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Hello all

It’s been about two weeks since we came home from hospital. I am in hospice which basically means I have a hospital bed in our home and unfortunately have been pretty bed ridden since we got home. My left arm is still not functional because of the stroke which also means I’m immobile because I cannot use my crutches or my prosthesis. Days consist of waking up around 6:00 AM, allowing Jenn or my mother to fix my breakfast, doing crossword puzzles, and then slowly working through various titles on Netflix. I have good days where I feel really good, chipper, and have a lot of energy. Other days are not so good; sometimes it takes great effort just to have a conversation with somebody.

We understand the severity of what we are facing. I’m taking no other medications other than pain meds for comfort. In fact, I feel very little pain or discomfort as of yet. Every now and then, I have trouble breathing but the meds take care of that when necessary. The lung tumors continue to grow and eventually will completely overtake my breathing capacity. Unfortunately, we don’t know the timeline for this. So every day is cherished. Jenn and I spend a lot of time determining our future as well as that of our boys. Our conversations are difficult and emotional but unfortunately a necessary evil. We continue to remain as positive as possible despite the grim circumstances and continue to have a lot of laughter and positivity in the house. The incredible amount of blog responses from our last post were very moving, and uplifting. We have had a number of visitors as well that have been extremely helpful. My mother and father have stayed to help out since the initial hospital visit in June. The future right now is uncertain, but we are facing it with the love and strength of many family and friends.

Hunter

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Mile 26

Hi all-
Jenn here, wishing that I had some good news since Hunter’s last update, but regretfully I don’t.

We had spoken to his primary oncologist right after his last post and she gave us some rather startling news. She said that his disease had progressed much more rapidly than anticipated since his last scans, and if they were unable to get the lung infection under control, they were unable to get him started on chemo again. He also had active bleeding from some of the lung tumors, and since he was on blood thinners already, added further complications. While he’s not on chemo, the disease is progressing at a high rate, and she said she didn’t want to be pessimistic, but in this situation may only have about a month left. We of course were devastated by the news.

Late the night of the 2nd I had gotten a call from his nurse that he was having some sort of seizure or panic attack. I had been spending waking hours at the hospital, but had been going home to see the kids for a bit and be able to put them to sleep myself. I started spending the nights then at the hospital, too. He had a few milder “episodes” where he could feel it coming on and could breathe through it to help it pass, but other than that was his alert, happy and usual self otherwise. He said he’d start feeling like his extremities were going numb, things seemed surreal, his body would go limp and he almost couldn’t move for a few minutes. To me they looked like a seizure, but he was still aware of what was happening. They’d last a total of 10-20 minutes before he would feel normal again. Ben and i had a great visit with him the afternoon of the 4th and he was feeling pretty good. His mobility and spirits were great, and he seemed to be doing well, so I decided to stay home with the boys that night. He ended up having a series of 10 small strokes the night of the 4th, which left his left side paralyzed from the shoulder down. When I got there early the next morning I could immediately tell that something had happened to him. He had a series of scans and spoke to a number of doctors that were all perplexed as to how that could have happened. He’d had numerous scans two days prior, and no blood clots were detected. His speech seemed a touch slurred and his cognitive skills were a bit slow, but I’m pleased to report that as of today these seem to have returned back to normal, and he is able to move his left hand, slightly his arm, and slightly lift short round again. Fortunately since it wasn’t 1 large stroke, they said there shouldn’t be any permanent damage.

I’m sorry this post is kind of all over the place, but this all leads to where we are today. The doctors told us on Monday that they feel there isn’t anything else that they can do to stop his disease. The lung infection seems to have slowed, but is still present. The tumors are growing too rapidly and his body is too weak to start a chemo treatment. At this stage of advancement they don’t feel chemo could be of any help anyway.

We are preparing to bring him home tomorrow afternoon with the help of hospice. The doctors have said that he may have a few days or possibly a few weeks. We are going to make the most of the time that we have together, and after spending the past 3 weeks in the hospital away from our boys, it will do us all a lot of good to be back in the same space again.

I have to say, this whole situation seems rather unreal. To look at him, he doesn’t appear that sick, so it makes it so easy to pretend that we haven’t reached this point yet. I feel fortunate that thanks to such wonderful family and friends taking care of the boys, I have been able to give him my full attention these 3 weeks. Many late night chats were had, and although there’s been many tears, there have been many laughs shared too.

Thank you all for being so supportive and invested in his journey. He continues to feel it every step of the way. Will update when I can.

Jenn

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Eleven and counting

Hi all-

Just a quick update to let you know I’m still in the hospital. Day 11 (yes these go to eleven) and a new record which I’d rather not have.   My lungs have re-expanded, and the chest tube was removed a few days ago. I’ve been running a fever on and off for a few days now, and that seems to be what’s keeping me from going home. Although I feel a lot better than when I first got here, I’m still not feeling great. There doesn’t seem to be a clear reason why I keep getting a fever, but hoping for some answers soon.

On the plus side, I’ll be starting radiation treatment today on a couple of the spots in my lungs that seem to be causing me the most trouble at the moment. This will be the same type of treatment as the spot in my skull, but this time for 10 days.  Should see some good results in the short term from that.

Thanks again for all of your well wishes, thoughts and prayers. We really appreciate it. Hope my next update is from the comfort of our own home!

Hunter

 

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