaller. It has been difficult for us to tell at home. Some days when I think it looks smaller Chris thinks it looks enormous, or vice versa. She definitely is not as sensitive about touching it, so perhaps it is not as painful as it once was.

Tonight we will be up every two hours to clear her bladder. The drugs she is receiving are very hard on her system, so it is important that her bladder get cleared out to prevent kidney damage and also because cisplatin can burn the bladder. I am anxious to see what tomorrow holds in terms of how Leah feels. We continue to pray for her fevers to cease and for her to remain responsive to the chemotherapy.

Tuesday, December 27, 2005

Love For Leah Bracelets

As a way of informing the most people of this at one time, Love For Leah Bracelets are being sold as a fundraiser for Leah.

Sara Hunemiller, a fourth grader in Janesville (she was a first grade student of mine a few years ago) came up with the idea of selling bracelets for Leah. They are much like the Lance Armstrong Live Strong Bracelets, except these are purple, Leah's favorite color. They say Love For Leah and have four hearts on them, one for each member of our family. Their cost is $3 and they come in child, medium, and adult sizes. I have told many people about them already, and now that the first shipment is in Sara is ready to take orders. You can contact her (and her mom, Vickie) at to place an order or if you are interested in helping her sell some yourself.

Monday, December 26, 2005

December 26, 2005

Today has been another great day at home. It is amazing how wonderful it is to feel normal, even if it is temporary. Leah has had another good, feverless day. I could tell she was tired today, but am not surprised. She has spent much of the past three weeks lying in bed and lately she has stayed up playing and being social much later than we normally would let her be up. One of her preschool teachers came to see her today and she enjoyed that a lot. Tomorrow she has a playdate set up with a preschool friend. Our one abnormal activity is getting a blood draw tomorrow morning. We have mentioned this and the fact that we will be going back to Iowa City, and both have been met with a few groans and whining. I cannot say I blame her because I am not excited about this at all. I think Chris and I are a bit more ready for what the Cisplatin does to her and how it makes her feel. We also have felt that these past few days that she has been home have been so much less stress-filled than when we brought her home after she received Cisplatin. Had school been in session we would have happily sent her this week.

Right now our appointment on Wednesday is at 8 AM in the clinic. From there we will be admitted to a room for her chemotherapy treatment. I would love to only be there for a few days, but am preparing myself for more.

Although we have consistently asked you to pray for Leah's health, we also ask that you also put Leah on your church's prayer list. We believe in the power of prayer and God's ability to work miracles.

Sunday, December 25, 2005

Christmas Day, 2005

We have thoroughly enjoyed being home for Christmas and having a more normal life, even if it is just for a few days. Leah has not had a fever since we have been here. I have given her Tylenol every eight or nine hours because she says her body hurts, but she has not been hot to the touch at all and has been running around and playing. She may not be quite the same Leah as she was before all of this started, but she is definitely better than when we brought her home after her chemotherapy a few weeks ago. That was much scarier because she just laid around and moaned and need constant attention. Now she giggles about things and bosses us all around; definitely more herself.

Santa came through for her this year and brought the Dora House she had been asking for. Betweeen Santa and the two grandmas Leah and Chloe have everything for that dollhouse that they make. They also got tons of other cool things from Santa and other people who dropped off gifts for us. I am not sure where all of these things will go yet. We opened Santa gifts this morning and then had Christmas at my parents' house. This evening Chris' parents came over and we opened more gifts.

Leah has not had much of an appetite. She was very excited to make pancakes this morning since that has been a weekly ritual for us, yet ate only a few bits of one pancake. We managed to get a cookie down her this afternoon, and finally this evening she ate some macaroni and cheese and a few other things. It seems there is always something to worry about, though. The vincristine she is on can cause constipation, and she has yet to really go to the bathroom since her CT scan on Wednesday. This is driving me crazy because I am giving her the Miralax from the hospital and Milk of Magnesia to counteract the Vincristine, and still she does not go. I will say that on Thursday, Friday, and Saturday she barely at anything at all. Friday alone she may have eaten 10 bites of food all day, so I doubt she is horribly constipated, but if she does not go by noon tomorrow I am going to have to call the hospital. I will be so depressed if we need to go back a day early to take care of a bathroom problem!

Tomorrow night Chris and I are tentatively planning on going out for supper. Our 8th anniversary is on the 27th, as is my birthday. I don't think either of us feel like celebrating, yet we have not had a moment to ourselves for quite some time. We are either trading off who stays in Denver or Iowa City, or dealing with two young children who both want attention because our lives have been turned upside down.

It is one month ago that we received Leah's diagnosis. I can still replay the visit to Dr. Sims' office on the Wednesday before Thanksgiving in my mind, but I try not to do that too often. I am a chronic worrier yet I am working hard not to let myself think of all the what ifs that may or may not happen.

"So don't worry about tomorrow. Tomorrow will take care of itself. Each day has enough trouble of its own." Matthew 6:34

Saturday, December 24, 2005

December 24, 2005

Merry Christmas from our home in Denver! This morning we were told that they planned to release Leah-what a great present! Rene and Hetti, two different doctors covering for the holidays, met with me to explain that Leah's fevers continue to be unexplainable. They have researched everything they can possibly research and no one has any answers. The infectious disease doctor also felt there was nothing more to be gained by further hospitalizations. So, in a highly unprecedented move (they have highlighted that several times) they have sent Leah home. We will continue to monitor her fevers closely, can give Tylenol if we feel she is developing one, and unless we need to do so sooner, should come back next week Wednesday for round two of chemotherapy. Dr. Goldman also met with us before our release. He is another staff doctor in the hem/onc unit, and since he will be the one doing rounds for three weeks in January, we will be seeing more of him. I had called Chris this morning to tell him we needed a ride home, catching him entirely by surprise. He arrived just as Dr. Goldman had stopped to talk with us, so he, too, was able to hear about our unique discharge instructions. Normally two fevers in twenty-four hours of 100+ would mean a trip to Iowa City. One fever of over 101 would also mean an instant trip to the hospital. Leah can have a fever of 102 before we should be concerned. While they have all considered the Vincristine chemotherapy drug as a possible culprit, the general concensus seems to be that the tumor is probably causing the fever. The vincristine Leah receives each week may cause a fever to spike because it is a direct attack on her tumor. Chris and I have both hesitantly stated that we think maybe, just maybe, her tummy looks slightly smaller. This could be because the swelling from surgery has gone down. Every doctor we have met with has stressed that it is too early to be able to measure tumor size difference. The only thing they are concerned with is her AFP (alphafetoprotein) as a marker of chemotherapy effectiveness, and the numbers we receive each week in regards to this are quite positive. We know we have many bumps in the road; they have told us we are on a roller coaster ride, yet we are very happy to be at home for Christmas as a family. This year's celebration of the birth of our Savior is especially meaningful to us.

Merry Christmas to all!

Friday, December 23, 2005

December 23, 2005

Today I feel as though we have taken a step backward. In some ways it has been an interesting day. I have talked with Dr. DiPaola and his residents many times, as well as Mary in the Middle. Leah had a fever during the night last night and has had one much of the day. After looking at the calendar (while I wasn't sleeping last night) I realized that the fevers seem to have something to do with the Vincristine doses she gets. When we arrived on Monday night (Dec 12) Leah's fever that she had at home was magically gone. She never had another fever until they administered Vincristine, right before we were supposed to be discharged. Suddenly Leah develops a fever and we are staying longer. Her fever spiked to its highest level two nights after she had Vincristine. The same trend seems to be occurring this week, which means that Leah's fever should spike tonight, or maybe has today sometime. I am having the nurses print this information out for Dr. Goldman, who rounds tomorrow. I do really want to come home, but also really don't want to risk making decisions about her health that the doctors need to be making. So, I have reserved a room in the Rossi House in the event that we are here for Christmas and Chris and Chloe will come down. Santa will have to visit Iowa City if that happens. While it is not like home, Christmas this year will not be "normal" for us no matter where we celebrate.

The doctors are trying to determine the source of these fevers, and are trying to cover all their bases. We continue to get the reassurance that they feel there is no real source of infection, but because her symptoms persist they continue to look at various things. Today we had a chest X-ray that Leah hated. (It seems the more people touch her and she has different things done to her, the more agitated she becomes). I also met with another doctor who is an infectious disease expert so he could go over her charts and see if there is a pattern to her fevers. He also looked at her and determined that she does look well, aside from the fevers she runs. He is planning on meeting with Dr. Goldman tomorrow to discuss Leah with him. We have heard that it is very rare to run a fever with Vincristine, yet Leah's condition is very rare.

