A year ago today we were seated in the window seat the doubled as my bed for the 15 days we stayed at Lurie Children’s Hospital in Chicago. We sat, Aaron and I, with Dr. DiPatri, Adler’s neurosurgeon, and his colleagues as they told us what Adler had. He sat next to me and Aaron ended up standing, his hand gently on my shoulder as the words came out of the doctor. He said Adler’s biopsy showed that he had Pilomyxoid Astrocytoma which is a low grade glioma or tumor. He didn’t mention the word cancer yet. It wasn’t his job to give us that information, though we knew it was coming because we were to meet Adler’s oncologist the next day. I mean, we weren’t idiots at that point we knew what it meant but it didn’t even begin to register yet to us the magnitude of that word that was going to be spoken in a closed small room down the hall from the once uncomfortable patient room that we now made a home away from home since we had been there awhile. Dr. DiPatri explained everything in great detail but also with finesse and caring like a normal human, not a super human brain surgeon that had already saved Adler’s life once with his shunt only a mere few weeks prior. He told us that Adler’s tumors we not operable due to their locations in the brain and spine. He has 2 spots on his brain that house around 10 small tumors. He described like a donut rolled in sugar and if you scraped off the sugar you would damage the donut, so he couldn’t remove the tumors with out damaging the brain. And the tumor that is in Adler’s spinal column is in what he referred to as the meat of the hot dog, is the same thing, you cannot remove it with out damage. It’s located between C6 and C7 in the cerebral spinal column which is the neck area. It’s amazing how quickly through Adler’s misdiagnosis of arachnoiditis and now brain and spinal tumors and hydrocephalus I now know the ins and outs of the nervous system and the function of it and the definitions of words I never thought I would need to know are now necessary. He also has an area in the lower lumbar spine that is “thick” with the same material that is in the other tumors that lights up when he has his MRI’s. That is where his biopsy was taken from. And they feel it’s all the same through out his nervous system. And that may be what is causing all his pain in his buttocks.
I sat in awe of this man sitting next to me. He is a very big guy. Huge hands that do such intricate and delicate work on children’s brains. I am fascinated by him and his work and how Adler fell in love with him and he with Adler. He seems like a sweet man wrapped in a tough décor due to his work but Adler has such a way of melting away the layers of most people and Dr. DiPatri was one of them. He is now our Aquaman according to Adler! He even gave him one of his action figures before we left the hospital and it rests on his window sill in his office now as we would set up scenes of the action figures in the window sill of Adler’s room.
I don’t quite know how to feel about today and tomorrow marking the one year anniversary of Adler’s diagnosis. The word cancer wasn’t said yet, though we knew it was coming. Chemotherapy was our option to try to shrink the tumors because they inoperable. Of course they are. Adler is an enigma to them. His pain at this point they assume it’s from the tumors and their locations, but they still aren’t sure. The hydrocephalus has nothing to do with the tumors either. It’s like he is a riddle, wrapped in a puzzle for them to figure out. They also told us that day that the Palliative Care team would come on board to help manage his pain. That’s the hospice team. Scary, right?? But who better to keep him comfortable than an end of life care team. The fentynal patch was mentioned and they began him on morphine again, as they had tried many other drugs during those several days we were there just for pain management.
We weren’t ready for cancer. We had no idea how to handle that word yet. It was one of the first storms to brew inside my body and mind since the arrival of our family the first time we went to Lurie with out a clue what was wrong with our son. He was dying in front of us and we had to save him. The waves of emotion that can come just from waiting are beyond anything I have ever felt. It’s palpable, it’s alive, its all consuming and dreadful. The sensation of being trapped under water being hit wave after wave is known to me emotionally. I haven’t quite learned how to breathe between scans yet, but I am getting better.
They left the room one by one and we were left to look at our son laying in that hospital bed covered in his super hero blanket watching YouTube on the TV knowing there was now a name to what was wrong with him. I couldn’t cry yet. I couldn’t hurt yet. That was all coming the next day after the words “yes, your son has cancer” were told to us after we asked. I walked to my parent’s apartment 4 blocks away to take a shower and tried so hard to lose myself and my thoughts in the crowded, aggressive, loud city but I couldn’t drown my thoughts with noise or anything. I was so in the moment that it was terrifying. Pilomyxoid Astrocytoma, was the first thing I looked up on my phone as I told my mother and we talked. I tried to wash away the fear and the despair with that shower but it didn’t work. That was the night I looked out to that 19th floor window and tried so hard to see a star in the night sky as the peaceful channel played those same songs over and over again and I couldn’t pray. I just couldn’t. I found myself so lost in thought. I slunk down off my pulled out couch to the 2 egg crates that Aaron slept on and curled up beside him and we just held each other. Scared and confused and bewildered by our own thoughts. The IV pump creaking and the monitors dinging in the room next door. The light from the hallway pouring in our darkened room only lit by the TV that stayed on to give us the music to lull us to sleep. And I moved back up to my spot and covered myself with my 3 blankets and tried to fall asleep into a land of dreams and I just wanted to go home. I wanted to be in our bed with our stuff, smelling like our home. I was trying not to let anger set in either. Not yet, that came later. So to sleep I went with the help of one more pill and awoke to the sun through the constant fog that surrounded our window and the nurses and doctors checking in knowing today was the day we would meet Dr. Lula, the neuro oncologist and find out our son had brain cancer. And our life would be capsized in that storm in a matter of minutes. Deep breaths…..Deep breaths…….