Our Plans Changed in an Instant

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

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

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

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

Morning Update

Katie recieved her blood transfusion last night at about 9:30pm and is feeling better this morning. The nurses believe that her lungs sound a little better this morning and Katie is telling us that her ears feel a little better too. We are waiting for her blood counts to come back this morning to see if anything other than her red cells have climbed.

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.

Home Again Sort Of...

Katie and I are out of the hospital again and back at Grandpa Art's and Grandma Kathy's. Her ANC was up again today. It climbed to 160 which is encouraging. However, her other blood cell counts all dropped a little. Red blood, white blood, and platelets are all down just a little. If they continue to drop at the same rate, Katie will need a transfusion on Friday.

I tried to get the doctors to take Katie off of her IV and all antibiotics last night so that we could see how she handled the sudden change while we were still in the hospital. But I couldn't get everyone to agree with my way of thinking. They did unhook the IV, but they kept up two more doses of antibiotics. So, since this was going to be the first night without antibiotics again and we were going to be away from the hospital again, I asked them to leave Katie's port accessed so that if we have to come in in the middle of the night there will be far less trauma. The doctors agreed so we are at her grandparent's house and she is still accessed.

If all goes well tonight and she doesn't get another fever, we will go back in to Fletcher Allen tomorrow to have one more blood sample drawn through her port before she is deaccessed. Then with her port deaccessed, she will be from to go back home to Barton for a little while at least. If her blood counts stabilize, she won't even need to go back to Fletcher Allen for a transfusion on Friday.

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.

Late Morning Update

I'm sorry that this update is late today. I couldn't get Amy to answer her phone this morning. It turns out that she and Katie were out and about in the hospital, playing and exploring. They left before I called and I put off calling thinking that they might still be asleep. There is a rooftop garden visible outside Katie's room at the hospital and they decided to go and try to find the entrance to it. They found it, but the door was locked. We have seen people out there before, so it is allowed, we just have to find the time when it is unlocked.

In addition Katie has been out playing in the hall with a couple of other girls staying on Baird 5. Apparently there was some sort of race involving little pink ride-on cars and tricycles. She has been painting, creating bead bracelets and just walking around. She is feeling good this morning.
Her platelets are low, but the doctors aren't going to give her a transfusion right now unless she begins bleeding for some reason. They would prefer to see her own platelets regenerate and they expect that to happen within the next couple of days. That also means that if her platelets are coming back on their own, other blood cells should start to come back as well. Her ANC will climb and she will be able to come home. Still, it looks like that is at least a couple of days away and one of us will end up missing the first day of school. I have volunteered for that sacrifice.

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.

Feeling Better After Blood

As Katie got her transfusion today, the life came back into her. She had been lying in bed wanting to do nothing but watch tv. She didn't even want to sit up straight. After the blood had been flowing for about 20 minutes, she was standing on my lap, bouncing around making me work to keep her safe. Her foot seems to be feeling better. She didn't complain of any pain while she was standing and didn't seem to prefer one foot over the other. Her legs were a little weak though and they were shaking with the effort to play.

Her appetite was pretty good too. She ate breakfast and lunch well and treated dinner as an extended snack opportunity. I wish things all the food that is going in would start to come out the other end soon. She hasn't had a bowel movement since Sunday and things are getting a little desparate on that end.

Josh had another good day playing with his cousin. I think I'll take him over to visit his grandparents tomorrow and give my brother and sister-in-law a break from us for a while. Besides, Josh's grandparents have seen him for a total of about 15 minutes so far this week and we have been in Burlington since Monday night.

Back in The Hospital

Katie's fever came back yesterday afternoon and spiked at 101.5 last night. Given her previously low ANC, we were pretty sure that this would mean that Katie would be staying in the hospital at least over night. We had already had too many late nights so we tried to avoid the middle of the night transfer to Fletcher Allen from North Country by ambulance. Instead, we drove straight to Fletcher Allen where she was assessed by the emergency room staff and then admitted to Baird 5 again. Her temperature had come back down again by the time we got to the hospital, but her ANC was hovering around 130 and her platelets were low enough to require a transfusion.

I spent the night with Josh at my brother's house. We left the hospital just after Katie was moved into her room on Baird 5. When we left, she was comfortable and getting ready to go to sleep. Now, I'm heading back to the hospital and leaving Josh here with by brother's family.

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!

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.

A Sunday Morning Filled With Promising Signs

I'll get right to the good stuff and then get back to the more mundane stuff. Katie's white blood cell count is now up to 530 and her ANC is now up to 20 fom zero! That's the good news, and the rest is pretty much the same as it has been.

Katie slept well last night and she still has a cough, and now also has the sniffles and her left eye has begun to weep. She is still not eating, but she is drinking plenty of milk and water. She is still on her TPN and lipids. I may have forgotten to mention the lipids the other day, but the TPN provides all of the nutrients her body needs but it provides none of the fats. The lipids provide that little extra fat that she needs to continue being a healthy, growing girl.

The hemoglobin transfusion last night really helped to boost her energy and she has been moving about in her room ever since. She did still have a fever last night and she has one again this morning, but it's a low grade fever of 37.8 C. If it reaches 38 C, she will get some Tylenol.

Josh and I are headed out to his Nana's house for a pancake breakfast. Then will are going to try to get in a little bit of fishing before coming home. He even wants to try and talk his Nana into going fishing with us. We'll just have to see how that turns out.