Suzanne came again today since she had the day off. Lis also visited and the two of them went out to eat and brought supper back for me. Leah has not felt well all day. She has slept a lot and not had much energy. Her appetite is not good right now, either, and we try to encourage as much eating as possible.

Last night was quite lonely on our floor. Tonight there are a few more patients, although they are working hard to get as many people discharged for the holidays as possible.

Continue to pray for Leah and for much healing to occur for her.

Thursday, December 22, 2005

December 22, 2005

Greetings once again from Iowa City. I have returned to take care of Leah. This morning my brother, A.Jay, and my mom came down to relieve Chris. They left before the sun was up, since Chris arrived back in Denver with A.Jay a little after 7:30 AM. Chris quickly got ready for work and I accomplished very little as I moved from task to task without finishing anything. I did manage to get Chloe to daycare for an hour while I ran. It is amazing how four miles seemed so far to run today-I have not run in so long that I expected it would not be as easy as it used to be. I repacked a few days clothes for both of us and a few other items and then started the trip to Iowa City with A.Jay and my sister-in-law, Anna, and Chloe.

When we arrived Leah was sleeping, so in her typical fashion had to be fully awake before she could really be any fun to be around. She had walked to the library and back with my mother earlier in the day, and had also spent time blowing bubbles (this is to help her lungs inflate as they should). My aunt and uncle, Carol and Mike, also stopped by, so Leah gave us all the tour and moved right along with her doll, Bitty, in the doll stroller we brought down. We walked for quite a while with Leah giving the directions of where we should go. She is able to navigate her way quite well.

A.Jay and I left for the Iowa game -which is only a 5 minute walk away-and my mom and Anna were left with the girls. Leah had Bingo tonight and even went to the activity without my mom or Anna going with her. This is the first time she has ever wanted to be there by herself. She came back with a few different prizes after it was done.

Carol and Mike had eaten supper in Iowa City and helped us out by bringing back cookie dough that I am using with ice cream to make a Dairy Queen blizzard for Leah. She is pretty smart, so I am not sure I can trick her, but she has requested Dairy Queen a few times, and that is hard to come by. Right now we would do just about anything to have her eat more.

I did not speak with Dr. DiPaola today because I did not arrive until the afternoon. My mom spoke with him and also felt he was quite a nice man. I did speak with Nancy, the resident, on the phone in the morning and then saw her in person when I arrived. Today was the day that they checked Leah's AFP counts. When chemotherapy began her AFP was around the 668,000 range. 10 days after her first treatment her AFP was at 377,000 and today after another week it is at 232,077. It is definitely making some good improvements. The other good news is that her counts continue to climb. This should be the last night that we give the GCSF shot. I will be happy to discontinue that for a bit. Leah cried tonight when I had to give it to her, but does request me. She is also getting pretty smart about how the shot routine works. Once the needle is in, we slowly push the GCSF in while slowly counting to 10. Before I had the needle in her leg Leah was yelling at me to count to 10 - fast!

We have heard the words "home," "Friday," and "Leah," all in the same sentence now, but this also accompanies the words "no fever." I would love to be at home for a bit, but do not want them to send us if we must return immediately because she begins to run fevers right away again. The doctors do try to have patients home for Christmas; there are only 5 patients in our wing that can have 25. It is rather lonely to be here knowing that all the others have been sent home, but her care needs to be the primary focus.

Leah is also starting to lose her hair. It is not coming out in clumps, but it seems as though she is shedding a lot. So far it is not noticeable on her head. Chris talked with the Child Life worker, Emily, about a wig, but after they called the salon in the hospital they were told they did not have any in Leah's size. I will have to do some research on this, since she has requested one and is a chronic hair twirler when she is nervous or scared. Since she is both of those things much of the time right now, it is hard to imagine what she will use as her comfort when her hair is gone.

I do feel somewhat rejuvenated after being away for a bit. The time off from the hospital has been a welcome and much needed break.

This is the season of miracles, and we continue to pray for God to work miracles with Leah.

Jesus said to him, "If you can believe, all things are possible to him who believes." Mark 9:23

Wednesday, December 21, 2005

December 21, 2005

Today was my first day back at school since I left for Christmas break. I must admit I found the whole day rather overwhelming. It was wonderful to have so many people express their concern and lend support, and great to hear the kids welcome me back. It was also good for me to have something else to focus my mind on for a while, even though Leah was never far from my thoughts.

Chris was with her all day in Iowa City, and they apparently got along just fine. I must have called them ten times at least, so the idea of me really being able to get away from things for a bit, was impossible. Chris assures me he has everything under control, which I am sure he does, but the control freak in me finds it impossible to let things go.

Leah's CT scan was scheduled for 3 PM. That means she was unable to eat or drink at all today. When I called this morning they were on their way to story time in the library. We were also very fortunate to have Tom as Leah's nurse today. I think there is something to be said for the connections that are established with the people who have been with us in this ordeal since the beginning. Tom was the nurse Leah had the day she had her MRI done and is only on the 7th floor one day each week, but we have had an instant bond with him, and are happy to see him each week when he is on our floor.

Originally this morning Chris told me they were planning on starting the anti-fungal medication. After hanging up and thinking about this I had many questions as to why they decided this. Since they were planning on doing a CT in the afternoon to determine this, why not just wait to start the medication? Antifungal medications are pretty hard-hitting, so to start one without knowing if there was an infection seemed rather strange to me. Since I am miles away and have not talked with the doctors, it is hard to know if they discussed this with Chris or what their rationale was. A number of different phone calls followed with me asking many questions and Chris trying to give me answers.

The CT scan was scheduled for 3:00, and luckily for us the mother we met yesterday offered us a wonderful solution to Leah's problem with the barium drink. The resident, Nancy, looked into things when Chris suggested this last night and Leah was sedated with something through her port and then intubated to receive the barium. I called Chris at 3:30 to be told that she was in her CT scan. His question to me was "Did you know Night Ranger sang Sister Christian?" While Leah was busy having her scan he was busy playing music trivia with the nurses! I had to give him a hard time about leaving our child alone for this procedure, but James had gone with her and she was under anesthesia, so I suppose I can give him a break this time.

The results of the scan show nothing alarmingly wrong with her-aside from her obvious problem. She does have pockets of her lungs that are not inflating all the way, due to the fact that she has been in bed and not running around and exercising her lungs for too long. Apparently they feel this has been causing her fever. The anti-fungal medication was never started, either. Once they took her blood this afternoon and her counts started rising they felt there was no danger of a fungal infection, because to have that her counts would not have come back up. There is some technical/medical definition for this and Chris said that when Dr. DiPaola was explaining it all Leah was coming out of sedation and crying so he could not hear it. Later he wrote down what the resident Anuhba called her condition, but if you have seen Chris' handwriting, it may as well be Greek.

While I don't think Chris' day was fun for him, it does not sound as bad as my day on Sunday when she was sedated four times without it working. They appear to be getting along well, and when I have called Leah does not want to talk to me on the phone and says she does not even miss me. I am actually glad for that. It would be much worse to hear her crying in the background.

Chris gave Leah her shot tonight. She is toughening up; she did not even cry. I talked to a co-worker of mine today who is a cancer survivor. She, too, had to receive the GCSF shot and told me it was one of the most painful things of her treatment. I did not doubt Leah when she said it hurt because she rarely complains of pain, but having an adult say that makes me realize how very much they must hurt her.

I have enjoyed being with Chloe and am realizing how much more verbal she is becoming. I would attribute this largely to her sister's absence. She no longer has someone deciding what she says before she even opens her mouth. It is fun to hear her talking and seeing the wheels turn in her mind. She definitely has her own ideas.

Early tomorrow morning my mom and brother, A.Jay, are heading down to Iowa City. Chris is then heading back with A. Jay so he can go to work. My mom will spend the day with Leah, and then in the afternoon I will head down with A.Jay and Chloe. Apparently my brother does not mind riding in the car and is looking forward to some stimulating conversation. My friend Peg is giving me tickets to the Hawk game tomorrow night, which I will go to with AJay. After that is done he and my mom and Chloe will head back and I will be in Iowa City again for a bit. I would like to tell you that they have said when we can come home. However, the same rules apply: Leah needs to be without a fever for 72 hours. If that means exercising her lungs, we may have her doing wind sprints up and down the hall very soon.

