For those of you who don't know, Dana just graduated from dental school and Greg has spent the past few years being an amazing Dad to his two young daughters and Daddy Greg to many others.
The support everyone has offered is amazing and inspiring. I chose $36,000 as the goal because the number 18 means life in Hebrew and 36 means double life. Right now Greg is most interested in living life to the fullest. Your support enables Greg to do just that.
Thank you so much.
Anyone and everyone who feels the urge to have one last drink with Greg is welcome. Kids are welcome. They are the best dancers! Dress is casual. There will be appetizers and drinks. Dinner will not be served, so I advise people to eat a good meal beforehand. Stop by for a little bit, stay the whole time. Whatever feels right for you.
There will also be a memorial mass for Greg on April 7th at 11:00am at the Church of the Resurrection in Fairport, NY. The address is 63 Mason Drive. Fairport is where he grew up and where his parents still live. Anyone who wants to honor Greg in this way and can make the trip is welcome.
On this snowy day I will leave you with something that Greg wrote at some point after he got sick. I think it is beautiful and fitting for this moment.
Besides Greg’s ability to live with and courageously battle one of the most horrible cancers, I have not witnessed such strength and bravery as I did when Etta and Faye said goodbye to their dad last night. It was a beautiful moment and one that I hope will help them heal in the months and years to come.
Greg had been talking for more than 3 years about writing an update on this site to thank everyone. His ambitions were so great that he even wanted to make everyone one of his art creations. When he was in the hospital this past January, after we chose hospice, I had my phone on, recording him talking and he started talking about the gofundme site. He didn’t know I was recording him. This was a heartfelt thank you. I thank you too. More than you will ever know.
We are going to have a celebration of Greg’s life this Saturday in the Cambridge area and a memorial mass in Rochester, NY where he grew up. We are still working on the details and I will let you know for anyone who is interested in attending. For planning purposes, I believe the celebration will be at the Hyatt Regency Hotel in Cambridge possibly around 6pm, but I will update as soon as we have the details worked out.
His decline started about two weeks ago. It was gradual at first and then it wasn’t. Then a flip was switched on Friday. Another storm is coming in two days and I am prepared that it will take Greg with it. Please pray for a peaceful transition.
There is so much more I want to write and I will but for now I just wanted to let you know that Greg has one foot in this world and one foot in the next. He will miss you and he loves you all.
Last Thursday, while Boston was getting pounded with snow from the bomb cyclone that passed though here, Greg just had to have his own bomb cyclone competing in his brain. He has been sleeping more and more over the last several weeks and there has been a slow and steady cognitive decline, but Thursday was different. He woke up that morning with a headache, which was unusual. He was also nauseous and ended up throwing up at one point. He slept a lot that day, but when he was awake he was confused and disoriented. His balance was also off and whenever he did get up I had to walk behind him to make sure he didn’t fall. Even still, he did end up falling once. On Friday morning, I called his doctor and the nurse told us to bring him to the ER. He had just been to the doctors that Tuesday to get his Avastin. However, he was unable to get it that day because his blood pressure was high. That can be a side effect of the Avastin, but it was new side effect for him. On the phone, his nurse was really concerned about the amount of protein that had been in his urine on Tuesday. Protein spilling into your urine is also a common side effect of Avastin but his number was so high she thought it could have been a typo.
So, we went to the ER. Luckily our car was all shoveled out and ready to go. He had a fever when we got there. They thought it may be an infection causing his disorientation. However, all his labs were coming back relatively normal and no UTI. They did a CT scan of his brain- no major swelling or bleeding but there were enough subtle changes to order an MRI. At this point he had already been admitted to the hospital. And it was a weekend. So it took maybe two days to get an MRI and maybe another day for someone to actually talk to us about it. In the meantime, the doctors were trying to control his blood pressure and kidney doctors were trying to figure out just how much protein really was in his urine.
Eventually we learned that the MRI showed moderate growth in his tumor. The did a 24 hour urine test and we also learned that the random urine tests were accurate. For any doctors out there, his 24 hour urine test showed a total protein of 1438. Normal range is 0.0-13.5. His neuro-oncologist said she has never seen urine protein levels that high. Apparently it is a very rare complication with using Avastin called nephrotic syndrome. She has never seen it with any of her patients. So Greg continues to be special. What it means is that he has to stop Avastin. Not that it was doing that great a job keeping the tumor from growing. But, she said that if he had been able to, she would have kept him on Avastin to SLOW things down.
When he started the Avastin in July, I said that it is typically the ‘last resort’ drug. So I was already acutely aware of what all of this meant. I asked her about time line. She was hesitant to give us one, or I guess really wanted to make sure we wanted one, and of course she can’t say for sure, but she estimated he has about three months to live without treatment. She did offer two choices for more treatment- a different kind of chemotherapy or the Novocure Optune device. We decided to try the Optune device. You can google it if you’re interested. It is expensive and we were told insurance will try to not cover it, so it may take awhile for it to be approved and for him to get it.
