Thursday, May 3, 2012

Counts are Good & Record Journal

Last week Colin had his routine blood check and his counts are in range coming in at 1200 (ANC). Three weeks ago one of his Oral chemo drugs (Methotrexate) was increased to 5.5 pills and we learned very quickly when crushing and diluting that you need to do no more than two pills at a time or it comes spitting back out at you. Over the past couple of weeks Colin has made some great strides ... he was spotted a couple of times talking in the classroom or on the play ground. He's starting to interact with a couple of his friends when we drop him off and recently followed Maddie with a couple of the girls to play before school. Colin is usually attached to Mommy's hip and has to be pride away so it doesn't matter that it took almost the whole school year to get to this place ... we are so proud of him! In addition, at our last clinic visit Mommy stepped away for a few minutes to visit with a friend and upon return Mommy was able to admire Colin from afar while he was interacting, giggling and being his fun self with the volunteers, nurses, clowns and magician. Tears of joy as we begin to see him break through!!

Ms. Maddison continues to be her princess self wearing her party shoes and tutu's nearly every day. She has learned how to throw a full out temper tantrum and sweet talk both Mommy and
Daddy !! She is completely potty trained and will attend a short town camp this summer with Colin.

Lastly, in our last post we mentioned how honored we were about speaking with The Record Journal. Below are the links to the two articles in case you missed them.

Colin’s Crew helps members of Wallingford boy’s ‘cancer family’
WALLINGFORD — When Mike Westbrook heard that his son, Colin, had leukemia, he didn’t believe it.

“I thought it was wrong; I thought the tests were wrong,” he said.

But Colin, who had recently celebrated his second birthday, was sent to the hospital, where he spent the next 12 days and where his family began a journey that has continued for more than two years.

Colin has acute lymphoblastic leukemia, a treatable cancer of the white blood cells. But when Mike and Heather Westbrook learned of his condition on Oct. 2, 2009, they were prepared for the worst.

“To get that phone call ... you know about leukemia, but you don’t really know,” Heather Westbrook said. “You don’t know what’s in store.”

The news of the diagnosis came at a time of celebration for the Wallingford family: Heather had given birth to a daughter, Maddison, just two months earlier.

“We were on a high from having number two, and then we get this news,” Heather said.

Colin is on a three-year treatment program, and will be considered “cured” if his cancer remains in remission five years after his initial diagnosis. But relapses are possible, and while Colin is healthy and active now, his family is still wary.

“We’re cautiously optimistic,” said Mike Westbrook.

Every two weeks, Colin goes to the hospital and once a month he receives chemotherapy through a spinal tap. When he’s home, he takes steroids and chemotherapy pills.

The family started a blog shortly after Colin’s diagnosis, originally as a place to provide updates for family and friends.

“We were getting so many emails, calls and texts that, with a website, everyone was updated at the same time,” Heather said. “But it actually became a little bit therapeutic.”

Mike said the blog will also serve as a teaching tool for Colin. The family hopes to be able to explain his condition to him when he is older. Colin, 4, and Maddison, 2, are too young to understand the cancer and Colin’s treatments.

“They just call it his boo-boo,” Heather said. “It’s hard to comprehend, but someday they can read all this.”

The blog has grown, and now the Westbrooks see it as a place to offer advice and support for those who are faced with a cancer diagnosis for their child. Heather Westbrook said they have welcomed the new people they meet at the pediatric oncology unit at Yale-New Haven Children’s Hospital into their “cancer family.”

“We want to talk, we want to share our experience,” Mike said. “We want to give them some hope, some education.”

In a recent blog post, Heather talks about how her outlook has changed in the last two years.

“Before that crisp fall day in 2009, we were aware of cancer, and like many people, had endured seeing a relative or friend battling a cancer diagnosis,” she said. “However, we had no perspective on childhood cancer. ... As I looked around the clinic yesterday, I realized we are no longer the innocent and naive family we were just two short years ago. We do not see childhood cancer the same. We have become stronger, thanks to our son. We have become better parents, thanks to our son. And most importantly, we enjoy, and treasure life more thanks to lessons learned from our brave four year old little boy.”