Today we are happy we have some answers about her fever, even though the solution will not occur immediately. We are also thankful that her CT scan was not as traumatic as her previous experiences. We also pray that her counts will continue to rise, and that her AFP, which they check tomorrow, will again show a dramatic decline.

Tuesday, December 20, 2005

December 20, 2005

I write this post from home tonight. While I have made it home Leah remains in Iowa City. Once again she spiked a fever. This is frustrating to us and seems to have the doctors puzzled. As a means of ruling out a fungal infection they are doing a CT scan tomorrow under general anesthesia. While I feel extremely guilty for leaving her, I am planning on teaching tomorrow, the day before Christmas break begins. Chris has tomorrow off, so he and Chloe came down for the evening, and Chloe and I headed back for Denver around 9 PM.

While I do feel extremely guilty for leaving, I am also in need of a break. The longer I have been in Iowa City the more isolated I feel and the more frustrated and upset I have become over the lack of answers about her fever. Today was not a very good day, either, since when she has fevers Leah is more tired and cranky. Her counts are still low, which again is contributing to her mood and energy level. We managed to make it to the library, of course, so at least Leah has some desire to be a part of the goings on there.

When Chris arrived tonight we were able to take the girls for a wagon ride around the hospital, which they both enjoyed. Leah is continuing to receive the GCSF shots, and this time I administered it to her. I have never wanted to get or give a shot in my entire life, and certainly not to my child. Leah somehow seems to find comfort in the fact that I be the one poking her and requests me to do it. Since we have to know how anyway, and will be doing it at home on our own, I feel it is better to practice with a nurse watching and coaching me. Chris practiced, too, after I was done, on our nurse Jenny.

We also met another mother today who was able to offer some encouragement. Her son has been receiving treatment for two years for cancer as well. Because she has been dealing with the doctors and different procedures for such a long time she definitely knows some of the ins and outs of chemotherapy, CT scans and other forms of treatment. While we were not able to talk long, I am hoping to have the chance to speak with her again at some point; there are many questions I have for her.

Another small highlight of the day was the fact that Leah walked all the way to the library and back today, and even a few other places. This is more walking than she has done in three weeks. Some of that is due to her surgery and incision, the other part is that her abdomen truly does hurt her and may even be inflamed because of her treatment. I was quite happy with this development today-in fact, she is still hooked up to her IV pole and was walking quickly enough that I had to work to keep up with her and make sure it did not pull her port tube out.

While it is nice to be home and have a break, my thoughts will certainly by with Chris and Leah tomorrow as Leah undergoes the CT scan. And, somehow, home does not really seem like home right now to me, either. I plan to return to Iowa City Friday morning. My mom is going to spend tomorrow night with her so that Chris, Chloe and I can all be in Denver for one night. I have a few Christmas things to get lined up and other odds and ends to deal with as well. Since Thanksgiving when Leah was diagnosed, I have been home a total of 8 days. In some ways it seems like long ago, and in others it feels as though it was just yesterday.

Keep Leah in your thoughts and prayers as she faces another CT scan tomorrow.

Monday, December 19, 2005

December 19, 2005

We feel as though we see a light at the end of the tunnel in terms of when we may get to come home. Of course, each time I say this things seem to change quickly, and we end up staying longer than planned.

Leah had a good day today. We got up early for us here and she got ready for preschool since she is able to go there each day for an hour in the morning. It is not like Sonshine-she is the only student, and there are not any cute songs or art projects, so that makes me sad, but she thought it was OK. I still felt like Leah was not quite herself after all the different sedatives they gave her yesterday. Morphine is supposed to be out of your system quickly, but the other medication is not. So, part of her fatigue I attribute to that. Leah also has low counts right now, so that, too may make her more listless. She did have a morning nap, but no matter how tired she is, she always wants to attend the activities and go to the library. We did manage to make it to the library with Beth Ann and her daughter this afternoon and also attended the afternoon activity-baking a cake. The highlight of our day was the evening activity-the Christmas party with a visit from Santa. Leah even had her picture taken with him and received two presents. We decorated cookies and did an art project as well. Tyler, one of the Dance Marathon college volunteers, visited Leah after this and painted a picture with her. The two finished their painting project by painting their faces. Dr. DePaola will think she has a bad case of stripes tomorrow.

I am happy to report that the doctors have decided to indefinitely postpone/cancel the CT scan. I don't want them to overlook something they feel is critical to her health, yet Leah has been feverless (knock on wood) for almost 40 hours now. We were originally scheduled for a CT scan with general anesthesia, but lucked out when the 3rd floor had some type of flooding problem and the water had to be shut off. Apparently this rerouted some different procedures and made it impossible for us to have a CT scan today. Dr. DePaola has indicated he would like to send us home. We would like to be home. However, we also do not want to be back here right away, either. Thursday is our clinic visit day when she receives her Vincristine and has blood counts drawn. I have already told them that if they release us on Wed., I would rather just stay until Thursday since her port is already accessed and we would be driving back right away the next morning. They have told us they can do her chemotherapy on Wed. if we get to go home that day.

Leah did have one traumatic time in her day. They must reaccess her port every seven days to help prevent infection. That entails taking the one needle out and then putting Emla cream on it to numb the site for an hour and then reaccessing. When we arrived last week this was not a good experience since it took them four different tries to achieve success. Of course Leah remembered this and even though she is little is listening in on every conversation. She worried and mentioned having her port re-done several times today. Overall, though, she did a good job with the procedures and the Child Life gal, Emily, was very helpful in distracting her. She brought Leah two nice books for her hard work. And, the nurses and Emily made sure that her favorite evening nurse assistant, Jeremy, could come up from a different floor where he was working to help her as well. I felt very happy that they only had to attempt to access her port once and it worked.

I am planning on working on Wednesday. That is Chris' day off, so he will be driving here tomorrow with Chloe. I will stay until it is almost Chloe's bedtime and then driving home with her. It will be strange for me to be away from Leah, but I have been preparing her for this for several days. It will be good for me to get a break, and also for Chris to be able to spend time here, too. He knows the staff here, as well, and Leah trusts many of the nurses she is getting to know. I really cannot imagine being back at work and pretending life is normal. Things have been so abnormal since the day she was diagnosed, that it almost feels as though time has stopped. I am excited to see the kids at school again, but it finally dawned on me today that I would need to do lesson plans!

We are trying to think positive thoughts to keep her fever away, and pray for her chemotherapy to work as well. Every message, letter, email and phone call we receive is greatly appreciated.

Sunday, December 18, 2005

December 18, 2005

Happy Birthday, Aunt Suzanne! We were lucky enough to have Suz stay with us last night, even though she probably did not have a very exciting birthday. Leah's present to her was ten hard pinches on her face. So much for the pinch to grow an inch. We also gave her many birthday spankings.

Our day began quite nicely. Leah had a fever this morning, but aside from that, was in a good mood and had a fun time with Suzanne and James. Early on in the morning we were informed that she would be having a CT scan and could not eat or drink. While this was not good news, we managed to keep Leah busy enough that she did not complain about this. Suzanne ran some errands and let Leah give James a meal she had bought for him at his favorite restaurant. Usually when James is summoned by Leah because she has something for him it has to do with a bodily function. Imagine his surprise when he found his favorite meal waiting for him. We went to the library and Leah was quite lively. Around 2:30 Suzanne left to go back to Des Moines, and unfortunately our day took a turn for the worse.

Leah's first CT scan does not bring back pleasant memories. She had a hard time with her sedation then and was very scared. Today we had to repeat many of the same events. The barium drink left her crying. She had to get an IV. All of this I found difficult to watch. It is hard to see her suffer and in pain. We had completed the barium drink and had started taking her oral sedation medicine when she began vomiting. She continued vomiting for a bit, and did not manage to keep any of the sedation medication down. Plan B was to put in her IV and then give her a sedative in her IV when we arrived for the CT. This was done, and while she became groggier, it did not sedate her. A second dose was given and Leah became more agitated. The resident was then called and morphine was administered. This, too, had no effect. And finally a third dose of the IV sedative was given without any success in helping Leah go to sleep. They ended up not performing the CT scan at all, and we are perhaps needing to do this tomorrow under general antesthesia. While Leah did not fall asleep with these sedatives, she did become agitated and quite loopy. We have noticed that each time Leah is sedated she fixates on things. This time she fixated on her IV she wanted removed. This fixation where she cries and yells about this one thing can go on for hours. The good thing is that we know this is the medication that is making her behave this way. She will not remember these things in the morning. The bad thing is that it is quite wearing and hard to distract her. Tonight she is just falling asleep at 10:30 despite all of the sedatives she has received. At this point in time I am much calmer than I was while this was playing out. Watching Leah be put through all these things, and then not to have them work has been very stressful.

