Tuesday, January 31, 2006

January 31, 2006 - Part 2

Iowa City greetings. We are very unhappy to report that we were admitted today to the hospital. Our initial intent of coming down and getting blood changed midway through the afternoon.

This morning Leah was up bright and early as I wrote earlier and we were in the car by 7:30 AM. Once again they had a hard time getting a blood return from her port. This is so frustrating because Leah hates to be accessed so much and cries until they finally leave her alone. If they cannot get blood back they have to fiddle around with things for a long time. They ordered TPA but did eventually get blood back without using it. While we waited for blood results we decided to try out the Melrose Diner. This is probably the nicest restaurant in the hospital. Leah was happy to get to try the pasta meal, which she had for leftovers later. We took a trip to the 7th floor to see our friends there and ran into Dr. Rahdi, who told us he had brought present for Leah. We were called down to the clinic since our blood results were back and then told that Leah's hemoglobin was 8.2. I was so sure that it was lower than 8-which is when they transfuse, but they also realize it is on its way down, so transfused anyway. However, the big problem is that Leah's magnesium, potassium, and carbon dioxide (and who knows what else) were all extremely low. Leah started different prescriptions last Friday to help with these things, but as of now either the dosage is wrong, or the cisplatine is really taking a toll on her body. These are all things that the kidneys are wasting because of cisplatine. There is enough concern that we were not allowed to go home and Leah is receiving IV supplements of these things. They continue to check her electrolytes with lab draws and she will receive more supplements in the night. Leah is definitely not excited to be here right now. She is wearing electrodes so they are able to monitor her heart and from time to time wears a monitor her finger to monitor her oxygen saturation. She is tired, and today there have been more tears about being here than there are normally.

We were not planning on staying today at all, so my mom and dad brought Chloe down with a bag of things - and a few boxes, too. This is the first time I have not brought a bag with us and this is the only time we have been admitted. My mom is staying with us tonight and my dad, Chloe and Chris' mom (who was down here today with us) went back around 9 tonight.

Dr. Rahdi stopped and saw Leah today and brought her her present- a cute Dora purse with Dora chocolates and some Dora stickers. She still insists they are not friends. They are checking AFP numbers tomorrow-something I no longer look forward to and am coming to dread. Dr. Rahdi and I discussed that it does signify tumor activty and a rising number is not good news. Right now the surgeons are so hesitant to think of surgery that it looks like we will try a fourth round of chemo with a different set of drugs in an effort to shrink her tumor. Dr. Rahdi did not tell us anything we have not already heard, but after seeing Leah go through all of this today and all the tears and then to think that her tumor may not be responding anymore, it is devastating. The other part is that Leah is listening to all of these conversations and I don't think she understands all of them, but it is amazing what she chimes in with. This past weekend I talked with a mother who lost her son to cancer when he was just a little older than Leah. Many of her comments struck home with me-one being the fact that it seems that so many of the best and brightest shining stars are the ones who have cancer as children. While I know there are many shining stars that do not have to deal with cancer, it does seem that so many of the children up here are truly that -and that has been commented on many times by nurses and volunteers as well. Her other comment that seems a very apt description of the events we have had happen to us these past two months is that when your child is diagnosed with cancer it is like waking up in hell and not getting out any time soon. Right now that seems to be very true.

Our prayer list gets longer as we ask that God help Leah's tumor shrink, help her AFP decrease, be with the doctors tomorrow as they discuss how to best proceed with her treatment, help her electrolytes return to normal so that we may go home, and help her continue to fight. We thank everyone for their prayers and thoughtfulness. Just minutes after arriving in our room on 7th floor we had an enormous basket of fruit delivered that included Wheat Thins, cheese, and carrots. We have already eaten several different items, and I am amazed at the different kind gestures that our friends and family continue to think of to help us through this.

January 31, 2006

I am posting this early this morning since I fell asleep putting both girls to bed. Today we will be heading to Iowa City for Leah to get blood. Mondays are Leah's finger poke days at Covenant, but I could tell this weekend already that she is anemic, so instead of being poked twice, I called Iowa City and explained that since she needed blood perhaps we could just wait until today. Now that she is on the medications for her kidneys they will no longer be able to get enough blood through a finger poke and her port will need to be accessed for her Monday labs as well. This will not be good news for Leah. I did talk to a nurse last night at Covenant who knows about ports and accessing them and will work with us on how and when we need to do that. This does mean that we can get blood in Waterloo, so that is one positive aspect of this.

I am not looking forward to the drive down to Iowa City and back. We will do the same trip on Thursday, too, so it is a lot of road time. Today we will not see anyone since we are just there for a transfusion, but generally there are some doctors that walk by and check in with us.

Yesterday instead of her finger poke Leah insisted we still get a cookie from Grannie Annie's at Covenant. Since I needed to go to Target anyway we stopped there first and had a morning snack. We also went to Target where Leah found some different foods she was interested in.

Right now Leah is tired much of the time. She does not complain about it a lot, and is still interested in doing things with us, but a nap is a necessity for her. On Monday she did go back to preschool for a bit. Her class meets from 12:30 - 3 in the afternoon so I knew that this would be exhausting for her and she may not make it through the entire class. She had her regular driver, Deb, pick her up and take her - just like normal. Monday was Connor's birthday and hat day as well so she had her things laid out the night before. She did not last very long when she was there, but she thought it was good to be back and see her friends. The last time she had been at school was the day before her biopsy at the end of November. She still talks about school like everything happened just yesterday for her, and she does enjoy the different activities that school provides.

After she returned from school she took a nap, but last night she was ready to go again and went to Wal-Mart with Chris. Her big plan was that she was going to sleep with us in our bed last night. Leah has never been a good sleeper so this was like a blast from the past because she did spend many nights in our bed with us snuggling up. And, just like before, there was little room for me to sleep as I gripped the edge of the bed so I would not fall out.

This morning I was up around 6, and so was Leah the light sleeper. I tried to convince her to rest on the couch, but instead she ate breakfast: 2 pieces of cinnamon toast, a piece of provolone cheese, a piece of colby jack cheese, and some croutons.

I need to quickly get ready for our Iowa City trip. Chloe also has to get dropped off at daycare today much earlier than normal. She usually has her own agenda, so this will be interesting.

Pray for Leah's treatments to be effective, for tumor shrinkage, declining AFP numbers, and for her continued strength as she endures all these different medical procedures.

Sunday, January 29, 2006

January 29, 2006

After taking the weekend off from blogging we have had people inquiring what has been happening and checking to make sure we are all okay here.

There is nothing exciting going on in Denver. We have had a very uneventful weekend at home. I can barely remember Friday night it was so uneventful. We did get Leah's new prescriptions filled so she started new medicines that night. This means 3 new drugs two times each day. UGH! The one medicine is very acidic, but said nothing on the container so we gave it to her like the other medicines-just put it in the dropper and squirted it in. This seemed fine on Friday night, but Saturday when we tried this she threw up everywhere after about 30 minutes. Only then did I question the medicines. At first I thought it was too many things to take all at once, but later I came across the directions that include diluting the one med. in water and then drinking a half a glass of water after finishing the medicine. While I am sure this does make it better, Leah spends hours trying to get the medicine down--5 sips every 5 minutes, or whatever other thing I can think up-and has no desire to drink more water when she finally gets the medicine down. We are trying to work on our evening dose right now and each time there seems to be more resistance.

Leah is very tired this weekend. We go for a finger poke tomorrow and I am certain she needs blood. However, there is no magic number about when she must be transfused and she has been planning on going back to preschool for weeks now. Tomorrow is her friend Connor's birthday that she does not want to miss. I know that if she needed to be at the hospital we would have to go, but want her to get to be "normal" for just a few hours of her day. That means Tuesday we will need blood for sure. I am working on contacting a nurse at Covenant who is able to access ports. Having a transfusion in Waterloo would seem much more convenient than driving to Iowa City a few times a week.

My sister, Suzanne, was back this weekend and spent a large part of yesterday taking care of Chloe and entertaining. Leah and I went to the Sunset Home both yesterday and today to visit GG, and she and Suzanne and Chloe got to the Denver store. Leah's new favorite food is pancakes, so each day we make a new batch. Part of the appeal is that she enjoys mixing them up.

Chloe's excitement of the weekend is that she now has a twin bed in her room. She was using her crib that converted to a daybed, but it was still not conducive to have anyone try to lay in bed with her. The crib mattress is just too small. She is loving having a Dora bed (comforter and sheets) like Leah and did sleep in her own bed last night. I don't think this is a real time saver for me, though. Now I take turns lying down with the girls and go back and forth between rooms to get them to sleep. The one thing I have going for me is that Chloe has not been napping so she is very tired for bedtime and has been falling asleep quickly. Leah, on the other hand, is sleeping so lightly that if I even roll over while lying in bed with her she grabs for me. I am not enjoying these sleeping arrangements, but if I were in her shoes, I would like someone to be with me, too.

This coming weekend is Dance Marathon in Iowa City. We are signed up to attend and will be spending Friday night in a hotel. This is a big fundraiser for children's cancer that many, many families take part in. Leah still does not know what to think of it, but we are looking forward to it.

It is almost bedtime here. I am trying to hold off for a bit so I can see Desperate Housewives. I have missed so many episodes this year that this is a new one to me. Chris also got to attend our church's wild game feed. We joked with Leah that he was going there to eat a dead raccoon and skunk. She thinks this is all pretty funny, and told him not to bring any back for her.

AFP numbers are always at the back of our mind, our at the forefront around 3 AM when I am not sleeping. I have been doing a great deal of praying that the doctors will make good decisions about how to best proceed with treatment and also that her tumor is shrinking. We know that many, many people are praying right along with us and we ask that you continue to do so as Leah's treatments continue. I do plan on posting each day despite my weekend off, so please continue to check our blog.

