Day 7: The Return Home

Our final day on our wish trip to Florida was spent shopping for souvenirs and traveling. We had a final breakfast in the village, spent some time just relaxing and enjoying the Florida weather, and then packed our bags for the airport. At 11am, we checked out of the Give Kids the World village, and hopped over to Downtown Disney for some souvenir shopping. Josh quickly spotted a Lego store and both Josh and Katie browsed every section of the store and came out with enough Legos to keep them busy for the next several days. Lego and souvenir shopping complete, we grabbed a quick lunch and then headed for the airport. Shortly after 9pm we arrived back in Burlington Vermont right at the tail end of a snow storm. There were 6 to 8 new inches of soft, powdery snow waiting to welcome us home. A limo was waiting to transport us home from the airport, a 2-hour trip in good weather. The trip took about 3 hours this time and all four of us ended up falling asleep during the ride. Our Disney vacation had tired us all out.

Even with a good night's sleep behind us, we are all still moving slowly today. The kids have both been assembling their Lego creations and watching movies. We need a couple more days of rest. With school starting up again on Wednesday, life will resume its normal pace soon enough.

Josh Learned to Ride a Bike

Katie's brother Josh learned how to ride his bike today without training wheels. He really took right off and Amy ran in the house to grab the video camera so that we could share the moment with everyone. Katie is in this video too... Chasing after the bike telling her brother that she is going to catch him.

Gone Fishing

It was a beautiful day here today. The temperature hovered in the 70's and the sun was out all day long. After some chores around the house and a trip to the barn, I asked the kids if they wanted to do a little fishing. Their answer was a resounding YES!














We live within walking distance of Crystal Lake and the Barton River so I gave the kids the option of riding their PowerWheels Jeep and ATV to the fishing hole. They jumped at the idea and we quickly strapped the poles and tackle boxes to the vehicles and took off.

While fishing, they also played in quite a bit of dirt. Katie isn't wearing camo face paint, that is dirt mixed with sun screen. Both kids caught fish and I was happy enough just helping them do it. Maybe next time I will catch a fish too.

Chemotherapy and a So-So Weekend

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

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

Day 1 Back at Home

We arrived back at home with Katie last night around 7pm. She was tired even after sleeping in the car for most of the trip home. She watched a Dora video and relaxed a bit before going to bed. This latest stay at the hospital was one of the most emotionally traumatic that she has ever had. She was mad at the world for the entire time she was in the hospital. This morning she is starting to act more like her playful, pleasant self. However, she has made it clear that we are never supposed to bring her back to the hospital again.

Her mouth sore is a little better this morning but it still hurts her. She cried at breakfast when some food touched it. One of her medications for the sore contains some Liticain to lessen the pain and that helps tremendously. We have to apply that every hour for now to keep her suffering to a minimum.

Today is our last day of vacation. Tomorrow we go back to work and Josh goes back to school. Katie is scheduled to spend the day with Grandma and Grandpa again. Lucky for us, they are still able to watch her during the day until she can go back to day care again.

She's Coming Home

Now that the return of cancer has been ruled out and her infection is responding well to treatment, the doctors are sending Katie home again. We have been told not to expect her ANC to rise for another couple of weeks, but they don't expect any additional problems. It looks like this was all just one big scare and I for one am glad that it is over.

Christmas at Home

Christmas has come and gone and we were able to celebrate it at home. Katie was feeling great. In fact, all of us were healthy. The kids were very excited to open presents Christmas morning, and I captured plenty of video. I won't bore you all to death with all of the video from the day, but if you are interested I have uploaded a couple of short videos of the kids opening presents.

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.

Trick or Treat

Halloween was definitely a treat this year. We took the kids walking around town with 13 other kids for 3 hours trick or treating. They loved it. Katie was trick or treating like a pro. She followed her brother up to one front door after another. He knocked, they both said "Trick or Treat" and they both said thank you after the treats were delivered.

Here they are carving up their pumpkins the night before Halloween.

Here is Katie in her little lion costume. This was Josh's costume when he was younger.

Here is Josh in his Optimus Prime costume. He was very happy to be dressed up as a transformer.

After almost 3 hours of trick or treating, Katie was looking pretty tired. Josh was dragging his feet by then too.

When we got back home she perked up just thinking about all the candy in her pumpkin. In the picture she is straining to hold it up for the camera.

