What Do You Do?

What do you do when your child is diagnosed with cancer?

This last week our youngest daughter, Kaitlyn Shea, age 2, had an MRI that confirmed the existence of a tumor behind her left kidney, which has a very high probability of being neuroblastoma.

Neuroblastomas are cancers that start in early nerve cells of the sympathetic nervous system and most often occur in infants and small children. While very rare, it is the most common form of cancer in children under the age of five with about 700 instances each year and the cause of this disease is unknown.

What do you do when you get a phone call telling you your baby girl has cancer? We are blessed to have a good family friend as our pediatrician and she called Terra with the preliminary diagnosis and Terra then called me as I was walking into Home Depot to get some supplies for a work event that evening. For me it just didn’t seem real. I was sort of numb, wasn’t really thinking or processing, a bit in a fog. I even had to call Terra back to ask what type of cancer it was and how you spelled it. I sat in my car, googled Neuroblastoma to see what it was and then prayed for my little girl. Your world almost stops in that moment, and you somehow expect the world around you to stop as well. But it doesn’t. So you look up, take a deep breath, and go on living life.

The medical community considered this an “accidental” finding but we know better. The story unfolds beginning several months ago. Last October at a routine doctor’s appointment Kaitlyn’s abdomen was slightly distended and since she was having some bowel difficulties our pediatrician ordered an ultrasound. That scan revealed hydronephrosis (water on the kidneys) but nothing serious or alarming. At Kaitlyn’s spring check-up the doctor decided that even though she appeared perfectly fine to be through and re-do the ultrasound to ensure that the excess fluid has dissipated. That renal ultrasound three weeks ago was the first time the mass was spotted and led to the MRI of this past week confirming what we know today. We are so grateful for the providence and graciousness of our God to allow this to be caught exceptionally early for this disease.

Most of these neuroblastoma cases are diagnosed once the child is already quite sick and the tumor has enlarged to such a point its putting pressure on other organs causing pain and other symptoms. We are very blessed to have caught this so early that Kaity is completely asymptomatic and we are hopeful the disease has not spread beyond this one area.

So what do you do when you get that call? You call a few close friends and ask for immediate prayer. You schedule an appointment with the pediatric oncologist and ask grandma to come and babysit the other three kids. And then your day continues on, whether you’re ready or not.

What do you do when your child is diagnosed with cancer and you come home late that night? You go into her room and hold her in your arms. You cuddle with your wife and you both cry a little as the reality sets in that your world and your daughter’s world have been radically and irrevocably changed.

So what do you do that day after you first get the word that your child may have cancer? You meet with a pediatric oncologist who doesn’t ever use the “C” word. It’s a disease; it's a tumor, a mass, a growth. The doctor is calm and reassuring, this is not the first time she has had this conversation. She’s optimistic and confident, but isn’t that her job? And even though we have been so impressed with the medical professionals we’re dealing with, our confidence is not in their skills or their medicines. We’re optimistic because of the God we serve and confident in His character and His steadfast love.

So what’s next? Surgery is absolutely in Kaitlyn’s future. The first step will be a MIBG scan. This scan uses a form of the chemical meta-iodobenzylguanidine (MIBG) that contains a small amount of radioactive iodine. It is injected into a vein and travels through the bloodstream, and in most patients it will attach to neuroblastoma cells anywhere in the body.

The day after the injection the body is scanned to look for areas that picked up the radioactivity. This scan will help identify where the neuroblastoma is and whether it has spread to the bones and/or other parts of the body.

At this point there are still a lot of unknowns. What type of tumor is this? What will the scan next week reveal? When will the surgery be scheduled? If the tumor is cancerous what stage of neuroblastoma are we dealing with? Based upon the staging of the cancer and the appropriate risk group, what are the proposed treatments and prognosis? We are wrestling with these questions and unknowns.

But let us share with you what we do know. We know we serve a God who sits on the throne and is still in control, even on the hard days. We know our daughter has a Heavenly Father who loves her far more than we do and He has a plan for our baby girl. We know we are surrounded by family and friends who care deeply about our children and us.  We know that we fellowship with a community of believers who encourage and strengthen our faith in the difficult times. We know that the promises of our God are faithful and true. A promise that has been very real for us this week comes from Lamentations 3:31-32. For the Lord will no cast off forever, but, though he cause grief, he will have compassion according to the abundance of his steadfast love for he does not willingly afflict or grieve the children of men.

Terra and I and our family choose to live life and to live it to the fullest (and if you know us Fisk's, we probably won't do it quietly either). We choose not to live in denial, as if this reality didn’t exist but rather to live in reliance on a sovereign God who gave us this reality. We choose faith not fear. We want to trust, not be terrified. We ask for wisdom instead of wallowing in self-pity. We embrace the suffering we’re called to endure. We walk through this trial and we do not walk alone. The Spirit of the Almighty God is upon our family. And we walk with you, our family and friends who have rallied around us in an incredible display of the love of the family of God.

So what do you do when the pediatric oncologist tells you that yes, this is cancer, even without using those words? In that moment when you know your precious two-year-old baby girl has a disease that could kill her? I took the rest of the day off, took my wife to lunch, went home to my family and took the kids to the pool for an afternoon of fun.

Loud and Living Life!