Friday, March 31, 2006

March 31, 2006

We are still recovering and resting in PICU today. There has been talk since late Wednesday night after Leah's surgery of transferring us to her regular floor. However, we are happy to stay here since Leah is in pain and not needing the normal hustle and bustle she usually enjoys. Today has been much like yesterday. The many different doctors have rounded and examined her. We have had several short naps. They decided this morning to turn up the amount of medicine she is getting via her spinal catheter which has greatly reduced the morphine she gets through her port. In fact, she has not had a dose in that manner since 1 PM and has yet to ask for more. Yesterday she was asking for more medicine almost hourly. The drugs she is getting through her spinal catheter are making her more loopy and confused, but the nurses feel that perhaps she is finally caught up in her pain management and we can turn things down tomorrow. We still have many tubes that cannot be removed, but this afternoon she was able to have three different arterial IVs taken out. This has made her a bit more comfortable and it has been easier for her to move her arms around. She has run a low grade fever on and off which all the doctors feel is related to her surgery and not uncommon. She has watched The Brady Bunch while dozing on and off and had Aunt Suzanne read her several books. She seems to be crabbier and more demanding today which we also think must mean she feels a bit better because we are having to fight with her more. At one point she was quite insistent about having a sugar cookie which Dr. Lawrence vetoed. She is on a liquid diet right now and likes none of the items on the menu. Despite all our reasoning, cajoling and bribing she is holding out for some food she likes.

Please continue to pray for a speedy recovery without complications as well as the continued effectiveness of chemotherapy and surgery on her eventual remission.

Thursday, March 30, 2006

March 30, 2006

Today has been a long, but good day. At 10:30 last night since Leah was trying to communicate and was very awake they decided to remove her ventilator. She was happy with that and was then able to talk. I think one of the first things she said was that she wanted everything out (meaning the tubes, etc.). The NG tube that they inserted while at surgery seemed to really bother her the most of all things. There are definitely some pain issues as would be expected. She is able to tell us what hurts and they adjust her morphine as necessary. She still has a catheter that gives her a continuous morphine drip and then gets more in an IV every two hours. We have had many, many conversations during the night as well. She asked several times where she was, so I know she was still sedated/under anesthesia to some degree, but everyone was rather amazed by how aware she was and continues to be. She has said that her scar (incision)hurts her and I can only imagine. It definitely looks like it hurts. Dr. Lawrence has been to see her twice today and thinks she is doing well. She was very insistent this morning that she get some milk, but she is on a clear liquid diet right now and was not happy about having her request denied. Eventually she agreed to sip on some Sprite and has now been OKd to have milk. They did remove her NG tube this morning and that did make her happier although she has moved on to request many other things be removed. So far, she has had no luck with that. Her chest tube is still draining, but minimally. They feel it will be Sunday before that will be removed. Dr. Rahdi was also here this morning and thought she was doing well. He seemed happy with how surgery went and said that everyone in the clinic was very happy when they heard about her surgery. In addition to Dr. Rahdi and Dr. Lawrence, there are several other doctors that round as well as the Pain Management Team and ICU team. Our nurse told us how happy she is to have a responsive patient who can articulate what hurts and how she needs help. That seems rare for the PICU. There was talk of moving us to our normal unit today and out of PICU. Chris and I would rather stay here where they can watch her a bit more closely, but by tomorrow we are sure we will be kicked out. She really is doing quite well overall.

We hope her recovery continues to go so smoothly but also know that different things could occur that would slow us down. In addition we still have four more rounds of chemo and "then we'll see" what we may need to do from there. So, keep praying for Leah's continued healing and for her treatments to continue to be effective. They will check her AFP level again and that, too, is another critical number that we need to drop significantly.

For today, though, we are quite pleased with what has transpired and thank everyone for the prayers and emails, cards, and messages.

Wednesday, March 29, 2006

March 29, 2006 - Update #5- 8:10 PM

We have been busy this past hour and a half after day of waiting. Dr. Lawrence called at 5:10 to say they were closing and then eventually at 5:45 we heard that we should head to the family lounge in PICU where they would meet us. Around 6:30 we saw Leah and her entourage going down the hall to her room and Dr. Lawrence was just minutes behind to talk with us.

