November 15, 2005 -- OT visit #8
another normal CBC, chronic pain, new orthodics, Katie in article in Bucks County newspaper, Isabel, about donating blood
Katie is 9 months OT and an 8 month survivor!!!
Oncology appointment
Katie had her #8 OT appointment for a CBC on Tuesday, November 15th. All of her blood counts were in normal ranges -- always a relief when I get this news. I've been a bit concerned with Katie's increased fatigue, but its probably from being at school for 7 hours a day, 5 days a week. She's also been taking swimming and ballet classes after school, which I'm sure are adding to the fatigue as well.
Katie is still complaining of pain in her back, hips and legs. The pain comes and goes at various times of the day and night. I haven't been able to connect the pain with any particular activity yet. I thought going off treatment would have made a difference in the intensity of her pain, but it hasn't. There was an article in the recent Candlelighters Childhood Cancer Foundation’s newsletter about chronic pain in childhood cancer survivors. I’ll have to re-read the article and consult with Katie's oncologist at her December visit, when she will have a CBC, urinalysis, and a physical.
Physical Therapy
Katie has been going to PT once a week over the past month. She has new permanent orthodics that she wears in her shoes (there is no connection between the orthodics and her pain). Per Katie’s request, the orthodics were made with pretty pink and purple flowers and a pink strap (very girly-girl!!). The orthodics help relieve the fatigue in Katie’s legs caused by the vincristine (chemo) that weakened her muscles while she was on treatment. She loves to wear them! I’ve noticed an improvement in her gait — no more feet slapping at the end of the day. Katie was given exercises to strengthen her ankle muscles and legs. She does these exercises at home several days a week. She will continue to wear her orthodics until she out grows them in about 8 months or so. Katie goes for her final PT appointment on December 2nd.
Katie in article about Gilda’s Club Delaware Valley
Support, sanctuary and some laughter, too
By LEAH ZERBE, The Intelligencer, November 13, 2005
The little ones showed up, assembled beautiful Thanksgiving crafts and ate. But most importantly, they laughed.
With faces full of determination, a group of children affected by cancer strung macaroni and beads into colorful necklaces Saturday and decorated paper bag Pilgrim outfits before sitting down to a Thanksgiving dinner at Gilda's Club in Warminster.
Gilda's Club Delaware Valley is a sanctuary for anyone affected by cancer. The nonprofit organization opens its doors to people who have loved ones dealing with the disease and to adults, teens and children who have cancer. In addition to dinners and breakfasts, the club offers everything from Pilates, yoga and wellness classes to knitting, lectures and networking sessions. All events focus on offering emotional and social support, according to program director and cancer survivor Kelly Harris.
"They're the experts in their own experiences," Harris said. "They're here to share and to have fun."
The organization was named after "Saturday Night Live" comedian Gilda Radner, who lost her battle with ovarian cancer in 1989. Her husband, actor Gene Wilder, helped open the first Gilda's Club in the mid-'90s. Noogieland, named after Radner's popular noogie act on SNL, is a separate building at Gilda's Club that focuses solely on the children. To date, there are 19 Gilda's Clubs in North America and seven more on the way.
Katie Harr, a 5-year-old Montgomeryville kindergartner, said her favorite part of Noogieland is "making crafts and making friends." Her mother said she's also partial to the cooking classes the organization offers. Katie was diagnosed with acute lymphoblastic leukemia (ALL) when she was 2 years old. But her mother, Patty, has watched Katie flourish and talk about cancer with other children at Gilda's Club over the years.
"Cancer isn't the focus point here," Patty Harr said. "But she knows when another child has cancer; there's a connection, and it's good to be able to talk about it without doctors and nurses around."
Seven-year-old Kaitlin Warner of Yardley led the crowd into the spacious dining room after craft time and sat at the head of the table for dinner. She scooted around in her seat while volunteers carried the turkey, sides and macaroni and cheese - a surprise hit - to the table.
She fidgeted, bounced up and ran to the dessert table to make an announcement. "See these cookies?" asked a proud, grinning Kaitlin. "My dad made them. They're chocolate chip."
Her father, Rodney, is a cancer survivor.
