Alas, I promised everyone that I would continue on with more about Gabriel’s hair loss. And, I will not disappoint for fear of being chastised.
The radiation eradicated his hair. It was starting to grow back after he first started loosing it and then WHAM…I guess that is how you would describe massive clumps of hair coming out.
Fortunately, Gabriel was really cool about it. He pretty much asked that we cut his hair again. We suggested shaving it close as close as possible and he was good with it. So, this was the before image –
And, off it came.
And, Chet being the good Dad, he also joined Gabe in his hair adventures.
And Chet after.
And the two boys, with their matching hair cuts.
So, there you have it – the hair loss update. I offered to shave my head too, but Gabriel wasn’t too keen on the idea. I’m okay with that given it might be a bit awkward with my job.
I know there is so much more to update on…its just by the time the evening comes I really just am too tired to think to hard about much of anything. Tonight is no exception. But, I’ll give it my best.
Tuesday, Chet and Gabriel will head back to Oakland for another hospital admission for the next round of nelarabine. This trip, Chet and I are splitting the time in the hospital with Gabriel – we will each take two nights. After Gabriel and I get home on Saturday, Gabe will have two days here and then he and Chet will head back down to Oakland for one more overnight hospital admission for cytoxian. And, hopefully, that will be the last of our hospital visits for several weeks.
This weekend we did a “soft launch” of our fundraising efforts. While fortunately, Chet and I have been blessed with tremendous family support as well as insurance, there are certain elements that have not been covered by insurance and the cost of traveling back and forth to California has truly began to take it’s toll. We have put together a medical trust fund for Gabriel and we’re doing some things to provide opportunities for people to support Gabriel. Part of Chet and my commitment is that once we’ve been able to address the expenses and bills that we’ve incurred thus far as well providing for the remainder of his treatment, any remaining funds in the medical trust fund will be donated to a qualifying 501(c)(3) organization which provides assistance to families in our area who are faced with the diagnosis of a their child with a life threatening illness. While Chet and I are committed to supporting leukemia awareness and fighting for a cure for leukemia – we’re well aware that there are many different catastrophic illnesses children can be diagnosed with besides ALL. Our hope is that we can pay it forward not only with what we can put together, but that our fundraising efforts will provide sustainable contributions to whichever organization we ultimately select.
I hope to finish the details in the next couple days – so stay tuned for a formal “official” launch of Operation Leukemia Elimination – Battle For Gabriel. Here’s a tiny little teaser for everyone…
Finally, to provide a little update. Last Tuesday, Chet and I faced one of the certain to be many speed bumps in this journey. Of course, just as we were feeling more comfortable and normal in all of this, we received a call from one of Gabriel’s treating oncologists. You see, every time they do a lumbar puncture and intrathecal chemo treatment on Gabriel, they take a sample of the spinal fluid. When those tests are done here in Reno, the clinic makes a slide here and then sends the slide to Oakland for their pathologists to review. Apparently on the two slides that were taken here the Pathologist found cells which were not expected. He notified the oncology doctors who then did a more close examination. As I understand it – and we’re still waiting for better information, as this was all communicated through a brief telephone call – after further review, only one of the slides appeared to have a “blast” cell, essentially a leukemia cell.
Now, understand that it can be very difficult to discern different types of cells, particularly on a limited sample, as was the case with this review. And, this is confirmed from Chet’s sister, Katie, who is a microbiologist working with cancer cells. Moreover, the doctor was very clear about wanting to keep us informed, but not wanting to alarm us. So, they are going to do another lumbar puncture, this time without a chemotherapy treatment, when Chet and Gabriel head back down to Oakland for his cytoxian treatment. They will take the sample and immediately send it out to the pathology lab for a full examination.
This kind of stuff just takes the wind out of your sails. But, we have to keep in perspective that he’s had the radiation treatment, and the purpose is to kill off any errant cells which might be floating around. However, it still is just a bit unnerving.
I presume there are a lot of questions floating around out there in the readership. What does it mean? Why? Do you expect the cells? In a lot of ways, we don’t have those answers yet. Next week we will get more answers. I can do a little explaining however.
First, when Gabriel was diagnosed, his body was absolutely inundated with leukemia. His whole blood was effectively 97% leukemia cells. So, when they did the very first lumbar puncture, with his level of infection, they expect that there will likely be some contamination from the tissue the needles passes through to get to the spinal fluid. As such, when he was diagnosed, they found a very small number of lymphoblasts in his spinal fluid. Due to the small number and his infection level at the time of diagnosis, they have to make certain assumptions, and one of those was that the lymphoblasts found in the spinal fluid sample were due to cross-contamination, not necessarily present in his spinal fluid. Based upon those assumptions, the number of lymphoblasts present at that time, and other factors is how they determine what his risk level is and the associated treatment plan.
Now that they think they may have identified a lymphoblast in his spinal fluid – that may be a game changer, but it is unlikely. At this point in time, as I can understand, they need to go back and reexamine his spinal fluid. Its just like going back and reassessing whether the assumptions were accurate or inaccurate. And, even if those assumption were inaccurate – say the presence of lymphoblasts in his spinal fluid wasn’t solely from cross-contamination – the doctors have to determine that it doesn’t change the treatment plan.
The likely outcome will be no change. Even if there were some lyphoblasts present in his spinal fluid at the time of diagnosis, the numbers have to be above a certain level to result in a change in his treatment plan. Basically, the doctors are just affirming that the rules haven’t changed even if the basis the assumptions were made are inaccurate.
At the end of the day, this is all likely a big ‘ol non-issue. But, it just scrapes at sores in Chet and my heart that aren’t nearly close to healing. It is so difficult to walk this path at times, and to have the information come at you just when you start to feel comfortable feels a lot like someone pulling the rug from under your feet. You look at Gabriel, and other than the kid having no hair, you just can’t fathom that he’s sick. He doesn’t look sick. He doesn’t act sick.
I can’t express the times where I just sit there and shake my head, unable to process that this is happening. Unable to comprehend how this could happen to a child. Why a child should have to face such adversity, such pain, so much when they should be riding their bikes, playing with friends, going to movies, going to school. I have always known and understood that life isn’t fair – but, really, it is so incredibly unfair that a child would have to endure this, or more as many other kids do. There isn’t a day that goes by that I don’t recognize that we could have it so much worse.
Yet, despite the heartache, the added stress in our day, Chet and I know that we simply have no control. We have to trust the doctors. But, most importantly, we have to trust God to handle this. And, when you give up feeble attempt at controlling any of this, it affords so much relief. I’m not going to pretend that all the stress, all the heartache, all the anxiety goes away. It doesn’t. But, for us, when we realize that we don’t have a mustard seed of input into whether there are lymphoblasts or not in Gabriel’s spinal fluid – well, it just takes that much pressure off so that you can look ahead and the rest of that day, to tomorrow and the day after.
In short – Gabriel’s doing awesome. He’s an amazing kid who continues to be just demonstrate an incredible amount of strength and fortitude through all this. For that we are so blessed.
We are so grateful to all of our friends and family who have given us so much support throughout this process. Sometimes when I look back and realize we have only been not even three months, I can’t believe it, it feels like a lifetime already. But, each day gets easier. We will have speed bumps, but they are just that something that jars you when you’re not paying attention, that’s it.
To all of you who are reading this, please continue to pray for him. The power of prayer is awesome and immeasurable. The love and support each of you have given us, thank you. Even though we are horrible about sending thank you notes, making telephone calls and the like – we are just so blessed to have each of you in our lives, thank you.
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