And, we’re all good. It’s been too long since I last updated here. These past couple weeks, I’ve just been exhausted. It is really frustrating to feel so tire. But, I’ve been tired, we’ve been pretty busy, and sitting down and writing hasn’t been a big priority.
I’m sorry for that. These past few weeks have been somewhat challenging for me personally. I’ve been trying to process a lot of emotions, and even though there hasn’t been a whole lot going on with Gabriel, the emotional journey has transitioned for me personally.
Gosh…where did I leave off and what’s been going on. Gabriel has been making good progress since he was discharged from the hospital. Reflecting back on the time Gabriel was in the hospital, it was so amazingly difficult. I hated every moment that Gabriel was there. He was miserable, it was depressing being there. During the time Gabe was in the hospital and after he was discharged, he was struggling. It was essentially a 1-2 punch of things that hit all at once. First, he had the infection, which caused the fever. The doctors are pretty sure it was a nasty little bacteria called Cdiff which is present in all our GI systems. Unfortunately, due to his super depressed immune system, this bug got the upper hand for a period of time. Adding to Gabriel’s battle was the onset of Somnolence Syndrome with was a delayed side effect from the cranial radiation.
These two things resulted in Gabriel struggling to keep food down, not having an appetite, being exhausted, sleeping hours upon hours a day, and just downright miserable. And, all the side effects resulted in him loosing 10% of his body weight in about 10 days. So, once we were discharged, he was still dealing with the Somnolence Syndrome. Gabriel became very weak and just not Gabe. It was a truly difficult time for Chet and I to see our boy sleeping constantly and wasting away. We felt helpless.
But, in the past two weeks, he’s made some great progress. He has started Interim Maintenance, which is the second to last intense treatment phase before he goes into Maintenance. His counts have finally rebounded, and rebounded with gusto. His counts are pretty much like any other healthy person in the general population for the time being…well, they were at the beginning of this week.
Because Gabe’s counts had come back so well, he was able to attend the Fundraiser so generously organized by Eric and Melanie Troska. It was such an awesome event. I need to upload photo’s and share them. It was amazing, and so many of you turned out and made it possible, and it resulted in proceeds which will truly help us with several of the expenses associated with Gabriel’s treatment. I can’t express how extraordinarily humbled and grateful Chet and I are to have the support of friends and family. We love each of you so much and can’t begin to demonstrate our gratitude.
Chet and I are still obsessive about protecting Gabriel, even though his counts were doing awesome. It’s so hard – we’re so scared of him getting sick and we don’t want to delay his treatment with an avoidable infection, so we’re still very cautious. But, Gabe’s been able to get out more, and that’s been a good thing. At least for the time being.
He had his second chemo treatment in this cycle on Monday. They say that the meds can bring his counts down, and we only find out his counts about once every 10 days right now, so we still try to play it safe. So, on that front, he’s doing terrific.
We’re again facing the unknown about potential CNS (central nervous system) involvement. Unfortunately, the hospital here in town where they’ve been able to do Gabriel’s spinal taps and intrathecial chemotherapy treatments has been having problems preparing the slides for the Pathologists to evaluate. So, again we’ve got to have a follow-up spinal tap down in Oakland so that they can look at the cells and make sure there’s nothing funky going on. Chet and I don’t have the level of stress that we had the last time we went through this, but there is still a significant level of anxiety associated with having to go through this again.
The other problem arising out of the inability of the local hospital to properly prepare the slides is that all future spinal taps will have to be done in Oakland, at least for the foreseeable future. So, while we were supposed to have a break from regular overnight trips to Oakland for a couple months, that’s not going to happen. Oh-well. At least we got a couple weeks in there.
So, that’s the update on Gabriel.
Rebeka’s doing amazing – she’s fully engaged in being an active two-year old. Chet’s running. And I’m surviving. I have moment’s where I am struggling finding myself in the experience of life right now. I’ve gotten to the point where I realize I haven’t been taking care of myself – at all. So, now I’m trying to figure out how to find time and motivation to tend to myself. So, that’s my personal struggle. But, I’ve come to realize that I truly need to find another coping mechanism beside eating. I joke that I’m a stuffer – I stuff my emotions and I stuff my face to deal with my emotions, and four months of stuffing is truly taking its toll on me.
Okay, my commitment to you all is to update more regularly. Chet and I will greatly appreciate if you will continue to pray for us. We feel each and every prayer, they give us strength. Pictures and more very soon, right now, it’s time for me to hit the hay and get a bit of sleep.
The Endless Evolution 