The good news is that she has been feverless since this morning. However, since she has had so many fevers we may still have to do the CT scan. I understand the need to err on the side of caution, yet wish they would be satisfied with how she feels tomorrow when they see her. Dr. DiPaola will see us tomorrow, and I have many questions for him about what their plans are for Leah's treatment.

Leah received her second GCSF shot tonight. She did not like it, but I don't think it hurt her as badly as the first one did. I made sure to ask about a numbing cream to give her before the shot is administered. I have heard from many parents the need to be her advocate. This is certainly true. If there are things I can do to make procedures less painful and traumatic, then I will certainly try to do them for her. Yesterday her counts were under 400. She must receive shots until her counts are above 10,000. Today her counts are at 6,000. A good recovery in a day's time.

I am hoping to get some much needed rest tonight. Tomorrow may be another day full of medical procedures. The nurse has warned me that she will need her IV flushed with saline in the morning so that it is still usable, and she will need to have the needle on her port changed as well tomorrow, another routine that occurs every 7 days.

We are continuing to be in need of many prayers.

Saturday, December 17, 2005

December 17, 2005

Today went by quickly for us. Grandma Kathy and Grandpa Daryl brought Chloe down for a vist and stayed much of the day. It was great to see all of them; Leah seemed to enjoy it much of the time (she had her moments, but if I were her, I would probably have plenty of moments, too).

We finally felt as though we had some good sleep last night, even though Leah's temperature continues to spike during the night. We are never in a rush to wake up and today was no exception. Normally the doctors do rounds earlier on the weekends, but we did not see Dr. Rahdi until after 11. My parents were able to meet him and he spent some time trying to make friends with Leah. His daughter is 4, too, so he knows all about Dora and "Swiper no swiping." Dr. Rahdi visited with us about a variety of things. A CBC was taken this morning which showed us her total blood counts again. Normally when blood labs are drawn it is common practice to skip the sixth day of a patient's hospitalization for blood draws. This was Leah's sixth day here, but because her counts are dropping and it is important to know if she has bottomed out, they drew another set of labs to determine this. The results showed her to be anemic yet again with a hemoglobin level of 7.8. They transfuse at 8.0, so this afternoon Leah had a blood transfusion. Her neutrophyls are also 416. If that number goes below 500 we begin administering GCSF, a shot to stimulate her counts to rise more quickly. This is something I have been dreading. I hate needles, pain and blood. But, there is no choice, so I must learn quickly. The one nice thing about being in the hospital when these shots start is that we are not trying to figure out what to do at home all by ourselves. Tonight the nurse gave her the shot, and later I am going to give one to her to practice. She assures me this is fine and thinks it will be easier for me to give to Leah if I am not trying it for the first time on her. Leah was not excited about the shot, of course, but she is a tough cookie. I am sure when she realizes these will be a daily occurence there will be more resistance. Dr. Rahdi has also mentioned the possibility of a CT scan on Monday. The fevers that persist seem to be without a cause because all of her blood cultures do not grow anything. From what we can gather, the fevers very likely could be tumor related. Yet, in order to rule everything out, they would do a CT scan to determine she doe not have a fungal infection that was not being picked up by a blood test. I have bad memories of her last CT scan that was performed on Thanksgiving. However, this test is not painful or invasive, and hopefully after treating her for a while they are aware of what dosage of sedation she can have and she would be unconscious this time, unlike before.

My parents arrived with Chloe around 11:00 and visited with us, brought goodies for home, and met many of the people we see on a daily basis. Leah wanted to go to the library with them, so we took the girls up in a wagon they have here, and picked out new books and movies. Chloe, my dad, and I went to the mall while my mom stayed with Leah for a bit. It was great to get outside and into the real world, although Coral Ridge Mall the weekend before Christmas was a poor choice. There were just way too many people. I did not even attempt the things on the list because the lines were just too long. I did get Leah a shirt at Old Navy - before I left she had requested a mom shirt. (She has several about grandma and grandpa). This one says "My Mommy is the Prettiest." :)

By the time we returned to the hospital Suzanne had arrived from Des Moines. She is staying with us tonight. I have reserved for her the chair that folds out into a bed and feels as though you are sleeping in a coffin (that is Chris' analogy. I wonder how he came up with that?!). She has gone to purchase all the things on my list that I never got while I was shopping. Tomorrow is her birthday and Leah plans to give her lots of spankings just like they do at preschool on birthdays.

Once again, we are very fortunate to be here with this staff of nurses and doctors. James, our nursing assistant, stayed with Leah a great deal today during her blood transfusion and prior to that had her giggling away this morning by allowing Leah to spank him repeatedly. Chloe got in on this act, too, and while a part of me could not condone them beating up on poor, defenseless James, it was very good to see them laughing and playing. I suppose when James shows up black and blue tomorrow I may feel much worse. Leah also bonded with Anuhba, another resident. She spent over an hour of time sitting with Leah in her bed, talking with her and reading to her. She is so kind and caring to Leah, and after I discovered Anuhba is a reader, I got my chance to give book recommendations-there was no escaping for her then. Jeremy, another nursing assistant that works in the evenings, worked last night and confessed that he tries to have Leah for a patient each night he works. It is nice to have these people who feel she is special and treat her with such care and kindness, even when she is not always happy to see them. Leah also found great humor in Jeremy last night after he accidentally spilled her urine sample all over the bathroom floor and had to mop it up himself. Despite her fever and the fact that she did not feel well, she did perk up enough to laugh about that. We have to find humor in small things while we are here.

Again, please continue to pray for Leah, for her chemotherapy to be effective, for her strength of spirit as she faces many frightening procedures, and for her to feel well enough to return home and enjoy time with her family and friends.

Friday, December 16, 2005

December 16, 2005

Hospitalitis has officially set in. We have spent much of the day in the room. Leah spiked a fever of 104 last night. That is the highest it has been so far. It does come down with Tylenol, but they continue to take blood cultures to sample and monitor things very closely. She also had a fever much of today and looks like she does not feel well. We have heard that this can happen as her blood counts continue their downward trend. Her counts have not even bottomed out yet. They are expecting that to happen this weekend or by Monday. Even if her fever does not return (which is unlikely) they will not release us when her counts are their lowest. They will wait until they begin to move upward. It seems we will need to get used to a lack of control about many aspects of our lives.

Tomorrow I am looking forward to a visit from my parents and Chloe. Leah is not in a great mood to enjoy visitors, but I am looking forward to leaving the hospital -even if it is for a short time- and having Grandma and Grandpa take over.

This day has been unremarkable and full of our usual visitors of doctors and nurses. Our room provides the perfect vantage point to watch everyone who enters this unit so we are able to keep track of the goings on here without exerting much effort. Dr. DePaola stopped by to say a quick hello as did Mary in the Middle and Jane, too. We do now have our calendar of Leah's treatments which are subject to change depending on Leah's blood counts. As of now the plan is for her second treatment when we are admitted to the unit to begin on December 28 and the third treatment on January 17. As we are finding out quickly these dates are tentative and may or may not change.

We are praying to be home soon and for all fevers to stay away. Right now it seems as though we have not been home in a very long time.

Thursday, December 15, 2005

December 15, 2005

Another day in Iowa City. We had hopes that we would be at home, or definitely on our way to being discharged, but during the night Leah spiked a fever above 101. Because of that we are here for at least three more days. And, just an hour ago, her fever again reached 101. I am wondering when they will decide we can go home. While I would like to be home, I am glad we are here to receive the medical care Leah needs.

