Making it

A week ago today, we finished our 4th round of high-dose methotrexate. Ev has one more chemo med to take this evening and then we are done with the interim maintenance phase. Being in the hospital so often these past 2 1/2 months left me feeling confused as to where to call home. Our desire is always to be at home, but the hospital has become familiar and with that comes a comfort. And, thankfully, the last two visits went smoothly.

Ev still thinks we will be going back any day now. As I get him dressed for the day, he tells me that he doesn't want to go to Riley. To my great joy, I have been able to tell him we are not and that we get to see family, take brother to school or go to the store. He will tell people that he gets poked at Riley, and that seems to be his greatest reason for not wanting to go. (As a mother, I can handle this fear of his and not be overwhelmed by it. A poke is so small on the scale of what he has and continues to go through.)

The other night, Jeff and I were asking the boys in which state they were born. Ben says, Vermont and Ev says, Riley's. It was a good laugh for all of us.

In a weeks time, we will begin the delayed intensification phase. This is the last big hit before the much longer maintenance phase. So, from the second week in December to the first week of February Everett's immune system will get annihilated (assumably). My goal is to do the best I can to keep him out of the hospital. When and if his ANC reaches the low digits or 0, there's nothing I can do.

I can't control any of this, but I can still do something about it. A confusing statement, but very accurate. So, we will figuratively board up our windows and doors and stay away from civilization as the Oncler from The Lorax did. But, please don't pity us for it, we are happy, alive and thankful for where we are and the victories that have been won. Ben will still go to school and we will still be able to see family.

So, we will see what comes of these next few months.

Ev was Captain America for the entirety of our last visit. This also means he slept in his hat/mask.

When we walk around the hospital, Ev has to wear his mask...there were so many people that recognized him as Captain America that when we got back to his room he didn't take it off for a couple hours. 

Always delays, but he's OK

Ev's immune system was not ready for last weeks round of chemo, so we got to have Halloween at home. Jeff and I took the boys around our neighborhood and they didn't have to work hard for a bag that was so full they could barely carry them. There are perks to a neighborhood with not many kids, but tons of adults wanting to be a part of the fun celebration of pretend play and yummies.

This past Tuesday we were admitted for Ev's 3rd round of methotrexate (etc.). He had a spinal tap that day as well, which left him with nausea...and a Spider-Man mask. He didn't even mind feeling sick...he was Spider-Man! The mask was either on top of his head or on his face for the rest of the day...

Ev's body is already clearing the chemo very well, which pleases mommy! And, apart from a few discomforts Ev has felt great and has been able to show off his super hero moves and his painting abilities. After this visit, we have one more round and then we will be on to the next phase, which promises to be a break in comparison to the last 5 months. 

I am so blessed and thankful that I get to be here with him the whole time (not every child has that luxury and it breaks my heart). Thank you to everyone who has helped make that possible!