Friday, January 27, 2006

January 27, 2006

I did not feel like blogging last night. Our Iowa City day was concerning to say the least. We left at 5:30 AM and brought Chloe along like Leah asked. The girls are so cute walking down the halls there with their matching Dora pajamas and sweatpants and wheeling their little Dora backpacks.

Leah's port did not have blood drawback again, so we had to wait for TPA and try again after an hour. Tom, our nurse, still did not have luck, so he took the needle out and reaccessed her port. Leah was so tired that she had quite a fit about everything. I am sure a lot of it was fatigue related. She and Chloe were in bed at 8 on Wednesday night, but still up at 11:30. There was an awful lot of giggling going on up there. Leah had all sorts of ideas about where Chloe should sleep and would laugh and laugh at every suggestion. It is hard to discourage that because we cherish each and every happy moment. When Chris got home he came to see what was going on in the bedroom and all three of us were "hiding" from him under the covers. At that point we knew sleep was not going to happen anytime soon.

Dr. Rahdi had done quite a bit of research for us by yesterday morning. He has talked with the head of hepatoblastoma in Europe who he knows because the man did a presentation for them at Iowa. He had also met with the surgeons and radiologists and his team of doctors. All agree that a rising AFP (which it did again a bit by yesterday) is not good. That indicates tumor activity. However, the surgeons have looked at her tumor very carefully and feel that surgery is questionable at this point. Her tumor is much smaller, but still has a lot of blood vessel involvement that would make things risky. In addition, they would need to go into her lungs to remove her two spots there. While they may be just scar tissue, they could not ignore those at all. We are still "waiting and seeing" because her counts are going to bottom out next week and we cannot do anything until after that time. This waiting part is difficult for me, the control freak. After her counts rise we will have to reassess things again and see where we are. She could do a fourth round of chemo. using a different, harsher drug, doxorubicin. There are no guarantees that this would work, but she has not seen it before so should not be resistant to it. As Dr. Rahdi pointed out a tumor that is out of control will not respond to anything, but her tumor does not appear to be out of control because it has shrunk considerably. There may be another scan involved to see if and how much the tumor has shrunk because any additional shrinkage would make surgery an option, perhaps.

In addition to that news, we called for her blood counts when we returned home and found out that she will need to have two new medicines each day because her chemo. drugs are starting to affect her kidneys. This was explained to us long ago, and is normal. The kidneys should work normally again, but to help them out we get to start medicine tonight. Leah has gotten so good about taking medicine, but telling her there are more medicines involved for her each day, was not a happy bit of news.

Last night Leah was sooo tired. We stopped at the Janesville Library after it was closed so she could check out books. We also saw our friends' new house and Leah ate a little food there and was entertained by their pets.

Speaking of entertaining, having Chloe along is quite entertaining for all involved. She has her own ideas about everything. When we were up on seventh floor visiting James and Kristi she decided to strip out of her clothes. Everyone gets a chuckle out of her. In the elevator she can only reach one button, the bell. The days in Iowa City are long for her, but since Leah wants her along and Chloe wants to be with all of us, I don't see a reason why we shouldn't take her. As long as two adults go along, it seems to work out.

I am hoping Leah acts a little perkier today. Her preschool teacher is coming to have school with her this morning. I am working today, so Grandma Karen will be here.

Say many prayers for Leah. Our news yesterday has thrown us another hurdle to overcome. It is heartbreaking to watch her go through all of these procedures, but there is no choice because we still are working on a cure for her. She is a tough little cookie, but she is looking tough, too. Her eye now droops because of the vincristine, her hair is thin and ratty, and the sparkly, happy, innocent eyes don't look that way anymore. We feel helpless because as parents we want to protect our children, and in this case that ability has been taken away from us. So, we ask that you remember her each and every day in your prayers-for her to be strong as she goes through different medical procedures, for her tumor to continue to shrink, and for her doctors to have wisdom as they proceed with their plans to help her heal.

Wednesday, January 25, 2006

January 25, 2006

This update will be short. I still have to get Chloe to bed and Chris is at work tonight. Leah was tired out so she is up in bed, but would really like someone to be up there with her.

Last night after I posted my sister, Suzanne, called. We were nearing the end of our conversation and Leah was sitting on my lap while we were talking. Suzanne explained that she had to go because there was breaking news. I asked, "breaking news? what breaking news?" To which Leah chimed in with, "Suzanne's getting married?" Suzanne has agreed that we could post this comment, but we should explain that the breaking news was in regards to the Des Moines School Board and not to her love life. And no, as far as we know, she is not getting married.

Today was a fine day. Leah spent a few hours sorting the books in her bedroom. She was quite organized about this- all Arthurs in one pile, Max and Ruby's in another, a stack of Dora books, Dr. Seuss books, Berenstain Bear books.....she was a hard worker. She decided early on that today would be a pajama day, so she wore her new fancy Dora pajamas and hung out. She was not overly hungry but before bed tonight managed to eat four Reeses Peanut Butter cups. She has also been requesting chili and taco salads (without the lettuce). They did say that spicy foods may taste better to her because it masks the bad taste in her mouth.

While she may have been a bit tired today, Leah was also very talkative. She has lots to say and does not forget a thing. AJay and Anna visited us today as did her babysitter, Karen, my friend Amy, and my parents. Grandma Karen also was here today to help out and did some laundry and dishes for us.

We will all be going to Iowa City tomorrow for Leah's appointment. Obviously we are a bit nervous about this one because we would like them to have some sort of answer about her rising AFP numbers and also a plan as to how they will proceed with her treatment. I still have to write down my list of questions for them tonight.

Continue to pray for Leah's treatment to be successful and for wisdom and direction for her doctors as they determine how to best proceed.

Tuesday, January 24, 2006

January 24, 2006

What a difference 24 hours makes. Yesterday we were rejoicing that Leah's tumor had shrunk a significant amount. Today we are worried once more because her AFP reading is back up to 257,000.

I called this afternoon to get the results from yesterday's test. I almost wish I had not called and enjoyed feeling happy for a bit longer. I talked to a physician's assistant who we have met before in the clinic. He had no real answers for these results and ended up paging Dr. Rahdi. Dr. Rahdi and Dr. Loew talked it over as well, and are not sure what is going on. The AFP results do not correspond with the scan yesterday. They did say they were "concerned." However, like everything all we can do is wait. We have heard that we may be having surgery earlier than originally planned. This is still all very preliminary because the surgeons will need to look at scan results to see if resection is feasible at this point. It is very discouraging, frustrating, and heartbreaking to have to wait and wait and wait some more and still not know what is really going on. Luckily Leah does not care one bit about AFP results and has happily chatted away about many things today. We do have our scheduled clinic visit on Thursday when we will see Dr. Rahdi and try to sort out some of our questions. I wish that I knew I would feel some relief after our visit, but I am doubting there is any answer for things at this point.

Leah does not feel too badly today. Connor and Deb Smith visited this morning. She and Chloe had several knock down, drag out fights and when Chloe pottied on my wool sweater Leah's response was, "I find this kite hoomorous."

So, our good news of yesterday takes a downward turn today on this cancer rollercoaster. Please, please pray for resolution to this AFP problem, for her AFP to lower, and for surgery to be possible if needed.

Monday, January 23, 2006

January 23, 2006- Scan Results

First of all, we had good scan results today. Second of all, while we are happy with the results, we want you all to realize this is only one hurdle in a long, long race.

Chris, Leah and I got very little sleep last night. We enjoyed our new roommates but Jewel has many monitors that do a lot of beeping, and a father who snores like a buzz saw. He seemed oblivious to the beeping monitors and when he finally woke up to call a nurse, he was the first one back to sleep while we lay there listening to his snoring. Jewel's mom never appeared to wake up during the night. Perhaps she has gotten accustomed to the snoring and finds it soothing or something.

We went to the scan around 8:30 this morning. Leah did well with being sedated. I could tell when she was done, though, because we could hear her wailing out in the hall, and when I went back in her CT room she was already trying to climb off the gurney. She was all tangled up in her cords and insisted the IV be removed immediately. We went to recovery for a bit, but they were happy to send us back to the seventh floor since Leah was doing a lot of screaming. This seems to be how she deals with coming out of being sedated.

Dr. Loew rounded shortly after we got back to our room, but did not have anything to tell us at that point. Leah took a nap, we got her ready to go home and packed up. Finally around 1:30 we were saying goodby to James who was working on 2nd floor today and got called back to our floor to see the results. Dr. Loew was able to show us the images on the computer and compare them with the scans done in November. Now Leah's tumor is approximately 8 cm. x 8 cm. It used to be 11.5 cm x 12 cm. They called it a 33% reduction. The two spots in her lungs are nearly gone-they are literally just dots. Originally Leah's tumor crossed the midline of her body and took more than the right side of her abdomen. Now it clearly does not cross the midline and her other organs are getting a bit more room. We are very happy with these results and feel encouraged, but also see the larger picture. We are still only starting round 3 of chemotherapy. We have at least one more round to go before surgery, a serious surgery with many possible outcomes, and then more chemotherapy, and the possibility of more treatment after that. Things are moving in the right direction, but we have a long road ahead.

We know that God has heard many prayers for Leah already, and today we are saying prayers of thanks for her scan results. We want to ask you to please, please continue to pray for her in the days, weeks, and months ahead as we continue this battle.

Thursday we go back to Iowa City for another vincristine treatment. We will be giving her anti-nausea meds at home for the next day or two, but are looking forward to being here and having a somewhat normal life for a bit.

Sunday, January 22, 2006

January 22, 2006

Tomorrow morning is the dreaded scan. I have spent another day thinking of little else. Our day will begin early because she is scheduled to go to anesthesia around 7:15 AM. The schedules seem to change a bit around here, so we will be ready whenever we are summoned.

