September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Chrissie Lograno-Weinstein
I always said things change in the blink of an eye. It was true for Michael’s diagnosis and was certainly true during his cancer journey. We were reminded of that again in July, 2014 when Michael was eight years old & had been fighting brain and spine cancer, Diffuse Oligodendroglial-like Leptomeningial Tumors to be exact, for almost six years.
As of July, 2014 he had been on five chemo protocols which added up to more than 48 months on chemo, he had more than ten surgeries and was diagnosed with Autism, Cerebral Cognitive Affective Syndrome (essentially a TBI caused by the tumor) and Gastroparesis due to the brain tumor shutting down his gastrointestinal system.
In February of 2014, while on chemo, Mikey’s tumors started hemorrhaging in his spine. His immune system was depleted, which made surgery much more risky. Thankfully, they were able to stop the bleeding and get a piece of tumor to do testing on. In talking to our teams at MSKCC, All Children’s and Golisano Children’s in March, after he recovered from surgery, we all felt that his tumor was so slow growing that he could stay stable enough to bounce back a little, get stronger, and buy us time to come up with a plan. We made the decision to take a break from treatment and just control pain and manage symptoms until scans in August.
On July 20th the palliative care doctor, Dr. Mac, came to our house. Michael’s decline was so atypical of a brain tumor patient & we knew we could be dealing with the slow and steady decline for years. Dr. Mac determined that Michael, who was chasing Katie & Timmy around the house during his exam, was still stable enough to be considered on ‘comfort care’ and hospice wasn’t necessary yet. We breathed a sigh of relief at the stability of our situation.
Four days later, in the blink of an eye, our world crashed right in front of us shortly after bedtime. Matthew and I both noticed a change in Michael’s breathing. I didn’t know what was causing it or why it was happening so I called Dr. Mac. I wasn’t sure how to describe it to him other than to say, ‘he’s taking 2 breaths then not breathing, then 2 breaths and not breathing’. The time in between breaths was just ten seconds when I timed them, but they felt like ten minutes.
With Dr. Mac on the phone, Matthew and I changed Michael’s position, we moved him from side to side and we elevated his head more. His breathing was more regular as we did that. On the phone that night Dr. Mac told me our game plan had changed and he would be out that weekend to talk to us about Hospice care.
On Sunday, July 27, 2014 Matthew and I met with Dr. Mac around our dining room table. My aunt took Katie and Timmy for the morning so we could talk while Michael slept. Words like Hospice, vagus nerve and DNR were discussed in the same place we had breakfast that morning.
In doing an exam and knowing the diffuse nature of Michael’s tumor, Dr. Mac said that the tumors were likely causing more pressure on the vagus nerve. We knew of vagus nerve involvement from the diagnosis of Gastroparesis in November of 2013, but we hadn’t expected much more to be affected so soon.
I couldn’t breathe. Hospice. Seriously? My son? He was only eight. He laughed and played and chased his brother and sister around the house. He lived up to his nickname of Mighty Mikey in every way. He taught his grandparents how to use an iPad for FaceTime and iMessage. He shopped on Amazon and E-bay like it was a full time job. He idolized anything Jim Henson created and sang Sesame Street and Muppet songs every waking hour. He had a larger than life personality and a hug that could melt the coldest of hearts. He was going to be the next Ernie Puppeteer on Sesame Street.
Hospice? My son? Impossible. I couldn’t wrap my head around it. We didn’t tell anyone but our immediate family. In my head I felt like once we told other people it would be real. And it couldn’t be real.
Five days later Michael and I flew home to NYC where we met with his primary neuro-oncologist who agreed with Dr. Mac. We both said this was the conversation we hoped to never have. The vagus nerve was so compromised that the decline we would begin to see was going to happen faster than we had been accustomed to and cause more and more life threatening issues until, one day, the vagus nerve would damage so much that his body wouldn’t be able to compensate anymore.
No one could give us a specific time frame. We were told he probably had longer than six months, but he most likely wouldn’t be here the next summer. We were told to think about how we wanted to proceed, to decide what measures we wanted to allow to be taken.
We cried and hugged our neuro-oncology team in MSKCC, spent some time in our hometown of Rockaway Beach, NYC with family and our closest friends. Michael’s dream came true that week when an amazing friend took him to Jim Henson Company Workshop where he was able to actually see and touch the puppets he loved so much and considered his friends.
We flew home after a few days back in NYC. The reality was hitting. The DNR was signed after many tears and a lot of thinking. We had to deal with the fact that the brain cancer that was diagnosed when my little boy wasn’t even 3 yet, was destroying the one nerve that controls so much of the body. It had already taken over his gastrointestinal tract causing him to vomit upwards of 10 times a day. It was causing changes in his breathing that the doctors told us were only going to get worse. Over the course of the next nine months his legs stopped working; he developed tremors in his arms, hands and legs; his breathing got worse; his kidneys started failing.
Through all of that we made sure to laugh and sing and play as long as he had the energy for it. He shopped on Amazon and E-Bay. We went to Disney World to meet Constantine of the Muppets and his puppeteer. We made hand print art and plaster hand castings. We went to Busch Gardens for the sole purpose of getting a picture of him with Ernie. We celebrated his ninth birthday, while he was a hospice patient, in Disney World. We had family and friends visit. We indulged his love of all things Sesame Street and The Muppets for as long as we could.
On May 13, 2015, holding my hand, and while he was being held by Matthew and myself, Michael, our Mighty Mikey, passed away. The cancer destroyed his body and took his life. Along with Michael’s birth certificate we now have a death certificate for our nine year old that reads, Cause of Death: Cancer of the Nervous System.
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