Saturday - Mostly Good With a Mix of Blah

Katie had a reasonable good day today. Her platelets came up a little bit, her white blood cells and ANC are pretty much unchanged, and her hemoglobin is low enough to require a transfusion. She got the transfusion this afternoon, and has been feeling pretty good ever since. However, before that time, her temperature kept rising and falling for no apparent reason until finally reaching 38 Celsius and then she was given Tylenol to break the fever. She spent most of the day relaxing and napping in her mother's arms while Amy read her story after story. I don't know how she reads so many stories, but she keeps going long after my mouth and throat are parched to the point where I have to stop reading out loud.

The transfusion really seemed to perk Katie up a bit and when I spoke to them last at 8:30, Katie was gleefully telling stories in the background as Amy and I tried to have a conversation. I told her she should try to read enough stories to get Katie to sleep some time soon, and she was going to try but she didn't have much hope of accomplishing anything soon.

Josh, however, is already fast asleep. When we returned from Milton today, we stopped at the house only long enough to put on some warmer clothes and then we went straight to the barn and stayed there until bed time. We took our first horse-back ride of the year, giving Charlie a bit of exercise and relearning how to ride double-bareback. It was fun and relaxing. Later we flew a kite in the strong winds that were blowing on top of Burton hill. We also sat and visited with Robin, Josh's Nana, and her son Sean and his girl friend Andrea. It was a very nice way to spend the rest of the day. Josh didn't take a nap while he was there, so he was tired when he got home. It didn't take him long to fall asleep.

Tomorrow morning will start off again just the way Josh likes it - at the barn for a breakfast of pancakes with his Nana. After that, I have some work to do to get ready for school on Monday. Living at Fletcher Allen for days at a time really makes it difficult to stay on top of my online interactions with my students. I have no connection in the room and I can't take Katie to a room with a connection, so I prepare for a week at a time whenever I'm at home.

Saturday Morning Ups and Downs

As of this morning, Katie's hemoglobin was climbing again and was at the respectable level of 10.2. That is one of the "ups" for the day. Another up is that her fever broke last night at 10pm and she is feeling well enough this morning to be happily talking and eating this morning. She is requesting chicken soup as fast as she can get it.

The only down of the day so far is that her ANC has continued to drop and is now a perfect zero and her platelets are low enough to require a breakfast transfusion. Doctors have said that her ANC needs to be at least 500 before she can go home, so this is likely to extend her stay a little longer. On a positive note, the doctors told us this morning that we are likely through the hard part and now she should start the recovery process and we just have to wait.

Video Games, Laser Tag and a Transfusion

The whole family took the trip to Burlington today. We brought Katie to Fletcher Allen for her transfusion and Josh and I left Amy and Katie at the hospital while we headed off to entertain ourselves in the greater Burlington area.

Katie's numbers were impressively low today and they definitely explain why she was feeling bad yesterday. Her hemoglobin was a mere 5.1, low normal range would be 11.5+. Her white blood cells were only .46, low normal range would be 5.5+. Her platelets were only 18, low normal range would be 156+. Katie received a hemoglobin transfusion and a platelet transfusion this afternoon and is feeling much better now that she has a little more blood in her.

Josh and I spent some time in the Square Mall with Gabe, a long time friend. We picked up a couple of new video games from the used game bin at the Game Stop and Josh is very excited about those. We even spent a little time playing games in the store before meeting up with my brother and his son, Kyler, to go to Pizza Put. Theoretically, one goes to a pizza place for pizza, but we never ate any pizza today. We spent our time playing laser tag and miniature golf there. It was loads of fun for all of us as we blasted away at each other in a maze lit with black lights. A computer tracked our performance and gave us a title at the end of each battle. Kyler earned the rank of Space Cadet. Josh graduated from Space Cadet to Lunar Private. Ryan (my brother) earned the rank of deck officer and I out blasted them all with the highest rank of Imperial Major. I wish every trip to Burlington for a transfusion could be this much fun.

Hanging On

Katie is just hanging on and waiting for her next transfusion at this point. Her energy levels are really low and her whole Body is hypersensitive to touch right now. It hurts her just to pick her up. Her blood cell counts were really quite low when we left the hospital the other day. They were borderline at the time and the doctors decided to see if she could wait three more days before getting the next transfusion. Well she is wating, but I can't say that her quality of life is very good. She and I will both be glad to get some fresh blood into her on Monday.

A Typical Transfusion

For any of you wondering what a typical experience at Fletcher Allen is like, I video taped, edited and narrated Katie's last trip to the hospital for a transfusion. It is a ruffly three hour process, edited down to nine minutes and twenty three seconds.

We are due for another transfusion on Monday.

Home again, Home again

Katie, Josh and I all traveled to Burlington today for a little chemotherapy. Josh is on vacation for the rest of the week, so he was obliged and willing to travel along. Katie was not as willing but I didn't give her the option.

Chemo was reasonably quick today... just 2.5 hours in the hospital plus the trip down and back. It was actually a nice day for a trip and we rode down with the windows part way down, nibbling on snacks and enjoying the sun.

Katie was good for her doctors and nurses throughout the procedure and Josh was happily occupied with coloring and playing. When everything was said and done, we stopped in to visit Grandpa Art and Grandma Kathy for a quick bite, a drink and a hug. Then we were off and headed home. Katie slept, but Josh stayed awake and kept me company all the way home.

Despite the transfusion Tuesday, Katie's numbers are still low - especially the hemoglobin which is currently only 7.2. The doctors expect that she will need another transfusion by Monday. For right now though, we are all set for a good weekend. Hopefully the warm, sunny weather will hold out so we can get outside a little.