Katie's Wish - Journal - September 21, 2005

September 21, 2005 -- OT visit #6
another great monthly CBC, check-up with Dr. Julie, Katie meets Sandra Lee in NY, more on the cookbook, prayers for some heroes

Katie is 7 months OT and a 6 month survivor!!!

Katie had her #6 OT appointment on September 20th. All of her blood counts were in normal range and her ANC was good! She was evaluated by Dr Julie and there are still some things we need to work on with Katie. She is still showing signs of some lingering effects from the vincrisitine. Her gait and physical strength are much improved, but Dr Julie felt we should have Katie evaluated by a physical therapist to help with her muscles. She still has a tendency to flop her feet while walking, running or descending stairs, and it is most noticeable when she is tired.

Sometimes Katie will complain of back pain, but Dr Julie felt that her compression fractures have healed and her osteopenia has improved just by being off treatment and off the steroids. Dr Julie felt that is was probably from fatigue and the fact that Katie’s brother Kyle plays a bit roughly with her. Katie was thrilled to show Dr Julie that she can jump up and down on her one foot. She did this for the first time last week!! We are very happy and proud of the accomplishments Katie is making!!

The food cravings from the steroids are gone, but her craving for salty and white foods has remained. We need to make an appointment with a nutritionist to work with us in helping Katie get back to eating a healthier diet.

Katie started Kindergarten on September 12th. She goes for a full day and loves it!! I have noticed that Katie has trouble concentrating on her homework. I'm not sure if it is an age thing or if is a result of the chemo. Dr Stern said it could be a combination of both and I should speak to her teacher about it.

Last week, we got a call from the office of Sandra Lee, a Food Network TV host/chef. (Sandra wrote the forward for the cookbook and donated a recipe, plus she was kind enough to get recipes from Emeril and some other Food Network people for us!!) Katie was invited to NY to meet Sandra at her hotel. John, Katie and I took a train up to NY on September 14th. Katie loved the train ride. After we got to NY, Katie hailed us a cab (so cute!!) and we went to FAO Schwartz to show her the giant toy store, before heading to Sandra’s hotel. We met Sandra in the lounge for some refreshments. She ordered Katie a Shirley Temple in a martini glass -- Katie thought that was the coolest!!! We chatted a bit and then went to the Central Park Zoo. We all had a blast!

After the zoo, we met my long-time friend, Ed at Ellen’s Stardust Diner (it’s a retro 1950s theme diner is filled with nostalgic memorabilia and singing wait staff). Katie loved it there and thought it was pretty neat when our waitress got up and sang a song to her. On our way back to the train station, we walked through Time Square so Katie could see all the lights. It was a fun-filled day that Katie will be talking about for a LONG time!!

Many, many thanks for your continuing thoughts and prayers for Katie and our family, and your support of our efforts through KATIE’S WISH.

News

Katie’s Cookbook
John and I have been working non-stop on the cookbook. We have several people who are diligently working on proofreading the recipes and helping in other ways. We want to thank them all for their hard work and help! -- Sandra Lee, Erika Roberts, Ann Edwards, Karen Esraghi, Lisa, Cathie Cush, and Sharon Snyder — THANK YOU, THANK YOU for all you are doing!!!! We greatly appreciate your help!!

Please click here for more.

Heroes

It is a difficult road for these and all the children who are battling cancer, as well as for their families. Please keep them in your thoughts and pray for their healing.

Isabel
Isabel is still waiting for her bone marrow transplant. She has had a fever for several weeks and has been in the hospital for 5 weeks now. Her blood counts have been low so she has not been able to get any chemo. She had a CT scan on Friday that revealed that the fungus is now in her lungs as well as her spleen, which is causing her a great deal of pain. Her past two journal entries read: “... Isabel is wiped out and sleeps a lot. She tolerates the fever and the retching that happens with her fever... We are just sitting and waiting now to see what happens...” “...The fungus should go away in a couple weeks if all goes well. Let's pray for that and more importantly, that the leukemia does not come back in that time...” It sounds as if the doctors want her fevers and infections gone before she has the transplant.

If you have a moment, please leave a message in her CaringBride guest book.

You can also send e-cards to be delivered to her hospital room (Isabel, Oncology-3C room 07).

Baby Anthony
Please say a special prayer for 16-month-old, baby Anthony. He has leukemia in his spinal fluid, again. It has been termed cancerous meningitis. He needs to heal and go to transplant. Just a few days ago, the doctors told his parents to take him home to die with family, but his parents are still fighting for him. Baby Anthony is hanging in there. He has been given a lot more chemo to try to get him into remission again. It has given his parents some hope.

Gina
13-year-old Gina, was taken out of school on Friday and ended up at CHOP where she was diagnosed with acute lymphocytic leukemia (ALL). Her family has asked that if anyone has access to a prayer list or prayer chain at their local church, to please have Gina DiMedio & her family added.