Katie's Wish - Journal - October 18, 2005

October 18, 2005 -- OT visit #7
another great monthly CBC, PT appointment, visit with Isabel, Light the Night

Katie is 8 months OT and a 7 month survivor!!!

Physical Therapy
Katie had an evaluation with a physical therapist on Friday, October 14th. She was fitted with temporary orthodics to help strengthen the muscles on her outer leg muscles and on her ankles. This will help with the flopping feet that are a result of the vincrisitne. The flopping is most noticeable when she is tired and towards the end of the day when she gets home from school. The orthodics, which run from mid-foot to mid-calf, will help force her to use the muscles that are weaker. Katie returns next Friday for a follow-up.

Oncology Appointment
Katie had her #7 OT appointment today, October 18, 2005. All of her blood counts were in normal range and her ANC was good!!! She also got her flu shot. After talking with the NP about her PT visit, Pattianne (the NP) felt that we should also focus on her hip muscles. Her theory is that with the steroids adding bulk to the kids in their mid-sections, it leaves their hips weakened, which results in not being able to run and keep up with the other kids. She suggested we work on her hips in PT as well as her legs. Katie returns in a month for another CBC.

Nutritionist
We are scheduled to see a nutritionist in mid-November to discuss Katie’s diet. It is very common for kids treated for ALL to put extra weight on after treatment ends. Katie has gained four pounds since June (but has also grown taller). We just want to be sure her diet stays balanced so her height and weight are in a good range.

Our Visit with Isabel
Katie, Kyle and I went to visit Isabel with another little girl who is still in treatment for ALL and her mom. The girls had fun doing crafts together. Isabel’s skills and energy improved a great deal after being home from the hospital and off the chemo. She is still getting morphine for her pain and Tylenol for her fevers. She has been up and walking a bit without help from time to time.

Last week, Isabel had a bone marrow aspirate. It was not good news. Isabel has about 80% blasts (leukemic cells) in her marrow and it is now in her blood stream at 11%. She is still doing well, but if things do not get better soon, Isabel will start to feel the effects of the leukemia. Isabel continues to have pain in her left foot. She had it x-rayed and are waiting for the results as to if it is broken or it just has too much leukemia in it. They will give her a quick dose of radiation if it is the latter.

Since Isabel has relapsed 5 times, and the last 3 were close together and while she was on treatment, the hospital won’t give her a bone marrow transplant. Isabel started an experimental drug (not chemo) which is supposed to target the blasts (leukemic cells) while leaving the other cells alone. She also nutritional products from Mannatech which have had positive results in terminal cancer patients. Her family is asking for everyone to continue their prayers for Isabel’s healing.

The multitude of trips to the hospital over the past several months have taken a financial toll on Isabel’s family. Many of you asked if there is anything you can do to help. I thought getting a Wawa gas card would be helpful and Isabel’s mom agreed that they could really use it. If anyone has any spare change to donate or would like to send a Wawa gift card directly to the family, please contact me.

To leave Isabel a message in her guestbook, please visit her CaringBridge website. Visit "isabelturse" and enter your email address. She'd love to get a message from everyone!

2005 Light the Night Walk
Thank you to everyone who walked with us and/or donated money to help fight blood cancer!! We appreciate your support.

The Light the Night Walk was Saturday, October 15. The weather was beautiful!! There were 1200 registered walkers, and many, many more who were not registered but participated in the walk. We had a great turnout for our team! We had around 65 children and adults, including 2 of Katie's friends who are still in treatment, walked with us!! Their were 5 white illuminated balloons (survivors, patients, angels) on our team: Katie (survivor), Alexandria (patient), Katie D. (patient), one in honor of Isabel (patient), and one in memory of Kyle Snyder who lost his battle 7 years ago to the day. The rest of us carried red illuminated balloons as our symbol of support for them.

The kids had fun in the moon bounce, dancing to the music and eating hot dogs and pretzels. This year was extra special for Katie. She celebrated 7 months of survivorship, and she walked the entire 2 miles!! I gave a little speech at the opening ceremony (it’s posted on our web site if you are interested in reading it). We will be tallying the donations raised by our team and will continue to post the numbers on our web site through the end of the year. We will continue to accept donations through the end of October for this fundraiser.

Final Note
I am often asked when we will stop worrying about the leukemia returning. It is always on our minds. The mornings of Katie’s CBCs are nerve racking and very stressful for me. The nurses and doctor won’t see a smile on my face until I see that Katie’s labs are normal and they say “Everything looks good!”. We celebrate each month of survivorship that goes by, and it does get a tiny bit easier as each month passes. Maybe someday we can get through a day without thinking about it. But, for now, we will worry — every time Katie feels tired, every time Katie gets a bruise, every time Katie looks pale, every time Katie gets a fever, we will worry. We worry about Kyle when he feels feverish, looks sick or has bruises, too! Maybe some day we will be able to rest easy — but not today.

We thank you from the bottom of our hearts for all the love and support you have shown our family. We hope you will continue to keep Katie in your prayers.