Cushion kingdom: Grady + Pablo + Peter threw every cushion in the house into the stairwell, and jumped in. Major fun on a majorly strange day.
Note: Please read this as if it were yesterday. I wrote this entry yesterday. We decided not to post it until this morning.
I sit and stare at the blank screen.
For the first time in 11 months and four days, the words don't effortlessly flow from my fingers. Tears are the only thing that flow without effort today.
Since mid-afternoon, Jo Ann and I have sat in our bedroom with Peter and Brie—four people blockaded in a cosmic bomb shelter. We've wept. Cursed. Contemplated. Held one another. We've let the light in. We've stared at one another's souls. And we've wept more. The entire time we sat in our bomb shelter, bombs were going off above us. Pablo and Polly—later joined by Grady—pounded the floor above as an afternoon of cops n robbers reached epic heights.
Upstairs: hours of laughter and sunshine.
Downstairs: hours of sorrow and spiritual free fall.
This morning's CT scan revealed three spots in Pablo's lungs.
It's that simple. It's that complicated.
Dr Mascarenhas looked shell shocked when he walked into the exam room. I inherited Dr M's shock. Overall, our guard was down. Polly wasn't even with us to take Pablo to the playroom during the medical meeting part of the exam. For 11 months, Polly has been with us every time we've met with Dr M. But Pablo's been happy, scrappy, grinning and playful, so we had her stay home.
We walked into the room thinking the worst was behind us. But then the worst was right in front of us: the cancer has recurred. Dr M believes the spots are anaplastic Wilms' tumors. There is no way for him to know this for sure by looking at a scan. What if the spots are a few random bits of blob left over from his infection a couple weeks ago? Jo Ann asked him how certain he was, based on his experience. His answer: 99%. A full biopsy is not possible—Pablo's body is too fragile for a major surgery. And the recovery from a procedure that would cut his chest open would be just too intense for him or us to handle. The risk outweighs the medical and quality of life benefits by an order of magnitude of about 10.56 trillion.
There is one surgical option that could disprove the recurrence: a laproscopic biopsy. It's minimally invasive, and would not require his entire chest to be cut open. And one of the spots is positioned perfectly for such a procedure—it's on the rib side of the lung and could be easily accessed by Pablo's surgeon, Dr Stein. In order for this surgery to be an option, Pablo needs a couple other tests this week. We are expecting to have those scheduled by the end of today. This is our beacon of HOPE.
Dr M and Dr Stein have put time on hold Monday for the procedure.
I am shattered. Jo Ann is shattered. Grady + Polly: shattered. Pablo: smiling and just wants to have fun. Why doesn't the cancer in his body compute and go away?
But still, in the face of nine months of chemo and a round of radiation, the cancer has recurred. And there is very little, if anything, that Dr M and can do for Pablo. His body has taken all it can take in the way of treatment. We knew that if Pablo's cancer recurred in the two years following treatment, we'd be in a tough place. He's received elevated, aggressive levels of chemo over the last 11 months. It's not like his little body can take it forever. There is a potential clinical trial that Pablo can participate in. We won't know enough about Pablo's eligibility until early next week. It's complicated. It's not easy. And there is no guarantee it'd prolong Pablo's life. Jo Ann and I do not want Pablo to be a patient for the rest of his time on this earth. No way.
Pablo's life. I want to punch the screen again. My mouth is tasting metallic again. Why do I have to write those two words—'Pablo's life?' Why? Why can't my little boy just live his life? Why is his life going to end too soon? Why can't he get a second chance? I want to punch the screen so badly I am shuddering. The facts are the facts at this point. We have run out of moves. If the options are proven to be not viable for Pablo, Dr M estimates that Pablo has three to four months of life left.
Our dear friend and one of my guides in this world, Sean McFarland, came over after Peter and Brie left. He has been a friend of mine for nearly a decade, and has known about Jo Ann since I was thinking about asking her on a date. Sean is someone Jo Ann and I have taken counsel with many many times over the years. He is my sponsor in recovery. Sean has known Pablo since he was in the womb. His own son, Dylan, is two months younger than Pablo, and we have watched our boys grow up together. On a moment's notice, in rush hour traffic, Sean drove all the way to our home in Silverlake from his office in Venice. He sat with us in our bedroom. He listened. He gave feedback. He told me to stop running the tapes. He always tells me that, and he's always right. And that's why I am not punching the screen right now.
Grady is so interested in what I'm writing that he's sitting next to me waiting to read my words. He came home from school, we broke the news to him, and he walked out of our room. He changed out of his school uniform and played with Pablo for five hours straight.
A minute ago, he was downstairs. I heard his voice. It said, 'I love you Pablo.'
Pablo's tinier, but surprisingly husky voice volleyed back: 'I love you too, Grady.'
There are no easy answers for our family today. I am out of hopeful, tuneful things to say. If you want to know the truth, I am f***ing sick of everything. I don't want to be in this world without my son. I don't want anything in this world without my son. I can't be hopeful about that. I can't.
The boys will sleep in our bed with Jo Ann. I will sleep at the foot at the bed in the orthopedic-prescribed Lazy Boy recliner that Acacia and Josh from our office picked up for me this evening. I got zero sleep last night. The back hurt too badly.
We love all of you.
We are all exhausted.
We are going to sleep.