We are making it through the consolidation phase of Gabriel’s treatment, and we’re at a low, so to speak.
The consolidation phase of treatment involves two cycles of various drugs. As I believe I’ve previously talked about, Gabriel is part of a clinical study, and he was randomized to an arm where he is given a newer drug, nelarabine, which is expected to be more effective at eliminating the leukemia cells in his body. In addition to the nelarabine, he gets other chemotherapy drugs, which unfortunately decimate his immune system. Right now, we’re at a very low point in his treatment. Essentially, the kid does not have an immune system right now and I hate that. His red blood cell counts and platelet counts are also pretty low and he’ll probably have yet another blood transfusion next week.
And Gabriel, subconsciously, showed us what he thinks of cancer.
The past two weeks involved two interthical chemo treatments as well as a blood transfusion last week. Gabe also got my least favorite med, also known as Peg in the Leg. Fortunately, this time around he was given the shots while he was under anesthesia for his spinal tap.
Okay, funny story. Once Chet and Gabe got home from his last spinal tap, etc. Gabriel went potty and says “WHAT IS THIS?” “PRINCESS BANDAGES!”
So, Wednesday we headed back to the Bay Area for the start of Radiation for Gabe. Honestly, from a parents perspective, radiation was rough. I don’t know whether it’s just the term “radiation.” Or just knowing that we’re having to do so many horrible awful things to our child in order to get rid of this cancer. I hate it.
A few weeks back Gabriel got his mask made. Now we see the mask in full action for his radiation. The purpose of the mask is to keep his head in place consistently between treatments so that they can perform the radiation precisely.
Once they get the radiation mask in place, Gabriel was such a trooper and just stayed so still for all the procedures.
It’s amazing how the process works. The machine is amazing and the whole experience is overwhelming. Once Gabriel was placed, we had to wait outside the room for them to do the treatment.
But it was nice to be able to watch him from the video monitor.
After Gabe’s radiation treatment was done, the weather was beautiful and we headed out to do some sight seeing. First we drove over the Bay Bridge to San Fransisco. We were just driving around and found this awesome overlook of the TransAmerica tower.
After we headed over to the Golden Gate Bridge. It was nice to get out and look around a bit.
Gabriel wanted to hike down to Fort Point, so I took the car and drove around to meet them down at the bottom of the trail.
Got some family pictures.
Yesterday was a bit more of the same with respect to the radiation. We did some sight seeing and went out to Alameda to look at the retired ships and showed Gabriel the USS Hornet. He wanted to take a tour of the ship, and we would have loved to. But his counts are just too darn low and we can’t risk him being around other people and the like.
It was a pretty rough day yesterday in a lot of ways. Gabriel is finally showing his frustration with this process. Sadly, it’s coming out in his behavior with us. Chet and I often feel as though we’re at the end of our rope. We hate having to tell him “no” about doing things that we should be able to say “yes” to. It sucks having to keep him isolated and away from friends. He misses playing with his friends so much. The other day all he wanted to do was play with his friends from school or Sam and Julia, and we have to tell him “no.”
The poor kid is just so isolated, yet he really has handled all this so well. But, he is definitely demonstrating his breaking point with his caregivers, Chet, his grandparents, and me. It’s such a hard experience as a parent, but just because he’s sick doesn’t mean the rules have changed.
We are looking forward so much to the next phase of treatment where Gabriel will be able to get out and do things with friends more. But, until then we have one more round of nelarabine, cytoxin and ARaC before his counts will come back for a period of time. Until then, we are trying our hardest to keep things real for him.
The isolation isn’t something you can prepare yourself for, nor is there any way to prepare you child for it. And even though it’s only for a few months in the grand scheme of life, these are the important years for him for social development, making lifetime friends, and establishing those relationships. And he can’t do it right now. Frankly, it breaks my heart.
We’ll do our last radiation treatment today and then head home for the weekend. It’s going to be an adventurous ride home with all the rain and snow. Chet and Gabriel will be heading back here next week for more radiation. Fortunately, once this is done, we’re done. No more radiation for Gabriel. Thank God for that.