January 2013 Update

Mark is still in the hospital at Baycrest, still in Complex Continuing Care, 17 months after suffering and surviving the massive strokes. The only tube in him now is a trach which takes a long time to be weaned off of. He had the feeding tube removed a few months ago which is a huge improvement. It doesn’t happen very often on his ward. He’s still eating a pureed diet, sometimes on his own, and we continue to bring him 2 delicious and highly nutritious green smoothies daily. His short term memory is very much impaired unfortunately but the odd time he does surprise us by remembering what happened earlier in the same day. He is still progressing at physio. The therapists had him up on his feet a few months ago, which was great! (see photo below) No steps yet but his affected leg is strong and working. Because his good shoulder is slightly out of joint again, he is not standing now as he needs the strength of his arms to support himself. We’re working on getting that shoulder muscle strong and hope that he’ll be up on his feet again in the new year.

His doctor is giving us little hope that he’ll ever come home again, unfortunately. He may have to live in long term care, but we’ll cross that bridge when we get to it. We believe in living in the moment. I’m still with him every day, with one or both of our daughters, sometimes alone. I am completely exhausted physically and mentally, but manage to laugh and smile every day, and get Mark to do the same! He’s in much better spirits these days, which is probably due to a new anti-depressant. It’s just such a relief to be able to say goodbye to him at night without him crying.

These past few months we’ve been dealing with another health matter. Mark has a very rare blood disease, a myeloproliferative disease. This is a disease of the bone marrow in which excess cells are produced. His condition is hard to define as he does not have one of the typical genetic mutations associated with CML (chronic myelogenous leukemia) or HES (Hyper Eosinophilic Syndrome) but a rare genetic mutation. This apparently was the cause for the blood clots and the strokes. There aren’t any warning signs for this condition. He’s had it for quite some time. His white blood cell count, specifically the eosinophils, has been consistently high this whole time, and unless you are getting your blood tested on a regular basis, you won’t know you have this. On top of this it was discovered that his spleen is slightly enlarged. Those two factors alone were enough to send him to see a hematologist at Sunnybrook Hospital. We’ve had a few trips there already since the end of August. In fact we waited the entire summer for the first appointment. He’s had several blood tests and the first of many bone marrow biopsies. The biopsy is the only way to see what’s going on inside the bone marrow. He is taking a cancer drug, not chemo but a targeted drug therapy called Gleevec. He had to go on Prednisone for the first two weeks to ward off any bad side effects, and he handled it well. He also had to have an echocardiogram before starting the treatment to make sure his heart is strong and healthy, which it is.  He’s been on the drug for about two months now and so far he’s having a positive response. He is now taking the full dose, after starting off slowly with it. He’ll have to have more blood tests and another bone marrow biopsy in the months ahead to determine if this drug is right for him. If it is he’ll most likely stay on it forever as the disease is chronic and can be progressive. There is no cure. It’s a huge concern, not just because of the history of cancer in his family, but simply because this is another thing for Mark to deal with.

He seems to tire easily, and he sweats easily too. He is maintaining his weight. The side effects of this drug are not nice, but fortunately they’re not as bad as chemo. You can read about it here if you wish: http://en.wikipedia.org/wiki/Imatinib   (Mark does not have the Philadelphia Chromosome, and he is negative PDGFRa (platelet derived growth factor receptor gene rearrangements). His mutation is on chromosomes 9 and 12.) He also had to endure getting his blood sugar tested 4 times a day while he was on the prednisone. He did NOT like that, but it was always within the normal range.

We’ve had a LOT to deal with as you can see, hence my long absence here in keeping you all up to date. I hope you all understand that I am up to my eyeballs in responsibilities and writing this blog is just one more thing to do. Nobody, except maybe other caregivers,  can truly understand exactly how exhausted I am. My peers at Baycrest are pushing their parents around, not their spouses. It’s been a long and difficult road this past year. I feel much older than I am, most of the time. But like I’ve said before, the only way to get through this is to just deal with the day at hand, not worry about tomorrow, and don’t ever think about the “what if’s” of yesterday. That’ll get me nowhere but stressed out and I can’t afford to do that. I’ve got Mark, our girls, our dog and most of all ME to look after. So far, we’re all doing a pretty good job if I do say so myself. Our family may be fractured at the moment, but we try our best to be a family and have fun and be silly, at the old folks hospital.

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He stands for the first time!

MarkStandingIn September, 2012, Mark finally got up on his feet with the help of two fantastic physio therapists. As you can see in the photo Mark needs the use of his strong right arm and the gripping ability of *both* of his hands to support himself. He is looking in a mirror here. It takes a huge amount of effort to do this even for a few minutes. He stands up, and then slowly sits back down again, about 3 or 4 times in a row with a break in between. He has to be reminded to keep his left (affected) leg from bending at the knee. He really liked standing up again, but I think more than that he was proud to show these ladies exactly how tall he really is.

Update (finally)

It’s been a while since I’ve written an update. Sorry. I can only blame it on tiredness and the need to distance myself from the hospital when I get home at the end of each day. I have to be careful preserving my energy, and my sanity.

Rest assured, Mark is doing fine. He is progressing at physio therapy, eating well and maintaining his weight, and generally staying well. We never did find out why he had that last infection. These things tend to happen. Even this past week he had an elevated white blood cell count, but no obvious signs of infection anywhere. The wbc count is going down now and there isn’t a need for antibiotics. He will still see a hematologist soon for more extensive blood work.

We had very sad news in early March when we lost Mark’s mother, Peggy. It was very unexpected and we needed to take time with that. Mark was devastated, especially at not being able to attend his own mother’s funeral. This is something that he has not forgotten. She was a very loving mom, and came to see Mark every week, always bringing her homemade food especially for him. She is sorely missed.

Mark is showing definite signs that his left leg, the affected side, is recovering. He is now kicking a soccer ball with his left foot, while in his wheelchair, with his right leg restrained. This is really strengthening his leg and he is successfully kicking that ball! His left hand is getting stronger too. He is finally starting to move his thumb and he can control his wrist as well. The arm usually recovers after the leg and he is getting some movement in the arm now too.

His spirits are improving. This seemed to coincide with the beginning of baseball season. Mark is really enjoying watching the Blue Jays play right now. He is also loving being outside when the weather is nice. He’s starting to get a suntan! His memory is still not perfect, but he does make long term memories eventually. This week he told me, for the first time, that he knows why he is in the hospital. He said “I’ve become discombobulated”. Why? “Because I had a stroke.” His awareness is slowly improving, but there are times when he still thinks we’re in Israel. The way he sees it is, if we are in Toronto, why isn’t he at home? He starting to realize exactly how long he has been away from home now. It’s been nine months and it’s been very hard to live without him at home for such a long time. We’ve still got a long way to go, but we’ll get there. He is determined, as we all are.

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