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.

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.

QPD: Naked Soccer

I will admit it: I have been really edgy lately. I am tired of the madness. I know that we have a lot to be thankful for and that our situation could be much worse. Katie feels fine. But I do want some peace of mind and a return to the joys of Maintenance that we experienced this Fall. I want neutrophils. I want my kid to be a kid. I want us to do kid things.

We think Katie is a champion kid, of course. She is a dress up queen and a dancing fool. She loves art projects and books and dolls. She doesn't let much get in the way of her own personal celebration of childhood. We continue to look for ways to support her efforts, as illustrated by one of my recent Questionable Parenting Decisions (QPDs). I thought I would share thed Naked Soccer story:

Katie has a Nerf soccer ball, and she often plays with it at home. She insisted that we had to bring it to Burlington, and I relented, despite the difficulty of fitting it into my purse, which was already full of all her other favorite goodies. (How many children bring Dora lunch boxes full of Play Doh to the Children's Specialty Center? I would guess that there are a lot of them!) Anyway, after a port access that was nothing short of traumatic--the nurse was great, but Katie just panicked--and a terrible movie (the Barbie version of the Dickens classic A Christmas Carol--yikes), Katie decided that it was time to play soccer. She scampered about the infusion bay clad only in Strawberry Shortcake underpants, pink toenails flashing as she kicked the ball while directing the nurses she had drafted into a very bizarre soccer league. ("You stand by your chair, and Mommy will stay here. I'll be the other part of the triangle.") "Only Katie," I thought. I probably should have dressed her. I probably should have spared the nurses. We were noisy. We were dangerous. We added chaos to the proceedings in the infusion bay. We interrupted traffic in the hall. I let it all go. I let her play. I encouraged her, actually, because she was having fun.

This was probably not my best parenting moment. I should have set some boundaries. Katie will read this story many years from now and wonder why I let her zip around naked in public. I let you cause chaos, Miss Katie, because you were happy, because you relaxed for a few minutes in the midst of a long day, because for once you forgot about your port and ran around with both arms at your sides, laughing and smiling. For the record, it was worth it, and I would do it again. I'm just sorry I didn't get a picture.

Friday Update

We survived the rest of the week but just barely. Josh did end up staying home from school on Wednesday. He still had a fever when he woke up in the morning, and he was coughing. He and Katie both stayed with their grandparents, and they enjoyed the day. Katie was animated and energetic, and the sores were improving. We thought we were making progress...but we were also distracted by other commitments. This week was midterm exam week at school, and Amy and I have been very busy.

Thursday found us in Burlington. Katie had an appointment with Dr. Bradeen and crew at Fletcher Allen, and she met an infectious disease specialist. We hoped he would be able to identify this thing that Katie is fighting. Unfortunately, we still don't know what caused the sores, and her ANC remains very low. The sores on her face have cleared up for the most part but her lips are still quite sore and the focus of a lot of attention. Her energy levels ebb and flow from day to day but that may be based more on how well she sleeps the night before than on anything else. She has a lot of nightmares now, and she wakes up at least once every night crying out about something she is afraid of at the hospital. Last night it was the finger pick.

Another bone marrow extraction has been scheduled for this coming Monday, 1/19/09. The doctors are still edgy about the possible causes of the absence of neutrophils, so they want to compare this next bone marrow sample to the last one to see how things have changed in the last couple of weeks. They also want to send another sample off to John Hopkins for a more detailed inspection, which of course means they are still looking for signs of cancer. The roller coaster emotional ride never seems to end.

To top things off, my mom called school late this afternoon as Amy was working on some grades. Katie had a fever. We went home for an ear thermometer and changes of clothing. We were convinced that the other shoe was about to drop. It was a tense and quiet ride to Newport. As it turns out, the fever was gone by the time we arrived, and Katie provided the clue we needed to determine what had caused her temperature to rise. She told us that she had had a headache and that she and Grandma had fixed it with some juice. Our old friend blood sugar. Grrrr. The good news is that we are home for now and have some time to wrap up grades before making the trip on Monday, which is a vacation day. It is a relief to end the night at home and not in the ER.

Two Kids Sick!

Katie's struggle with this virus continues. For the past three days I have been applying medicated Blistex lip ointment to her lips and a little to the sores on her face. The sores on her face are looking much better. They have dried up and the red areas around them are shrinking. Her lips are looking a little better too. However, during a close inspection of her lips tonight I found another new sore on the underside/inside of her top lip again. This one doesn't seem to bother her as much as the previous ones and she did let me touch it to apply a little Blistex to the outside of it. I'm curious to see how this one will progress now that the other sores seem to be getting better.

Josh is also sick tonight. This morning he complained of a headache, but we thought it was from lack of sleep since Katie had woken everybody up last night during a bad dream. In her dream she was screaming and saying "Don't take me to the hospital!" None of us got much sleep last night. Tonight, as we were putting Josh to bed, Amy noticed that he felt warm so she took his temperature. He has a fever of just over 100 and he is complaining of the headache again. We'll keep an eye on him through the night and see how he's feeling in the morning. Maybe my parents will have two kids on their hands tomorrow...

