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.

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.

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.

Still Doing Pretty Well

Sorry, we skipped yesterday. Grandpa Jerry came home from his winter get-away in Florida and we visited with him until the only thing on our minds was the thought of crawling into bed and going to sleep. We simply forgot to blog.

However, Katie is still doing pretty well. Her mornings are getting a little rougher and nausea is never very far away, but her afternoons have been full of fun. She is enjoying the warm, sunny weather and getting out to play in her swing and on her trampoline. Granted, she is not jumping around, but she likes sitting and bouncing and that has to count for more exercise than sitting on the couch so we're happy.

No word on the bone marrow test results yet. I'm assuming that no news is good news, but I'm still going to call Fletcher Allen tomorrow just to make sure. Amy thought Katie was looking a little pale tonight and that we might be getting close to needing a transfusion again, but I don't think so because Katie had so much energy. She wasn't sluggish or logy tonight like she often is when she needs blood. I think we will be fine until the end of the week at least and we get her blood tested Sunday anyway just to be sure.

Katie got to bed a little earlier tonight, so I'm hoping that she will have a better start to her day tomorrow. It might be time to try starting the day with a little juice again too just in case her blood sugar is bottoming out in the mornings.

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.

Why The Delay?

Not that we were anxious to give Katie more drugs and make her feel bad again, but we were really curious about the results of the MRD test and we wanted to know what the hold up was. Well, we found out.

Early on I think I wrote that we had chosen to take part on a study where Katie would get a chemotherapy regiment that was being tested for its effectiveness. The doctors promised us that the tests were very controlled and very safe and that her health and progress would be monitored very closely to make sure that the leukemia was killed off as quickly and completely as possible with as few long-lasting side effects as possible. That part sounded good, but so did the next part.

Because the study is nationwide, and lots of doctors and scientists are trying to find better cures for leukemia, many people would be looking at Katie's test results and sending their data back to Fletcher Allen. Essentially we would be getting a free second, third or even fourth opinion on her test results at times.

Well, it paid off because that is what is holding us up right now. Two research centers currently disagree about Katie's last test results and those results determine her next round of chemotherapy. So her marrow is being tested and retested to make sure that she gets the best treatment possible, using the most accurate information available. I am very happy to be participating in the study.

Photos of the Day

Here are a few photos that I took at the hospital today. We arrived at 10:30 and waited until 1:30 before Katie went in for surgery. Remember, she hadn't eaten since 9pm last night. She was really good about food though and we got very few complaints from her today. We just told her it was a "hungry day" and that seemed to suffice. Three of these photos are of her and/or Amy waiting for surgery time to roll around while the fourth photo of Katie with her shirt off shows the incisions on her chest and neck where the doctors worked to place her new port. She has only complained about a little bit of pain, but we gave her Tylenol with codeine and that seemed to fix the problem. In a couple of days, her incisions will heal over well enough to get wet, and then we can move from the sponge bath back into the shower/bath. That will be a special treat.

A Hungry Day Again

Today we are off to Fletcher Allen for all sorts of procedures. Several of them require Katie to be under anesthetic which means no food. So here is a picture of Katie having one of her last meals. That slice of pizza in her hand is slice number three, and that is her second helping of Tater Tots, chicken nuggets and fish sticks sitting in front of her.

Katie is already up and she has had her sponge bath. We are now getting ready to shuttle Josh off to school and head to Burlington. We don't expect to be back very early today if at all today so the blog posts might be late or even tomorrow. Wish us luck with this port placement surgery.

Quick Update

Here's the plan, folks:

Josh will go to school Friday per usual, and he will thoroughly enjoy skiing in all our new snow. We will drop him off on our way to Burlington, and Nana will pick him up at the end of the day for an overnight at her house. Joshua loves sleepovers!

Rick and I will take Katie to Burlington together--a rare opportunity for us to spend time together. This will be, I'm sorry to say, a hungry day, and Katie is not likely to be happy about this wrinkle in her all-day bingefest plans. We need to be in Burlington by 10:30, but her actual surgery begins at 12:30. This probably won't be much fun for Miss Katie either, but she will officially be done with the induction process, and the port they will give her tomorrow should make life so much easier. Katie has just one more dose of steroids to take this evening before a hiatus from the madness. We all look forward to putting steroids behind us for a time. Assuming that Kate's pain is manageable, we will return to Barton for a quiet celebration of Katie's progress through this adventure. Josh will go to basketball in the morning, and life will continue as normally as is possible at this time.

We may not have time or opportunity to write tomorrow, but we will share any information we receive when it comes in. The doctors will do a bone marrow aspiration and a lumbar puncture. They continue to look for leukemia cells in Katie's marrow and in the cerebrospinal fluid. They will also search for Minimal Residual Disease. Basically, they will look for damaged chromosomes again and work to confirm that Katie's leukemia is in remission. Keep your fingers crossed. It is absolutely amazing what the human body can withstand. It is absolutely amazing what doctors can do to support the body's efforts. We are grateful both for the miracle of modern medicine and for the miracle of Katie, who continues to waddle through her days with a cranky je ne sais quoi. What a character!

