The Common Cold

Things have been going reasonably well for Katie lately. She has been going about her normal routine of playing with her friends at daycare all day and zooming around the house playing at home each night. Markers and paint are her creative release of choice lately. Unfortunately, her body and her books have become her favorite canvas. She has colored or painted on herself and her books no less than eight times in the last ten days. I'll post some pictures the next time she gets creative.

In the last couple of days she has taken a turn for the worst. She developed a nasty cold over the weekend. It is restricting her airway again and making it hard for her to sleep at night. We can easily identify the source of this cold... Every kid in her day care suddenly got sick over the weekend. Unfortunately for Katie, while her body is busy fighting off this cold bug, we are going to give it more things to have to deal with. She has an appointment for another dose of Vincristine and Pentamadine this Thursday at Fletcher Allen. So, by the time she should be recovered from her cold, the Vincristine will be making her nauseous. Her doctors asked us to get a blood test done last night to ensure that her body had the resources to fight back, and it does. Her numbers look really good and all of the right numbers are elevated, indicating that she is fighting the cold. The next 10 to 14 days are just going to be a little extra rough.

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.

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.

Still Neutropenic

We took Katie to North Country Hospital again yesterday afternoon for another blood test to count neutrophils. The results came back today. Her counts are up a little, climbing from 120 on Monday to 260 yesterday, but she is not out of the woods yet. She will get tested again on Wednesday and hopefully her counts will be up over 750 by then. Either way, it looks like she will spend another week out of day care. She is taking it well. She is happy to spend her days with her grand parents but she does say that she misses her friends. At least she is still feeling good and doing well aside from the low ANC.

Weathering the Storm

Katie went to North Country Hospital Monday afternoon for a follow-up blood test to see if her ANC had recovered at all yet. Unfortunately, the results showed that she had an ANC of just 120. So she is no closer to getting her immune system back in working order. However, my illness (My means Rick in this instance) has run it's course and I an now feeling better. I even went back to work today and Katie shows no signs of coming down with what I had. The official results are not in yet so I don't yet know for sure if it was the Flu, but it was nasty and unpleasant and I am very glad that she doesn't have it at this time.
My parents in Newport have been taking Katie every day because she can't go to daycare with her numbers so low. They are really going out of their way to help us out. They drive here in the morning to pick her up and they drive back in the evening to drop her off. We are especially thankful for their efforts.

Climbing Numbers

After school yesterday, Amy and I took Katie to North Country Hospital for a finger pick blood test. Those test results were sent to Fletcher Allen and this morning Fletcher Allen called us with the update. Katie's numbers are headed in the right direction. Her ANC is up to 300 today from the 100 it was hovering at Tuesday. Her Hemoglobin is up to 9.1 and her platelets are up to 108. That means she will not need a transfusion at all this week so we won't have to take her back to a hospital until a week from Tuesday. Thats when her blood counts will be done again to make sure that her counts are high enough to begin maintenance treatments. We could have started maintenance this very next week, but they asked if we wanted a week off and I took it. One week won't make much of a difference if it is added to the end of this next two year process, but it will make a big difference right now.

Katie is doing great at home. She is eating better, she is playing more and she is walking again. We are still sorting out the constipation issues. She is on a daily dose of laxatives, but sometimes several days go by with no poop and then she will go six times in one day (all liquid) and then stop again for several more days. We are having a hard time making her regular again.

In addition to giving a Katie update here today, I would like to take this opportunity to say hello to Mollie and Sarah. Mollie is 4 and she was just diagnosed with ALL in June. She and her mom have been reading this blog and have created a blog of for Mollie at www.allaboutmollie.blogspot.com. Amy and I will be sure to check it out.

Home At Last

Katie is home. She made it through the night without spiking a fever. We went back in to Fletcher Allen at 10 am this morning to have one more blood sample drawn and to have her port deaccessed just as we had planned. Deaccessing was over in seconds and we were on our way home. She slept most of the way home. Now that she is here, she has had a nice lunch and watched a movie and now she wants to go for a walk. It's good to be home.

