Stem Cell Round #1 Update

Lows

This has been a difficult week for Noah.

Last Sunday evening, Noah expended his last little burst of energy before his actual stem cell transplant and asked to go for a walk. Kim very briefly pushed him around the ward with his double stacked IV pole in a wheel chair and then brought him back to his room for bed time.

Monday was the day of the actual stem cell infusion. Before starting, Noah had to be moved to another isolation room on the ward, one that had been freshly sanitized, and after hauling and sanitizing all of his personal affects, he was laid into his new bed and given back his stem cells. This was a pretty innocuous process as the stem cells were delivered intravenously much like any other blood product would be. He had to be monitored fairly closely because there can sometimes be side effects caused by a preserving agent used in the stem cells. Luckily, things went by uneventfully.

Through Wednesday, Noah's mucositis really began to take hold. He began to salivate incessantly and was put on a good dose of morphine to help manage his discomfort. The mucous would build up throughout the day, Noah would grown increasingly uncomfortable and, eventually, he would expectorate when his body decided it could no longer contain it. This would cause Noah immediate pain but then, afterwards, he would feel more comfortable and - eventually - he would relax.

Wednesday night, Noah developed a fever. He moaned and whimpered through his light sleep and began to experience diarrhea. The mucous expectoration, however, began to lessen.

By Friday, this diarrhea began to morph into something more malicious and sinister. First discomfort and then waves of pain began to proceed and follow his short bouts of pooping. What seems like some sort of extreme cramping in Noah's tummy and lower abdomen brings on wave after wave of excruciating pain for our little boy. He moans, he cries, he begs, he writhes, he thrashes and he screams. The episodes can last from anywhere between five minutes to over an hour. At certain points during the day or night, there doesn't really seem to be any relief from the pain at all.

At first his background morphine was increased and he was given larger boluses every two and then every single hour. This did not take the edge off. Noah would fall asleep in spite of the pain but never for more than fifteen or twenty minutes.

Last night, the dosage was increased and Noah was given a pain pump with a button that could be pressed every fifteen minutes. It was pressed often. By the end of yesterday, Noah had had over 30 diaper changes in a twenty-four hour period. The longest he had slept at any given time was 45 minutes.

He has now been put on a muscle relaxant. This morning, his morphine was switched to hydromorphone in the hopes that the better absorption of this synthetic drug will increase pain relief. The morphine was also starting to make him itchy. And he's been put on another pain killer, the name of which I can't remember.

At the moment of this writing, Noah still has not been given relief from pain. He just spent the better part of an hour crying out in anguish.

The specific cause of this pain has yet to be determined. Most likely, it is the mucositis and this is just the hellish way a severe bout of the infection manifests itself in his little body. An x-ray taken yesterday did not show anything significant which, all things considering, is good. More exploration is supposed to be done today. An ultrasound and additional bloodwork have been ordered for any "just in case" infections or issues.

And all of this comes directly as a result of Noah having absolutely no immunity. His blood counts are at rock bottom.

The day of his stem cell transplant, Monday, counted as "day zero". We are only now on "day plus six". We know that it takes at least five days for the stem cells to begin to "engraft" and, sometime after that, begin to perform the functions of his bone marrow once again. Hopefully, hopefully, we begin to see Noah's counts begin to climb again on or before "day plus ten". But "day plus ten" is still four days away. And days like today or yesterday feel like an eternity. Four eternities seems unfathomable.

While all this goes on, Kim and I continue to take turns watching Noah. Caring for him, being there for him, comforting him, advocating for him and trying to protect him is exhausting and so we sub in for each other when mental and physical resources get thin.

Cruelly, unfairly and horribly, no one is able to sub in for Noah. Not even for a moment.

This is the worst part of it all.

Father's Day

I've received wonderful cards full of love and delightful sentiments from our two older girls. They are such beautiful children and I miss their beautiful smiles, beautiful ways and beautiful hearts. I am blessed to be their father.

But on this Father's day, I am really only thinking about Noah and about the mysterious mixture of blessing and pain that comes from loving children and of loving them deeply.

They say that parenting and loving children is like having your heart outside of your body.

Noah is my son, he is our child and he is God's child because he was born, not out of our bodies, but out of our love for him. And we have poured our love into that little boy recklessly and desperately and without an atom of regret.

And we don't lose the love that we give; we just lose our ability to protect it.

And so we pray that our heavenly father and adoptive parent will protect it for us.

Deo Volente.

Lord willing.