Day +20

Something wonderful happened yesterday: Scott came home!!!

Sorry I didn’t update right away – I just couldn’t concentrate long enough to spread the news. Fairly emotional day to say the least.

When Scott’s counts were steadily rising before the weekend, there were rumours that he would be discharged this week, providing a few conditions were met:

– his counts continued to improve,

– he was consuming at least 1000 calories orally, and the feeding tube could be removed,

– he was able to take all of his meds orally, and could be taken off his IV, and

– he could get out of bed and walk around.

Well, give the man a challenge and he’ll get it done. As if engrafting on day +14 wasn’t good news enough, his recovery over the following days even impressed his experienced medical team. They couldn’t have asked for a better scenario, and were genuinely thrilled with Scott’s progress and quick recovery. He avoided serious infection, stayed committed to his glutamine and protein supplements and kept a positive attitude throughout even the worst days. Once his neuts started coming back, his mouth healed really well and he took himself off his pain medication as swiftly as possible. The local infections in his hand and head healed pretty quickly as well. 

The human body is an incredible thing.

Aside from losing all of his hair again, physically Scott does not look like he has just come through a transplant. However looks can be deceiving… He’s very weak, on a truckload of drugs and supplements, and trying to overcome a sparse appetite. Chronic fatigue keeps him resting most of the day.

The first 100 days post transplant are critical. Symptoms of Acute Graft-vs-Host Disease will start to show up, and his suppressed immune system, likened to that of a new babe, is very immature and weak. He will need to be hyper aware of what’s going on in his body, and alert his doctor to any changes or potential symptoms. 

For the next 80 days, any person that visits our home needs to wear a mask. Scott can leave the house but when he does he needs to wear a mask (unless he’s just going for a walk around the neighbourhood). It’s hand sanitizer central, and washing hands and making every effort to avoid spreading germs is paramount. There are strict food safety and preparation guidelines to follow, and a pretty long list of “forbidden foods”. He can’t go in the direct sunlight without covering his skin and wearing SPF 30, and needs to avoid any indoor crowded spaces. He will stay within the region of the hospital so that he has quick access should he need to be admitted, and will attend appointments a few times each week to track and evaluate his progress through recovery.

We may be feeling more than a touch overwhelmed, but one day since discharge were already more confident in how we will manage life post transplant. These last five months have been full of lessons, least of which has been learning how to be adaptable and embrace the unknown. While the next couple months are unpredictable and likely to be littered with moments of anxiety and stress, two things are certain: we will appreciate each day more than ever before, and whatever comes, well get through it together.