Congratulations and Happy Travels

Congratulations to Rick's dad, Rick Sr., who completed his last day of paid work today. He has officially retired from the city garage in Newport, and he seems to be very happy about this decision. The van is packed and ready to roll. We wish Rick and Jean a terrific trip to Florida. We are sincerely hoping they will return with some sunshine in a few weeks.

Those of you who teach with us know how significant it is that the fourth quarter has just started. We are in the home stretch. Given that we learned about Katie's illness two days after the third quarter opened, it would be safe to say that this has been a long semester thus far. Rick is posting grades as we speak. I finished mine at school this afternoon. While this is more a basic requirement than a major achievement, I'm proud of us for turning in grades on time. We continue to follow the rhythm of the school year. I have always been in school--literally--and its routines are comforting. I had my post evaluation conference today, and that was fine. I wrote an IPDP so I could renew my license. I'm gearing up to teach a new class next year. I love my job. I have never been so torn between work and family, though, as I have since Katie became sick. She was crying when we left the house this morning, and I felt like a failure. I had such a hard time leaving. I knew that both Katie and my mom would be fine--they had another really great day together--but it was difficult to walk away. I made Rick call home at lunch because I didn't want to hear Katie fussing in the background. I am such a wimp. As it turns out, however, Katie and Grandma were having a grand old time. They watched Dora movies, they read Dora stories, they ate and ate and ate...Katie splurged this morning and treated Grandma to an unsolicited statement of her affection: "I love you, Grandma." Thanks to Grandma Kathy, we can continue to manage the competing demands of our lives even when I am torn in different directions.

We had lots of help from friends at school today, too. They conspired to fill the refrigerator. Katie was interested in the meatloaf, the potato casserole, the stuffed shells and the apple pie, so we heated it all up, and this made for quite a dinner. (Frozen broccoli was my only contribution!) Neither of us has lost any weight, I might add...

Katie continues to find mornings difficult. Her sleep schedule is off by two or three hours, and she generally feels lousy until the Zofran kicks in. Once it takes the edge off her nausea, Katie is in better spirits and ready to play. She is really interested in costumes these days. She wears Dora sandals with socks, and she has a new interest in hats. This makes for some quirky ensembles. Josh is a sharp dressed man on his way out the door in his uniform, but Katie could use some fashion help. While it is hard to imagine that she will ever wear a skirt without lifting it to show off her derriere, I do look forward to sending her out into the world in a uniform, too. If only I could wear a uniform to school...

Peanut Girl has a dry cough that makes sleep difficult, and she is hacking on the keyboard as I type. I'm off to find a solution to this nagging little problem. Good night, all. Thanks for listening.

A Furry Visitor

The cat's name is Tyson and he belongs to Katie's Nana. She just adores him and requests visits all the time. Every now and then I give in and bring him home. Tonight, I didn't tell her that I was bringing him home, I just showed up with Tyson in my arms. Katie was thrilled. In the picture, Tyson had already been in the house for a couple of hours but Katie was still following him around and hugging and petting him every chance she got.

As for her overall health today, Katie was generally fine except for some nausia and a general yucky feeling that kept her from romping and playing like she had been a couple of days ago. Still, this was a pretty good day.

Feeling the Cytoxan

Katie's cell counts may still be really good at this time, but she is definately feeling the effects of the Cytoxan that has been pumped into her body. She took a little longer to get going this mornig and had a little less energy to sustain her until nap time. She did, however find enough energy to have some fun playing in the homemade tent pictured to the right. The tent is actually her art easel with the futon cover draped over it.

She has had a little nausia trouble, despite the Zofran that she had this morning and her appetite is suffering as a result. Food orders have been traditionally huge for a person of her size, but most of the food goes untouched. Luckily, she will drink when we push it so the Cytoxan should be flowing out of her body just like it is supposed to and not hanging around to damage her kidneys.

