The Final Week
Posted by Bob Greenberger on August 15, 2008
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.
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I am saddened for your loss. Robbie was a great kid. I have seen him growing up over the years at conventions. You should be very proud of him. He will truly be missed.
Marie Bell
Dear Bob, Deb, and Katie,
Robbie was a light and a joy to everyone who ever knew him, and he will never be forgotten. His life mattered! He was a living example of how to live life well, and we all learned from his shining example.
My love and prayers are with you all.
Marilyn Mann
Lurker here with an aching heart and teary eyes… I have no words and no comfort I can give will make things easier for you… but I will be praying for healing for your family.
I spent the weekend camping in the Allegheny Mountains. At night, there was a gentle breeze and clear dark skies with a myriad of stars. That one extra bright and twinkling star had to have been Robbie’s light shining down on all who loved him. Robbie will always be a part of every one of us. Please know my heart is heavy as I send my love, my respect and my condolences to Bob, Deb and Katie.
We are so saddened by this news. Please know that you and your family are in our prayers.
Kit and I send our prayers and good thoughts for your whole family.
Bob,
I’m so sorry for your loss. I wish there were adequate words I could find, but there aren’t. Just know that your family remains in my thoughts and prayers.
Bob, Deb, and Kate–
I am so sorry for your loss. From reading this it’s clear that Robbie and all of you have a community that loves you and supports you–but I can only imagine the pain of this loss. Wish I were on the right coast, to offer more than word support. You’re all in my thoughts,
Madeleine
Bob, I just saw the news in a friend’s blog. I am so sorry for your loss.
Dear Bob, Deb and Katie,
I will always remember Robbie. He was a fantastic kid. Everytime I visited Pazzi, he made me smile… He used to love play his trumpet for us. He was a happy child. He was lucky to have such a wonderful family. My thoughts are with you. Lots of love, Sandra.
Bob, Deb and Katy,
The world is a little dimmer today, but heaven is a lot brighter.
Keeping you all in my prayers, may you find peace in your happy memories.
Bob, Deb, and Kate:
I have read through all of the above comments and condolences and stared at the screen for what seems like an eternity, and I still can’t find the right words. I’ve known Robbie almost from birth and, even though I only got to see him two or three times a year, I saw him grow into a very likeable young man. He will be missed by all, and the world is a sadder place at his passing. Look after each other, and don’t hesitate to ask for help.
Our thoughts are with you,
Dave, Mary, Hope and Rosie
My thoughts are with you
Bob, some things make no sense, and never can. You are in my thoughts.
Robbie was such a “gift” to all of us who have known him. I am sorry that I can not be with you today, but you are all in my thoughts.
Bob,
Just heard this on The Beat. Really sorry to hear this. My thoughts are with you…
all best
I am so very sorry. Love and sympathy to all of you…
I am very sorry to hear of your son’s passing. Please accept my deep sympathy at your loss.
Both Liz and I have followed Robbie’s fight on your blog. We are so sorry to hear about your loss. Our thoughts are with you and your family.
Jesus Bob, I’m so very sorry.
Bob, Deb,
I am so sorry for your loss. I will hug my children even more tightly tonight.
Please accept my most heartfelt condolences.
Bob, Deb and Kate:
Love, devotion, joys, sorrow…a rollercoaster in your life. I’m so sad to hear of the passing of Robbie. But you got to spend time, share life…and have so many fabulous and heartfelt memories.
I weep…yet I smile at what a wonderful family.
You all are in my thoughts.
Joel Thingvall
Bob:
Our deepest sympathy and heartfelt thoughts go to you, Deb and Kate. It is crushing that such a bright and beautiful light has left our world but Robbie’s bravery and strength remain forever. Pat, Grace and I always loved the times we saw Robbie at conventions and were always entertained and laughing whenever he crossed our paths. We particularly think of the time he tried desperately to sell the five-year-old Grace in the hallway at Balticon – his hilarious routine that day is a memory we will treasure. Robbie, we love you– it was an honor to know someone like you. Lisa, Pat and Grace Sponaugle
Bob:
You have our deepest and most sincere condolences. Our hearts go out to the Greenberger family.
We shall keep you and Robbie in our thoughts and prayers.
