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.


Tenakim said…
What a loss and a horrible disease. He was precious!
B said…
That little man is a doll. I feel for his parents, but you did right in calling this to the attention of people who read your blog. Not just to inform all of us about the disease, but to inform us of this little man, and to inform people that it is alright to talk about these things. Being a mom who's oldest child died, I find a huge brick wall is up whenever people find that out. They don't want to admit that these terrible things happen to our precious little people.
Mary Moore said…
You are so right, B.

When our son was diagnosed, I can't tell you how many people I thought were my friends just disappeared, not knowing what to say or do.
Shana said…
Thanks so much for sharing.
Give your sweet kids a hug from me too.

(Before I was born, two of my brothers died on the same day. My mom said the same thing about people disappearing)
Jane! said…
Too bad it sometimes takes such awful things to remind us how lucky we are.
I hope that Dennis continues to stay ahead of that wretched disease.
Thanks for sharing his story.
Eudea-Mamia said…
Oh Mary.

This is the first question I will pose to God when someday, hopefully, I reach Heaven.

I know he will have a very good answer to why these sweet babies have to suffer so greatly, but I'm not sure I'll buy it.

Prayers for Dante's family. Em
A. Kichu said…
Sometimes i wonder why God created such disease and why de he lets such innocent kids suffer from such disease..
Bon Don said…
Poor babies having to go through such horrible experiences, I hope Dennis continues to be healthy, bless you and your family and everyone who has to battle all the awful diseases out there.

When I went through breast cancer with my mother, there were people who reacted differently because they didn't understand. Thank you for being this to our attention.

*Bon Don*
Trina said…
Very few things break my heart any more than to see a child facing cancer. It just seems so unfair!

A co-worker of mine faced Wilm's tumor with her daughter. It was discovered when Ivey was 7 months old. She is now in third grade and doing very well, although she does take BP meds and will forever.

I pray for the loss Dante's family has faced, and I pray that Dennis won't ever have to face the monster again.
Mommy In Pink said…
I'm at a loss for words, I am in tears as I write this. That's a very emotional story and I am so sorry you had to experience something like that, but thank you for telling your story. I hope that Dante's parents find peace! My prayers are with them today, and with you for having to relive that! God Bless you!
pam said…
Thank you for sharing what is such a heartbreaking experience for your family. I am praying for Dante and your little guy Dennis as well.

Your whole family will be in my thoughts and prayers.
Anonymous said…
Thank you so much for sharing that, Mary. I'm so sorry. And I am glad that your son has been able to beat it and although there are complications because of it, he's here with you and that's a beautiful thing. You're a wonderful lady and I really appreciate this post. ((hugs))
Bee said…
How unbelievably sad! He was such a cutie. :o(
Shupe said…
This too hits very close to home- my daughter has had 2 heart surgeries in her 7 years- and I'm very lucky to have her with me as well-
But it's not cancer.
I've lost so many close to me at all ages to that awful beast.
This post brought tears to my eyes..............
and I do wish the best for your son- hoping and thinking about all of the sick littles out there.........
it's heartbreaking.
YELLOW said…
A heartbreaking story. Cancer is a terrible terrible beast. My mum died of it, but I can only imagine how it would effect the family if someone who is not supposed to leave this mortal coil before you was in that position.

I also hope that what you went through with Dennis is all in the past.


Heinous said…
I'm sorry to hear about Dante. It's such a vile disease. My most sincere hopes that Dennis never has to face it again.

That was so hard when my mom had cancer... when her best friend just dropped out of her life because she didn't know how to handle it.

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