We take her to North Country tomorrow after school for another blood test to determine what comes next. Her current numbers are as follows:
Hemoglobin, 8.6
White blood cells, 42
Platelets, 59
ANC, 100 (down from 160 yesterday)

ANC Update

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

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

Time to check the ANC

Katie is having a fine morning. Her blood sugar started out low at 63 but she has been eating and drinking well since she got up and she appears to be feeling fine now. We are now getting ready to head to North Country Hospital for a quick blood test to determine what her ANC is today, and then we're coming back home to rip out some old carpeting and put down some laminate wood flooring. Tomorrow, we head to Fletcher Allen for more treatments if her ANC is still high enough.

The Promised Details

We are finally home 12 hours after leaving the house this morning. It was a long day, but it went well. Katie didn't have any low sugar problems this morning. She woke up in a great mood, ready to face a hungry day. I got a little apple juice into her before the cutoff time for liquids and we headed out. We had to be at Fletcher Allen by 10 so that they could run an IV with glucose for her to keep her blood sugar up while we waited for her actual appointment. By the time the IV was in, her glucose level was 64. Below 60 is considered low for her so we just made it. After an hour of so of the IV her glucose level was 109. We got the rest of her numbers back too, and a couple of them were interesting. For some reason that nobody explained and I didn't ask, her ANC today was only 980. I'm not sure how it could drop by almost half from what it was yesterday afternoon when all of her numbers were on an up-swing and she hadn't had any medications. Hopefully, there was an error counting or reporting her numbers at North Country yesterday and she didn't really drop. Her hemoglobin was down a little too, to a 9.4. However, those numbers were still good enough to allow her to go forward with her treatment schedule.

She hadn't had anything to eat since about 10pm the night before and we were scheduled for a 12pm lumbar puncture (LP), after which she could eat. Our appointment time got pushed back by delays beyond our control and she finally got the LP around 2pm. Needless to say, she was a very hungry little girl but she handled it well. Josh was with us today too, and Josh and I don't eat around Katie when she can't eat. He was more worried about his belly than she was about hers.

I got to bring home a new gadget today as well. We brought home a glucose meter (typically used by diabetics) with which we have to test Katie's blood sugar levels every morning before eating or drinking and every time she shows signs of having a low blood sugar. We are recording the data to try to get a better idea of how her body is handling sugar. This means we get to be the mean people and pick her finger every day for a while. No length of time was specified, but I was given a 50 day supply and a prescription for refills. I get the feeling that this is going to be with us for a while.

Well, she has had her bed time snack and is snuggled in for a well deserved rest right now. I think I'll follow her lead. Tomorrow will bring a new host of challenges.

We're Going In

We got the results of Katie's blood test back and her ANC is 1520. That means we're headed to Fletcher Allen first thing in the morning for a lumbar puncture and other forms of chemotherapy. Of course, the lumbar puncture means that Katie has to be asleep and that means it is a hungry day. Luckily, Katie is cooperating nicely with her new snack ritual tonight. She has to have just the right kind of snacks before bed to keep her blood sugar levels high enough to last through the night, and snacking is even more important on nights before she has to fast for 12 hours. She is eating a chicken burger, some crackers and cheese and drinking a glass of milk right now. That will easily hold her until morning, then we just need to get her to Fletcher Allen early enough that they can get an IV started to keep her blood sugar levels up while she is waiting for her lumbar puncture.

Therefore, I will not be posting anything to the blog in the morning since I will be on the road. But you can expect an update tomorrow evening after we get back home. Today went well. I expect tomorrow to go nearly as well considering what she will be doing.

Time For a Blood Test

Today is Wednesday and that means we have to go to North Country Hospital for a blood test before tomorrow's treatment. If her ANC is at 750 or above, she is going to get a lumbar puncture for chemo and more chemo through her IV. This does is supposed to be nasty, and the drugs being used are the same drugs that were used when she ended up in the hospital the first time. We aren't looking forward to this round.

