He started his recovery in the Oncology Isolation Unit waiting for the healthy stem cells to set in, but on September 13 was brought to the ICU to be sedated and intubated – the “engraftment syndrome” from the transplant that eventually led to his death had begun. Of all the days we took care of Dad, this was the scariest and still the most haunting for me. And the only part of this timeline where my memory is fuzzy. From the elevator ride down from the 10th floor to the ICU carrying all of his belongings and trying to keep him talking I wasn’t comprehending the severity of the situation. I can’t believe how calm he was. He kept his usual smile and polite demeanor when I would have been panicking with that many doctors surrounding my bed and whisking me away to an emergency floor. I had gone through 10 years of watching his treatments, testing, biopsies, hospital stays preparing for when shit really hit the fan, but I wasn’t ready for this, and let that fear cast a shroud of denial over my eyes as I watched doctors wheel him into a corner room on the 5th floor ICU. Mom was on her way over, but I was the only one from his Health Care Proxy present and I couldn’t make out what was happening. As a caregiver you prepare for chaotic moments like this, but unfortunately you will still go blank and hear mumbled, Charlie Brown schoolteacher-like voices as doctors and nurses are asking your permission to perform medical services on your loved one. I still don’t really know what happened. What I can remember is a nurse and a doctor with a long white lab coat blocking me from entering the room where they were working on Dad, and I somehow OK’d the various tubes and lines they needed to put into him.

He was on life support for seven days (plus dialysis for a few days due to one functioning kidney). We played music for him, had baseball games and analysis shows in the background, spoke to him and to each other in normal conversation so he could hear familiar voices. Then on September 20 he came back to us – he was extubated and was on a (slow) path to be cleared from the ICU to return to the 10th floor. He was loopy and in a daze but he was slowly making progress breathing on his own, trying to speak to us and begin PT/Occupational Therapy. It was clear that he had an enormous will to bounce back from this latest myeolma episode like he had done so many other times in this decade.

He was also not very happy with me being there. Since his diagnosis Dad tried to shield me from what was going on with his health. I was a sophomore in college during his first transplant and only saw him in his isolated recovery room for one day during the entire month. It was a little bit wanting to protect me, and a little bit wanting to retain his manhood by not looking weak in front of his only child. I’ll never understand his mindset holding things back from me when it came to his health, but I learned to respect it and realize it was his choice. Unfortunately by this point he didn’t have a choice anymore. Mom was working and overseeing a contractor who was refurbishing the apartment for Dad’s return. There were days or hours I needed to step in to take her place. In this week in particular, as much as he wanted to block me from seeing the state he was in, he couldn’t be alone whether he was conscious or not. And if it had to be me and not Mom in the room with him, this time he was the one that was going to have to let that go.

I’m glad I defied his wishes, because we didn’t know then that we’d only have one more week of lucidity with him. On September 28, seven days after he came back to us and was about to be sent back to the Oncology floor, the medical team finally realized Dad was spiraling because of an infection they had never seen before (“Mucormycosis”) and put on life support again. This is when everything went speeding downhill. Mom was there most of the day and was able to call me to rush over. I will never forgive myself for conducting a job interview (which I still have yet to hear back from) on what was Dad’s last day of consciousness with us, but I am so grateful to Mom to keep them from intubating him again until he and I could have just one more minute looking at each other. On September 29, erev Rosh Hashonah, he was brought in for emergency surgery late that night – they had to take out 90% of his stomach and some other infected tissue. We were told that we needed to wait a few days for them to wash out the stomach and esophagus to see if they can close him back up and get him to recovery again. By October 3, after hours of my mother and I bargaining and mapping out plans for how we’ll take care of him when he comes home, when and how we will clean/replace his feeding tubes until the next surgery a year later, it was made clear to us that there was nothing more they could do. The infection was spreading rapidly and couldn’t be stopped. We reluctantly adhered to Dad’s living will, and his wishes to observe Jewish medical ethics – to stop aggressive medical treatments and prolonging an inevitability if it was going to result in an impossible quality of life. We made the choice nobody ever wants to make for a loved one and haunts them the rest of their lives – to discontinue life support, “pull the plug”.

