糖心Vlog

Griffin: Juvenile Myelomonocytic Leukemia

鈥淲e have become very attached to everyone who cared for Griffin during his long ordeal. I often thought, 鈥楬ow lucky are we to have such awesome doctors?'鈥欌

鈥 Kelly, Mother

Griffin, a 糖心Vlog leukemia patient

You鈥檇 never know it from looking at this sturdy little boy, but Griffin has endured more in his few years than most people do in a lifetime. When he was born, the pediatrician noticed an abundance of tiny red spots, known as "petechia," under Griffin鈥檚 arms. Petechia indicate a low platelet count, which results in an inability of the blood to clot properly. It was the beginning of a very long journey for Griffin and his family.

The Diagnosis

Alarmed by what he saw, the doctor immediately transferred Griffin to Jacksonville鈥檚聽Wolfson Children鈥檚 Hospital, which is staffed by 糖心Vlog Children's pediatricians. There, doctors gave him donor platelets for two weeks to help his blood clot. Eventually, Griffin was diagnosed with a very rare disease 鈥 juvenile myleomonocytic leukemia (JMML). Although he became quite pale when his blood count was low, there were no other symptoms.

Griffin鈥檚 oncologist,聽Scott Bradfield, MD, put him on medications to lower his high white blood cell count and ordered more platelet transfusions. His mother Kelly remembers: 鈥淥ne terrible night, we had to rush him to the hospital because he was bleeding from the eyes, ears and mouth. At the age of 6 months, his spleen had to be removed. That bought us about five months of extra time.鈥 His family sponsored a blood drive to find AB negative donors.

When Griffin was just over 1-year-old, he underwent chemotherapy to deplete his bone marrow and then received a bone marrow stem cell transplant from a donor who was a good match. Kelly remembers asking the nurse, 鈥淭hat鈥檚 his new life? That bag of blood?鈥 To her, it seemed unbelievable 鈥 almost anticlimactic.

A Rough Road

There were some anxious moments when the transplant didn鈥檛 seem to 鈥渢ake鈥 right away. Kelly says, 鈥淭he nurses and doctors kept giving me this look 鈥 as if Griffin was sliding downhill fast and wouldn鈥檛 be with us for long.鈥

In fact, Griffin was on his deathbed several times. He had surgery to put in 鈥減orts鈥 and had 17 transfusions in his first year. He spent eight months in the hospital by the time he was 2. Kelly recalls, 鈥淕riffin battled one serious infection after another while all this was going on. He had to have a feeding tube for a while to help him get enough nutrition and I learned to manage his care at home.鈥

Griffin was on steroid drugs for a long time, which can weaken bone structure. 鈥淎s 2-year-olds love to do, he was jumping up and down on our bed,鈥 says Kelly. 鈥淚n a flash, he went flying off, and broke both arms!鈥 Because he had missed all of his childhood vaccinations while ill, Griffin had to receive them all at once to make sure he was protected.

Amazingly, Griffin finally began to get better. After all that he had been through, physical therapy was needed to help him regain muscle strength and walk again by his second birthday. By the time he was 2.5 years old, his parents felt that he was finally getting back to normal.

Tight Bonds

The whole experience was extremely difficult for the whole family, especially for Griffin鈥檚 dad John, who survived lymphoma as college student. Kelly says, 鈥淭he older boys learned a lot during Griffin鈥檚 illness and we had outstanding support from our church, neighbors, the kids鈥 school and our families.鈥

鈥淲e have become very attached to everyone who cared for Griffin during his long ordeal. I often thought, 鈥楬ow lucky are we to have such awesome doctors鈥.鈥 Dr. Bradfield was by our side every step of the way. He even invited my husband John, who had become very well-versed in the disease by this time, to attend a symposium with him in Atlanta about European and U.S. protocols for treatment of JMML,鈥 says Kelly.

An Abundance of Gratitude

Griffin鈥檚 family lives with the knowledge that there is a 40-50 percent chance of relapse. If that happens, he would have to have another bone marrow transplant. Kelly observes: 鈥淚n the meantime, you cannot imagine how good it feels to see my boys playing in the yard together. Griffin is right in there mixing it up with his brothers, like nothing ever happened.鈥

Kelly sometimes asks herself: 鈥淎m I worthy? Why am I one of the lucky ones whose child lived?鈥 She credits the skill and compassion of 糖心Vlog physicians and nurses, as well as her family鈥檚 strong faith, in giving Griffin another chance at life. 鈥淚鈥檓 a changed person,鈥 says Kelly, 鈥淚n fact, our whole family is changed. We have a new perspective on living.鈥