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.
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.
As far as Greg's treatment is concerned, he's still continuing with his Avastin infusion every two weeks and his chemotherapy pill, Gleostine, every six weeks. He's had to miss a round of Avastin due to low platelets and last week they discovered his sodium level was really low and put him on an IV of sodium chloride to boost his levels and was sent home with doctor's orders to eat all the potato chips and french fries he can. But, other than that, things have been running pretty smoothly. He's down to 0.5mg of steroids a day. The next step is to test his cortisol levels to see if his body has adjusted and is making enough of its own cortisol before he can stop taking the steroids entirely.
He is definitely feeling the effects of his treatment more and more. Over the last three years, until recently, he threw up only one time from his chemotherapy and it was after one of his first rounds of it. However, in the past month or two he's gotten sick 3 or 4 times and feels nauseous frequently. His fatigue has increased substantially - he takes more and more naps during the day and sleeps 10-12 hours at night. His memory - short-term and working - has gotten worse, and it's hard to believe it could have gotten any worse than it already was!!! But, he is still here with us, so we'll take all of the bad and do what we can to make it better and be thankful for every day we have with him.
Thank you everyone for your continued support. We all so appreciate it. Happy holidays to all and may 2018 be a healthy year!
Anyways, based on his new MRI, almost all of the swelling in his brain is gone. It was pretty amazing to compare the two images. Swelling appears bright white in an MRI and in July's MRI the white was so pervasive on the right side of his brain, pushing the right side into the left side, causing that midline shift. Friday's MRI had none of that. The comparison made July's MRI look so much worse to me. I asked his doctor how he was even functioning at all back in July and she said "We're not sure, that's why we sent him to the ER!" The doctors in the ER must have been completely shocked to come into Greg's room after seeing his MRI and find him reading a book! She also said that if his image from July would have been an image from a person who had had a brain hemorrhage or something where the damage is immediate, he would have been dead. But since tumors and their associated edema is relatively slower growing, the brain has time to compensate.
Besides the swelling, his tumor also looked a lot better this MRI. Avastin can apparently mask tumor progression so his doctor told us to "keep that in mind". But she was then quick to point out that the "better-looking" tumor could still be a result of the radiation he had or the chemotherapy he is still taking every 6 weeks. She will probably never acknowledge this, but it could also be from the cannabis oil he has been taking in great quantities!
So we are staying the course with his new treatment - Avastin every 2 weeks, CCNU chemotherapy every 6 weeks and daily cannabis oil. The Avastin infusion takes only 20 minutes (compare that to some chemotherapies that take over 6 hours). He's in the infusion center for a bit longer than that because the pharmacy doesn't actually mix the medicine for him until they have his weight for that day. The first picture I posted is of the view from his chair during the infusion so the wait is not so bad! He has started to taper his steroid dose, which can be a slow process. He's currently taking 3mg every morning, down from 4mg, and we hope to get him down to 1mg in the next several weeks.
Greg has been doing pretty well. Though doing much better than he was in early July, his biggest struggle right now is fatigue and GI issues. He's still having a lot thrown at him, even tapering steroids can make you extremely tired. Our hope is that we continue to get good news from the doctors and Greg's energy level goes up as his body adjusts to all that it is being asked to deal with.
Thank you to everyone for your continual support and love! It continues to be a rollercoaster of a ride!!!!
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... 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
You've been on my mind, so I'm glad you updated us. Say hi to Greg for me and I'm wishing and hoping for the best for all of you. Keep fighting, Greg!
We always keep you in our thoughts and positive wishes. A day at a time is a treasure to hold onto.
Greg is always i n our thoughts and prayers as are you the entire family. Keep up the good fight!
Greg is in my prayers every night I know things will turn around and he will continue to heal.
Wonderful news for the Christmas season. Prayers to you and your entire family for a very Merry Christmas! Miles of smiles and love sent from sunny FL.
Thankful for you good news, dear Dana and Greg! As always, we are holding you all in our hearts. With love, Pam and Rowena
So happy to know Greg's surgery went well and he was in hospital only one night! Good thoughts for a great recovery.
Love and prayers to the entire family. Wishing Greg all the best with the laser surgery.
Sending love and prayers to you all for Monday, and always. Evalyn and Tom