A Short Update

Katie's treatments went fine yesterday and her blood tests showed numbers that were very positive. Her ANC is over 900 at this point and her health has improved to such a degree that she has been given the OK to go back to day care. Katie and I visited daycare today to get a feel for it and she didn't want to leave after just a half hour. She wants to go back Monday so I told her we would try a half day Monday.

Amy had a lot to say yesterday about Katie and her positive prognosis - so much so that I told her she should write the blog entry. However, she fell asleep before doing it so I thought I should at least put in a little filler to forestall questions and let people know that there was nothing to worry about. Hopefully, Amy will have a chance to update the blog with her thoughts from yesterday later this evening.

She Has Croup

Well, it is now believed that Katie has croup. Croup is generally caused by a virus with a gestation period of 5 to 7 days. Therefore, it isn't likely that she picked it up while in Boston or on her short trip out to her grandparent's house. It is something she developed while staying at Fletcher Allen. As her body tries to fight it off, some negative consequences are beginning to be observed. Her hemoglobin count has dropped down to just 7.5. Her platelets have dropped down into the 50's, and her white blood cell count has also dropped. Oddly enough, her ANC appears to be rising slightly despite the dropping white blood count. Her ANC is currently 70. Apparently it is normal for some cell counts to drop as the body attempts to fight off a virus. Croup is also capable of causing fevers and other complications which could keep Katie in the hospital until this has sorted itself out. Amy and I are starting to talk about and plan for which one of us is going to miss the first couple of days of school with the students.

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.

3:30 AM At Fletcher Allen

Although the night started out at North Country Hospital, that is not where we stayed. The doctors at Fletcher Allen were not thrilled to hear Katie's vital signs and symptoms so they wanted us brought to them ASAP. Really, we probably just should have driven to Fletcher Allen straight away. Things didn't go as well as they should have at North Country. We left home at 9:30 and Katie hadn't had an IV put in or any blood tested or any medications given until after 11:30. In addition, it was the first time that someone had been on duty who knew how to access Katie's port during one of our emergency visits since this whole process started and that person was unable to properly access her port after a couple of tries. Port access is usually a quick ten seconds and its over with. Last night, each attempt was drawn out to thirty seconds or more with Katie in pain and afraid the whole time. When that failed, an IV was attempted in her arm with the same results. The nurse couldn't get a vein. Finally the actual doctor was brought in and an IV was put in quickly and easily. It was very traumatic for poor Katie and I wish it hadn't happened that way. We have never had a less than excellent experience at North Country before, so I'm sure this was a fluke but is was very disappointing. The IV had only been in for ten minutes when Fletcher Allen made the call to transfer her, then we had to wait for the ambulance to transfer her from North Country to Fletch Allen. By the time Katie arrived at Fletcher Allen it was 3:30 in the morning and that's when treatment finally started.

The nurses here accessed her port in record time, had her on IV antibiotics and a rehydrating solution right away and called in a portable x-ray machine to examine her internal organs since Katie was complaining of stomach and back pain. By 4:30, all tests had been run, all drugs administered, all pictures had been taken and Katie was allowed to go to sleep. She was exhausted.

This morning, we started to get some of the results of those tests back. The fever that she had when she arrived could have been caused by bacteria since her ANC is so low, but the blood cultures haven't grown anything yet which is a good sign. She has developed a loose sounding cough that merits a closer look to make sure there is nothing in her lungs. Pneumonia is a concern with such a low ANC. The x-rays didn't show any problems on initial inspection, but her bowels are full and she is pretty badly constipated. After being sick since Saturday, she is also pretty badly dehydrated and they are hoping that the dehydration is causing one of her other more serious problems right now. Her heart rate is racing and her blood pressure is extremely low. At last check, her heart rate was 207 beats per minute while sleeping and her blood pressure was 79 over 34. Those kinds of readings have everybody a little worried and the pediatric intensive care unit is being called in to have a look at her to see what can be done about the blood pressure and heart rate.

At this point, it doesn't look like we will be going home any time soon. The antibiotic regimen and the treatment schedule that she is on is already looking reminiscent of the last time we were here and ended up staying for more than twelve days. I'll update the blog again when we know more information. For now we are all just recovering from last night and waiting.

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.

Changing of The Guard

I'm back online and Amy has relieved me at the hospital. Interestingly enough, I am not online in a traditional setting but from my laptop while sitting in front of a campfire beside a tent in my brother's back yard with my brother Ryan, my son Josh, and his cousins, Kyler and Eric. I was not prepared for this makeshift camping trip, but Josh has a bit of a cold so Amy dropped him off at my brother's house before coming to the hospital. By the time I got there, they had already cooked up this little plan and were busy moving sleeping bags into the tent. So I just traded the hospital bed for the hard ground. Somehow, I don't feel like I'm getting the better end of this deal. I'm going to miss my Thermarest, my sleeping bag, my warm clothes and every other camping item that I would have brought had I been forewarned.

