News to Celebrate

Way back on December 4th, we discovered that Katie was neutropenic. At the time, our biggest hope was that she would be out of the hospital for Christmas. Eight weeks later, she has finally recovered from her nuetropenia, regained a functional immune system and can resume the life of a normal and healthy 3 year old child. Blood tests at Fletcher Allen today showed that Katie's ANC, which had been only 220 last week had climbed to 1040. Anything above 500 would have been great. 750 is the minimum to restart her chemotherapy. Over 1000 is absolutely great! Of course, with numbers as good as that, the at home chemotherapy began again tonight. She received her first pills just before bed, but I digress.

So what did she want to do to celebrate the return of her immune system? She wanted to go to a book store. We went to Barns & Noble. She navigated the aisles of books for nearly an hour, picking up this, and thumbing through that, and the entire time, talking to anybody she came across. In the end, she decided to buy nothing, but she insisted that she was happy. She got what she wanted finally and what she wanted was to just be around people.

As it so happens, she requested a very special outfit last night when we were laying out clothes for today. She wanted to wear a beautiful red dress with red tights and shiny black shoes so that she could show it off to everybody at the hospital. She spent the day posing for doctors and nurses and had to take her coat off to pose for perfect strangers in the book store too. She was in her glory and I am glad that I was there to see it.

Tomorrow, she could finally go back to day care to play with other children again. But as luck would have it, her day care is closed tomorrow so she will spend one more day with her grandparents. She has enjoyed spending time with her grandparents, but she is eagerly awaiting Monday morning.

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.

End of the Week Information

There are fewer posts on here than I expected to see. I thought Amy had been updating the blog for the last couple of days but I see that wasn't the case. I apologize for the lapse.

Wednesday was a snow day for us. The whole family got to stay home from school and we spent some quality time at home relaxing. Katie was feeling good and was being playful.

Thursday, Amy and Katie went to Fletcher Allen for a follow-up appointment after last week's adventure. The blood tests revealed that Katie's ANC is still low, very low. Her ANC now rests at a whopping 40. Neutrophils that have in the past made up more than 40% of her white blood cells are now only 2% of her white blood cells.

The infection that manifested as a single sore inside Katie's mouth has spread. She now has several sores on her lips and what looks like several more sores developing on her face. At first they just look red and round - like small incidents of acne. But one on her chin has opened up and is now looking more like the sores on her lip than any acne that I have ever seen. The doctors said that the spots on her face could be some kind of reaction to the medication that she is taking now, so Amy and I are going to try giving her a little Bennedryl tomorrow to see what happens. I don't think it will do anything, but at least it will rule out the possibility of a reaction.

Ushering in The New Year in The Hospital

Well, we managed to stay out of the hospital for Christmas, which was exactly what we wanted and all that we hoped for. Be that as it may, New Year's day was just spent at the hospital.

Katie had a New Year's eve chemotherapy appointment yesterday. The night before, she had run a low fever while sleeping and then vomited just once and only a very small amount that morning. That was our first sign that something wasn't right.

She received her scheduled chemotherapy and the doctors checked her over from head to toe while waiting for the blood counts to come back. The counts came back quickly and with disappointing results yet again. Katie's ANC had dropped again to 140. The doctor found nothing wrong with Katie other than her chapped lips which we explained had developed rapidly in just the last day. There was no explanation for the low grade fever, the vomiting, or the low ANC.

In the not so distant back of my mind I was starting to wonder if maybe the leukemia was coming back, but it was a fear that I didn't really want to address. However, I asked the question anyway. What could be causing all of this? The answer was that they don't know, but a resurgence of leukemia cells could potentially be responsible. The doctors want to pull some bone marrow Monday morning to see if that is the case. On the other hand, other possibilities do exist. Another is that the bone marrow may not be working correctly. Apparently, it is possible to permanently kill off certain functions of the bone marrow while leaving other functions fully operational. They want to study her marrow to make sure that the cells responsible for making neutrophils are still alive and well. The consequences of dysfunctional marrow are not something that I want to think about right now. Of course, there is also the ever present explanation that Katie could just be fighting off something that we haven't detected yet. That explanation, unfortunately, was starting to wear thin.

