The SCID journey: Navigating choices and post-treatment

What was the most difficult part of the post-treatment/recovery period?

The most difficult time period for us was the first 30 days after transplant but before engraftment. Each day, it is hard not to be anxious about what the blood counts would say. Since it is normal for counts to fluctuate up and down before eventually trending upward, it really was a rollercoaster.

During this time, it was hard not to question everything. If we made the right choice in treatment if it was going to work, what would happen if it didn’t work, etc? My mind especially would run wild with the possibilities during this time, and I relied on my husband a lot for reassurance.

By this point in the process, our son was almost four months old and still not in a state he could survive in long term, which was the harsh reality of the situation. We were so beyond ready and anxious to transition out of this state. Once engraftment occurred and we received the positive results of our son’s chimerism, it was the best feeling.

The other difficult period was when we were out of the hospital, but living nearby for weekly appointments. My son and I were living apart from my husband who had returned back to work in our hometown.

Staying healthy post-transplant is crucial, so we were very isolated again. We only left one time a week for his appointment, and the rest of the days I spent inside with him. I found myself missing my trips to the hospital café, talking with the nurses, and having help with his medication calendar and oversight to make sure he was still doing okay. All of that worry was back on me alone instead of sharing it daily with the doctors and nurses.

It took some time for me to build up confidence in my new routine, but eventually, I got there.

What was easier than you thought it would be?

After struggling with being readmitted to the neonatal intensive care unit once we received my son’s abnormal newborn screening results, we were certain adjusting to hospital life would be very difficult for us during and after treatment.

I was surprised by the accommodations that made it easier for us to feel comfortable. Our son had his own closet and bathroom, and we had a bed next to a large window. There was also an amazing volunteer organization at the hospital that added some isolation-safe personalized Disney decorations to his room. It seems silly, but having a place to keep his clothes and to be able to have some cute decorations specific to him made it feel more like a temporary nursery than a hospital room. We are so grateful for that.

The hospital staff and doctors were so amazing and positive and made a point to tell us that we were their biggest asset. They reassured us that we knew our son the best and that they needed us to be watchful eyes and speak up on anything we noticed with him. This specifically made the whole process easier to handle since we truly trusted them with our son’s care and felt that we were a crucial part of his care team.

What was the most unexpected part about your child going through recovery?

Since chemotherapy side effects usually do not present until post-treatment, I was expecting the worst. Fevers from engraftment, mucositis, total parenteral nutrition (TPN), and other discomforts can occur. Because of the reduced intensity conditioning he received, he ended up not getting any of these side effects post-treatment, which was totally unexpected, but a welcomed surprise.

He did, however, have some minor issues with weight gain, vomiting, and transitioning to solids from the months of wearing masks. These few issues were able to be addressed easily at home without extensive intervention.

What do you wish you’d known about post-treatment/recovery?

I wish I had been more emotionally prepared for all of the anxiety I would experience while waiting for engraftment and while adjusting to life outside of the hospital.

After being isolated at home, the hospital, or nearby the hospital for our son’s entire life (six months), it was very difficult adjusting to a more normal life. Returning to work, allowing some visitors, going for walks outside, and all of the little small changes that were now safe were difficult.

Even nine months post-transplant, there are still days where it is challenging to have normal everyday conversations with people because of the trauma, and because we went through such a unique situation that many cannot even begin to understand.

I wish I had been prepared for that and had known beforehand that that is a normal part of coping and trauma

What advice do you have for other parents as their children go through post-treatment/recovery?

My first piece of advice would be to go to therapy. We had people suggest this to us from the start, and we thought we were doing fine considering the circumstances. We were on a mission to get our son better, and we were so focused on that end goal that we did not have time to begin to process everything that had happened until things slowed down around six months post-treatment.

It is important to process and deal with the feelings and trauma that come with having a child with a medical condition because the adjustment to life again will feel different since it is such a unique experience not many in everyday life can relate to or begin to understand.

Our other main advice is to remember that your baby is STILL your baby. You are still new parents with a new baby with all of the same love and feelings that come along with that. Take the monthly photos, focus on the normal developmental milestones they should be achieving – tummy time, smiles, giggling –­ and document them, enjoy them, and remember them because there is no redo.

Don’t let a diagnosis take away all of those beautiful moments that are still the most beautiful! Be determined to still enjoy each day with your new baby and all of the new things he/she will do and accomplish as they grow. SCID is just a small part of their story.