Chris and Leah had another night of a lot of bathroom visits. Even though she was not being awakened every two hours to use the bathroom, she was still being hydrated a lot, so woke up on her own to use the bathroom. This is one time we almost wish she still used Pullups. Around 6 in the morning Leah woke up and tried to kick Chris out of bed by telling him he needed to shower. I doubt he was thrilled by her demands.

Their day was uneventful-not even a trip to the library. Leah was still quite tired due to lack of sleep and she did receive her Vincristine and 5 FU today. My aunt and uncle came to Iowa City for a visit and read Leah some books and brought her some grapes, which seemed to be a hit with her. I have tried to order them off the menu for her, but you have to be six years old to get grapes here.

Chloe and I slept in a bit-after staying up talking on the phone to our neighbor Esther til almost midnight on Saturday. Chloe loved getting to sleep with Mom, even though she woke up crying twice-very unlike her. We went to church this morning. It is the first time I have been able to go since Thanksgiving. We have been home a few weekends, but we have also been told to avoid crowds for Leah's sake and if her counts are low we certainly are not exposing her to any germs we don't have to.

I did manage a workout this afternoon while my mom watched Chloe, and then Chris' mom came over to do some laundry while I packed. She took Chloe back to her house since she will have her overnight tonight and take her to get her second flu shot. Leah is rather depressed about missing that. She has mentioned several times she wants to see Chloe get a shot. Perhaps after having everyone poke and prod her she is ready to see someone else's pain.

As I have mentioned, Leah rarely can be tricked and she also never forgets anything. Earlier Chris handed me a piece of cherry pie my aunt had brought. I told him I did not need to eat the whole piece and Leah chimes in with, "yeah...if you eat it your butt will get fat. Remember when James told you that?" This all goes back to a conversation I had with James over a month ago when Chris snuck a bag of Gardettos into our things we brought to Iowa City. James is so helpful sometimes.

Tonight Leah was moved to a different room. When they were discussing new admits they were getting tonight that would need single rooms I knew our days were numbered. I hoped they would be able to leave us in our room until we left tomorrow, but there is no other room free up here, so we have now moved into room 57. Leah's roommate is a cute little five year old girl named Jewel. Unfortunately Leah does not seem too excited about our room change. We do have a lot of stuff that we are now cramming into a smaller space, but it is OK. The biggest challenge is determining whose machines are beeping and which nurse we need to call.

Thank you for all your prayers, and please pray, pray, pray for good scan results.

Saturday, January 21, 2006

January 21, 2006

Once again Chris and I have made the trade. He is in Iowa City with Leah for the night and I am in Denver with Chloe.

Leah had a long and sleepless night on Friday/Sat. She is being well hydrated so her body can deal with the cisplatine they are giving her, so she has to use the bathroom often. They are scheduled to wake her every two hours, but she usually woke on her own every 90 minutes. Besides the bathroom visits she had labs drawn from her port two different times, vitals taken, and her machines beeping after different doses of fluids were finished being administered. The one resident came to see her at 7:30 this morning and I did no more than grunt at her. It felt like we had just gone to bed. I suggested sleeping all day to Leah, but she insisted we should get up and at least go to the library. So, around 9 she had her last blue yogurt and we decided to be awake. This weekend Dr. Rajiv is on call. We have met him once before and I have liked him both times. He also came around 9, so we were through with doctor visits early in our day. The one thing we did discuss is that she was secreting glucose in her urine, so they changed her fluids they were hydrating her with. Dr. Rajiv was not concerned with this and said it is common with different chemotherapy protocols because in an effort to hydrate the body well they give it a large amount of fluids. The kidneys are only able to filter a certain amount and Leah's had reached their limit. It is all a big balancing act because whatever Leah's urine output is, they replace that with fluids. Her input must always be greater than her output, so the more she goes to the bathroom, the more fluids she gets. It is a vicious cycle.

Chris, my mom and Chloe came down around 3 pm. Earlier in the day we had deaccessed Leah's port. Her needle needs to be changed every seven days to prevent infection. I knew Leah would not like this at all, and I was right. She did enjoy being off of her IV pole for a while and we even had a running race to the elevator on our way to the library. It felt great to be "normal" even if it was only for an hour. Right before Chris, Chloe and my mom came Kristi reaccessed Leah. There are always tears, but it is over quickly. Chloe was in fine form again today. She is getting to know Kristi, too, and is much happier to see everyone in the hospital than Leah is. Around 4:30 I left with my mom and Chloe to Leah's loud screaming and wailing. This is painful for all to listen to, but a large part of it was her fatigue from lack of sleep. She really had done a great job of acting fairly happy and cooperative up until then.

Despite the fact that she had a heavy chemo drug last night that is known to cause nausea, Leah ate a lot today by the time I left. She had yogurt for breakfast, a cookie from my mom, a chicken nugget, macaroni and cheese, a small piece of pizza and a few fries-all by 4 PM. Her desire to drink is quite diminished because of all the fluids she is getting. I am working on having the doctors agree to stop giving her fluids when we come in for fevers. That would mean she would be accessed, but just have a tube under her shirt they would hook up to her pole when she got antibiotics and do all her own drinking. We would be without a pole much of the time. I have noticed other kids in this situation a lot of the time and think Leah would be much happier to go places if she did not have this enormous pole we cart with us.

The scan is still scheduled for 8:15 on Monday morning. There will be some prep prior to that because she will be under general anesthesia. They have blocked off an hour and half for this. No one knows how long it will take since they are looking for some good images and various angles. There has been a great deal of prayer offered up for Leah already, and we ask that you continue to pray for her each day, especially now as we are waiting to hear of the chemotherapy's effectiveness.

Friday, January 20, 2006

January 20, 2006

Today has passed so quickly I have almost forgot to blog. We certainly have not been too busy to find time to blog, but between visitors, naps, library visits, and phone calls the day is almost over. Both Leah and I found it very difficult to wake up this morning. We finally managed to sit up in bed around 9 AM. Part of the problem with our hospital room is that we have what we call a theme room. Every morning there is a loud squealing, screeching noise followed by what sounds like water running in a shower. This goes on for the entire morning. Yesterday the nurses came in to see what was wrong with Leah's machines since the noise was heard in the hallway with our door shut. We reside in what we call the "rain forest room" and are hoping for a discounted rate because of this. It seems to have something to do with the heating system in the hospital and unless we have our heat turned up to 80 degrees, which is unbearable to us, the noise continues.

Dr. Goldman did not round until after noon today. There are many families being admitted now that are newly diagnosed. These seem to take longer since they have more questions and concerns and the doctors generally try to give them as much time as they need. Dr. Goldman did not have any news for us, anyway. We discussed the fact that chemotherapy would start tonight and that her creatinine clearance results were fine. He felt her hearing results from the audiologist yesterday were fine, too. This is something they monitor closely, of course.

We have touched base a few times with Kyle's mom. His surgery started a few hours early, which gave them less time to worry. When we stopped by their room this evening he was resting, but she felt hopeful that the surgeon removed the tumor and also ended up taking his adrenal gland that was cancerous, too. For more updates about him, feel free to visit his caringbridge site: www.caringbridge.org/ia/kyle.

Our new friends here the Crooks family also appear to have better news today. I checked their website earlier: www.caringbridge.org/ia/bepositive and was happy to hear that Bruce's counts are coming up. I still wish we could stop by there for a visit, but his unit is more restricted than Leah's.

Leah has finally fallen asleep, but will have to make sure she clears her bladder every two hours for 24 hours straight. We started this at 9 PM, so we have until tomorrow night to finish this part of treatment. She is always good about waking up on her own to use the bathroom at night, but they will be waking us up just to make sure the chemotherapy drugs do not stay in her bladder too long.

Chris and Chloe and my mom are coming down tomorrow. Chris will stay the night with Leah while I head back to Denver for a day. Then I will return on Sunday so we can both be here for her scan. Tonight one of the nurse's asked if we were excited to have the scan to see the results. This is a new way of looking at things. If I knew there were going to be positive results I might feel more of a sense of excitement. Since there are so many unknowns I feel mostly worried and anxious about what they will see.

Chris and Chloe spent their evening at the Wartburg/Luther wrestling meet in Waverly. They both had a good time being out and seeing people. Here at the hospital we have had many visitors today: the Buhrows, Karla and Kasey, Mrs. Goldfish, Tyler from Dance Marathon, Jeremy our nurses assistant who came by to visit....as Chris has pointed out we always seem to have a lot of people in our room. I know sometimes Leah does not enjoy having visitors, but we do.

Please pray for this round of chemo. to do its job and for good scan results on Monday. Please include both Kyle and Bruce and their families in your prayers as well.

Thursday, January 19, 2006

January 19, 2005

As usual our plans have changed again. After talking with Dina, the resident, and Dr. Goldman and Dr. Rogers, we are planning on starting round three of chemotherapy tomorrow. On Wednesday they were planning on sending us home for the weekend, then bringing us back on Monday for her scan and chemo. Chris and I talked about this, and even though it would be nice to come home for the weekend, it would be depressing to have to come back next week. Chris also happens to be off this weekend and could be in Iowa City more. I would also be able to go back to work a bit more next week if we had chemo this weekend. I talked with the doctors about this and the rationale behind waiting. Really, there are no hard and fast rules about this, so they are willing to have her start her chemotherapy tomorrow.

Today we are doing a twenty four hour creatinine clearance (we have to save all her urine output and they check it for various things). We also visited the audiologist to check her ears. Leah does have a bit of high frequency hearing loss. This is what they have expected, and they will watch it very closely. The ranges she is experiencing loss in are not those that include speech sounds, and seem to be fairly typical in cancer patients. It is still hard to hear that the things we are doing-and have no choice about- are causing her some permanent damage. Yet, there are ways to help people with significant hearing loss and at this point it is only in the high frequencies.

