amsterdam

Heading Home Soon

It’s taken me a while to write this post – some VERY exciting news – not just because of lack of time while juggling the girls, work, the holidays, etc. But also because, for me, it’s bittersweet.

On January 8th we are heading home to Arizona!

It’s earlier than we expected based upon Keira’s rebirthday/gene therapy date (Oct 2nd, 2020) and how quickly her body has recovered from the chemotherapy. We could not be happier with how well she has done throughout this whole process!

At the end of December she will have her final hospital stay, which will be her 3-month post-gene therapy check up. During this stay, they will do a lumbar puncture, bone marrow aspirate, MRI and remove her central line. Results won’t come in for 4-6 weeks following but we remain so hopeful and positive given how she is continuing to develop. Fingers crossed!!!

The bittersweet part? For me, it’s a few things. Italy now has a special place in all of our hearts for the potentially life-saving treatment Keira just received, the team in Amsterdam that has been treating Olivia is absolutely amazing (she loves them and we will all miss them), but I also dread going back home and facing the reality of Livvy’s very limited future. I know that’s inevitable and we would face it no matter where in the world we are but going back home makes it feel one step closer. It will be time to enroll her in long term care, figure out how we may need to handicap the house for her future needs, schedule in-home PT, OT, etc. It’s a lot.

But as Dave continues to remind me, there are so many positives that will also come along with being home…back in our own house and our own beds, not having to worry about a time difference to talk to family or schedule work calls, Eva getting back to school and life as “normal” despite COVID, etc. It WILL be a good thing for all of us.

And from this point forward Italy and the Netherlands will both hold a special place in our hearts. ❤❤❤❤❤❤❤

Livvy’s 1st Treatment in Amsterdam

After our two-week quarantine, Livvy was finally able to restart the treatments for her clinical trial. Because there is not a site available for this study in Italy, it requires weekly trips to Amsterdam.

I needed to stay in Italy with Keira for her doctor’s visits, so Dave and my Mom took Livvy for her first treatment.

She did wonderful on the flight, had a great first day and took an immediate liking to the doctors there! They even made a welcome sign for her. 😊❤

Because the universe has a funny way of working, Dave soon found out the hotel’s guest services representative graduated from NAU in Flagstaff, AZ and was actually from the same town Dave was born in (Fullerton, California)! It’s truly a small world we live in!

Livvy happened to be wearing her Beatles “All You Need is Love” shirt that day (she loves all Beatles music) and the staff member informed them that this hotel is actually where John Lennon and Yoko Ono spent their honeymoon. He arranged a private tour for them that evening (and I am so bummed I couldn’t have been there for this)! See below for pictures:

The following day was her treatment. We were nervous since it’s a new place for her but they let Dave hold her instead of laying on the hospital bed and she did really well!

In a few hours they will be en route back to Milan and will all have to take COVID tests in the morning to ensure Keira’s (and everyone’s) safety before she is admitted to the hospital on Friday.

Dave did note that because the COVID-19 levels are so low in Amsterdam that the schools have all reopened and masks are not required. 😳 Amazing to hear of that kind of progress when things are still so scary in other parts of the world.