Our Plans Changed in an Instant

In the last post I wrote that Katie was feeling good and was looking forward to a vacation of rest a play. We were even planning a trip to the mountain for a little skiing. That didn't happen. The night that I wrote that post, Katie became ill and was vomiting from 3am on. By 9am the next morning, she had a fever of 104.3 and we were off to the hospital. Our first stop was North Country Hospital where her blood counts revealed some serious underlying problems. Her total white blood count was .2 or 200, her ANC was nonexistent, and her hemoglobin was 7.4. Everything else was just as low. She was then loaded into an ambulance and sent to Fletcher Allen for further treatment.

Once at Fletcher Allen, Katie recieved mega-doses of antibiotics just in case, and a transfusion to get her numbers up and out of the dangerously low levels to which they had dropped. She was also given simultaneous doses of tylenol and ibuprofen to stop the fever from rising any higher. It hadn't responded to a dose of only tylenol earlier. Katie was then kept at Fletcher Allen as an in patient in the children's hospital for the next two nights until she no longer had a fever and her blood counts seemed like they were rising on their own. She was released from the hospital today.

Katie is still neutropenic and not allowed to go anywhere without a mask on, but since her body seems to be recovering and no longer in need of the IV fluids or other maintenance drugs, she was allowed to leave the hospital and finish her recovery at home. We didn't actually take her home tonight though, instead choosing to stay in Burlington one more night with Katie's Grandpa Art and Grandma Kathy. We brought her here directly from the hospital and she immediately took a 3 hour nap. It is hard to sleep well in the hospital with nurses checking on you around the clock.

Tomorrow morning, we will actually head for home where Katie will be allowed to spend the next couple of days until returning back to Fletcher Allen for a follow-up and her first half-strength doses of chemotherapy again.

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.

Surprise Update

I'm not sure how I feel about this, but the doctors just gave Katie the OK to go home. Her ANC has climbed back to 450 and she is looking and feeling better. It seems a little soon to me to disconnect her from the IVs that have gotten her feeling better and put her on something else to take home, but I'm also glad that she is feeling better again. Amy and I are debating whether or not to stay with her parents in Burlington for a day or so until we are sure that Katie is fine.

More Than a Simple Fever

Katie was transported by ambulance from North Country Hospital yesterday afternoon to Fletcher Allen Hospital where she spent the night last night and will apparently be spending several more. Her fever came and went throughout the day yesterday, but more concerning than that is the fact that she still has pneumonia and a nasty ear infection even after 10 days on antibiotics that she was taking specifically to cure those two problems. In addition, her blood counts have dropped.

The initial blood tests yesterday indicated that her ANC was just 420 again, considerably lower than it has been since the last precipitous drop back in January. This morning's blood counts show that her ANC has dropped even further, down to just 280. Her platelet and hemoglobin numbers are also low, although I have forgotten the exact numbers already.

We don't know exactly what we are in for yet, but it is starting to look like Katie may be in the hospital for many more days. On a side note, yesterday, her first day in the hospital, was the first official day of our summer vacation.

New Numbers

We took Katie to North Country Hospital yesterday afternoon for a finger pick blood test. She handled this one exceptionally well, crying only when her finger was picked, but happy and pleasant leading up to it and even after as the nurse was collecting the dripping blood in a small vial. Just an hour ago, we got the phone call telling us what her new ANC is. Last week she was at 4210, and after a week of chemotherapy at home, she is not at 2800. The doctors would like her to maintain a target of 1500 to 1700 so her at home dose of chemotherapy is going up. Since recovering from her last bout of neutropenia, she has been on a 50% dose of what she had been getting prior to becoming neutropenic. Now, she will be getting a 75% dose. Hopefully, her body will be able to handle it.

4210!

I received the phone call yesterday afternoon while still at work. Katie's new ANC number is 4210! We are thrilled. However, that number is higher than the target number set forth by the doctors and they will likely increase the chemotherapy doses after one more blood test next week.

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.

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.

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.

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.