I walked into Alex's room this morning to check on him since his white counts are literally zero, making sure he didn't have a fever and I realized I'm back where I started 6 years ago. Same room, similar disease, different boy.......but the same fight.
I stay up with him until he goes to sleep, just like I did with Ian.
I care for his needs, making sure he gets his medicine, constantly checking him for any signs of pain or illness.....just like I did with Ian.
Eric & I agonize over balancing keeping him healthy vs. letting him live as normal a life as possible.....just like we did with Ian.
I keep a walkie talkie by my bed so Alex can call me in the middle of the night if he needs me.....similar to Ian; with Ian we used cell phones but I tend to sleep through text notifications these days so we've gone 'old school' with Alex.
I've rearranged my life around medications, doctors appointments and tests.......just like I did with Ian.
One thing is different, I didn't ask for a projected prognosis this time. Ian had a 85-90% probability of being cured but he was the 15%. I know doctors want to give you hope but in my mind prognosis = 'my best guess' so why ask? So when folks ask what Alex's prognosis is I tell them the truth, the doctors didn't offer us one and we didn't ask......we only have two options and we've experienced them both.
The battle against cancer continues...
Wednesday, November 29, 2017
Tuesday, November 28, 2017
When bowling makes you cry
Alex's first thought when he was told his cancer was back was, 'when
can I bowl again?' This guy LOVES bowling and he's good at it! Earlier
this year he bowled a 297 game - for those not nuanced in the finer
points of bowling, a perfect score is 300. He has every known bowling
apparatus or tool known to man or sold online. Do you know how hard it
is to get excited about watching professional bowling? I do! But he
watches it.
He had been planning on bowling with his grandpa tomorrow; the first time in weeks. For someone who bowls twice a week, that's a lifetime in dog years. Now he can't. His blood test results today showed that he has virtually no white cells in his body - WBC count 0.3, ANC 0,0. Its hard to get much lower. What that means is he is neutropenic (word for the day) and can easily get an infection that could land him in the hospital - again. I hate this; we had to let him know that bowling tomorrow was not a good option and after a few moments of disappointment you know what my incredible young man did? He took it and rolled with it; he just keeps rolling with the punches, trying to look on the bright side and looking forward to next week when he might be able to bowl.
It's not the bowling that made my cry, it's how wonderful Alex is; how he just keeps going and how much he doesn't deserve this.
He's had some really great highlights in his life, i.e., playing for the US National Bowling Team in the Special Olympics World Games in 2015 but he's also had some tremendous lows......but he keeps going.....so we keep going.
He had been planning on bowling with his grandpa tomorrow; the first time in weeks. For someone who bowls twice a week, that's a lifetime in dog years. Now he can't. His blood test results today showed that he has virtually no white cells in his body - WBC count 0.3, ANC 0,0. Its hard to get much lower. What that means is he is neutropenic (word for the day) and can easily get an infection that could land him in the hospital - again. I hate this; we had to let him know that bowling tomorrow was not a good option and after a few moments of disappointment you know what my incredible young man did? He took it and rolled with it; he just keeps rolling with the punches, trying to look on the bright side and looking forward to next week when he might be able to bowl.
It's not the bowling that made my cry, it's how wonderful Alex is; how he just keeps going and how much he doesn't deserve this.
He's had some really great highlights in his life, i.e., playing for the US National Bowling Team in the Special Olympics World Games in 2015 but he's also had some tremendous lows......but he keeps going.....so we keep going.
Chapter Two
If I was being completely accurate, this would actually be Chapter
Four; if you count Alex's heart transplant in 1990, his cancer at age 10
in 2000, Ian's cancer and now the reoccurance of Alex's cancer 17 years
after his original diagnosis. But for those who only came into the
story with Ian's cancer in 2011, it's Chapter Two for you. If you're
having problems following my logic, now you know how I feel about the
Star Wars movies.
A friend encouraged me to start writing again and I think she was right but Chapter Two doesn't start with Alex's diagnosis of Stage 4 Diffuse Large B Cell Non-Hodgkin Lymphoma on 11/18/2017. It starts five years ago after Ian died from cancer and the journey since then. This will be hard for some people to read; it's hard to write. I'll disappoint people; I've disappointed myself. I've questioned everything I believe. Some will disagree with me. Others will see truth in what I say and know that my journey is much like theirs. That the journey of faith is not a straight line; there are pits and valleys and sometimes the mountain tops are hard to find and even harder to get to. That God is not based in theological points; he's based in how He impacts our lives.
But let's start with now.....I knew for months that something wasn't right with Alex's health but none of the test results were making sense. My mom radar was up but I couldn't put my finger on what the problem was. All these little things kept coming up. A weird bump on his heal - the podiatrist pronounced a slightly misshaped heal bone. An unusual dis-colorization on his right foot??? Again, a reasonable explanation from the specialist. A lump under his arm - a sebaceous cyst confirmed by biopsy. But his blood work - that was the puzzling part. His numbers were way off but no explanation why; not from his primary physician or his hematologist and they ran a litany of tests. Even Loma Linda University Medical Center spent a week testing him for everything under the sun with no answers. But in the end, it was cancer.....again. Or in his case, PTLD - Post Transplant Lymphoproliferative Disorder - a special cancer just for transplant patients. He had PTLD back in 2000 and beat it. His first dose of chemo reduced the lymph nodes the doctors had found in his neck and six months later he was declared cancer free and remained that way for 17 years. We had no idea it could come back. We would find out later that other transplant kids who had PTLD had reoccurances ranging from 3 months to 6 years later. Our Alex, being the record breaker he is, held out the longest at 17 years.
