There are times in our lives that we are forced to stop from your busy day-to-day lives and reflect about what is really important in life. Sometimes, it is as basic and essential as life itself. It is not so shocking to hear that an elderly relative is sick, but when a baby has a life-threatening illness, a swarm of emotions take over you. Today I am taking pause from my food writing to share Sophia’s story.
Sophia is my baby cousin. She just turned two. For her birthday, Sophia spent the day at the hospital getting her weekly infusions. The nurses and staff decorated Sophia’s cubicle for her birthday. Sophia’s mom, Golnaz, and I are second cousins. It’s complicated from a family tree point-of-view, but for us it is quite simple. We are close in age and she has always been one of my closest friends and confidantes.
When I was pregnant with my first child, my husband began his new job in San Diego. I was in LA and had a month until my due date, so I stayed behind, not wanting to leave my OB/GYN. Golnaz gladly accepted the job of back-up labor coach for me, in case hubby could not make it to the delivery. The three of us attended my birth classes together. We looked like one of those progressive couples, and we snickered and joked amongst ourselves. In the end, both were there for the delivery of my baby boy. Golnaz later told me that the whole experience left her high and smiling uncontrollably for weeks afterwards.
Two years later, my wonderful cousin drove almost three hours to visit me in the hospital for Middle-Child’s delivery in San Diego. She also came down two years after that to babysit my boys with my mom while I was in the hospital delivering my third baby. I pledged to Golnaz that I would be there for every one of her baby deliveries, too.
And I was.
By now, Golnaz was only an hour away from me. And I eagerly waited for the phone call and updates as baby Sophia’s arrival approached. What an honor to be the first in the family to meet the newest addition. I stayed all night with my cousin in the hospital. I advised Sophia’s Daddy to go home and enjoy a quiet night’s sleep to prepare him for the onslaught of sleepless nights. I stayed at the hospital and did my best to change diapers and calm this beautiful newborn between my 30 minute cat naps on the lounge chair. I had plenty of experience of functioning on little sleep. I returned home the following night to share stories and pictures with my kids. They couldn’t wait to meet their new baby cousin.
With Sophia only an hour away, we visited as often as we could. And then Sophia became sick and had a difficult time staying healthy. Thirteen months ago, she was diagnosed with a very rare and life-threatening disease of the immune system called Giant Cell Hepatitis with Autoimmune Hemolytic Anemia. There are fewer than 100 cases of children with this condition known worldwide, so the disease and its treatment are not entirely understood. It is considered to be an aggressive autoimmune disease that generally strikes children before age 2 and can progress rapidly to severe anemia, liver failure, or both.
Sophia has been receiving various treatments, including two different chemotherapies, which have slowed down her disease but have been unable to stop it from progressing. As a result of the chemo, Sophia is severely immunosuppressed and is essentially a ‘bubble-baby’, having minimal contact with people and the outdoors. Her doctors are now giving a third chemotherapy, but if this doesn’t work, then she will need a bone marrow transplant (BMT), possibly within the next month.
And that’s where Sophia needs your help.
Thus far, after an international search for a matched bone marrow donor, Sophia’s doctors have not been able to find a ‘perfect’ match for her. Using a donor who is not a ‘perfect’ match decreases the likelihood of success and increases the possibility of short- and long-term complications from BMT. Please consider registering as a bone marrow donor at BeTheMatch.org.
Anyone age 18-60, of any race or ethnicity, and in general good health, could be a match for sweet Sophia. If you are of Jewish descent, especially Iranian and/or European descent, then the chance of a match may be higher. Even if you are not a match Sophia, you may be a match for someone else, which gives you the power to save someone’s life and is why registering is so important.
Golnaz has told me that despite this ordeal, Sophia has maintained her good spirits, sense of humor, and playfulness. She loves giving (and getting) hugs and kisses, reading books, cleaning (particularly swiffering the floors and wiping the counters), playing in her kitchen, and having tea parties. Sophia has learned the names of all her nurses and doctors who have been working hard to save her life.
I have not held Sophia in a year. Having three kids means we are a germ factory. This fact has forced me to forgo my selfish desire to visit and hug this precious girl, for fear of getting her sick. It is everyone desire to see Sophia grow up, play outside, have friends, go to school, and live a long, happy, healthy life.
Some basic information about bone marrow donation through BeTheMatch.org:
Step 1: You must be between the ages of 18-60 years old.
Step 2a: Confirm you meet basic registry and medical guidelines and click all the check boxes, then click “Go” to complete the online form here.
Step 2b: If you do not want to register on-line, you can call 1 (800) MARROW-2 [1 (800) 627-7692]
Step 3: Receive a kit in the mail, give a cheek swab, and send it in.
Step 4: If you’re a potential match for a patient, you will be called for additional testing.
1 in 40 registry members will be called for additional testing for a patient
1 in 300 registry members will be selected as a possible donor for a patient
Step 5: If you are selected as a donor:
- You will need to give a blood sample for further testing.
- You will be asked to make a time commitment of up to 30 to 40 hours over a 4-6 week period to attend appointments and donate.
- If you donate peripheral blood stem cells (PBSC), you will receive injections of a drug called filgrastim to increase the number of blood-forming cells in your bloodstream.
- If you donate marrow, anesthesia will be used
Thank you for reading this post. Please share it to spread the word so we can help Sophia and anyone else who needs a bone marrow transplant. Sophia’s parents recently created a Facebook page where you can also follow Sophia’s progress.
June 2015 Update:
The original post was written in November 2013. Today Sophia is 3 1/2 years old. Between the steroids and chemo medicine, Sophia is progressively getting healthier and stronger everyday – without the need of a bone marrow transplant. She now has a 7-month old baby brother, who is not a match for her, but is in love and in awe of his big sister’s antics. Although she is able to venture outside, her immune system is still fragile. There is not enough cases of children who suffer from Autoimmune Hemolytic Anemia to determine Sophia’s recovery, but the doctors are optimistic. Please keep Sophia and all sick children in your prayers.