My daughter has cancer: A dad's story
As I walk the halls of St. Jude, I reflect on the journey we've been on together, and where we're going.
By Marcus Mashon (edited by Kelly Cox)
Today, I walk the halls of St. Jude. This isn’t any different than the hundreds of times I’ve navigated them before; except, instead of my usual laser beam focus on what appointments my daughter has today, I allow myself to think about where we have been and where we are going.
In this hallway, we see the pictures of fellow patients lining the walls. Some are battle buddies we have met, and some are adult St. Jude survivors holding pictures of themselves when they were patients. These photos are special to me. I think most parents have the same thought when they learn their child has cancer: my child is going to die. Visions of my daughter as a completely healed, smiling adult was the hope that I held onto during those first dark days. These photos brought a sense of comfort to me.
At the end of this hall, the ABC’s of Cancer come into view. Some of our St. Jude friends have drawn a few of these letters. Their messages never fail to remind me that despite the suffering these kids are going through, there is a fight and determination in them that should be envied. My own daughter, Kennan, has gone through the same suffering and the same feelings as every one of the 26 sons and daughters represented here. Although I do not wish this on anyone, I’m thankful she does not have to fight alone.
When my daughter was first diagnosed with acute lymphoblastic leukemia, I used to lament the fact that she was getting weekly chemotherapy for 120 consecutive weeks. When her cancer relapsed, I would have given anything to be back on that plan. Having a bone marrow transplant was like being thrown into the deep end of a dark pool.
It’s tempting to take a quick left out of this hallway and head over to Kay Café. Kay Café is the heartbeat of St. Jude. In here, you will see friends, nurses, lab workers, doctors and probably the CEO of St. Jude. Having such a wonderful cafeteria and gathering place on campus is a blessing.
However, we have appointments first, so we turn down the hallway. Thousands of names and organizations are listed, and my heart is full of thanks for them. The hallways is a testament to the fact that we have never received a bill for the massive expense of Kennan’s treatment.
A couple of turns put us in the Teen Art Gallery. This short hall is long on emotions for me. Immediately to the left is a painting by a battle buddy that gained her heavenly release from cancer a few months ago. We had become friends with her parents while our daughters were both on the Bone Marrow Transplant floor, and I feel sadness for her family.
Losing a child is something that I try to shut out of my mind. My sadness turns to gratefulness that my daughter is doing well, which is followed by a wave of guilt. Glancing to the right, I see artwork by two of our battle buddies from our own state. One of them is a lifelong friend of my daughter’s. They were diagnosed within a few months of each other. Both of these battle buddies are out of treatment now, and I am so happy for them. Happy and a tad envious as well. Every artwork is full of joy and happiness, and I’m amazed these kids are able to be so positive.
We make the turn toward Registration, where I sound off my daughter’s medical record number like I did the last four of my social security number when I was in the military. We have a spinal tap and bone marrow aspirate scheduled today.
In a few minutes, in Procedures, I’ll watch as my daughter is put to sleep for what seems like the hundredth time. Honestly, I’ve lost count of how many times she has done this. Yet I have the same emotional reaction every time: fear. During the first months, I would cry every time we entered this room – Kennan really did not like that! But I could not help it, as my prevailing thought was that this could be the last time I would see her awake. Over time, I have come to accept this as only a very remote possibility; however, it will NEVER be normal to me. I wait until her anesthesia has been administered, and I tell her I love her. She is under. I kiss the top of her head, and I walk out of the room and into the hallway again.
Sometimes I head immediately to the chapel at the end of the hall. Here I pray for a successful procedure. I will bargain with God about how my life will change if he could please bring my healthy child back to me again. My faith is tested during these times, but I am not sure how I would have made it this far without my belief in a higher power.
Other times I sit on a bench by a set of elevators. I have no idea where they go. Lab employees use these elevators, and I’m reminded that St. Jude is really just a small hospital with a very large research operation. My family will be eternally grateful for the research that goes on at St. Jude, day and night. It is this research that has given my daughter a much better chance to survive this wretched disease. I’m convinced that there are angels among us and many of them walk these hallways with me disguised as St. Jude employees.
Looking at my watch is making me anxious again. When Kennan is having a procedure, five minutes seems like an hour, and my anxiety level is high. Then, my phone rings, and I’m told my daughter is awake. An enormous weight is lifted as I make my way back down the hall to Recovery. I am relieved to see Kennan awake and chatting. Our day at St. Jude is over. As we retrace our steps to leave, all of the emotions of the day are behind me; but as a St. Jude parent, I will re-live them all over again tomorrow.
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