Sunday, August 31, 2008

A Good Morning

Katie is starting her day off with a little left over chineese food and a glass of juice. She seems to be enjoying it too. She had a great day all day yesterday and a peaceful night's sleep, snuggled in beside her brother in my bed. The two entirely took over the bed last night and Amy and I ended up sleeping in their beds.

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Friday, August 29, 2008

Changing of the Guard

My parents helped us out today after Amy's mother headed back to her own home last night. Being able to count on two sets of parents to help us out really makes a difference. We can both go to work knowing that Katie is happy and safe at home by people who know her and love her as much as we do. It makes that one aspect of our lives a little less stressful.

Katie did well today while hanging out with my parents. She managed to squeeze in two naps and a walk around town in her stroller. She also got over her latest bought of constipation several times over again. The struggle for regularity has not yet been won, but at least it is the only struggle that we are engaged in at the moment.

Thursday, August 28, 2008

Some Pictures

I have been remiss in uploading photos. So here are a few that are from the past three weeks.

Here Katie and Josh lie in a hospital bed at Mass General waiting for blood test results to come back.

The tests took too long to come back for them to stay awake. It was about 12:30 am when this shot was taken and they had just fallen asleep.

Here, Katie and I can be seen riding the subway to Fenway Park just hours before she ended up in Mass General with a fever.

This photo was taken last week at Fletcher Allen as she was playing peek-a-boo in her bed sheets.

Too Little Of This

What did you do with your evening? I finally did something that I have put off far too many times out of necessity. I listened to the requests of my son and put aside everything else for the night to help him add on to his tree house. We had fun climbing around in the old maple tree in our back yard, lashing pieces of recycled lumber and wooden pallets together in the tree to strengthen a top floor and put some safety features in place around the platform hanging ten plus feet above the ground. We keep a supply of lumber around, recycled from other projects, to add to his tree house when we have time. The tree house hasn't grown much this summer, but his smile sure grew bigger every time we added another board.

As for Katie, she watched for a bit. She even spent some time up in the tree house with us, but the mosquitoes chased her inside pretty quickly. She had a pretty good night - eating, playing, watching movies while climbing all over the couch, and just plain using her little body and enjoying herself. She seemed happy.

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 Amy and I will be sure to check it out.

Wednesday, August 27, 2008

Home With Grandma

Katie is home today and she is staying with her Grandma Kathy while Amy and I both go to work. We were able to leave her this morning without any fuss at all. She was getting ready to eat breakfast and happily waved goodbye as we walked out the door. She is feeling pretty well after spending a night in her own house. Of course, she didn't sleep in her own bed... She snuggled in beside her mother and took over bed space to such a degree that I eventually gave up and snuggled in beside Josh instead. We need a bigger bed.

Tuesday, August 26, 2008

Doing Well At Home

Katie had a laid back afternoon here at home. She ate well, played some, went for a walk around town in her stroller and just enjoyed some familiar surroundings. Right now she is talking animatedly with Amy while Amy tries to read enough stories to put her to sleep. I don't see that happening any time soon. I'll bet Amy falls asleep first.

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)

Monday, August 25, 2008

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.

Sunday, August 24, 2008

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.

Saturday, August 23, 2008

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.

Friday, August 22, 2008

She Has Croup

Well, it is now believed that Katie has croup. Croup is generally caused by a virus with a gestation period of 5 to 7 days. Therefore, it isn't likely that she picked it up while in Boston or on her short trip out to her grandparent's house. It is something she developed while staying at Fletcher Allen. As her body tries to fight it off, some negative consequences are beginning to be observed. Her hemoglobin count has dropped down to just 7.5. Her platelets have dropped down into the 50's, and her white blood cell count has also dropped. Oddly enough, her ANC appears to be rising slightly despite the dropping white blood count. Her ANC is currently 70. Apparently it is normal for some cell counts to drop as the body attempts to fight off a virus. Croup is also capable of causing fevers and other complications which could keep Katie in the hospital until this has sorted itself out. Amy and I are starting to talk about and plan for which one of us is going to miss the first couple of days of school with the students.