Overall he felt the surgery went well and that the results were positive. This sounds like great, great news to us. (The oncologists will still not show much optimism, we know, because even one microscopic cancer cell the surgeons cannot see could exist, but we have overcome one hurdle today). The entire right lobe of her liver was removed leaving the left lobe alone. Unlike her biopsy when they were unable to tell normal liver from tumor he said it was easily discernible where the tumor was. It was not encased in the liver, but rather was growing out from the liver. She also did not need blood during surgery, although there is some debat whether she will get some now to "catch up" because she did lose some blood. The lung portion of the surgery was very fast. In the lower lobe they thought they felt a nodule and removed it but it was quite small. They also removed the area where the other suspicious nodule was at one point, but did not see anything there. Everything will go to pathology anyway to get the final result. Chris and I have been in to see Leah and she was even awake enough to nod when I asked if she was owie. They have been monitoring her pain very carefully and given her some morphine to help with this. She does seem to know that we are there and the one resident was rather surprised that she was as awake as she was. Since then she has drifted off to sleep. They are also working on pulling her one tube out a bit since the routine chest x-ray showed it to be a bit deep and not providing the best ventilation. They may remove her ventilator yet tonight. There are people working on her/around her fairly constantly. No one seems to think there are concerns right now and she appears to be doing well. We hope the good news continues and thank you for the many prayers. Please keep praying as these next few days/weeks will be exhausting for us all.

March 29-Update #4-5:30 PM

The surgeons finished their work on her liver at 4:30 and began working on her lungs at that point. At 5:10 we received word that they were entirely done with surgery and would be closing. This procedure can take 20 min. or 2 hours just depending on what needs to be done. I certainly would not anticipate a short closing since this has been a major operation. Again, we thank you for your prayers and messages during the day. Continue to pray for Leah's recovery and an uneventful end to surgery as well as good news regarding the day's events.

March 29 - Update #3- 4:15 PM

One more update: We are still waiting in the family lounge. There have been a few more updates. Apparently the idea of "a couple more hours" is a thing of the past. At 4 PM they came to tell us that they would be done with the liver portion of the surgery within the hour. They have yet to do the lungs which could take "a couple more hours." It looks like the family lounge will close before surgery is done. This morning Dr. Lawrence did warn us that could happen, so we will go to PICU when the lounge closes and wait for word there. Leah will go straight there and bypass recovery altogether. They continue to say things are going well. Please pray for a successful resolution to surgery and continued good news and for Leah's continued strength.

March 29, 2006-Update #2-12:55 PM

Our day continues to be uneventful and we are happy about that. We have had two more updates and both have been that surgery is going well. The people who update the waiting families seem almost apologetic that surgery is not over yet when they give us their report and last time told us that the OR told them it would be a couple more hours. Considering we are expecting longer than 2-3 more hours, we could potentially be in Pediatric Intensive Care before we anticipated, or perhaps they will continue to tell us "a couple more hours" during each report.
Please continue to pray for a successful surgery with complete resection of her tumor and a speedy and uneventful recovery.

March 29, 2006 -Update #1-10:30 AM

This morning we left Denver at 5 AM and made it to Iowa City in time to have Leah's port accessed on the 7th floor by one of her nurses, Stephanie. She was able to get into surgery a bit earlier than expected, but we still spent 5 minutes too long in the OR holding area. Leah was scared and crying and that is hard for any parent to see. I took her back to OR with the anesthesiologist and he did a good job of clearing out all the other people who were in the room to try and give her some space. They were able to quickly put her to sleep via her port tube. Chaplain Sheer was on hand to help us and pray with us right after this which both Chris and I were thankful for. We checked in to the family lounge then got some breakfast. Just before 10 as we were heading back to the waiting area we received a call that Dr. Lawrence thought the actual surgery would begin at 10:10 this morning. Her ventilator, catheter, pain relief catheter, IV (and perhaps a few other things) were all hooked up and she was doing well. It is only 10:30 now and it already feels like we have been waiting a long time.

We were able to confirm with the anesthesiologist that she will be sedated for at least 24 hours post surgery. In some ways that just highlights how major this surgery is, yet it is also a bit of a relief because she will have a lot of tubes hooked up and probably will not be receptive to this at all. The more time she can spend resting peacefully and mending will be helpful.

We have received messages from so many people who are praying for her quick recovery. Please continue to "pray without ceasing (1 Thes. 5:17)." We will continue to update our blog as the day progresses to keep everyone informed of the doctor's progress.

