Coin Toss

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No one can imagine finding out your child has cancer. Then understanding its Stage IV with wide spread metastasis and that they have a 50/50 chance at beating it. 

A coin toss. 

So then you go through the harsh treatment and you watch your child battle what you would shoulder for them in a heartbeat. And then they do it. They make it and survive the treatment and reach the end of treatment. Their scans are clear! Your heart sings it’s praise YES!!! And you want so badly to feel this glory but you can’t feel it in its entirety because here we are again looking at a coin toss. You see, after treatment is over kids have about a 50/50 chance of relapse. Your child just went through all that treatment and now it’s a coin toss whether or not their cancer will return?! 6 rounds of chemo, surgery, 2 bone marrow/stem cell transplants, radiation, and Immunotherapy...18months of fighting and beating this disease back and yet they are NOT cured. This is the reality of children with Stage IV Neuroblastoma. 

The vaccine trial that Charlotte is currently on and almost finished with is aimed at raising those odds. Our doctors at Duke did not bring this trial to us. There was no one any where on this planet that said “here is what you do next.” There are no medical teams reaching out to families with children who have successfully finished up frontline protocol in order to recruit them for studies. We entered no mans land. We were told congratulations now go enjoy life. That’s what we wanted and prayed for but....

what about the coin toss out there looming. 

We researched and learned of 2 trials aimed at keeping kids in remission: The Neuroblastoma vaccine trial and DFMO. We went for the vaccine and recently there has been some promising study data released at the ANR (annual Neuroblastoma research) conference in San Francisco CA. The study is working. The data is from 2017 but the coin toss is improving. The 2 year survival rate of kids who relapsed and were brought back to remission and given vaccine has jumped from 50% to 90%. Next year we should see numbers same if not better that include Charlotte’s arm on this study as she is in the group who have received this vaccine directly out of treatment without relapsing. This is HUGE for these kids. Furthermore, zero long term effects observed in 2 years and still counting...

So what now? We have Charlotte’s 1 year off treatment scans during the last week in September and then we fly to NY for her final vaccine injection and a bone marrow biopsy. We wrap up the study and again we enter no mans land. DFMO is an option to continue after vaccine as an oral pill form of therapy aimed at starving Neuroblastoma of essential pathways it could grow along. Half of families will continue onto this trial. We aren’t so sure.

We are learning.

We are questioning

We are praying for guidance

There is no one recruiting us or saying “this is what you do next.”

Again we enter no mans land.

The enormity of making these decisions on Charlotte’s behalf is very stressful. We don’t always know if what we are doing is right but we do feel like we have been guided. This must be God walking with us. I don’t know any other way to explain that calm sense we feel when panic and worry and anxiety should prominently reside.

We need her scans clear in September. We need her bone marrow clear. We need to know if we should continue on to DFMO. We need to bask in the glory when it’s time. We need to rest when it’s time and let her be. We need to push for answers to our questions when it’s time. We don’t want to be on one side or the other of a coin toss, but we are and this is life and we need to accept this. We need to come to peace with that reality and with our decisions we make for this other little human being that God entrusted us with. 

She is ours for only just a little while. Tomorrow she goes to her first day of 4s Preschool. Tomorrow she will walk proudly toward her new class. She’ll probably skip and smile and exude that confidence she does. Tomorrow she’ll make a new friend because she makes friends so easily. Tomorrow she’ll be full of important news about her day. She gets this day and God willing so many more after tomorrow. 

Tomorrow is a coin toss for us all and I know that’s a reality for everyone reading this and for everyone who isn’t. I guess that could be a hard fact and a scary one for fear that the coin doesn’t land how you hope. But Charlotte has taught us something different then fear and worry hasn’t she. She helps us live with deeper love and joy and gratitude everyday we get. She doesn’t watch the coin toss. She doesn’t concern herself with what she cannot control. She just keeps going and moving and bringing us right along with her.

People always say children will keep you on your toes. And that is true. But they can sure keep you on your knees too