Duplicated on our CaringBridge site for permanent record here.
March 7, 2021, written by Mama
110 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 4 back in the Oncology ward.
First things first: Thank you for praying the novena to St. Jude with us. Guess what happened the morning after the novena's conclusion? Our surgeon Dr. B---- walked in today to announce that he had scheduled the initial scan to check for the location of Thomas's pancreatic leak! It is scheduled for Monday afternoon and is so important that the surgeon hopes to be there live in the room, so that he can adjust Thomas's body location live-time, instead of just looking at the scans later.
If Thomas has a true pancreatic fistula, that is very rare in children. Our surgeon said that the adult hepato-biliary surgeons at the hospital next door might have five adult patients in the hospital at any given time experiencing pancreatic fistulas post-operatively. However, among the pediatric patients (at both children's hospitals here in Charlotte!), this surgeon sees about one patient every five years experiencing a pancreatic fistula.
The first scan will be a less risky kind and would be able to show if the leak is the kind we hope for: pancreatic fluid escaping Thomas's duodenum. This would be repaired without surgery! If the scan does not show this, then Dr. B---- will have to order the riskier scan and determine where the actual pancreas is leaking and the repair for that is surgery.
Tomorrow, March 8, is the feast day of St. John of God, patron saint of hospitals, as he founded a hospital where he personally served patients for 10 years. St. John of God, pray for us!
* * * * *
I enjoyed almost two days at home. I think back to how it took about two months for Thomas to be stable enough for me to return home to spend the night. At first, I could visit home for only three hours, in which I was an anxious wreck the entire time. When I first began spending the night once a week, I was plagued by suffocating anxiety attacks. I always slept with my bags packed, keys by my purse, and wearing daytime clothing in case I had to rush back to Thomas in the night. Now, in these last few weeks, home has again become a sanctuary and a refuge where I love to visit and see my babies (none of whom are babies anymore). My three-year-old asks often, "Are you going to stay forever? I want you to stay forever!" Last night, he slept with me, sharing even my pillow, his little body squished up next to mine all night to make sure I couldn't sneak away to the hospital unnoticed.
In the morning, he played a hilarious preschooler joke on me when it was time for him to dress himself!
Chris and I swapped out and I enjoyed a nice afternoon with Thomas. He still has almost zero appetite and won't eat but a couple hundred calories all day, but today he was free of pain, for which we are so grateful. Also, he was not puny and quiet, but became quite chatty to me, talking much about old memories, asking questions about the big, wide world, and coming up with plans for the future.
We worked on his space puzzle, read numerous books, played Hungry Hungry Hippos and a new bumblebee game, and watched a Thomas the Train movie.
* * * * *
Numerous aspects of life are very hard, much of which I share publicly and big pieces which I don't share. After the prior couple of days spent wrestling with God, I am forcing myself to count my blessings. My boy lived when others have not. I recently read of a child at our clinic diagnosed with neuroblastoma in the same month as Thomas, but that child just died. When I feel like I, as a mother, "can't go on" after nine months on this journey, I force myself to realize that those parents would do just about anything to still be fighting the fight, instead of their child being taken home by God. There was little M----, the child Thomas played with the morning they were each going to have surgery, and both children landed in PICU with complications, but 51 days later, M---- died.
Our family has a new normal to face, but at least our new normal is not a permanent loss of our boy. I am scared of all his medical needs. I am scared of the burden on my mother's shoulders, particularly. I don't know how he will rejoin society or go in public with his current GI symptoms. I worry about our sleep deprivation caring for his night needs. I literally and truly have no idea how this child will receive nutrition by any means. I don't know when he will learn to walk again and I worry about my carrying him up and down stairs when my body and back are not in condition to do that. There are monetary worries and concerns about meeting the legitimate needs of all the other people in the family.
There is no going back. The family that we were before cancer is permanently altered. We can hope with time that we become grateful for the increased holiness, compassion, and interior peace that can, might, and should come out of this tragic experience. We can hope because Thomas has life and where there is life, there is hope.
My intellect and will are hopeful. God, I pray for you to make my heart hopeful.
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