momof3

Hi Victoria,
Thanks so much for your note. I just logged into the site for the first time in a while and it was so nice to find your message.

It’s hard to believe how quickly time is slipping by. I was so blessed with amazing support from friends, family and colleagues in the first few weeks. The funeral, as hard as it was, really brought together all of the aspects of our lives. And thanks to the generosity of my colleagues, i had secured day camp arrangements for the kids for the summer (before this my husband was home full time with the kids).

Last week the kids had the opportunity to go to Camp Kesem, which I can’t say enough wonderful things about. My 11 year old already has plans to become a counselor for them when he turns 18! I would highly encourage those on this board to find out more about it for their kids.

I’m now trying to begin the juggle of full time work, maintaining the household, getting ready for the twins to start middle school, and everything else life entails. Of course sleep is rare and not restful, but I’m doing the best I can.

I can’t say enough about how much the support I have had from everyone on this board has been. This is truly a unique cancer and I feel like only those who have been done our road can truly understand.

I hope you are doing well.

Best,
Gail

Thanks everyone for your thoughts and insights. My husband took another downward turn yesterday and so my mother picked them up early from school and brought them to me. In as gentle a way as I could, I broke the news that not only was their father not going to make it, but that he was no longer responding very much. I watched their hearts shatter, and my 11 year old son let out a visceral cry that ripped me to my core. They got themselves back together though, and each had their time with him to say farewell.
His immediate family was here all day yesterday and my closest friends have been rallying around me as I now hold his bedside vigil. Of course nothing comes easy…pain and anxiety meds seem to be doing their job but he now has a fever and we’re just doing our best to keep him as comfortable as possible. I just keep praying that somehow his journey will get easier..
Gail

Hi everyone,
Thanks as always for your feedback. He did decide with his hospice nurse to move to in patient hospice today. We are also treating his system as if we got a reading of high ammonia (they don’t typically do bloodwork like that at the in patient facility) and are monitoring the swelling carefully.
I’m still holding off on telling the kids until after graduation on Wednesday but did tell them that we would postpone their graduation party since it’s just too much to plan right now. They were very sweet about it and didn’t give me a hard time.
The doctor said if it is in fact the ammonia level then we should hopefully see some improvements in the next 24/48 hours and can decide if we want to think about him coming home at some stage or if he will stay there.
Best
Gail

Thanks everyone. We’ve decreased his Zoloft dosage to see if that could be causing some of the confusion. In the meantime we re-enrolled in hospice services so that I can now have the additional support from the social worker, home health aides, etc.

The kids have another week of school and also have a lot of end of year activities, especially because the twins are “graduating” from 5th grade and will be in middle school next year. I’ve got to get going on planning the party I’m throwing for them in a few weeks…I needed something to celebrate and to bring as much family together as possible.

We are going to see his oncologist again on the 23rd, but I’m struggling with the shift from frequent, recurring treatment, bloodwork, etc to a much less regimented form of pain management. I’m not planning on telling the kids we are in hospice just yet — trying to hold on until after graduation at least. I don’t want them to be surprised if there continue to be declines…I know they are already aware as things have gotten quite difficult over the last few weeks.

Thanks again for “listening”

Gail

Thanks to everyone for your suggestions. The doctors have come back and suggested he might be a candidate for liver embolization. We will have a consult at Penn on the 31st and hopefully move forward quickly, but if my husband stays in his current state of mind he will likely refuse the procedure. I’m really hoping they can give us hope of increased time and less pain. Fingers crossed…

After a very disappointing time last week (platelets were only 55,000 so no treatment could be given) my husband for the first time verbalized that he might not want to o continue treatment. He feels at this point like he is only surviving to be a patient and his quality of life is rapidly declining.
We are going,to have another PET scan tomorrow (without contrast since that makes him ill) and then meet with the oncologist to determine next steps. With all of the complications he has only had 2 treatments since April began and we are hoping to find that the cancer has been held at bay (in which case we will continue with a modified treatment regiment to allow more recovery time) or the decisions will be up to him.
I’ve also reached out to the medical marijuana doctors in our state to get him registered so we can start using the oil. We had decided that once we knew there were no trials available for him we would pursue that path.
I did make arrangements for a psychologist to meet with him on Wednesday to help him work through his thoughts and come to a decision. I know people say that some feel better for a while after they stop treatment, and I am praying that we can get enough good time to get to the end of the school year and our twins’ graduation from elementary school.
I know some of this is a repeat from a prior post but I am just so sad and afraid right now of what the next few weeks and months may have in store for us. I know I need to think in 24 increments but sometimes it’s just too much to bear.
Thanks for your support and for taking the time to read my ramblings.
Gail

Thanks everyone,

I’m hopeful that we can get some temporary measure of relief…and hopefully we will see some of his strength return. its not surprising to me that he’s got almost no energy today given the chemo earlier this week, but it’s tough to see him slowing down even more. I was really hoping to get to the mother’s day breakfast this morning at school with the kids, but he was feeling dizzy so those plans went back to the drawing board.

I think overall it’s the concept that we will just keep doing this treatment regimen until it either stops working or his body can no longer tolerate has us both in a funk. I reached out to the 4th angel foundation today and they are doing some research to try to connect me with a family in similar circumstances.

The support I get from the people on this site is helpful beyond words. I wish you all a peaceful weekend!

Gail

Hi everyone,

Luckily they were able to insert a filter last week, and we were able to start blood thinners once the platelets started to come up. He’s home from the hospital (with a hospital bed since he was too weak to get up the stairs to the bedroom), and today was able to get an 80% dose of chemo since his platelets had gotten all the way up to 128,000.

Last night I had a call from the oncologist we were supposed to meet with last week about clinical trials. Unfortunately we missed the appointment since he was in the hospital, but she called me at 6pm on a Sunday evening to let me know she had reviewed the Foundation One report and his file. Bottom line is that the cancer is way too advanced for them to be able to offer anything meaningful aside from the chemo. Even though the 2 mets in his brain were resolved, the spots on his spine, femur, and pelvic bone all showed increased activity and while I haven’t seen the CAT scan results from this latest hospitalization I suspect the spot on the lung has grown as well (they mentioned a “lung diagnosis” in the discharge paperwork).

It’s so difficult to watch someone who wants to fight so badly get beat down by the awful disease. He deserves to be an old man, my kids deserve a father, and there just doesn’t seem to be any hope except to try and get small bits of additional time.

Sorry for venting like this, but I know you all understand. Hopefully tomorrow will feel like a better day.

Gail