Leah had a good day. We went to the library and picked out some books and videos. She did an art project this morning, and we finally have a laptop checked out so she watched a few DVDs. Her appetite has been better today-she is back up to her 3 yogurts a day ratio.

Stephanie was her nurse today and Roshaun is her nurse tonight. She is familiar with both and enjoys them both, too. Roshaun talked to her about signing up to take Leah as one of her primary patients. That would be wonderful, and even though Leah did her best "I am the Queen and I won't acknowledge you are talking to me" faces, she did tell me later that she wants Roshaun.

Leah's biggest thrill of the night was channel surfing and finding Jim Cramer's show Mad Money on CNBC. Chris watches that, and had taught Leah that this is the Boo-yah show. She thought it was great to get to see it again.

We had visitors today as well. My friend Ruth came down, and Wendy, a college acquaintance visited again. Her husband Bruce is recovering from a bone marrow transplant, so she is back and forth between their home and Iowa City. Right now it is easier for her to visit me since he is in a unit that is more restrictive and Leah would not be able to visit.

The Reed family is also back in Iowa City. We met them right before Christmas. Their son Kyle is fighting cancer and will have surgery tomorrow to remove a tumor. This is his tenth surgery and we are praying right along with them that they receive good news. Please pray for Kyle and his family as well. Their website is: www.caringbridge.org/ia/kyle. Kyle has been fighting cancer for over two years already.

Please pray for Leah -for chemotherapy to be effective, and the side effects to be minimal, for the tumor to shrink. Please also include other families that are fighting cancer in your prayers-for Bruce and Kyle especially.

Wednesday, January 18, 2006

January 18, 2006

Go Hawks! Chris had a ticket to the Hawkeye game tonight and was able to witness an exciting game. Leah, Chloe and I watched it from Leah's room -much to their annoyance. They were waiting to watch Baby Einstein and the game took too long to get over with for their liking.

I had a good day in Denver. Chloe and I slept in and then I took her to daycare while I ran for a while. Six miles seems like ten right about now. I did get some good reading/treadmill time in, though, and it felt great. Chloe and I were back in Iowa City by 2:30 and had a trip to the mall for a bit. Then we were at the hospital by 4.

Even though I was dreading watching them both for the evening while Chris was at the game, it went very well. Since Leah has her IV pole and I cannot push that, carry two children, and walk around, too, we stayed in the room, read books, ate food, put bandaids all over each other-the usual girl stuff to do.

Leah's nurse today was Tom (from the clinic) who spends one day each week on this floor. He, Chris and James had "men's day" of sorts. Leah seem to be fine, although she is tired. Dr. Goldman rounded this morning, and now the plan has altered somewhat. Right now they plan on sending us home on Friday and bringing us back Monday for the CT scan and chemo. Since she has been sick they want to give her time to recover before hitting her with chemo again. I would like to get it over with, but also know that a few days should not matter, especially if she will be able to tolerate it better. Since she turned red yesterday from the one antibiotic they tried giving her Benadryl to counteract that. Benadryl is not the drug for Leah. Tom finally told the doctors that when they rounded. It makes her crabby and mean. It also makes her tired, but not tired enough to put her to sleep. They have decided to try the antibiotic without Benadryl over a longer period of time, and so far that seems to be working.

Leah's activities today consisted of a library trip and an afternoon art activity. We were fortunate enough to have some visitors this afternoon and evening--it is so nice to have people willing to stop in and spend time with us.

Leah happily reported to me today after I arrived that "Chis did everything on the list that I told him to do." She is a good helper and likes to be in charge just as much as I do.

Five days until the CT scan. As always my prayers are for results that show a shrinking tumor, chemotherapy that is working, and a girl with a fighting spirit.

Tuesday, January 17, 2006

January 17, 2006

I just arrived home in Denver from Iowa City. Leah is still at the hospital, but Chris is staying overnight with her. He and Chloe came down around 6:30 tonight and we stayed until almost 9:00.

Leah had a much better day today than yesterday. That translates into no fevers, no vomit. She definitely seems quite tired, but did not take a nap today, either. We managed to get to the library this afternoon to check out videos. We also played some pbskids.org games on the computer in the hallway. We still do not have a laptop in our room--amazing to remember life before computers since they are so necessary now. Her appetite was not as good today as it was on Sunday, but she had a yogurt for breakfast, some french fries for lunch and a piece of pizza for supper along with some ice cream. The big thrill of having Chloe come is that Chris and I took the girls for a wagon ride down to the cafeteria for ice cream cones. Chloe had a great time visiting. She was quite entertaining to everyone who had a chance to spend time with her. It makes me think of how much like that Leah was at the age of 2. Right now Leah does not seem as sparkly and entertaining, but after what she is going through, that is to be expected.

Dr. Goldman was the doctor who rounded on us today. He did not have much news for us, except that she starts another antibiotic "just in case" because of her fever and vomiting yesterday. I am willing to chalk it up to a stomach flu bug, but they have to cover all the bases. So, one of the side effects of the medicine is that it turns the skin red. This has happened to Leah in the past, but when they extended the time period the med. was administered she had no problems. Today, even with the extended time the medicine was administered, she turned red on her forehead, scalp and neck and back. She gets this antibiotic three times a day.

We continue to wait to see when they will start chemotherapy. They did not want to start it with her being sick and febrile. If she can remain without a fever, our guess is that she can start chemo. tomorrow night. That would mean it would be done by Friday morning. Of course this is all subject to change.

Leah is making friends with a few more nurses. Roshaun has been our nurse now several times and Leah no longer says much of anything when she is examining her. Roshaun's mother-in-law and I completed our graduate programs at UNI at the same time--another example of how small the world is.

James was off today, which is probably OK, since Leah has been picking on him. I also enjoy giving him a hard time and the other day told him he was lying about something. This has prompted Leah to call him "Liar" every time she sees him. Another example of the need to be careful of every single thing that comes out of our mouths since she picks up on everything. However, James has said he would bring us HuHot many times now, and we have yet to see any....so, perhaps Leah has a point. :)

There are only 6 more days until Leah's CT scan, and I have been praying each and every moment it seems that we get some good news. Please continue to pray for this as well, and her continued strength during this journey with cancer.

A Message from Leah


Monday, January 16, 2006

January 16, 2006

Yesterday Leah had a great day....today Leah did not. This morning already she complained of being tired and did not want to eat. So, we laid around and slept a lot. Because this is a holiday there has not been much to do. The library is closed, the restaurants are closed, and we still do not have a laptop. Since Leah does not feel well, that is probably fine, but I have been quite bored. This afternoon our friend, Graham, stopped by. It was wonderful to have adult conversation. Shortly after he left, Leah threw up. Since all she has eaten today is dairy products, it was quite stinky coming back up. I even had to do laundry here. That is probably not all bad. Leah's puppy is whiter than he has been since she got him two years ago. She has not thrown up again, but she does not feel well at all. There is no real reason why she is throwing up except that she has probably contracted a bug of some form. Lucky girl. Now we are waiting to see how fast she can get over this. I will talk with Dr. Goldman tomorrow about when they plan on starting chemotherapy. I know they would like her to be over this before they knock her down again. So, this is a wait and see game once again.

When Dr. Loew rounded this morning Leah looked much better -- this was all before she got sick- and he thought that we could start chemotherapy on Tuesday night or Wednesday. Her counts are up enough now that we are no longer doing GCSF shots, but are waiting the 48 hours after we give our last one before chemo. can start.

Since I am blogging from a computer in the hall, I am working in a hurry. Leah seems to doze on and off and she wants me to be by her every second. Chris is coming tomorrow, and we are still debating whether he will bring Chloe. Leah wants to see her, but if she feels sick, I doubt we will have Chloe come. I will be back in Denver for a bit on Wednesday and then back in Iowa City.

Please pray for Leah to feel better so that we can have our third round of chemo. Also please continue to pray for her treatment to work and for her continued recovery.

Sunday, January 15, 2006

January 15, 2006

Leah has had a fever-free day in Iowa City (knock on wood). She spiked her last fever at 2 AM, at 38.3 (which translates into 101.4). Since then she has not had Tylenol. My mom came down today with her friend, Pat, and she agreed that Leah looked much, much better than yesterday. So far her blood cultures have not grown anything, so we will probably never know why she ran the fever, but that is fine as long as it is gone.

As always, we are never in a rush to get up in the morning. Since Leah was febrile her vitals are taken every two hours. That is a lot of waking up in the night, so sleeping in seems a must. Dr. Loew rounded again today. He has a different manner than the other doctors we have met so far...more abrupt. I had been warned by many parents about him prior to meeting him, so I knew what to expect to some degree. I can understand their perception of him, and maybe because of that, I have not found him hard to deal with. He did a very thorough pushing/pressing/poking of Leah's abdomen today. Anytime anyone touches her there she instantly screams that it hurts. He seems to think that it did at one time, but does not anymore. Granted, he never saw her when she was first diagnosed, but according to him, he was able to push in fairly far on her left side (the side without the tumor). So, even though we know nothing until we have the CT scan, he did not seem alarmed by what he felt today. I have many theories about all of this: even if her tumor is shrinking, her other organs that were squished are moving back into place and taking up the room that the tumor is leaving; her stomach is much bigger because she is eating more; her bowel is also much bigger and can hold more; and we have two more rounds of chemo. to go AND they still have to take something out so it is not going to be normal for a long time yet. We also have many, many people praying for Leah each and every day and believe that God is hearing these prayers.

Today Leah ate an all-time record four blue Trix yogurts. Anyone who has seen these yogurts know how blue they are. I am sure you can imagine that after they are digested and come out the other end, the blue dye has not disappeared. James the nursing assistant got quite a charge out of this. Leah's question of the day was that if she is eating the blue yogurt from the package and giving Grandma and Grandpa the pink package and they were eating pink yogurt, what was happening to them after they ate that? Pretty smart.

