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April 20, 2005 -- OT visit #1 KATIE'S 2 MONTHS OT!! Katie had her 2nd OT CBC on 4/19. Her ANC was 2173!! Her while blood cells, platelets and hemaglobin are all in good ranges!! She's doing good!! Katie still has the rash on her face, head, neck and chest. We've been using an anti-itch dandruff shampoo, and Aquaphor and Cetaphil on her face, but it's not helping. She'll need to see a dermatologist. Katie still has an abnormal gate -- her feet make a flopping sound when she walks and runs. Katie also still has difficulty going up and down stairs without stopping at each step with both feet. It's not as bad as it has been, but Dr. Julie feels she should start physical therapy now, because she should have had more improvement after being off the VCR for two months. [Vincristine (VCR) is an alkyloid derived from the periwinkle plant. It causes cells to stop dividing. Side effects are most pronounced during induction and consolidation when given weekly. It is generally better tolerated during maintenance when it is given monthly. Given by IV injection. The side effects include temporary hair loss; muscle loss; bone, back, or limb pain; nervous system effects such as loss of reflexes, or difficulty walking.] Katie no longer has to take her Bactrim!!! She is now completely med-free!!! [Bactrim is an antibacterial combination drug prescribed for the prevention of Pneumocystis carinii pneumonia in people with weakened immune systems.] Katie's next CBC appointment is on 5/17. She will get a full physical and labs at the following appointment in June. OUR VISIT WITH MAKE-A-WISH Lauren, our WISH consultant, met us at the clinic yesterday to go over the details of Katie's MAKE-A-WISH (MAW) trip to Disney World. She brought Katie some goodies -- a MAW backpack, a MAW T-shirt an a bunch of other goodies. There will be another family from CHOP going to Disney the same time we will. We have planned a few activities to do together. We will be saying at 'Give Kids the World Village', which is a special place for wish families to stay. It should be a very fun trip!!! COOKING AT STEFANO'S RISTORANTE ITALIANO Katie was invited to cook with Stefano at his restaurant on Wednesday, April 13. She was overwhelmed and didn't want to participate much. So, she got a private cooking lesson from Stefano instead!! Katie also got a tour of the kitchen, met the other chefs and we all enjoyed an absolutely spectacular lunch compliments of Stefano!!! Stefano's Ristorante Italiano is located at 2519 Huntingdon Pike, Huntingdon Valley, PA. COOKING AT GILDA'S CLUB Katie went to a cooking class at GILDA'S CLUB last night. Her 'girl cousins' (as she calls them) were there, too. They made brownies that were delicious. We are looking forward to next month's cooking class!!! The recipes from chefs, restaurants, food companies, friends, and family are still rolling in! We have two restaurants in the Philadelphia area who will be hosting cocktail parties to promote the cookbook when it is released this summer. Chef Little of Everymay on the Delaware has offered to "use some of [his] influence to spearhead the entire chef side of the project." We are thrilled beyond words!!! Thank you for the continuing prayers and support for our family. We truly appreciate it!! |
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