A Rough Start To The Day

I don't know much at this point, but Amy was able to tell me that Katie is having a rough morning. She has been crying a lot and very uncooperative. I wondered if she was struggling with low blood sugar this morning, but Amy said that her IV lines are still in and glucose is running through them. So sugar should not be the problem. The nebulizer or inhaler have still not been tried for some reason and the medication for acid reflux has still not been given. Maybe Katie is just cranky because these issues haven't been taken care of yet or maybe there is some other problem. We just don't know at this time.

Thursday, August 21, 2008

The Little Things

Katie was back to having a fairly normal day in the hospital again today. Her ANC is still about 30. Her hemoglobin dropped a little lower down to about 9.8. Her platelets dropped a little lower too, but neutrophils and monocytes are still slowly increasing in number. She feels fine except for a nasty cough that she has now. The cough resulted from the unwelcome return to the hospital Tuesday night and all of the screaming that went with it. She had such a coughing fit at one point this morning that she vomited. Unfortunately for Katie, she was not in her room at the time and therefore she was wearing a mask over her mouth and nose at the time. It seems like a rather unpleasant experience. The doctor thinks she has reactive airways and plans on treating her with a nebulizer or an inhaler. They took chest x-rays to be sure and the initial results don't show anything wrong with her lungs. She is also dealing with a little acid reflux but that should be easy to treat with one of the medications that she has already had in the past. At home she doesn't like the taste of it, but in the hospital it can be run through the IV.

I just called for a further update, but I got shooed off the phone because they were busy playing in the play room. So, I guess they are having a good time and Katie is feeling pretty well this afternoon.

Wednesday, August 20, 2008

Birthday Update

It's late, but Josh and I are now leaving the hospital and headed home. Amy will stay with Katie in the hospital tonight and tomorrow night so that I can get in to school at least a couple of days this week.

Katie celebrated her birthday in the hospital today, and the hospital staff certainly did their best to make sure that she felt especially appreciated today. She was showered with happy birthday wishes and gifts and kindness. The child life specialist went so far as to allow me to shop virtually with a personal shopping assistant. I was given an computer with Internet access to browse online stores for what I still wanted to get Katie for her birthday but didn't have a chance to get while stuck in the hospital. I made up a shopping list from what I found and one of the volunteers took my shopping list and went shopping for some of Katie's birthday presents. Everything I asked for was purchased and it was returned to the room while Katie and I were taking an afternoon nap to recover from the late night last night. I woke up to find a bag full of the presents I had requested, a roll of wrapping paper, some scissors and some tape. By the time Katie woke up she had some presents around her to help set the atmosphere and keep her believing that it really was her birthday and we were doing our best to make it a special day. I didn't let her open a present until her mother, brother and grandparents arrived around 6pm for dinner. Her excitement built all day and she had a great little birthday party in her hospital room. She ate herself full of Chinese food and cupcakes and then toured the hospital in a wagon, giving out party favors; Slinkys and play dough to the kids and cupcakes to the adults. As Josh and I left Amy and Katie were settling down to play some video games.

As for her health today... she felt fine. Her fever was gone by the time the antibiotics were flowing last night and it did not return at all today. I can't explain it and no doctor has been able to explain it yet, but our last few emergency room visits have been very similar. Her ANC drops low, she goes to bed for the night and after a few hours in bed her temperature climbs. We wake her up and make arrangements with the hospital and by the time we get her admitted, the fever has come back down. It is one of the most frustrating feelings in the world to know that I just dragged my daughter out of her bed, and into a hospital where she absolutely does not want to be so she can kick and scream as she is examined and her port is accessed only to have her fever disappear like it was never there in the first place. I just wanted to turn around and bring her back home last night, but there was no way anyone was going to allow that. A fever can be deadly and every fever must be treated like it will be. I am so glad that we are almost to maintenance.