But enough about me - back to Katie. When I left the hospital this evening, Katie had a temperature of 38.4 Celsius. She was in good spirits and has been in good spirits ever since she vomited this afternoon. I'm not sure how much Amy has passed along in my absence (I didn't read the earlier blog postings before starting this one) so I will give a brief synopsis. She has had a fever, off and on, for the past couple of days and has stopped eating anything meaningful. To handle the eating problem, A new IV has been ordered called a TPN which should provide all of the nutrition she needs even if she doesn't eat. The fevers are a bigger problem. The doctors are not fond of this newest rash of fevers so that are starting Katie on a new round of antibiotics, afraid that they may be missing something in the cultures. In addition, Katie developed a small cough today which is really the first localized symptom that we have seen in days. Given the cough, no one wanted to take a chance that something might be wrong with her lungs, so a CT scan was ordered and Katie underwent her first CT scan with flying colors. We had a couple of hours to prepare for the scan so I spent some time telling her what to expect and explaining how the process would work. I even used a small toy dog and some parts from the hospital bed to simulate someone sliding into a CT scanner. Katie admitted that she was scared, and her eyes were as big as saucers going in, but she held still and the technicians were able to get a good picture of her lungs very quickly. It helped the the Child Life people hooked us up with a portable DVD player and a Dora video for Katie to watch while she was getting scanned. I was able to don a lead shielded apron and stand next to Katie, holding the DVD player so that she could look at the screen and watch the video upside down while being scanned.

After the CTscan, Katie happily went back to her room and took a desperately needed nap. Unfortunately, she vomited about 10 minutes into her nap and had to start all over. After I got her all cleaned up, she slept peacefully for the rest of the afternoon. She even got some of her appetite back and ate a little tortellini for dinner. She was very happy to see her mother, and spent lots of time giving her hugs and kisses and telling her she loved her. Josh was just as happy to see me, but Josh, I am unhappy to report, has a cold. He won't be allowed near his sister until his cold clears up, so they won't see each other at all this weekend. Katie asked for Josh too, but she accepted it well when we told her why he wouldn't be allowed to visit.

At this point, we are going to wait and see how Katie handles the new anti-biotic and anti-fungal medications. If things are pretty much the same next week, she will probably have her bone marrow pulled and tested on Wednesday. The bone marrow test will let the doctors know whether her marrow is producing healthy cells like it should be or whether it is producing leukemia cells again which might explain why her cell counts are not coming back up like they are supposed to. Hopefully, she recovers before that time and the tests only show healthy, productive cells that were just repressed for a while by a combination of chemotherapy and a viral infection.

With these happy thoughts in mind, I will now curl up next to my son and go to sleep in this tent with the smell of camp fire smoke in the air. This is our first camping trip of the year, even if it is in the back yard, and I will make the best of it.

A Little New Information

Katie's day has improved a bit since this morning, but not a great deal. She doesn't seem to be in as much pain and she is willing to eat. The good news is that her ANC might be starting to climb again. It is her ANC that lets us know how her immune system is doing - the higher the better to a point. Her ANC has been zero for a couple of days now and 500 is usually considered the cutoff point for an effective immune system. Well, as of this afternoon, it is up 4%. I asked what 4% translates into but I haven't gotten an answer yet. I'm going to assume that 4% does not mean 4, but that her ANC is probably a little higher - like maybe 25. Either way, it is good sign. Another good sign is that her intestinal bacteria test showed that Katie still has the necessary bacteria in her system to digest food properly, and they are not accompanied by any bacteria that would make her sick. Conversely, the good signs are accompanied by another bad sign. Her platelets are dropping again for no known reason when they should be recovering.

Earlier, I noted that Amy was pretty frazzled... The hospital staff noticed too. Keeping the parents mentally and emotionally healthy is an essential part of making the patient healthy again, so the hospital is taking steps to help Amy relax a bit. They have arranged for Amy to receive a massage. She LOVES massages. With that kind of treatment, she may not want to come home Tuesday night when I go there to relieve her.

Still No Change

Katie spent the entire day in bed, suffering from a low grade fever. I know that I wrote that her fever had broke last night, but it came back by 10am and stuck with her for the rest of the day. It left her feeling generally low on energy and unwilling to move, be moved or be touched. However, she did at least have enough energy to interact with people today and was generally in a good mood as long as the person she was interacting with was not trying to take her temperature, take her blood pressure, give her medicine or change her diaper.

Because of the sustained fever, the doctors have added another antibiotic to the stream of drugs flowing through her IV. The cultures so far have tested negative for all of the nasty bacterial infections so far, so the doctors are thinking the cause of Katie's symptoms is some kind of viral infection that her body will have to fight off on its own.

Given that possibility, it now looks like Katie will stay in the hospital until Wednesday or Thursday of this week. Katie hasn't complained yet, but this stay at the hospital has to feel really long. The first time we were admitted, back in January, she was allowed to wander the halls at will, ride bikes, visit the play room, etc... This time, she has been and will be spending all of her time in her little isolated hospital room.


