Headed into yet Another infusion
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Castillote family
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Castillote family
Infusion #159 (almost two weeks ago) did not go as we had hoped for Malachi. Post-infusion, he ended up back in the emergency room, which meant stopping his brain infusion flush, undergoing another emergency CT scan, and hours of observation. Thankfully, over time things stabilized—but it wasn’t until the very early morning hours that we were finally able to make it home.
We had no desire to stay in a hotel or at someone else’s home. We just wanted our own space, our own beds, and a sense of normalcy. That’s when the crash happened.
The past 12 days have flown by. The first six days at home were spent doing absolutely nothing—sleeping, eating, watching movies, and repeating. Our bodies and hearts needed that pause. Slowly, that rest turned into unpacking, reorganizing our living space, making room for even more medical supplies, and adding just the tiniest hint of the holidays into our home.
After 35 days, our boy finally made it back out into the community for a few hours—his first time since November 7th. Fresh air, conversation, and a small taste of life beyond hospital walls. It was sweet, but short. Malachi continues to struggle with headaches, bouts of pain, deep fatigue, cognitive and memory issues, poor appetite, and tremors.
Today, we’re back to packing all the things—times two. Our state is facing catastrophic flooding: freeways shut down, traffic at a standstill, homes and land lost, families in crisis… and now snow on top of it all. We’ve been watching the weather closely, trying to determine the safest window to travel so we can make it to Infusion #160 for our Batten’s-fighting kiddo.
So we’re packing early and heading near Seattle Children’s Hospital once again—for yet another infusion and yet another unknown of how Malachi’s body will respond. We’ll be staying close this time. We are worn down, truly. And with the holidays upon us—no, it’s just not happening this year. I can’t subject myself to that added level of stress. We already have more than enough on our plates.
Our hearts are with OUR family we can' be with this holiday & the families impacted by the flooding and weather devastation. From the deepest place in our hearts, thank you to everyone walking alongside us—those who have donated, supported, helped, brought meals, delivered items, or simply prayed and/or reached out. Your love carries us more than you know.
Merry Christmas & Happy New Year 🤍
We had no desire to stay in a hotel or at someone else’s home. We just wanted our own space, our own beds, and a sense of normalcy. That’s when the crash happened.
The past 12 days have flown by. The first six days at home were spent doing absolutely nothing—sleeping, eating, watching movies, and repeating. Our bodies and hearts needed that pause. Slowly, that rest turned into unpacking, reorganizing our living space, making room for even more medical supplies, and adding just the tiniest hint of the holidays into our home.
After 35 days, our boy finally made it back out into the community for a few hours—his first time since November 7th. Fresh air, conversation, and a small taste of life beyond hospital walls. It was sweet, but short. Malachi continues to struggle with headaches, bouts of pain, deep fatigue, cognitive and memory issues, poor appetite, and tremors.
Today, we’re back to packing all the things—times two. Our state is facing catastrophic flooding: freeways shut down, traffic at a standstill, homes and land lost, families in crisis… and now snow on top of it all. We’ve been watching the weather closely, trying to determine the safest window to travel so we can make it to Infusion #160 for our Batten’s-fighting kiddo.
So we’re packing early and heading near Seattle Children’s Hospital once again—for yet another infusion and yet another unknown of how Malachi’s body will respond. We’ll be staying close this time. We are worn down, truly. And with the holidays upon us—no, it’s just not happening this year. I can’t subject myself to that added level of stress. We already have more than enough on our plates.
Our hearts are with OUR family we can' be with this holiday & the families impacted by the flooding and weather devastation. From the deepest place in our hearts, thank you to everyone walking alongside us—those who have donated, supported, helped, brought meals, delivered items, or simply prayed and/or reached out. Your love carries us more than you know.
Merry Christmas & Happy New Year 🤍
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