On a side note, my heart goes out to my two uncles who are now battling their own cancers. It is a long hard, scary struggle.

Josh and I are now going to get on the road. I still have to drop him off at my parents house in Newport before going home myself. He should be tucked into bed by midnight and I will get home somewhere around 12:30.

Uh Oh... Back Again

It is 2:30 am. This is going to be quick. Katie got another fever tonight at Grandma's house and we are back in the hospital. sigh...

To say it was hard to come back here doesn't come close to explaining how difficult it was.

Tuesday, August 19, 2008

Out Of The Hospital

Katie and I are out of the hospital, but not home. We are staying with Art and Kathy because the doctors didn't want us to be too far away. We have never been out of the hospital with numbers as low as they are right now. Her ANC is still hovering between 10 and 20. Her hemoglobin and her platelets dropped again this morning and she got a platelet transfusion before we left the hopsital. But, the general consensus was that nothing was wrong with Katie and everyone was just waiting for her body to start to rebuild itself. Since she wasn't sick she might as well coninue the process in a more comfortable atmosphere. So she left the hospital wearing a mask and went straight to Grandma's house. This way we are just 3 miles away from the hospital and we can get back there in an instant if anything changes.

Right now, she is snuggled deeply into the blankets in her bed here at her grandparents' house. She is very happy to be in a place that feels like home and she is going to sleep great tonight without the regular checkups by the nursing staff all night long.

Tomorrow is her birthday. We are very lucky to that we aren't going to have to celebrate it in the hospital.

Monday, August 18, 2008

An Update From The Hospital

I'm doing a quick update from the Ronald McDonald room in the hospital with Katie on my lap because I just checked to see if Amy had updated the blog and found she had not.

Amy went home last night to get ready for the first day of school. Katie and I are still at Fletcher Allen and we are going to continue to be here for at least a couple more days. Her hemoglobin is up a few points to 10.4 but her platelets have dropped down to 15 and her ANC is 20. One positive sign is that her neutrophils are up from 0% to 6% and that typically means that cell counts are about to start climbing.

Katie spent most of the day today feeling kind of blah. I think she was a little sick to her stomach. She never vomited, but after several hours of blah I asked for her to get some Zofran and five minutes later she was ready to eat and ready to play. It made a big difference.

Because Katie isn't running any fevers and has no sign of illness, the doctors might let us out of the hospital sooner than expected, but they also said that at such low levels, they can't let Katie get as far away as home. They might be willing to let us stay with Grandma Kathy and Grandpa Art for a few days instead. We would still be stuck in Burlington, but at least we wouldn't be in the hospital anymore. Anyway, that was one option mentioned this morning, but it hasn't been mentioned since so I'll just wait and see if it really happens.

Sunday, August 17, 2008

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.

Saturday, August 16, 2008

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.

Friday, August 15, 2008

Quick Update

Not much new to report tonight. Katie was feeling pretty good today and she got out of her room to play several times. She rode on wheeled toys. She climbed on things. She through balls everywhere. She played, she smiled and she laughed. But, she didn't poop and that is what we are all waiting for now. It has been since Sunday.

Her next dose of chemotherapy includes a drug that causes constipation so the doctors are still holding off on it, trying not to compound the problem, but it has to be given within the next 24-48 hours. Hopefully her body starts working correctly again before we have to introduce more problems.

Her blood cell counts still seem to be dropping. Her ANC slowed down and she only dropped from 30 to 10 today, but her red blood count is back down to just 7.2 and her platelets are also down. Amy found new petechia on Katie tonight. Nobody has even mentioned a date for returning home. We will just have to wait and see what tomorrow brings.

Still Waiting...

Joshua and I have returned to Fletcher Allen; thanks to Grandma, our tummies are full and we are well rested. We dug a dinosaur out of clay and ran to Barnes and Noble for Magic Tree House stories. We are in good shape, and I am ready to trade with Rick, who has been hanging out with Katie.

