Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
I am honored to have Tiffany from A Little Muchier Muchness share her story today. It’s a story of hope and sadness – of courage and resilience. And ultimately, of joy. One that we can all learn from,
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.
They did a blood battery just to make sure there wasn’t something else going on and the results came back telling us that she had almost no platelets. They are the clotting agent of the blood, and the most fragile part of your blood. At 4 months old, she was a little old for “transient leukemia”, but they were willing to watch and wait, because she had minimal blasts in her bone marrow sample.
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.)
4 months after we moved to Georgia, Elise got a scan for what we thought was an eye infection. It wasn’t. Even though she still had minimal blasts, somehow over the last year, the cancer had collected in the form “liquid tumors” in her sinuses and behind her eye. The doctor told us that practically, the tumor was about 2 weeks away from her optic nerve. It was primarily in her sinuses, and miraculously, your sinuses can regenerate. With that kind of information, we were incredibly thankful that we had been watching this for a year. If we had not been watching it carefully from month to month, our first clue to her liquid tumors would have been her loss of vision, which would have been irreversible.
And so we started a chemo program that was still in it’s experimental stages. I had had the time over the last year to read up and research on chemo and Down Syndrome. Which, frankly, was primarily online medical journals. There was 21 pages in the Medical & Surgical Care for Children with Down Syndrome: A Guide for Parents book. And a page by Len Leshin, nets a paragraph. And in the last 7 years, I am not seeing much more information out there. As a matter of fact, I would say that the best collection of information for any parent faced with a leukemia diagnosis is other parents.
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!!”
Elise’s treatment lasted from February 2004 to September of 2004. It was all in-patient. She would receive treatment for a few days, stay for a week while we waited for her blood counts (platelets, neutrophils, and whites) to come back, and then we would go home, in lock-down. And we would repeat. The final month of treatment, her counts were so suppressed, that she had to stay at the hospital for a full month.
During this time, we farmed our beloved son out to our parents. He enjoyed going to “grandparent camp” but we missed him terribly. He would come home when Elise was stable enough, but that often resulted in the weekend before the next round of chemo. We talked to him every night, and staying with our parents gave him a measure of normalcy that we could never have given him during that time. I often reflect that I do not know what we would have done if our parents had not so graciously stepped up and gave him the gift of “normal”. I know it would have been desperately hard on all of us.
My biggest worry for Elise is relapse. You are never free.
The reason that figures big in my nightmares is that for all that kids with Down Syndrome respond well to lighter chemo, they have a hard time with relapse. As in, the numbers of relapse survivors bottom out…they were in the single percentage points the one time I was able to find them. The numbers are similar if they have to go to a Bone Marrow Transplant. Their bodies really struggle with the chemo required to get them to zero for the transplant prep.
This is where research will be our biggest weaponry. Our kids are very susceptible to cancers, and in cases like Elise where the cancer sneaks in the back door, the probability of “Round One” working without fail is slim…we need to have access to the “Big Guns”, too.
Post Remission, there are several dates that figure in pretty high for relapse. One year, two years, five years, and puberty. I am thrilled to mark those dates off. Elise has celebrated One, Two, and Five years out. We are on the cusp of puberty, and I hope to celebrate that too.
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.
If your child presents with any symptoms: petichae, lethargy, bruising, constant illness; do not hesitate to ask for a Complete Blood Count (or a CBC), it will take almost no time and the peace of mind is priceless.
If the unthinkable happens, contact your local Down Syndrome Association or online/Facebook support groups and look for parent of kids who are survivors. If your child DID survive, make sure that that fact is out there!! The importance of support and information cannot be understated. And in our position, it may be the only useful information out there.
“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!!
Thank you so much, Tiffany.
As Tiffany said, research is critical. Please. Donate today – in honor of Oliver, fighting for his life now, in honor of anyone in your life who is also fighting. In honor of Elise, small warrior who already fought. In honor of all, and in prevention of all that may come if we don’t do something.
$5-10: 1 entry to the “thank you” giveaway
each $10 increment thereafter= 1 entry ($50= 5 entries, for example)
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