February 21, 2006 -- OT visit #11
dietician, staph or strep, school and extracurricular activities, normal counts, Courageous Kids, cookbook update, cookbook events, awareness shops, statistics

Katie is now 1 year OT and an 11 month survivor!!!

Dietician appointment
Katie went to see a dietician a few weeks ago. We were given some tips on helping her eat less calories — not necessarily healthier. I don’t feel that giving a child who had cancer —or any child for that matter--“diet” food filled with artificial sweeteners and all kids of crazy chemicals, is a good idea. I had explained that many kids treated for ALL (acute lymphoblastic leukemia) end up having a weight problem. The dietician hadn’t dealt with any kids treated for cancer. She didn’t seem to think there was much of a concern with the extra few pounds Katie has. We were told to just weigh her every month and see how things go. If Katie’s weight continues to grow faster than her height, we will look for a dietician that has experience with kids who have been treated for ALL.

Staphylococcus or Streptococcus
Katie was battling what we thought was a staph skin infection a couple of weeks ago. It started with her getting small read bumps on her chin that spread to her privates and bottom. We spoke to a nurse practitioner about it on Wednesday, February 8th. She felt that is was a staph infection. We took Katie to the pediatrician on Thursday, February 9th to have the biggest one on her face lanced so they could test the gunk inside for a viral or bacterial infection. The pediatrician also believed she had a staph infection and had us treat it as such.

Katie was to take a sitz bath in a weak bleach and water solution once a week until they are gone, and use topical cream (Bactroban) on all effected areas three-times per day for a week. Saturday afternoon (February 11th), we got a call from Katie's pediatrician and the bacterial part of the test came back positive for strep (not staph). The viral tests came back negative. She was on 10 days of Amoxicillan in addition to the Bactraban. The pimples and sores have been healing slowly. She still has marks on her face, but hopefully they won’t leave any scars.

Katie in school and extracurricular activities
When we received Katie’s report card several weeks ago, she was doing outstanding in school!!! She joined the reading club at school and finished the all books for the year in early January!! The one area that she did not do well in (if you compare her to the other kids) was in PE. At first, she was very upset that her PE scores were below average. John and I explained to her that her muscles are still recovering from all the chemo she had. She knew that she has been improving a great deal and that she can do many more things than she used to be able to do. I told her that every three months when she goes for her full check-up, Dr. Julie will tell you how great she is doing. She asked me why her PE teacher didn’t know that she was improving. I told her that I had never told her PE teacher that she had cancer, so he didn’t know all the things she had been through. I guess I never thought about her being graded in PE or how she would react to it. I need to speak with her PE teacher and find out how they base their grades. She will probably never be as fast the other kids. And, comparing her to the other kids in this area could shy her away from wanting to try harder.

Katie is now taking 2 swimming classes a week and is doing very well. She wants to try tennis and cheernastics (cheerleading, gymnastics, and dance combined). She is also very interested in learning to play the piano and guitar. John and I are supportive of any activity she wants to try. We’re going to let her do a few tryouts before we sign her up for anything else. She is so excited about everything — school, swimming, reading, music. I just love her enthusiasm and attitude about life!!

#11 OT appointment
Katie had her #11 OT appointment with the oncologist on Tuesday, February 21. Her CBC was normal! She returns in a month for a CBC with differential, liver function test, urine analysis and physical. After March 19, 2006 she will be a 1 year survivor! Go Katie go!!

To celebrate, we are going to Maggie Moo Ice Cream (Shoppes at English Village, 1460 Bethlehem Pike (Rt. 309) in North Wales, PA) on Wednesday, February 22nd. They are hosting a celebrity scoop night with 15% of individual customer bills being donated to Gilda's Club Delaware Valley.

It’s hard to believe that it has been a whole year since Katie had her last chemotherapy, and that in less than a month she will be considered a “1 year survivor”. We are so proud of her!! This is a huge milestone for anyone who has been through cancer treatment. We hope that everyone who reads this update will share in our joy and take a moment to sign Katie’s guest book.

Please continue to keep Katie in your prayers.

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Katie’s Cooking! is almost here
The printer has given us a March 6 ship date (leaving their facility in Nebraska). We are hoping to have the cookbooks by March 10. I will email everyone who ordered cookbooks as soon as we get them, and will post ship dates on our web site as the books go out. If you are picking up your order, we will arrange a pick-up date with you.