Katie is doing well. Her ANC continues to drop (grrr...), but she did get out to the play room for some fun. She was happy to see Dr. Homans this morning. Con artist that she is, she came away from their meeting with a LiveStrong bracelet and a Fletcher Allen flashlight. Dr. Bradeen will be very happy that Katie has her own flashlight now; these little mini lights are typically linked to the doctors' identification badges, which circle their necks, so Katie's ongoing interest in checking for sores in her own mouth has meant some serious bending on Dr. Bradeen's part. This should make it easier for everybody! Katie continues to take an active interest in all the medical tasks her doctors and nurses perform. She knows how to run the gadget that measures her blood pressure, for instance, and she likes the oxygen sensor. We'll have to see what this means many years from now as she prepares for college!

We're still waiting on a poop, but her belly is very noisy, so the doctors have elected to continue with Katie's treatment today. She will have chemo this afternoon, just one day late, and this will allow us to remain on schedule for next week. We are so close...We are eager to come home, but we know that this is in service of our long term objective: We will move to Maintenance next week! This, at least, is good news.

Thursday, August 14, 2008

Good morning

Katie continues to feel well. She has had a lot of fun this morning. We continue to enjoy surprises from kind and thoughtful people. One of her nurses, who knows that Katie likes waffles, brought her a Belgian waffle from the third floor cafe before heading home to her own family. That was a great treat. Katie also had a surprise visit from our much beloved pediatrician, Dr. Bannach. She was in town and stopped in to check on us. Katie was very happy to see her and loves the bright necklace Dr. Bannach brought as a gift. I painted her toenails this morning--she has some red toes and some pink toes!--and she has been coloring nonstop. She received a backpack full of school supplies from the Clinic's social worker last week, and it is her current favorite item; she has been cranking out pictures, and we spend a lot of time washing marker off her arms and legs. Joshua and Rick arrived just a few minutes ago with a box of doughnuts, so she is celebrating in grand style. She is fine. Really.

We are in a holding pattern now. Katie's fever has gone, but she cannot have today's scheduled treatment until she blesses us with a poop. We cannot go home until her immune system has repaired itself. So we are waiting. We don't have to be back at work until next week, though, so we can all be here together, and that makes this hospital stay much easier on all of us. It has also been good to spend time with my parents and with Ryan and Heather. So while we are eager to return to the Kingdom, we are doing what we can to enjoy this time and to keep each other grounded and happy. We'll let you know when we hear anything. Take care.

Wednesday, August 13, 2008

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.

Blood, Glorious Blood

Good morning, everybody. Some surprising news: Katie's red cell count was very low this morning (it was pretty good yesterday--we thought we were out of the woods), so the nurses ran Katie's tests a second time and confirmed that she needs some red blood cells. We've given her Tylenol (always a part of the process); we are simply awaiting the arrival of her brand new blood. (The power of the blood donor...) Katie caught up on sleep last night--always a plus--but she feels pretty crummy, so we are looking forward to the boost she gets from blood. She is eating well and appears relatively healthy when she isn't miserable, so we're still hoping that her recent fevers are the result of her medications (Ara C and cytarabine are both possible culprits) and that we can rule out infection. Unfortunately, her ANC has dropped to 30, and we won't be allowed to go home until that figure improves.

The doctors have already scheduled tomorrow's treatment as an inpatient procedure; it's good, at least, that we can continue with treatment and get that done. Katie is two weeks from the end of Delayed Intensification--we are almost there. She will celebrate her birthday next Wednesday. She gets the best present of all this year: For her third birthday, Katie gets the one last treatment of the Delayed Intensification cycle and a pass to Maintenance. While Maintenance is two years long (2 years!), she will have most of her meds at home and should be able to resume normal activities. She has just this one last hurdle.