Tonight we had another GCSF shot and afterward Leah and I went downstairs to get an ice cream cone as a treat. She wolfed down a lot of ice cream before deciding we should head back up. We are getting more adventurous on our journies and seeing more and more of the hospital.

This morning a gal I went to Wartburg with stopped by to see us. I had not known her at college, but she is down here with her husband, Bruce, who is receiving a bone marrow transplant. He is also on the seventh floor in the unit right next door to us. If you have been reading our blog, you may have seen her post on Friday night. Their website is www.caringbridge.org/ia/bepositive. Please pray for their family as they also go through this fight against cancer. It is amazing how many people's lives are affected by cancer, and how many of them we have met here who are young people --I have been quite naive until now.

Right now we still do not know what the week ahead holds for us in terms of when we can start chemotherapy. We should have blood count results back tomorrow that they will look at and make some decisions from. Chris is still planning on coming down Tuesday night and Wednesday, so I can spend a little time with Chloe.

We are happy Leah has had a good day, and hope for another one tomorrow. Please continue to pray for us each and every day.

Saturday, January 14, 2006

January 14, 2006

I blog tonight from Iowa City. This morning when Leah woke up I thought she felt warm. Initially I wondered if it was because she was in her sleeping bag and was just hot from that. Instead of wanting to be active and eat breakfast, she laid around and went back to sleep and did not really cool off. When I did take her temperature it was 104.2 the first time and 103.6 the second time. So, I called down to Iowa City and talked to Dr. Loew and after packing up, talking to my mom, dad, Esther (our neighbor), and Chris, Leah and my mom and I were on our way.

We were here by noon and they accessed Leah's port, drew labs, and we gave her Tylenol upon our arrival. After meeting the new resident, Dina, and talking with her we went downstairs to have lunch at the cafeteria. On the way down we ran into Dr. DiPaola who had already heard via email that we were coming in. Leah's blood counts seem to be fine, except that she is neutropenic. Her white blood cell count is low, so we started the dreaded GCSF shot tonight. She always want me to administer it, and I am getting better at it, but I dread it right along with her.

I can definitely tell that Leah does not feel well. She did eat today-more than she usually does while at the hospital- but she is quite tired and her eyes do not look right at all. Even this evening her temperature was at 103.5-with Tylenol. She did fall aseep and that brought it down a bit, but it is quite obvious she needs to be here.

Chris had not planned on coming down tonight, so his coworker, Darren, and Darren's family happened to be in Iowa City trying out Hu Hot and they offered to run to Wal-Mart for us to get some supplies. It helped us out a ton to have frozen meals purchased along with blue Trix yogurt. In the end, Chris did decide to drive down for a few hours. It almost seems like too far to drive, but at the same time, it does help pass the time, and Leah enjoys having us both here. Chris is getting ready to drive back now, while Chloe will spend the night at Grandma Karen's.

At this point we seem to be stuck here for quite a duration. Chemotherapy was originally scheduled for Tuesday, but because she started GCSF and has a fever, it is almost certain it will not start until Thursday. At this point it is all a wait and see game.

While we are definitely not excited to be here, we do enjoy seeing James and Kristi who are both working. We are getting to know several other nurses and enjoy visiting with them, too, and always ask if they will be back the next day to see us.

Our prayer requests are many tonight: for Leah's fever to break (and remain gone), for her chemotherapy to work, for her tumor to shrink, and for her doctors and nurses to help her with her healing process.

Friday, January 13, 2006

January 13, 2006

We have had another fine day in Denver. Leah woke up early this morning and had a glass of whole milk, cookie, and yogurt for breakfast. Her big thrill of the day was Mrs. Neuendorf, her preschool teacher, coming and working with her for an hour. She had a lot to report about her letter books and happily showed me her work when I got home from school. Chris worked in the Denver office much of the day, so he was able to see Leah during the day and read her a book before her naptime. Considering she had Vincristine yesterday she had a good day. I do think it tires her out a bit more, and she did have a long nap.

After school I had my parents take Chloe to (in)Convenient Care at Covenant. I hate going there because there is always such a wait, but after hearing from her daycare that she was more tired and did not act like she felt very well (which I also wondered about this morning), I decided she should go in. Enough of the green snot river from her nose. Thank goodness my parents and Chris' parents are around to help us-something we are grateful for every single day. Chloe got a prescription for Zithromax which we had to force down her throat when they got back. Leah even waited to take her medicine until Chloe returned home because she wanted to show Chloe how to do it. Leah did do a fine job modeling this, but Chloe did not take any of her cues.

Leah ate another ton of food today. In addition to her breakfast, she had a grilled cheese sandwich, Kids Cuisine meal, chips, 3 more cups of whole milk, 2 more containers of yogurt...I do think her stomach looks bigger, which is concerning me a great deal, yet I cannot totally discount the fact that she is eating 4-5 times more than she did even a week ago. I would not be suprised if by the time we go back on Tuesday she has gained 5 pounds in a week. Considering she only weighed 26.5 to start, that is a huge percentage increase. I can really tell how much heavier she is when I lift her up and carry her around. The whati-ifs really started to get to me yesterday as I looked at her stomach. We have the CT scan in 10 days, and I want to know NOW if her tumor is smaller. Instead I get to worry for a while (quite unproductive) while trying to tell myself not to worry and let God handle this. So, please pray, pray, pray for good CT scan results.

Right now Chloe is sleeping next to Leah's bed. Up until Thanksgiving when Leah was diagnosed, they both slept in Leah's bed together and cuddled up every night. Leah has always complained about being lonely and Chloe just loves her big sister, so the situation worked well. However, in the interest of trying to eliminate germ spreading, etc. we decided not to let them sleep together right now. This could also be Chloe's bed problem. However, the other night, Leah had fallen asleep in her bed and I was trying to get Chloe to sleep with me in our bed. Chris was still downstairs watching TV-he usually opts to fall asleep on the couch if he knows Chloe is in our bed because she likes to thrash around and sleep sideways leaving no room for anyone in a double bed. Chloe found excuse after excuse to get up and get things. Finally I remember sending her downstairs to get a cuppy. At 3 AM Leah woke up and I went to lay down with her in her bed -but I made sure I did not fall asleep since I was worried Chloe would roll out of our bed and land on the wood floor. So about 3o minutes later I returned to our room and Chloe was not there. This caused me some initial panic-at first I figured she was downstairs and had fallen asleep with Chris. Then I went and looked in her room and she was fast asleep in her bed. As far as Chris and I can figure out, I was asleep when she returned with her cuppy, so she just went ahead to her own bed. Chris was a little annoyed when he realized that he missed his one opportunity to sleep in his own bed. I am thinking I was VERY tired to have missed her returning upstairs. This also reminds me of the fatigue I felt after I had Leah and she was still a little baby and I fell asleep in the bathtub. At that point in my life I had never experienced such fatigue.

Chris is on call tonight and Sunday night and I have nothing on my agenda. We have Monday off from school for Martin Luther King Day, but as of now I plan on taking Leah to preschool. She has had two opportunities to play with friends and both were OK, but I have noticed more recently that she opts to watch a great deal and would prefer to converse with the adults. I am not sure if that is because she has her ears pealed and wants to know what we are saying about her, or because her life is so different from those of her peers right now. She does talk about school a lot, though, especially going for Conner's birthday. And, she is also concerned with the treat schedule because she would really like to bring some.

Leah's quote of the day was recalling Grandma Karen preparing Chris' lunch. She was chuckling out loud as she told me how Grandma had asked "Chis" if he wanted to eat in the living room, but he told her he could eat in the kitchen. "That was kite (quite) hilarious." (I think something was lost in the translation). She also "read" an Arthur book to us (this can go on for hours at times) about Binky Barnes being called a pickle head. Tonight her reading consisted of Arthur replying by saying "b-b-b-but" with a stutter--she really gets into her books.

We all continue to see more and more people wearing Love For Leah bracelets. Sara is quite the salesgirl, and we are happy so many people are thinking about Leah--and praying for her. We continue to need these prayers for the upcoming weeks, and even months as Leah continues in treatment.

Thursday, January 12, 2006

January 12, 2006

Our Iowa City trip was very fast and uneventful today. We were on the road shortly after 5:30 AM. Chloe woke up happily and announced "bye-bye. Owie," which pretty much sums up the trip for her. Leah was up right away, too, and even asked for her medicine. She still does not like taking medicine, but we don't have tears about it at all, and she just takes it quickly and then has a drink.

We had our usual stops to put on Emla and then breakfast in Iowa City at McDonalds. The big news is that Leah gained 2 pounds since Monday. She is back up to 28.5 pounds. Her eating today makes me think that by the time we go back next she will be up at least 2 more pounds. (Her diet consisted of a pancake, 3 cookies, Hu Hot, yogurt, 3 cups of whole milk, a spaghetti frozen meal, Krismar chips, and anything else that looked good to her). Her port accessed easily and had blood return, we met with the nurse, and Dr. Rahdi, and we got her lab results back. Her blood counts continue to be good. The plan is that we will go down on Tuesday to be admitted for chemotherapy and if things go as planned, be released on Thursday morning. It does appear that we have escaped the dreaded GCSF shots. Her hemoglobin which was 7.7 before her transfusion is now 10.3. Dr. Rahdi enjoyed the Dora stickers we brought him-since he does not seem to remember any for Leah. And, we gave out a few Love for Leah bracelets as well. The last thing they did before they de-accessed her was to give her Vincristine, and we were on our way by 9:30. The most stressful part of the day was the knock down, drag out fight the girls had on the elevator over who was pushing which button. There was a little hair pulling involved and screaming, too. Obviously this was one or our prouder moments as parents.

Of course we had the usual Prairie Lights stop and Hu Hot. We also took a detour through the Amana Colonies, something I enjoyed, but which the girls were completely oblivious to. We had a visit to Grandma Kathy and Grandpa Daryl's house tonight to bake cookies, and tomorrow I am back to school.