Immediately upon our arrival on Monday night Leah was started on an antibiotic. This is precautionary and always done for patients with fevers. The antibiotic is a general one that will eliminate many different types of infections. Since she spiked a fever last night they started a second antibiotic today. This one they referred to as a "big gun" to try and get rid of any type of bacterial infection if one exists. Several times during the day I noticed Leah's forehead was rather red. When I tried to get a better look she would push my hands away. She is quite sensitive about anyone touching her now. At first I thought it was because she had rubbed her head on my scratchy sweater, or at one point she had bumped her head on the elevator wall. As she was falling asleep I finally got a closer look and noticed that not only is her forehead red, but throughout her scalp she is quite red. The nurse noticed it, too, and told me this is one reaction to the new antibiotic. It does not mean she is allergic, but it does mean that instead of administering it over 90 minutes, they will slow the medicine down and administer it over 2 hours time. If this still does not eliminate the redness, they will give her Benadryl to counteract the reaction.

We were very excited to have Kristi as our nurse last night. However, when Kristi came to check her blood pressure, pulse and temperature at midnight, she also needed to draw blood because she had a fever. Leah awoke to Kristi standing over her with a syringe and wearing a mask. She was a bit hard to calm down after that. And, to add to the trauma, her port was not cooperating and Kristi was not able to get blood to flush back in it. This meant that after trying several different times, a medicine that would be injected into her port was ordered from the pharmacy. Apparently there can be clots that exist at the site of the port, and this medicine would get rid of it. While we waited for the medicine to arrive (Leah went back to sleep, but I was too keyed up at that point) I did manage to read much of a book. Once the medicine was ready Kristi decided to try it one more time without administering the new medicine, and it magically worked. By this point neither of us were going to get a good night's sleep, and today we were both rather tired.

This morning Leah attended activity time which was an art project. And this afternoon, The Child Life team took Leah shopping at their Christmas store so she could pick out Christmas presents for her family. She enjoyed this a lot and also liked wrapping them. She was excited that she had a secret about what was in each gift, but as soon as we returned to our room, she had me open mine. This afternoon they had karaoke, which we skipped (even though I really wanted to go), and we also missed Bingo tonight. The biggest problem with going places today has been that her IV pole continues to beep at us every time we get somewhere far away. Her battery pack did not have much juice, so after this happened a few times and we had to return quickly to our room (picture me carrying Leah and attempting to push this huge IV pole on wheels around the hospital as it is beeping incessantly) to get someone to shut it off. Needless to say, we had a 5 minute visit to the library this morning and only managed to pick out videos. We returned this afternoon and made up for our inability to check out books from the morning. We had to have an assistant help us down with our books which took up much of a little shopping cart that is now parked outside our room.

Leah is also making friends. One of the Dance Marathon volunteers, Liz, talked with Leah at the pizza party last night, and told her she would come and color with her today. Leah was very happy to have Liz show up this afternoon and they spent an hour coloring together.

And, the big news of the day is that Leah's AFP counts were taken. AFP (alphafetoprotein) is a number that is very important to us. When she was first diagnosed on Thanksgiving the doctors took one more blood sample before they sent us home and tested the AFP level. That was the first and biggest indicator that Leah's tumor is a hepatoblastoma. A normal AFP range is from 0-8.9. On Thanksgiving Leah's AFP was in the 652,000 range. After chemotherapy last week, her number is now in the 370,000 range. The doctors are fairly happy with this. It certainly was the first thing mentioned to us by everyone associated with her case. This is a good indicator that the chemotherapy is working. Her abdomen is still large. I keep looking at it hoping that it appears smaller. I have heard from different nurses here and others who have experience in dealing with cancer, that tumors do not shrink overnight. It may take a month or two for it to shrink noticeably. What is also difficult is that now Leah complains about her stomach hurting. It is hard for us to determine how much of this is actual pain and how much is mental/psychological from all the poking and prodding that is going on. I do not doubt there is pressure, but it is interesting to see her walk normally when we do something like go to the library, and then grimace in pain as we walk down the hallway here. She truly does move more slowly, so I am especially anxious for the tumor to shrink because I would like to see a difference in her mobility and activity level.

Before I end, I must mention the resident Nancy. She has been putting in a great deal of effort to get Leah to like her-or at least not scream at her. I enjoy giving her a hard time about this, and Kristi especially had to rub it in today. The first thing out of her mouth when Nancy came on duty was the fact that Leah read Kristi a story and gave her a hug goodnight. Nancy is growing on Leah, but she is a long way from a hug yet, I think.

Chris was here for a bit this afternoon. He brought us clean clothes, food, and more books and magazines. Leah was very happy to see him and have him run errands for her for a while. He left around 8 so he could sleep at home tonight, get Chloe ready for daycare tomorrow and go to work himself. Since we don't know when we are going home, we may have someone bring Chloe down for a visit this weekend.

Wednesday, December 14, 2005

December 14, 2005

Leah and I have had a busy day in Iowa City. Rumor has it that the real world has received some snow, but since we have not been outside in a few days, and our window does not offer much of a view, we are happily oblivious. There are some positive aspects to hospital life.

While Leah's temperatures continue in the 99.2-99.8 range, this is not considered a fever by the standards here. She has yet to run a fever during this stay, and we are still questioning whether we will be going home tomorrow or waiting until Friday.

Dr. Rahdi and the resident Nancy and Dr. Sarvada visited this morning. Earlier Nancy had been telling Dr. Rahdi that she thought Leah was warming up to her since she had not screamed, "Get away now! Go away!" as she normally does. Dr. Rahdi replied that Leah had told him those things instead. The reason for this Mary in the Middle explained is that Leah is not wasting her time telling Nancy what she wants anymore, she is going right to the top. Leah was also pleasantly walking down the hall when we met Dr. Rahdi later in the morning. Upon seeing him she begins screaming and grabbing me to pick her up. Luckily he does have a sense of humor and assured Leah he would walk on the opposite side of the hall and hug the wall if he needed to.

While there is no love lost between Leah and the doctors at this time, tonight Kristi, her primary nurse is on duty. Leah smiled a lot when she saw her. She also did her best to entertain Kristi by writing on her face with crayons, and just being silly, in general. We are now waiting for Kristi to return so Leah can read her a bedtime story, Knuffle Bunny (one of our favorites from home).

Leah does have more energy. Her hemoglobin has risen to 9.2. They will check her blood again tomorrow. Since Thursday is a day we are normally scheduled to receive Vincristine on an outpatient basis, we will do this tomorrow from our room here. While she does have more energy, we are not getting a great deal of sleep. By the time she received blood last night it was 11 PM. After that was completed they checked her vitals. They do this every four hours. She also was up three different times to use the bathroom since she is receiving IV fluids. It is difficult to get a nap out of Leah, so we talked about this a great deal today. Her analysis was that we should put a video in and she would watch it with her eyes closed just like her dad watches football. I did finally get her to fall asleep, but had to wake her shortly after it started since we had to make a return trip to the library for more books and videos.

Tonight there was a pizza party for all the families with children here at the hospital. We enjoyed having a break from our hospital cafeteria food and doing something different. Tomorrow we are looking forward to music therapy, and perhaps a massage for me. We pray that her fever does not return and that the medicine and chemotherapy does what it needs to do.

Tuesday, December 13, 2005

December 13, 2005

Greetings from Iowa City (again). As I predicted, Leah has felt pretty good all day. We went to an activity in the morning where we used foam stickers to decorate door hangers. This afternoon we cut out Christmas pictures from Christmas cards and then used popsicle sticks to make a frame around them and added some glitter. It will surprise no one to hear we also visited the library twice today. The library is on the eighth floor, and while it is not large, it is a nice, cozy place with a good selection of books. Leah has a whole stash we have been going through. We had to do a little sweet talking to get to check out as many as we wanted. Apparently they are not used to the Leah Ristau method of book checking out. It is normal for us to come home with 25 new books after each visit to read together.

Right now Leah is receiving her first blood transfusion. The only number they are concerned with when they look at her blood counts is her hemoglobin. This was low after our blood draw yesterday at Covenant, where the results were 7.8. They did a blood work-up when we arrived here and it was 8.0. That is the borderline number for transfusing. After talking last night we decided we would visit with Dr. Rahdi about this again in the morning. We agreed this morning to take a blood count this afternoon to see where her hemoglobin was at that point. The expectation was that it would drop due largely to the fact that she is on IV fluids and this causes things to be more diluted. The results came in around 5:00 that her hemoglobin was 7.2. Although she does not act sick, she does act tired and we carried her around much of the day. While it is rare for there to be side effects due to the testing they do with the blood, the nurse's assistant must stay in the room for the first fifteen minutes after a transfusion begins to make sure there are no complications. This evening our nursing assistant is Jeremy. James Brown was here earlier in the day and we enjoyed teasing him a bit more, but his shift ends at 3:30. Jeremy is quite a nice guy, too. He read Leah a book earlier and they have struck a deal that if she drinks her juice he will return to read her a bedtime story.