For the record, we remain grateful for all that Katie's doctors have done to care for her body and to nurture her spirit. They are so good. We are very fortunate to have had so much help. Thanks to Heather and Ryan for caring for Joshua. Thanks to my mom and dad for a badly needed respite yesterday afternoon. We're getting there. Many thanks to all of you for carrying us across the threshold.

Tuesday, August 12, 2008

Business as Usual

We are now in a holding pattern. Katie felt fine this morning and then as the day wore on her temperature, breathing rate and heart rate all rose while her blood pressure dropped. By 4pm this afternoon she reached 101.5 and felt pretty bad. The nurse gave her some Tylenol at that point. That brought everything back under control and she is now feeling fine again. She is talking, sitting up and eating.

I am back at my brother's house tonight and Josh and Kyler are getting ready to spend the night in a tent setup on the floor. They are both extremely excited. Of course we also wound them up a little by going to Pizza Put for dinner and playing a couple of rounds of Laser Tag. Now I have to sit down and get some college work done. This also happens to be the last week of a course that I am taking and I have some work due Wednesday night and again Sunday 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.

Monday, August 11, 2008

A Little Sick and Then OK

Last night didn't go as smoothly as possible, but it could have been much worse. Katie ended up vomiting in bed at around 10pm last night, but that was the only time she got sick. She slept through the rest of the night very well. This morning, she is feeling ok but tired. Spending a late night in the hospital really tired her out. We will spend the day relaxing and recovering and I will try to get some work done on a web site at the same time.

Sunday, August 10, 2008

The Trip Ended Unexpectedly

We came home early from Boston after spending far too much of last night in another hospital. Katie spiked a fever just after dinner and we ended up in the emergency room of Massachusetts General Hospital until almost 2 o'clock this morning. However, before that all started we had a lot of fun.

We got on the road early in the morning and headed for Boston. The trip was uneventful and relatively quick. We dropped our car off at the hotel and quickly jumped onto the nearest subway without bothering to check in. We were running late. Josh and Katie love trains and subways and they had a great time riding the subway and switching trains at the stations. A short walk from our last subway stop put us right at Fenway Park where the kids desperately wanted to sample the ball park food. We settled into our seats fully prepared with four hotdogs, a couple of drinks to share between us, and a pretzel that Josh decided that he needed with his hotdog. We were there for a double header, but the first game lasted twelve innings and that was about all that the kids could take, so we headed out after the first game. We walked around a little bit and then headed for the subway again. It was after four and we were starting to feel the need for something to eat other than a hotdog. We had previously decided on sea food, so we headed back toward the hotel where we knew we would find a Legal Seafood nearby. Katie was just about asleep by the time we arrived, but she hadn't eaten in a few hours and we didn't want her blood sugar to drop if she fell asleep so we went right into the restaurant and ordered our food. She fell asleep before it arrived... She did manage to wake up part-way through dinner and have a little something to eat. It was enough to make us happy, so we decided to head back to the hotel for an after dinner siesta and then go back out on the town later in the evening.

It didn't quite happen that way. When we got back to the hotel and I picked Katie up out of her stroller, I noticed that she was warmer than usual. And of course, we forgot to bring along our thermometer. Amy headed went to the closest store to get one, the closest store required a subway ride, and when she returned we discovered that Katie's temperature was 101.9. 101 is the trigger for an immediate trip to the emergency room. We were pretty distraught to discover that she had a fever, but there wasn't much we could do about it other than call Fletcher Allen and speak to her doctors. So that is what we did. We made arrangements with Katie's doctor to call Mass General ahead of us and fill them in on Katie's history and then we loaded her back onto the subway and headed to the hospital. By this time, it was 8pm, bedtime. She never gets a fever in the morning when sleep deprivation wouldn't be an issue. It's always at night. Anyway, a fever with a high enough ANC wouldn't be a big problem, but we knew her ANC would be dropping and we weren't sure how much wiggle room we had. As it turns out, we didn't have much wiggle room at all. Her ANC last night was just 504. Anything less than 500 and we would still be there. Just this past Thursday her ANC had been 1270. We thought she was in better shape than she actually was and we put her in a precarious position because of it. Below 500, she isn't allowed to be around a lot of people or in strange places and we had her on a standing room only subway full of people headed to Fenway Park!

