Monday, October 24, 2016
My soul shall be satisfied as with marrow and fatness...
Day +5 Update from the PICU:
Rowan is Day +5 after his second back to back bone marrow transplant.
He would technically be Day +80 after transplant number one, which means we would have been heading back home to Texas in about 3 weeks or so...had that transplant been successful.
He has currently been in the hospital for 93 days, 8 of those most recent days have been spent in the PICU.
Again, those are just numbers. I pay attention to them because I'm a numbers girl. They mention them every day in rounds, but that is how they document things. We track them because it gives us perspective. But when it all boils down...they are just numbers. What really matters is how he is doing day by day, and sometimes, hour by hour.
This has been one of the scariest weeks of my life. First they pulled an RRT (Rapid Response Team) to Rowan's room last Sunday. Risk nurses from PICU and our BMT doctors from the Cancer Care Unit all came to Rowan's room to observe his current status. Moments later (after seeing how bad Rowan was getting) the attending physician called a Code, in an effort to escalate the transfer to PICU immediately. Within minutes, Rowan was down in PICU. Within hours, he was completely unresponsive in a coma.
Over the past 8 days he has endured chemo, radiation, LP, xrays, ultrasounds, shunt tap, CT scans, MRI, been intubated, been extubated, put on high flow 02, transitioned to BiPAP, given a foley, had several ivs placed, pulled, and placed again, had a second double lumen central line placed in his groin, received his second bone marrow transplant, been placed on dialysis, started on insulin, had an emergency shunt revision surgery, and had over a dozen units of rbcs or platelets in these 8 days alone.
Rowan has many battles to overcome right now. His lungs are wet, he is having trouble coughing up secretions and he is requiring breathing support. He has mucositis from his mouth to his bottom again, and is experiencing severe oral pain and tummy issues. He has a large hematoma surrounding his left kidney and is exhibiting signs of kidney damage. He has a rash all over his hands, feet, legs and torso. His liver function labs are trending downward. He has increased intracranial pressure and headaches. As a result of the post transplant chemo he just finished, he now has hemoragic cystitis and bleeding from his bladder. He has CMV virus in his CSF fluid, or viral encephalitis, which is causing an altered mental status. All of this is happening when he is trying to engraft from the second/rescue transplant. It doesn't even seem possible that all of this could be happening to one little boy...all at once...and all during the most critical time of his life. But it is.
Rowan did not speak to us for almost 5 full days. Some days he couldn't even squeeze our hand or wiggle his toes. It is one of the most frightening things you can watch...your child not responding to you at all. But this kid is a fighter. He has so many people pulling for him. He has so much more to teach us. He wants to live...so he may praise God for the life he loves so very much. Today Rowan started his GVHD medicines, as well as gcsf to help start increasing his white counts when they begin coming in. His counts have been zero for 2 months straight (so extremely dangerous). We need engraftment as soon as possible. He needs those cells to make this transplant a success. he needs those cells to help fight everything additional he is up against (multi-organ issues). He needs those cells to live!
Rowan's friend Jason gave me a specific scripture months ago. It is one his own mother recited multiple times a day when Jason was undergoing his own transplant. Now that Brian's cells are in, and we are done with the pre- and post-transplant chemo, and we are starting the gcsf, it is time for this verse to become my daily prayer as well.
"My soul shall be satisfied as with marrow and fatness"
marrow and fatness...
marrow and fatness...
MARROW and FATNESS!
Please continue to think of Rowan, and pray for his health and recovery. But if you don't mind, please also join us in reading that full verse, and in reciting that specific portion of it whenever you think of it: "My soul shall be satisfied as with marrow and fatness". We need his cells to grow, his marrow to fill his bones, as soon as possible. And we trust and believe that God can and will complete the work he began in Rowan's life, and will make this happen.
He will wake up fully, he will respond completely, he will remain lucid, he will rise!
And our mouths will praise God with "joyful lips!"