If you haven’t gotten your cookbook yet, you can purchase them through our web site or at the events listed below. The cost is $24.00 (plus shipping if applicable). For more information... click here

Katie’s Cooking! Events
Kick-off Party — Sunday, March 19, 2006
Savona Restaurant located at 100 Old Gulph Road, Gulf Mills, PA • (610) 520-1200.

The Book and the Cook – Saturday, March 25, 2006
Fort Washington Expo Center in Hall “A”, 1100 Virginia Drive, Fort Washington, PA

To help us promote our cookbook, CN8 has graciously offered their booth for us to use at The Book and the Cook on Saturday, March 25, 2006. Many, many thanks to all the folks at CN8 for their support and help with our cookbook!!

The Book and the Cook Culinary Market & Kitchen Showcase features cooking demonstrations and book signings by dozens of the world’s most popular cookbook authors as well as more than 125 exhibitors offering gourmet foods for sampling and purchase as well as displays of cookware and kitchen furnishings.

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Online Awareness Shops
We are pleased with the sales in our childhood cancer awareness shops through CafePress over the last year -- $167.87 will be donated to Gilda’s Club Delaware Valley in honor of Katie.

We've added two new shops -- “CHEMO BRAIN” with our chemo head icon and the saying: "I've got CHEMO BRAIN, what's your excuse?" and “HOPE FOR THE CURE” with a gold ribbon for childhood cancer awareness. All of our shops carry apparel, and items for home and office. Our newest items, Black T-shirts, rectangular magnets and mini-pins, are now available in most shops.

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Regarding Cancer Statistics...
On an online childhood cancer support group that I belong to, there was a recent discussion about cancer statistics. I wanted to share with you some of the comments from this discussion and some facts about childhood cancer. This is what drives John and I to do what we can to boost awareness through our web site, our email news, and with the cookbook project.

Childhood Cancer Facts:

• Each school day, 46 children are diagnosed with cancer.
• In the U.S. Approximately 12,400 children under the age of 20 will be diagnosed with some form of childhood cancer each year.
• About one in 300 children will develop cancer before the age of 20.
• Cancer remains the number one disease killer of America's children -- more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
• Although the 5 year survival rate is steadily increasing, one quarter of children will die 5 years from the time of diagnosis.
• 66% of the children who are diagnosed and treated for childhood cancers will have long-term side effects or late effects from either the cancer or, more likely, from the treatment.
• Many of these kids will be diagnosed with a secondary cancer by the time they reach age 45.

Comments from some parents:
“There are 12,400 kids diagnosed each year and that roughly 30% of them won't live, and those who do live face long-term effects or future cancers such that 'surviving' may not be quite as rosy a picture as they thought.”
--Brenda, mom of 10-yr old Cody, dx with T-cell Acute Lymphoblastic Leukemia 10/1/04, treatment on POG 9404

“Every day the medical community is learning more every day as to what our kids will encounter with survival. At diagnosis we cannot concentrate on what they tell us will be a side effect. Our priority at that point is beating the beast that just slapped us in the face.”
--Suzi, mom to Nicholaus, OT for 9 1/2 years

“Statistics can be used to point out how far we've come or how far we need to go. As for me, when someone cheerily tells me that leukemia has an 80% survival rate, I point out that means that 20 kids die out of every hundred. 80% might be a B on a math test, but it isn't good enough when we're talking about kid's lives.”
--Missy, Chair, Patient Advocacy Committee, Children's Oncology Group

“When it’s your child, statistics mean nothing — your child will either make it or they won’t. I think when most people hear a childhood cancer survival rate, they assume that means that is the percentage of kids that go on to live a full life. Survival or ‘cure’ rates only talk about how many kids will still be alive 5 years after diagnosis.”
--Patty, mom to Katie, dx with pre-B ALL, OT for 1 year

“I really wish the medical community would change their definitions of ‘cure’. Maybe for a 70-year-old newly diagnosed with cancer, [living for another] 5 years would be a cure, but certainly NOT for a child!”
--Jennifer, mom to Kevin, age 7, dx with Ewings Sarcoma 9/03, OT 9/04, dx cardiomyopathy 10/04

Let your voice be heard!
CureSearch (National Childhood Cancer Foundation and Children’s Oncology Group) has set up a quick and easy way to let the elected officials know that we need give to more attention and support to childhood cancer. To go to the CureSearch site, click here, or visit our advocacy page -- “HOW TO HELP.”

NEXT: March 31, 2006 -- OT visit #12
onco visit, cookbook kick-off party, more events