Paying the price for survivorship

There is something that has been laid on my heart for some time, but I felt inadequate in writing about it. The inadequacy exists because we haven’t lived it. Most of what I usually write here comes from a place with deep roots because we have lived it. After all, this blog was created as a space for Charlotte to read one day. When that one day comes, most of this will not even be a memory for her. Although still authentic, sometimes, the content I want to write about comes from a place of fear. I learn about things that may or may never BE because I always feel like the knowledge helps us prepare instead of being blind sided. But also, I want to learn about all the mays or may nots because I want to be equipped with knowledge so that we may be able to help others going through this in some way, one day. If knowledge is power then what we don’t know can’t help us. But sometimes what we know haunts us unnecessarily, so it’s a fine balance that I don’t always achieve.

Back early on in diagnosis and several times since, I’ve written about another Neuroblastoma momma who may be the queen of all cancer mom warriors, Melissa Wiggins who started the CKc Cannonball Foundation which funds ground breaking research to help improve both the survival rate and the survivorship of kids with pediatric cancer. I wrote about her very early on after Charlotte’s diagnosis when I was reading her latest update at the time regarding her son Cannon who had just had a dental appointment. They just saw his xrays and learned his adult teeth below his gum line were destroyed by treatment. At that moment, everything poured down on her and it was the straw that broke her the camels back. I sobbed laying on an air mattresses next to Charlotte, who was getting chemo that night, while reading her anguish. As grateful as she was that he was still alive, it was another cross her little boy would bear. Another cross she would bear for him in an instant. She always wrote that they are grateful for the fight because some kids don’t have any treatment options. And yet she needed to give herself some grace to grieve for a late term effect her little one would endure on top of everything else he has been through. I cried hoping and praying Charlotte could survive and get to see a dentist again one day. Maybe her teeth would be damaged as well but how grateful we would be to be at that appointment anyway.

And here we are. 3 years later and Charlotte had her first dental X-rays this past week. Although she has gone for cleanings before, this was her first set of xrays and we opted to add on the panoramic X-ray at this check up so that we could get a clearer picture of her dental health. Somehow deep down, I knew there would be something. I just had a “feeling” but I wanted to know the full extent. The treatment Charlotte has been through could cause issues that result in a host of dental problems (shortened roots, smaller then normal formed teeth, enamel issues, absence of teeth, etc). Charlotte’s dental appointment wasn’t a huge shock, but it’s still difficult for us to see a potential side effect of treatment surface. We are so grateful to be where we are, and we know she is not out of the woods by any means, but she IS HERE and happy and healthy and LIVING. However, survivorship has a cost. It’s hard to see our baby girl pay a price to be here, even if the price is something that can be managed. These kids often face many complications from all the treatment as they grow up, sometimes life threatening complications. So finding out that 4 of Charlotte’s permanent teeth didn’t form beneath her little gum line, along with another manageable dental concern, isn’t a big surprise but it’s just one more thing Brian and I wish we could shoulder for her so that she doesn’t have to go through anything more. And Charlotte, always so aware, over heard and honed in on the dentist explaining these concerns to me. Her little face broke my heart. She became worried her teeth weren’t healthy and what would they have to do to her, etc. Of course we reassured her and will explain everything at the level she can understand but still...if the momma bear in me didn’t start to rise to the surface wanting to shout ENOUGH! But what good would that do. Charlotte is here and God willing will keep being here, but it’s not for free. And really, do any of us get to go on this ride for free?

The mom I wrote earlier about, Melissa, is in the hospital again with her little Cannon while on a family trip to Arizona. He started having severe pain and nausea. The CT revealed a bowel obstruction. This will be his 3rd bowel obstruction. He had damage to his bowels from treatment. It’s another price he pays. And his mom, Melissa, rallies and educates and funds the work all the while living out the price for survivorship with her own survivor, Cannon. He will likely need surgery to correct the lesions causing him these issues and this surgery carries some dangers. Cannon has hearing aids and substantial dental work that will be needed and now bowel obstruction issues that cause him pain and will need to be addressed surgically....he is paying his price to be here.

So I write about the cost of survivorship without the experience, but I write this because it is a very important matter and God Willing one that we will get to understand more as we continue to pray that Charlotte becomes one of these lifelong survivors. She is still in the delicate window being monitored for reoccurrence, but effects from her treatment can surface at any moment and you guys, the list of potential side effects is long and terrifying. What price(s) will Charlotte pay? What is her price for survival? What late effects will she deal with during her life that Brian and I once again would give anything to shoulder? Only time will tell. And can we remind ourselves of Gods grace through those times and be grateful nevertheless?

As always, we appreciate your prayers. With so many unknowns for our girl there are also so many rainbows we receive. So here is a smile for you: guess who has her first loose tooth?! As we digest recent dental visit, we will soon also celebrate her first visit from the tooth fairy. She is so excited she tells everyone she sees about her tooth and smiles to wiggle it for them. She even has a little tooth pillow ready and waiting. Her joy continues to warm the world around her, radiating into us when we need it most. We appreciate all of your continued love and prayers because we know we have the most amazing village beside us. After her appointment, she got to enjoy time with her favorite people who are on their spring break. They all played together in their own pretend world at a favorite nature park next to our dentist office, and then Brian and I whisked them away to Carowinds for their last day of spring break on Friday, tickets gifted to us from Give Kids The World (who partnered with Make A Wish for Charlotte’s Wish last year). And we will keep trying to do what we’ve always done, face whatever is to be together, #familystrong and praising God for this day and his grace❤️🌈.