Day 4: Universal Studio's Islands of Adventure

Today was another big day. We spent the whole day at the Islands of Adventure in Universal Studios. It is another huge park, similar to Magic Kingdom in that there are rides and attractions everywhere. We spent much of the morning in the Dr. Seuss themed park, had a huge lunch at Bubba Gump's and then headed into the Harry Potter and Jurassic Parks. The Harry potter park was amazing and the rides (3) were terrific. Katie found another roller coaster that she absolutely loved, called "The Flight of the Hippogryph". We rode that 6 times. Josh and I also discovered the Harry Potter simulation ride where you fly over, around, and through the Hogwarts school on a broom. This was the one ride that has come the closest to making me sick. It was also so realistic that Josh was afraid to go on it again. But WOW! What an experience. 

We finished the day by getting absolutely soaked on a couple of different water rides and then heading back to our villa for some pizza. Tomorrow, we head to Sea World!

Birthday Surprise

Today is Katie's birthday, but the surprise is on all of us. Just before midnight last night, Katie began vomiting for no apparent reason. It continued through most of the night as Amy and I lost count of the number of trips that we made to the bathroom with her. I think the last trip was some time after 3am.

We slept as late as possible this morning, but a birthday breakfast at the local diner is, at the very least, postponed because when Katie did wake up, she woke up with an extremely low blood sugar and needed some food in her system ASAP. She is currently in the tub, washing away the smells of her late night activity and trying to perk up enough to enjoy her birthday. With any luck, her sudden nausea is a fluke and a momentary inconvenience instead of the beginning of something bigger.

She did receive her treatment, including an LP, last Thursday. At the time, the doctors noted that she had gained a pound and grown an inch which pushed her into the next steroid dosage category. They doubled the dose of steroids that she had to take for the next five days. We didn't see any noticeable gain in side effects except for her hunger, but who knows... Maybe this is related. She has, after all, been eating enough for a person twice her size for seven days now. Maybe her body just couldn't hold any more.

As we look forward to the rest of our day, our fingers are crossed.

Hungry Day

Katie and Amy are off to Fletcher Allen this morning and Josh and I are at school. I'm in a study hall right now, updating the blog. Katie is getting her first chemotherapy treatment as part of maintenance today and it just so happens that it is a treatment requiring a lumbar puncture so she will be getting some anesthesia again. That means no food. However, she was great about it this morning. She woke up early enough that she could still drink so she sat around this morning sipping on a juice box contentedly. Hopefully today's treatment doesn't break the streak of really good days that she has been having.

Climbing Numbers

After school yesterday, Amy and I took Katie to North Country Hospital for a finger pick blood test. Those test results were sent to Fletcher Allen and this morning Fletcher Allen called us with the update. Katie's numbers are headed in the right direction. Her ANC is up to 300 today from the 100 it was hovering at Tuesday. Her Hemoglobin is up to 9.1 and her platelets are up to 108. That means she will not need a transfusion at all this week so we won't have to take her back to a hospital until a week from Tuesday. Thats when her blood counts will be done again to make sure that her counts are high enough to begin maintenance treatments. We could have started maintenance this very next week, but they asked if we wanted a week off and I took it. One week won't make much of a difference if it is added to the end of this next two year process, but it will make a big difference right now.

Katie is doing great at home. She is eating better, she is playing more and she is walking again. We are still sorting out the constipation issues. She is on a daily dose of laxatives, but sometimes several days go by with no poop and then she will go six times in one day (all liquid) and then stop again for several more days. We are having a hard time making her regular again.

In addition to giving a Katie update here today, I would like to take this opportunity to say hello to Mollie and Sarah. Mollie is 4 and she was just diagnosed with ALL in June. She and her mom have been reading this blog and have created a blog of for Mollie at www.allaboutmollie.blogspot.com. Amy and I will be sure to check it out.