After we returned from Iowa City I was able to check a care page site for a boy we met in Iowa City before Christmas. He was in Iowa City, too, today for a CT scan and had great news. The tumor that doctors had not given his parents much hope for has decreased dramatically in size. Knowing the odds that the parents were given, it is impossible not to see God's hand in all of this. We continue to pray for God's hand to help Leah's healing as well.

Tonight Leah is helping me type and wishes to add a few comments of her own (you will understand this message if you are fluent in Swahili, perhaps):


One other bit of trivial information: Chris completed his jigsaw puzzle that he claims is far harder than the Charles Wysocki's we usually do. Within a day of completion two little girls had a great time giggling and screeching as they pulled the entire thing apart. He claims he is ready to start a new book, so instead of staying up until all hours working on the puzzle, he can do some reading. I am putting in a plug for the book blog I write for the Des Moines Register-my latest blog is mentioned on the Register's homepage, so Leah got a kick out of seeing that and looking at the pictures they added to it this time.

It is bedtime here now. Since this goes on for hours, we need to get started. Please pray for Leah's chemotherapy to be effective and for her continued healing.

Wednesday, January 11, 2006

January 11, 2006

I am sure it won't last, but right now both girls are in their respective beds and I am not being asked to lay down with either of them. I am actually very tired tonight, so if I would take a minute to rest, that would be it for the night.

We will leave tomorrow around 5:30. All of us are planning on an Iowa City day. Leah seems to be getting more used to the idea of going down there and at least seems to be satisfied with this as long as we plan on returning the same day. She is also looking forward to helping Chloe at Prairie Lights. I am curious to see what the blood counts are. If we start GCSF shots tomorrow that pushes her next inpatient chemotherapy back a few days. Their clinic is closed on Monday for Martin Luther King, Jr. Day, so we would be giving GCSF until at least Monday night. At the very earliest chemo. would then start on Wednesday.

Leah has been waking up before I leave for school. This way I can give her her medicines and breakfast. This morning she had a cup of whole milk and 2 containers of yogurt. She ate an entire grilled cheese sandwich for lunch and two small Reeses peanut butter cups. When I came home I brought a Burger King kids meal for the girls and they both ate a portion of that. Leah did not eat tons, but as soon as she had her last bite of that, she needed a snack. She followed up Burger King with a cookie, container of yogurt, and another cup of whole milk. By 6:30 she was ready for supper and had a spaghetti Kids Cuisine meal. Before bed she had part of a piece of pizza, another Reeses peanut butter cup and another glass of milk. It is just amazing how much food she can eat right now. I am thankful for each and every bite because I have heard of many children undergoing chemotherapy who have to receive IV nutrition. While I do believe there will be times she does not feel like eating as much as she does now, at least she is gaining a little bit of weight so if she loses a few pounds later we won't be further down than we were a week ago.

Leah was tired tonight, and I do wonder about her counts, but she also managed to play DJ with us. We got out our mini-trampoline and she and Chloe took turns jumping and running around in circles (I got to take turns, too). When they do this they have some favorite songs they always request: Video Killed The Radio Star, Celebrate, 9 To 5. We have decided that Leah's nurse, Tom, would like the name Tommy TuTone--one hit wonder of 8675309. Leah has been busy learning the words to the song so she can sing it to him tomorrow. I doubt she will perform when asked, but she does definitely enjoy doing so at home.

Chloe has been her usual crazy self and after Leah watched her tip her little chair over several times and land right on her face, Leah looks at Chloe and says, "That child is insane."

We enjoyed watching the DVD of Leah's preschool class that they made for her before Christmas. I felt a little sad seeing all the kids there without Leah, but she liked the songs and especially hearing them say her name. The DVD consisted of Christmas songs, a story and calendar time. We watched it three times tonight and each time Leah commented on how she could hardly wait to see the bathroom break part on TV. What a thing to look forward to. Of course that part never was even filmed.

Each time we go to Iowa City I am nervous for her appointment. Considering we just saw Dr. Ellen Sarvada and Dr. Rahdi on Monday, I doubt there will be a lot of news. However, I am praying for as much good news as they can give, for the tumor to shrink, for chemotherapy to be working and for Leah's counts to be high enough to continue chemotherapy next week. As always, please continue to pray for Leah, too.

Tuesday, January 10, 2006

January 10, 2005

I almost did not post tonight, but since I know many people check this blog every day (something we are very thankful for), I felt the need to reassure you by posting that we are still here in Denver, and things are going along nicely.

Leah woke up full of energy this morning. She had a very long afternoon nap while I was at school, which makes me wonder if her counts are going down yet, and asked to go to bed early tonight. However, we started bedtime at 7:30 and she was still up at 10 wasting time.

Chloe has developed a nice, green snotty cold. Yuck! Exactly what we don't need. She is getting some eye teeth and is cranky, and very much wants Mommy. This is hard work because both children seem to need me all the time right now.

I did not go to school until noon. Leah got up by 7 and devoured a yogurt and drank a cup of whole milk. By 9:30 we were making pancakes for her second breakfast. Then when I left she was getting ready to eat macaroni and cheese. After I got home she ate another yogurt, a piece of pizza, more milk, Krismar chips, a cookie, and piece of bread. This hardly seems like the same child we were fighting with about eating last week.

Leah's first babysitter, Marlene, came over and brought each girl a Christmas present. It was good to visit with her. Leah still talks about her and remembers quite a lot of her days at Marlene's house.

Tomorrow I am at school all day. Thursday is another chemotherapy treatment in Iowa City (just a day trip). Chris happens to be off so we are all going down there for her appointment, going to Prairie Lights and then Hu Hot. If she has to go through all the poking and prodding at her appointments, then these small treats are at least something happy to look forward to.

Our Leah moments of the day were while we were making pancakes today. She has always enjoyed this, and it is something we have usually done every Saturday morning. She and Chloe were busy waiting for Chris to get milk at the store, and Leah was gently tapping each egg on the counter. Chloe was not so gently doing this (her eggs were the ones we had to use up). After I broke the last one and was fishing a shell out, Leah was watching me do this, "Oh my honkin' gosh, Tina," was her response to my mistake of having a shell drop in the egg.

Earlier while taking her two icky medicines she mentioned to me, "God needs to help Chloe take her medicine better."

We continue to pray for Leah's medicines to work, for her tumor to shrink in size, and for her doctors continued efforts in helping her healing.

Monday, January 09, 2006

January 9, 2006

Today we spent all day in Iowa City. It was nice to sleep a little later than our Thursday Iowa City days, but we were on the road with Grandma Karen by 6:45 AM. We did our usual North Liberty stop to put on Emla cream and then ate pancakes at McDonalds in Iowa City. Today Leah's port accessed quickly and she had her labs drawn right away. She still hates to have her port accessed, and there are tears involved. It is a small world because our nurse today mentioned Denver, which eventually led her to tell me that her best friend is Theresa Sampson. Suzanne and I used to babysit for the Sampson kids when they were little and lived in Readlyn.

After labs were drawn we were told to waste at least 30 minutes and then return to find out if she needed blood. We decided to go to 7th floor and saw James who was busy(?) working. We also visited Michael and met his mother. He is still planning on going home on the 11th but as his mother says, she won't really believe it until they say goodbye.

When we returned we found out that Leah's hemoglobin was at 7.7. They transfuse below 8, so I am glad we brought her in, although there are many people who go much lower than 7.7 before they receive blood. The rest of Leah's counts continue to look good. We will find out again on Thursday where her counts are, but for right now, we do not have to do a GCSF shot. This was great news for Leah today. I never knew how long it took to prepare blood after they cross and type it, so we waited, and waited, and waited. Eventually we went to the cafeteria and had some lunch. Finally just before noon they started her blood. In the clinic they have infusion rooms. These rooms had four recliners in them and two televisions. When we returned for Leah to get hooked up we met another girl, Stephanie, and her dad. Stephanie was being hydrated to receive chemotherapy and then radiation today. She was diagnosed with Ewing's sarcoma in her sinuses when she was ten, and relapsed this year with a tumor on her spine. This chemo. and radiation is part of her therapy, and she will also undergo a bone marrow transplant--that means 4-6 weeks in isolation. Her dad and I had a good visit. It is amazing how much these contacts with other parents mean to all of us. As her dad said, it is so hard to believe this is happening to you--it is the last thing in the world you ever expected to take place in your life.

Going in for blood and labs means that there is no scheduled appointments with doctors or nurses. However, Dr. Sarvada made sure she saw Leah several times. We were giving her a hard time about going to HuHot and decided if Dr. Rahdi does not bring Leah a Dora sticker on Thursday we are going to tell him that we are taking her to lunch. When he visited later I told him the plan. He asked if he could be invited, and I explained that he could go if he had good news for us on Thursday about us not needing the GCSF shot this round. I think he does not quite know what to say to me, but he does take all the teasing I give him very well.

Dr. Rahdi also visited with me about the AFP numbers that have had me worrying for days now. I believe his exact words were "you don't need to freak out." Normally they do not check the AFP until after four rounds of chemotherapy, but they did check hers to make sure it is responding. Because it is normal to wait until after four rounds, the data is not there to know if AFP declines quickly then tapers, or goes steadily, or what the pattern is. So, for right now, I will have to stop worrying about this. Even though I realize worrying is unproductive, and God is the one in charge, it is hard not to fixate on these things because we are praying so hard for God to work a miracle.

And as for Leah's appetite...it is amazing. She did not really show weight gain today--she weighs all of 26.5 pounds according to them. However, she had pancakes for breakfast at McDonalds, 2 cups of whole milke, M&Ms, part of a chicken strip, french fries, a hunk of cheese, some HuHot, Krismar chips, a piece of bread, 2 cartons of white milk, and a yogurt. I am definitely seeing a dramatic improvement.