Tuesday, March 28, 2006

March 28, 2006

I am blogging earlier today than normal-and from home! We left around 9 this morning after packing haphazardly. We were too busy having a dancing party last night to pack, and by not packing it was easy to ignore these major days coming up. We arrived in Iowa City and the pediatric clinic where Tom helped us. Our meeting with the surgeons was at 11 and Dr. Lawrence came and went over many of the surgical procedures and concerns with us. He feels that the tumor is resectable and located in the right lobe of the liver. That would remove 50% of her liver, and they could take more if they need to by removing a portion of the left lobe. The primary concentration of the surgery is on the liver and he believes it will take 4-5 hours of time. The spots in the lung are kind of a tag-on item. They will try to go in through the diaphragm and remove those in that manner. If they are unable to see them that way they will use a scope. The third option if neither of those work is making another incision going in from the back. He agreed with the rough 9-hour surgery estimate. However, he highlighted that unlike ER or Gray's Anatomy there will not be earthshaking, dramatic events occurring each moment. Much of it will be boring and monotonous and time consuming. Merely preparing her for surgery once I leave the OR could take up to 2 hours. She will have plenty of tubes coming out of her-catheter, port tube, arterial IV, NG tube, ventilator that will all take time to insert as well. And, we should expect her to need blood during surgery especially since this involves the liver. The best news of the day was that we did not need an NG tube. I told Leah she should kiss Dr. Lawrence when he told us that. In fact the total bowel prep she has to do is taking her normal dose of Miralax (powder we dissolve in her milk that is tasteless) tonight. She can even eat until midnight. By the time Dr. Lawrence told us this Tom and Chris and I had already talked to Leah about getting the NG tube in and Tom was prepared to do it in the clinic. So, even though it is a small thing, we feel like we won the lottery! We were also elated when he told us that we were not staying in the hospital tonight and just showing up tomorrow morning for surgery. We were thrown for a bit of a loop by this news, but were happy to take this treat, too. So tomorrow morning we leave bright and early. She is now the second case of the day. We will report to surgery at 7:30 (her port will be accessed on 7th floor at 6:45) and her surgery will begin at approximately 9:00-9:30.

Our meeting with anesthesiology was unremarkable. Chris and I learned nothing new, but this is another hoop to jump through. By the time we got to leave it was 2 PM and we had not had lunch. We had a quick bite to eat at the mall per Leah's request and made it home just after 4. Tonight will be an early night and tomorrow an even earlier morning.

Please continue to pray, pray, pray for a successful surgery with no surprises and good results as well as a speedy recovery. This is another big step for us on this long road.

Monday, March 27, 2006

March 27, 2006

We are off tomorrow morning for an indefinite period of time. We will be meeting with the surgeons at 11 am tomorrow to have many questions answered in regards to Wednesday's surgery. Yes, we are very nervous about the next few days. Please pray that God will use his power to heal Leah and to comfort the rest of our family. We are confident that He will, but still ask for many powerful prayers.

Leah has felt great over the past few days. She has been full of tons of energy and spunk. I am confident that her body is strong enough to endure the next few days and weeks. Besides taking medication and her hair, nobody would know that she is ill. Thus, I hope in her 4 year old mind, she is thinking, "No big deal, just some surgery coming up this week!"

Though we have had many humorous days lately, the highlight had to be last night. It is a story of how brave and tough Leah is. Our neighbor Esther, her son, Che, and his friend, Jody, stopped by to see us. Esther (our neighbor) was here first for a glue picking party. Anyway, I told Che how impressive it was that Leah took her six medications so well. So after Leah impressed him with her medication taking ability, Che asked what the Potassium tasted like. I said I had never tried it. I then made up doses of 2 ml for us. Leah takes 6 ml twice a day. This was hardly a sacrifice on our part. We almost gagged taking 1/3 the amount Leah does! It is truly overwhelming to see how great she does with all the "little" things. Wouldn't life be a breeze if we could all condition ourselves to be as perservering as Leah? What a testament to the phrase, "Don't sweat the small stuff."

We will do our best to keep everyone posted over the next few days.



Saturday, March 25, 2006

March 25, 2006

Leah and I are up early on this Saturday morning. I have too many thoughts running through my head to want to lay in bed for long and as soon as she hears me get up she is up, too. We have already placed a phone call to Grandma Kathy for cookies that she must make immediately for the Princess.

Yesterday's trip to Iowa City was OK. We left at 10:30 in the morning for her 2:30 CT scan and then were checked in to the clinic. Leah now weighs 34.5 pounds. When we left 17 days ago she weighed 31, so I guess it would be normal I am noticing she looks bigger. The people there could tell right away. So, in the matter of just over 3 months she has made an 8 pound shift in her weight. When you are only3 feet tall that is a lot. Dr. Rahdi came to see us and talked with us just a bit about our expectations of the CT scan. The reason for Round 5 was to see if there was additional shrinkage. There was a chance there would be some, a chance there would be none and then since nothing is guaranteed, always a chance that something unexpected happened. That is how Chris and I have viewed things as well. Obviously we hoped for more shrinkage. The CT itself went fine although it is always scary for Leah when they put the mask on her to get her to sleep and always hard for me to help them do this. She also wakes up screaming and crying which usually goes on for about an hour or so after she is done. Since it was a 2:30 CT scan we did not expect any results on Friday. However, Dr. Rahdi did stop by and told us from his preliminary results he does not think there was any real shrinkage this round.