Late Night Update

Katie has had her transfusion. We also got her blood counts back and found a very disappointing ANC of 20. She is feeling fine. In fact, she stayed up late waiting for a transfusion to finish that didn't get started until 8pm. She seems fine except for the fact that she didn't eat a single bite of dinner and I put all sorts of food in front of her. Hopefully she makes up for it at breakfast.

Amy and Josh are staying with Amy's parents tonight so Katie and I have the comfortable and spacious hospital room all to ourselves. She has just fallen asleep and I am going back to join her.

Morning Sugar Levels

There isn't much news to report this morning other than Katie's blood sugar levels and her general health before heading to Fletcher Allen. Her blood sugar level was 85 this morning, which is the highest reading she has had since we started measuring her levels last week. That could be due to the fact that she had a big past snack at 9 o'clock last night or it could be due to the fact that I just opened a new bottle of test strips and this was the first test with the new strips. Time will tell.

Katie was feeling fine this morning, and after coming to terms with the fact that she couldn't eat breakfast, she headed off to Fletcher Allen in good spirits. I stayed home to work on the floor with Larry. Already the floor is a lot further along than where I left it last night. It took him about 5 minutes to solve the problem that stumped me last night.

The Morning After

Josh's birthday party was a great success yesterday and Katie was able to enjoy it all. She felt fine all day.

She woke up this morning with a blood sugar level of 71 and she was feeling shaky and very irritable. After a little juice, she was fine. Since then she has been eating left over Chinese food, clam chowder and other non-standard breakfast foods. The rest of the day should be a pretty low key day since we are all tired after yesterday's festivities.

Good Morning

Good morning everyone. Katie is up and doing fine this morning. No nausea despite the new drugs in her system, and no complaints. Her blood sugar measured 66 when she woke up and since that time she has been eating this and that in a mini browsing session rather than a sit down breakfast. She specifically requested the deviled eggs that are visible in the background of the picture posted as part of today's blog entry.

Her doctor called this morning too and gave me an update on her foot x-rays from yesterday. Everything appears to be normal except she thinks there might be evidence of an earlier stress fracture which has healed. That was surprising to her and I since Katie has never complained of any pain in her foot until now. I also asked about the fluctuating ANC numbers when I talked to her this time and she explained that differences like that can happen in patients and that it could also be a result of different labs testing the blood. Either way, the lowest reading was still above the cut off for treatment. That is why we were cleared for treatment yesterday.

The next challenge of the morning will be to get her into a tub. Bath time has become more and more of a struggle for some reason and baths or showers are never welcome any more.

The Promised Details

We are finally home 12 hours after leaving the house this morning. It was a long day, but it went well. Katie didn't have any low sugar problems this morning. She woke up in a great mood, ready to face a hungry day. I got a little apple juice into her before the cutoff time for liquids and we headed out. We had to be at Fletcher Allen by 10 so that they could run an IV with glucose for her to keep her blood sugar up while we waited for her actual appointment. By the time the IV was in, her glucose level was 64. Below 60 is considered low for her so we just made it. After an hour of so of the IV her glucose level was 109. We got the rest of her numbers back too, and a couple of them were interesting. For some reason that nobody explained and I didn't ask, her ANC today was only 980. I'm not sure how it could drop by almost half from what it was yesterday afternoon when all of her numbers were on an up-swing and she hadn't had any medications. Hopefully, there was an error counting or reporting her numbers at North Country yesterday and she didn't really drop. Her hemoglobin was down a little too, to a 9.4. However, those numbers were still good enough to allow her to go forward with her treatment schedule.

She hadn't had anything to eat since about 10pm the night before and we were scheduled for a 12pm lumbar puncture (LP), after which she could eat. Our appointment time got pushed back by delays beyond our control and she finally got the LP around 2pm. Needless to say, she was a very hungry little girl but she handled it well. Josh was with us today too, and Josh and I don't eat around Katie when she can't eat. He was more worried about his belly than she was about hers.

