After hearing the ridiculous statement “your child has cancer,” you don’t really understand much that immediately follows. At least I didn’t. I saw the doctors mouths moving. I saw them shuffle through papers. I heard them asking me to sign things. Consents. Waivers. Proof that I was “okay” with my son losing his ability to procreate. Or possibly lose his hearing (which he did). Or develop a secondary cancer (which still looms over him). A myriad of possibilities could happen when subjecting your child to multiple poisons and harrowing therapies. If I wasn’t in shock already, this endless list of ickiness would undoubtedly put me there.
So, in learning what my son would have to endure over the next 15 months: chemotherapy, surgeries, radiation, and a bone marrow transplant, well, I was completely overwhelmed. Ben took each day in stride while I worried about the next. It was a blessing he was so young – he doesn’t really remember anything of this first battle. All he knew was that the poison was helping him feel better. He could finally walk without pain. He felt like playing. The hair loss was no big deal. He’s predisposed to male pattern balding, anyway. So, at least we’re aware that he has the perfect head for his future.
In looking back on his induction therapy, I have to say that the absolute worst piece of it was his bone marrow transplant. His own stem-cells were collected for this therapy. This collection coincided with the birth of my daughter in April of 2004. I spent less than 24 hours at Riverside Hospital in labor, giving birth and having one night of uninterrupted sleep before heading back to the neuroblastoma trenches while Ben gave up stem-cells through a catheter in his leg at Children’s. These were stressful times.
When it was time for Ben to use those collected stem-cells, Madeline was five months old. When we first met with the Bone Marrow Transplant (BMT) team, they gave us a crazy list of rules. They also said that we’d have to find alternate living arrangements for my Madeline, because Ben was going to be super sick and couldn’t be exposed to ANYTHING. Their words were, “We have to take him to the edge of killing him and hope the infusion of the stem-cells bring him back from the brink of death.”
I looked at them incredulously and thought to myself, “HOPE? So, you’re going to HOPEFULLY not kill my son AND I have to be separated from my daughter for however long it takes for him to recover? NO, thank you.” I played the “breastfeeding card,” much like how I’ll occasionally play the “cancer card” to get my way. Oh, don’t judge you bunch of Judgy-Judgersons. You’d probably do it, too. Work with me here.
Finally, the doctors relented and I got what I wanted. In hindsight, I probably wouldn’t make that same choice again.
BMT was horrible. The first days were not so bad while the highly toxic cocktail of chemo dripped into my beautiful toddler. I tried not to focus on the list of emergency meds someone had taped by the door “in case of” any variety of emergencies. I think that is what really registered as letting me know that this was some serious business. Ben could die at any given moment. And my infant and I were locked in to witness it.
The next few days Ben started getting mouth sores. They were so horrible that it looked like a bomb went off in his mouth. He received IV nutrition throughout to keep him afloat because he couldn’t even eat ice cream without it hurting. He threw up copious amounts of green bile until there was nothing left. The heaving continued but he had nothing left to give. It hurt to see him in so much pain.
There were times that I’d try to hold him but his whole body hurt. His skin hurt. His life hurt. One day, I had him balanced against my shoulder as I rocked Madeline in her carrier with my foot. Ben drifted off to sleep. It could have been because he felt safe in the arms of his loving mother, or it could have been the ridiculous amounts of morphine coursing through his system. Let’s go with the former even though it was probably the latter. 🙂 Anyway, when I went to lay him back down in his bed, I noticed that my shirt was covered with blood from his seeping mouth sores. I had no choice but to cry, mourning the fact that no child should ever have to experience this hell, let alone my own precious child. It broke my heart.
Then there was the night he almost didn’t make it. The night that I was sitting in my reclining chair, completely unaware that his oxygen levels were dropping. The alarm was silently screaming in our room but, thankfully, it was not so quiet for Ben’s nurse. She came rushing in as fast as she could (there are many precautions you must take before entering a BMT room, so it’s not a super-quick process) and she started reviving him. I stood by in shock as I watched her pull lengths of stomach lining out through his mouth. He had been choking on it, but nothing had visually registered for me. He didn’t thrash. He wasn’t coughing. He just stopped moving. Only the monitor knew what was going on. The nurse pulled the bloody eel-looking chunks out and eventually he was all better. But not before she pleaded with him “don’t you dare die on me.”
I was going to need therapy. Lots of it.
There were lots of reasons why the BMT process was horrible, but that part was probably the worst. And after 31 days of isolation, he was finally permitted to go home. My weak and exhausted son lit up when we pulled up to the house. He insisted on walking himself up the slight incline to the front door despite his semi-atrophied state from not using his legs for a month. He exclaimed in his sweet toddler voice, “OH! I’m home!” It was the first time in a long while that I felt that it was going to get better.
Of course, when we had to go back to the hospital two days later for a checkup, Ben cried hysterically. He thought we were going back to jail and he wanted no part of it. He had to be reprogrammed that not every visit was going to be weeks of isolation and near-death experiences.
As for me, I survived, too. I’ve had extensive therapy surrounding this particular piece of Ben’s treatment. I harbor a lot of guilt and anger and downright devastation over this 31-day period. And, it’s been determined that I do suffer from some PTSD. Certain things trigger horrible reactions. Smells. Sounds. Ugly memories.
I’ve worked through a lot of that trauma over the last nine years. The experience didn’t kill us. It broke us, but didn’t kill us. And, eventually, it did make both of us stronger.
But, for whatever reason, I still cannot bring myself to order a BMT footlong from Subway. It is my favorite Subway sandwich, and I’ve considered asking their Corporate HQ to rename it solely for my benefit, but I suppose I have bigger battles to fight. I think I will gauge the success of my recovery on this: to order a BMT will announce to the world that I have successfully endured.
I have hope. Hope to end neuroblastoma and hope that I will once again enjoy a BMT without a flashback. A girl can dream, right?