Of course, this is disappointing. We would have loved to hear how much more it has shrunk. Yet, it really does not change things because surgery is still going ahead on Wednesday and it will still be a major ordeal. Originally the tumor measured 11.5x12x9.5 cm. As of Feb. 23 it measured 7.7x7.1x6.6 cm. Those numbers are much smaller and when multiplied out the volumes went from 1311 ml to 328 ml. Again, a significant difference. I am not sure how much more they thought it would shrink this last time, but there was no reason not to try a fifth round since round 4 showed so much shrinkage. We have read/been told/heard that eventually tumors do stop shrinking (otherwise they could just do chemo. for everyone until the tumors disappeared) eventually, and as Dr. Rahdi said it is time to get her tumor out. And, trying to focus on some positive things, we are very grateful we did not hear some other news we were unprepared for- that the tumor had grown or something like that.

We will be down in Iowa City late Tuesday morning for a visit with the surgeons and then will be admitted for pre-op. things (NG tube and bowel prep). I already have many questions for them running through my mind that I will have written down for our meeting.

Leah did manage to stop her crying long enough to make a trip to Coral Ridge Mall where she wanted to do some shopping. Since the GAP is closed here she found a few things there she liked and then Chris and I grabbed some food since we, too, had not eaten all day. Leah tried to hold out for a salad at home but ended up eating few bites of our food before we got home in addition to her salad.

We hope that you will keep Leah in your prayers - especially for a successful surgery with 100% removal of her tumor as well as the spots in her lungs.

Wednesday, March 22, 2006

March 22, 2006

I have little news to report today. Leah has had two fun days at home. Yesterday I was home for the morning and we did some more laundry and not much else. Leah informed me this was very boring, but Grandma Karen came over in the afternoon with her dog, Molly, and she enjoyed that. Esther also came over at night for another glue picking party even though we aren't doing GCSF shots right now. And, Uncle Randy came over just before bedtime so the girls got to see him, too.

Today Leah was up at the crack of dawn. She is a very light sleeper and as soon as I am up she seems to wake up, too. Since I worked all day today that meant she was up at 6 AM. She talks from the moment she awakens and has much to report. She informed me that she would take care of getting Chloe ready for daycare today and wanted to know exactly how I do her pullups and underwear. Her fun activity of the day with Grandma was making Grandpa Arlyn's birthday cake and decorating it. When Grandma arrived at 7:30 this morning and Leah remembered that was on the agenda she wanted me to go on my merry way. They had a great day and Leah took a morning nap since she was up so early. However, Leah is quite stubborn and even though I had volunteered many times to make her little salad concoction ahead of time and put it in the refrigerator for her later in the day she did not want that. So instead she waited to eat anything until I got home and could make another one for her.

Chris is working tonight and Esther is over again for some glue picking. We have run out of guacamole chips and my special trip to Target to buy more was disappointing since they still appear to be out of them. I did buy the Doritos brand of guacamole chips, but this is not the correct kind so the rest of us will have to eat on those.

Two days until the CT scan. This continues to make me nervous. I keep looking at her stomach which still seems awfully round to me. It is soft, though, and it was not when she was diagnosed. She is also puffy everywhere so perhaps I should stop analyzing her abdomen every two seconds because as Leah pointed out when I gave her a little squeeze there, "Tina, that is annoying!"

Please pray for good scan results, a shrinking tumor, and skill and wisdom for the surgeons as they look at these scans and perform surgery. Please pray for Leah's continued good spirits and good health as we near the date of surgery. In the past few days we have received many emails, cards, and phone calls from people checking in and letting us know that they are praying for us. This continues to lift our spirits and give us strength to get through these next few days and weeks ahead.

Monday, March 20, 2006

March 20, 2006

Spring break is officially over and I went back to work this morning for a half day. Chris was home with the girls this morning since it was his day off. His brother, Randy, is visiting from Missoula, MT and both girls are excited to see him and do all the obnoxious things to him that Chris has been coaching them on.

Yesterday I took Leah for a blood draw at Covenant. The whole clinic was dark and we had to call for assistance from the main desk, but after that the nurse and the lab tech. came to poke her finger and we sat and waited for results. I am glad I took her on Sunday since we are definitely done with her GCSF shots for a while. Her white counts which were at .6 on Monday (3/13) were at 4.7 on Thurs. (3/16) and at 50.4 by yesterday. Considering we can stop the shots after they reach 10 we are glad we did not give her a shot again last night. Her hemoglobin is still at 10.9 and her platelets went up to 297, so I was happy with that, too. Iowa City called today with the results since they are not open on Sundays. They think her numbers look really good. I hope they stay that way since surgery is 9 days away. Since she is further and further out from her last chemo. treatment she should be doing well.

I am getting more nervous about yet another scan on Friday that we pray shows additional shrinkage. We have many big, big days coming up. Please continue to pray for Leah's tumor to shrink and her scan results to be good news. Please pray for a successful surgery and wisdom for the surgeons as they perform surgery on March 29.