However, this morning, after another night of low grade fevers, we glimpsed a potential light at the end of the tunnel. This particular tunnel gets a little darker before it gets lighter. Katie woke up with a massive sore in her mouth and lips that look like the shed skin of a garter snake. If you want a closer look, click on the picture to the right. I uploaded the full sized picture for those of you who want a real good close-up.

This infection is a good thing. Finally, she has a real infection! Here is something that is treatable and potentially causing Katie's neutropenia. That is the upside; the light at the end of the tunnel. If this sore is finally identified as a manifestation of a systematic infection then that could be her only problem. Her marrow could be fine. Her leukemia could still be in remission. Things could still be OK.

But remember, the tunnel gets darker before it gets lighter. Katie is still neutropenic. She also now has a definite infection. That means she is now a resident at Fletcher Allen Hospital until the infection is under control and her ANC recovers. She was admitted today, New Year's day, and is now back in her old room again on the fifth floor of the Baird wing. Because of the open sore and the neutropenia, she will not be allowed to go to the play room and enjoy herself. She will be confined to an isolated room with Amy for the next few days unless she wears a protective mask and then she is only allowed to take a walk in the hall but not to touch anything. Nobody wants Katie to pass on whatever she has to the other children on the floor.

Katie is not all that happy about being back in the hospital. It was a surprise to all of us and she was not mentally prepared for it. She fought with the nurses as they accessed her port this afternoon and then went into a quite, protective state in which she ignores the world around her and just shuts down. She stares quietly off into space or at the TV but will not interact with the doctors or nurses. She even ignored Grandpa Art and Grandma Kathy when they came to visit tonight. I was able to perk her up a little when I called the room tonight to wish her a good night. At least she talked to me. Hopefully, this will be a short stay and the doctors will get this infection under control quickly.

I'm still anxiously waiting for the bone marrow test Monday, but I'm hoping this infection is the real source of her troubles and the end to some of our worries.

Uninspiring Test Results

Katie was back at the hospital yesterday afternoon for another blood test, again hoping for a rise in her ANC. However, it was not to be. Amy recieved the phone call today at school and learned that Katie's ANC is still low. In fact, it dropped again and is now resting at just 115. However, her overall white blood cell count is climbing and her monocytes (the part of the white blood responsible for making neutrophils) are climbing as well. So the current prediction is that Katie's ANC will be much higher by Friday which is when she goes back in for another finger pick blood test.

I think she has an angel looking over her shoulder right now, doing everything in her power to keep Katie out of the hospital. It was a full 14 days ago today when we discovered that her ANC was dangerously low. 14 days ago, the staff at Fletcher Allen thought we would be coming back for an extended stay very soon. We aren't out of the woods yet, but I already feel very lucky that we didn't have to spend these past 14 days in the hospital waiting for her ANC to rise.

The Little Things

Katie was back to having a fairly normal day in the hospital again today. Her ANC is still about 30. Her hemoglobin dropped a little lower down to about 9.8. Her platelets dropped a little lower too, but neutrophils and monocytes are still slowly increasing in number. She feels fine except for a nasty cough that she has now. The cough resulted from the unwelcome return to the hospital Tuesday night and all of the screaming that went with it. She had such a coughing fit at one point this morning that she vomited. Unfortunately for Katie, she was not in her room at the time and therefore she was wearing a mask over her mouth and nose at the time. It seems like a rather unpleasant experience. The doctor thinks she has reactive airways and plans on treating her with a nebulizer or an inhaler. They took chest x-rays to be sure and the initial results don't show anything wrong with her lungs. She is also dealing with a little acid reflux but that should be easy to treat with one of the medications that she has already had in the past. At home she doesn't like the taste of it, but in the hospital it can be run through the IV.

I just called for a further update, but I got shooed off the phone because they were busy playing in the play room. So, I guess they are having a good time and Katie is feeling pretty well this afternoon.

An Update From The Hospital

I'm doing a quick update from the Ronald McDonald room in the hospital with Katie on my lap because I just checked to see if Amy had updated the blog and found she had not.