Chris was here until a little after 5:00 today. We seem to have things under control here, and there is not much to do except sit around. Leah and I are quite capable of getting to her activity times and the library, although she was quite sad when he left. She has taken to calling him "Errand Boy" when she needs things and told me that we would need Errand Boy to do things tomorrow. He plans to work while he is home and will have to pick us up at some point when we know we are being released.

We would like to think that Thursday will be our day of release. However, we have heard them toss around the fact that if her blood counts plummet (which they should) we will not be released when they are at their lowest point. They will have to be going upward before they release us.

While we are not excited to be here, we are getting along well, and we continue to enjoy the other families in this unit. It is amazing that while cancer seems so rare in children, there are so many different people who have gone through something similar to our situation. Continue to send emails (, and and especially prayers.

Monday, December 12, 2005

December 12, 2005- Part II

I seem to have a knack for blogging too early, or perhaps my blogging is what stirs up trouble. Almost immediately after I finished my earlier post, I decided to take Leah's temperature. Her day was not going very well, and when I took her temp. this morning it was 99.9. They don't consider anything a fever until it is 100.1. If it is between 100.1 - 100.9 it needs to be that way 2 times in 24 hours and then we would need to come back to Iowa City. If it is 101 or above, we automatically come in to the hospital. So, I knew 99.9 was rather borderline, but Mary suggested Tylenol when I talked with her earlier, and Leah did perk up. By 5 or 6 tonight I knew she was warm, but procrastinated a bit with taking her temperature. When I did check it, it was 102 in one ear, so I checked again and it was 101.7 in the other ear. This means we threw some clothes in bags and headed back to Iowa City. Since we have done this a few times now it would seem we could be a bit more prepared. Chris claims he is in fine shape since he never unpacked anything from the last time we were here. I have the most random set of clothes ever. I did manage to pack everything crucial to Leah-her Dora pillow, Dora blanket, Dora pajamas, Dora pull-ups, and her puppy. As soon as she knew we were coming back to Iowa City she sobbed. I am sure she does not want to be here, but her lack of sleep and feeling sick have exacerbated this dread of returning.

I was feeling pretty good about remembering her Emla cream (it numbs the port site and I should administer it when we are halfway here), but after getting to Raymond realized I had forgotten the Tigoderm (probably spelled incorrectly. It is the sticky clear band-aid thing to keep her Emla and port site clean). So, we pulled into the St. Luke's Emergency parking lot when we got to Cedar Rapids and they gave us the supplies we needed before we continued our trip.

Once we arrived we saw several people we knew from our last visit. Clayton, the boy who showed Leah his port, is back again, too. We are also enjoying the resident, Nancy, since Leah seems to have a strong aversion to her. (At this point she is not a fan of anyone who works here). Our one stressful moment was when they had to stick Leah four times to access her port. We are learning, and now know that she needs to be sitting up when they access it so they have a better angle on things. Of course, everyone's port is different, so it is a bit of trial and error.

Even though Leah does not want to be here, she actually adjusted quite quickly and had Chris hook up the DVD player immediately. She watched Max and Ruby before falling asleep, and Chris is now at Wal-Mart getting a few things for tomorrow-instant oatmeal (Leah only eats Brown Sugar and Maple Syrup) and white grape juice.

By the time we got in to the hospital and got her coat off and had them take her temperature, her fever was gone. However, because she did have a fever we are now here for 72 hours. They took a blood sample and will culture it during that time. We are happy the fever is gone for now, and have heard several theories about why she may have had a fever in the first place. The theory we both like the best is that her tumor is causing it; the chemotherapy is causing her tumor to be inflamed right now, which means the chemo. is doing it's job. The inflammation is causing her tummy to be more tender and sore than normal (which it is). There were many more technical/medical terms that were tossed around, but that is the general idea.

So, tomorrow we expect Leah may feel just fine and we will have activities to take part in. Chris may leave by mid-afternoon and work until we get to come home on Thursday. Chloe is once again with Grandma Kathy. She has been quite flexible with our constant running (this could apply to both Grandma Kathy and Chloe, I guess). I will update you more on Leah's condition tomorrow, and hope we will be back in Denver by the weekend.

December 12, 2005

We have been home for a few days now, and would like to report that Leah is running around just like she normally does. This is not the case. She definitely acts sick much of the time. This is causing both parents a bit of stress, but when we call Iowa City they assure us that the medicine they have given her is quite strong, and may knock her down for a bit. I am not sure this makes it any easier to see her suffer, but we do know it is part of it. We have tried to do a few things that we normally enjoy-visiting Grandma Kathy and Grandpa Daryl and making cookies there, seeing GG (my grandma) at the nursing home.

Today was our first blood draw at Covenant Hospital in Waterloo. This will be a part of our weekly routine for the next six months. Leah was concerned immediately that we would have to stay, but I assured her that it was a five minute job and we could go. And, it was. Mondays will be her day to get her finger poked and blood drawn. Those results get sent to Iowa City and they then call us with the results. When Mary S. from Iowa City (she's Mary in the Middle) gave me her results, she was pleased with all the numbers. The white blood cells, neutrophyls, and platelets are still in the normal range. Her hemoglobin is low, however. The normal range is 10-12 and hers is 7.8. This means that she is anemic and acts droopy and appears pale. While some kids operate fine at this number, Leah definitely does not. So, tomorrow we get to trek back to Iowa City and get our first transfusion. This is all rather depressing, because since we are starting transfusions so early in the game, we worry this will become a weekly event. Yet, we have to take all of this one day at a time, and if this is what Leah needs, we must do it. I am sure she will be upset again tomorrow once we are there and she realizes they will be doing more poking and prodding. The other thing Mary reminded me when I spoke to her, is that while these numbers are quite good, it means her blood counts have not plummeted yet. They should continue to go down throughout this week yet. That is another reason to receive a transfusion tomorrow. Since we know that Leah is already at 7.8 and she will sink lower, waiting until Thursday when we visit Iowa City would not be a good plan.

As I mentioned before, Leah is only taking little bits of information in at a time. We have talked about various aspects of her treatment with her, but since she is four it is never a long conversation or in depth. Yesterday it finally hit her that she will be losing her hair. We both shed a few tears over this. Of course I know it will grow back, but baldness will be a very visible reminder of what is happening to her. Considering she hates having her hair washed or brushed, one would think she would not mind the loss of it so much.

Today Chris went back to work and I had a meeting with Human Resources at the Waterloo School District. While my time will not be paid, they are being quite generous in giving me the days that I need, and at a moment's notice if needed. It is good to have some of that sorted out as well, and I am glad that Chris was able to be away for a bit and think of other things.

The phone calls have slowed down a bit, but we enjoy the cards that we are going through (and not getting through as quickly as we would like) and the emails. And we continue to hear of more people and churches that are praying for Leah every day. Please continue to pray for Leah and her health, as well as for her to adjust to the aspects of treatment she faces.

Friday, December 09, 2005

December 9, 2005

We have been home for a day and our house looks it. There are still many things for us to sort through, and as soon as I have one thing put away I discover Chloe has made three new messes.

Leah was up only once during the night last night. She has continued to express that she is soooo tired. While this concerns me, her blood counts were fine yesterday when we left Iowa City, and she was tired there, too. She did vomit this morning two different times. Jane did stress this to Chris and me during her teaching, but for some reason I was so impressed that she had not thrown up initially while receiving the chemotherapy, I did not think she would later. Luckily she was done with this by mid-morning, and slept a great deal during this span of time. She is very droopy, but this morning after I found Chloe standing on top of her dresser, and then found her playing in the toilet, Leah did tell me, "Mom, she is so fustratin'." Those kind of comments are the things we usually get out of her.

I did talk to a nurse in Iowa City about her vomiting since at that point she had just had her medicine and I was not sure if I should administer it again, or give a third anti-nausea drug. He agreed that chemotherapy can totally wipe people out for a while, and that she should feel better within a few more days.

Later this afternoon Leah insisted that we visit Grandma Kathy and Grandpa Daryl. I had my doubts because she was lethargic at best, but she enjoyed being there for a while, and finally ate something-pepperoni pizza-while she was there.

