Success

Katie's port surgery was a smashing success. She was in and back out of the hospital before she even knew what was happening. The idea of the surgery, of losing the port that had been with her for so long, was scary for her. She was very brave about going in to have surgery, but every now and then, she showed us that she was actually quite afraid. She would get upset and tell us that surgery was scary and that she was afraid of having her port out. However, when the doctor put the grape smelling gas mask on her, she went right to sleep without any complaints. When she woke up after the surgery, she had another moment of fear and told us that she was afraid of having her port out. She was quite shocked when we told her it was over and that her port was gone.

Her recovery has gone very well. She has showed no signs of discomfort or infection. In fact, she had some regular Tylenol at the hospital on the day of surgery and hasn't had any since. We were sent home from a prescription for Tylenol with Codeine, but we didn't have to fill it.

Today, we are headed back down to Fletcher Allen for a follow-up appointment and her end of treatment party. The doctors and nurses in the children's specialty clinic are actually going to throw a small party for Katie today to celebrate the fact that her treatment is over.

The Last Infusion and a Farm Update

Katie had her last infusion of chemotherapy Friday. She is still taking chemotherapy drugs in pill form for another 16 days, but she will not have to go back to Fletcher Allen for any more chemo through her port. She is feeling good and her blood counts are up. With any luck, she will finish out these next 16 days strong.

Back on the farm, we added another calf, 36 more chickens and 3 turkeys. Katie's favorite farm critters right now are the chicks. She really loves them when they are young, cute, and fuzzy.

A Light at the End of the Tunnel

Katie is at Fletcher Allen today getting her last Lumbar Puncture with Methotrexate. At today's appointment her doctors finally gave us a firm end date. Baring any more unforeseen occurrences, Katie's last dose of chemotherapy will be on June 8th 2010.

47 Days To Go!!!

Chemo and Ear Infections

Overall, things are still going smoothly for Katie. She has only had to contend with minor incidents in the last few weeks. She had another ear infection a couple of weeks back that gave her enough of a fever to put in the emergency room at North Country Hospital for an afternoon. Her port access went smoothly and she was in at 1pm and out by 5pm. That's the kind of quick trip to the ER and back that we like.

This past Friday, she traveled to Fletcher Allen again for another round of chemotherapy. The last few monthly doses haven't had much of an effect on her other than to make her tired and a little ill - nothing that disrupted her activities. This dose of chemo had a more apparent effect. The Vincristine made her feel nauseous for the first time in a long time and she made several trips from her bed to the bathroom last night to get sick. I figured that she would be too tired to go to school today, but she woke up bright and early, ready for another day. She was more ready than Amy and I.

This past Saturday, we bought her her first pair of downhill skis, boots, and bindings. Now that there is snow on the ground she is eager to try them out. If the promised nor'easter hits tonight and we get a snow day tomorrow, we'll have to let her break her skis in in the back yard. Maybe she'll even let her parents sleep in late...

Birthday Surprise

Today is Katie's birthday, but the surprise is on all of us. Just before midnight last night, Katie began vomiting for no apparent reason. It continued through most of the night as Amy and I lost count of the number of trips that we made to the bathroom with her. I think the last trip was some time after 3am.

We slept as late as possible this morning, but a birthday breakfast at the local diner is, at the very least, postponed because when Katie did wake up, she woke up with an extremely low blood sugar and needed some food in her system ASAP. She is currently in the tub, washing away the smells of her late night activity and trying to perk up enough to enjoy her birthday. With any luck, her sudden nausea is a fluke and a momentary inconvenience instead of the beginning of something bigger.

She did receive her treatment, including an LP, last Thursday. At the time, the doctors noted that she had gained a pound and grown an inch which pushed her into the next steroid dosage category. They doubled the dose of steroids that she had to take for the next five days. We didn't see any noticeable gain in side effects except for her hunger, but who knows... Maybe this is related. She has, after all, been eating enough for a person twice her size for seven days now. Maybe her body just couldn't hold any more.

As we look forward to the rest of our day, our fingers are crossed.

Not So Bad

Katie has finished this round of steroids and this time around it wasn't so bad. Her appetite increased a little bit and she definately became more irritable and difficult to deal with, but she didn't take it to the extremes that she did the last time around. She is still feeling the effects however, and her last dose was two days ago.