We have been having fun, "normal" days here at home. Leah continues to attempt to potty train Chloe. This is not going so well since Leah seems to have her own ideas about how we should go about this that differ from my own. Right now she has sorted all the laundry and is busy throwing in different loads and folding A LOT of laundry. We had plenty of dirty clothes to wash, but when Leah decided it was laundry time she also changed her clothes in order to make a bit more laundry fun.

I work a half day tomorrow and all day on Wednesday. On Thursday we don't have to do a blood draw this time so I am taking Leah for a massage and manicure at Jiva Salon in Cedar Falls. This will probably be our last fun outing before surgery and one she will enjoy. I did take her to see the movie Curious George last Friday and she did well through the first hour of it. However, Leah does not like to sit still so we left before it was entirely done and I am the one who wanted to see the ending; she couldn't care less.

Tonight will be an early bed night- thank goodness. We have been having many late nights having glue parties with our neighbor Esther after we give the GCSF shots. Leah has discovered the joy of putting glue on your hand and spreading it out and then waiting for it to dry and picking it off. She has encouraged Esther and Chris and I to get involved in this activity as well. This brings back memories of elementary school, although I don't recall ever going to the extreme that Leah is. This also creates a big mess that we get to vacuum every day.

Leah's foods of choice this round of chemo. have changed yet again. Now we are eating spaghetti at every meal and guacamole chips for a snack. The other favorite is sliced turkey meat that I cut up into small pieces, shredded cheese, croutons and salad dressing. I figure there are some good calories in that meal.

Again, please continue to remember us in your prayers. These next few weeks will provide many answers as to how Leah's treatment will progress, and we pray that the surgeons can resect her tumor entirely and that they are able to successfully remove the two spots in her lung.

Thursday, March 16, 2006

March 16, 2006

Today Leah and I had another blood draw (finger poke) at Covenant. At first I thought that maybe we would not be able to get there since they forecast so much snow, but when I woke early this morning and saw no accumulation I knew we were out of luck. Leah handled this finger poke better than any other and talked right through it. Her platelets fall in the normal range, but are lower than normal, so we had to hold her finger for quite a while before getting to put a bandaid on them. It would seem that her platelets would begin to rise since her counts have bottomed out and are rising, but we shall see. Her other counts look good--we still have to do the GCSF shots, but her white counts went from .6 on Monday to 4.7 today. Her hemoglobin was 8.0 on Monday and 10.9 today. It is obvious she has much more energy. It was snowing big beautiful flakes on our way to Waterloo and back so when we got home we made some pumpkin bread and beef stew.

Leah also went through our mail and looked at all the new catalogs that came. She is a very, very good shopper. Finally as we are laying down for her nap and she is asking for outfit after outfit from the new Hannah Anderssen catalog, telling me how "honkin coot" things are on each page she turns to me and says, "these come in the mail, right?" I tell her that they do and she adds, "yeah, because if it comes in the mail we don't have to pay money for them." Sounds like a good idea to me.

Right now both she and Chloe are at Grandma Kathy and Grandpa Daryl's house. There was cookie baking to be done and Leah wanted to look at some of Grandma Kathy's digital photos on her computer. She was quite intent on this occurring tonight and I even had to call Grandma at school twice just to make sure and line things up.

I cannot believe that we are halfway through March- her scan is just over a week away and her surgery is 13 days from now. In some ways I want time to go quickly and in others I am enjoying this time we have when we can be "normal" (for us, anyway). We do not hear from people as much anymore, which is OK, but we do hope that you are continuing to pray for Leah--for a shrinking tumor and for a surgery that allows 100% resection of her tumor and for her spots in her lung to be removed as well---and for no other surprises to be revealed during surgery. We are thankful that she has felt well and continues to run around and giggle and act like herself this entire time. We are also thankful for the many people offering help in so many ways- meals that are delivered, cards that arrive in the mail to lift our spirits, and prayers that are offered up each and every day asking for Leah's healing. We certainly could not do this without this support. Please continue to remember us in your prayers as we move along on this journey.

Monday, March 13, 2006

March 13, 2006

Finally I get a chance to post! Chris and I are now fighting for blogging rights and he seems to be winning. Even though we have been home more, I seem to have less time than ever to blog. Part of the problem is our bedtime routine which forces me to the upstairs as soon as the girls go to bed. Eventually this will need to be corrected, along with about a million other things.

Today was a long, frustrating day. Leah and I went to Covenant this morning for a blood draw (port access). I knew her counts would be low so I decided to wait to find out what the results were before leaving. That way if we needed blood we could just remain there. Her hemoglobin was 8.0. In Iowa City they transfuse below 8.0, so our nurse Georgene, called Iowa City with the results and the request to please call right back. Two hours and a few phone calls later we still did not have the go-ahead to get blood. By this time Leah and I had gone to Target and then picked up Olive Garden for lunch to bring back. Finally when I talked to Mary in Iowa City it was obvious that somewhere along the line some communication broke down since I don't think she was aware how long we had been waiting for blood locally. I was rather insistent about her getting blood today instead of returning each day for an additional poke to check her levels. We finally had her blood transfusing by 1:15 and were gone a little after 3:30 this afternoon. We spent almost as much time getting blood at Covenant as we would have in Iowa City. However, we did get to leave and run errands and it is still MUCH more convenient than Iowa City. The nurses at Covenant, especially Georgene, who we see each time are soooo kind to Leah.

