An Urgent SOS From a Childhood Interrupted
Diana Sevanian, The Signal Weekly Columnist
Today, when 12-year-old Ryan Baker blows out the candles on his birthday cake, one very special wish will be on his mind: to beat leukemia and live a normal life again.
No child should have to ponder such thoughts on his birthday — or any day. But the fact is, that heartfelt wish is recited by many children each day of the year. By age 20, one child or teenager in 330 is diagnosed with some form of cancer.
For Ryan, his diagnosis of acute lymphoblastic leukemia (also known as acute lymphocytic leukemia or ALL) came when he was only 5. Sudden weakness and pallor alerted his parents, Tim and Sandra, to the suspicion that something was askew with their kindergartener.
“When I first learned that Ryan had leukemia, I couldn’t breathe and almost passed out. But I had to be strong for my family and stay in the fight,” said Tim, the general manager for a health products and medical supply distributor in the Valencia Industrial Center.
What has helped this Stevenson Ranch family “stay in the fight” is Ryan’s hope, gentle nature and intrinsically positive attitude.
“He is my hero,” Tim declared, with tears in his eyes.
At a time when youngsters are making new friends, learning exciting new things and having fun, little Ryan was undergoing his first intense experience with chemotherapy and radiation.
Painful, invasive procedures, isolation, severe nausea, vomiting, fear of the unknown, anguish over what is known — these are situations that no child should have to face. Yet, for the 4,000 new ALL cases diagnosed each year — and the legion of other pediatric cancers identified — it becomes an all-too-familiar way of life.
ALL, a cancer of the blood and bone marrow, is the most common type of cancer in children. The condition interferes with the normal development of stem cells (immature cells), which are supposed to become mature white blood cells (these fight infection and disease), red blood cells (they carry oxygen to all tissues of the body) and platelets (they cause blot to clot, preventing bleeding).
This aggressive cancer leads to severe infection, anemia and easy bleeding.
Although Ryan attained remission from ALL, he suffered a relapse around Christmas 2001. Again he endured chemo and radiation. Again this Meadows Elementary School student recovered.
But this past fall, after returning from a leisurely trip to Hawaii with his family, the disease made a vengeful U-turn. It was devastating news, especially for a boy who longs to know a normal childhood.
Doctors at UCLA Medical Center say Ryan needs a life-saving bone marrow transplant. For such a procedure, there must be a suitable marrow match. Unfortunately, his family members, including his big sister, Amanda, are not matches.
Maybe someone reading this column could be that needle in a haystack.
A bone marrow and blood drive for Ryan will be held Sunday at Church of the Nazarene in Newhall. The initial test consists of a small blood test to determine if you’re a potential match. (The National Marrow Donor Program Registry oversees such matches.)
“Finding the right bone marrow match for Ryan is critical, and we are hoping and praying that as many people as possible will take the simple blood test to see if they may be the one to help save Ryan’s life,” said Sandra, a devoted stay-at-home mom. “For those who come to be tested on Sunday, we thank you from the bottom of our hearts.”
If a possible match is found — even if not for Ryan, but instead for someone else on the list facing a life-threatening disease — the donor will be contacted and given a chance to help.
“What a powerful thing it is to be able to give a tablespoon of blood and possibly be the person who can save someone’s life,” Sandra said.
Also at the marrow and blood drive: Activities for children, music, food and a silent auction to help offset medical expenses not covered by the family’s insurance.
Event hosts are the American Red Cross and Layne’s Legacy Foundation.
The latter nonprofit is headed by a great lady I had the honor of interviewing several years ago — Theresa LaRue. Theresa and her husband Scott lost their beautiful son Layne in 1995 to an extremely rare and deadly genetic disease. Since that time, and thanks to successful (donated) umbilical cord blood stem cell transplants, two of Layne’s brothers who had the same immune system-destroying condition, survived — and thrive today. (One of the LaRue’s three living sons does not carry the genetic aberration.)
Although Layne lost his battle, the foundation named for him graciously helps other families faced with similar situations by raising funds, holding marrow and blood drives and promoting education and awareness.
Cancer, or any life-threatening illness, brings many difficult challenges. It also offers important, illuminating lessons.
Tim Baker reflected on those beneficial “side effects.”
“Even though our family life is anything but normal,” he said, “we have tried to provide a stable, positive environment for Ryan and our daughter Amanda. We have missed out on many things other families may sometimes take for granted, but we have found deeper meaning in other more important things like hugs, spending time together, and close conversations.”
Both parents assert that their upbeat attitudes and religious faith help carry them through the battle.
“I am truly blessed to have a wonderful husband, daughter and son, and we need to enjoy each other and not dwell on what is difficult in our lives,” Sandra said. “That doesn’t mean that sometimes things don’t hit us like a ton of bricks. But it does mean that we deal with it and move on to the next moment when we can. I also know that God is in control, and He has a plan for this awesome little boy.”
Ryan, who enjoys playing video games, reading and math, hopes to one day become a famous actor. The leading roles he’ll seek: being the “good guy.” But before he can do that, he needs to beat a bad guy that has plagued him since kindergarten.
As he eagerly awaits his bone marrow transplant, Ryan again must endure illness, grueling therapy and the effects of treatment.
“When I’m nauseous, I think about the times I wasn’t nauseous, and I just wish I could feel like that again. Because I remember how good it felt to just feel normal,” he said.
On “feeling normal,” Ryan has a message for every child and adult: “Don’t take your health for granted, because you don’t know how you are going to feel tomorrow.”
The bone marrow drive for Ryan will be held Sunday from 1 p.m. to 5 p.m. at Church of the Nazarene, 23857 The Old Road, Newhall. Appointments are preferred; to make an appointment, call 259-5272. Potential donors should be 18 to 60 and in general good health. Diana Sevanian lives in Stevenson Ranch. Her column reflects her own views, and not necessarily those of The Signal.