The tests at the hospital took a while, and then antibiotics were delivered through her port just in case and then we were finally allowed to leave. We finally got back to our hotel around 2am this morning and we all just collapsed into bed. When we got up this morning, we scrapped the rest of our plans, loaded everything back into the car and came home. I am disappointed that we didn't get to take the kids to the aquarium and the children’s' museum and the duck boat tours that we were planning on today, but at least they both got to go to Fenway Park for the first time and see a baseball game and have a whole slew of other experiences that they don't usually get to have. We all had fun doing the thing we got to do and now Amy and I are both relieved to be home where we know Katie is a little safer and her team of doctors is a little closer.
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Saturday, August 9, 2008

We're Out of Here

Everything is fine this morning. Our plans are still intact. We're leaving now. Bye.

Friday, August 8, 2008

To Boston!

So it's a little last minute, but we decided to take Katie and Josh to Boston tomorrow for a baseball game at Fenway Park. Some friends of ours gave us four tickets that they won as part of a promotional give-away and we are taking them up on their offer. We are headed out in the morning with plans to be in Boston just before game time. Then, we also booked a hotel for the night so that we can take the kids to some of the other attractions on Sunday. Josh is pushing hard for the aquarium that he remembers from last time. Katie doesn't seem to remember her last trip so she isn't asking for anything specific but she is excited.

For news a little closer to home, the flooring is coming along. It was slow for a while as Larry carefully worked the floor under molding and through doorways, being careful not to crack our old plaster walls. But now one full room and the hallway are done and we have one, square, doorless room left to go and already started. He should finish it tomorrow while we are in Boston. Some areas of this floor have been extremely challenging and I'm glad that Larry was willing to do it. I never would have gotten as much done as he has.

Katie, had a very good day again today. Her numbers are way up so she can have all the visitors that she wants and she can play her heart out. That is just what she did today. Colleen brought her children, Travis and Abby, down to play today and they spent the day playing with every toy in the house. I'm pretty sure that all four kids are worn out. Josh counts as one of the four because this was his last day of 4H camp and they let the kids out at 2 o'clock instead of 4 o'clock. So he was able to spend most of the afternoon playing with Katie, Travis and Abby too.

Great Day Yesterday & Good Again This Morning

According to Amy, Katie had an absolutely spectacular day yesterday. Fletcher Allen was nearly empty because this week is the week that Camp Takumta is open. Camp Takumta is a summer camp for children with, or who have had cancer and many of the children are at camp this week. So Katie got the benefit of everybody's full attention at Fletcher Allen yesterday. Amy said she saw two of Katie's doctors multiple times in a very relaxed fashion, while the child-life specialists there spoiled Katie rotten. After spending many hours at Fletcher Allen, Katie came home yesterday very happy about having gone there.

When she got up this morning, we were able to share more good news with her that came out of yesterday's visit. The enocrinologist was satisfied with Katie's morning blood sugar levels and told us that as long as we feed her first thing in the morning, we won't need to pick her finger every morning when she gets up. So Katie got to start her day today without a finger pick.

One final piece of information that came out of yesterday's trip was news about the pain in Katie's foot. She does have a stress fracture in one of the bones of her foot. It is not bad enough to need a cast or any sort of boot, but she should stay off it. I know that kids on the medications that she is on sometimes get thin, fragile bones but I am surprised at just how fragile they are. The broken bone in her foot is an unfortunate set back that is going to keep her less active than she should be, which is very disappointing.

