Last spring one of Adam’s professors, Dr. Adele Reason, got in touch with us about creating an award in Adam’s name that would honor his memory and accomplishments by annually recognizing a University of Georgia student who had overcome great obstacles to be successful.
Please consider going to the awards fund raising site, reading more about the award, and donating in Adam’s memory.
It’s been three weeks since Adam died and it’s all a blur. I cry randomly and miss him so much. This is the first time I’ve been able to write anything about his death. I’m planning to meet with Gina to talk about the last week Adam was alive and try to reconstruct what happened, and I’ll share that in a later post.
Adam was so brave, and so strong, and he kept so much of his suffering in his last days from us. He wanted to protect us and make it easier for us. He wanted to live so badly. And he fought so hard. He had so much to live for and so many who loved him. I don’t have the words for how grateful I am that Adam and Gina found each other. I’ve watched videos that Gina sent me of late night conversations they had while Adam was in Texas. She made him happy. He loved her so much.
Adam’s requested a celebration rather than a memorial service or funeral. He wanted something like his stepfather, Neil, had, a gathering of friends to drink and eat and share stories about his life and remind each other of the good times. We met at the State Botanical Garden in Athens, the same place he and Gina had planned to be wed. My favorite part of the day was when we showed the video of Gina and Adam’s wedding ceremony. So, although they shared vows in his hospital room, in a very real way, they were married with their friends where they had planned.
It’s been a rough year. I truly hate 2017. Too many close friends and family members have died- Shirley, Alice, Nell, Neil, and Adam. We haven’t been able to bring ourselves to do anything with Adam’s apartment in Athens. Gina spends as much time as she can there because it feels like Adam. She and Emily are plotting how they can keep the apartment- maybe AirBnB when they aren’t there. And it’s impossible to do during the holidays. The holidays. We’re coasting through those this year, downhill. Eventually we’ll make it to the bottom, eventually make it through Christmas and New Year. But not putting out much effort, just avoiding the headwinds.
I am thankful for the love and support of my family. We cry together and prop each other up. I’m not used to spending this much time with Kathleen. Particularly over the past 6 months we’ve been apart more than together. Today she complained to Cory that I have a lot of opinions. I told her I’ve always had opinions, I just haven’t been around recently for you to hear them. Emily is the best. While Adam was sick, I really stole time from her to focus on him, and although I know she understood, I also know it was very hard for her, particularly living away and not being with Adam as much as she wanted. Now we’re spending lots of time texting and talking on the phone. Almost 2 hours last night. She’ll be back in a few days and she and Ben and Gina will be in Milledgeville for Christmas Day. I haven’t spent time with Gina since Adam’s celebration, so it will be good to see her and to see Ben.
On that last Thursday, Gina and I stayed with Adam until the funeral home came to get him. Earlier, we had cleaned him before family came to see him. I had rubbed his back, and massaged the places along his spine and shoulder blade that I knew made him feel better. I deeply appreciate being able to help her that one last time. It was a special goodbye.
I can’t write any title for this post that can capture our loss. My beautiful boy died this morning. Adam was with his family and his death was peaceful. He has fought so hard these past 4 ½ years because he knew he had so much to live for. Finally it was just too much for his tired body to endure.
We’ll have a celebration of Adam’s life next Saturday, December 9 from 11-2 at the Georgia Botanical Gardens in Athens. A Facebook group has been created for you to share photos, videos, or stories about Adam.
Adam was breathing much better today and they were able to remove his mask and reduce O2 concentration to 40% and maintain his O2 levels at 98-100% through the day. Much easier to understand what he’s saying without the mask and much more comfortable for him.
Dr. Morris decided to postpone Adam’s lung CT scan until Friday to give the anti-fungal meds more time to work. Bad news today was that Adam’s port is infected and will be removing it tomorrow morning. We strongly feel the infection could have been avoided. His dressings would loosen when Adam sweated and we asked that they be replaced. But most times they were just pushed it back down sealing in the things he’d just been exposed to. I have explained the situation to supervisors in hope that it’s less likely to happen to someone else.
Adam’s friends continue to be so supportive and we love hearing their stories and seeing how much Adam is loved. I especially love Adam and Emily together and seeing how much they care for each other.
And Gina is a wonder. Her patience and caring, and the love she shares with Adam is remarkable. I can’t believe how lucky we are to have her.
Adam was admitted into the ICU early Sunday morning with breathing difficulties associated with his pneumonia. Cultures from a scope he had last week were positive for a fungal pneumonia, Fusarium, which is difficult to treat in immunocompromised patients. He is receiving anti-fungal drugs and help breathing. Things are most difficult for him when he starts coughing, which causes oxygen levels to go down and dramatically increases his heart rate.
We are hoping over the next several days that doctors are able to reduce the amount of breathing support he needs and that it is safe to transfer him to Emory so his neurological problems can be addressed. If his condition worsens, then he may need to go onto a ventilator, an option no one is looking forward to.
Gina is with him constantly and he gets a great deal of comfort from her being there. Emily, has decided to stay in town for the foreseeable future so she can be with her brother. He loves having her there too. Adam has also gotten lots of support from his circle of friends and family who visit daily. They tell stories and laugh and Gina gets to learn a lot about Adam.
Adam and Gina shared wonderful news today that they were married earlier this week in an exclusive ceremony in their fourth floor suite at Northside Hospital. We are delighted, and I don’t think I’ve ever used that word before. They are so happy and we are so lucky to have Gina in our family. A few photos not available Access Hollywood are below.
First, to be thankful for: Adam’s spirit and strength, family and friends and their support and love, Adam’s circle of friends who are there for him and remind us why he is so special and so loved, Mike and Mary for always being there for Adam and for me, Kathleen for taking care of me so I can help take care of Adam, Emily for being the best sister, and Gina for loving my son.
Adam’s condition has worsened. His neuropathy is spreading and deepening. Now he has no feeling in his lower body and he is losing muscle mass in his arms. They’ve taken him off one of his chemo meds (Idhifa) afraid that it might be contributing the his neurological problems. We’re trying to get him back on it because his leukemia is not getting better without it.
Of primary concern is the return of pneumonia. He had two very bad nights over the weekend and on Monday Dr. Solomon told us they did not think he would survive the pneumonia and for Adam to be ready to decide if he wanted to be put on a ventilator or just made comfortable. The message was it’s time to give up. Adam made phone calls to friends and he’s been flooded with visitors the past two days.
But, Adam’s pneumonia has been better the past two days and he is needing less oxygen. They are slowly taking him off the oxygen to see if he’s able to be safely transferred to Emory.
We’ve been trying to get Adam transferred to Emory so he could see a neurologist and where they can run test that Northside neurologist were not willing or able to conduct. Other than the initial IVIG treatment, which was several days late getting started and about four weeks ago, nothing has been done to address his neurological issues. One day they are calling it Guillain Barre and the next it’s not, it’s something else. And he keeps getting worse.