Seeing the Girls Together

It didn’t hit me until I saw it in front of me. All three of our girls sitting next to each other at the table (and Livvy doing so semi-independently). This was something I never knew I would get a chance to see. And it was amazing!

I never thought I would see this day because I never thought of Livvy being able to sit independently without one of us helping.

While her weekly treatments in Amsterdam may be helping her stabilize somewhat her disease is still progressing and she is still losing abilities. She can’t sit in a chair on her own because she can’t hold herself up. She can’t sit in her stroller to eat because she can’t bend her body at a 90-degree angle to sit in it comfortably. So every day, every meal, one of us has to hold her and feed her while we eat as well (or we take shifts eating).

But now that she has her customized stroller/chair (a Zippie Kids Xpress from Sunrise Medical), she is learning to get used to that and it has been a game changer for all of us.

To see the girls together and to know that there will be many more days of them having this time together (where Livvy can feel like a big girl sitting on her own), is priceless.

I was so in awe during the moment that I took only one picture. 😍🤦‍♀️❤

41 Days to Freedom

Yesterday, as my Mom and I were getting Livvy ready to head to the hospital and get fitted for her new customized stroller/chair, Dave video-called right as the doctors came in Keira’s room and said her neutrophils were up to 2,000 (from 200) and they could head home!

41 days in isolation, 4 days of chemotherapy, gene therapy treatment, daily blood draws, and a constant rotation of medicines had finally come to an end. We were beyond ecstatic!

While it was a bittersweet day with Livvy getting her new stroller (her body can no longer bend properly to be comfortable in a normal stroller), having a healthy Keira come home was truly a wonderful thing; a miracle really.

Eva ran up to us at full speed as we walked in the door and yelled “Hi Baby Girl!!!” to Keira.

From personal experience weeks earlier, I knew the joy and sense of freedom that comes with leaving the box and being at home. But now being on the opposite end and having Dave and Keira come home was…just an overwhelming sense of happiness and like everything was as right in the world as it could possibly be for us at that moment.

After bringing them home, my Mom and I walked to the store to get a few things for dinner. I had chills the entire walk. Not because it was cold but because of that feeling; our family was finally together again after 41 days apart.

Our lives are an emotional rollercoaster to say the least but we could not be happier to have everyone under the same roof as we head into the holidays (and a potential lockdown in Milan).

The girls were all so happy to be with each other again and so were we! ❤❤❤❤❤

Halloween in Milan

Halloween for everyone was a little different than normal this year, but it was especially so for our family.

While kids do dress up here in Italy, there isn’t trick-or-treating or big parties like how people celebrate in America. And finding a pumpkin? Forget it. We did manage to find two at completely different stores though, one of which cost 27 Euros. 😳 Definitely the most we have ever paid for a pumpkin but worth it to make this seem as close to the normal holiday as possible for our girls.

Last Halloween, Eva had already decided on our group costume for this year: pirates! ☠ So we got everything ordered once we got to Italy. The 5 of us were pirates, my Mom was a pirate’s parrot and my Dad was Captain Hook’s croc.

To replace the absence of trick-or-treating we had to get creative. So I made a treasure map that would direct Eva to various X marks the spots around the apartment where she would find buried pirate treasure.

Livvy can’t participate too much but we carried her around for as long as she could go. She also hates getting changed (she has lost most of her arm control the past few months) so getting her in and out of a costume is a challenge and she did not want to be in it for very long since it was a hotter fabric. But we made sure she still got some smiles in, and enjoyed a little chocolate candy too.

Dave and Keira also got dressed up at the hospital, and the nurses and doctors loved it!

After the treasure hunt was over, Eva declared it the best Halloween ever! 🤗 And now, she is already working on our costume ideas for next year.

Happy Halloween from all of us to all of you! Hope it was a safe and happy one for everyone! 🎃💜☠

Day 32 in Isolation

Dave has officially settled in at the hospital and Keira is as happy as can be! She hasn’t needed a transfusion (for hemoglobin or platelets) in five days, which is amazing, and she is well on her way to a quick recovery – albeit with 50% less hair. We are so relieved she is doing well and back to eating and drinking on her own. Her weight has also stayed steady, at around 10.6 kg, this whole time, which was something I was concerned about when we started this process.

Today, the doctors said if her neutrophils rise as they should she may even get to come home next week! Yay!

Meanwhile, on the home front, we have had a busy few days with Eva and Livvy and I have loved it!

We ate lunch outside at one of our favorite restaurants, made origami hearts and Halloween decorations with Eva, played dress up with Livvy, went for a walk to see all the fall leaves and horses that live next door, completed a puzzle with Eva, walked down the street to wave at Dad and Keira in the hospital room, played at the playground, and danced in the rain!

Switching Out

I may have mentioned that when we first planned on Keira’s stay in the isolation room for 40+ days that Dave and I planned to switch out each week. Well, thanks to COVID-19, this was one of many things that had to change.

Thus, my staying for the first 4 weeks until Keira was past the mucositis phase, when her immune system would be at its weakest. Now that she is past that, recovering well and Dave passed his COVID test, we were able to switch.

Being outside, walking around without a time limit, felt so weird and so wonderful at the same time. That smile under mask didn’t fade the whole walk home, thinking about seeing my girls.

While I am having trouble even wrapping my brain around not seeing Keira in person for the next few weeks, I am beyond excited to be with Eva and Livvy, who I have missed SO much! Giving them hugs in person literally brought tears to my eyes today.

And I know Dave was so happy to see Keira. And vice versa, once she realized the masked man with the longer locks was her Dad. 😆

Never when we first heard the words Metachromatic Leukodystrophy would we have imagined our lives would lead us here. But we are so grateful it has. This journey has not been easy and we know the road ahead won’t be either. But these gorgeous faces make it all ok, and we will always do everything we can to keep them smiling.

Here’s to hoping these next few weeks fly by! We miss Dave and Keira already!

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.

Week 1 in Italy

Week 1 is done! We all (eventually) got over jet lag, Keira has been a trooper through all of her pre-screening tests, Eva has met many animals in the lake, and Livvy went on a swing for the first time in a long time and loved it!

Keira’s Treatment:

The entire 1st week at the hospital was all about pre-screening tests to ensure everything came back normal and that there were no signs or symptoms of MLD (Olivia didn’t start showing symptoms until around 18 months old).

It started with a neurology and physical therapy evaluation, followed by audio/visual tests, an EEG, an EKG, an echocardiogram, an MRI, bone marrow aspirate and blood work. As well as meetings with the doctors to go over each test and the upcoming gene therapy treatment.

She handled it like a champ! She LOVES all the amazing nurses. And so far all tests are coming back great! 🤗❤🙏

Eva & Livvy’s Week:

What a change this has been for all of us, but as the oldest of our kiddos 5-year-old Eva has had the biggest transition. She doesn’t really get why we are living in a hotel currently and not in a home but is enjoying walks around the lake, has named the swans (Flute and Toot), and loves feeding the turtles and Koi fish. She also still joins her Kindergarten classmates at home via Zoom when they log on for their morning meeting (which is usually around dinner time here).

Livvy has regressed quite a bit in the past month and can no longer walk with assistance or crawl. Her speech is also limited to words like “Hi” and “ya.” So for her it’s all about sitting and playing with her sisters, us holding her and having dance parties in the room and laughing at her big sis while she feeds the animals in the lake. Despite her limitations the smiles keep coming and that’s what keeps us going!

Another major blessing is having my Mom and Dad here with us. It would be impossible without them! And it also helps give the girls another sense of home and normalcy that we are all here together. ❤