Gene Therapy Day 1

Since we arrived in Italy it was like a weight had been lifted off my shoulders. We made it. Keira would have a chance at a normal life and all will be well.

A few days ago, however, I was a nervous wreck and my stomach was in knots. Livvy hadn’t been doing well and Keira’s admittance into the hospital was just around the corner.

There was A LOT to do to prepare for this extended hospital stay, where we would be in an isolated, sterile room for 40-60 days.

A panorama of the room. The little couch pulls out into a bed for whichever one of us is here and there is also a big closet (not shown) to keep our things.

All clothes brought into the room needed to be washed with special detergent and put into ziploc bags to prevent germs and infections getting in. All clothes also needed to be changed every 24 hours and not used again until rewashed which means for one week you needed 7 pants, 7 shirts, 7 pairs of underwear, socks, etc. We needed to buy padlocks for the lockers in the common area, shoes that were able to be washed that we could ONLY wear in the isolation area, face masks, unopened items like toothpaste, toothbrushes, handsoap, etc. And the only food/drink that could be brought in had to be pre-sealed. Anything opened must be thrown out within 24 hours even if it keeps just fine in the fridge provided. And that’s not even all of the guidelines.

After getting everything ready to go this morning, my parents, Dave and the girls walked us to the hospital. A surreal moment, knowing what was ahead.

We said our goodbyes, gave hugs and kisses and got checked in.

While I forgot one or two things that Dave will have to bring for us, I’d say we did pretty well.

Now, we are settled in and officially starting Keira’s gene therapy treatment!

The first day was easy. They did bloodwork, cleaned and redid the bandages surrounding her central line, and gave her a few medications, along with liquid through the IV that goes to the central line.

Every time she drinks milk we also have to use a swab dipped in a specific formula, followed by a droplet of another liquid, to clean her mouth and prevent any mucous build up or infection.

Tomorrow, we start 4 days of chemotherapy. This is in order to breakdown her immune system and make room for the new genes that will be given to her on Friday (other MLD families call the gene therapy day their “rebirthday” since this is essentially the start of their new life without the terrible symptoms of MLD).

While we are beyond excited for that day, chemotherapy is scary. Especially for the Mom of an 8 month old. The usual side effects that accompany chemotherapy can also effect her (hair loss, mucositis, etc). And from what we hear from other families, the mucositis is the worst of them, as the pain in their mouths may prevent them from eating normally for up to two weeks. After that, it sounds like they bounce back rather quickly.

While we know the “plan” for these 40-60 days, I’m sure we will have our ups and downs. But as I told my friends, “eyes on the prize”. In this case we have to focus on the destination more than the journey. We have seen the results that this treatment provides for other children and are beyond grateful to be able to give this chance to Keira. ❤

5 thoughts on “Gene Therapy Day 1

  1. You are all amazing, this is all so wonderful too!! Keira is the star, she is unbelievable. Prayers abound for success for this treatment and minimal side effects, strength for all of you. Love these updates and pictures, we all care so much….sending our love Uncle Jim and Aunt Judy


  2. We are so grateful for this treatment. prayers for Keira to stay strong and to give you all strength you need to get through this difficult time love and prayers to you all


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