I got to bring home a new gadget today as well. We brought home a glucose meter (typically used by diabetics) with which we have to test Katie's blood sugar levels every morning before eating or drinking and every time she shows signs of having a low blood sugar. We are recording the data to try to get a better idea of how her body is handling sugar. This means we get to be the mean people and pick her finger every day for a while. No length of time was specified, but I was given a 50 day supply and a prescription for refills. I get the feeling that this is going to be with us for a while.

Well, she has had her bed time snack and is snuggled in for a well deserved rest right now. I think I'll follow her lead. Tomorrow will bring a new host of challenges.

We're Going In

We got the results of Katie's blood test back and her ANC is 1520. That means we're headed to Fletcher Allen first thing in the morning for a lumbar puncture and other forms of chemotherapy. Of course, the lumbar puncture means that Katie has to be asleep and that means it is a hungry day. Luckily, Katie is cooperating nicely with her new snack ritual tonight. She has to have just the right kind of snacks before bed to keep her blood sugar levels high enough to last through the night, and snacking is even more important on nights before she has to fast for 12 hours. She is eating a chicken burger, some crackers and cheese and drinking a glass of milk right now. That will easily hold her until morning, then we just need to get her to Fletcher Allen early enough that they can get an IV started to keep her blood sugar levels up while she is waiting for her lumbar puncture.

Therefore, I will not be posting anything to the blog in the morning since I will be on the road. But you can expect an update tomorrow evening after we get back home. Today went well. I expect tomorrow to go nearly as well considering what she will be doing.

On The Rise

Katie's ANC is on the rise still. It is now up to a whopping 280 and climbing. She is feeling good after a solid night of sleep and has been able to get out to spend a little time in the play room. Her temperature, blood pressure and heart rate are all stable. Hopefully, the doctors will take out her IV today so that she gets back into a normal eating habit again. That was the only cranky period this morning - breakfast. She woke up in a beautiful mood, but became belligerent and difficult to deal with when breakfast was put in front of her. She still has some concerns about her stomach even though there is nothing physically wrong with it. She has learned to resist food. After a bit of a battle that lasted long enough to have to reheat her breakfast, she did eat. So far this morning, we have only dealt with the nurses. The doctor should be in soon and we can ask him about the IV.

Loose Teeth

Today's post is primarily about Josh because he lost he first two teeth today. He managed to loosen his bottom two front teeth this morning at breakfast when he decided to help himself to a little extra syrup after I had told him that he had enough and left the room. He attempted to open the top of the syrup bottle with his teeth and was shocked and devastated to find that his teeth gave out before the bottle did. It was quite traumatic for him since he had only discovered that his teeth were starting to feel like they could wiggle just a couple of days ago. After his experience with the syrup bottle, he had two really loose teeth and a mouthful of blood. By the end of the day, his grandfather Kelley helped him to wiggle those teeth completely out of his mouth and he now has a classic jack-0-lantern smile. And now for Katie...

She is getting by fairly well, but it is definitely apparent that she has had a dose of chemotherapy that her body is not happy with. She is struggling with being hungry at the same time that she has an upset stomach - so not much food is going in, but she is sampling food constantly. Also, because she doesn't feel quite right, she doesn't want to do much. She wants to be cuddling with a parent or carried by a parent everywhere. She is a little cranky and a little less willing to cooperate than she has been during the last three to four weeks so it looks like our break is over. Its a good thing that we got some of big summer trips done early. We may not get another chance to take her on a big trip away from home again this summer.

It Begins

Today is the first day of the next round of chemotherapy that will last the rest of the summer. It is also a "hungry day" for Katie. I told her that last night and I didn't get much of a reaction out of her so I'm wondering what she will be like this morning when she wakes up and I tell her she can't eat. So far I'm feeling pretty lucky. The last few days she has been up before 7am, but it is currently almost 8am and she and her brother are both still sleeping. I will have to get her up soon though to give her a sugary drink of some kind before 8:30. That is the cut off time for any liquids and if she doesn't get something sugary into her before that time we are going to have low sugar problems again this morning.

