Gathering our stones

It’s only mid May and Charlotte is in “bring it on summer” mode. Granted, we live in North Carolina so summer feels like it’s here. She’s been swimming in the lake near our home, swimming at the neighborhood pool, played on a backyard water slide, and had water blaster fights with no ending in sight. She is free and loving it! While her siblings begin swim team, she splashed in the pool right along side the other younger siblings instead of sitting under an umbrella eating snacks and watching, longing. Don’t get me wrong, we were soooo incredibly grateful last summer to be there and so was she. But this year she’s not on the sidelines. “Me too Mommy?” Yes you too sweet girl. She is asking for swimming lessons too so we will start planning for that as well! Bring on summer!!

As summer approaches, so do her June scans and assessments. It’s hard to look past those scans because life seems to hang in the balance of those results every 3 months and sadly dictates everything possible for us and for Charlotte. Once the June Scans are over (and hopefully see clear scans again), Charlotte will be free for the summer however Brian and I will turn out attention and focus towards the next task and hurdle—beginning the hard work of narrowing down where Charlotte will go from here. After September’s completion of this current vaccine clinical trial, what is next?

Hopefully, we will be among other families who will have completed the vaccine and have a decision to make yet again. And it’s a decision no one helps you to make. There is no one to hold our hand and no known consensus. Will we be one of the families who decide “enough is enough. She’s been through so much. We’ve done all that is within reason.” Or will we be among those who say “She has come a long way but the fight is not over. There is still more left on the table.” You guys, we know we will be grateful to even be in this group where additional low toxic therapy to help keep this cancer from returning is a huge blessing and victory, but it’s also incredibly hard to know what to do. To know what is best for Charlotte. To know we aren’t doing things “to Charlotte” but “for Charlotte.” We must ask ourselves that question. And we must believe whatever we do is because we believe it should and WILL one day be continuation of care instead of over treating.

As we keep gathering the stones that Charlotte can use, we realize some were right in front of us and easy to find. They came in the form of treatment we could easily access and even covered by our insurance. These stones were weapons that doctors, pharmaceutical companies, and research uncovered and laid at our feet. We had to pick them up, examine them, learn how to use them, and give them to our baby girl to use to fight her cancer of course. But now, there is no one to help hold our hand and guide us. There is incredibly awful statistics and scary data that suggests Charlotte is at risk of becoming very sick once again with this cancer. And if so, this cancer has the potential of coming back altered, mutated, changed, and with vengeance. With no warning signs or clear understanding of why. Charlotte’s specific cancer genomic testing revealed she has a very aggressive mutation, an amplification of one of the genes that the tumor requires to proliferate. And so, as her parents, we are left to uncover other stones that could be used as weapons. We look further from our home base where we have been. We found one, the Neuroblastoma Vaccine from Sloan. There are so many more stones out there but which ones would help her? Which ones would help but not hurt her? Which ones are reasonable weapons to gather? Do we use them right away or store them for just in case? How many do we need to place in her little hands? When are we done looking for more stones?

I have no answers. Only so many questions. The fact is, we are living in a beautiful but strange existence where one foot is planted in the normal world while our other foot is planted in the reality of having a child with a cancer such as Charlotte’s. There is joy and beauty but restless worry and energy.

Today I had a couple rare free hours. I was suppose to take Taylor to a doctors appointment for some issues she is having with her ears, but the office called to reschedule and so all kids went to school and Preschool as scheduled. So, I decided to stop and get a pedicure. While there, I saw a message on my phone alerting me of an update I had been waiting for. Last week the ANR 2018 (annual Neuroblastoma research symposium) was held in San Francisco where most of the worlds leading Neuroblastoma research doctors and scientists presented their current data on their research as well as new ideas for upcoming work. The video of this conference complete with slides was finally released. I was able to watch some of it while simultaneously treating myself to a relaxing pedicure. I was able to find the part where a doctor was speaking about research that pertains to some decisions we must make about Charlotte. There is another trial she could qualify for after we finish this vaccine study. Many parents in our situation are moving forward to this DFMO trial in hopes that this drug prevents Neuroblastoma from returning. We have so much to learn but after listening to this doctor speak about his current findings, I found I only have more questions. And the reason for that is because the doctors themselves continue to have more questions as to how to use this very effective and powerful drug against Neuroblastoma cancer cells.

So, even when we try to walk onward and we find more promising stones, we don’t always know how to use them. How much more can her little hands hold? We know she’ll take whatever we place on her and she’ll do it with courage and grace because that is Charlotte. But as we pray for knowledge to discern, we pray for the wisdom that we need to know where to go and when enough is enough. I believe, I KNOW, God will guide us through this and show us the way. He has so far. So, for now, we keep gathering the stones we may or may not need. And we wait. We wait while in this very sweet and special moment in time with healthy, happy, full of life Charlotte, Taylor, and Parker. This will be the first summer in 2 years Charlotte will hopefully be able to enjoy all that life has to offer—mainly we are thinking tubie free summer fun full of swimming and water play and unrestricted playing and traveling. No treatment schedule or hospitalizations to balance, or hardware on her body or medication to limit her fun. Thank you for your continued prayers as we approach scans in a few weeks and as we navigate this terrain of clinical research and information as to what to do next. Again, thinking about uncovering and using stones, this quote speaks to me:

“If God puts a Goliath in front of you, He must believe there is a David inside of you.” -Carlos A. Rodriguez

Mother's Day Weekend

On the Lake Mother's Day weekend. Our family's favorite place to be right now is out on our boat somewhere together. It feels like a mini vacation every time.