Efos / Itop Cycle 1

It’s a completely different experience doing chemo here. I’m guessing that’s true no matter where you go. Check in was fast and efficient and we were guided into a very tiny room with walls that didn’t quite reach the ceiling and a curtain for a doorway.

Liam has so much gear. Our first Uber driver actually canceled on us and the second looked shellshocked. I try to tip them enormously; they’ve all been so kind. But never have we had so many things. A big suitcase with things for our stay, a slightly larger than carryon size suitcase with the limb lengthening device, the big heavy CPM machine, two backpacks, the wheelchair, and crutches. Adam helped me get everything downstairs and he and the driver loaded while I got Liam in the car. At the hospital we piled everything on the sidewalk until the people at the door could come help.

Our room was so tiny she had to pull a chair out of it just to make room for everything.

Surprisingly, Liam had no anticiapatory nausea. The hospital doesn’t smell like typical hospital here. I’m so curious what the difference is; but our child life specialist agreed when Liam talked to her about it. That helps significantly. The OR floor smells like an OR floor, but the regular floor doesn’t smell like the regular floor at other hospitals.

Usually he shuts down the instant he walks in the door. He won’t smile. Doesn’t want to carry a conversation. He won’t eat until his chemo is about 24-48 hours in history. This time, he was already finished with his first Etoposide and we were in the middle of Phase 10 when I said, “You are doing so well.”

“Oh but they haven’t even hung my chemo yet.”

Umm, yes they did. These chemos are clear. It’s just a mind thing, but somehow they look less sinister than the awful red and yellow doxyrubicin and methotrexate that look like the poison they are snaking into your body.

He ordered and ate lunch. I was dumbfounded.

Not long after the bed was ready and he was admitted. To my shock he tolerated getting up and riding over in the wheelchair. That afternoon about an hour before his Itoposide finished he got really sick. We tried a few more drugs and the second one worked. By evening he was much better!

On Day 2 we gave him the hydroxyzine between his chemos and had zero nausea. Did you hear that? ZERO. I almost cried. After months of hiding in the bathroom to scarf down a few bites or just not eating so that he wouldn’t see or smell food, I could not believer it. I always ran a diffuser with orange, cinnamon, and vanilla to help the room smell better and it made everyone comment on how good the room smelled. Unfortunately, some people added that it smelled like someone was baking and even that was enough to produce immediate vomiting. Once we even had to put a sign on the door for no one to mention food in any form.

My heart just exploded with gratitude! No one can take away the fact that he’s getting infused with extremely toxic drugs, but at least he doesn’t have to suffer from the debilitating nausea that goes with it. It was an enormous gift to have him feel well enough to play games and eat.

Because he was doing so well, we decided to switch to outpatient this cycle already.

Thankfully David arrived super late Thursday night so he came and picked us up Friday night. Liam went home with three backpacks of IV fluids and meds. It was incredible!! He also got his first shower since December 17!!! We had to be so careful because his port was accessed and I still didn’t want to spray water directly on his incision. But he sat on a shower chair and I sprayed his back and as much of his body as I could. His face! It felt so heavenly to him to feel that water hitting his back!

We ate garnachies …. all seven of us around the table. Oh the gift of it!

We’ve never been a gaming family, but with Liam glued to his CPM, he has few options of activities. His brain is still not quite ready for reading and he has so many hours to pass. My brother in law who loves flying gave him an RC game and when our former neighbor heard about it, he bought him a gaming computer. David brought them with him from Virginia. Liam was overjoyed! I think his hours are going to fly by.

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