Dante -- A Trooper To The End
I hesitated to talk about this, but I so want to and need to, so I will. It's just a very sad, very difficult topic, and we've all had enough sadness, I think. This story comes very close to home, however. Too close for comfort. And I think it's something we all need to be more aware of, regardless of its horror.
I've decided I know way too many little children who have died. There is something so wrong with that.
A little while ago, I talked about a little boy named Dante who had Stage 4 Neuroblastoma, the same type of cancer my son "Dennis" had as a baby.
Little Dante passed away last Tuesday, Jan. 6, in the arms of his mom and dad. He suffered with this cancer for a year, which was half his very short life. He fought hard, going through more than most people go through in a lifetime. So many of these children do, and that's the horror of it.
Neuroblastoma is a nasty cancer, not that there is such a thing as a "good" cancer. The problem with Neuroblastoma is that it's "smart", and it's devious. It sneaks up on you silently, and only makes itself known once it's often too far gone. It also quietly learns about the chemotherapies that are being forced into your veins, and it changes its inner structure so that it can continue living, growing and destroying its host. It can also return 10 years after being "cured", unexpectedly, and with a vengeance.
Neuroblastoma also occurs most often in youngsters. Dennis was diagnosed at 4 months of age, Dante at one year. If a child is diagnosed before the one-year mark, their chances of surviving are much greater. That's where luck was on our side. We were also fortunate in that Dennis' cancer was at Stage 3 and had not yet managed to infiltrate any other organs. It had, however, spread across the midline of his tiny body, so the doctors decided it was Stage 3. Rarely is it diagnosed at an earlier stage.
In Dennis' case, the tumour was cystic, filled with fluid as well as many blood vessels, and by the time it was found it had basically filled his entire abdominal cavity. Cystic Neuroblastoma, we were told, was very rare, and the doctors didn't know much about it. All we knew was Dennis' lungs were being compressed to the extent that he could not breathe properly any longer. His little stomach could not hold anything in it. His intestines were no longer able to function because the tumour had pushed them to and fro, making it impossible for them to do their job. Hence, Dennis had constant diarrhea and vomiting. His spine was being forced to grow outward at the abdominal level, the tumour pushing pushing pushing in every way possible. The tumour had pretty much obliterated his vena cava, making him have to create many new blood vessels to help carry the blood from his lower body back up to his heart.
It took two months of constant doctor visits for us to finally convince our physician that there was something very wrong with our son. By then, it was an emergency situation and he needed to be operated on quickly.
Three surgeries and eight rounds of chemo later, our son seemed to be on the mend. He still had some tumour left inside, wrapped tightly around his aorta, which the surgeons believed was too risky to remove.
Dennis gets monitored annually, and will be for the rest of his life, to ensure this monster doesn't yet again rear up its ugly head. He now also has blood pressure issues and is on medication to keep it under control. He's lost the use of one kidney, so we always have that in the back of our mind. As well, because of the chemo (luckily, he didn't have radiation), Dennis is now at higher risk for secondary cancers (leukemia, skin cancer), as well as heart failure later in life.
But, like I said, we are one of the lucky few who battled this beast and seem to have won. I don't know too many other families who can say the same.
And that's why I'm writing this, so that the rest of the world -- those who are fortunate enough not to have to experience having a child with cancer -- can maybe have a bit of a better understanding of what it means.
Looking back on those days now, I find it very hard to remember how I got through each day. Getting up every morning knowing it was another day at the hospital, another day of needles being poked into my little boy, another day of poisonous drugs infiltrating his tiny, new body in an effort to eradicate a nasty disease no person should have to experience, especially a child. Another long day of my baby vomiting after every meal, crying because he was just so sick, and having to stay inside and away from the world for fear of catching a simple cold, which could kill him. But we did get through it, somehow.
I can't say I know how Dante's family is dealing with things. I cannot fathom losing a child, although long ago, I admit I planned Dennis' funeral because we just didn't know what was going to happen. I even had the songs planned out. "You Are My Sunshine" was going to be one of them, since that was the song I sang to him all the time, tears in my eyes. I still sing it to him at times, but it's difficult because all the emotions are right there, just under the skin. However close we felt we came to it, we didn't, unlike Dante and so many other children. And that is what I try to remember everyday. And because of this, I don't take a minute for granted.
I'm not a perfect mother by any stretch of the imagination, but I remind myself constantly of how lucky I am to still have both my children here beside me, happy and healthy, and then I give them an extra hug or kiss on top of their heads, just to let them know I love them, and I'm so very fortunate to have them in my life. I am lucky enough now to realize how fleeting life can be, and how quickly it can be taken from us. It's been a very hard lesson to learn, but a very important one, and I am so glad that I've been able to take something that was just so awful and turn it into the silver lining that I now wrap my family in everyday.