Link to the article on the web at: <http://www.phillyburbs.com/pb-dyn/news/113-11132005-569471.html>
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Isabel
Isabel’s web site hasn't been updated since last week. She had acupressure and reiki session that she enjoyed, along with going to see a movie. She’s been getting a lot blood transfusions, and is now getting three platelet transfusions a week. Her mom writes: “Although things seem to be hard for us, we are trying to be optimistic and mostly we are relying on our faith. That's all we can do now.”
Please visit Isabel’s web site and leave her and her family a message. They need to know that we are all here for them and are praying for Isabel’s healing. <http://www.caringbridge.org> VISIT: isabelturse
Donating blood and platelets saves lives!
Blood is needed for emergencies and for people who have cancer, blood disorders, sickle cell, anemia and other illnesses. Some people need regular blood and platelet transfusions to live. For more, you can link to the American Red Cross at <http://www.givelife.org/>
We remain thankful for each and every day, and for the ever present support you have all shown for Katie, our family and KATIE’S WISH. Please continue your prayers for Katie and all children who battle cancer.
Have a wonderful Thanksgiving!!
Many hugs,
Patty
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mom to Katie (5) dx 12/24/02 pre-B ALL, CCG1991, OT 2/19/05 and an 8 month survivor!!!, and Kyle (27 months). <http://www.katieswish.com>
KATIE'S WISH is a non-profit organization dedicated to helping raise awareness of childhood cancer, giving hope for families who have a child living with cancer, and raising funds for charities that help families affected by cancer.
Holiday Gift Giving to Benefit Kids with Cancer
KATIE’S COOKING! a cookbook celebrating life after childhood cancer
KATIE'S COOKING! features more than 780 favorite recipes from Celebrity Chefs, TV Personalities, Cookbook Authors, Restaurants, Nightspots, Magazines, Food Companies, and Culinary Schools, plus many of Katie's family and friends!! Proceeds from the sale of these cookbooks will go to The Children's Hospital of Philadelphia, Gilda's Club Delaware Valley and Kisses for Kyle Foundation.
A great holiday gift!!
Along with your payment, just let us know who it is for, where to send it, and who it is from. We'll mail the personalized gift certificates in time for Christmas! Must receive orders by December 15th. The books will be available to ship or pick-up in January. The pre-paid price of $18 is only good through the end of the year!!! click here for how to order.
2006 COURAGEOUS KIDS CALENDAR
The 2006 Courageous Kids Calendar can now be purchased from The Children’s Hospital of Philadelphia’s Division of Oncology. The calendar is full color and contains photos, quotes beautiful artwork created by children with cancer during their visits for treatment at Children’s Hospital. Katie’s friend, Isabel is the featured artist for February!!
For more information, to view each of the calendar pages and to order through The Children's Hospital of Philadelphia (CHOP) web site, please visit <http://www.chop.edu/consumer/jsp/division/generic.jsp?id=76639>. Purchased through CHOP, the calendar costs $15 which includes shipping.
Order through KATIE’S WISH and save $5!
Available for pick-up through KATIE’S WISH, the calendar cost is $10 and all proceeds benefit The Children’s Hospital of Philadelphia’s Division of Oncology. If you are interested in getting the calendars for $10, please make your check payable to: The Children’s Hospital of Philadelphia and send your payment with your contact information (home address, email address and phone number) to: Katie's Wish, PO Box 44, Montgomeryville, PA 18936-0044.
Kisses for Kyle Lottery Drawing
Lottery ticket will be available starting this Saturday. The drawing will be held on December 18th.
Grand prize is $500.00, 2nd prize is $250.00, 3rd prize is $100.00
Tickets are $2.00 each or 3 for $5.00. To purchase tickets, please contact Sharon Snyder at 215-657-2098 or kisses4kyle@comcast.net
Rose Bank Winery purchases to benefit Gilda's Club
With your coupon, Rose Bank Winery will donate 20% of all your wine purchases to Gilda's Club Delaware Valley during the entire month of November. Please contact Gilda's Club at 215-441-3290 for a coupon. You must have coupon with you at the time of your purchase!! Rose Bank Winery is located at 258 Durham Road in Newtown, PA