I wonder what made her react to last month's treatment so much more strongly than this month...

Steroid Challenges

For the past several treatments, Katie has behaved as if she hadn't even gotten any chemotherapy or taken a course of steroids. This time, however, is different. She went to Fletcher Allen last Friday for her standard dose of Vincristine and Pentamadine via her port, and Methotrexate via a lumbar puncture. She then came home and started her 5 day course of Dexamethazone. Saturday she felt pretty good until later that night and then she had a horrible night. She felt sick, her body hurt, and she couldn't sleep. She woke up Sunday feeling remarkably well. Her energy level dropped off quickly and she spent most of her day just feeling a little tired. However, by Monday, she was complaining of various pains and becoming emotionally unpredictable. The littlest thing has been setting her off ever since. A boo boo of any severity is cause for screams and uncontrolled sobbing. Any sort of reprimand, even a slight one, is cause for either inconsolable sobbing because "Daddy scolded me." or a kicking and screaming tantrum.
Today was the last day of Dex, and most of the other drugs effects should be waring off by now. I can't wait for Katie to return to normal again.

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.

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.

Chemotherapy and a So-So Weekend

With Katie's numbers up, the chemotherapy resumed again starting Thursday. She had a dose of Vincristine (causes nausea) at the hospital, a dose of Zofran to combat the nausea, and a dose of her antibiotic, pentamidine. That night at home she got Methotrexate, Dexamethazone, and Mercaptopurine. All combined, a lot of chemicals went back into her body and that was just on Thursday. Friday, Saturday, and Sunday she continued to get Dexamethazone, Mercaptopurine, and Zofran. She has had a break from some of these drugs for quite some time now and she isn't used to handling them again. She spent most of her weekend just lying around on the couch or in bed. She didn't nap much, she just didn't feel good enough to get up and play. The few times that we tried to get her out, she told us she didn't feel good and just wanted to go back home. Tonight, after climbing into bed, she finally vomited for the first time since the drugs started going back in. Shortly afterward, she felt better.

Tomorrow, she goes back to daycare. Hopefully she will feel well enough to enjoy it because, even sick, she is still looking forward to seeing her friends.

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.

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.

Neutropenic and Exposed to The Flu

Katie took a scheduled trip to Fletcher Allen Thursday for a lumbar puncture and chemotherapy. The only thing that made the trip unusual was that I wasn't feeling well. In fact, I was feeling pretty sick but since I wouldn't be expected to do much but wait for the chemo and the LP, I figured I could handle it.

All went well with the chemo and the LP, but as we were leaving the hospital, one of the nurses caught us and told me that Katie's blood tests had just came back and her ANC was a mere 360. She was neutropenic. I was also running a fever by this point.

Today, I went to see my own doctor because I was still feeling pretty bad. It turns out that I probably have the first case of the flu to be reported in Vermont this year. So far, Katie shows no signs of coming down with the flu herself but we are watching carefully and waiting. If she starts to run a fever, we are headed to Fletcher Allen for an extended stay.

One of the last things the nurse told us before we went home was to pack some bags. We would likely be back. I am hoping to prove her wrong.

Another Monthly Visit Come and Gone

Katie had to go back to Fletcher Allen for her monthly checkup and dose of Vincristine Thursday. Things went pretty well. Her appointment wasn't until noon, so we had plenty of time to get there and no reason to rush. It wasn't a hungry day for her so we could stop and get some snacks on the way into Burlington which always makes her happy. She stayed happy even as we walked into the clinic. She even lead the way to the infusion bay, running in front of me, laughing and squealing, telling everyone who would listen that I was chasing her with the stroller. She ran right into the infusion bay and that's when her enthusiasm ran out. She suddenly didn't want to be there and didn't want anyone accessing her port. But everything went so smoothly that she was still complaining about not wanting anyone to touch her port when the medication was already in and her port was already deaccessed.  It was a nice, quick treatment. After that, we picked up Grandma Kathy and headed over to the Olive Garden for lunch. Trips that go as smoothly as this one just did go a long way toward making the next trip seem not quite so bad. Granted, the Vincristine did end up making her vomit later that night, but that was to be expected. She had a pretty decent day today and is sleeping peacefully right now.

