This Gap is Big

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Donna Carmical is a co-founder of Grandparents In Action. For Richard Plotkin and  I, “action” is the key word we use when it comes to describing Donna. She is relentless in her advocacy for better outcomes for  children affected by cancer. She is an expert on how the government works and she is undaunted in her efforts to bring issues of childhood cancer to light in the National Cancer Institute,  the House of Representatives and the Senate. If there is an opportunity for childhood cancer to be mentioned in a committee meeting or hearing, Donna is right there in the audience, front and center, and also working behind the scenes to effect change.             Joe Baber, Editor GIA

DeclanThe first weekend of March was cold and windy and the whole family seemed to be coming down with something. Declan was particularly cranky, out of sorts and just not himself. Stan and Sherri decided to take him to the pediatrician on Tuesday morning. A particularly astute pediatrician noticed that Declan would not look down, apparently a sign of brain swelling. He was immediately sent for an MRI and then a CAT scan which revealed a brain tumor.

On March 9, 2010 Declan underwent his first of several brain surgeries to resect a portion of the tumor and get a tissue sample. Several days later Doctors advised my son and his wife that Declan had a “rare” cancer called AT/RT, they advised that he was terminal, that there had been no research and there weren’t any standard pediatric protocols for treatment of AT/RT. Their recommendation was that we take Declan home, make him comfortable and he would be gone in a few weeks. We were horrified. A beautiful, perfect baby and they were telling us that there were no treatments, no cures, no hope.

Theyweretellingus_edited-1After consultation with several pediatric oncology groups, Declan was approved for experimental treatment with a regime of surgeries, chemotherapy and radiation. During the next 6 months after diagnosis there were many ups and downs, moments of hope followed by despair. In June 2010 after proton radiation at MD Anderson in Texas it seemed there was a miracle, all the tumors were gone. At the end of August 2010 the cancer came back with a vengeance and Declan died in the arms of his parents on August 18, 2010. I can’t believe it’s been 5 years, it seems like only yesterday.

Declan was a beautiful sweet baby — child of my son and his wife, grandchild, twin to Cole, brother to Will and Brady, nephew, cousin – he will be forever missed. He left a gap in our lives that will never be filled. We were blessed by our time with him and the memories he left during his short time here on earth.

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Donna marching at the gates of the National Cancer Institute

During Declan’s journey with cancer we learned so much – we remain astounded by the lack of funding for childhood cancer research, the apathy on the part of our government to fund research that offers the promise of pediatric treatments and protocols. We remain committed to fight in Declan’s memory and in the memory of so many children who have lost this battle, who continue to fight this battle and to those that will fight the battle with childhood cancer in the days, weeks, months, years to come. Kids are a priority in our lives, childhood cancer research should be a priority as decisions are made about research investment of our tax dollars. Join with us and tell Congress to make childhood cancer research a national priority.

Author: Donna Carmical

Editor’s Note: Donna is one of four co-founders of Grandparents In Action. It is an advocacy organization for Childhood Cancer made up of grandparents whose grandchild was affected by cancer. The organization is now two years old and has over 850 members. Here are other recent posts by other co-founders:

GIATogether_edited-1  We’re in this Together by Richard Plotkin

Normal_edited-1 “Normal” by Joe Baber

Pictured below are the original Grandparents in Action at the White House Childhood Cancer Summit. Starting at left, Joe Baber, Richard Plotkin, Donna Carmical, Tom Pilko

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This entry was posted in Cancer, Childhood Cancer, Grandchildren, Grandparents, Pediatric Cancer, Rare Disease, Uncategorized and tagged , , , , , , , , , , , . Bookmark the permalink.

6 Responses to This Gap is Big

  1. Cheryl Brooks says:

    I feel your pain. OH, how I feel your pain.

    My beautiful granddaughter was diagnosed at 26 months with acute lymphoblastic leukemia. Be “grateful,” they said — this one has a 95% survival rate. Yes, it will be a tough two-plus year protocol (three-plus had she been a boy), but she will get through this and thrive. And get through it she did. She crushed it. No one goes through 2 years without at least one chemo delay, but Kate did it. 25 months later, on September 14, 2015, she had her last chemo. Then her port was removed, she started preschool, we had her “No Mo Chemo” party, and she went on her Make-A-Wish Trip to Disney World. Life was wonderful. On December 14, 2015, she was declared “perfect” by her oncologist….on to the holidays. They were amazing and fun.

    Then she started not feeling so great. On January 11, 2016, we heard the words no one wants to hear….”relapse.” And 15 hours later she was gone. Unbelievable, right? Gone. Forever 4-1/2. She never even got a chance to fight a second time. Even though we have been told it would have been an uphill battle, we sure would have liked that opportunity.

    So yes. Our kids deserve more. Our kids deserve the BEST we have to offer — not our leftovers.

    • Team Captain says:

      Cheryl, so very sorry to hear about your granddaughter. Some people call ALL “the good cancer,” and sadly, we know there is no such thing. The other word we fear to use, because of relapse and long term side effects is “cure.” You are right, and said it so well, “Our kids deserve more. Our kids deserve the BEST we have to offer — not our leftovers.”

  2. Pingback: “Normal” | Grandparents In Action

  3. Pingback: We’re in this together | Grandparents In Action

  4. Oh Donna, your blog brought me to tears – our precious Connor looked very like Declan – he was also blond with big blue eyes and a smile that melted the hearts of anyone who met him. He had his first symptoms on Thanksgiving day 2012 at age 4 and a half months – unfortunately my daughter and son-in-law had no astute pediatrician and it took 3 long weeks to diagnose his AT/RT – he died 3 weeks later at age 6 months. There are no words to describe the pain and shock of that loss – It’s been 3 years for our family and it still feels like it happened yesterday – he was a special gift who will live in our hearts forever. Thank you for all of the work that you do so that other families will not have to go through that loss. Suzanne Brown of Virginia, (Connor’s “Gran”)

    • donna carmical says:

      Hi Virginia, so sorry about Connor, he was a sweet baby like Declan and it’s horrific to watch this happen. Hearing Doctor’s say that AT/RT was rare and there had been little to no research to provide treatments made me angry, especially when I knew there were other children in VA that had “rare” cancers. I wondered how our government could ignore the fact that thousands of children are dying from cancer each year and ignore it. Our tax dollars provide $32 billion a year to the National Institute of Health (NIH) for research, out of these funds AIDS research gets $3billion, Drug Abuse gets $1 billion, Obesity gets $1 billion, Tobacco and Alcohol research gets 1 billion and Childhood cancer research gets around $200 million if that much. This is so wrong. I am proud to be part of Grandparents in Action (GIA). I think together we can be a force to bring change, we have the time and the tenacity to get Congress to pay attention! I hope you will join with us and encourage your friends to join, there is strength in numbers! We look forward to a day when the parents of children like Declan and Connor can hear, the words — the bad news is your child has cancer, the good news is we have a cure! Those cures will come with adequate funding of childhood cancer research. Join with us to help make childhood cancer research a national priority. Thank you again for your sweet response to my blog about Declan. Take care and hope to meet you soon! Donna

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