You hear was the wind being suck out of our sails this week. Gabe was scheduled to start maintenance Friday, yesterday.
No, he didn’t start maintenance yet.
Wednesday we spoke with Connie, the nurse practitioner who we deal with a lot at Children’s Hospital Oakland, and his counts had barely come up since Thursday last week. Gabe’s ANC has to be at least 750 in order for him to start maintenance. As of Tuesday, he was a little over 300. He was just very slowing coming up, and that meant there was no way we’d make it to maintenance as scheduled.
I was crushed. I am so ready to make it to maintenance. It’s like this line in the sand that once we make it to there, we can begin to have a normal life. We will no longer be hostages. Gabe will ultimately be able to go back to school. We can go to stores as a family. We can go to movies, eat out at restaurants – have a normal life.
Chet and I had started making plans for this weekend. We were planning a nice weekend as a family, camping, going out for at least one or two celebratory meals. We were going to be like a NORMAL family. Chet and I got our hopes up, even though we knew were shouldn’t. We couldn’t help ourselves.
So, when Connie’s call came in, it sucked. My heart just felt so let down. Not by anyone in particular, not by anything. I was just so incredibly disappointed.
What’s silly is that it’s not like we are put off that long. We’re probably going to make it next week, but we’ll have to see. What’s a week? What’s two weeks? Really, in the grand scheme of things, it’s nothing. But, when you’re so tired of life being a constant unknown. When every day presents a new uncertainty, the concept of maintenance is so alluring. You just yearn to be there.
Admittedly, a lot of the “romance” of maintenance at this point is unrealistic for us. We know that the first several months will be filled with a lot of tweaking to get the daily and weekly medications right so that Gabe’s counts stay stable. We know that there’s going to be a lot of adjustment. But, we’ll be in the coveted phase “MAINTENANCE.” That in itself will be huge.
So, tonight, we were supposed to be camping, Gabe, Rebeka, Chet and I. We were supposed to have had fresh seafood. We were supposed to have gone hiking. We were supposed to have been celebrating.
Instead, we’re chilling as a family enjoying the bounty of our garden. We’re harvesting, canning, and preserving. We’re following our advice “keep on keeping on.”
We’ll know next week where Gabe’s at and whether we’ll be able to start maintenance next week.
Most importantly, we know that God wants us right where we are at. We’re content with that. When it is time for Gabriel to make it to maintenance he will. All along this journey, Gabe’s cancer treatment has been in His hands. And so far, He’s been doing a pretty amazing job, so who are we to question where we are at.
On a side note – I mentioned today we’ve been harvesting. This was one of our purple cauliflower’s that we grew.