Josh and I will be headed home Sunday while Amy and Katie stay at Fletcher Allen. School starts up again Monday and Josh and I will be back in school and on our regular schedules again for a couple of days at least. Beyond that, Amy is definitely going to need a break and she will be wanting some time back at school herself, so I will probably finish out the week back at Fletcher Allen. I'm not looking forward to spending even a couple of days in Katie's little hospital room. I don't know how Amy has already spend three days in there and is looking forward to another two or three. I want to thank Ryan and Heather for letting Josh and I stay with them this week while Katie has been in the hospital. Josh and Kyler have had a great time playing together.

A Timely Transfusion

Katie is at Fletcher Allen right now getting her fourth transfusion and she really needed it again. Her hemoglobin numbers have been dropping steadily since starting this latest round of chemotherapy and it finally caught up with her. She was tired this morning--very tired, and she was complaining about a headache yesterday afternoon. She hadn't gotten out of bed by the time I left for school, and when I talked to Amy two hours later she was sleeping in the car. We are also wondering if she may be coming down with something or if she is feeling nauseous due to her chemotherapy despite her anti-nausea medicine. She vomited in the car this morning, and she hasn't had vomiting issues before.

This just in. Amy called while I was writing this post, so I can add some additional information.

Katie is most of the way through her transfusion at this point and is feeling great. She has a nice pink color to her skin, she is warm and she is wiggly. Her headache is gone, and even her stomach feels fine.

I also just learned that a researcher at the John Hopkins Hospital has confirmed that the original blood samples did contain small numbers of monoblasts, the indicators of AMoL. Therefor, Katie is no longer considered to have just ALL, she officially has a mixed lineage form of leukemia. The MRD results have also been confirmed, and the monoblasts do appear to be gone at this point.

The doctors have told Amy that these results don't change her prognosis at all because of her previous successes so far. She is still an early responder, and she is still accepting her chemotherapy very well. She is uncommon. She is special. She is Katie, and she is working hard to beat this.

More from Monday

We are home and the kids are in bed. We got home just shy of 14 hours after we left for the day and the kids are tired. For that matter, so are the parents. Josh went with us today for the first time since coming to visit us in the hospital during our first stay. He got to watch as his sister had her port cleaned and accessed, as she was actually given anesthesia and put to sleep, and as she received her various chemotherapy infusions. He also got to while away the hours with us, just hanging out in the hospital room and the infusion bay. When we asked what his thoughts of the day were, he summed it up with one word - boring. He was sorry that his sister had to go through that, he definatley didn't want to have to go through that, but he also didn't want to have to stick around and wait for it all to happen either. I think he has a new appreciation for why we keep sending him to school even when we have to turn around and head to Burlington after dropping him off.

In addition to the discovery of AMol indicators that I mentioned in the earlier post, we also learned the results of Katie's MRD test. The test indicated that she has as many or fewer blasts left in her body as a perfectly healthy person without leukemia. That is very good news. Now we just have to work to keep those numbers from every coming back up. The finding of possible AMol (Acute myeloblastic leukemia type 5) is frankly terrifying, but the MRD results are very encouraging. If AMol was present in her body when this all started, it seems to be gone now. Success rates for AMol are just a lot lower than I would like them to be and the disease is considered rare instead of common like ALL.

As part of our new round of chemotherapy, we will be traveling to Newport Pediatrics 3 days per week to receive some of the chemo drugs subcutaneously. We will also be giving oral chemotherapy drugs at home in doses that vary by the day on a schedule that has me slightly confused. Luckily, our doctor really likes calendars and thinks everyone should use them. She made us a calendar of what to give, how much and when.

Because of the new round of chemo, we can expect Katie's blood counts to start dropping again and she will lose the energy that she has been enjoying so much over the last week and she will likely become neutropenic again which make her nauseous. Wish us luck.

Signs of an Early Responder

I just got off the phone with the doctor and she had good news. The bone marrow results are in and Katie has fewer than 3% blasts left in her bone marrow! The first mark of a fast early responder is to have less than 5% at this point. If you recall her stats when she was first admitted to the hospital, her blast percentage at that point was estimated at greater than 65%. I am very happy.

The next indicator comes at the end of the month with further testing, but if she is under 5% now, she is likely to still fall into the fast early responder category at the end of the month as well.

In the mean time, the picture on the right shows where she chose to take her nap this afternoon. Lying in the sun, snoozing away seems like a good way to spend a cool winter day. I might have to join her. :)

News from Today's Trip

It is 3:15pm and Amy and Katie are still in Burlington waiting for blood test results to come back. They think that Katie is going to get an unexpected transfusion this afternoon. The last transfusion that she got took 3 hours. If this one takes as long that will leave Amy and Katie in Burlington with freezing rain and terrible road conditions on the way. If that is the case, I will try to talk Amy into just spending the night at her parents house in South Burlington and coming home tomorrow.

As for Katie's medical update, her early cytogenetic tests are back and we were told that she doesn't fit into any of the 5, poor prognosis categories, but that she doesn't quite fit into the 2, good prognosis categories either. Once again, she is going to do things her way. The doctors said that most kids are not so easily categorized this early on, and that this news is not bad news. Just the opposite, they were pleased that they could rule out the worst possible prognosis.

That's all the information that I have for now. I will post an update again later when I have more information.