May 29 was 5-year-old Ryan Norgate’s “re-birthday.”
It wasn’t a typical young boy’s birthday celebration with cake and games and friends. It was late at night and his gift arrived in a red Igloo cooler, delivered by a volunteer who had just stepped off a flight, given by an anonymous donor.
Norgate, who calls Black Diamond home but is currently living with his mom, Patrice, at Ronald McDonald House in Seattle, was diagnosed with Aplastic Anemia last year, a disease that effects only two in a million. May 29 was his “day zero,” the day he received a bone marrow transplant that is his only option for a cure.
“The reason I want to tell his story is this is a very negative experience and I basically don’t want to be victimized, I don’t want us to be victimized by this,” Patrice said during a few brief hours in Black Diamond on day 33. “I want it to be something positive and by bringing exposure to the disease and the bone marrow transplant process. I want to be able to share that with him someday, and maybe that helps save someone’s life.”
The journey for Ryan and his family began in June 2013. Patrice noticed that Ryan was bruising easily but she just figured she had a rambunctious son who loved to play outside.
Ryan developed a cold right before the family was due to go out of town on a short vacation so she took him by the doctor’s office to be on the safe side. She mentioned the bruising offhand, which led to a finger prick for Ryan.
“They ran it through a little machine they had there and they said, ‘We think our machine might be broken,’” Patrice said.
So she made one more stop, at MultiCare in Covington, where they did another blood draw after which she took Ryan home.
Patrice and her husband Brad had put Ryan to bed when their phones started to ring. It was 8:11 p.m.
“I apparently had missed some calls on my phone, my husband’s phone was ringing, our house phone was ringing, and it was one of the doctor’s at MultiCare calling to ask us to take him to the emergency room right away,” Patrice said. “I asked what was going on and was told that his blood counts didn’t look right. And I said, ‘well what do you mean,’ and she said, ‘well as an example a normal platelet count for a child his age should be about 250,000-500,000’ and Ryan’s platelet count was 8,000.”
When Patrice asked what that meant, there was a long pause on the other end of the phone.
“I think that she didn’t want to say anything but she said, ‘that means there’s something wrong with his bone marrow,” Patrice said.
She got off the phone and quickly packed for a few days away and they drove to Mary Bridge Children’s Hospital in Tacoma.
“We could tell right away they felt it was something serious because we didn’t have to wait in the waiting room like you normally would for a trip to the ER,” Patrice said. “We were back there immediately and there were doctors immediately in the room.”
The diagnosis came back as Aplastic Anemia, which is, essentially, bone marrow failure.
“We were admitted that night because he needed blood transfusions right away,” Patrice said.
That initial hospital stay lasted three days. By the end of 2013 Ryan would have 43 outpatient clinic appointments, 36 blood transfusions, a second inpatient hospitalization, one surgery, two bone marrow biopsies, four days of chemotherapy, and there would be a search for a bone marrow transplant conducted on his behalf.
Patrice explained that with the disease her son has, there are only two treatment protocols available. The first is to undergo chemotherapy in an attempt to reboot the immune system, and the second is a bone marrow transplant.
Ryan’s treatment went the chemotherapy route first as he didn’t have a full sibling or family member who was a match for a transplant, but he only had a slight response to the chemo.
“By about mid September they started looking for a donor for him and we were still hoping he would respond — some people do respond late,” Patrice said. “It was pretty clear to us that as low as his numbers were remaining that the treatment wasn’t working for him.”
Ryan was one of the rare few who had multiple matches within the donor registry.
“That’s one of the things that families in this situation really worry about,” Patrice said of finding Ryan a donor. “There’s always in the back of your mind, you know you might have to go to transplant and look for a donor. I think that was one of the biggest reliefs for me, when I found out that he had donors available.”
As for Ryan’s donor, for now they remain anonymous.
“They don’t share a lot of information,” Patrice said of the donor. “But we do know some things and we have some clues here and there.”
What they do know is the donor’s age, and that it was a man, and his blood type. Patrice also feels reasonably certain that it wasn’t someone from Europe because she didn’t have to sign a Mad Cow disclosure form. She also knows that the donor gave their marrow the same day that Ryan received it because it was flown in fresh as opposed to frozen.
“Our best guess is that this person is in the US, at least one state away,” Patrice said.
She added that after the one year mark, if both parties want to, then they have the possibility to meet.
Patrice is cautiously optimistic about the future and is encouraged that the team of doctors treating Ryan feel he is doing well so far.
“A bone marrow transplant is the one thing that can potentially cure him, not just put him into remission. But, there are a lot of things that can go wrong in the meantime with a transplant, so it’s really one of those situations that the further you get out from it the better you feel and the more confidence you have that things are looking up,” Patrice said. “I’ve seen kids get six months post transplant and all the sudden they have something major go wrong. So it’s one of those things that you want to have guarded optimism.”
For now Patrice and Ryan’s days are filled with clinic appointments. They are staying at Ronald McDonald house to be near the clinic and the hospital in case of any complications which could suddenly crop up.
Day 100, on Sept. 7, will be the first milestone for Ryan. If he’s doing well then, he can be discharged from Seattle Cancer Care Alliance and come home while continuing appointments with his oncologist. Then come the one year and two year markers, with the possibility of being declared cured sometime after the two year mark.
Patrice knows her son has a long road ahead, but she hopes to raise awareness both of Aplastic Anemia and about bone marrow transplants.
“One thing I want people to know about registering is there are a lot of myths about how bone marrow transplants were done in the past,” Patrice said. “A vast majority of bone marrow transplants are stem cell transplants where the donor essentially donates blood, it’s called a peripheral stem cell transplant. Even with (donating marrow) they do it under anesthesia and it results in the donor maybe having a sore back for a few days, but nothing excruciatingly painful.”
Patrice recalled the moment on day zero when the medical team told her the plane carrying the donor marrow for Ryan had landed.
“That was really emotional for me,” Patrice said. “It really made it real in that moment. And just to think about not only the fact that someone donated but there was also a volunteer who sat on a plane with this bone marrow, this precious cargo, in a red Igloo ice chest to hand deliver it to the hospital for Ryan.”
For more information about Ryan visit his Facebook page at www.facebook.com/plateletsandpuppydogtails.