We are at Art and Kathy's house this morning. We came down yesterday afternoon and spent the night here to make this morning's treatment a little bit easier. We also went to the movies last night to see the new Pixar film, Wall-e. It was great and the kids loved it. At the end, Katie was dancing in the aisle. We then came back to Art and Kathy's for dinner and a good night's sleep. It is nice to have family this close to the treatment center.

Today's treatments will include an echo cardiogram to get some data on how her heart is functioning in a healthy state before they begin giving her doses of doxorubicin (a cardio-toxin), a lumbar puncture for methotraxate (which includes sedation so she doesn't wiggle with a needle in her spine), and a drug coctail through her port after she recovers from the sedation which will include the vincristine, the doxorubicin, and our old friend dexamethazone (steroid). When all is said and done, she should be feeling fine at the end of the day, but her days are now numbered. I expect that she will have a few more days of feeling fine before she really starts feeling the effects of the drugs.

Fishing

I took Katie and Josh fishing this morning in my canoe. What a time we had! The fish were cooperative. The weather held out for a couple of hours and everybody caught fish. We actually walked to the lake with my canoe on a garden trailer behind us. It looked a little strange, but it worked fine and we didn't have to spend any money on gas to drive the car. I have a small electric trolling motor for my canoe and that can get us around pretty well so we walked to the nearest part of the river and loaded the boat in there. Then we traveled up river into the lake and sat at the outlet fishing for a while. The kids decided to keep the fish that we caught today and cook them for lunch so that is exactly what we did. We came home with six yellow perch and one small-mouth bass. We also caught a bunch of rock bass but we let those go and we let a couple of perch go that were too small to keep. After fishing for a couple of hours, we motored back down the river to where we had left the cart. We loaded the canoe back on and headed back home.

I did skin the fish and cook them up for the kids for lunch. They loved them. All seven fish were gone in under five minutes. There may be more of those trips in our future.

On The Mend Again

This morning, I have good news to report. Katie is feeling much better today. Her nausea seems to have passed and she is keeping food down. Keeping food down means that her blood sugar levels were okay this morning when tested at North Country Hospital. We still have to push food, but so far, we aren't pushing for every single morsel that enters her mouth. We are now pushing for whole servings of food. She has lost weight and we would like to see her put some of that weight back on. Her pediatrician suggested that Katie's very low body weight is contributing to her low blood sugar problems because if she gets sick and skips a meal, her body doesn't have any fat left to convert to sugar and work with. Fattening her up should improve her ability to handle bouts of nausea in the future.

I never thought I would say this, but I think we could really use the steroids again. I know that they created a ravenous, cranky eating machine the first time around, but she also put on weight while on the steroids. I could happily skip the cranky aspect of the drugs, but I'm looking forward to the fattening up.

For those of you who have children. Do you remember when the doctor would weigh your kid and say that he/she was in a certain percentile. Well, Josh was always in the 90th percentile for his height and weight. Katie has always been small and has historically been in the 10th percentile for height and weight. With her current fat reserves issue, she no longer even registers on the chart for weight, but she is growing a little taller and has now reached the 20th percentile for her height.

Haunted by Low Blood Sugar

Ok, Katie is home and many of our questions were unanswered. Nobody knows the reason for the development of the sores, but the sores are not all the same. The openings in the skin in her diaper area seem to be splits in the skin with an unknown cause, but they should be treated carefully because of the constant contamination of the area whenever Katie has a bowel movement. The sore on her hand seems to be the site of a reaction to an infection, but the source of the infection is unknown and Katie's ANC is still high enough to fight off infections so the doctors aren't worried about that at the moment. The source of the nausea is also unknown. She may be reacting to her medications or she may have picked up a stomach bug or the Flu.