Earlier tonight Chloe was busy harassing her sister. She has small plastic utensils in our little play kitchen she was running around chasing Leah with. Leah is yelling at the top of her lungs, "Chloe stop attacking me with a table knife!" Leah has also been busy ordering new DVDs from Amazon. She knows how to work the mouse enough to click on DVDs she wants and place them in our cart. Where do you think she learned this?

I am working tomorrow afternoon and Wednesday. I even managed to get a new book blog emailed in for the Des Moines Register tonight. However, this means that neither girl has thought about bed at all. I thought we did so well last night with Chloe falling asleep on Leah's floor, until Leah woke up screaming and they both were up. Then we were back to the musical beds routine.

We are thankful for each and every prayer being said for Leah-and the fact that so many of you pray every single day. As we have been told many times, this is a marathon, so prayers will be needed for a long, long time. Chloe's prayer each night sounds like this "peese, Lah, tummy, ow, Men." I am sure God understands perfectly.

Sunday, January 08, 2006

January 8, 2006

I can hardly believe that the weekend is over already. I worked at the library yesterday morning. Chris watched the girls at home and then he and his friend, Brian, did some chores around the house. Brian has called volunteering his services for a while now, so Chris took him up on his offer. Leah and Chloe also both loved Brian who has some kids of his own. Today Leah was still full of information about Brian and his family.

Leah has been more tired the past two days. However, even though she did have a nap yesterday and does tire out, she rode her bike outside for a while. We also got in a stroller ride up to see GG at the Sunset Home and she helped Grandma Kathy take her tree down. Her friend, Jaden, came to play, and that was the one time that you could really tell how tired she was. She also fell asleep with Chris in a chair watching TV by 7 PM.

Today she is even more tired. I am sure she is neutropenic. So, I called down to Iowa City and we are going down there for blood tomorrow. Normally we would go to Covenant in Waterloo for a blood draw, wait for the results and then find out if we needed to go to Iowa City. Since I am back at work I know they would not have the results to me until I was at work, and even last Thursday they mentioned that she would need blood by Monday. I am eliminating the finger poke so we can go right down to Iowa City and have her port accessed. It is not much comfort, but as many finger pokes and other dreaded procedures that I am able to eliminate, the better. We will have our labs done there, and I am sure that we will be giving the GCSF shot again. We have talked about this a bit with Leah and she gets a bit teary-eyed when we bring it up. I know they are painful. Esther, our neighbor, will come over and help us out for the first few times. Thank goodness we have so many friends and family members that have helped out and continue to volunteer to do so! There is no way we will ever be able to repay everyone for their kindnesses, but it is something we marvel about every day, and vow to do for others someday,

Leah did manage to get to Grandma Kathy's again today and walked to the grocery store with my aunt and uncle, Carol and Mike. She had some specific requests: peanut butter M&Ms and Krismar chips (really they are just small circle tortilla chips, but she named them after the friend who brought them). Leah's appetite has really taken off. She seems to love yogurt right now. Today she had 3 containers of Trix yogurt, 3 cups of whole milk, quite a few tortilla chips (at various point during the day), two taco salads (meat, cheese, chips, and dressing-but no lettuce), macaroni and cheese....this is sooooo much better than fighting with her about food. She always has a request for things now and is ready to eat before I can bring it up. I am hoping she will gain some weight, so even if she has no appetite for a bit after her next treatment, she will not be losing ground.

Chloe is on her 3rd night without her pacifier. This is quite a feat because she is very obsessed by it. Her new bedtime problems have made her forget it a bit, though, and the one night last week she slept with me I noticed it in bed with us, but not in her mouth. We honestly could not find one a few nights ago, so we just never brought it up, and she has not, either. We have whispered about this with Leah, who has explained to Chloe that if she can get rid of that paci, she will buy her a treat.

While I cannot say there are any benefits to cancer, I can say we appreciate each and every sweet moment we have with both girls. Some of those moments include some funny comments from Leah:

Yesterday she was in the bathroom with the door shut. I thought she had gone upstairs, so I opened the bathroom door. She screamed and yelled about this for quite a while, and was still going on about it later that night. "Tina. You are breaking the bathroom rules. Don't you know? I need privacy. Arthur told D.W. this, too."

Leah happened to bring up when Chloe was born and how she was in my tummy. I asked if she remembered that, and she said she did. I told her that my tummy was big when she was in it, too. I have a hideous picture I had Chris take the morning we went to the hospital to have Leah. I dug it out and showed it to her. The look in her eyes was priceless-disbelief and shock. The best part is that she then starts in with, "My tummy was big when I had Bitty (her Bitty Baby), too. That was a couple years ago..."

I definitely am not looking forward to another Iowa City day. I guess we should be thankful there have not been many lately. Leah does not want to go, either, but happily stated that afterward we would be visiting Prairie Lights and Hu Hot. It seems that is her new favorite place, too. At this point I feel like these small treats are the least we can do after all the things she does not have a choice about enduring.

Yesterday I got the chance to visit with the Hunemillers at the Janesville Library. Sara is doing a booming business with her Love for Leah bracelets. She will soon have sold 500 of them. Vickie says that you can still email or call if you are interested in buying some. Leah is definitely noticing people who are wearing them and comments on this when she sees them.

I am happy both girls are sound asleep already....Leah was easy, but Chloe, who has been giving us fits, fell asleep on Leah's floor. I left her there for now, but may have to come up with a better plan.

Pray, pray, pray. For Leah to have courage in Iowa City, for her chemotherapy to work and her AFP to continue to decrease, and for her tumor to continue to shrink in size. The CT scan is two weeks from tomorrow. I have started to pray about this already.

Friday, January 06, 2006

January 6, 2006

Leah was quite tired today. I am not sure if it is chemotherapy related or because her counts are continuing to go down. I will need to take her in Monday for a finger poke, but may have to before then if she continues to be so tired. However, I have analyzed this and since she HATES finger pokes I don't want to take her and have her counts be too high for them to give her blood, and then have to take her within the next day or two for another poke. When I take her I want to be fairly certain this will be the only lab draw they need to do.

Karen's day with Leah consisted of rocking her, a two hour nap, and not much energy. She really turned it up a notch for me when I got home and played, interacted with us all, joked around, and even ate. She was tired quite early, though, and begged to go to bed.

I still would not call her appetite good, but today she requested food. She had two whole cartons of yogurt, 2 cups of whole milk, some white grape juice, 2 small Reeses peanut butter cups, half a grilled cheese, part of a taco salad, and right before bed decided to eat some chips. She asked for lunch, supper, and both snacks before we had to prompt her, so that is good news.

We had some friends bring us our supper (that is something we could get used to!) and after they went across the street to eat at the Rite Spot, we had them come in and visit. Leah was not much for playing, but Chloe enjoyed their boys, and they liked our Dora house.

While Leah was eating her chips before bed, Bernie, our dog was patrolling the area closely looking for food. Leah yells, "Bernie, dogs do not eat table food! Well, except for that dorky dog of Karen's (grandma's) who always barks at you, Tina. She always tries to get food." Leah still enjoyed sharing her snack with Bernie.

Our weekend plans are not exciting. We need to get the Christmas tree down, and I am planning on working at the library. Leah thinks that is a fine idea. Every single day is so dependent on how Leah feels, that we shall have to wait and see.

As always, please pray for Leah.

Thursday, January 05, 2006

January 5, 2006

I may be doing the fastest blog ever tonight. It is after 10 and for the third night in a row Chloe is not going to bed. She cries and cries when she is put in her bed, which I can only listen to for so long, and which also wakes Leah up. So, she is hanging out downstairs 'til way too late. She has always been a great sleeper, so part of me wonders if she is having some issues with lack of attention right now. At this point, if she wants to sleep in our bed, I won't complain. At least we will all be getting sleep. Some nights I play "musical beds" and start with Leah until she falls asleep, then to my own bed, then to whoever wakes up, then back to my bed, then to another child's....

Our day in Iowa City went well, aside from the AFP result. We did not get that number until Dr. Sarvada called us on our way home. Her AFP is now at 189,000. It did go down, so that is positive, but it did not go down by much. Chris and I have been on some different forums for hepatoblastoma parents -they are interesting to read, and apparently an AFP reading one week that does not decrease does not necessarily mean we should despair. Of course this will be a high priority to discuss next week.

Suzanne, Leah and I left at 5:30, which used to seem like a decent hour back when I had a normal life and was able to exercise each morning at that time. Now I can barely hold my eyelids open. We stopped at the North Liberty exit to put Emla on her port and then had breakfast at McDonalds. We were lucky enough to have Tom as our nurse again. Leah likes him-but not when he has to touch her. After accessing her port he was not able to get a blood return, so we had to wait for TPA to be administered and sit in her port for an hour. During this time we read books, played school (Leah did quite well, but Aunt Suzanne had a little trouble with my curriculum), and tried to amuse ourselves in any way we could. Once the hour was over the port worked quite well, Tom took blood samples, administered Vincristine (which happened so fast I missed it entirely), and we had another hour to waste until the lab results came back. We visited the 7th floor and saw Kristi, Leah's nurse. We also visited with Michael who is still in the hospital. He had surgery last Friday and will be there until the 11th. James was working, too, so we had fun picking on him for a bit.

Dr. Rahdi visited us while we were at the clinic, and I admit he is growing on me. He had promised Leah a Dora sticker one time when he saw her so I hit him up for it as soon as he walked in the door. He did not have one and did not know quite what to say. He has a 4 year old daughter-I asked if her name was Muhammadette after him--but she is named Danya, and is also a Dora freak. Next time we will have to bring him some Dora stickers to hand out since he is falling down on the job. Overall he and Dr. Sarvada were encouraged with how well Leah has tolerated chemotherapy. He tried to get Leah to give him five if they were friends, but she was having none of that. Maybe someday.