Amy went home last night to get ready for the first day of school. Katie and I are still at Fletcher Allen and we are going to continue to be here for at least a couple more days. Her hemoglobin is up a few points to 10.4 but her platelets have dropped down to 15 and her ANC is 20. One positive sign is that her neutrophils are up from 0% to 6% and that typically means that cell counts are about to start climbing.

Katie spent most of the day today feeling kind of blah. I think she was a little sick to her stomach. She never vomited, but after several hours of blah I asked for her to get some Zofran and five minutes later she was ready to eat and ready to play. It made a big difference.

Because Katie isn't running any fevers and has no sign of illness, the doctors might let us out of the hospital sooner than expected, but they also said that at such low levels, they can't let Katie get as far away as home. They might be willing to let us stay with Grandma Kathy and Grandpa Art for a few days instead. We would still be stuck in Burlington, but at least we wouldn't be in the hospital anymore. Anyway, that was one option mentioned this morning, but it hasn't been mentioned since so I'll just wait and see if it really happens.

The Numbers are Still Climbing

Katie's ANC is still climbing as of this morning. It has now reached 110. I am ecstatic, but that number just can't climb fast enough for me. Amy is feeling the same way and she has already asked the doctors to reduce the number of antibiotics that she is on, but the doctors want to keep her on the current levels of antibiotics until Katie's ANC is at least 500. Keep climbing Katie. Her platelets are up to 74. Her white blood cells are up to 740 and her monocytes are up to 39%.

Despite her cellular numbers climbing, she doesn't appear to feel any better today than yesterday. She has spent most of her morning snuggling in her mother's lap or resting in her birdie nest. She is playing opossum whenever someone enters the room. She closes her eyes and pretends to be asleep so that people wont bother her.

We are getting a bit anxious now because it seems like we can see the light at the end of the tunnel and we can definitely see the negative consequences of this many drugs for this length of time. Its time to bring her home.

ANC of 10?

Katie was lying in bed, looking lethargic and feeling pretty bad when I got to the hospital last night. I was really quite shocked to see her like that since the last time I saw her awake she had been running around and dancing. Apparently, the all day fever was really taking its toll on her little body.

The highest temperature she reached yesterday was 101.3 and by the time I got to the hospital, her temperature with Tylenol was down to 99.8 but her entire body was aching and sore to the touch. The most impressive number I heard last night had nothing to do with her temperature, but everything to do with her blood tests. She is considered neutropenic if her ANC (a portion of her white blood cells) drops to 500 or below. At that magic number, she essentially has no functioning immune system left. Since this ordeal has started she has dropped below 500 many times, but usually, she would drop down to around 200 at the lowest. Yesterday's ANC was a whopping 10. I didn't even know that it could drop that low.

As a precautionary step, the doctors have placed Katie in a special isolation room of the hospital. It is a room separated from the hallway by another specially filtered, sealed off entry-way. On our first visit to Baird 5 back in January, we often walked by the isolation room and wondered who was in there and how sick you had to be to end up in there. Now we know.

At the time of this writing, I am assuming that Katie is still sleeping. Amy spent the night at the hospital with her, and Josh and I went to my brother's house. I haven't called the hospital yet because I don't want to wake them up. I'll call for an update around 9am. Katie should be up by then.

Lab Results

For anyone out there who is interested in the nitty gritty detail. We have some lab results to share with you. These results are from yesterday's blood work, and they are what prompted the transfusion last night.

Everything in red is low
Everything in orange is high

WBC=0.46 (NORM=5.5-15.5)
RBC=1.89 (NORM=3.9-5.3)
HGB=6.2 (NORM=11.5-13.5)
HCT=17.8 (NORM=34-40)
MCV=94 (NORM=75-87)
MCH=32.9
MCHC=34.29
PLT=64 (NORM=156-312)
RDW-CV=17.2
Absolute Neutrophil Count=200

I should do some more research, but for now all I know is that the WBC is her white blood cell count, the RBC is her red blood cell count, and the HGB is her hemoglobin count.