Update

Katie's fever dropped a little lower over night, to hover around 101. In the morning I spoke with her doctors and arranged for a follow-up. At her follow-up The doctor and I spoke about Katie's recurrent ear infections and decided to try Augmentin, and augmented dose of amoxicillin designed to stay in her system longer to kill off more bacteria.

From the doctor's office, we were transfered to the hospital for another blood count, blood culture, and another dose of Ceftriaxone. At the hospital we were told that the previous night's x-rays had just been read and that the doctor thought he saw a shadow of pneumonia. New x-rays were taken, and it was confirmed that there indeed was some pneumonia in her lungs. However, the Augmentin and the Ceftriaxone both fight pneumonia as well as ear infections so no change in her medications are necessary.

Port access was a breeze again, and Katie's blood counts were the pleasant surprise of the day. Her white blood cells climbed back up to 2.6 and her ANC climbed up over 1200. Her hemoglobin was still low (I don't have the number handy) and that concerns us since fever tends to kill off extra hemoglobin.

During our stay at the hospital, Katie's temperature began to rise again. She was given some Tylenol to help keep her comfortable and although she felt better, it certainly didn't keep her fever down. Katie was discharged with a fever of 103.7 and we headed home. By 9pm, her fever had risen to 104.9. Happily, that was its highest point. Her fever slowly dropped over night until it was once again hovering around 100 this morning.

She has spent most of today flopping back and forth between feeling sick and vomiting, and then feeling great and chattering and playing as if nothing were wrong. As I right this now, her temperature has started to climb a little, and she is ready for bed. I hope she gets a good night's sleep tonight so that her body can begin to recover from this round of illness.

All Tests Are In

Since I express some feelings in this blog post, I wish to point out first that I, Rick Kelley, Katie's dad, am the one writing this entry and not Amy, her mom.

The remaining test results from Katie's bone marrow are in. There is still no sign of cancer and the tests revealed that her cells are maturing as they should be. To say that information was a relief is an understatement. Further blood tests also indicated that Katie's antibody count was low. Her count was 420 but I foolishly didn't ask what normal counts should be. Her ANC dropped again too. She was just over 500 Monday, but by Thursday she was back down to 220. However, in an effort to boost her immune system and fight off her cold and her virus, she received her first IVIG (Intravenous immunoglobulin) Thursday. We have been asking for Neupogen for some time to help boost Katie's immune system, but we didn't even know another option was available in the form of the IVIG until two days before Katie received it. I can't tell you exactly why one option was chosen over the other option, but I can tell you that I am glad that something was done.

Today, several days after the IVIG, Katie is feeling better. She is currently suffering from Laryngitis, and her swollen voice box is making it difficult to breathe, but she had that problem before we went to Fletcher Allen on Thursday. The doctors checked her over and told me to call if it got worse. It was bad Thursday night and Friday night. I was up a lot those two nights, checking on her to make sure that she was still breathing okay. Luckily, it never quite became bad enough to take her back to the hospital. Last night, she slept better and breathed easier and today it is a little better than that.

We are still fighting the battle to heal her lips but we are winning. I don't know if the IVIG is helping at this point or if the continued heavy use of the Medicated Blistex is working wonders all by itself. Her lips look normal at this point, but if she lets us look under her top lip, a sore is still hiding there. However, this last remaining sore doesn't seem to be causing her any pain and she will let us lift her lip up to apply the Blistex directly to the sore. The remaining sore is not a nasty, white hole surrounded by angry, red flesh any more. It is only slightly off-color and there is no redness surrounding it at all. She even brushed her teeth all by herself tonight before bed, which is quite an accomplishment since teeth brushing has been a real battle these last couple of weeks because of the sores on her lips.

Her spirits have been good and her energy has been great. She played around the house all weekend with her brother - running laps from room to room and climbing stairs and sword fighting in between coloring, painting, and just being a kid. It would have been nice to spend more time with her while she was feeling good this weekend, but I had a lot of work waiting for me and it kept me busy all weekend. She played around me as I sat at my computer for hours on end. Since Friday after work, I created and published a new website for a company that I work for our of St. Johnsbury, and I wrote two college papers for a course that I'm taking as part of my Master's program. I am very pleased with myself for getting that done, but I am sorry that I missed another opportunity to play with my children. Unfortunately, weekends spent working are pretty common place for me when my college is in session. There isn't time to do the work any other time.

