We interrupt your regularly scheduled programing to bring you this virtually live update.
I was going back and forth trying to decide whether to finish up the “Whole Lot of Catch-Up” series or to actually talk about stuff that’s happening now. And, well, I’ve decided to provide a live and real time post. Besides, most of the rest of the catching up involves Chet’s running…and that can wait, right? Absolutely, so the updates on Western States and the Tahoe Rim Trail will come in due time. Besides, I’m still trying to compile pictures for those posts. I’m chronically bad at getting pictures at Chet’s running events anymore.
As I’ve previously mentioned, Gabriel stared delayed intensification at the beginning of June. That involved several weekly doses of the “Red Devil” a.k.a. Doxarubacin. He tolerated the treatments remarkably well as his counts did not drop as we expected. In fact, they didn’t drop hardly at all through all three of the treatments, which meant that Gabriel was able to be at the finish line at Tahoe Rim Trail, which was a pretty nice thing.
So, given the fact that his counts were holding steady, imagine our surprise last Tuesday when I called down to confirm that all systems were “go” for starting Nelarabine, the next phase in delayed intensification. And, we were told that his counts were super low (344). If you haven’t been privy to my detailed explanations of ANC counts or you’ve forgotten, you can get a refresher here. We were pushed off a week, until today, assuming his counts were high enough (he has to be at least at 750 to start the next round of Chemo).
But, the flip side of Gabe’s next Chemo being pushed off was that we were all home together over the weekend. And, this was the first weekend in weeks, no, months, that we haven’t had something going on. Earlier in the week, after finding out that Gabriel wasn’t going to be in the hospital over the weekend, I had thought it would be nice to get out for a drive as a family, like around Lake Tahoe or something like that.
Saturday morning after cooking breakfast, putzing around the house and just generally being lazy, Chet suggested that we go for a drive. My response was, let’s go. We loaded up the car with more crap than we’ve ever normally loaded for just a drive. But, life isn’t like it used to be. So, now we are loaded with the “kit” Chet’s prepared which includes supplies to do a flush of Gabriel’s central line if necessary, red top wipes (hospital grade sanitizing wipes), Clorox wipes, paper plates, plastic silverware, paper towels, zip-lock bags, hand soap, and more. We loaded changes of clothes for both kids, blankets, food, drinks, and yes, eventually the children.
We decided to head out and drive over Ebbetts Pass (CA HWY 4). Just a couple miles before we got to Markleeville, CA, in an open field, Chet spotted a Mamma Bear and three cubs.
Unfortunately, I wasn’t able to get a better picture. But, there they are in all their glory. We spent a while just watching the bears up in the field.
Ultimately, we continued on our way, but not without stopping for some pictures of one of our favorite roadside sites along HWY 4.
There’s just something cool about this old homestead long the highway. Then there’s the old trailer, which is a converted bus. It’s one of those things that just begs for pictures to be taken of it.
After the pictures, it was time to continue on. We stopped at Bear Valley to grab some sandwiches for Chet and I to eat for lunch. While Chet was in the deli, I whipped up some PB&J sandwiches for the kids. Rebeka inhaled hers, only to be promptly puked up just as soon as we got back on the highway to head toward someplace to stop for a picnic and to let the kids run around. Ahh, thank goodness Chet loaded the “kit” because we had sufficient supplies to do an emergency clean up. And, fortunately, I had packed extra clothes, so after a swift wipe down (Chet also packed the bath wipes from the hospital) and change, we were back in business.
While we were looking for some place to stop for lunch, we came upon Calaveras Big Trees State Park, and decided on a whim to stop there. Chet and I have often talked about stopping here, we just never have. So, this was the time and it was a very good decision.
We stopped and enjoyed lunch under the canopy of cedar and oak trees.
Rebeka was telling us some story here.
Gabriel was being overly dramatic about God only knows what here.
The kids got together for a picture, and it was completely amicable, I promise that Gabriel isn’t trying to choke Rebeka here. They were having a great time just running around and exploring.
Chet and the kids walk along a large fallen tree.
After a nice lunch, we decided to go to the South Grove and check out the Giant Sequoia trees which are the main attraction at the park.
We headed out for the 3.5 mile hike to view the groves and it was the most worthwhile adventure. We saw hardly anyone out there and the kids enjoyed their trek. Gabriel hiked the entire 3.5 miles and Rebeka did at least 2.5 miles of it, if not more. It was awesome, the kids had a blast, Gabriel was so excited to be out there and Rebeka was beyond filthy by the time we made it back to the car, which made me appreciate the second change of clothes I threw into the bag.
Rebeka balancing on a log.
Beautiful big trees.
Amazing burl or stump, or as Gabriel named it, “the brain.”
She’s only hardly filthy in the picture.
One of the first Giant Sequoia we saw.
Gabriel approaching the base of the first Sequoia tree.
One of the larger Giant Sequoia’s we saw.
A little perspective as to the scale of the tree.
Inside an ancient hollow Giant Sequoia.
Getting out, hiking with the kids and just enjoying life was such a refreshing change. It’s something that we’ve truly needed and I’m so grateful that we just decided to hit the road. As I said to Chet somewhere along the hike, the $8 entry fee was the best eight-bucks I’ve spent in a very long time. The kids had an amazing time, I had an amazing time and it was just awesome.
So, after we enjoyed a weekend as a family together, we were mentally gearing up for this weeks hospital admission. Again, we were surprised yesterday to find out his counts were still too low. He was only up to 610. Again we were pushed back for the start of Nelarabine, until hopefully Friday of this week.
We’ll find out tomorrow to find out whether we’re on for the this next round of Chemo. Chet and I are so anxious to get this show on the road. Once we start Nelarabine, we start the clock to maintenance, a point in Gabriel’s treatment we are all to anxious to get to. The difficulty with this phase of the treatment is that we’ve been able to feel somewhat normal, but not able to fully relax due to the fact that we never know were we are at in terms of Gabe’s immune system. There’s a lot of uncertainty and associated anxiety. We’ve tried to live a normal life, but no matter how close to normal we try to get, we just cannot dismiss the fact that we’re not there yet.
We have this hope and expectation that once we get to maintenance, low ANC counts will be few and far between. At that point, Gabe will be able to start back at school. We’ll be able to have a bit more of a normal social life as a family. Life won’t be constantly in fear of an infection. Now, in reality, Chet and I both acknowledge that our expectations are probably a little inflated at this point in time, but hopefully we’ll get there in time.
Until then, we just continue looking forward. All will come in due time, and we are working on exercising patience and discipline.