The Snuggler

Snuggler is an appropriate title for Katie today. She was much less of a commanding presence and much more of a tired little girl after her long day yesterday. We started the day by sleeping in late and then walking down to the local restaurant for breakfast. Katie wanted everything on the menu until breakfast arrived, then she filled her belly with home fries and was happy. We came home after breakfast planning to call a friend and arrange a play date for the morning, but Katie had other plans. She said she was tired and just wanted to snuggle so we curled up on the couch to watch some Dora until she fell asleep. I fell asleep first. After our morning nap, she wasn't feeling as well as she had been earlier, so we just played around the house, but she was never more than five feet away and usually she was in my lap or in my arms. I was the happy recipient of lots of hugs and kisses today.

This evening, after Amy got home and we were in the process of getting Katie ready for bed, we gave Katie her first shot at home. She was not very pleased about the idea, but it was much simpler and less traumatic than going to the doctor's office. She struggled and cried, and I had to hold her down just as firmly as if we were at the doctor's office, but she stopped as soon as we stopped. She didn't like it, but she agreed that it was better to get the shots at home than at the doctor's. And so it begins...

Right now, Katie and her mother are all snuggled into my bed, sound asleep, without a thought as to how much room might be left for me. So, I'll just stretch out in Katie's twin size bed and get a little sleep myself. Good night.

Queen of the Infusion Bay

I never really doubted Katie's potential as a world leader, but my worst suspicions were confirmed today. She will not be running for President because she will be far too busy proclaming herself Queen. We had a busy but very good day in Burlington, and Katie enjoyed herself immensely. (Isn't this a cancer blog?)

We got off to a good start this morning. Katie did not have any big procedures today, so she was allowed to eat and to drink. Her counts were high enough that we could safely stop in Johnson for coffee, and Katie could come in! She browsed every shelf in the mini-mart before selecting goldfish crackers and milk. Go figure. She was simply happy to have had opportunities to mingle. She talked at me from Barton to Burlington. She made me turn the radio off several times so she could have my undivided attention: "Turn the radio off, Mom. I have to tell you something." Yikes.

I was afraid this would wear off before we reached Burlington, but she raced me down the hall to the Children's Specialty Clinic. She was running and laughing as we entered, happy to see the ladies at the front desk and completely cooperative (for the first time) with Jess, the nurse who does the vital signs. Shannon was ready for us, with Dora already loaded in one room of the infusion bay, and Katied trooped right in on her own. She climbed into her chair, and off we went. She fussed very little when Shannon accessed her port, and she enjoyed her reward: an inflatable ball with the rubber band handle that she then danced with joyously, bopping herself and whacking me in the head with this thing as she sang the ABCs. We were off to a good start.

Katie had lots of visitors today. Heidi brought Katie a monkey, and she loves it. The folks from the Vermont Teddy Bear factory brought bears for the kids to stuff and clothes they could choose for their bears, and Katie thought this was great. She also met Monte, the hospital's mascot, a very large moose. Penny and Alex came to visit, as did the Child Life folks, and Katie had interesting tales to share with all of them. Nurses and doctors were in and out all day--we saw Dr. Homans for the first time in many weeks--and Katie was inspired to entertain. At one point she was standing on the bed in the infusion bay, clad in a diaper and striped knee socks, shaking her booty: "Dance, dance, boogie!" Grandma Kathy and Dora have been trying to teach Katie to share, and their efforts have paid off. Katie elected to share her precious stash of Pirate's Booty. She parceled out servings, one piece at a time, to all the infusion bay staff--the way a queen might reward her loyal servants with token gifts. Yikes. The good news is that Katie told everyone who would listen that Shannon takes good care of her. It's true. I hope Shannon knows just how much Katie really does appreciate her help.

(I appreciate Shannon's help. She taught me how to give subcutaneous injections today. I changed into shorts and let Katie watch as I gave myself a quick shot. I think Katie almost believes that these particular shots won't be so bad. I almost believe that this will be fine. We're determined to make this work. We'll let you know.)