In the meantime, he is still in the hospital. They increased his steroid dose in the ER and that has improved his balance and his headaches. They are having a hard time controlling his blood pressure. It has remained relatively high in the 160s/90s range and has crept into dangerous levels of 200s/100s a few times. They changed his blood pressure meds again today so we shall see. He’s been happy and in good spirits since the second day we’ve been here. Today has been a week! However, yesterday he had another bad headache and threw up. The drugs they were giving him weren’t helping the headache. More steroids would have helped, but steroids increase your blood pressure so they wouldn’t increase his dose. I’m hoping they will figure out his blood pressure meds before we leave here.
Speaking of which, we are probably leaving the hospital tomorrow. We have decided to transition him to hospice care, which will be in our home for as long as we feel we can handle it and feel it is the best decision for our kids. They are delivering a hospital bed tomorrow morning that he can use if he wants. He is still so strong and when he doesn’t have a headache is in great spirits and still very sharp and funny.
Etta and Faye, as many of you know, are the best. They are amazing and have been amazing throughout this whole journey. But they, like me, seem to just be realizing and dealing with the reality of the situation. They have recently started getting extra support at school and are talking to someone. This isn’t going to be easy for anyone but I am most worried about them. Among other things, I am worried about what his dying and death is going to look like and them witnessing it. Greg and I have agreed to be open to reassessing him being at home. The hospice company we are working with has a facility in Cambridge we can transition him to if we ever feel the need.
This is a lot to process. I know many of you want to see Greg. I will say if you feel the urge to come, you should come but don’t feel like you need to. Greg has been sick for over three years and so has had plenty of time to see the people he loves. Know that you have been there for him and that is enough. But, like I said, if you are adamant about coming, he would love to see you. He needs his rest though and so he told me to tell anyone that visits that they need to get him to rest. That he may not do it on his own and needs your help. A long, drawn out visit with a social worker yesterday seemed to have sparked him getting a headache and we want to avoid that happening again. As far as timing, I also can’t predict what is going to happen or how fast it is going to happen. I wish I could, but I can’t. Sorry.
For local people, Greg needs 24/7 supervision. His parents are going to be staying with us and of course I’m going to be there. However, I’m going to try and go to work when I can, b/c unfortunately I am in a job that if I don’t work, I don’t get paid! When we are settled into our new situation at home, I will work out a schedule for anyone that wants to help be at our house with Greg. His parents and I are definitely going to need some breaks.
I think that is about it for now. Like I said, Greg has been sick for a long time. He was given a terminal diagnosis, we have had time to process this but somehow it still feels new. It’s a lot of changes and feelings all at once. I want to thank all you for all your support and love recently and throughout this whole journey. You have made things easier more than you will ever know.
Dana, thanks for the updates. I had some nice exchanges back in the fall with Greg using the Marco Polo app. He seemed in great spirits every time I saw his video messages. He was smiling and had his sense of humor. So happy to see that. My best to all of you this Holiday Season
Hi Dana, I just wanted to send a message to tell you how sorry I am to hear about Greg's passing... I am thinking of you and the girls, and am so happy to hear that you were able to spend Greg's final days surrounded by all your friends and family. Sending lots of love...
I was so sorry to hear this from a mutual friend and then to read this. I am so grateful that Greg and I were able to message each other back and forth on Marco Polo. He was smiling and joking every time! What a guy and what a warrior through this battle. The world needs more people like Greg, not less. He will be greatly missed. Prays to all of you Dana.
Dear Dana, I just learned of Greg's passing. I sincerely thank you for keeping all of us informed through out your journey. You have been amazing, I'm so happy that Greg was surrounded by his friends and family. Please tell Kathy and Bob that they have always been in my thoughts and continue to be so. May your love for G
Dear Dana, I don't know what to say... I wish I had some magical words... you all are in our prayers.... Pam
What a battle; what a brave fight. Thinking of you Dana and the girls and Greg's entire family . Sending love, sympathy and strength for healing .
Dana, your dedication and heart comes thru in every update. You are amazing. Best wishes to you, to Greg, and to your daughters as you prepare (as much as possible) for the coming days.
Dear Dana, What a strong woman you are. i admire your ability to write these updates while caring for your family. I'll be thinking of you and sending prayers your way. Rosanne Zeppieri
You're all in my thoughts right now.
Thinking of you all with love, and praying for a peaceful transition. Evalyn and Tom
Hi Dana... Thank you for sharing... I can not imagine how hard it was to write it... please know that your family is in my constant prayers.... sending an abundance of love, Pam
Sending my love and prayers to Greg and you, the girls and the family. I cherish all the memories of you all, especially your wedding with all the fun happiness we had with your family, too. May God bless you and give you peace. Love, Nancy
We are holding you all in our hearts! Sending much love, Pam and Rowena
thanks for keeping us all posted. hard to hear about the fatigue and continued memory loss. sending much love and continued strength. and what wonderful photos. xoxo
Dana , Greg & GIRLS! Hello and thanks for updates. We keep you close in our thoughts & prayers. ♡
Thinking of you all.
Thinking of you and your beautiful girls.
Sending love and good wishes to all of you.
Any new updates? I h op e Greg is doing well❤
We send bushels of love to you and your family, dear Dana! Pam and Rowena