Katie's Story - Journal - November 10, 2004

November 10, 2004 -- Maintenance #6 (Days 7-28)
well visit with pediatrician, Another ER visit, Halloween, swimming, clinic visit, apprehension about OT

14 WEEKS, 3 DAYS, and only 3 VCR/DEX PULSES and 1 LP TO GO!!

Katie had a well visit with her pediatrician on October 27. She is in the 40-45th percentile for height and 45-49th percentile for weight. Her eye sight and hearing are in normal ranges. She is developing normally despite the leukemia and osteopenia.

Katie went to the ER on Friday evening, October 29th with a fever of 101.7. Fortunately her ANC was over 3000 so we were able to go home at 3am after her infusion of Ceftriaxone (a broad spectrum antibiotic). Saturday was spent catching up on sleep!!

She was well enough to go to the Halloween party sponsored by the Phillies for the kids of CHOP oncology on Sunday morning, October 31st. The Philly Phanatic and some Phillies players were there to entertain the kids and sign autographs. They had games, dancing, face painting, balloons, pumpkin painting, food and prizes!!! It was loads of fun!! At night, Katie and Kyle went trick-or-treating with some friends. Katie said it was the BEST Halloween ever!!

Katie started her "eel" swimming class on November 6. She was a little timid at first, but enjoyed it. She'll be going every Saturday until the weekend before Christmas.

Katie went to the KOP center today for her vincristine (IV chemo). Dr. Julie wasn't there, but Dr. Ann Leahy was (she does Katie's spinal taps). Everything went well with her exam and all her counts were good. She goes back in 4 weeks.

I expressed my apprehension about Katie going off-treatment (OT) with Dr. Leahy. Here's what will happen... Katie will have her last LP on January 5th, and her last IV VCR on February 2nd. She will continue to take all of her meds at home through February 19th. Then, that's it--no more chemo! She can get her port out after her last VCR (we'll schedule the surgery at that time). Katie will still be monitored closely, returning for a CBC every four weeks and a full physical exam every 84 days.

I told Dr. Leahy that we are excited and scared at the same time. Excited that Katie can begin to have a normal life again, and scared about her staying in remission without the chemo. Dr. Leahy said that is a common misconception about being on chemo. Being on the chemo doesn't guarantee that she stays in remission. The longer she goes without relapse (cancer returning), the better. She said that kids could relapse in the bone marrow or in the central nervous system at any time, or, they may not. The doctors will be keeping a close watch on her CBCs every month after she goes OT, just as they have since diagnosis, to look for signs of a possible relapse.

They don't like to use the term "cured". "Event-free survival" is preferred, which means survival with out relapse or death. <sigh> Our worrying will NOT end when her treatment does.

Christmas is quickly approaching. As many of you know, Katie was diagnosed Christmas eve 2002. We spent Christmas and the next 21 days at CHOP. While we were there, the generosity of people we had never met was overwhelming.

Many of the kids that are on the oncology floor have been there for months -- yes months! -- and the financial burden for some of these parents is tremendous. If you are interested in donating new, unused, unwrapped toys and gifts to the kids at CHOP for the holidays, they can be sent to:

New photos have been added -- Katie's first day of school, her October clinic visit, Light the Night. Just click the September link on the photos page and you can go on from there. If you have a chance, please leave a message in Katie's guest book.

We can't thank you enough for keeping Katie close to your hearts and in your prayers. Please continue to pray that she remains in remission. We deeply appreciate it.

Here is Katie's ANC and chemo/meds since last update:

October 29, 2004: ER with 101.7 fever. ANC 3000+, received Ceftriaxone infusion and sent home.

November 10, 2004: ANC 2920, received IV VCR, at KOP Specialty Center. Continue 100% chemo/meds at home -- 50mg (1 tablet) 6MP every Mon-Sat evening and 75mg (1-1/2 tabs) every Sun evening, 15mg (6 tablets) MTX weekly on Wednesday evenings, 2mg DEX 2 times per day for 5 days (November 10 pm through November 16 am), 1/2 tab Bactrim 2 times per day for 2 days (Friday through Saturday), 1 Tums daily or 1 Viactiv daily, 1/4-1/2 tsp Zofran every 8 hours or as needed for nausea, 1/2 capful Miralax as needed for constipation/hard stools.

Return in 4 weeks (December 8) for CBC and IV VCR at KOP Specialty Center.