The family received an outpouring of support following Colin’s diagnosis, and has become close to other families at Yale-New Haven. After they came to grips with Colin’s condition, they wanted to do something to give back. In the spring of 2010, Colin’s Crew was born.

Colin’s Crew started as a fundraising organization, but it now delivers meals donated by local restaurants to the oncology ward at Yale on holidays.

“Some of these families are up there by themselves,” Mike said. “To have a nice dinner for the holidays, it’s helpful.”

On Easter, Colin’s Crew delivered meals and hand-painted eggs to families at the hospital. One mother sent Heather an email thanking her for the gift.

“We received your care package yesterday — amazing, caring, classy — it was wonderful,” she wrote. “I was extremely touched as I was alone with my son on Easter. Thank you for brightening up our day and doing what you do. It was impressive.”

Colin is in preschool at Cook Hill School, and for Valentine’s Day the whole school made valentines. Kate Xeller, a family friend of the Westbrooks, helped deliver the cards to the hospital.

“We got so many thank-you cards back,” she said. “It was a really great feeling. I give a lot of credit to Heather and Mike for their poise to give back like this during what is a scary time for them.”

Colin’s Crew is in the process of registering as a 501(c)(3) nonprofit. It’s an effort Heather wants to see continue.

“We’re excited to see where it goes. We enjoy helping other people,” she said.

For more information on Colin’s Crew, contact Heather Westbrook at or (203) 494-7838. Read the family’s blog at and search for “Colin’s Crew” on Facebook.
(203) 317-2225

When a child has cancer - Barbara Parent
A Page One story in the Record-Journal on April 16, "Colin's Crew helps members of 4-year-old's 'cancer family'," begins with Mike and Heather Westbrook, of Wallingford, being told that their son, Colin, who had just turned 2, has leukemia.

"To get that phone call … you know about leukemia, but you don't really know," Colin's mother, Heather, told Record-Journal writer Russell Blair.
"You don't know what's in store."

Entering the realm of cancer is frightening at best. Entering it clutching the hand of a small child should not be part of the scheme of things.

But it is.

Childhood cancer is a 3year-old telling Elmo he'll be back to play as soon as he gets his treatment. Childhood cancer is a first-grader moving into the medical jargon of bone marrow, chemotherapy and radiation, saline flushes and spinal taps.

Childhood cancer is babies with IVs in their tiny feet.

Childhood cancer is a 10year-old soccer player squeezing in his time on the field between treatments.

Childhood cancer is a 14year-old playing competitive basketball wearing a wig.

Childhood cancer is a teenage girl losing a leg to bone cancer.

Childhood cancer is the emotional relief that comes with remission. And, childhood cancer is the lurking fear of a relapse.

One of the most devastating aspects of childhood cancer is the helplessness a parent feels over the disease and that they can no longer keep their child out of harm's way.

Yet childhood cancer can be met head on and fortified with support from nurses and technicians to help ease the walk and doctors to have faith in.

And strength can come from childhood cancer.

Strength that comes from within ourselves by reaching out to others.

In his story, Blair reported on "Colin's Crew," which began as a fundraising organization in early 2010 and which Mike and Heather Westbrook have expanded into providing help and support to other parents they have met at the pediatric oncology unit at Yale-New Haven Children's Hospital, where Colin is on a three-year treatment program. The Westbrooks also write a blog that offers advice and support for parents facing a cancer diagnosis.

"We want to talk, we want to share our experience," Mike said in Blair's story.

"We want to give them some hope, some education."

In a 1988 Record-Journal story on the Children's Cancer Program, located at the time at the John Dempsey Hospital at the University of Connecticut Health Center in Farmington, and now at Connecticut Children's Medical Center in Hartford, social worker Joan Rolsky, was asked if there was a single quality that stood out in the most memorable families she had worked with for the 18 years she was with the program: "I don't know if that's an answerable question," Rolsky said. "I don't know how you define what it is they have.

Courage is such an easy word to use and we don't all deal with things with courage. It is more," she added, "an enormous quality of caring for each other, that marks the families who handle childhood cancer the best. I don't think the victors are the only ones who survive."

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