All of our love,
Phil Giunta and Evon Zundel
Dear Deb, Bob and Katie – Lauren happened upon a notice on Face Book today, while visiting her Dad in California, and called me immediately with the terrible news about Robbie. None of us were aware of the situation, having moved a few times since Dill Road. We’ve lost touch over the years, but will always remember Robbie’s gentle and mischievous personality. I still think of him as a boy, but of course, he’d grown up quite a bit since we were neighbors. Thank you for posting this blog, which I am now reading for the first time. I don’t know where you found the strength, but your efforts were hopefully therapeutic for you, and certainly helpful and meaningful to those who have been following Robbie’s story for some time. I’m sorry I didn’t know sooner. We wish you comfort in the coming days, and eventual peace. You are in our thoughts and prayers. Cindy, Leigh & Lauren Milender
Bob, I’m so sorry for your loss, although happy for Robbie’s love-paved transition. I’d been reading your posts for some time now, and was really hoping for different. The Mysteriousness is aptly named, hm? Prayers and best wishes, Daniel Bonner
I’ve been out of town and just heard the news today. I’m so sorry to hear about your loss. My prayers are with all of you now.
Bob:
My Deepest sympathies and prayers go out to you and your family. May all happy memories of Robbie keep you and the family strong.
Bob, Deb and Kate,
A quiet oppresive silence settled over the once joyous household, only gentle sobbing to be heard, a weeping by a heart too broken to understand why a soul so good and pure has been taken away from all who love him. Both shocked and decimated, I only received news of this after I returned from a short hospital stay of my own, almost worthless by comaparison.
When will the hurt end? When will this all make sense? We may never know. The pain will one day ebb, but not the memories. A person born of love and lived his life in the company of adoring parents, a devoted sister and supportive freinds and family can only turn a good boy into a strong and confident man, and as a man he faced his final challenge with grace and dignity.
Some will say this is a tragedy, and of course I agree. But we can also take it as an example. The bar has been raised. When we all face the end of our time in this universe, we can look back to the brave young man we knew and say “this is how it’s done. This is how a courageous battle is won.” And he did win it. Not by beating the disease, but by not letting it beat him.
As a parent, I can almost feel the pain and anguish you must feel. It should never be the duty of a parent to bury their children. Be consoled by the enormous capacity he had for joy and love who he showed to everyone who knew him, a trait he learned only through the love he was shown by you.
A young man so loved as Robbie will never truly die, as long as we continue to remember him. We will see him again, though we will all miss him.
I know it must be hard now, but if you feel the need, please call or write.
As ever, at your service,
Bob Ahrens
Dear Greenbergers:
I just learned of Robbie’s death from a Community Theatre email. I didn’t know Robbie –but I happened to be seated next to him at a Ludlowe Italian class lunch at Avellino’s several years ago. He was a remarkable young man.
My deepest sympathies to you.
Most sincerely,
Holly Wheeler
Dear Greenbergers:
I just learned of Robbie’s death from a Community Theatre email. I didn’t know Robbie –but I happened to be seated next to him at a Ludlowe Italian class lunch at Avellino’s several years ago. He was a remarkable young man.
My deepest sympathies to each of you.
Most sincerely,
Holly Wheeler
Dear Greenberger family:
On behalf of my wife and I, we would like to offer our condolences of your son Robbie. We did not get the opportunity to know the wonderful young man he grew up to become. We have met you, as well as the other authors at Shoreleave. Even though we did not get to meet Robbie, we can still get to know him through his family and others he touched. Its amazing how Star Trek has been a way to bring together people as a family with such positive ideals. My heritage/religion – Judaism – along with Star Trek has helped to teach me about making thw world a better place. Star Trek has had such a positive message which in Judaism is called – Tikkun Olam – healing the world. Losing Robbie is a terrible thing, but I think it’s important to learn from his example to continue the mission.
Our sincere condolences,
Jerry and Ellen Silber,
Albany,NY Fans Association Star Trek Meetup group
I am very sorry to hear of your loss. Robbie will be missed by all of us at shoreleave. My prayers are with you and your family. julie
We would like to take this time to express our deepest sympathies to you and your family. Going thru this same procedure a few years ago with loved ones ourselves, we know the difficulties that befall your heart at such a time. Peace is now with your son, too young, but at least he is in no more pain. Take care.