A Short Update

Katie's treatments went fine yesterday and her blood tests showed numbers that were very positive. Her ANC is over 900 at this point and her health has improved to such a degree that she has been given the OK to go back to day care. Katie and I visited daycare today to get a feel for it and she didn't want to leave after just a half hour. She wants to go back Monday so I told her we would try a half day Monday.

Amy had a lot to say yesterday about Katie and her positive prognosis - so much so that I told her she should write the blog entry. However, she fell asleep before doing it so I thought I should at least put in a little filler to forestall questions and let people know that there was nothing to worry about. Hopefully, Amy will have a chance to update the blog with her thoughts from yesterday later this evening.

Hungry Day

Katie and Amy are off to Fletcher Allen this morning and Josh and I are at school. I'm in a study hall right now, updating the blog. Katie is getting her first chemotherapy treatment as part of maintenance today and it just so happens that it is a treatment requiring a lumbar puncture so she will be getting some anesthesia again. That means no food. However, she was great about it this morning. She woke up early enough that she could still drink so she sat around this morning sipping on a juice box contentedly. Hopefully today's treatment doesn't break the streak of really good days that she has been having.

Katie With Grandma

Last week we were trying to determine why Katie was so lethargic while we were at school and so perky when we were home and we took a guess that she was bored and sad because she had to stay home while we went off to work to have all the fun. So we asked her grandparents to try something new. We asked them to get her out of the house to see if it helped and it helped tremendously. My parents took her to their house during the day and Kathy took her out for lunch at the B&W snack bar. Katie loved all of it. She was 200% perkier and more energetic. She was happier and she was active enough to be working on getting healthy again. We really need to get her back into daycare where she can have her own place to go in the mornings and play all day long with other kids. That day can't come fast enough.

Tomorrow, Katie has to go back to Fletcher Allen for her first chemotherapy treatment in the maintenance phase. She is not going to be happy about going back considering that it won't be a quick one. The first treatment involves a lumbar puncture and sedation again, but at least after that, she won't need more hospital delivered drugs for a whole month. Amy is taking the day off to take her in tomorrow. Josh and I will be going to school as normal.

About Josh and school - His first homework assignment went very well and was done on time. His second one didn't go nearly as well. Amy and I both worked late after school yesterday and did not have time to help him with his homework there. Then we came home and picked Katie and Grandma Kathy up to take them to Newport for a blood test and dinner. By the time we got home from dinner,it was after their bed time and Josh had fallen asleep in the car. No homework done last night. We are going to try and get it done this morning.

Evening Update

Katie has had another bowel movement and she has had her transfusion and her chemotherapy. Plus she got out of her room to play again this afternoon in the play room and the hallway. She was standing and putting some weight on her injured foot too. Now, she is tired. So she is relaxing in bed, watching some cartoons on TV and nibbling some food.

I have to admit that I have not been at the hospital to see her today. Josh and I already had plans for the day. We went to see Circus Smirkus this afternoon at a performance in greensboro. He absolutely loved it. Ther performers were incredible, but the best part for me was just being out of the hospital again. Her little hospital room really wears on us after a while. Josh and I will be staying at home tonight and tomorrow we will head back to the hospital. I'm looking forward to sleeping in my own bed and Josh is yawning everytime I look at him.

Poop At Last!

Katie finally had some success in the poop department this morning, but not before suffering one final consequence of not going for so long. She tried to eat breakfast this morning and ended up vomiting because there just wasn't any more room left in her body for the new food. Now she feels better and we expect more results as the day goes on. This, of course, means that she gets to have her next dose of chemotherapy. So we can expect that today as well. In addition, she will be getting a red blood transfusion this morning and she could be due for a platelet transfusion tomorrow. The doctors don't believe that her numbers have hit rock bottom yet, but she should bottom out in the next day or two. School starts Tuesday. At this rate and if we are lucky, we will bring Katie home Monday night - just in time to get up and go to work Tuesday morning. This is not how I envisioned the last week of summer vacation. Amy and I have a long list of "just before school" projects that are not going to get done which is going to get everything off to a bumpy start.