And so by about 9:00 p.m. on Thursday, October 3, we made Dad as comfortable as possible. The staff removed all of his machines, tubes, everything attached to him. We put on the NLDS so he could hear baseball one last time. First the Cardinals took Game 1 in Atlanta, then the eventual World Series champion Nats were shut out by the Dodgers, and then silence. At this point Mom and I sat there not knowing what to do or what to say to Dad. He couldn’t respond. We didn’t know if he truly could hear us. So we sat on either side of his bed waiting for some miracle to happen. I recited Dylan Thomas’ ‘Do Not Go Gentle Into That Good Night’ to him, a favorite of ours purely because of its use in Rodney Dangerfield’s ‘Back To School.’ We played his favorite songs from The Beach Boys, Al Green, Parliament Funkadelic, Supertramp, Lovin’ Spoonful, Led Zeppelin, The Spinners, Jr. Walker & The All Stars, REO Speedwagon, and more. By the time Santana’s Oye Como Va was playing, the red lights started flickering and it was happening. I turned the music off, then Mom and I held on to him as long as we could. Mom on his right shoulder speaking to him tearfully, me collapsed with my head on his heart, my left hand in his, and my right arm on his shoulder because for some reason I naively thought I could pull him back to us. At 4:00 a.m. on October 4, 42 days after being admitted to the hospital, seven hours after he was taken off of all machines and tubes, he was gone.

Just like in 2009 during his first transplant, Mom and I posted many of these updates on various platforms to get the message out – it was easier to send a mass message to the various communities Dad had been part of, filled with hundreds of people who cared deeply about his well-being (especially the rare disease community Dad had been helping on Twitter for so many years). At that time Caring Bridge was the only source of mass-messaging, and having outlets such as Twitter and Instagram this year made the messaging process so much easier for the three of us. We kept personal communication to a minimum because frankly we couldn’t handle it. We could barely handle writing to you all that there was nothing anyone could do anymore. During Dad’s last few weeks, and these past two months of our first Thanksgiving, Anniversaries, Chanukah, Christmas, and New Year’s without Dad – Mom and I have been accused of caring about on-the-surface-only gestures, not having as big of a heart as others, being unsupportive & selfish, ignoring people’s efforts for us – all because we didn’t respond to a message, or say thank you in a more lavish way catering to over-sized egos. All I have to say to these people is you’re right, I don’t have as big of a heart as you. A turbulent year filled with taking Mom to radiation for breast cancer, picking up Dad from chemo (sometimes both of those on the same day), losing my job, six months of no income not being able to support my family plus constant ghosting from recruiters and interviewers rather than a straight up “you didn’t get the job” while trying to stay strong for both parents at their respective cancer treatments, driving Dad everywhere because the bone lesions and rapidly spreading cancer prevented him from walking comfortably anymore, and at the end of all of that being faced with the decision to pull the plug on my own father – it broke me. And feeling his last heartbeat after he was supposed to be fine, feeling him lose a “battle” he was never going to win, broke my heart.

If you stuck around by this point and would like to add a pinch more of sadness to your day – the below is my eulogy to him in which I tried to comprehend the timeline you just read. How Dad’s long-time medical, oncology, and transplant team could let him develop Mucormycosis and dangle our hopes of him being ok in front of us only to rip it away in a flash. Or, was it us. Did Mom and I truly make the best decisions possible when Dad couldn’t make his own? Was there something we missed, or didn’t think of? Did I fail him?