Thursday, August 7, 2008

Morning Sugar Levels

There isn't much news to report this morning other than Katie's blood sugar levels and her general health before heading to Fletcher Allen. Her blood sugar level was 85 this morning, which is the highest reading she has had since we started measuring her levels last week. That could be due to the fact that she had a big past snack at 9 o'clock last night or it could be due to the fact that I just opened a new bottle of test strips and this was the first test with the new strips. Time will tell.

Katie was feeling fine this morning, and after coming to terms with the fact that she couldn't eat breakfast, she headed off to Fletcher Allen in good spirits. I stayed home to work on the floor with Larry. Already the floor is a lot further along than where I left it last night. It took him about 5 minutes to solve the problem that stumped me last night.

Wednesday, August 6, 2008

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.

Tuesday, August 5, 2008

Good Day

Josh had fun at 4H yesterday, and Katie continued to have a good day. This morning, Katie woke up with a blood sugar level of 70 and was feeling fine. She has felt great ever since.

She is all done taking most of her drugs for this week. She just has one pill at bed time. That will change again Thursday but for now its nice.

Monday, August 4, 2008

Doing Fine

Things are normal around the house this morning. Katie's blood sugar level this morning was 75 and she was pretty much feeling like her self. Josh is off on his first day at 4H camp and is quite excited about it. It is only a day camp, so he'll be home for dinner to tell us all about it. He'll do that for the entire week. I hope he stays at least a little dry in all of this rain.

I haven't written about Katie's foot in a few days, but that hasn't improved yet. She still says that it hurts and she still refuses to walk on it. But she will crawl around so she is moving around the house playing.

Sunday, August 3, 2008

The Morning After

Josh's birthday party was a great success yesterday and Katie was able to enjoy it all. She felt fine all day.

She woke up this morning with a blood sugar level of 71 and she was feeling shaky and very irritable. After a little juice, she was fine. Since then she has been eating left over Chinese food, clam chowder and other non-standard breakfast foods. The rest of the day should be a pretty low key day since we are all tired after yesterday's festivities.

Saturday, August 2, 2008

Sick In The Night & Josh's Birthday

Well, the nausea kicked in and Katie got sick last night. She started vomiting at around 1:30am and continued to do so with little naps in between until 3am. After which, her belly was completely empty and she fell asleep. I was worried about what her blood sugar levels were going to be like this morning, but the results surprised me. Her blood sugar level was 76.

She is in a great mood this morning and is feeling fine so far. Hopefully, she stay's fine the rest of the day and gets to enjoy her brother's birthday party.

Josh turned six today. He is very exited and happy to be "all grown up" and big now. We let him open a couple of present first thing this morning to help him get through the day until his party starts at 4pm. He is managing to contain himself, but only barely. I asked him this morning if he had heard the rest of us taking care of Katie in the night and he hadn't. He had managed to sleep right through lots of noise and a great many lights. Lucky him.

Now I'm off to finish getting things ready for the birthday part. Amy has already been working feverishly this morning on last minute details and my only responsibilities so far have been cooking breakfast and entertaining the kids. Time for a little more.

Friday, August 1, 2008

Good Morning

Good morning everyone. Katie is up and doing fine this morning. No nausea despite the new drugs in her system, and no complaints. Her blood sugar measured 66 when she woke up and since that time she has been eating this and that in a mini browsing session rather than a sit down breakfast. She specifically requested the deviled eggs that are visible in the background of the picture posted as part of today's blog entry.

Her doctor called this morning too and gave me an update on her foot x-rays from yesterday. Everything appears to be normal except she thinks there might be evidence of an earlier stress fracture which has healed. That was surprising to her and I since Katie has never complained of any pain in her foot until now. I also asked about the fluctuating ANC numbers when I talked to her this time and she explained that differences like that can happen in patients and that it could also be a result of different labs testing the blood. Either way, the lowest reading was still above the cut off for treatment. That is why we were cleared for treatment yesterday.

The next challenge of the morning will be to get her into a tub. Bath time has become more and more of a struggle for some reason and baths or showers are never welcome any more.