I was hoping since we hadn't detected any lumps anywhere and nothing was showing up on the CT scan except for one little bump measuring 1.3mm that couldn't be felt by the doctors, that we had caught this thing early, maybe Stage 1 or 2. When the PET scan results came back we were shocked to see the cancer was wide spread - upper and lower abdomen, in the bones, his spinal column, his skull......everywhere. We were not prepared for Stage 4. How did I miss this? How did I let this get so bad?. How could I have let my boy down in such a major way? Why didn't I press the doctors harder, sooner? My job was to protect him, look out for him, be his advocate with the doctors and I had failed him. I had let this progress to this point.....the guilt is overwhelming.
Eric & I are tired, we're worn out from fighting. It's just been 5 short years since we watched Ian die; not nearly enough time to recover and regroup. We've always had a 10 years stretch in between major medical crises' with our kids; why now when we are still reeling from Ian's death? I had just begun to feel like life might be ok. You know what my goal for this past year was? To try and find joy again.......so much for that. I can't tell you the number of times I've reminded God that we need a break, that we can't do this again, that this kind of fight will break us and not in a good 'christian' way. Break me to the point of walking away. My faith had been hanging on by a thread the last five years and not fishing wire or a spider's web that is thin and delicate but deceptively strong so don't try and get all metaphorical on me. I have had to fight desperately to retain some semblance of belief and trust that God does love me and cares about what we're going through and as a Father wouldn't rip my heart out again.
A friend encouraged me to start writing again and I think she was right but Chapter Two doesn't start with Alex's diagnosis of Stage 4 Diffuse Large B Cell Non-Hodgkin Lymphoma on 11/18/2017. It starts five years ago after Ian died from cancer and the journey since then. This will be hard for some people to read; it's hard to write. I'll disappoint people; I've disappointed myself. I've questioned everything I believe. Some will disagree with me. Others will see truth in what I say and know that my journey is much like theirs. That the journey of faith is not a straight line; there are pits and valleys and sometimes the mountain tops are hard to find and even harder to get to. That God is not based in theological points; he's based in how He impacts our lives.
But let's start with now.....I knew for months that something wasn't right with Alex's health but none of the test results were making sense. My mom radar was up but I couldn't put my finger on what the problem was. All these little things kept coming up. A weird bump on his heal - the podiatrist pronounced a slightly misshaped heal bone. An unusual dis-colorization on his right foot??? Again, a reasonable explanation from the specialist. A lump under his arm - a sebaceous cyst confirmed by biopsy. But his blood work - that was the puzzling part. His numbers were way off but no explanation why; not from his primary physician or his hematologist and they ran a litany of tests. Even Loma Linda University Medical Center spent a week testing him for everything under the sun with no answers. But in the end, it was cancer.....again. Or in his case, PTLD - Post Transplant Lymphoproliferative Disorder - a special cancer just for transplant patients. He had PTLD back in 2000 and beat it. His first dose of chemo reduced the lymph nodes the doctors had found in his neck and six months later he was declared cancer free and remained that way for 17 years. We had no idea it could come back. We would find out later that other transplant kids who had PTLD had reoccurances ranging from 3 months to 6 years later. Our Alex, being the record breaker he is, held out the longest at 17 years.
I was hoping since we hadn't detected any lumps anywhere and nothing was showing up on the CT scan except for one little bump measuring 1.3mm that couldn't be felt by the doctors, that we had caught this thing early, maybe Stage 1 or 2. When the PET scan results came back we were shocked to see the cancer was wide spread - upper and lower abdomen, in the bones, his spinal column, his skull......everywhere. We were not prepared for Stage 4. How did I miss this? How did I let this get so bad?. How could I have let my boy down in such a major way? Why didn't I press the doctors harder, sooner? My job was to protect him, look out for him, be his advocate with the doctors and I had failed him. I had let this progress to this point.....the guilt is overwhelming.
Eric & I are tired, we're worn out from fighting. It's just been 5 short years since we watched Ian die; not nearly enough time to recover and regroup. We've always had a 10 years stretch in between major medical crises' with our kids; why now when we are still reeling from Ian's death? I had just begun to feel like life might be ok. You know what my goal for this past year was? To try and find joy again.......so much for that. I can't tell you the number of times I've reminded God that we need a break, that we can't do this again, that this kind of fight will break us and not in a good 'christian' way. Break me to the point of walking away. My faith had been hanging on by a thread the last five years and not fishing wire or a spider's web that is thin and delicate but deceptively strong so don't try and get all metaphorical on me. I have had to fight desperately to retain some semblance of belief and trust that God does love me and cares about what we're going through and as a Father wouldn't rip my heart out again.
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