I am not enjoying administering medicine to her at all and Leah is not enjoying taking it. This morning she did take her anti-nausea medicines after she threw up, and then we did swab her mouth with Nystatin three times. We have also been watching when she goes to the bathroom. Urine output is important because these drugs have the potential to damage the kidneys, so it is critical that she be quite hydrated. Vincristine also causes constipation, so to counteract that we have been administering Miralax. This is luckily enough a tasteless powder that we mix in her juice. While in the hospital she went two days without having a bowel movement, so we were encouraged to increase the Miralax dosage to once in the morning and once at night. After today and her four trips to the bathroom, we have to adjust our Miralax dosage to make sure she is not going too often.

While we are happy to be home, I am finding it much harder to be here than at the hospital. The hospital is a very busy place with many people to visit with and ways to keep the mind occupied. I have a little too much thinking time here at home. The other perk of the hospital was the feeling that by being there we were doing something. While her recovery time is quite important, the lack of daily contact with doctors and nurses makes it more difficult to feel as though we are making progress.

Please continue to pray that Leah can continue to remain healthy so we do not have to return to Iowa City before we are scheduled to, that her spirits and energy return, and that the chemotherapy works effectively for her.

Thursday, December 08, 2005

December 8, 2005

Finally I am able to report on Leah's progress from our home. It feels good to be back. Chloe was quite excited to see us, and gave us all lots of hugs.

We did not arrive back in Denver until around 5 PM. Our trip back from Iowa City took much longer than normal due to the snowy roads. We counted 43 cars in the ditch, and after our trip down to Iowa City last Tuesday, did not try to travel too quickly.

Our morning consisted of yet another chemotherapy lesson. This time it was more like a quiz. There are just so many things to remember that I must admit I am a bit nervous being home. Now I have to be the one to know what is going on. We also got a lesson in administering shots since we will have to do this as things progress. We saw the doctors for the last time, as well as several other people that have been checking on us regularly. Leah got a flu shot she was none too happy about, and we finally gave her a bath and hair wash. James, who brushed the big snarls out yesterday, got the honors of doing so again today. Leah has really bonded with him and while we learned how to give shots, she got to go with James and hang out.

Packing all our things took some effort; our things seem to have multiplied. Even though we were discharged around noon, by the time we packed, took care of last minute details, picked up Leah's medicine, and said our goodbyes, it was around 2:00.

Now that we are home we have so many things to go through, too. Our luggage is slowly being sorted as are Leah's gifts, and we are also working on getting through our mail. The attention is a bit overwhelming, yet we feel support from so many people. I must admit, though, it is strange being home. Our lives have changed completely in just the past few weeks, and it seems odd to try and carry on as though things are normal. Jane at the hospital has encouraged us to try and do so. And, as long as Leah's blood counts remain up, we can be normal-or close to it. Leah seems tired to me, and very crabby and clingy. I am sure she is emotionally overwhelmed, and scared, and confused. And, she has had both of her parents at her beck and call for quite a while now. She really wants to go to daycare tomorrow, and barring any major infection, I may take her for a while.

I am hoping for Leah to return to her happy self. I am also hoping that we have many smooth days without any medical crisis arising. And, of course, I am hoping that the chemotherapy begins to work and Leah is returned to health.

Wednesday, December 07, 2005

December 7, 2005

The days seem to go quickly here. If anyone would have told me that it was possible to pass time quickly at a hospital I would not have believed it could be true. I am attributing this new attitude to the fact that I have not been outside the hospital since last Wednesday when we arrived at 5:45 AM.

We do sleep a little later than we normally would, but since we are getting up many times each night to have vitals checked or go to the bathroom, the extra sleep is needed. By the time we shower and think about breakfast, the many visitors who need to see Leah and poke and prod her start arriving. This goes on til almost lunchtime. The afternoons have been filled with activities, visitors, naptime, and finally, supper and then an evening activity.

Today Chris and I got our second installment of chemotherapy education. Again, this seems like too much information. In addition to the chemotherapy drugs we are learning about, there are many medications Leah has to take to reduce side effects of chemotherapy. One of them is called bactrum. As I mentioned last night, Leah's own bacteria will be her biggest enemy, and this drug will help supress the growth of bacteria in the body. Another drug she will take is called Nystatin. Leah has some previous experience with this type of medication because of the thrush she had as an infant. With Nystatin the goal is to administer this orally (I get to swab her mouth everywhere) three times each day to prevent mouth sores. Mouth sores can result from chemotherapy, and anytime this type of sore exists, there is another source of potential infection. Another medication she will take, Zoforan, is an anti-nausea medication to be administered for the 3 days following chemotherapy. The last medication she will need to take G-CSF will be used if she has low blood counts as a method of boosting these counts. This is administered as an injection. Anyone who knows me, is already wondering how in the world I am going to manage to give anyone a shot. I was never meant to be a nurse!

This morning Leah received her last two chemotherapy drugs in this cycle: Vincristine and 5FU. Neither seem extremely remarkable to us at this point. The side effects are almost identical to Cisplatin, yet they are not considered to be the heavy hitting drug that Cisplatin is. In fact, Vincristine will be administered each Thursday at the clinic here in Iowa City to Leah.

Right now they plan on discharging us tomorrow. Leah is very excited to go home. She gets rather upset when she sees other patients leave and mentions her own house. She has adjusted to hospital life as well as one could hope. Today she finally had a bonding moment with her nurse, Kristi. While Chris and I were learning about her medications and side effects, Kristi took her to read books, and James the nursing assistant, decided to brush her hair. I wrote last night how Leah's hair looked rather ratty. That is a complete understatement. Everyone who looked at it feared we might need to hack much of it out. James worked wonders on her and she is starting to resemble the old Leah we know.

Our activities today consisted of going to the salon for a manicure and making cowpies this evening for cowboy night.

Besides enjoying being home, I will be happy when Leah is no longer hooked up to her pole with all the wires and tubing. In the past two days I have tripped over it twice. Yesterday I pulled the needle out and her whole port had to be reaccessed. Today I did something similar while we were out walking and the needle pulled out partially. I feel terrible when this happens and Leah is none too pleased with the nurses poking on her to correct things.

We continue to receive many emails and phone calls. Each day Chris and I remark to each other on the number of people we have reconnected with. While we certainly wish we had happier circumstances in which to visit with everyone, we do appreciate everyone who has reached out. We are also encouraged by the number of people who tell us that they pray for Leah each day and for all the churches both locally and throughout the country (and a few overseas) who pray for her, too.

Tomorrow night I hope to post this blog from our own home!

Leah's Address

We have had requests for Leah's mailing address.
It is: Leah Ristau
PO Box 525, 110 S. State Street
Denver, Iowa 50622

Tuesday, December 06, 2005

December 6, 2005

Leah had a great day! We were expecting the worst since she began chemotherapy last night at 11 p.m., but the nausea we anticipated has not appeared so far. The first drug she has taken as part of her protocol is called Cisplatin. It is quite high-powered. The nurse who administered her drugs when they began had to wear a gown as part of the safety precautions. Leah had to get up at 11, 1, 3, 5 and 7 to go to the bathroom. It is important for her to empty her bladder, but she was not happy with having her sleep disturbed every two hours. So, while she is not nauseous today, she is crabby, and quite tired. She has managed to avoid a nap all day long.

Chris and I visited with Jane who does the chemotherapy education. We know more about red blood cells, white blood cells, platelets and hemoglobin than we ever wanted to. And, we still have more to learn. Jane's job is to teach us about the many things that may happen while we are away from the hospital and to prepare us for every bad thing you can imagine. She told us she wants to scare us and get our attention, and she certainly did. Right now Leah went into chemo. with her blood counts looking very good-impressive numbers when compared with where they will end up. The only number that is already rather low is her hemoglobin level. They would like to see this number around 12 and hers is around 9. This means she is already a little anemic. As we look at information about hepatoblastoma, that is a characteristic of this type of cancer. This number will be watched closely to see if she will need a blood transfusion of some kind.

