Chemo and Ear Infections

Overall, things are still going smoothly for Katie. She has only had to contend with minor incidents in the last few weeks. She had another ear infection a couple of weeks back that gave her enough of a fever to put in the emergency room at North Country Hospital for an afternoon. Her port access went smoothly and she was in at 1pm and out by 5pm. That's the kind of quick trip to the ER and back that we like.

This past Friday, she traveled to Fletcher Allen again for another round of chemotherapy. The last few monthly doses haven't had much of an effect on her other than to make her tired and a little ill - nothing that disrupted her activities. This dose of chemo had a more apparent effect. The Vincristine made her feel nauseous for the first time in a long time and she made several trips from her bed to the bathroom last night to get sick. I figured that she would be too tired to go to school today, but she woke up bright and early, ready for another day. She was more ready than Amy and I.

This past Saturday, we bought her her first pair of downhill skis, boots, and bindings. Now that there is snow on the ground she is eager to try them out. If the promised nor'easter hits tonight and we get a snow day tomorrow, we'll have to let her break her skis in in the back yard. Maybe she'll even let her parents sleep in late...

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.

The Common Cold

Things have been going reasonably well for Katie lately. She has been going about her normal routine of playing with her friends at daycare all day and zooming around the house playing at home each night. Markers and paint are her creative release of choice lately. Unfortunately, her body and her books have become her favorite canvas. She has colored or painted on herself and her books no less than eight times in the last ten days. I'll post some pictures the next time she gets creative.

In the last couple of days she has taken a turn for the worst. She developed a nasty cold over the weekend. It is restricting her airway again and making it hard for her to sleep at night. We can easily identify the source of this cold... Every kid in her day care suddenly got sick over the weekend. Unfortunately for Katie, while her body is busy fighting off this cold bug, we are going to give it more things to have to deal with. She has an appointment for another dose of Vincristine and Pentamadine this Thursday at Fletcher Allen. So, by the time she should be recovered from her cold, the Vincristine will be making her nauseous. Her doctors asked us to get a blood test done last night to ensure that her body had the resources to fight back, and it does. Her numbers look really good and all of the right numbers are elevated, indicating that she is fighting the cold. The next 10 to 14 days are just going to be a little extra rough.

Another Monthly Visit Come and Gone

Katie had to go back to Fletcher Allen for her monthly checkup and dose of Vincristine Thursday. Things went pretty well. Her appointment wasn't until noon, so we had plenty of time to get there and no reason to rush. It wasn't a hungry day for her so we could stop and get some snacks on the way into Burlington which always makes her happy. She stayed happy even as we walked into the clinic. She even lead the way to the infusion bay, running in front of me, laughing and squealing, telling everyone who would listen that I was chasing her with the stroller. She ran right into the infusion bay and that's when her enthusiasm ran out. She suddenly didn't want to be there and didn't want anyone accessing her port. But everything went so smoothly that she was still complaining about not wanting anyone to touch her port when the medication was already in and her port was already deaccessed.  It was a nice, quick treatment. After that, we picked up Grandma Kathy and headed over to the Olive Garden for lunch. Trips that go as smoothly as this one just did go a long way toward making the next trip seem not quite so bad. Granted, the Vincristine did end up making her vomit later that night, but that was to be expected. She had a pretty decent day today and is sleeping peacefully right now.

A Hum Drum Day

Katie didn't do much today. I don't know exactly if she wasn't feeling or if she was just upset about being left at home with Grandma while the rest of us went off to school, but she spent all of her day on the couch not wanting to do anything but watch Dora. There was evidence that she just didn't feel well. This morning as we were getting ready for work she was complaining of feeling bad and she was displaying signs of a possible low blood sugar. Nothing really low, but maybe just low enough to feel crummy. So I started her off with some orange juice. It didn't help. By the time we were ready to go, Amy gave her a dose of Ranitidine and Zofran to combat other potential causes of her crummy feeling. That didn't work either. The Ranitidine tastes bad and Katie gagged on it. Then she vomited all over herself, the couch, and her blankie. But immediately after, she said that she felt better and she seemed to truly be feeling better as we headed out the door.
But then she had her blah day and it was easy to believe that she wasn't feeling better after all. That is, until Amy and I returned from work. She got off the couch for the first time to greet us with very enthusiastic hugs and she has been playing well ever since. So who knows what inspired her day.
Right now, she is getting tired and cranky. It is almost time for bed.

We're Settling In

OK, we have some more information. Pneumonia has been ruled out. Katie's lungs are just fine. Her bowels are moving - albeit slowly. Her blood pressure is rising. Her heart rate is slowing. Her fevers keep coming and going still, but none have been very high. She is pretty well stabilized at this point.

One theory that the doctors currently have is that Katie really did have a bacterial infection of some kind and that the antibiotics killed off the bacteria fast enough that the sudden lack of bacteria in her blood stream caused the drop in blood pressure. Nobody knows for sure because the cultures still have not grown any bacteria.

Katie has stopped complaining about aches and pains everywhere except in her belly. I'm not sure why all the other aches and pains have gone away. She is not on any stronger pain killer than Tylenol and she was on that at home and it wasn't working any more. As for her belly pain, the doctors are narrowing the causes down. They have tried anti-nausea medicine and Katie has had a bowel movement with no change in the amount of perceived pain. The next theory to be tested in that she may be experiencing heart burn so they are going to give her an antacid. This is a good thing for two reasons. First, it might help alleviate the pain. Second, the last time we had an extended stay here and remained on antibiotics the entire time, Katie began to vomit blood because the antibiotics messed up her stomach so badly. The antacid should help to line the stomach and prevent that from happening again.

Also, just like the last time, we are here until two things happen. Katie has to be fever free for 48 hours and her ANC has to start climbing again. Until that happens, we are residents of Baird 5. So if things go smoothly from this point on and she has no more fevers and her ANC starts climbing, we could be home as soon as Monday or Tuesday. However, every fever that she gets, will push that date back further and further. Plus, we don't know if her ANC has stopped dropping yet, or if it has further to drop still. Time will tell.

By the way, I haven't mentioned something very important yet. Today is mine and Amy's fourth wedding anniversary. We didn't plan on spending it in the hospital, but at least we get to spend it together. I snuck out first thing this morning and bought her a card in the gift shop. Flowers were out of the question. They aren't allowed in the isolation units that Katie is currently staying in. Amy has promised to give me a present gift on our anniversary as well. She said that I could shared the hospital bed with Katie tonight, and she would take the chair. Now that's love.

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.

Late Night Post

So it's 1AM and it might be a little late to post to the blog, but I thought I should leave a quick message. Katie is sick. She has been vomiting since about 9:30 tonight. Unfortunately, she even vomited shortly after taking her anti-nausea medication and we don't know how much her body may have absorbed so we can't give her any more until morning. This is not incredibly new. She has had nausea and vomiting trouble for a few days now, but nothing like tonight. For the past couple of days, after she vomited once, she would be fine for the rest of the night. Not tonight. Right now, Katie and Amy are snuggled up in my bed since Katie's bed was the unfortunate site of the first vomiting incident. I think I'll take the futon for the next few hours and leave them to stretch out and get what sleep they still can. If Katie still feels this sick in the morning, one of us will stay home with her.