Some Preliminary Good News

As you may know, Katie had some bone marrow samples taken again this last Monday. Normally a bone marrow sampling for Katie consists of a single bone marrow aspirate from one hip. However, Monday, the doctors took bone marrow aspirate from both hips and they also did a bone marrow biopsy. Due to the extra medical attention she received Katie was a little more sore coming out of this procedure than she historically has been.

The bone marrow was extracted at around noon on Monday, and at 2:30 on Tuesday the doctor called me at work with the preliminary results. I am happy to report that when Katie's bone marrow samples from Monday were compared to those just a couple of weeks ago, the doctors were able to observe her cells maturing normally just like they are supposed to. In addition, they did not see any signs of leukemia cells in the sample. I am happy at the news, but I am also trying not to be too excited about it. The bone marrow samples will still undergo sever more tests and be looked at by many more people, and any one of them may report something that I don't want to hear, but for now things look good.

On another positive note, Katie's ANC on Monday had climbed substantially and was at 520. If that number is a sign that she is recovering and not just an abnormally high spike, we will soon be back to something closer to normal.

Tomorrow, Thursday, Katie has to return to Fletcher Allen for a follow-up appointment. We are hoping that more news has come back from the bone marrow and we are hoping that her ANC has climbed even higher. Her infection seems to be almost over, but her lips still look pretty bad. The sores left a lot of damaged tissue and her lips are cracking as they heal - leaving her with blood stained teeth several times each day. Her lips are still sore to the touch and putting any kind of lip balm on them is still a challenge unless she is sleeping. She also has a nasty sounding cough that she managed to pick up from her brother and it wakes her up at night. I think her throat hurts from coughing but it is hard to tell. For now she is sleeping soundly, and when she wakes up in the morning we will be headed back to Burlington.

Good News/Bad News/Good Again

What a day of ups and downs today has been. The morning started off well enough. Josh and I slept late and started our day slowly. By 10 am I had my first update from Amy. Katie had slept fitfully last night, not yet used to the nurses coming in to take vital signs every couple of hours. She was feeling pretty good, but was still not happy to be at the hospital. To make matters worse for her, but not us, the doctors were able to move up Katie's bone marrow extraction to this afternoon. That meant that Katie was not allowed to eat this morning and would not be allowed to have food or drink until 3pm. But at least there was a possibility that we would get some answers sooner than expected. That would be nice.

Just an hour later, I received another phone call from Amy. She had talked with the doctors again and been told that the blood sample that was drawn yesterday looked bad. The sample looked like it contained blasts again. It looked like the cancer might be back. The planned bone marrow extraction would now also include a lumbar puncture to test Katie's spinal fluid. Needless to say, I spent the rest of my day very stressed out. The last thing I wanted to hear was that the cancer had come back.

That was the last update that I had until after the bone marrow extraction was complete. At approximately 4pm, Amy and Katie returned to their room and I was able to get an update.
The extraction had gone off without a hitch and their was a little hopeful news. Apparently the marrow came out very easily and that is supposedly a good sign. It must come out harder when it is full of cancer cells. Additionally, the marrow looked healthy when viewed under a microscope. We wouldn't have any further information until the flow cytometry results came back.

Surprisingly, the flow cytometry results came back within the hour. They weren't expected to be read until Monday so our thanks go out to the doctor who put in the extra time to give us some peace of mind this weekend. The results were negative for any sign of cancer. What a relief that news was. Amy, who had been so solid as wave after wave of bad news rolled in, broke down on the phone as she passed along the good news. The relief in her voice was palpable.

However, now that we know that the cancer hasn't come back we are still left wondering what the real problem is. Whatever it is, it can't be as bad as if the cancer had come back.

Still Healthy but Still Low Too.

We got Katie's latest blood test results yesterday afternoon and discovered that her ANC, while climbing, is still low. She was at 299 as of Monday night. That is going to be enough to keep us home for Christmas and to keep some friends and family away. It seems like a bad thing, but when the alternatives are considered, I am very happy to be home for the holidays. It sure beats spending them in the hospital.

