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Holding My Breath for 196 Days

Family attending football game
When someone in your family gets sick, I mean really sick, time slows down. It is as if we were all just holding our breath for seven months. 196 days from when we first found out to the day he was pronounced free of cancer and yet it feels like we have lived a complete lifetime in that short span.

The wish process is magical and volunteers who give their time, talent and treasure to make wishes come true strive to go above and beyond to make the experience even more magical for wish kids and their families. Volunteers are an integral part of the Make-A-Wish North Dakota team. Volunteer Wish Granters are often the first people to meet new wish families in person and they are with them through the entire wish process. This month, our blog features Annie, a wish mom, talking about the vital role her son's volunteer wish granters played in his wish as well as countless other volunteers who made life better when this family was dealing with the worst. 

“Tyler is a 17 year-old male who was diagnosed with multifocal CNS (Central Nervous System) germ cell tumors…” Germinoma. Brain cancer. This is how all of his important documents would start, and believe me, I have read them all. He was diagnosed on February 17th of 2016 after having vision problems. After months of optometry and ophthalmology visits we were referred to Mayo Clinic in Rochester, Minnesota. There they found several tumors in his brain. They were malignant and were spreading. The largest in his optic nerve chiasm pressing against the nerves, damaging them, creating the blindness and blurred vision. The cancer was also in his CSF (Cerebral Spinal Fluid). I remember while we were reviewing the original MRI the doctor had said “Do you see all of this white?  It shouldn’t be here,” and all I could think was that his brain was lit up like a Christmas tree.

You start referring to your loved one’s condition as if you have it as well, “Yes, we have another MRI coming up”. “No, we won’t start radiation now until after the brain surgery”. It affects the whole family not just the individual diagnosed.tyler

You go through the stages of grief; shock or disbelief, denial, bargaining, guilt, anger, depression and acceptance/hope. My favorite was anger. I remember researching Germinoma late one night and becoming lost in the colors of ribbons and months of cancer. His was gray and I hated it. I despised the fact that my beautiful boy was reduced to a color and a month. “Go gray in May” the web site said cheerfully and I cried. For the first time since he had been diagnosed three weeks earlier I broke down and sobbed these full body sobs that left me hoarse and sore from clenching. I hated with everything that I had in me, not only the cancer itself, this invisible enemy that stole our happiness and innocence, but also the previous doctors that hadn’t diagnosed it sooner. Finally I screamed out “Why?!” How were we ever supposed to survive this?! The testing and blood work. MRIs, spinal taps, blood and platelet transfusions. The stereotactic biopsy and the craniotomy. Four rounds of chemotherapy and 18 sessions of proton beam radiation. But it was not the treatments that kept us alive, it was the people.

I was naïve as to how much you need to rely on the kindness of others in situations such as these. It is humbling really when you think about it. There are so many good people out there that give what they can for the betterment of others. So many that want only to ease your pain, to lessen your grief. Volunteering has always been a part of our lives; you show up to help cut out Christmas ornaments in your child’s classroom, bide your time working at the local food pantry or serving groups in church, but we had never really been on the receiving end of all that giving. And so to the families and organizations that provide food for those staying at the Ronald McDonald House because they know that making supper is the last thing you are thinking about, thank you. To the piano players in the lobbies that want only to brighten your day, thank you. To the smiling men and women in blue that volunteer their time to help those who are asking for directions around the confusing Mayo Clinic corridors, thank you. I could not begin to count how many blood and platelet transfusions Tyler had to have and so to the people who regularly donate this part of themselves so that others may live….we are indebted. 

Volunteering is not for everyone but there are some who make it seem like a calling. We became close to the volunteers assigned to us by Make-A-Wish. From the first meeting with Lana and Michelle we felt enveloped in their genuine concern for Tyler’s well-being and their excitement for his wish to come to fruition. This is not their job. They were not hired to care about my child and yet you felt the love they have for him just the same. They took their time learning what he liked and what he didn’t so that the care packages they sent during treatment were personal and well thought out and always brought a smile to his lips, even in the darkest of days. They went above and beyond not only planning his wish trip but also the celebration at which they would present him the details of the trip. Even now we will get a text or phone call asking aboutTyler.

No, volunteering is not for everyone, but the impact you will make on someone who has been holding their breath for 196 days is life changing.

About this Blog

Welcome to our Wish Blog! You'll get a behind-the-scenes look at Make-A-Wish® North Dakota. See how wishes come together and how they change lives forever. Hear directly from those who work or volunteer here, or those who have been transformed by a wish. And learn why we are so committed to someday granting the wish of every eligible child, every year.

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