Shine Your Light for Kaydin
3/24/17 Update: Our hearts are heavy today. Kaydin passed away on 3/22/17 at 2 pm at Hasbro Children's Hospital surrounded by his loving family.
We loved Kaydin. It's amazing how a little boy can leave such a big legacy. Kaydin inspired countless people to give blood and platelets. His parents opened their lives to us so we could share their story with you...and you stepped up to the plate to make sure Kaydin had the 100+ platelet and red cell transfusions he needed during his battle with leukemia.
It's impossible to know how many lives were made better, and in many cases saved, by the donations Kaydin moved people to make. His family had 16 months of time to love Kaydin that they would not otherwise have had without you. They are forever grateful for donors.
Please light a candle for Kaydin and his family tonight. Post a picture on their KaydinStrong Facebook page to let them know you are thinking of them and that you will always remember their beautiful blue-eyed little boy who loved Mickey Mouse and saying "cheese."
We are #KaydinStrong always.
Life for a one-year-old should be easy. Eat, sleep, grow...explore the world around you. Play...be smothered with hugs and kisses. At bedtime, Kaydin's night light comes from the nurses' station. The things other babies do he does in an isolation room at Hasbro Children's Hospital, often in between biopsies and blood transfusions. One of the brightest lights that shines for him right now comes from blood and marrow donors.
Since he was five months old, Kaydin Almstrom has been battling Acute Megakaryoblastic Leukemia, an aggressive form of blood cancer. After a brief remission, he relapsed in June. He now needs a bone marrow transplant to cure him.
The cancer prevents Kaydin's marrow from making healthy blood cells. And because chemotherapy does not differentiate between the cancer cells and healthy cells, it destroys both. As a result, Kaydin's mom Kelly says, "He needs blood regularly, both platelets and red cell transfusions. He has needed them since the first day in the hospital and will until he is cured." In fact, Kaydin had four transfusions in the ICU the first night he was admitted to the hospital. Kelly lost count of how many he's had since. He has also received intravenous immunoglobulin, which helps fight infection and is made from the plasma of blood donors.
The marrow donor that could cure Kaydin has yet to be found. Doctors are looking for his perfect match and need to find one soon. At one point, Kaydin had ten preliminary matches that the transplant team were looking at. Kelly says, "Even with ten potential matches on the marrow registry, you have to hope the donor is still healthy or not pregnant. You have to hope that the person is in the younger age group of donors that will give Kaydin's body the best chance at accepting the donor's stem cells. You have to hope they can easily find the person and that they are still willing to donate."
Kelly says, "I never knew how many kids have cancer and need blood every day here in Rhode Island until Kaydin got sick." And she never knew how many marrow donors are desperately needed, especially donors with diverse cultural backgrounds. About 1 in 540 people who register to be someone's marrow match will go on to donate.
She talks about the toll an illness like this takes on parents. "One of the hardest things is the waiting. Parents of kids with cancer get what we call 'scanxiety'," explains Kelly. It is the period from the time a test is performed until you get the results, which can sometimes take a week or more. "The waiting and not knowing is excruciating."
In between the waiting, the Almstrom family's home away from home in a room at Hasbro. "My husband Kenny, Kaydin's dad, and I have spent Thanksgiving here. Christmas. Our son Nathan's 8th birthday," says Kelly. Nathan stays with Kaydin in the hospital every other weekend from Friday night to Sunday morning. Kaydin lights up when his big brother is there.
Please shine your light on Kaydin and so many others who need you. Show him you are #KaydinStrong. Give in honor of Kaydin at any RIBC blood center or blood drive by using Kaydin's sponsor code 4079. Register online to be someone's marrow match or at any center or blood drive as well. You could be the one!
Follow Kaydin's progress on Kaydin Strong, the Facebook page his family set up to keep the amazing community supporters up-to-date.