One thing is for sure, all the vomiting has caused a pretty severe drop in her blood sugar levels and that has the doctors worried and has left Katie feeling pretty bad. We were told to push food at every opportunity whether she is vomiting it back up or not. Her body will absorb something even if it is just a little something. Katie does not want to cooperate with that plan of action and would rather skip food altogether than eat and get sick. We have made it clear to her, as it was made to us, that if she didn't eat, she would end up back in the hospital with the IV tube connected again.

Katie has to go back to the hospital tomorrow morning for a follow up blood test to make sure that her sugar levels are coming back to normal, and if they are not, she will be staying there.

That's all for now. Maybe I'll post one more time before bed if anything changes, but I likely won't post again until tomorrow morning after her blood test.

Fiddleheads

So it's a strange title for an entry in a blog chronicling the life of a child with Leukemia, but it makes sense because I am eating fiddleheads as I write this entry. At least I think I'm eating fiddleheads. I have never eaten fiddleheads or watched anyone pick, prepare or eat them. But after a little research on the internet, I am fairly confident that I can accurately identify fiddleheads growing in the wild, and tonight I stumbled across some beside the river where we had our dinner. So, Josh and I picked a couple of dozen and brought them home. I just cooked them up and ate about half of them while thinking about what to put in the blog for today. They weren't bad. They were nice and tender like a soft green been but they didn't have the asparagus/mushroom like taste that I had been lead to expect. Maybe I over cooked them. My main concern now is will I still feel good a few hours from now or have I just eaten something I probably shouldn't have. I guess I'll find out.

To tie this back to Katie, it is safe to say that I didn't feed her any of the fiddleheads. I am the only person taking part in that experiment. She is happily eating other, better known food tonight. She nibbled some popcorn chicken earlier along with a little of my chicken sandwich and her mother's fish sandwich. It was a fitting end to what has been an overall pretty good day.

She got outside this morning to watch her brother play t-ball. She spent some time with Josh and I at the barn, shampooing the horses and going for a walk in the woods to try and find a turkey that we could hear calling. She got to take a nice little nap this afternoon while snuggled up next to her dear ole dad and her brother. And finally she got to go out to dinner at the B&W Snack Bar. That is where the popcorn chicken, the chicken sandwich, the fish sandwich and the fiddleheads came from. We had to order and pay for the normal, every day food; but I spied the fiddleheads from my vantage point at the picnic table and we were able to bring home that little experiment free of charge. Katie is now sound asleep and I will let you know how I'm feeling tomorrow. Happy mother's day to all the mothers who read this post Sunday. I wonder if my mom would like me to pick her some fiddleheads tomorrow...

Day 2 - Very Nice

Katie's appointment today was at 8:30am and it was over by 10. We didn't waste any time getting out of the hospital and into a toy store. We were shopping for a new tricycle for Katie so that she could have another opportunity to exercise her legs. Josh's old tricycle is still too big for her - she can't reach the pedals. We tried out every tricycle at Toys-R-Us until we were sure that we had the one that fit her the best. Then we road around the store shopping for a gift to bring home to Josh. We settled on a Transformer that he has been begging for for weeks.

We left the store with our new toys and headed out to lunch even though it was only twenty minutes after eleven. Katie claimed that she was hungry and I don't argue with her when she says she is hungry. We decided to try out the 99 restaurant because neither of us had eaten there before and we were not disappointed. We both ordered a baked scrod with the perfunctory potato and vegetable. Lunch was great and Katie ate very well.

After lunch, we finally hit the road for home and Katie fell asleep before we were even out of Essex. She slept all the way home and woke up just as we entered Barton. We were home in time to surprise Josh at school and pick him up instead of letting him ride the bus. He was ecstatic and couldn't resist showing off his sister to every kid in the kindergarten and any teacher passing by. We spent the rest of the afternoon caring for the horses and playing around in the backyard. Now we are off to bed because tomorrow morning starts early and it is full of activities. Josh has T-ball at 9 and the farrier is scheduled to show up at the barn at 10. I'll have to get to the barn early because I want to brush out and possibly shampoo the horses before the farrier gets there. They have been enjoying the warm weather and rolling around in the dirt, mud and loose hay.