I am off of school this week for spring break although it does not feel very springy. Leah and I are still trying to find things to do. Part of the problem is that we are supposed to avoid germs since even a sniffle would cancel her surgery. Her counts are very low right now and we will start GCSF tonight and germs are everywhere. Unfortunately we have been hearing her complain about how bored she is for several days now. Even the suggestion of visiting someone is just not exciting enough. Leah is a wonderful shopper and that would be right up her alley, but we will probably have to wait to do some of those fun things.

As Chris mentioned he and I went to Bellevue on Friday. It was difficult to see the Reeds going through something that hits a little too close to home right now. They are a wonderful family and even asked about Leah and tried to reassure us about her upcoming surgery in the midst of their own sorrow.

On Saturday it was nice enough that I took the girls for a short stroller ride outside. We all enjoyed that and if they were not so heavy to push around we could have gone much further. I am miserably out of shape since my workouts seem to be taking a backseat to everything else going on.

Leah continues to feel well. She is tired out, but we hear her voice talking at us when we get up in the morning until we go to bed at night. The other night she was up at 2 AM to use the bathroom. While I was helping her she immediately starts in with, "Tina....tomorrow we need to fix Chloe's dresser drawers. I think Grandma Karen is a little confoos-ed. She has her pajamas in her shirt drawer." Her brain is working constantly. So, the next morning when they got up Leah decided that Chloe should be big and wear underwear (which was what was occupying the one pajama drawer). Chloe has been doing some work on potty training and even brings up on her own when she needs to go. If I were paying attention more I think she could be trained. She has even pooped in the stool several times now after telling us she needs to.

Surgery is fast approaching and our prayer list is long. We ask that you pray for her scan on the 24th to go well and show a shrinking tumor yet again. We recently have been made aware of a child in Iowa City whose tumor has grown and shrunk at different points during chemo. and the thought that that is even a possibility is frightening. We also ask that you pray for her surgery on the 29th to be successful. The doctors have discussed several times that surgery is the cornerstone of her treatment--but the surgeons will need 100% resection of her tumor, so please, please pray for the surgeons to get all of her tumor, the spots in her lung, and that they find nothing else suspicious as well. Please pray for her continued good health, a fast recovery, and for her to be brave as they place an NG tube in her on the 28th.

Before I post tonight, Leah has asked if she could type for you, too:

georgenepresentblanketlittlesisteriwenttoolivegardenforlunchtodayjh njgh nvnnjh jithjjfgnfjbthu
ghj hcbhbjghutyutjinjfgudihuthutyuytthjugfyfghgyfLEAHCHLOECHRISTINARISTAU

Saturday, March 11, 2006

March 11, 2006

Wow! We've neglected to post since Wednesday. How time flies. Obviously, there has not been much to report. We've continued to have good times and Leah feels well. Thursday was highlighted with a visit from Pastor Feldt and a trip to Target. Leah insisted we needed to go to Target and we were reluctant because we didn't need anything. It was actually a fun little family outing.

On Friday, Leah had her in home pre school session. When I arrived home, they still had paint on their faces. Somehow Chloe was involved in this activity as well. Leah is refusing to take the paint off her face and continues to still have a red nose. Chloe's nose is purple. I'm sure bath time tomorrow will be disappointing. Tina and I made the trip to Bellevue to Kyle's visitation. We both felt very good that we went, eventhough the circumstances were obviously not ideal. Please keep praying for his family as they move on to a new journey of dealing with their grief, yet also celebrating his life. Tina and I did enjoy the time we were able to spend with eachother alone. We enjoyed the scenery from Dubuque to Bellevue on the way there and listened to the Hawkeye game on the way home.

It was nice to have another spring like day again. This reminded me to thank those who brought by daffodils from the American Cancer Society. We enjoyed watching them blossom. The words of encouragement on the card state, "The daffodil is the first flower of spring and with spring comes the eternal hope for a world free of cancer." That's something to pray for!

God bless,


Wednesday, March 08, 2006

March 8, 2006

Leah had a good day today. The highlight is that Grandma Karen brought over her dog Molly to visit. Molly is a Yorkshire Terrier and is full of lots of energy. Leah refers to her as "that dorky dog." When I arrived home from work, both Leah and Chloe reported that they had a great day with Molly and giggled about the fact that Grandma Karen and their mother had secretly planned this visit.