We left the hospital much later than I had expected, so that limited our fun options. Uncle John was at work and the aquarium was closing, so the golden arches looked pretty good. We took Grandma and Grandpa to McDonalds and then to Kmart. (We know how to celebrate...) All I have to say about these episodes is that it is easy to remember, when Katie feels well, that she is two years old. (Why do little kids think its funny to run away from their frazzled parents in crowded discount stores?) I was glad to put Kmart behind us. Katie clearly had more energy to burn, so we surprised Auntie Heather and Uncle Ryan with a visit. This was another highlight of our day. Katie enjoyed the freedom to run and play in a supervised space. She was very happy to see Kyler and to check out his new room. Kyler made Katie a wonderful paper crown. I laughed as I thought about it on the way home; even her cousins are willing to serve Princess Katie.

I know, in my head, that Katie will get sick again, and soon. The drugs she took today are truly awful, and they will challenge her body. That is what makes us so desperate to fit fun into the good days. It is hard to reconcile Katie's behavior today with her diagnosis. No one would ever guess that she is a cancer patient. Even her doctors were pleasantly surprised by just how animated and energetic she was. I am tired, but I am very glad that I spent this day with my daughter.

Good News!

Rick just dragged me out of Joshua's room. I was sleeping peacefully, curled up in a lump with my sleeping boy, who smelled so sweet after a bath with his sister. (Joshua did so well today. He was reading and spelling words we made on the walls of the tub with soft foam letters. He was having fun with the bubbles and cheering Katie along. He is such a resilient kid...) I wasn't eager to leave his sleepy little self, but I wanted to give you the further good news:

Katie's cell counts are all good--all of them--so she will begin the second phase of consolidation treatment tomorrow morning at Fletcher Allen. Her Absolute Neutrophil Count (or ANC) is absolutely normal. This is surprising given how low it was just last week. Katie's body continues to power her along through a daunting regimen. She is a miracle, as is the science that allows her to heal and to grow. You would never know that Katie has cancer. She took a long nap for Grandma today, and it really charged her batteries. She ran and played. She shrieked and shouted. She peed on the potty. She was raring to go when she woke up, and it was a pleasure to run about after he (although we couldn't really keep up). Rick is in bed with Katie at the moment. He is probably sleeping, but I can still hear Katie...

Katie will have cytoxan (cyclophosphamide). cytarabine (Ara-C) and 6mp (mercaptopurine) tomorrow. These are the drugs that really depress her cell counts, so we can almost count on more frequent visits to Burlington two weeks from now as her cell counts bottom out again and we need blood products. We plan, therefore, to make the most of our journey into the Queen City tomorrow. Isolation is one aspect of this treatment that Katie just does not like. She needs people. She cried, Tuesday night, when we could not wait INSIDE the restaurant for the pizza we had ordered. Take out just doesn't cut it when there are live bodies just through the door that she would very much like to go visit. She is overdue for an adventure of some kind. We have to prove that the hospital is not the only attraction in Burlington. I don't know what we'll do, but we'll find some fun somewhere!

Here's a funny thought for you: Katie will need subcutaneous injections of cytarabine for three consecutive days beginning Friday, and the doctors have suggested that it might be less traumatic for Katie to receive these at home in the safety of her own space. This would mean fewer trips to Newport Pediatrics. While we are happy to visit the pediatrician in Newport, we don't want Katie to associate her office with SHOTS. When we asked Katie about these shots, she expressed a clear preference: "Mommy do it." Yikes. The current plan is that I will learn how to give Katie shots while Rick holds her. I will practice on my own leg while Katie watches so she can see how this works. I'm not completely convinced that this will reduce Katie's anxiety, but I'm willing to give it a shot. (Ha, ha, ha...)

On that ridiculous note, I'm going back to bed. Good night, all.