Still Coping

Katie had a restful weekend, and shook off some of the nocturnal habits that she was displaying by the end of last week. She is still sleeping heavier during the day than at night but she is getting some balance back. These days of being cooped up with her grandparents, unable to go anywhere or play with any other kids, are schedule altering. She gets bored with nothing to break up her day and she ends up watching a lot of Dora videos and reading a lot of books. She can only watch so much TV and read so many books before the desire to nap overwhelms her. Then, with no reason to wake up, her naps last for hours and by the time bed time rolls around she isn't tired. We all look forward to her getting back to a normal routine some time in the future. We just don't know when that future will be.

The sores on her face and lips are about the same. One heals, another begins to form. I don't think we are making any real progress. One of our readers, Sarah (www.allaboutmollie.blogspot.com), suggested Clindamycin because it worked for her daughter Mollie when she was suffering from something similar. We will ask the doctors about it this Thursday when we go back for another follow-up. We have also been trying warm, moist compresses and most recently some Blistex medicated lip ointment for cold sores. With any luck, some of this will start working to clear up this infection.

A Face Full of Sores and A Swim Suit in January

 

This is Katie as she was playing around the house this evening. Prior to the beach look, she was wearing a princess outfit, but then she declared that she was going to the beach. The next thing I knew, she was parading around the room in her swim suit, grass skirt, sunglasses and hat. The photo op. was too good to pass up.

The sores in her mouth and on her face are about the same today as they were yesterday. She isn't complaining about pain, and she is eating well, but she isn't happy with the creams and ointments that we have been using on the sores. Nothing seems to be helping much any more. We are just waiting it out at this point.

Katie is willing to soak her chapped lips with a warm washcloth, a strategy we are using to encourage the health of her skin, but it is hard to pin her down long enough to make her use the washcloth strategy. She is simply too busy. She watches less television each day. We take this as a good sign that she is feeling well despite all the ugly sores. She is the arts and crafts queen lately--painting and beading were two of her favorite activities today--and she likes to "write." She records her observations in small notebooks, and she uses my laptop. She tells me that I cannot interrupt her while she is working on her "projects." She is actually learning to recognize some letters, and I am thrilled, but it is her attitude as she works on these projects that I really like. She is so determined to do what her brother can do. She wants to be an adult NOW. She is so eager to learn. She will be a great student some day if she can avoid driving her teachers crazy. I'm simply happy to note that she has more energy today than yesterday and that she is growing up quickly in her own quirky way.

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.

Doing Better

Katie slept through the night last night without medication. She fussed a couple of times in the night but never woke up crying. She even woke up in a much better mood this morning and was generally cooperative. Her lips and mouth are looking even better this morning. It seems like things are moving in the right direction.

Healing a Little More

Katie had a good day with Grandpa and Grandma Kelley today. She fussed very little and was quite content. To top it off, she lost the dry, dead skin that was covering her upper and lower lips and hiding what was really there. Her lips look much better and some of the swelling has gone down too, but with the dead skin out of the way, we can see what is left of another open sore that had formed on her upper lip. Apparently, the first sore spread. Despite being able to see the sore now, she is looking much better than yesterday. Maybe tonight she will sleep through the night without pain medication at 2am.

She is Tough

She is indeed tough -- and still mad too. Katie is slowly recovering from the infection that has manifested as the sores in her mouth. Her lips are looking a little better and the sore inside her mouth is shrinking. The sores still hurt though, as evidenced by her behavior. She is still mad at the world and is prone to emotional outbursts directed at any and all people in the room for reasons as small as "he talked to me" or "I'm not hungry". She also isn't sleeping through the night. She is waking up at least once in the night crying because her mouth hurts. Tylenol and Liticain usually work quick though and she is back to sleep in 10 minutes or less.

Grandpa and Grandma Kelley picked her up this morning and are going to stay with her while we are at work until she recovers enough to return to day care. I hope they have good luck today and manage to avoid the worst of her outbursts.

Day 1 Back at Home

We arrived back at home with Katie last night around 7pm. She was tired even after sleeping in the car for most of the trip home. She watched a Dora video and relaxed a bit before going to bed. This latest stay at the hospital was one of the most emotionally traumatic that she has ever had. She was mad at the world for the entire time she was in the hospital. This morning she is starting to act more like her playful, pleasant self. However, she has made it clear that we are never supposed to bring her back to the hospital again.

Her mouth sore is a little better this morning but it still hurts her. She cried at breakfast when some food touched it. One of her medications for the sore contains some Liticain to lessen the pain and that helps tremendously. We have to apply that every hour for now to keep her suffering to a minimum.

Today is our last day of vacation. Tomorrow we go back to work and Josh goes back to school. Katie is scheduled to spend the day with Grandma and Grandpa again. Lucky for us, they are still able to watch her during the day until she can go back to day care again.

She's Coming Home

Now that the return of cancer has been ruled out and her infection is responding well to treatment, the doctors are sending Katie home again. We have been told not to expect her ANC to rise for another couple of weeks, but they don't expect any additional problems. It looks like this was all just one big scare and I for one am glad that it is over.

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.

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.