The Final Week
Robbie fought with every ounce of strength he had left. It proved not to be enough as the lung disease proved stronger and more insidious.
Over the last few days, he was having increasing difficulty breathing. The constant dry cough led to more nausea and no amount of antiemetics seemed to make him more comfortable. As a result, he wasn’t eating enough and was losing weight fairly quickly, down 6% in the last week. He endured multiple CT scans, electrocardiograms, ultrasounds and x-rays all ruling things out but not finding a cause. As a result, there was little choice but to do a biopsy and it was determined to work on only one side to minimize the risks.
A simple lap around the hospital floor proved too taxing for him on Monday. He was struggling and on Tuesday told Deb that he wanted to fight on but was feeling really tired.
The scheduled biopsy had to be delayed a day since he wasn’t clotting well enough. Finally, on Wednesday he had the procedure. He was anxious all day long and couldn’t focus, until finally Deb pulled out some cards and kept him distracted. The actual biopsy took longer than expected because they found an excessive amount of fluid building up. When he came back, he seemed better, no longer coughing or nauseous. However, he still struggled with his breathing switching between a variety of masks and delivery methods, none of which made him comfortable enough to sleep.
3:30 Thursday morning, he was lacking the energy to move much because there was a build up of carbon dioxide in his blood. They switched his breathing gear and he rallied quickly and was lucid. They discussed the possibility of intubation but he made it clear he didn’t want it.
They continued to check his blood gases and the numbers were horrible. Just before 6, I had to explain to Robbie he needed to be intubated. Again, he didn’t want it. Dr. Li explained that if Robbie wanted to fight, he needed this. Robbie took a pad and pen and scribbled, asking how long it would stay in. We didn’t know. He then asked would he be asleep for the procedure. Dr. Li assured him of this. Robbie finally nodded. He was put to sleep, given pain medicines and intubated.
The rest of the day was a blur. Deb arrived by 7 and we summoned Stephanie Massaro as our touchstone. She suggested having Katie come earlier than planned. If her brothers could come, they should, she suggested. It was clear then that he had hours and this was it. There would be no miracle answers from the biopsy (in the end, it appeared there was leukemia and two funguses in the lung tissue).
The level of support we received from the hospital staff was extraordinary. Jess, his favorite, came in from her day off as did others. Everyone from 7-West came around the corner to sit with us. Doctors from around the hospital who had met or treated Robbie come by. The entire oncology team assembled for hours on end and Stephanie stayed with us until the end.
Fathers Bob and Sam came and prayed, played traffic cop, door guardian and friend. They too stayed.
John, Jim, and Jeff arrived. A friend drove Deb’s mom down from the Albany area. Neighbors came bearing bag lunches so we could eat.
Erica and Kendra from Child Life took Father Bob to pick up Kate at the Amtrak station and prepare her for what was happening. All through this, the ICU team added medicines, blood products and extra arterial and femoral lines to measure or administer. Deb hated seeing like a pin cushion but they saw the need for him to still be with us for Kate.
The entire family sat with him for a while and then came the hard choices, the ones parents should never have to make. Dr. McCabe and Dr. Massaro reviewed them with the three of us. We agreed no heroic measures. No more blood products, no more medicines except to keep him asleep and pain free.
With incredible gentleness and compassion, his nurse Jill carefully removed various leads and connections, then washed him up with a lavender-scented soap Robbie had commented on liking the day before. He was then carefully placed under the quilt Deb had made him years before.
After a few more minutes alone with Robbie, the rest of the family joined us. We all sat in silence and tears, watching him breathe, glancing at the monitors to see how remarkably stable his condition had become during the afternoon. It was difficult knowing it was all because of the medicines and breathing equipment.
The Fathers came in and led everyone in prayer. We sat with him and around 7:30, as the nurse shift change occurred, many more came by.
Once they had left, we sat with him for a while until finally Kate and Bob couldn’t keep watching. Deb didn’t argue but didn’t one to be the one to tell the doctor. Bob went outside and told Dr. McCabe it was time.
Quietly, the various devices were turned off and the room monitor was shut down. We were told it would take an hour, two tops. The three of us sat with him, holding his arm, his grandmother on the other side, murmuring prayers.
The final minutes we could see his chest slowing down, the breathing machine taking more time between breaths. In the background, nurses were watching, occasionally stepping forward to suction blood and mucous from his nose and lips.
He shuddered a few times and Stephanie Massaro stepped forward and let us know this was natural and he wasn’t feeling anything.
Around 8:25, Dr. McCabe came in, listened to his slowly moving chest and told us he was gone. The breathing machine was silenced and we all sat with him for just a little bit more.
Bob did not want to come back for his belongings. The first thing he did was remove the plastic Smiley face from his door and brought it to the door of the nurse’s room on 7-West. The nurses quietly removed the last of the lines and prepared his body.
We said our final farewells and left the room.