Tuesday, August 30, 2016

A Long Road - The Unexpected Journey

(Originally published May 17, 2013)
This winter has been particularly tough. Okay, I know I say that every spring, but that usually refers to the weather when I say it ... this time, it doesn't. Yes, sure, the weather was bad but there can be much worse things than weather.

It began in December I suppose. My daughter's house (right next door) had a flood due to the dishwasher malfunctioning and spraying boiling hot water everywhere. A few weeks before Christmas my husband got sick - with what we thought was swollen glands and/or a virus of some sort. That was the start of a very long journey (see previous posts). One that isn't over yet ... almost 4 months and thousands of dollars later (getting sick with a long-term debilitating illness is incredibly hard on your budget - travel costs, meal costs, some medical expenses, renovation costs - none of this is stuff you plan for. Good thing we did have some savings)

Medical Equipment
At OSMH they did a bunch of tests, diagnosed spinal stenosis and admitted him until they could send him for surgery. Test results were sent to Toronto, but doctors there said they didn't see any spinal stenosis. More tests ensued ... with little to no result. One doctor who was filling in for my husband's family doctor noted the "swollen glands" seemed to be more than swollen glands, and one of the x-rays showed some lumps in his chest. He wanted a biopsy. That took almost a week of waiting just for the biopsy; then another week for the results.

Floating Lights at RVH
Their diagnosis was "Large B-Cell" Lymphoma. They got us an appointment at the cancer center in Barrie. We had an initial visit and assessment, back to Orillia (OSMH) and then a few days later back to RVH in Barrie for a bone marrow extraction and biopsy, and a lumbar puncture. That was brutal and painful. He also got his first chemotherapy treatment. Some lymphoma is easily treatable, while others can be worse. Large B-Cell is worse, but still treatable. After that, back to OSMH for monitoring after chemo, with another appointment the following Monday for his next treatment. On Sunday, we were told his appointments in Barrie were cancelled - just like that; instead, on Monday morning we'd be going to Princess Margaret in Toronto for a consultation. No further information was given us, so we were confused and terrified. At Princess Margaret, we were told he didn't have Large B-Cell Lymphoma. He was diagnosed with Acute Lymphoblastic Leukemia (or ALL).

Lymphoblastic Leukemia
But Princess Margaret is entirely different atmosphere than any other hospital we've been in. They were very positive, but did say it was essential they begin his treatments right away. They didn't, however, have a bed at the moment. So, we were shipped back to OSM to await a bed at Princess Margaret, which could happen at any time - a day, a week or longer. That same Thursday he had been scheduled for another lumbar puncture in Barrie, so OSMH sent him by patient transfer to Barrie for the LP, but while he was having that, we got a call from Princess Margaret to come ASAP. He was shipped directly from RVH in Barrie to PM in Toronto without having an opportunity to go back to OSMH to get his "stuff". My daughters and I went to OSMH, packed up his room (by this time it was March 7th - he'd been hospitalized since the last week of January so ... there was a lot of stuff) and headed down to Princess Margaret to meet him. I spent the first night (and many subsequent nights) sleeping in his room at PM.

Buildings in Downtown Toronto near the waterfont
The first morning in Princess Margaret we met with the oncologist (Dr. Schimmer) and a hematologist (Dr. Muhhamad S). Dr. Schimmer explained a little about what Lymphoblastic Leukemia was, and what the treatment involves. He also gave us some astounding news that morning. With the treatment received at RVH, he was already in remission! (PTL - I believe in miracles, and this was just another confirmation of God's blessings) Dr. Schimmer didn't really understand how that was possible, but he said his bone marrow tests (done at Princess Margaret) showed his bone marrow was clear of anything, and was vastly different than when compared with his bone marrow biopsy from the pre-treatment period.

Rear Lobby at Princess Margaret
That began a long and difficult journey for us - for our entire family actually - one that isn't over yet. Although he's still in remission and the chemotherapy is ongoing (for 2 years to come), he still wasn't able to walk. While he was in Princess Margaret, he also lost the use of his hands, arms and upper body. As it turns out, this wasn't really (or doesn't appear to be) related to the ALL. He was rushed from Princess Margaret to Toronto Western for an emergency surgery on the discs in his neck (the cervical discs) - turns out these discs were prolapsed, pinching off the nerves that travelled through the cervical spinal column. A few days later, he was back at Princess Margaret, but still unable to really make use of his hands, although he could "move" his arms, he couldn't do much more than that. The surgery didn't really have much of a positive result on his legs though - he still couldn't walk. Four weeks later, he was back at Toronto Western for a similar surgery on his back (the thoracic discs). Another week in Toronto Western (excellent surgeons but the most disorganized hospital with the worst communications we've ever dealt with - if you can find a good surgeon elsewhere ...) and back for a chemo clinic day at Princess Margaret, then back to Toronto Western for an hour or two and they suddenly sent him back to OSMH in Orillia.
Fight ALL
He's been hospitalized since the last week of January - hasn't been able to come home and is still in a wheelchair. The good news is last week OMSH finally got him moved into the rehab center instead of the surgical floor. He began rehab the next day - hard work for someone whose legs have zero muscle left, and for a person who is also still undergoing chemotherapy treatments. He's tired, but he also seems energized by the thought that he may actually walk again. On Wednesay, he took his first steps in 3 months ... with a great deal of help and a walker, he moved 30 small steps in the gym. Those few, small steps were huge though - they gave us more hope that he will walk again, and will be able to get out of the wheelchair ... even if he does have to use a walker or a cane.

It's going to be a long haul - six months to a year for recovery (as much as he can recover). Nobody will know until then if he has permanent nerve damage or not. But we are seeing progress - he can hold a pen and write his name, he can feed and partly dress himself, he can wheel his own wheelchair - all of these were things he couldn't do for months. So far, we've been in four different hospitals in three cities.

I'm trying to keep the story short (already failed - I know, but there is so much more than what I've already written), but it's hard to cram 4 months worth of frustration, fear, prayer, and all that goes with it into a short post. Our family (in particular our daughter's and their spouses) have been steadfast support; driving me back and forth to Toronto (I don't drive) and helping me to do the things I couldn't do alone. The prayers of friends everywhere have kept us going, and we know God hears them. I've spent many nights sleeping in a hospital room on chairs; spent untold hours away from home, still trying to accomplish the things that need done at home, and provide support for my husband. At this point, I'm probably as tired as he is, but for different reasons. I want him home.

New Tiled Wheelchair Shower
During all this, we've had the house under construction. We hired a contractor to enlarge the main floor bath and build a wheelchair shower with tile ... a huge job (and a messy one, I might add), but the end result is beautiful, and it means when I can finally bring Ron home, he has a bathroom he can get into and use, even from a wheelchair. The contractor? Did a terrific job on the bathroom. Oh ... he's the guy across the road. He is a contractor, though he's also one of our awesome neighbours.
We've got some fabulous neighbours - they've all been concerned and supportive, and helpful - offering to do whatever needed done while Ron is hospitalized. At this moment, I can't even imagine what it would be like to live anywhere else in Orillia. So to the neighbours left and right, across the road, up and down ... thank you. Just for being there if I need you; for asking how he's doing; for offering to help. You're the best. When Ron get's home we're partying and you're all invited.

To everyone of our family, friends and neighbours ... thank you. May God bless your lives as richly as he has blessed ours.

... the really good part is, that he will be home eventually. So many people never make it home, never make it out of the treatment phase for ALL. We still have a life together to look forward to. For that, I thank God.

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