Just a little more…
August 30, 2012 by Mike
Hi…This is Alison. I got a call from some dear friends (Mike and Jill) a couple months ago. They told me about a close family they know who are inspiring. I asked Mike and Jill if they would be willing to share with you (our readers) this story. Get a tissue…I needed one. Thanks Mike and Jill for helping us to do just a little more.
Last December my wife and I found ourselves carrying Baskin Robbins mint chocolate chip shakes into the primary children’s medical center. One of those places you don’t want to go but a quiet building full of children whose situation makes you reflect and appreciate the greater things in life. We were walking through the halls stealthily concealing our coveted gifts.
As we entered the immunocompromised unit we came across two signs on adjacent doors.
One read “big Fish” and the other “little Fish.”
Natalie (8) and Alice (2) have been friends of ours since birth. Both girls had recently been diagnosed with a rare condition called Leaky SCID (severe combined immune deficiency). Or in other words, the girls lack a normal immune system to help them battle normal, everyday germs and bacteria. However, looking through the window appeared normal. Life seemed to continue on as Natalie painted turtles and played tricks on the nurses while Alice dressed in her Cinderella gown and had tea parties with the staff. Little did we know this was before the onset of heavy meds and many long and sick days ahead.
Believe it or not, the diagnosis of Leaky SCID (or bubble boy) was welcoming news to the Fishes.
For years Natalie battled an invisible disease that perplexed doctors and even more so, her parents. Blood transfusion after blood transfusion and countless hospital visits were exhausting and emotionally wearing on the Family. Natalie spent her sixth Birthday in a coma with doctors surrounding her trying to figure out what was wrong with this sick little body. When Natalie and Alice’s Mother Lisy gave birth to their newest baby girl both of her other precious girls were already in the hospital fighting for their lives. It turned what is usually a magical and blissful time into one of discouragement and worry. This new diagnosis for their two sick little girls brought hope to their family.
Both girls received their chemotherapy prior to bone marrow transplants. Of course marrow needs to be an exact match. Younger brother Blair (4) was Natalie’s match. Prior to the procedure Blair would often say with pride “I’m my sister’s medicine.” Alice on the other hand relied on the charity of a stranger who gifted her marrow. There is a one year waiting window before the family can express their appreciation to this individual in person.
Since December, the family has lived in quarantine to help protect against bacteria and infection. The new marrow is slowly taking effect but this has not come without complication or ease. There have been many weeks that the Fishes race between hospital and home sometimes with both girls back in the hospital and other times one is recovering at home while the other is in the hospital. They have become a family that cherishes those times when everyone is living under one roof. Many nights they are divided between hospital and home with prayers and hope going toward that little girl lying in the hospital bed. Both girls initially received large amounts of steroids to promote the new marrow growth. The chemo has almost stripped Natalie entirely of her hearing. The girls are also on diets of gluten free foods and other restrictions. Taking medications alone accounts for hours each day. Going to school is a dream along with many activities like swimming. The outlook is optimistic but for now the focus is on recovery.
The Fishes have shown us the power to overcome. They have an unconquerable spirit that is illuminating in others who have become involved in their story. I invite you to become involved by sharing this story with the ones you love. We have also started a campaign to give back to the Fish family. You can check it out here!
The doctors at pcmc say the bone marrow transplant could have a 90 percent success rate. Hopefully with all of our support and prayers, the girls will live their “happily ever after.”
Also, you can follow the Fishes on their blog at www.fishesformarrowwishes.blogspot.com
From left to right there’s Alice, Matthew, Natalie, Tyler, Blair, Lisy, and Evelyn.