Happy Valentine's Day to my little family and to yours.

A Long Night

Katie decided that sleep was not as important as food last night, and she kept us up most of the night asking for and then demanding food every hour on the hour. I hate steroids. The steroids make her hungry around the clock, and now that she is starting to feel better and have more energy more of the time, she wants to act on that hunger more and more. My little girls is plumping up faster than a Butterball turkey. Her latest craving is for mozzarella cheese, and she can't get enough of it. She is capable of eating a pound in one day and asking for more.

Since she was up almost all night, guess where she is right now... She is in my bed, fast asleep. But, she didn't go down without arguing about whether or not she needed more cheese first. *sigh*

Yesterday's visit to the Clinic was good. They change the dressing on her PICC line and just did an overall check-up; no additional drugs. Then they discussed her progress with Amy and told her a little bit about her treatment plan for the future.

Apparently, the bone marrow test coming up in two weeks will confirm whether or not she is in remission. As of right now, it looks like she is in remission, but that next test will either confirm or dispute it. Remission was redefined for me yesterday. I had always believed that remission was the stage when all signs and symptoms of cancer had disappeared. The doctors at Fletcher Allen have a slightly different definition. They define remission as a reduction of the detectable disease even though some cancer is left in her body. I don't like their definition.

As for the future, we have a choice to make soon and I believe it is an easy choice. We have been participating in a study with Katie's treatment so far. The doctors have been giving her drugs and doses that are known to kill the cancer while at the same time upping the dosage or giving her additional drugs to see if they can kill it faster without making her too sick in the mean time. It seems to have worked. Now that she is in an unconfirmed remission stage, we get to choose whether we want to stay in the study or just go on to standard treatment.

The messed up chromosomes that are the cause of Katie's leukemia do not fall into the easiest to treat category, but they do not fall into a hard to treat category. They are somewhere in between. Therefor, the doctors are recommending that Katie stay on the study and get a slightly more aggressive form of chemotherapy during the next stage of the treatment plan, especially since her body was apparently able to handle higher levels of toxicity without getting really sick. We have been told that other children spend much of their time vomiting and feeling really horrible during the part of the treatment that we have almost completed.

I believe that the study has really worked out well for us, and I am all for aggressively going after every last bit of cancer in her body if her body can handle the drugs that the doctors are going to pump into it. I don't want to see this little girl have to start all over because the cancer survives and comes back again a few years down the road.

Signs of an Early Responder

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

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

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

Friday Update

Today is the first day of Katie's official chemotherapy treatment. She actually got her first dose of chemotherapy yesterday during the bone marrow extraction, but that was a generic treatment that would have a positive affect on whatever form of leukemia she had. The new treatments beginning today are designed specifically to attack the form of leukemia that was found in her bone marrow.

Katie hasn't had any real side effects from yesterday's treatment. She has only experienced a small tummy ache that has diminished her desire to eat a little bit, but we have been assured that it is only temporary. A side effect of another one of the drugs she will be getting is that she will end up with a serious case of the munchies.

She is becoming accustomed to all the doctors and nurses that keep visiting, testing, and medicating her. Her IV was replace with a PICC line yesterday during the marrow extraction. The PICC line is more durable and more useful than the IV and it allows blood to be drawn without using any more needles. She was actually able to sleep through her blood withdrawal this morning.

The PICC line is also placed in her upper arm instead of in the veins at her wrist, so she has a lot greater freedom of movement. She has been playing, crawling, and even trying to jump in her bed.

She has been taking her medicine as if it were candy. Anything that needs to be taken by mouth goes in effortlessly, and usually in a mixture of drugs/melted popcicle. She likes the red ones.
One of the doctors told us this morning that they are expecting Katie to respond well to the chemotherapy and have scheduled her next bone marrow extraction, which is next Friday, as an out-patient treatment. We like the atmosphere here at the Vermont Children's Hospital, but it would be nice to take her back home too. So, we are crossing our fingers.

We have also been told that she is expected to get sicker over the next couple of days as her body learns how to deal with all of the different chemicals and all of the dead leukemia cells. The chemotherapy should kill off one to one and one-half pounds of leukemia cells in the next 48 hours. Given the fact that she only weighs 24 pounds, a pound of dead cells is a significant portion of her overall body weight.

Katie also had her first of many transfusions last night. The idea of a transfusion, or even of needing one is frightening. However, after watching her get the transfusion last night and seeing how much more life she had after the fact, I am thrilled. She went from a lethargic, pale, child to an energetic, animated bundle of wiggles after about twenty minutes of transfusion. The whole process took about three hours and she was asleep by the end of the transfusion.

Thank you to everyone who is already pitching in and helping out. A special thanks goes out to Robin Kay (Nana) for taking care of Katie's brother, Josh; and to my parents for taking care of the dog; and to Gerry and Cindy for taking care of the house; and to everyone else who is doing what can be done to make this difficult time easier. Thank you.