Calvin's fight against Aplastic Anemia

About Calvin

Calvin is an amazing little boy who was diagnosed with Severe Aplastic Anemia just after Easter 2014. His mom noticed that he had some strange bruising during their move back to Texas, and scheduled a pediatrician appointment to have him checked out. They drew blood on April 21st, and found that his platelets were 4,000, and his ANC (the cells that fight disease) were less than 20.
His mom raced to get him to the hospital so that we could find out what was wrong.

Diagnosis

We were told that Calvin, our larger than life, amazing little boy had Severe Aplastic Anemia on April 25th, and immediately transferred to Texas Children's Hospital's Hemetology department. Calvin thought the ambulance ride was pretty cool, and mom got car sick.
This is a huge learning experience for all of us. Calvin is currently going through ATG, which is a combination of immune suppression therapy and chemo drugs. If this works, it will put Calvin into remission, as the only real cure for SAA is a bone marrow transplant.
Calvin doesn't have a perfect match, and his little brother, Henry, was born in June, making him too small to donate to big brother, even if they are a match.

So...you're probably wondering what Severe Aplastic Anemia means....

Severe Aplastic anemia is an acquired autoimmune disease, which occurs when the immune system mistakenly attacks and destroys healthy body tissue, in this case, the bone marrow. The bone marrow stops making enough red blood cells, white blood cells and platelets for the body. People with severe aplastic anemia are at risk for life-threatening infections or bleeding. A cold could quite literally hospitalize Calvin. SAA a very rare disease. Approximately 1 in 1 million people in the United States get Aplastic Anemia each year, which is probably why you've never heard of it before now.
They don't know what caused Calvin to acquire SAA-his condition is considered idiopathic, which is doctor speak for "we don't know."

Calvin's Treatment

Calvin received his first round of (horse) ATG on May 20th, just shy of 30 days after he was originally admitted to the hospital. His doctors are guardedly optimistic, as his white cells/ANC have improved to the low side of a "normal" range. Calvin is receiving supportive therapy, which includes Cyclosporine (a chemo drug to suppress the immune system), hemoglobin (red cell) infusions, and platelet infusions.
If this round of ATG works, Calvin will be in remission (remember that ATG is not a cure)-which means that he will always have SAA. He will need weekly, then monthly blood draws, as well as bone marrow biopsies every 3-6 months to make sure that his cellularity is stable, and his not relapsing.
If this round of ATG does not work, there is the option to do a second round of (rabbit) ATG or proceed with a bone marrow transplant, which would involve intensive chemotherapy, and a 6 week hospital stay, during which he would need to be completely isolated as he would have no immunity whatsoever.
This is a LONG, HARD fight. Clinic days last anywhere from 4 hours (if he doesn't need an infusion) to 10-12 hours (if he needs platelets or hemoglobin...or both). Calvin has just recently (in the last few weeks) been able to go longer (7-10 days) between infusions, and he is not longer considered "neutropenic"-but we still have to watch him closely for signs of a fever (100.4) or illness, as it could mean a hospitalization for him due to his disease. Most kids with SAA require treatment for at least 6 to 12 months with ATG before a transplant is considered. That means that Calvin's got at least another year of fighting to do. Let's help his family out with their astronomical medical bills.

Team Calvin FB support page

 

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Organizer

Elen Hayhurst 
Organizer
Dickinson, TX
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