An finally, here are the pumpkins that we carved all lit up in front of the house. I (Rick) carved the one on the left from a pattern using my Dremmel. Josh thought that was pretty cool.

Life Returns To Normal

It's a new normal, but it still feels as close to normal as we have been in a long time. We get up every morning, get ready for school, drop Katie off at day care and Josh off at school then we head to school ourselves. At the end of the day Josh joins us at LR and we all go to daycare to pick Katie up. We go home, have dinner, relax for a bit, go to bed and repeat. Katie feels fine for the most part. She is still three, so she is prone to the occasional tantrum although they are typically short. A good nap in the afternoon really helps.

Katie really had a great end of the week once she started staying at daycare all day. She napped very well with the other kids, ate what they ate, and even started using the potty. She had been refusing to use the potty at home.

Today has been much the same. She has really been in a great mood with lots of energy to spare. It was my (Rick) birthday today so we dragged Katie out to breakfast, then to my parents house, then to her Nana's and grandpa Jerry's house for dinner. She is running on just a 15 minute nap that she snuck in on the way to my parents house, but she has more energy in her right now than Amy does. She is still dancing around the house as I write this.

Daycare Success

Katie went to daycare for the first two days of this week for just half of the day. She handled those half days pretty well, but she seemed very tired by the end of the day. I had asked my parents to pick her up at the half day point to make sure that she was able to come home and get some sleep so that she wouldn't be overwhelmed by daycare, but she wasn't sleeping much in the afternoon after being picked up. So, today we tried a full day at day care and let her take her nap there. It worked like a charm. She took a full two hour nap after lunch. When I picked her up from day care today she was happy and energetic and ready to play. She remained in a high energy, happy mood for the rest of the night. She walked to the store and back home again with Amy. She climbed up the stairs here at home several times and she climbed back down the stairs for the first time in months. Amy and I are incredibly happy to see her doing so well and we are hoping that things continue to go in this new, positive direction.

Musical Sunday

The kids are in a rare mood today. I am trying to get some work done at my computer and the kids are dancing, singing, playing instruments and just plain having fun with anything musical and noisy. It is good to see and fun to watch.

Katie is pushing the limits of her physical abilities and suffering the consequences on occassion. She has fallen down and gotten several new bumps and bruises today, but she has shaken most of them off and gotten right back to whatever she was doing. At least one of her new bruises is going to be with her for some time I would guess. Just a few minutes ago she grabbed Josh around the waist and lost her balance as she tried to cling to him. As she fell over, she bumped the back of her head on the edge of a chest filled with blankets. She broke a blood vessel and it left a big bruise almost immediately, but she shook it off quickly and is now making a fort with Josh and his friend Jack in Josh's bedroom.

Parent Sick

Amy and I have noticed a pattern of behavior from Katie when we leave the house in the mornings no matter who we leave her with. She seems fine in the morning, even energetic and ready to go. However both Kathy and my parents report that she wants to do nothing all day long after we leave. We don't get to see it though because the second we walk through the door, she rushes out to greet us and then plays happily for hours. I think she has gotten a little used to our non-stop company over the course of the summer and watching us leave each day puts her in a funk. We get to resume our lives and she stays stuck at home. It will be good to get her back in day care where she can feel a little more normal herself.

A Hum Drum Day

Katie didn't do much today. I don't know exactly if she wasn't feeling or if she was just upset about being left at home with Grandma while the rest of us went off to school, but she spent all of her day on the couch not wanting to do anything but watch Dora. There was evidence that she just didn't feel well. This morning as we were getting ready for work she was complaining of feeling bad and she was displaying signs of a possible low blood sugar. Nothing really low, but maybe just low enough to feel crummy. So I started her off with some orange juice. It didn't help. By the time we were ready to go, Amy gave her a dose of Ranitidine and Zofran to combat other potential causes of her crummy feeling. That didn't work either. The Ranitidine tastes bad and Katie gagged on it. Then she vomited all over herself, the couch, and her blankie. But immediately after, she said that she felt better and she seemed to truly be feeling better as we headed out the door.
But then she had her blah day and it was easy to believe that she wasn't feeling better after all. That is, until Amy and I returned from work. She got off the couch for the first time to greet us with very enthusiastic hugs and she has been playing well ever since. So who knows what inspired her day.
Right now, she is getting tired and cranky. It is almost time for bed.

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.

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 www.allaboutmollie.blogspot.com. Amy and I will be sure to check it out.

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.

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)