So what's going on? Why are her numbers so low and taking so long to recover? The doctors have shared some theories with us. They are considering the possibility that dosage levels are too high for the chemotherapy that she has been getting at home so they are likely to start adjusting the doses and watching to see how her cell counts react. There is also the possibility that the Bactrim that she has been taking as her anti-biotic to ward off pneumonia could be causing the low ANC. Apparently, that happens in some kids. The Bactrim will be the first thing to go. We were instructed not to giver her the next dose. Instead, they are goig to try a new anti-biotic when we next go back to Fletcher Allen.

Until then, she is free to stay home with us, and take absolutely no medications of any kind. This will be the first time in a long time that her little body will be entirely drug free. That seems like a nice Christmas present.

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.

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.

ANC Update

Katie's ANC is over 1500, so we are good to go for tomorrow. It was her hemoglobin that turned out to be low at just 7.2. So, she will be getting a transfusion tomorrow. Maybe she will get some of mine or Amy's blood since we both donated in Burlington just a short time ago and we all share the same blood type. All else aside, tomorrow is going to be a long day. With the transfusion and the LP and the infusion, Katie is going to be at Fletcher Allen from 10am until about 5pm. Then she will get some dinner and finally get back home around 8:30pm. Unfortunately, she doesn't think she needs any sleep to get ready for such a long day so she is still awake despite our best efforts to the contrary.

On another note, we started putting down some flooring today. A do-it-yourself job, it is not... Unless you happen to be adept at capentry which I am not. Larry, my cousin and carpenter for this job, helped me get one room all ready to go and get a few pieces of laminate flooring laid down so that I knew how it went together, then he had to leave for a meeting. I, thinking it would be a snap and the hardest part would be trimming around the door jambs, jumped right to work. I expected to lay in four or five rows, navigating around a couple of door jams until I got to the edge of the hallway and then I would stop. The hallway sounded a little too difficult to tackle on my own since Larry mentioned something about chalk lines and the grain of the wood following the hall. Well, after he left, I worked for about four hours, put in a whopping two pieces and cursed far more than just two times. In my own defense, I did cut one hole for a register and trim around 1 complete doorway and half of another. That was what was required to finish the one row that Larry had started as a demonstration. I could not for the life of me get the second row even started. It just wouldn't "snap" into the first row. It seems to have something to do with how straight I ran the first row, but the walls in this old house aren't straight, so I'm not sure what I need to do to fix this. I sure am glad Larry is coming back tomorrow!

Updates At Last

Sorry about the delay in posting to the blog. We had a busy morning of doctor's visits and a CT scan. We have been battling High temperatures, low blood pressure, a high heart rate, and extremely low blood sugar all morning. With these various conditions making her feel pretty bad, Katie was less than cooperative a good deal of the time. However, with that out of they way, I can sit down at a computer and pass along some information.

Despite having a morning blood pressure reading of 42 over 34 and a resting heart rate of 166, Katie is now in far better condition. Her last reading, about ten minutes ago, was 81 over 46 with a resting heart rate of 120. Those numbers are optimal, but they sure look good to us. Her sugar levels this morning were down in the 40's as well despite being on a glucose enriched IV all night. I am happy to report that her sugar levels rose to 112 after a light snack. Unfortunately, her sugar levels are very unstable and are prone to drop quickly for the slightest reason. We spoke with an endocrinologist today who explained that we can't know for sure what is causing her unstable sugar levels at this point because of her condition and the amount of drugs in her system. Therefore, we are just going to have to treat her condition when the problem arises and be aware of situations that will put her at the greatest risk for hypoglycemic states. She will be sent home with a testing kit and we will have to pick her finger every day for a while to monitor her glucose levels and try to keep her from becoming hypoglycemic.
Katie's high heart rate is a warning sign, but not something that the doctors are specifically trying to treat at this point. They believe that it is caused by her body struggling to deal with everything else that is wrong in her body and that it will slow to a normal rate when they get a handle on everything else.

Katie has been suffering from some stomach pains that have so far been unresponsive to treatments and the source is still unidentified. For that reason, a CT scan was ordered this morning and Katie's veins were pumped full of a dye before the scan to help the doctors see everything there was to see. The results... inconclusive. They found extra water around her stomach and on top of her diaphragm but the source of the water is unknown and it is also unknown if the amount of water is enough to cause a problem. It may be IV solution seeping out of her veins. The IV solution is definitely finding its way into various places in her body. Her face is all puffy as if she were having an allergic reaction, but it is just the extra fluid.

