Okay, first the 11th Commandment: THOU SHALL NOT FREAK OUT.
I have some major news to share. Here is the lay-out: 1. The news 2. The plan 3. What we REALLY need you NOT to do. 4. What you can do to help
By now you know The Conqueror has Trisomy 21, which is an extra copy of the 21st chromosome. That carries extra genetic material which alters how the body is formed and can contribute to issues like breathing (smaller passageways), heart problems, GI issues, etc. It can also cause malformations in the platelets and cells in the blood. Remember when our buddy became sick last year? As he recovered, we were referred for blood tests because his platelet count was low. This led to a bone biopsy, which showed that his bone marrow is “sick”.
The Conqueror has myelodysplastic syndrome, a form of pre-AML associated with Down Syndrome. This is pre-leukemia. MOST IMPORTANTLY, this is VERY TREATABLE and CURABLE. The success rates are in the 90%s.
2. The Plan:
The Pediatric Oncology team has been AMAZINGLY impressive. The doctor practiced for 10 years at Texas Children’s Hospital, so my confidence is boosted already. (Whoop!)
The treatment is very successful because it is intense. He will receive 6 cycles of chemo-therapy that will last a month each. This will be done as in-patient care because the immune system will be very weak and there will be side effects. I will be going to UNC with The Conqueror next week to begin the first cycle. My amazing husband will be here with Firstborn in the meantime. We WILL be able to come home for the final week of the treatment cycles if his system is strong enough. In the meantime, I will be rooming with my little buddy and bringing some spunk to “Camp AML”. If all goes well, he will be in survivor/recovery and maintenance by summer and we will leave a trail of broken hearts behind us…
3. WHAT WE NEED YOU NOT TO DO:
we want you to pray for us and share requests, but we are keeping this information relatively contained. Please protect our information by not posting last names or details of our care anywhere on the internet. Feel free to direct people to message or e-mail me privately.
PLEASE don’t gossip about us. We want to balance between being a part of a larger family and maintaining privacy and protecting our team.
Try to keep the “I’m sorry”, “I don’t know how you do it” “God won’t give you more than you can handle”, etc. to a minimum if possible. The hardest part of telling people my baby would have Down Syndrome was the pity. It’s hard to charge ahead into a new battle when people feel sorry for you. Humor, encouragement and feeling ‘normal’ is much more helpful!
4. WHAT YOU CAN DO:
FIGHT WITH US! The best thing you can do is PRAY for us. Feel free to put us on prayer lists, maintaining privacy and protection as you do it.
You will be able to visit us at Raleigh and see us. While at here, we will need some help with the care of Firstborn after school. We will accept any and all help at this point, but we need a little time to organize. More details to follow.
Before you call or comment, please take a minute to pray and take a deep breath. We are VERY optimistic. Remember, the treatment and cure rate is 95%! We are very used to long separations and trials and we are rejoicing in the suffering. Jesus WILL be glorified in this! Although we never would have picked this journey for ourselves, we are thankful that we may be strengthened and will be able to testify to the goodness and faithfulness of our God all the more and to a new group of people.