Our sad news is that Kyle, a 5 year old who fought cancer for over two years, passed away today. His mother became close with Tina and helped us out a ton with advice on how to be an advocate for your child with cancer. We spent a lot of time on the same floor with them in December. Please pray for his family. Immediately when I read the news all I could think of is John 14. God has prepared a very special place for Kyle! Though our contact with Kyle was minimal compared to others, the way he and his family have carried themselves through their journey has been very inspirational.

Our schedule for the rest of the month has been completed. Leah will have a pre-surgical scan on the 24th before her surgery on the 29th. The only thing frustrating about the scan is that it will take place at 2:00 pm. That means no food or drink for six hours beforehand. I'm assuming that after the scan and recovery from anesthesia that she may be a tad bit ornery.

Okay, now some positive comments! We will have a great three weeks until surgery. We do have an awesome medical team in Iowa City helping us through this. We do have hundreds, maybe thousands, praying for and rooting for Leah. We will use all of our positive energy and yours to climb this mountain!



Tuesday, March 07, 2006

March 7, 2006

Leah has returned from Iowa City. Grandma Kathy drove down to pick her and Tina up and they were discharged around 4:30. They arrived home at 7:00 after a quick trip to Prairie Lights Bookstore. Leah ate well tonight at home. We were a bit concerned about this during her stay at the hospital, but I would imagine the atmosphere and IV have something to do with her appetite. We have found out that we will be meeting with the surgeons after a CT scan about a week before Leah's surgery on the 29th. We have a long list of questions.

I played DJ tonight as Leah and Chloe danced around the living room. Naturally, Princess Leah gets to pick all the songs. Her list of favorites include 867-5309/Jenny, Celebration, Video Killed the Radio Star, and 9 to 5. Yes, we have subjected our children to a lot of awful, but catchy (if your 4) 80's tunes.

Please pray that Leah's health will remain strong after this round of chemo. It is very important that this happen in order for the surgery to stay on schedule. For the first time, we have been instructed to be careful of her surroundings. Thus, we will be isolating her a bit more than usual and asking visitors, "Do you have a cold?" I think we should be pretty safe due to the fact that everyone in the house had a cold last month. Actually, is there anyone out there that didn't have a cold or flu bug in February?

Please also say a special prayer for all of the other children and their families we have met over the past 3 1/2 months: Bailee, Megan, Kyle, Cameron, Courtney, Clayton, Adam and many others. May God show them his grace and mercy.



Monday, March 06, 2006

Monday, March 6, 2006

Everything is going well in Iowa City. I am reporting from Denver. Tina has commented that a lot of our friends from the hospital have stopped by this evening, including Jeremy (nurse assistant), James (nurse assistant), Liz (student/Dance Marathon volunteer), and Dr. Nancy. Dr. Nancy is back on our floor for March as a resident pediatric physician. She helped during our long month of many stays in December. Leah used to fear her, but they are slowly developing a positive relationship with each other in their own little way. Very similar to the interaction between Leah and Dr. Rahdi. Leah still claims that she is not friends with them and it usually followed with some blushing and a smirk on her face. Sunday morning, I witnessed the funniest Dr. Radhi/Leah encounter thus far. Every time he walks into the room over the last month or so Leah puts on the worst looking, contorted facial expression one can imagine. Well, Dr. Rahdi took two steps in the room and replicated the facial expression at the exact same time Leah did. Leah even laughed about it later. I have to say he one the battle that day and was proud of him for giving Leah a bit of her own medicine.

My stay was almost uneventful except for one major breakdown on Saturday that was caused by a lack of sleep/nap on Friday and Saturday. Leah screamed for her Mom for an hour. I tried every trick I could think of to calm her down - humor, tough love, etc. Luckily, Mrs. Larson (one of Leah's teachers) and her family stopped by after the Iowa game. Though Leah wasn't overly polite, Mrs. Larson did calm her down and set the stage for Leah and I to mend our relationship. All was well about fifteen minutes after Mrs. Larson left and Leah and I had a lot of fun reading, playing memory and UNO again that night. We have even found that we like to watch America's Funniest Videos together. Leah should get discharged from this, her 5th round of chemo treatments, late tomorrow afternoon.

Again, thank you to all of our support team - our family, friends at home, new friends and medical professionals in Iowa City, members of our church, blog readers, the communities of Denver, Waverly, Readlyn, & Janesville, those who don't know us that are constantly praying for Leah, etc. There are so many to mention. All of your kind acts, thoughts, and prayers are strengthening us and Leah every second of the day.

Later this week I will write in more detail about the specifics of Leah's benefit that so many have worked so hard on for us. This will take place from 5:00 - 11:00 pm on April 8th at the Denver Legion. Leah thinks it will be quite the party. We hope she will be out of the hospital in time from her March 29th surgery to enjoy it. There is also a Cookie Lee jewelry party at the library in Readlyn on Thursday night, March 30th and 40% of profit will be given to Leah's fund. It is a cash and carry sale and the Cookie Lee representative plans to have a lot of jewelry to offer that night. If you do have immediate questions, please feel free to e-mail me at and I will forward your message to the proper contacts. Otherwise, we will post the e-mail addresses of those contacts and further details later this week.