Sincerely,
Ray Ferry
Connie Bean
To the Greenberger Family:
We were so sorry to hear of your loss. You are all in our prayers. Take solace in knowing that he is no longer in pain. He will be missed by all of us at Shore Leave.
Darla and Steve Vasilas
Your have been a much valued presence at ICON for many years. My heart just breaks for you and your family and your beautiful son. I am so very sorry. I hope the outpouring of sympathy I’ve been reading helps you.
The entire staff of ICON extends its deepest sympathy on your terrible loss.
As a long-time Shore Leave attendee, I’ve watched all the “next gen” kids, including Robbie, grow up, and it’s been wonderful to see them integrating into the fan-and-con culture in their own ways, thus I’m saddened to hear one of those great kids is gone. I’m sorry for your loss, and my thoughts and condolences go out to you and your entire family.
to the Greenberger family, I am very sorry to hear about your loss. I know you have had a hard strugle.
Larry from Shore leave
Dear Mr. and Mrs. Greenberger and Kate,
My son Robert and I just heard the tragic news from our dear friend, Robert Longo. I lost track of my emails for a while, until today. The world has lost an incredible young man!!! We all met many, many years ago and I spoke about my aspirations to become a writer. Your family is so wonderful, gentle and kind! You all made me and my son feel welcome and right at home. My son and I both have grown-up in the convention. It’s like one big, loving family, reaching out it’s arms to embrace those who need comfort. Our hearts truly break to hear of Robbie’s passing. We know he is alive in heaven and is smiling down on his family and all who loved him! No parent should ever have to bury their child. My heart ‘as a mother’ swells up with tears reading Robbie’s story. My son Robert says, he will keep Robbie’s memory alive, especially when he plays in the Gaming Room. I will also keep this special young man close to my heart, always!!! Please know our thoughts and prayers are with you and your family for all time!!! May God continue to hold Robbie gently in the palm of His hand and forever hold him close!!! God’s peace! Love and Prayers, Robin and Robert, Jr. Lopez
Dear Mr. and Mrs. Greenberger and Kate,
My son Robert and I just heard the tragic news from our dear friend, Robert Longo. I lost track of my emails for a while, until today. The world has lost an incredible young man!!! We all met many, many years ago and I spoke about my aspirations to become a writer. Your family is so wonderful, gentle and kind! You all made me and my son feel welcome and right at home. My son and I both have grown-up in the convention. It’s like one big, loving family, reaching out it’s arms to embrace those who need comfort. Our hearts truly break to hear of Robbie’s passing. We know he is alive in heaven and is smiling down on his family and all who loved him! No parent should ever have to bury their child. My heart ‘as a mother’ swells up with tears reading Robbie’s story. My son Robert says, he will keep Robbie’s memory alive, especially when he plays in the Gaming Room. I will also keep this special young man close to my heart, always!!! Please know our thoughts and prayers are with you and your family for all time!!! May God continue to hold Robbie gently in the palm of His hand and forever hold him close!!! God’s peace! Love and Prayers, Robin and Robert, Jr. Lopez
Bob,
I wept as I read your blog, saddened not only at the loss of Robbie, but also at your having to put your writing talent to such a heartbreaking task.
May God be with you in this time of sorrow, and may you find strength in your family and friends as you continue – incredible as it may seem – to live, to laugh, and to thrive. Though I never got to meet Robbie, I’m sure he wouldn’t want you to do anything less.
Dear Mr. and Mrs. Greenberger and Katie,
This is Becca – Cayley and Danicah Waldo’s Aunt. This is an inexcusably tardy message, but I just found out the tragic news. I don’t even know if Cayley and Danicah know yet, but I’m going to call them if I can stop crying long enough to dial. I wasn’t as close with Robbie as my “sisters” were, but I knew him fairly well from being part of “the gang”. He was such a sweetheart and a good person – and very funny. I can’t find any words strong enough to express how so very sorry I am for your loss. As a mother now, I just can’t comprehend what you must be going through. And Katie, big hugz from me. I am so sorry and I’m really kicking myself for not going to SL this year cuz it’s been like eons since I’ve seen you! If there is anything I can do or if you just want to talk or whatever, feel free to email me and I’ll give you my number. My thoughts will surely be with you and I will keep you in my meditations. I mentioned Robbie in my meditations often once I learned he was sick. I am humbled by his courage and bravery throughout such a tough thing for a young man to endure.
love and hugz, Becca
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