When we returned to the clinic I thought that Leah would need a transfusion because she was anemic. However, her hemoglobin is at 8.3 and they don't transfuse until it is below 8, so we were able to leave as soon as her port was deaccessed. It is quite likely Leah will need blood by Monday when I take her in. In fact, she may need to have labs done this weekend if I notice her becoming too lethargic.

Leah had requested a trip to Prairie Lights book store and raked in a few new books. She ate at McDonalds-2.5 chicken nuggets and 10 french fries. (Leah is down another 2.2. pounds. :( As Dr. Rahdi pointed out, at least she is not vomiting because that would mean she would need to have IV fluids for nutrition). Suzanne and I held out for HuHot, my new favorite restaurant that I highly recommend. Leah enjoyed watching them cook our food and even decided to eat a few more bites there. Suzanne and Leah picked out food to bring back for Chris so he could have a treat, too.

We were home in time to pick up Chloe from daycare and then visited the Janesville Library and Grandma and Grandpa Behnke for cookie baking.

This was not the short blog I intended. Chloe is happily playing with the Dora house Santa brought, but I am ready for bed. We are praying for MUCH lower AFP numbers next week, and hope that many of you continue to pray each day, too.

Wednesday, January 04, 2006

January 4, 2006

No news is good news, I guess, and today I have little to report. It is late and I have not packed for Iowa City tomorrow. We leave at 5:30 AM, and it should just be a day trip. However, they have told us to always pack for overnight just in case. That would be a huge bummer because Leah has a visit to Prairie Lights planned out and maybe even the mall. I tried to tell her we could go to a fun restaurant that was really good-she insisted on McDonalds when she heard that idea. Leah was tired tonight by 8:30, but ran around more than she has in quite a while. I still would not characterize her appetite as good, but she ate as much spaghetti from a Kids Cuisine frozen meal for supper as she did all day the last time she had one. She also had a little bit of a Dairy Queen Blizzard (thank goodness there is one directly across from my school), half a grilled cheese sandwich, and half a container of yogurt. She also had two cups of whole milk, so even though I thought she looked verrrrry skinny while she took a bath-think chicken legs-she is eating.

She and Grandma Karen worked on some different projects: finger painting with pudding, practicing lacing, taking the Christmas ornaments off of the tree. They seem to be getting along well. I enjoy the fact that the house is picked up when I come home. Of course it is destroyed after the girls, Chris, and I spend an evening at home, and I am sure when Grandma arrives in the morning she wonders what in the world is going on at our house.

Tomorrow we will get her blood levels. I am concerned about them all, but especially am praying her AFP has taken another dramatic hit and decreased significantly. Please include Leah in your prayers once again - for a decrease in her AFP and for a positive doctor's report as they continue to monitor her progress.

Tuesday, January 03, 2006

January 3, 2006

I survived my first day back at school. While I did find it quite difficult not to be thinking about Leah the entire time, it is probably good for me if I can be away some of the time. Still, I did miss her and Chloe a lot. However, when I called Leah did not want to talk to me because she was plenty busy doing other things. Grandma Karen appears to have survived her first day taking care of them both, too. Chloe will still be going to her daycare, and Karen will be with Leah, although if Leah feels well enough and her counts are good, she may go to preschool sometimes, too. Her teacher dropped off the January calendar tonight and Leah looked it over to find out when things would be happening.

Leah appears to have had another great day. She did seem to eat about as well as yesterday-which is not setting any records, but is not horrible. It would be nice if she would initiate the eating (or interest in eating) on her own instead of having us badger her each time we have a meal. She and Chloe are on no good schedule-they can make bedtime last for hours. At almost 11 o'clock last night Chloe was sitting up in her bed making goofy faces when I looked in. Leah was still awake in her bed and heard me laugh, so came running to Chloe's room to see her sister. The two of them ran around laughing for a while after that. I thought they would sleep in, but Leah was up by 7 AM, and only napped for an hour. She may be anemic, and need a blood transfusion, but anyone who did not know her wouldn't guess this at all.

Tonight I took the girls to the Sunset Home in Denver to visit my grandma. The girls visited GG (great grandma) every day all summer long-sometimes twice a day. This fall when school started we did not visit quite as often, but since Thanksgiving we have been infrequent visitors. Leah and Chloe both enjoyed seeing everyone - after visiting there so often we know many residents and staff there. One of their favorites is Sarah who has two girls of her own that happen to be Leah and Chloe's ages. GG said our visit was the best surprise of the night. We will take this as a compliment even though I am sure we were the only surprise of the night. GG turned 90 on Christmas Day, and if you can believe this, I don't think she looks a day older than the last time we saw her.

We continue to look forward to emails and phone calls from our friends and even from new acquaintances. We have received several emails from people in New Sharon, Iowa, who are also praying for Leah. This extended support we continue to receive helps us know that there are many people out there that are praying each and every day for Leah, and continues to encourage us. Our prayer requests continue once again-for Leah to be returned to health, for her chemotherapy to continue to work, and for her strength of spirit as she endures many different medical procedures.

Monday, January 02, 2006

January 2, 2006

Today is my last day of Christmas vacation. I am working tomorrow for the morning and then will be back with the girls for the afternoon. It will be good to have some different things to think about, but I am not looking forward to the first day back. I am sure I will have more than a few books returned, and since I have classes back to back all morning the idea of checking them in and being ready to teach sounds rather challenging.

I made Leah's requested meal today and she did eat that fairly well. She was quite pleased with herself, too, so she now thinks she deserves a new DVD. She does not request anything to eat at all, but at least she is slightly more agreeable about the idea of food.

Chris' mom is coming to take care of Leah tomorrow. She took a leave of absence from her job to help us out and take care of Leah. I also have several other projects-like taking down the Christmas tree- that I hope to have her help with.

Thursday is our Iowa City appointment. I see that snow is forecast for Wednesday, so I am hopeful that it will be out of our way by the time we leave Thursday morning. I have already constructed a fairly lengthy list of questions for Mary in the Middle when we see her.

Bedtime is approaching and I need to lay a few things out to take to school. Continue to pray for Leah and her return to health.

Sunday, January 01, 2006

New Year's Day

We can check off another day on our calendar as one we were able to spend at home. Leah still seems to be feeling much better after this round of chemotherapy than she did after the first one. There has been no vomiting since we stopped the dexamethazone and she has talked constantly the entire time we have been home-very much like her normal self. She did not sound very thrilled to know we would have to go to Iowa City again on Thursday. I have started talking about these trips a few days ahead of time so that there are no big surprises and she knows generally what to expect. That is how Leah has always been with everything, so preparing her for upcoming things is not a change. I would not say she did a good job of eating today, but she did manage to eat 2 small Reeses peanut butter cups, half a piece of bread, much of the spaghetti portion of a Kids Cuisine meal, one M&M, a chicken nugget, and a restaurant packet of sour cream, along with 3 cups of whole milk. That is better than yesterday, and we hope tomorrow she will do even better than this. She requested I make the chicken stuff that Nolan's mom makes in the crockpot, so I will dig out my friend Kristin's recipe tomorrow morning. This comment is the first she has made about something actually sounding good.

She also made another comment that makes both Chris and I think a bit, and wish she would have been able to verballize this a few months ago. She commented tonight that when she was three her babysitter helped her in the bathroom, but when she turned four she had to start doing things herself -one of those things being pulling her own pants and underwear up. She told me that she did not think she could go back to daycare because she always had to do that there and it hurt her so much to bend over like that. Hmmmm......if only we had known or noticed. Yet we can clearly see that her tummy grew so rapidly, even from Halloween and Chloe's birthday to when I took her in before Thanksgiving, that this discomfort may not have been occurring for long.

On a funnier note, tonight Chris was asking me the name of the nurse who told Leah that b-r-a-s were called "b-o-o-b c-u-p-s." He spelled the entire conversation out to me since this is nothing we need Leah to know about. She promptly responds with "boob cups! I can spell, you know!" I am not sure exactly how she figured it out, but it is certainly impossible to pull anything over on her. (My mom also knows how hard it is to trick her. She put a spoonful of Ensure in Leah's milk to give her some more calories. One sip was all it took for her to know something was amiss, "It tastes like lemons." A brand new cup of milk had to be poured.)

Our other "normal people" activity of the day was visiting the Janesville Library. I work there so I have a key and that way we were able to check out another stack of books to look at.

Chris and I are spending another evening working on a jigsaw puzzle. This seems to be a good activity for us when we are stressed out or bored. There is not a good place in our house to have this set up, since the card table takes up a good chunk of the girls' play area, but that is the only location we have. We started the puzzle last night with my brother and sister-in-law, and it is rather addictive.

Leah's next treatment (aside from the weekly Vincristine treatment) is scheduled for January 17. A CT scan is scheduled for January 23 to check the tumor's size. They are already planning on at least four rounds of chemotherapy, but want to check it to make sure it is shrinking. The time frame for much of her treatment is subject to change a bit because of her blood counts, tumor size and changes, and other variables. After they think the tumor has shrunk enough they plan to resect her liver and take the tumor and a portion of her liver out. They can take as much as 50% of her liver if needed since the liver is an organ that regenerates. Obviously, the less they feel the need to remove, the better. There are many different scenarios that could play out. The best one would be that the tumor shrank enough to make resection possible, and the worst is that she may need a liver transplant. In any event the tumor needs to shrink a great deal before they attempt to remove it since it is so large removing it at it's current size would be very risky. If they are able to resect it (which is their plan at this point) they then will start more chemotherapy in an attempt to make sure that all the cancer cells have been destroyed. To us, this means that we have just started this long journey to restore Leah's health. It also means we will need your prayers for many, many months.

Please remember Leah in your prayers each day, especially as the date of her CT scan is fast approaching and we are hopeful for positive news-that the tumor is shrinking quickly.