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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February Update

I’m beyond tired.

Mark is on antibiotics for the second time in less than a month. The doctor thinks he’s aspirated something – food or his own saliva. He seems okay although yesterday he had a low grade fever. We’re waiting for results of a late afternoon chest x-ray. This time he is being kept in bed as he is on IV fluids and today he wasn’t allowed to eat anything, not by mouth or tube. There is a risk of aspiration both ways. So he missed today’s physio session. Hopefully he’ll be up tomorrow or Friday. Last time they got him on antibiotics right away, and he improved immediately. Let’s hope the same will happen this time. This is one of the risks the doctor warned me about – aspiration pneumonia or any type of infection or the ominous ‘second stroke’. I think the second stroke he had in August counts as that scary second stroke that can happen within a year of the first stroke, don’t you?

He’s not happy about staying in bed. He is miserable and hates the place. Lately he’s been very sad and keeps asking to go home. It’s such a challenge trying to keep his spirits up.

He is slowly doing better physically. He can move all the fingers on his left hand, but not the thumb, and he can gently give me a squeeze. He’s starting to wiggle his toes too. He is working on his abs and back muscles in physio and is doing great with sitting up straight without support. He calls occupational therapy ‘gimp therapy’, but he’s doing well there too. He’s very impatient and has to be told to slow down all the time. He seems to remember faces better than events. Most of the time he thinks we’re in Tel Aviv, for some odd reason. But when you ask him what hospital he’s at he’ll usually say “Baycrest”. So I’ll mention that we’re in Toronto when we’re talking, instead of correcting him all the time. He can see the CN tower from his window!

I’m asking for no visitors right now. He really only wants to see our girls, and our dog, at this time. I think a few days of quiet will be good for him. Plus we have birthdays coming up in our immediate family both this weekend and next weekend and I would prefer it if we can celebrate those alone with Mark.

I’ll post again when he is well and back into his usual routine. Thanks for understanding.

 

Update from Mary

  I’m happy to report that Mark successfully passed the swallowing test today! He hasn’t had any food or drinks in his mouth for almost 3 months. Tonight he had a very thick potato soup for dinner. He wasn’t too thrilled with it, but when I reminded him that this meant that his feeding tube will be removed eventually, he ate the entire thing! He will be on a strict minced diet for now. Any liquids that he has will have to be thickened. Apparently this is a safety issue, so as not to cause any choking. Mark still has the stoma in his throat, but it only goes into his trachea, not his esophagus.

He certainly hasn’t lost his sense of humour. He likes to point a lot with his right index finger. Tonight he pointed at me, for no apparent reason, so I grabbed his finger and, of course, he made the farting sound. Then he did it 2 more times, with the biggest grin on his face. He really likes to make us laugh! It’s obvious that his playful personality hasn’t changed.

I read him some of the cards and letters that we have received in these past few months. When he realized how many people care about him and wish him well, he had the most bewildered smile on his face, as if he were saying “for me?”

THANK YOU ALL for keeping Mark in your thoughts and prayers!

Update from Mary

What a busy week it’s been! Once the isolation scare was over Mark was ready for visitors. He especially appreciated a visit from an old friend (from his camp days) who drove all the way from Cleveland, with his guitar. Mark LOVES music, particularly live music. I truly believe this is a great therapy for him. Mark really enjoyed the private concert in his room. His buddy Tom even sang to him, Mark watching intently. It was beautiful. A few days later, Jordy came by with the new Wilco album on his iPod and his headphones, as opposed to the ear buds Mark is used to. Mark gave Jordy the big thumbs-up several times, and moved his right leg in rhythm to the music. There was a little head-bopping in there too!

On the medical side, Mark is slowly putting some weight back on, which is great! He’s doing really well with the physio therapy exercises. His coordination of his right side has improved immensely. He follows the physiotherapist’s instructions most of the time. His left side is still mostly paralyzed, but there are times when we can notice the smallest muscle contraction in his thigh when he is instructed to lift his leg. He is certainly trying. Yesterday he managed to kick his left leg out of bed and onto the floor somehow. Remember, Mark is 6’4″ and even though he has an extra long bed, there are times when it’s just not long enough. When he felt his left foot resting on the floor, he instinctively lifted his leg and tried to put it back on the bed. I got so excited when I saw this, I said to him “Mark, lift your left leg!” but he didn’t. We know he CAN lift it. He just needs his brain to make the connection. I’m sure this will happen eventually.

I spoke to his doctor this afternoon who is encouraged with Mark’s progress. He believes that Mark is going to clear the pseudomonas from his lungs on his own, and that means that the trach will be removed one day. It is not a permanent thing, thankfully! He is coughing less and less, with fewer secretions. I have no idea how long this will take. We still need to be patient. The doctor says Mark looks brighter, which is true. He shook the doc’s hand and smiled at him for the first time! Mark continues to whisper to us daily. He wants to go home. Sometimes he asks to use the washroom, and I have to remind him that he can just ‘let it go’. Obviously his short term memory is still compromised. I really hope it doesn’t stay like this! This is one of the first things that went when he had his stroke, so maybe it’ll be the last to return. He is also showing signs that he can swallow. The doctor is sending the speech therapist in on Monday to see if Mark can pass the swallowing test. This will be huge if he does! Lately he’s been asking for food and water. He hasn’t had anything in his mouth for three months. I try not to eat in front of him anymore because he keeps asking for my food. Once we get rid of the feeding tube, then we can start to give Mark some healthy food for his brain, instead of that stuff in a can.

Finally, I’ve signed the papers for Mark to be transferred out of the hospital and into a complex continuing care facility. There are only 5 places in Toronto that can handle this type of patient. I spoke to our social worker today. There are beds available at our number one choice and they are considering Mark’s application this weekend! I won’t jinx it by saying which facility it is, but I have a good feeling about it! Please keep your fingers crossed for us. We might be leaving the hospital next week!

One last note – Mark can be a real rascal even in his condition. As Ariel and I were preparing to leave his room tonight I asked for his right hand so I could put the restraint on it. He begrudgingly gave it to me. I strapped him in, which I absolutely hate doing, and he made a pretty sad frown, started moving his hand the best he could, and then whispered “my hand.” So I unstrapped him to see if he had to scratch his nose or something. He didn’t do anything. He just wanted his hand free. I don’t blame him. I tried to explain to him why we have to restrain his hand. I asked him “Are you going to try to pull the tube out of your throat?” He nodded “yes”. I told him that that would be very dangerous and only the doctor can remove the tube, therefore we have to make sure that he doesn’t pull the tube out. He reluctantly gave me his hand again. I strapped him in, and then Mark gave me the middle finger. Ariel started laughing her head off. I said, “Mark, did you just flip me the bird?” He nodded yes, while trying to stifle a grin. Very funny, Mr. Silver. Very funny!

We got our goodnight kisses, and left with smiles on our faces.