One last thing, a very special thank you to Sara Hunemiller. Her entrepreneurial spirit and hard work on the LOVE FOR LEAH bracelet sales is to be commended.



Saturday, March 04, 2006

March 4, 2006

Leah has started round 5 of chemotherapy and is in Iowa City tonight with Chris. We left on Friday morning and were admitted to the hospital by 10 AM to start hydration so chemotherapy could begin. Our initial check-in at the clinic where Tom helped us went well and Leah's port accessed and had blood return right away. Chris worked on Friday and arrived in Iowa City around 6:30 PM. My mom and I left shortly after that to return home. Leah was not happy to see me go, but Chris played Memory with her and read her books and reported that the evening went well.

Today Chris and Leah had a few visitors-the Ramkers and Mrs Larson, which helped break up the day. Leah is up A LOT to use the bathroom so she is not getting much rest and is very tired (probably crabby, too). I will go to Iowa City tomorrow and be there with her until Tuesday afternoon when we plan on being discharged.

The biggest bit of information we have received is that surgery is scheduled for March 29. This is exciting and scary at the same time. We are grateful that the tumor has shrunk enough to do surgery, but this is a major surgery with risks, too. Two pediatric surgeons will work together to perform her surgery which they estimate will take nine hours. In addition to removing the tumor and a portion of her liver they will also need to enter the lung cavity to remove the two spots from her right lung. The doctors have indicated they believe this is scar tissue, but without being certain and wanting to leave nothing to chance are planning on removing those as well. The gall bladder which is located close to her liver may also be removed to assist with surgery. We are asking for many, many prayers that her surgery is successful-that doctors can remove the entire tumor and the spots from her lung, that Leah does not have complications from surgery, and that there are no other surprises during this phase of Leah's treatment. Right now a scan is scheduled for the week before surgery to see one last time what her tumor looks like and the shrinkage that has occurred in round 5. We will be admitted on March 28 in order to have an NG tube inserted for Leah to be prepped for surgery. I am already dreading this and asked if there is any way to do this that won't be traumatic. Unfortunately, there is no way to do this except while Leah is conscious (and probaby having a fit).

Since I have been back in Denver today, Chloe and I have enjoyed being at home and spending time together. She has been quite happy to spend time with me. I even finished reading a book (back in my "normal" life that was a daily occurrence, now I have read so little that reading anything is impressive) and attempted a little cleaning. Chloe and I also took a fast trip to the mall to buy some decorative pins for the tops of crocs that she and Leah have. They are cute-and quite a fashion statement.

Please continue to remember Leah in your prayers-especially for more tumor shrinkage and a successful, uneventful surgery that places her on the road to recovery.

Wednesday, March 01, 2006

March 1, 2006

It's hard to believe we will be back in Iowa City for five days starting on Friday. Things have seemed "normal" around here for the past couple days. That is good! Tonight Chloe and I attended Ash Wednesday services at our church. That left Tina and Leah some quiet time and a chance to go visit the Sunset Home. Church started out with a soup supper by the youth group, with proceeds being donated to Leah' s medical fund. Thank you to all who participated. Chloe made it through the service without any toys, books, etc. thanks to our neighbors in the pew, the Cashman family. When I realized I forgot the entertainment bag, I had to strategically locate us and it worked out well. I hate to admit that I was sidetracked a few times during this meaningful service......but Chloe did a few cute things. First, after a couple of the prayers, she would say Amen outload, always a second too late. The other which maybe isn't so cute is that she kept finding Asian beetles and handing them to me. I couldn't wait to wash my hands. Naturally, I had to report to Leah when we got home that Chloe was on her best behavior.

Tomorrow afternoon Leah and Chloe are going to have some pictures taken by Deb Smith. They are excited about that. Leah's appearance is no longer that of someone in a concentration camp due to her weight gain over the last month. I have compared her new look to that of a wrestler whose season ended a week ago. I call it the "puffy" look. Do we care? No, vanity isn't real important in our lives right know. But to be informative, I thought I would mention it.

Our schedule this weekend is to have Tina and Leah leave for Iowa City early Friday morning. I will drive down and take over Friday night through Sunday night when Tina will come and finish things out with Leah until a Tuesday evening return. The only downfall for me will be the fact that Leah is a BED HOG. She expects us to sleep with her, yet we are only allowed a few inches to sleep on our side. We will get in an argument about it and I'm sure I will lose eventhough I am the parent. Other than that, I am looking forward to reading many books and watching many videos with Leah during her weekend of chemo and hope that Supermom Tina can get a much needed restful weekend.