We are truly grateful for everyone’s support during this time, and there are a lot a lot a lot of people we have been thanking. But for this particular moment i’d like to say a very special thank you to Katrina, Sarah, Jess, and Chelsea for their edits on this eulogy. I could not have gotten through the following difficult, overwhelming piece of writing without your help.
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October 10, 2019

We are incredibly humbled at the outpouring of love and devotion so many have shown our family these last few days, and especially grateful for the various obituaries, stories, and anecdotes hundreds have shared about Dad’s character. It’s comforting to know how many loved and appreciated him, and how many of you view him the way I do. It was especially beautiful to see so many stories pop up in such a short time-span, and luckily everything you have posted about Robert Malcolm Tufts I saw and experienced every day of my life. Despite having a week since his passing, it still feels like not enough time to prepare a highlight reel of all the contributions and sacrifices Bob made as a devoted father.

Through my eyes he wasn’t defined by the labels of baseball player, Ivy Leaguer, Cottage man, businessman, neighbor, Professor, cancer patient or advocate. Through all these avenues he had a life well lived, but those weren’t his greatest titles, nor were they his most important roles. He was a great father who inspired me no matter what he did, who loved me unconditionally and supported any path I chose while cheering me from the sidelines. He never pressured me into any one direction. Whatever I chose, he was always ready to go along for the ride while packed with his insights, guidance, and comfort as my roadmaps. And because of that support he was a confidant, mentor, and best friend I wanted to tell everything to.

Aside from all of that, I love him because he was a great man. He was a unique mix of illuminating and shy, brilliant and modest, passionate and dignified, handsome and approachable, serious and humorous, clever and introspective, and all around just the most genuine guy you’ve ever met. He cared about me so much that he paid just as close attention to the friends I cared deeply about and treated them as if they were part of the family. That’s because he was the kind of man who could be comfortable in any environment. He could immerse himself into any situation, treat each stranger with respect, and enjoy the company he kept. And even when the only time we could spend together were his chemo treatments, he treated it just like every adventure we had taken together and didn’t waste the moment.

Those of you who knew Dad’s sense of humor can appreciate that he never lost it while in the hospital, even on his worst days. Two weeks ago, on a day where physical therapy was too intense, too painful to get through – I offered him some Pepsi as promised for a job well-done. As I brought the cup to his hand and straw to his mouth, after a refreshing sip he said with a sarcastic, undefeated grin on his face “I’m a big boy”, giving his PT specialists a good laugh. He faced the toughest challenges and roadblocks life could offer, and even in a moment of defeat and inability to talk much he still pulled out a joke.

Despite his reserved nature, his visible affection and unflagging support for my mother was always clear. There are nearly 40 years that culminate a beautiful yet fierce love story with dozens of ways Dad cared for Mom, from hand-written, long-distance love letters, to travel, to creating a family and life together. The love never ended, and his heart and devotion to the woman he treasured was clear every time I’d watch them interact together.

That love and adoration was never more evident than in his final moments of lucidity with us. As Mom and I were describing what was happening to him, with a slew of doctors and nurses surrounding his bed preparing to put him on life support one more time, he turned to me with a look I didn’t recognize, something I had never seen on him before and couldn’t read at the time. It was fear, a feeling of helplessness and bewilderment and a stare so deep as if it were the last time. Which is why he then turned to Mom with all the strength he had left, lifted his arm up as high as he could, and stared into my mother’s eyes while holding her hand, never wanting to let go of her. His last image was his soulmate, the love of his life who gave him everything she had to keep him happy, healthy, and alive throughout their partnership, especially since his diagnosis in 2009.

We sat with him until the end of the line, with 2 back-to-back postseason games playing in the background, and then a Spotify playlist worthy of a WPRB disc jockey, including our trio’s personal favorite – the Lovin’ Spoonful’s Darling Be Home Soon. Then the inevitable yet unimaginable was happening before our eyes. Our once indestructible trio was struck by this massive blow we couldn’t defeat together, and cancer was finally ripping our little family apart. With one soft, quiet, calm final breath, we lost a significant piece of our hearts and the most important part of our 3-person Army. A man worthy of so much was struck down too early in one of the most promising times of his life.