Hopefully, I didn't write this in a way that seems all doom and gloom. She does seem to be getting better. She is fever free at the moment with a temperature of just 36.7c (98.06F) and she is relatively content. As the afternoon and evening draw on, she will be watching a lot of TV, playing with some play dough and just hanging out. Much of the crying and whimpering in pain and discomfort has ended. So, we'll wait and see what tomorrow brings.

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.

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.

Good Energy And No Nausea

Things went a little smoother for Katie today. She didn't suffer from any nausea at all today, and she was perky and energetic while hanging out with her grandparents. Her appetite was good too, and she ate like any other two year old.

In addition to Katie having a good day at home, we received good news from her doctor today as well. Dr. Bradeen called this after noon to tell us that Katie's initial bone marrow and enzyme test results were in. First the bone marrow - Everything looks good after the initial tests. All of her healthy cells are growing back just as they should and there don't appear to be a high number of potential leukemia cells - blasts. Her marrow contained 2% blasts which are hopefully completely normal cells in the early stages of development. The flow cytometry test, which was sent out to John Hopkins will check those individual cells to determine if they are healthy or not. But the fact that the numbers are low, hints that they are perfectly normal.

As for the enzyme test, Katie tested normal there as well. She has all of the enzymes necessary to properly process her chemotherapy drugs and get therm out of her system. The enzyme test results are neither good or bad, just good to have. Knowing that she has certain enzymes allows the doctors to plan her chemotherapy accordingly.

Further Good News

"Blog, woman. Blog," my husband scolds. He is putting Katie to bed, and I don't expect him to return any time soon. It's a lengthy process involving many stories, and they are just getting started.

I am fighting fatigue myself, but there is very good news to report: Miss Katherine Grace made a trip to the lab for blood tests today, and the results are amazing. She has platelets to spare (123,000!), her hemoglobin is fine (9.9), and her ANC has jumped from 190 to 726. She has not had a neutrophil count this high in a long time.

I called the kind folks at Fletcher Allen today to express our gratitude and to tell them just how well Katie is doing. There is no way to explain just how happy I am to be home with two healthy children. The version of Katie I came home to after work today shares very little in common with the Katie who occupied that hospital bed. The Katie who lives in this house doesn't need to watch television because she is so busy playing. And eating. And laughing. Katie was out back in the swing when we made it home from school, smiling and celebrating our return.

Josh was right about "the happy tears," by the way, and he deserves credit for having inspired them. Katie was laughing last night as she ran between her brother and her dad. "Come to me now, Katie," Josh would cheer, and Katie would lurch in his direction, giggling and reaching out for his hug. It was a tender moment. I was happy to see Katie enjoying herself and using the muscles she needs to develop. Her strength is returning. The real beauty of the moment for me, though, was the joy I saw in Joshua's face as he encouraged his sister to run and celebrated her efforts. Most of the time, I have ordinary children who fight about toys and boss each other around. These were not ordinary children. The love reflected in those two smiling faces was real, and it was powerful. I was so proud of them, so fully in love with them. Joshua can make Katie laugh like no one else can. He is such good medicine for her. I can be hard on Joshua--he is five, and he is relentless--but there is such good in him.

I am a very lucky woman. I don't need a thing for Mother's Day this year.

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.

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.

Oh My! What a Day.

We left our house at 7am this morning, arrived at Fletcher Allen by 9:15 and didn't leave the hospital again until 4:30 this afternoon. We found out all sorts of information today, including the fact that a research facility that has been testing Katie's early marrow and blood samples has found what they believe are monoblasts, a symptom of AMoL, not ALL. This new information has changed how Katie's chemotherapy will be handled in the future. She will now be receiving a combination of drugs and treatments designed to kill off both ALL and AML.

Today was the first day of this new attack on Katie's leukemia. She received no fewer than 4 different forms of chemotherapy drugs today. She received 1 via a lumbar puncture and 3 via her new port. The port worked like a charm even though Katie screamed like a banshee as they prepared to access her port. She screamed as they wiped the site with alcohol, and continued screaming as they accessed the port but the screaming never intensified as the needle went in. I don't think she felt a thing, she just didn't want anyone near her "boo boo".

Everything just seemed to take forever as we waited for one fluid or another to drain from the IV bag into her little body. We are currently visiting with Grandpa Art and Grandma Kathy, preparing for our trip home. I don't think I'll have a hard time falling asleep tonight.

I'll give a longer update when we get home.