It has been far too long since our last update. As I briefly mentioned, our former computer started giving us the dreaded blue screen of death. So, deathly afraid of firing it up, it took Chet and I a few days to identify and pick up new hardware. As you have probably surmised, we are back in business.
Shesh, so much has happened in the past week, I don’t know where to start. Frankly, right now, I don’t even know where I left off. So, let’s do a recap.
Last Wednesday, Chet and I headed to Oakland for two appointments. The first was with the radiation oncologist who will likely be doing the radiation treatment on Gabriel. Man, what an incredibly nice guy. We have met so many wonderful and nice doctors, so for us to say that he really has been the nicest guy so far is saying an awful lot. It was a great meeting with him. Gabriel will be getting 8 days of radiation treatment during this block, consolidation, of his treatment. Since they don’t do it on weekends or holidays, Chet and Gabriel will have to be down for 5 days, come home for the weekend and then head back down for three more days.
The real bummer about the radiation is that it is really a very short treatment, less than 20 minutes a day. So, Chet and Gabriel will be spending almost two weeks in Oakland for less than a total of 8 hours of appointment time (clinical time included in there). And, since it’s all out patient, well, you get our drift – it’s mighty inconvenient. But, it is what it is. Gabriel only has to have radiation treatment once during his entire course of treatment, so it’s not that much time in the grand scheme of things.
Then on Thursday we had the big pow-wow with the Oncology docs to talk about the clinical trial Gabriel is in. Here we discussed the potential issues surrounding Gabriel being a part of the clinical study in detail, discussed the various arms that he might be a part of. Through the course of the conversations we were informed that Gabriel is classified as intermediate risk (within the disease), which is pretty good. Ideally, he’d be classified as low risk, but due to the fact that his white blood cell count was off the charts when he was admitted along with the fact that when the did the first lumbar puncture and analyzed his spinal fluid they saw some lymphoblasts (but not necessarily leukemia) he’s an intermediate risk. They don’t believe he actually had leukemia in his spinal fluid at the time of diagnosis, as it appears that the lyphoblasts were likely found due to contamination from the tissue they had to pass through to get to the spinal fluid, but they can’t say with 100-percent certainty that it wasn’t there either. So, it is what it is. We are so grateful and blessed that he wasn’t classified as high risk, which is where he was at when he was diagnosed. So we’ll take whatever good news we can get.
So, with him being classified as intermediate risk, there were four potential treatment arms. Without going into a lot of techno-speak, I’ll just say that at the end of it all, Chet and I decided to take the roll of the dice and have him randomized into the clinical study. He was randomized to arm “b” or the second arm – basically the conventional treatment of ALL T-cell with the addition of a new drug, nelarabine, which has been specifically developed to treat t-cell ALL. The plus side of this is that the doctors hypothesize that nelarabine will be more effective at eliminating the t-cell variety of lekemia from the body than the standard treatment, which is the purpose of the study essentially, well along with some other mumbo jumbo. Ultimately, what it means to us is that there is a likelihood that Gabriel will have greater odds of long term remission than had he received the conventional treatment alone.
With that decision being made and done, the next step was for them to get everything ready, have Gabriel admitted into the hospital that afternoon and start his course of treatment. We were sent off to grab some lunch and wait for a call letting us know they were ready for him. You see, some of the chemotherapy drugs require hospital admissions to assure that the child receives enough fluids to flush the drugs from the system after they are administered. Such is the case with the nelarabine. And, the nelarabine is administered over several 5 day successions, so each time it is administered, it requires a five day hospital admission. Which is why we had to wait for them to get all those things in order.
Off we went to grab some food and do a little stroll down memory lane. We headed out to Danville, and showed Gabriel where Chet used to live years ago. We saw the swimming pool Chet did his swim team practices in. We looked at the big eucalyptus tree that Chet and his friends used to play under. We drove over the creeks Chet used to play in. And then we grabbed some frozen yogurt and started heading back to Oakland.
On our way back, we got the call. Except, it wasn’t the call we were expecting. Dr. T, the attending called to let us know that they wouldn’t be admitting Gabriel that night because they only had one dose of the medication and they didn’t want to start him on it until hey had all the meds in hand, and they had been requested from the National Cancer Institute. The medication was expected to be delivered Friday. After that call, Chet and I decided to head back to Reno, and a good decision it was. Gabriel and Chet finally headed back to Oakland for the start of the nelarabine and his consolidation phase of treatment today.
It truly worked out and we are so blessed. Gabriel got to do some horseback riding with Charlie on Saturday. Sunday, we were able to enjoy as a family, Rebeka’s 2nd birthday. I have a ton of pictures to put up, but I haven’t gotten everything set up yet to do the transfer. So, I just have to leave that as a teaser to get you to come back tomorrow.
While it was so stressful going through the doctor’s appointments and then having a daily waiting game to get the call to head to Oakland all weekend, we are just so incredibly blessed. The delay truly appears to have worked out in our favor and given all that we are facing, things have truly been moving along smoothly.
To all our friends, family, and even you strangers reading this – thank you for your support. Thank you for your prayers. Thank you for just being here for us. I know it sounds so trivial, but knowing that you are coming here regularly to check up on us, to hear how Gabriel is doing and how we are all surviving this new reality means so very much to Chet, Gabriel and I. We can’t express how humbling, yet encouraging your support, well wishes and good thoughts are. Thank you.
I’ll give Rebeka some attention tomorrow and share about her 2nd birthday and get some pictures from the past week put up. Until next time.