severe aplastic anemia

Noah’s Journey – Life interrupted…

On February 17, 2019, our family was spending President’s weekend at the River in Arizona, enjoying time together with family and friends. My husband, Ryan and I noticed our oldest son, Noah “Munch” didn’t have a lot of energy and his skin coloring was pale and yellow.

His physical state was alarming, we decided to leave Arizona and drive home to California to take him to the best-known hospital. We arrived at Temecula Valley Hospital Emergency room where Noah was taken to a bed immediately to see a doctor. Blood tests were done instantly revealing that Noah only had 5 units of blood in his body. The nurses started a blood transfusion and an ambulance arrived to transport Noah to Rady Children’s Hospital in San Diego. Noah spent two days in Pediatrics ICU and received several blood transfusions. He had a bone marrow biopsy and he was diagnosed with a rare blood disease called Severe Aplastic Anemia.

Our lives went from watching our son play sports, wakeboarding at the river, and enjoy time with friends to sitting in a hospital room being told that our son may die. Throughout this process, Noah was forced to continue his 7th grade year in hospital home school and have little to no physical contact with friends and family. He’s also had to undergo numerous appointments from Murrieta to San Diego for blood work, well-care visits, and blood transfusions. Not only were the traumatic events instantaneous, but also terrifying due to the little knowledge we had of such an unfamiliar and rare disease.

Doctors educated us on his survival chances of 60% with some treatments offered (immunosuppressant therapy). However, if he had a sibling match for a bone marrow transplant, his chances would increase to 90%. We were so blessed that both of our children, Lucas, who is almost six, and Aryana, our baby girl who is almost three, are perfect matches. Lucas willingly agreed to be his donor in exchange for “a weekend of playing Xbox and snicker bars!”

Soon Noah will begin aggressive chemotherapy to kill off the remaining bone marrow that is attacking his immune system in preparation for his bone marrow (autologous) transplant from his brother, Lucas. As a donor, Lucas will be admitted for 2-3 days for the transplant. Aside from minimal aches and pains, Lucas will be able to return to his daily routine in no time. As for Noah, post-transplant, he will be isolated in the hematology-oncology (HEMOC) transplant unit for 6 weeks because of his compromised immune system. It will take a few months for Lucas’s cells to take over 100% of Noah’s body. If all goes well, Noah will have a normal life which is all we can ask for him.

To donate to HOPE 4 NOAH in his honor, visit his Campaign Page 

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