****UPDATE: Hi everyone! We wanted to give an update on Reefs CML journey. Since his visit to the pediatric CML specialist at Columbia we have been battling multiple side effects from his daily chemotherapy. Close communication between his local oncologist and his CML specialist produced a “wait and see” approach as he has hit his 3, 6 and 9 month markers on his bloodwork. Unfortunately his side effects continued to progress in severity and multiply impeding his quality of life. After many conversations, additional tests and research, we have arrived at the decision to pursue immune therapy. Immune therapy has long been utilized in the treatment of advance stages of CML particularly when stem cell transplants are needed or side effects are severe enough to constitute a failure of first line therapy. As very limited treatment options are available to pediatric patients, immune therapy can only be accessed through a specialized immune oncologist who is willing to take on a pediatric case. Luckily, we were able to find a doctor with these qualifications who is willing to tailor protocols and treat Reef. This has given us a renewed sense of hope that Reef will be able to overcome the side effects of his current treatment while maintaining control of his cancer and regain his quality of life. Unfortunately, the treatment is not covered by insurance and comes with a high initial cost as well as ongoing maintenance treatments. Each round of immune therapy consists of injections given daily for 14 days ending in a specialized immune surveillance blood panel to monitor his progress and fine tune the next round of treatment. The cost of each round of injections is $40,000 in addition to the specialized blood panel which is $6500 each round. While it cannot be predicted with 100% certainty exactly how many rounds he will need to restore his immune function and bring him to maintainance, his doctor estimates approximately 3 rounds based on his 20 years of experience treating leukemia using this method. As we cannot begin this therapy without fully committing to the entire initial course of treatment which totals $150,000, we are humbly calling on Reefs Tribe to help us achieve this goal as quickly as possible. As always, we appreciate any help towards his goal if you are able, words of encouragement for Reef while we embark on this new chapter in his care and sharing his story to reach as many members of Reefs tribe as possible. Thank you all from the bottom of our hearts for your continued support, it truly means the world to us

The Beginning of Reefs Story: 

On March 17th 2025 our world stood still as we listened to the doctor utter every parent’s greatest fear…”your son’s tests are consistent with a diagnosis of cancer.” As we came to find out our 8 year old son Reef, had a white blood cell count of 94,000 which is 7 times the high limit of normal. Additionally his red blood cell counts were low and his platelets were registering over 1,200,000, nearly 3 times higher than the highest they ever should be. The proceeding hours blurred into days filled with tears, a hospitalized child and seemingly endless medical procedures that culminated with a diagnosis of Chronic Myeloid Leukemia. As a mother I was crushed, but I knew I had to learn as much about his diagnosis as possible to provide him with the best opportunities at living a long, full life. As I have come to know, Chronic Myeloid Leukemia or CML is a very rare cancer of the blood and bone marrow affecting about 1 in 100,000 people per year with the average age of diagnosis being 65 years old. Of that number only 2% of all cases are diagnosed in children under 18 years old. Due to the rarity of CML and the marginal pediatric occurrence, research and published data is limited. At present time only 4 medications have been approved for the treatment of CML in children, all gaining approval in the last 20 years. Little is known about the long term effects of these medications on children yet with CML being incurable, their daily use is the best and sometimes only chance diagnosed children have at survival. While all of this information came with the necessity for unforeseen adjustments, we remain hopeful and committed to creating rainbows in the storm. I’m sure every parent is familiar with the phrase “it takes a village” and the accuracy of that adage has never been as clear until now. In an effort to provide Reef with every opportunity available for managing his care and maximizing his health and comfort, I have created this go fund me as a part of his Caring Bridge profile. Currently, the anticipated costs and plan for treatment are uncertain but do include a trip to see one of the few pediatric CML specialists worldwide. While planning this visit is only a starting point, the choice was made to provide Reef access to a clinical trial of a medication that otherwise would not be available for his age group. The goal on this page is reflective of the costs of that travel and consult for our developing plan. We will use his Caring Bridge profile to post periodic updates of his journey where family, friends and the organizations interested in supporting him can contribute or simply follow along. Please know these are uncertain times and while we are grateful for any generosity you are able to contribute, the only requirement to participate in Reefs fight against CML is love ❤️