If her ANC is still below 750, then the treatment will be put off for another week. I'm hoping they can put it off since she still hasn't fully recovered from the side-effects of the last treatment two weeks ago.

Her morning has gone reasonable well so far with only one trantrum. Her biggest complaint is that her feet hurt which is a real problem because she refuses to walk. I get nervous when she refuses to walk.

The Drama Continues

Katie cries all day and most of the night now. Her whole body hurts and she is too weak to get up. Today, she gets to go to North Country Hospital for blood tests. Tomorrow she gets to go back to Fletcher Allen for a check up and possible transfusion, but no chemo this week. In fact, we get to stop the steroids tomorrow too. I'm interested in her blood counts today. I'm wondering if she is low enough for a transfusion yet.

Day to Day

Katie is still doing reasonably well. She has a little more trouble with nausea each day and she is looking a little more pale, and is feeling a little bit weaker, but overall she is still pretty good. Tomorrow, she get to go to North Country Hospital for a quick blood test at the lab before her trip to Fletcher Allen on Friday. We expect to find out that she needs a red blood transfusion. It was getting near to low last week, so I would expect that by now she would have crossed the line into low and be needing some blood by Friday.

Last night she went to a T-ball game to watch her brother and his team play T-ball in the rain. Tonight, she is going with us to St. Paul's to watch her brother in this year's evening of the arts. And tomorrow night, she is scheduled to hang out with her Nana and Josh while Amy and I go to a retirement dinner being put on for one of the teachers at Lake Region. We keep her schedule pretty full whenever she is feeling good enough to get out and about.

A Productive, Fun Day

Katie and I ended up spending the day together after my parents called us at 5:30 this morning to say my dad wasn't feeling good, had a sore throat, and didn't want to expose Katie. So we started out with a bath and then headed out to do some errands. We went to the bank to make a deposit into Katie's Kids Club account. We went to the hospital to get a little blood drawn for cell counts. We went to the auto parts store for a new multi-meter. And we went out to lunch at Jennifer's in Derby. After that, I brought her home and she napped away the last couple hours of the afternoon while I did a little work cleaning out the winter stuff from the basement to make room for the summer stuff.

Tomorrow, Katie and I head out early for Burlington. We have a long procedure to look forward to and then another one on Friday so we will be spending the night with Art and Kathy. Katie's blood cell count results came in this afternoon and they are impressive. Her ANC is up over 900 now. She has officially recovered from the last round of chemotherapy. That's why we start again tomorrow. Here we go again...

Home Improvement

Boy am I glad that this little girl is out of the hospital. She is so much more alive when she is home. Katie is animated, motivated and hungry. She spent the day yesterday, smiling, laughing, playing and loving everyone around her. She also spent a good portion of the day eating. She ate everything in site - never much of any one thing, but no food was safe within her sight. This morning has started out much the same. She asked for cereal for breakfast, but in the picture included with this post, she is eating my English muffin and turkey sandwich. She slept through the night peacefully in her own bed and didn't wake up this morning until after her mother and brother had already left for school.

Being home for her is the magic medication that is doing more to improve her mental and physical health than any of the drugs at the hospital. She is more active, more satisfied, and more willing to do the things she needs to do to regain some of the physical capabilities that she lost during her latest round of illness.

We will be going to North Country Hospital this morning to get the blood drawn for her first cell counts since leaving the hospital so that we can hopefully have counts back before the end of the day. Otherwise, if we wait till this afternoon for counts, we won't get the results back until Monday.

Her physical therapist will meet us at home this afternoon and we can begin to work on getting her to walk confidently again. Her muscle control is very shaky right now, and while holding a cup or some food, her arms shake uncontrollably and make it difficult for her to feed herself. Her legs are just as unreliable, but cause more problems for her when they fail. She is afraid of falling down, so she tries not to walk much at all and if she has to walk, she walks the shortest distance possible. The only way to describe her walk is to compare it to a the gait of a person with mild cerebral palsy. This new inability to walk is a direct result of her chemotherapy. The Vincristine that she gets generally causes this side-effect after a while and we have been told that Katie resisted the side-effect for a longer time than normally expected. With Therapy and time, this side-effect will eventually reverse itself, but for now we have to deal with it.

