On Friday October 2, 2009, just days after his second birthday, Colin was diagnosed with childhood leukemia (Acute Lymphoblastic Leukemia, "ALL"). Colin's leukemia subtype is called precursor or early pre-B. This site is designed to keep family and friends informed of Colin's progress so please come back often.
Today I went to the clinic with Colin and Aunt Heather for his blood check. I was able to come along at Colin’s request! Colin introduced me to all of the nurses and we worked together to complete a difficult puzzle. I had a really good time at the clinic meeting everyone and seeing how friendly everyone is and how good they are with each child. I was also able to see his favorite part, reading along with Charlotte, one of the Child Life Specialists, and reading a story that Charlotte put together about his journey with cancer since diagnosis. Colin’s blood counts may have been on the lower side but he has the green light to have a great day tomorrow at my graduation party! I am looking forward to introducing him to the slip n slide and possibly a couple fireworks later on at night!
Notes from Mommy and Daddy: ANC 900, Hemoglobin 8.8. Ret. 6.7. Hemoglobin still on the low end back next week for month chemo and more blood tests.
Colin learning how to give Gabe the Chemo Duck his medicine:
Today's visit to clinic started off with a bang. Colin and Maddie were confused when it was darker at 8am then it was when they went to bed the night before! Papa was there for the clinic visit today, keeping Colin occupied and meeting the nurses. The good news is that no transfusion was necessary today. Although Colin's counts dipped a bit more; his hemoglobin registered at 8.6, we are hopeful that his body will rebound and will not require a transfusion. Back on Friday for blood check. Thanks for the prayers and positive thoughts.....Keep them coming!
Favor: we entered the kids into a photo contest to win a themed party and photo
shoot, with their birthday's just around the corner we thought they would love
to celebrate in style. We were in the lead for the first few weeks of the
contest but have fallen a bit behind. Can you please take a moment to vote for
us? You can vote once per day until July 1st. It’s VERY simple. Click on the
below link for Laura Dee Photography, “LIKE” their facebook page, click on the
photo contest button, scroll down and vote for the Colin & Maddie's photo (3
clicks, 3 seconds)!! http://www.facebook.com/LauraDeePhotography?v=app_197602066931325
Ups: We spent a week at Camp Sunshine in Maine and had a blast catching up with old friends and making new friends. The kids were very busy with their activities each day and even made a few new friends. They are already asking when we are going back! We continued our vacation through the weekend, heading down to Colin and Maddie's cousins birthday party on Saturday and to the carnival at Lighthouse Point today. Sunday ended with both kids sound asleep by 7:30 which is unheard of!
Downs: The Friday before we left for camp Colin was very pale and his blood draw results indicated that his hemoglobin was down, registering at 8.9. A transfusion is required at 8.0. Although his energy remains good, his color has not improved and we will be heading to clinic in the morning (Monday) for a blood draw to check on his counts. We also learned that someone close to us relapsed earlier this week so we can certainly use some extra prayers and positive thoughts.
Favor: we entered the kids into a photo contest to win a themed party and photo shoot, with their birthday's just around the corner we thought they would love to celebrate in style. We were in the lead for the first few weeks of the contest but have fallen a bit behind. Can you please take a moment to vote for us? You can vote once per day until July 1st. It’s VERY simple. Click on the below link for Laura Dee Photography, “LIKE” their facebook page, click on the photo contest button, scroll down and vote for the Colin & Maddie's photo (3 clicks, 3 seconds)!! http://www.facebook.com/LauraDeePhotography?v=app_197602066931325
We are happy to report Colin is doing well and over the past month his routine blood checks have all been in range. He had chemotherapy and a spinal tap today. His counts today came back a little on the high side with his ANC at 2700. We will keep meds as is for now but may again increase if they remain high at next visit.
This morning we kept to his normal routine which is no food or drinks, weight/height/temp/blood pressure check, access of port to start his IV chemo, exam by the doctor and then emla on his back (this numbs the procedure area). We then wait 20-30 for the numbing so we played at the activity table and today we had the pleasure of making sand art with the Sunshine Kids. Once ready, Colin received part of his sleepy medicine at the activity table and we carried him into the procedure room. Once in there he received more sleepy medicine and pain meds. The Doctor, Nurse, Student Nurse, Child Life Specialist and Mommy and Daddy waited patiently while Colin is calm on the table and begins to fall asleep. He is put in the featile position and held very tight by the nurse while the doctor performs the procedure. Colin clenches our hand and lets out a little cry during the injection and within minutes he is asking for his juice and gold fish. He lays comfortable flat for 30 minutes so he doesn't get a headache and as soon as he finds where Crazy Jill (Colin's new nickname for his favorite nurse) put his shoes, he is off to the activity table and doing racing laps with daddy around the outdoor healing garden. It is truly amazing how quickly these kids can rebound and be off playing as if nothing happened. Tonight before bed Colin was concerned about his band aid, you see at the beginning of the day they use a large band aide on his back for the numbing cream but when done they use a small one. He wanted to know where his large band was and if the doctor took it off while he was sleeping. He also mentioned that today was a bad day because he wasn't able to eat or drink and tomorrow will be a good day.
We tell you this because today when we walked into the clinic we were floored by the amount of new children there. There was not one green chair or activity table chair available. It brings tears knowing the fight these children have ahead of them and all they will endure. With that said, if anyone would like to witness these brave children please let us know and perhaps we can arrange for you to come to one of our visits.
We also apologize for the lack of recent posts. It's taken a long time to post an update because a part of our heart has been stolen by cancer. A family we became close to said good bye to their three year old daughter four weeks ago. No words can express ... just that no child should have to face this disease and no parent should have to say goodbye to their child. We will continue to raise awareness around childhood cancer in memory of sweet Nayelis and all the children fighting.
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.
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."
Colin’s Crew was originally formed to provide financial and emotional support to the Westbrook family. As Colin continues to do well on treatment, “Colin’s Crew” is planning fundraisers to help families in the same situation as the Westbrook’s. Visit us online at Colins-Crew.org
Hope
"Hope is the belief in a better tomorrow. Hope sustains the will to live and gives the strength to endure each trial. Hope is not a way around, it is a way through. The majority of children conquer childhood leukemia and live long and happy lives. There is a reason for hope." Nancy Keene
