I've been an ardent supporter and advocate for The 46 Mommas, since their inception in November of 2009. There were only a handful of Mommas who knew me, most had never even seen my name. Yet, month by month, day by day, I watched as this incredible group came together and created a groundbreaking, history making event. So proud of these women, honored and humbled to be counted among their ranks.
We are from Spokane, Washington. We are a family of five. Myself, former Medical Billing/IT employee, now a full time Stay-At-Home Momcologist. Larry, Jack Of All Trades, full time Daddy & Partner. Curtis, 12, sibling extraordinaire and an Asperger's kid. AnnMarie, 8, sibling, advocate and a ray of sunshine. Gregory, 5, grace filled, delightful and The Cancer Kid.
In late February of 2009, Gregory had a resistant cold and wound up in the ER for fluids. Over the next several days, our world was turned on it's end. Gregory was diagnosed with Juvenile Myelomonocytic Leukemia (JMML). There are 25-50 cases of JMML diagnosed every year. JMML cannot be put into remission with standard chemo. Our only course of treatment was a Stem Cell Transplant. We began the matching process. The siblings were not a match. On April 21, 2009 we received the magical call that we had a 10/10 match. An anonymous 23 year old female, in the US.
Gregory and I left Spokane on May 11, 2009, leaving Daddy and the siblings behind. Gregory began his pre-transplant chemo on June 1, 2009. On June 11, 2009, he received his precious gift of new Bone Marrow Stem Cells at 4:10 am.
We remained in Seattle for 5 months. Just over 12 weeks of inpatient stay at Seattle Children's with outpatient care at Seattle Cancer Care Alliance. We returned to our area on October 11, 2009. With two siblings in elementary school and Gregory having a VERY fragile immune system, we made the decision for Gregory and I to live at our family's Water Retreat on the Spokane River in Post Falls, Idaho. While there, Gregory had a severe flare of Gut Graft Versus Host. We spent eight weeks in the hospital from Christmas to Valentine's.
At Gregory's one-year Post-Transplant follow up, he was found to still have No Evidence of Disease and remained 100% donor. At this point we could lessen up on the strictness of our lives. We started to come out of our isolation bubble.
We returned HomeHome in August, began his re-vaccination and hope to have him in pre-school, soon.
While his cancer is gone, he is still in treatment for Graft Versus Host. He is immune compromised and still on a dozen different medications. He remains medically fragile while building his immune system. We never know, from day to day, what it will bring. In terms of the big picture, he is doing incredibly well. A long list of side effects, but nothing that can't be dealt with. He is very small and will eventually need Growth Hormones. We take it moment to moment, grieving for what's been lost and rejoicing in the simple pleasures.
This is not the optimum way to gain perspective, but true perspective we now possess.
Raising awareness for Childhood Cancer and funds for Childhood Cancer Research is a driving force for me. These kids need us, these families need us and the generations to come need us. There are young researchers, waiting for us to provide them with the resources to spark that idea, that will bring a cure.
Let's do this!
Oh, yeah! I'm a fierce knitter, lover of music, totally random, peace loving, community embracing, voracious reader, writer and MOMCOLOGIST!
Gregory's Odyssey with Juvenile Myelomonocytic Leukemia (JMML): www.mindithemagnificent.com
Gregory's CaringBridge: www.caringbridge.org/visit/gregorybibb
"You are the bows from which your children as living arrows are sent forth." ~ The Prophet. Kahlil Gibran