While many of you may already know this, the idea of chemotherapy is to kill the bad cells in her body. The cancer cells in her body are the fastest growing, and so they will be the most affected, yet, the good cells will be affected, too. Hair loss is almost a certainty since all three drugs she will eventually be using cause this. And while we will be concerned with colds and othe viruses, Jane was very adamant that Leah's worst enemy will be her own body. The bugs that we naturally carry around on us and the bacteria we produce will be much more harmful to her than viruses she may be exposed to. As a way to try and prepare for this Leah will begin taking an antibiotic, bactrum, to try and suppress some of the body's natural bacteria. She will also begin taking Nystatin to try and eliminate mouth sores since the open sore is another way to increase infection. Another drug, Mylax, is being added to her juice so that she does not become constipated since this is yet another side effect of a medication she will begin tomorrow. In case you were wondering, Chris and I will both have to review our notes quite carefully tonight in case there is a quiz over all of this tomorrow. We are on information overload.

Leah had more visitors today: Pastor Feldt, our neighbor Che (who got in on some music therapy and humored us by playing some instruments with us) and Jodi. Leah enjoyed the activities from yesterday so much that today we went to make a beaded bracelet. She liked this, too. Kristi, our nurse, is back after three days off, but because this is a teaching hospital we had Teresa help us today since many nurses will have to learn from Leah's chemotherapy protocol. Leah actually requested to see Kristi-and even smiled for her.

It appears that Leah is too tired for us to take care of her hair-do. We have not done a thing with it in almost a week. If her babysitter, Karen, could see it she would just cringe. There may truly be no hope, and perhaps we should hope it all falls out overnight since I cannot imagine being very successful in combing through it.

Leah has fallen asleep very early now and has just drifted off as I type. Maybe Chris and I can take control of the remote control and watch the Hawks play UNI. We are still hoping to be released on Thursday, and spend some time at home.

Once again, our emails are:, and for those of you who do not want to post on our blog. We continue to look forward to all messages we receive and the many people -some we do not even know, or know well- who have extended themselves to support us, and pray for Leah.

Monday, December 05, 2005

December 5, 2005

Tonight we are having some technical trouble posting to the blog. We have been unable to access it from the hospital and my mom has also tried and not been able to access it from home. We hope when the site is back in working order people will remember to check in.

The big news of the day is that we are starting chemotherapy tonight. Currently Leah is receiving a lot of IV fluids for the four hours preceding her first chemo. treatment. They want to do this because one of the drugs she will be receiving affects kidney function and it will be important for her to empty her bladder every two hours. This is all monitored very closely. Dr. DePaola visited with us twice today. Again, we have been impressed by him the times we have dealt with him. He has stressed the road will be long and hard and it will be dramatic with many ups and downs. Leah's tumor has metastasized to her lungs, yet Dr. DePaola happily told us there were only two unremarkable spots. This is better than if they were remarkable. The hope is that chemotherapy will eliminate those entirely. The first drug she receives this evening around 9:00 is called Cisplatin. We can expect nausea within 2-6 hours, although they do administer anti-nausea drugs with the beginning of Cisplatin. If she still feels nauseous, they have other drugs to counteract this. All of this is very dependent on the individual.

Other highlights of our day include Leah building a gingerbread house with a volunteer and attending an art activity this evening. She is starting to like some of these activities that are offered and mentioned this evening that she wants to go back to them tomorrow. Of course we will see how she feels.

Tomorrow Chris and I meet with Jane to get a great deal of information and education about chemotherapy. We have heard she has remarkable knowledge and we will learn much over time.

Right now the plan is that we may go home on Thursday or Friday. We have heard that before, so I say that much of this is tentative and we must wait and see how Leah feels and if she has a fever. When we get home we will be lying low since her blood counts will be bottomed out and she will risk infection. While we would love visitors, and so would she, this may not be something we can do without risking her health for a few weeks.

While we will be very happy to go home, we are also very impressed with the care we are receiving here. Every person we have come in contact with has shown great care and compassion for our family.

As the time approaches for Leah to begin treatment I find myself getting a bit nervous. The fight is beginning. Since we first met Dr. Rahdi we have been telling Leah that she needs to say, "Bring it on!" when she sees him next. They are "bringing it on" and we pray for her tough, stubborn, strong willed personality to be an advantage to her now.

Sunday, December 04, 2005

December 4, 2005

The weekend is almost over. We have now been staying at the hospital for 5 days, and seem to be adjusting to a rather uneventful existence. Leah still has her fever. Today she is much livelier than she has been since Wednesday when she had surgery, so we feel that she may be recovering from whatever she has. Up until this morning her time consisted mostly of moaning, whining, watching videos, napping, and staring off in space. Today she has watched videos, but we even read some books and she is coloring now.

Last night we had a chest x-ray after I posted my blog. The nurses and residents we see were getting concerned about her fever, as were Chris and I. It is so discouraging to have her feeling like this already, and chemotherapy has not even started. The point of doing a chest x-ray was to make sure that a lung had not partially collapsed after surgery. Apparently this can happen sometimes and because Leah has not felt well enough to walk around and do some deep breathing, could have been one source of fever. The x-ray came back showing everything is normal-a positive thing, yet still gives no answer for her fever. A resident asked this morning if they could catheterize her for another urine culture, which Chris and I immediately vetoed. We were glad we did, and Dr. DePaola agreed with us later when we visited. He continues to be unalarmed about her fever and assures us she will feel better. He has also pointed out, though, that this will be a long road with many ups and downs, and this is one of many we will experience.

Today we had a few visitors. Doug and Amy stopped since they were in Tipton visiting Amy's parents. They brought us real food-McDonalds! Leah actually liked her lunch-chicken nuggies and fries. They also brought an assortment of food for us and things for Leah. The Maleceks and our neighbor, Esther, visited with us, and Leah was happy to have her triplets see her. Chris' aunt and uncle stopped by for a bit before they headed back to Wisconsin. My sister has come to spend a night with us, and her friend Graham also came to visit. Right now Chris, Suzanne and Graham are at The Vine eating supper. I must admit I am rather jealous, but Leah explained to me that I could not go because she really needed me here.

Although I find it hard to concentrate, I have managed to read a few books. Leah's favorite person to lay in bed with her happens to be me. (This is due to the fact that ever since she was little she has held my hair as a source of comfort -much like a security blanket). Since I am confined to bed it is either a Blues Clues video for entertainment or one of many books I brought with me.

I am hoping that tomorrow we will find out Leah's chemotherapy schedule and also that her fever will truly be gone.

Saturday, December 03, 2005

December 3, 2005

Saturday has been snowy, quiet and uneventful. Today is the first day we can say that we have had no visitors. Alone time is not all bad, either. Leah has watched many, many videos and after Chris hooked up our DVD player from home, some of them as well. Every time we think her fever is subsiding, perhaps for the last time, it returns. This is frustrating to us, since they have assured us that she should not be this sick when she receives chemotherapy unless she has an infection that we must return to the hospital for.

Our lone source of entertainment today has been our nurse's assistant. His name is James Brown (poor guy) who lives on Woodstock Avenue. He has quite a good sense of humor and likes nothing better than to pass time talking with us. Our nurse finally started looking for him in our room when she needed him to do work. Leah finds him entertaining and has even cracked a smile for him. James and Chris have developed a project for our hospital stay: they will work to take Chris' blood pressure without him fainting. They made two attempts at this today that had to be aborted before the cuff had inflated all the way.

We also met another doctor. Dr. DePaola is probably our favorite doctor here in just the few minutes we got to visit with him today. Leah liked him, too, and we are happy he is here this weekend and will be the attending doctor for December. We still see Dr. Rahdi as our primary doctor, and while I do believe that he is quite competent and even kind, feel more comfortable with Dr. DePaola immediately upon meeting him.

The hospital is operating much more slowly on the weekends, which is fine with us. Today there was not the parade of doctors and residents coming to poke on Leah like there were during the week. They did manage to take a 12 hour urine catch to determine her creatinine levels. This is to develop a baseline of what those levels are normally so that when she begins chemotherapy they can watch her kidney function closely. As with any medicine, chemotherapy has side effects, and kidney function is something they will want to be watching, as is her hearing.

The urine catch has meant that Leah has actually had to get up to go to the bathroom. She is not very excited about this, and it is impossible to tell if it is because she is in pain, or worried about hurting her abdominal incision, or a number of other aspects of being here, such as having a big cart with cords and wires we have to drag into the bathroom with us. Being up is good for her, and we were trying to convince her to go for a walk with us, but now that her fever is coming back, don't think that will be happening yet tonight.

Sunday will be another day, and hopefully one that ends her discomfort and fever. We pray for this as well as for God to help heal Leah and restore her to health.