Elise's treatments feel so long ago...and, yet, they feel like they are only just past the corner of my eye...
Here is a repost of the short, short version of Elise's path that I did as a guest post over at With a Little Moxie.
"Some days my daughter's bout with cancer seems like a bad dream, something that happened so far in the past, I question if it was real. Some days, I will get a tightening across my chest and panic will raise it's ugly head when I see her have a lethargic day, and I can barely keep myself sane and separated from that time in our lives.
Elise is 9 years old. She has been "cancer free" for 7 of those. This is a fact that colored so much of her babyhood that it's impact is still being seen. She is an inspiration for those starting the treatment path. She is a touchstone of miracles for our friends. She is a painful reminder to our friends that lost babies who were on treatment at the same time.
When Elise was born, we were completely blindsided by the fact that she had Down Syndrome. I had passed the blood screenings, and I was only 26 years old. In retrospect, they kept bumping my due date back because she was so tiny and they went "searching" for her tiny little finger during my second (of only 2!) ultra sound. All the "little" red flags were completely blown off...and it really should have been looked at closer...but I think it was better that we didn't know. My husband was in graduate school, I was teaching 7th grade, and we had a gorgeous 4 year old boy...to have known would have been such a huge stress and worry for us...we got to enjoy my pregnancy and not panic wondering "how we'd do it".
They also missed that her heart had massive holes in it. She was in cardiac failure in less than 3 months after she was born. She had her heart repaired at 3 and 1/2 months, because we simply ran out of time. Post surgery she was put on a diuretic to keep fluid from collecting around her heart. But after an unfortunate day when she had a couple of runny diapers, she turned got dehydrated and turned blue. She got a ride the the hospital in an ambulance. It wasn't just a mommy panic moment.
We took Elise in monthly for a blood draw and a bone marrow aspiration every 2. She had quite a few platelet transfusions. But the blasts continued to hold steady, and so we continued to watch. During which time, my husband graduated from school; he got a real, paying job; and we moved from Tennessee to Georgia. (Children's Healthcare of Atlanta ranked very high among children's hospitals and had a great reputation in cardiology and cancer treatment. So it factored very high in our decision-making process.)
The fact remains, however, is that even though kids with Down Syndrome tend to be more fragile and more susceptible to cancer, the same "fragile" cells tend to respond much better to much less chemo. The protocol that we chose had 99% survival rate. The numbers that our doctor gave us at the beginning of her treatment was that AML leukemia in typical kids had a 30% survival rate at 5 years after treatment to 98% survival rate at 5 years if the child had Down Syndrome. In less than a year and a half, we went from "Oh, no. Our child has Down Syndrome, what will her future be like?" to "YES!!! Our child has Down Syndrome, she HAS a future!!"
Every year, I celebrate her remission date. September 10. We have her favorite food and I get her a small present. We watch her favorite movie and we snuggle her with abandon. Some years we even have cake, the "mark" years. She doesn't have any idea why, her siblings have no idea why, but I cannot let the day pass without a party. It is the day that we were given her back...and the beginning of "mostly normal" in our lives. She finally had the strength to attempt walking; the energy to start talking, signing, and communicating; the vitality to touch more than just her family with the Muchness that is HER.
"The Club" of families who celebrate their children with Down Syndrome is large and loving. "The Club" of Survivors with Down Syndrome is smaller, but even more important. Don't hesitate to reach out! And ask and hug and educate!!"