Sep 30, 2016 Latest post:
Jun 29, 2017
Entry by Jillian Miller — 9/30/2016
Thank you, Friends, for caring about the Journey we are walking with Jack Tar. Exactly 3 months ago our lives turned upside down. Looking back at these 90 days,, though, we see how God has prepared us for this next big step.
When I brought a pale and lethargic Jack to the doctor on June 30, I thought he was low on iron. We figured a change in vitamins would correct his condition. Within hours we were whisked by ambulance to St Louis Children's Hospital and were given a dire prognosis. Those first days of learning how to spell "leukemia" and many other words associated with bone marrow failure are a teary-eyed blur now. After days of hemoglobin and platelet transfusions, a bone marrow biopsy and Jack's 7th birthday on the Fourth of July, we were finally given the true reason for Jack's lack of blood. He has-an extremely rare disease called Aplastic Anemia. Not Leukemia (!) - like doctors had bet - but a disease that in the 60's and 70's would have been a death sentence.
Jack's Aplastic Anemia was acquired by an unknown virus that settled in his bone marrow, ran its course, and left this mess behind. We will never know for sure when or how this happened -- but that is typical of 75% of people with acquired Aplastic Anemia. The end result is that Jack's stem cells are not producing enough white blood cells (which fight infection), hemoglobin (which carry oxygen) or platelets (which stop bleeding). To keep Jack alive, he has been receiving nearly weekly hemoglobin or platelet transfusions through a port surgically placed in his chest. God Bless Blood and Platelet Donors!!
When Jack was diagnosed on July 7, we were completely unprepared. We are a tight knit family with four children -Ava-15, Greta-13, Max-11 and Jack -7. Cole is a firefighter with the Quincy Fire Department and I teach voice lessons to a great group of high schoolers and adults. Together Cole and I also run a chimney sweep business. We have an active lifestyle and our kids have never had anything more than a common cold or 24 hour stomach flu. Hospital culture was foreign to us Now, we are thanking God for sending us to the caring and knowledgeable staff at St Louis Children''a Hoapiral. From the beginning they have cared tenderly for not only Jack, but us fretful parents, worried grandparents and concerned siblings.
Jack's condition wavered between being categorized as Severe and non-Severe so we were given two courses of possible treatment: Immunosuppresssive Therapy or Bone marrow Transplant. After hearing what each treatment entailed we immediately chose what we thought would be the less invasive treatment - immunosuppressive therapy . IT entailed implanting a port near Jack's heart to receive an immune suppressing drug made from horse antigens called Atgam. Over 6 days in mid-July, Jack and Cole and I lived in his hospital room watching the side effect fevers, hives and stomach sickness come and go and praying for a miracle. The Atgam treatment is intended to knock back Jack's T-Cells which were attacking his own blood. IT combined with 3-6 months of taking an icky immune suppressing medication called cyclosporine can reverse the cause of AA in some. The therapy is relatively new, though. There are only about 500 cases of SAA diagnosed each year which means there are not many patients available for clinical trials.
For ten weeks our Jack Tar has endured twice weekly blood draws, weekly transfusions with difficult port access, allergic reactions to platelets, unplanned overnight hospitalizations along with countless trips to St Louis. In addition, the cyclosporine has compromised the functioning of his kidneys.
Through hours of research, Cole and I know now, too, that IT does not always fix the bone marrow failure and there can be recurrence of Aplastic Anemia or another bone marrow failure disease later in life. We not want our Jack to be dealing with bone marrow issues into his 20's, 30's or 40's God has already provided us the miracle, though. His older brother, Max.
We learned on August 4 that Max is a perfect HLA Sibling Bone Marrow Match. Only 30% of people have a sibling match and all clinical research points to sibling stem cell transplant as a "Cure" for Aplastic Anemia. A CURE!
Bone Marrow Transplant does not come without its risks though. It entails a 4-5 week hospital stay in isolation where first Jack would receive chemotherapy to knock out nearly all his remaining stem cells. Max's bone marrow would then be "harvested" and transfused into Jack. Following that, the wait for 'grafting' begins--all while never leaving the glassed in protective room at Children's Hospital's ninth floor BMT Unit. Once that miracle becomes reality, Jack and I would live within 50 miles of the hospital for 100 more days and then the next 6 months Jack would not be able to attend school.
I am re-reading the above paragraph just now and noticing it is time to change the "would" to "will" as -this is no longer an 'imagined hypothesis" but a reality.
A Blessing. A Miracle. We are praying our way through ....the sickness and risks of complications the isolation-the separation of our family for many months. Through it all, though, we remain focused on the Road to the Cure for which we have prayed -and know God has worked out the details as we walk through this hurricane instead of around it.
We thank you again, Dear Friends, for your prayers and your support during this next year. You have blessed us already with ears to cry to, words of wisdom to cling to and countless moments of comfort.
While this blog site is not the perfect tool to communicate personally with each of you, it will at least provide a common way for us to share this journey with the people we love on Team Jack Tar.