Amy has her own opinions about how beneficial it is for Katie to be home and I am encouraging her to add those at some point today. But just to give you a heads up, Josh said last night that he has caught her crying happy tears several times already while watching Katie interact with Josh and I.

Wednesday Update

Amy and I both went to school again today and Katie stayed home with Grandma Kathy. She didn't make it easy for us to leave the house this morning. She wanted either her mother or myself to stay home and she cried as we left. Amy had an especially hard time leaving the house as Katie cried for her mother from the other room. However, after we left Katie and grandma both had a good day.

Katie continues to grow a little sicker and a little weaker each day as we get closer and closer to transfusion time. She complained of a headache earlier, which generally means her Hemoglobin is low, and she has developed a few new spots of petechia which indicates that she also has low platelet levels again.

Because of her symptoms, we decided to take her to the hospital for lab work one day early. After school today, we picked her up and headed right to the Hospital to have blood drawn. Katie was great! She talked to the lab tech about horses as the tech drew her blood. We were already scheduled for a trip to Fletcher Allen this Friday for another transfusion, but if the blood test show that her levels are as low as we think they are, Amy and Katie will be headed to Fletcher Allen tomorrow instead.

For now, we are just following the normal bed time routine of stories and a quick cuddle and then off to sleep. Oh, I almost forgot to mention it but I am doing my part of the routine in a hospital mask since I now definitely have a cold. I feel tired and rundown with a tight, painful cough to top it off. The cold is a really nice addition to the multitude of complications that we already deal with every day.

Oh My! What a Day.

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

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

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

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

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.

Roller Coaster #2

Katie and I were both tired today after our Dora binge. (There is something nocturnal about Katie these days, and I don't care for it!) We had a pleasant but low key day. I should have known something was wrong when Katie took a long afternoon nap. Rick returned from work to find her sleeping on the couch and decided to wake her. One night of Katie' sleepless shenanigans would be enough, we thought. Unfortunately, he discovered that Katie had a fever, so our day changed, again, in the blink of an eye. Rick's parents popped in for a visit just as Rick was confirming that Katie's temperature was actually rising, and they took Joshua to Nana's house for a sleepover. Rick and I took Katie to North Country Hospital for blood counts, blood cultures, Tylenol and some antibiotics.

The odd thing about this trip is that we made the same trip just six weeks ago, and we ended up in the same room (Emergency Room #2) that we occupied then. This is the second Tuesday night we have spent in the ER at North Country, and the same staff was on duty. Weird. This is algo good news, however, as these are truly wonderful people. They have been following Katie's adventures. I hope they will read this entry. I hope they know how grateful we are for their help. I hope other folks who have not ventured into the ER at North Country will take my word for it: We are so lucky to have such kind and capable people working for us. I think they may have been as happy as we were to learn that Katie's counts were good, that her fever was responding to the Tylenol and that we could go home. (Of course, Katie was pretty fussy, so...)

Actually, despite the drama, we weathered this little storm pretty well. We are better prepared to accept that there will be bumps in the road. Katie is surprisingly good at submitting to routine medical procedures even when they are unpleasant. (She received two shots in the muscles of her thighs...blahhhh.) Joshua was amazing. He didn't panic or whine. He packed some toys, I packed his clothes for school and a lunchbox, and off he went. What a kid!

As I write, Katie is asleep in her own bed. She has a fever, and we don't know the exact cause, but she is fine and very happy to be home. We'll know more tomorrow. We're still waiting for results from the Minimal Residual Disease test, too, and we have to start planning for a trip to Burlington in which doctors will access and use Katie's port for the first time. Big doings. We'll keep you posted. Good night.