Stem Cell Transplant

This is what living in stem cell transplant looks like.................

Pump upon pump, which are often all running at the same time, delivering various medicines that he needs to get through this portion of treatment as well as constant monitoring of his respiration, oxygen saturation and heart.

Skin scratched raw from a body rash due to chemo that makes sleeping difficult, as the itch is so bad.  (There are spots that look much worse than this, but I can't bear to look at them and don't want to make anyone else do so either)

A "sucker" that helps pull the thick mucusy secretions from Jonah's mouth.  The secretions are from the mouth sores, and if he swallows them, they make him throw up.

We're in the thick of it right now - the expected terrible - that comes with stem cell transplant and the conditioning chemo that came before.  There are a lot of really hard parts right now, but they're all expected - we're living the expected terrible, which is better than venturing into the unexpected terrible, but it's still very hard.  What are the "expected terribles" that we're living through?

* A tip to toe body rash, likely caused by the chemo that had required bathing every 6 hours.  Jonah has such sensitive skin, that in the end, that wasn't enough.  He has been so itchy that he is scratching himself raw everywhere he can reach.  We've actually had the wound care team come consult on a few areas to ensure they don't get infected.  There's not a ton that can be done for the itch either, outside of IV Benadryl every 6 hours (which doesn't really help much) and lotion, so we struggle through to try and keep him comfortable.

* Mouth sores like never before.  We actually can't assess how bad his mouth sores are as he can barely open his mouth.  You can see the sores presence though, as Jonah's face and lips are visibly swollen and his lips yellow and bloody.  As a protective mechanism, the body produces extra mucus to try and help the sores, so there's endless thick mucus secretion pooling out of Jonah's mouth and making his occasional efforts at communication frustrating to him as he's hard to understand.  The pain from the sores requires a morphine drip with an intermittent push button to help cover the pain.  Finding the right pain med and dosage has been a challenge as a common side effect of pain meds is itching, so we've had to work to find the right combination to dull the pain but not make him more itchy.

* A week of fevers.  Jonah has had no ANC (Absolute Neutrophil Count - a measure of your immune system's ability to do its job), so his fevers could be for a thousand reasons.  Luckily, all of the blood and stool cultures keep coming back negative - and that's were the nastiest of nasties show up - but he's requiring IV Tylenol every 4 hours to keep his temperature under control and is on 3 antibiotics to be safe.  He did test positive for a bladder infection called BK Virus, (which makes blood tinged urination painful) but we are unable to treat it right now as there is an oral medication that is required and with his mouth sores he can't take anything by mouth right now.

As you can imagine, Jonah has periods of time where he feels beyond terrible - he'll have a fever, be super itchy, have a painful mouth filled with gross spit/mucus that is making him mildly nauseous  and as caregivers, we're asking him to do things - mouthwash, baths, getting out of bed, etc - and he hates it.  He's like the cool clique at school, and who's "in" and "out" changes minute to minute.  Sometimes we're "not allowed to talk to him" because he's "not listening".  Sometimes the nurse "isn't allowed to take his temperature, only mummy is", sometimes "mummy has to go away" because I'm "mean".  Seeing him so miserable is heartbreaking - we'd give anything to make him feel better.  Sometimes it's exhausting - after 20 minutes of angry tear-filled negotiations on Jonah's part over an ultrasound at 10:30pm or vitals at 3:00am.

Today however, there are small glimmers of recovery.  Today's lab results indicate a very small ANC and Jonah has been interested in listening to a few stories and even wanted to play with a toy for 5 minutes today.  He still requires all his pain meds, the Benadryl, the Tylenol, the 3 antibiotics and the sucker.  He's still hard to understand as he talks through the mucus and he's still fairly grumpy - but there are small signs that we may be nearing the end of this portion of the hard.  The doctor said yesterday that we're almost out of the minefield, but we're still in the minefield.

As we navigate these final steps out of the minefield, we pray for each other as caregivers - as these days are long.  We pray for Noah, Anna & Juila, who are not allowed to see their brother and don't understand why he's too sick to at least FaceTime.  Mostly though, we pray for Jonah's health, both in the recovery from the transplant, but also that this high dose chemo kicked the cancers pants.