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.

Emergency Room Update

The doctor just came in to tell us what Katie's blood count is. Its low. Her white blood count is just 1.1 and her absolute neutrophil count is only 770. Her numbers have suffered a precipitous drop over the last four days. Considering an ANC of 500 will put her back in the hospital for days, we are a little worried about this. Also, given the number of illnesses floating around our house lately, a dropping ANC does not inspire hope of a healthy near future.

I'm also going to write down her basic number here so that we don't forget them...
ANC 770
WBC 1.1
HemoGlobin 8.1

The Struggle Continues

At this point, the ealiest that Katie will get released from the hospital will be Thursday or Friday. It may be longer if her body fails to respond quick enough.

Her blood counts continue to drop and as a result her heart rate is rising and her breathing is getting rapid and more shallow. She is scheduled for a red blood transfusion tonight in an effort to remedy that situation.

Her pneumonia is still bad and her ear infections are still really bad, but drugs are flowing freely from several IV pumps attached to her port and hopefully things will start to turn around soon. Despite everything, Katie has remained in good spirtits for most of this latest hospitalization.

Josh and I came home tonight to get a few things done around the house. I have plumbing issues waiting for me in the morning, web site work that needs to be done and we are expecting a delivery of live baby chickens in the next day or so. We will be home for a couple of days before going back to Burlington and relieving Amy.

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.

No More Mouth Sores

The mouth sores are nearly gone. The last remaining sore is the one that we found first. It is on the inside of her left cheek and it was the biggest of the sores. It is now a tiny spot in her mouth and fading. However, all is not yet as it should be.

She has been displaying very low levels of energy for the last week and complaining that she doesn't feel good. We suspect that she is having a hard time managing her sugar levels, but have not proved it yet. The doctors told us no to go through the trouble of a finger pick, but to just treat for low sugar. It hasn't been working as well as it should so I am going to test her blood the next time she is feeling low. I want to know how low she is getting and whether or not we are bringing her sugar levels back up high enough for her to feel good for a sustained period of time.

To jump topics a little, Katie is officially enrolled in preschool for next year as of today. Starting this coming August our tiny little girl will be riding the bus with her big brother to meet us at the high school at the end of every day. Josh started out the same way, but he seemed so much bigger...

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.

A Smoother End to the Week

Despite the bumpy start to the week, things seemed to have smoothed out nicely. Beginning Wednesday night, Katie starting feeling better and became more willing to interact with others in a pleasant and playful way. Thursday, I (Rick) took her to Fletcher Allen for a follow-up appointment that was nothing more than a blood count. I haven't gotten the numbers yet, but I am expecting that to be good news. When the news is bad, they call right away.

Katie had a great day in Burlington yesterday. She napped all the way there, and by the time we got into the hospital she was full of energy. Normally, she wants to ride in the stroller from the car up to Pediatric Oncology on the fourth floor of Fletcher Allen. Thursday, she walked in like she owned the place. She sang her ABCs in the waiting room and belted them out again as the nurse was taking her blood pressure. She then led the way to the room where her port would be accessed for the blood draw.

We had to wait for a bit before the doctor was available so Katie was allowed to leave the room to visit another 3 year old patient down the hallway. On the way, she decided to show the doctors and nurses what she could do, so she lined up on her own imaginary starting line, counted to 10, yelled "Go!" and took off running down the hall. She proceeded to repeat this process over and over again, running the full length of the hall each time and telling the doctors to cheer and clap for her as she ran by. I lost count of the number of laps that she did, but she ran for more than 10 minutes. Any doctor or nurse who heard this going on and wasn't in the middle of working with a patient, came out to see her run.

From there, I took her to visit her cousins. Because of the nuetropenia, she hasn't seen her cousins since before Christmas. In fact, we still have Christmas presents for them sitting in a closet waiting for both families to get together before opening them.

Hopefully, that good feeling transfered over to day care and she is having a good day there today.

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.

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.

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.

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.

A Multi-Day Update

It has been a few days since we posted anything to the blog and we are starting to field questions because of it. Therefore, it must be time to post an update.

Katie is doing great! As always, when things are going well, the blog takes a back seat, but rest assured, things are going very well. Day care continues to help Katie get back to being a normal 3 year old kid. Every day, I can see her changing a little more and gaining back some of what she lost over the past 7 months.

Josh is acclimating to life in first grade. Behavior expectations are a little more strict than they were in kindergarten and he has gotten in trouble a couple of times this week for being unable to control his urge to talk to anyone and everyone around him. It's going to be a sharp learning curve.

Amy and I are still feeling pretty well overwhelmed and are just trying to stay on top of things. It has been extremely difficult to jump back in and start school up again this year, but we are managing. I keep waiting for things to get a little easier, and they have in the last week or so. But I sure could use a bit more of a break.

Katie went to North Country Hospital again this evening for a finger pick blood test to determine how well she is handling the new doses of medications. We won't get the results for a day or two, but there was good and bad news that came out of the finger pick process itself. She had to have two fingers picked because the first one clotted up and couldn't be used. Her blood hasn't clotted that quickly since she first got sick. That was the good news. The bad news of course was that she then had to be stuck again to get more blood. I don't think she considered any part of it to be good news.

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.

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)

Late Night Update

Katie has had her transfusion. We also got her blood counts back and found a very disappointing ANC of 20. She is feeling fine. In fact, she stayed up late waiting for a transfusion to finish that didn't get started until 8pm. She seems fine except for the fact that she didn't eat a single bite of dinner and I put all sorts of food in front of her. Hopefully she makes up for it at breakfast.

Amy and Josh are staying with Amy's parents tonight so Katie and I have the comfortable and spacious hospital room all to ourselves. She has just fallen asleep and I am going back to join her.

One More Transfusion

Katie is feeling better today and her cough is getting better but her red blood cell count is low enough again for another transfusion. Amy didn't have her other numbers yet when we spoke.

Josh and I have taken care of some neglected saturday morning chores and we are now packed up and ready to head back to Burlington ourselves. If Katie stays in the hospital through the weekend, Amy will be coming back home with Josh for work and school on Monday. Today though, she is going to take him school shopping while I stay at the hospital with Katie.