Good night everyone. Oh, and Katie just told me she's hungry...

Quiet, Lazy Weekend of Fun

As it turns out, we never made it to the hardware store, but we did get to the LIBRARY--a favorite Kelley family destination. Katie was very happy to be out and about. She walked about the library on her tiptoes, sneaking up on Rick and on Susan Guilmette, who forgave Katie all her wiggles. We had to cut our visit to the library short, I'm sorry to say, because Katie was hungry. She has been eating like a pig, so we took her out to lunch at the Parsons Corner, where she ate and ate and ate. (She has an interesting relationship to potatoes. When Laurie asked her what she wanted, she ordered mashed potatoes and home fries. We had to lobby for some scrambled eggs and some ham, all of which she ate.) She woke up hungry after a long nap, during which I spread mulch, and she requested dinner. She is especially partial to Sara McKenny's noodles, and she ate more than I did. She is clearly making up for lost time.

We were very happy to see Joshua this morning. The Kings called about a play date, and off we went. Joshua was happy to share his play date with Katie--he is such a good kid--and Katie was so happy to see other kids. She watched for a while before she was ready to play herself, but she warmed up to the idea during a game of hide and seek during which she got to her feet and tottered about the Kings' house. She snacked her way through their house while Joshua played with Legos. She played happily with Sam and Olivia. She gave Jack a big kiss. it was so exciting, and so comforting, to hear her chirping away cheerfully with people she likes and sees so rarely. Katie's approach to the world has changed considerably. She pauses before leaping in. She is relearning how to make friends, though, and she is remembering how to play.

Suffice it to say, she was asleep five minutes later, and she continues to rest peacefully in a nest Rick built for her in the living room. Joshua is watching a movie in our room. Rick is grading student work. I did get to the blood drive in Glover, but that is the sum total of my productivity today. The house is quiet. We are all quiet. It is so very nice to have a quiet, lazy Sunday. I have missed these cozy days.

I hope that you have all had a quiet, peaceful day, too.

Home Improvement

Boy am I glad that this little girl is out of the hospital. She is so much more alive when she is home. Katie is animated, motivated and hungry. She spent the day yesterday, smiling, laughing, playing and loving everyone around her. She also spent a good portion of the day eating. She ate everything in site - never much of any one thing, but no food was safe within her sight. This morning has started out much the same. She asked for cereal for breakfast, but in the picture included with this post, she is eating my English muffin and turkey sandwich. She slept through the night peacefully in her own bed and didn't wake up this morning until after her mother and brother had already left for school.

Being home for her is the magic medication that is doing more to improve her mental and physical health than any of the drugs at the hospital. She is more active, more satisfied, and more willing to do the things she needs to do to regain some of the physical capabilities that she lost during her latest round of illness.

We will be going to North Country Hospital this morning to get the blood drawn for her first cell counts since leaving the hospital so that we can hopefully have counts back before the end of the day. Otherwise, if we wait till this afternoon for counts, we won't get the results back until Monday.

Her physical therapist will meet us at home this afternoon and we can begin to work on getting her to walk confidently again. Her muscle control is very shaky right now, and while holding a cup or some food, her arms shake uncontrollably and make it difficult for her to feed herself. Her legs are just as unreliable, but cause more problems for her when they fail. She is afraid of falling down, so she tries not to walk much at all and if she has to walk, she walks the shortest distance possible. The only way to describe her walk is to compare it to a the gait of a person with mild cerebral palsy. This new inability to walk is a direct result of her chemotherapy. The Vincristine that she gets generally causes this side-effect after a while and we have been told that Katie resisted the side-effect for a longer time than normally expected. With Therapy and time, this side-effect will eventually reverse itself, but for now we have to deal with it.

Amy has her own opinions about how beneficial it is for Katie to be home and I am encouraging her to add those at some point today. But just to give you a heads up, Josh said last night that he has caught her crying happy tears several times already while watching Katie interact with Josh and I.