Today is the 7th anniversary of Joshua being diagnosed with stage 4 Hodgkin's Lymphoma. He was 9 years old. I allow myself this one day every year to stop everything I can and be 'in the moment' with my memories and emotions. This year I had to work. Though that's a blessing, it was also a very tough thing to do. I'm glad to be home now.
Read on if you choose.
Monday, September 11, 2001
Morning: J and I are in the department of Nuclear Medicine's waiting area at the hospital watching some airplane hit a building in New York. Awful, but I can't focus on that now. His name is soon called.
Holding Joshua's hand while he lays very still. This is our second time here so we know the routine. The scans are done 48 & 72 hrs after the nuclear agent is injected (through the broviac catheter that was placed in his vena cava, during the same surgery in which they took his right clavicular lymph gland for analysis three days before.) A huge machine moves silently around him.
I'm talking to J (endless prattle really, he's not supposed to move) and simultaneously watching a screen light up with glowing spots I can't interpret in roughly the shape of my child, while John the nuclear med tech has his computer on for news of the towers.
I'm in a different world from John, but both of us are in our own state of shock. I don't understand his. Never will.
10:30ish comes and we're done. Securely wrapping the catheter to J's chest, I take him back home. School isn't an option until we know what's wrong. It makes Avivah angry and J misses his friends. My family has rallied around us but my friends don't know yet. He wants his peers and the normalcy he knew a few days ago. Can I ever sympathize.
We spend a quiet couple of hours together. His dad comes home from work early.
2 p.m. Our appointment time for the discovery/diagnosis meeting with the pedatric oncologist. J is at home with family and V is still at school. Tim and I are called in and are shown a seat in a meeting room. Soon we're joined by Dr. J, a nurse and social worker. Everyone is introduced and files are opened. I'm wide-eyed at the formality.
Cutting to the chase, Dr. J tells us that we have a sick little boy. He has Hodgkin's Lymphoma, Nodular Sclerosis. Neither T nor I really know what that means, although as usual I've done some reading. Nothing can prepare you for those words to come out of a Drs' mouth when discussing your child. "It's a type of cancer of the blood" he adds. Dr. J stopped talking and looked through the papers in the file in front of him again... T and I sat, numb.
It seems that the results from the morning's nuclear med test isn't in yet and must be retreived via phone to get a full diagnosis (i.e. to 'stage' the lymphoma's growth). Dr. J places the call still sitting across the polished table from us.
In the course of the phone call we learn that it is Stage 2 (not so horrible in the scheme of things). "Oh, no", says the oncologist, "Past the diaphragm? Yes, Stage 3." (not so good). "Ohhh", he says again, "Past the pelvis? I see", he says... "Stage 4" (the worst, furthest progressed you can have). And there we had our staging. Stage 4. Shit.
During this whole thing the nurse kept trying to give us an average prognosis (I think this was supposed to help us feel - better?)... well, at stage 2 was an 80% chance of being cancer-free in 5 years. Stage 3 was 70%. Stage 4? 60%. We didn't feel better.
Dr. J was off the phone and going back to his papers. He had a notebook with him that outlined the different protocols for this type of cancer and he proceeded to tell us his recommended protocol for our son. It was so incredibly hard to focus on the fact that we're making choices for and discussing my baby and his life. In that moment all of our lives seemed to hang in the balance.
The rest of the meeting was spent discussing every step of the protocol and each chemo concoction to be used. The nurse gave us some general ideas of what to expect, like when he'd lose his hair, how long appointments might take, how to pack for the hospital... The social worker talked at us about some practical things. School was a big issue. Financial issues, support, organizations that could help, phone numbers galore, what entrances to use in the hospital to get to pediatrics quickly...
Hospital, right. When? No time to waste. Today. This very afternoon. Decisions made, papers signed, books given to us to track every moment of our lives for as long as we needed to, and we were off to the house to tell our precious son and waiting family everything we'd just learned. That was a blur.
I never allowed that moment to envelop me. I cried, yes, but there were things to be done and a fight to be fought and a child - my child's very life was the prize that we would win... if we won. I packed his favorite things and we were off to the battlefield before 5pm.
6 days ago