This is the third post in this series, please read the first two posts before continuing. You can find Part One here: 10,372 - Part One, and Part Two here: 10,372 - Part Two.
We departed the doctor's office for the second time in as many weeks, however this time, I was deflated. There was still a chance that this was some sort of mistake, and that it didn't mean anything. We would need a genetic test for confirmation, but that could come back negative. Right?
Arriving home was unpleasant because I was going to have to tell my wife that the results had come back the way they had. It was difficult enough hearing them without needing to relay them again, however, it needed to be done. To say she was devastated would be an understatement. We has no idea, but we were about to embark on the entire grief process. The news we'd been given was not yet an offical diagnosis - we still needed confirmation through a genetic test, but we felt as if a weight had just been placed upon our shoulders and didn't know how we were supposed to function with it there.
I recall that morning, my wife disappearing for an extended period of time as she tried to process the information. It's kind of funny (not haha) looking back and knowing what we now know how we thought we'd be able to process everything we were discovering and be able to move on with it. In reality it's nothing like this - you're constantly dragging the knowledge around with you, no matter what you do, it's there. Sometimes it's right in your face, and others it's just simmering away in the background. So, we went about our processes, blissfully unaware that we'd been handed something with will haunt us forever, and that cannot really ever be processed and moved on from.
The next day, I had to try and figure out how to get the genetic test done while still functioning at work. I was going to hold out hope, even though high CK levels are usually as good as a genetic test. I soon found out that organising a genetic test wasn't all that straight forward. I couldn't just ring the local hospital and book him in, and reaching the genetics department was pretty much impossible. I considered reaching out to the local Muscular Dystrophy association, but found out that the one in SA had closed a few years prior as a result of going bankrupt after running a huge lottery to raise funds that nobody brought tickets for. So I couldn't get any advice from them. Frustration like I'd never experienced before was surging through me - I didn't have ny idea what to do, or who I could turn to for help. I felt completely lost and all alone. It' difficult to accurately convey the sense of despair I felt as I was desperately trying to understand what I needed to do to help my son.
Finally, I decided to call the Muscular Dystrophy Association of Australia, and the lady I spoke to there was so helpful. She understood completely how difficult it was for us and how frustrating it was that the local association had shut. She was able to provide me with a wealth of information regarding what to do and how to go about doing it. She even phones our local children's hospital to help me. I cannot ever repay her kindness, and will always be grateful for her assistance.
I was able to contact the genetics department and spoke to the registrar there who told me we had to return to the doctor's from whom we got the CK test results so that we could get a referral and then we'd go into the system and wait for a neurologist who could see him and start the genetic test. The process was long winded and was going to take a long time. I just needed to know so it was all the more frustrating that we were faced with such a long wait. I selected a different doctor to see at the clinic this time, and he felt to be more competent than the previous one we'd seen. He wrote and faxed the referral while we waited, and then we were left to wait for the neurology clinic to get back to us. I was expecting a long wait, but was pleasantly surprised to receive a phone call the following day.
One of the neurologists had had a cancellation so we were booked in to see him the following week. Which, is, evidently, a very quick turn around. I didn't know it then, but the neurologist had seen the doctor's fax and was staggered by the CK level and, while I've never been told this formally, I suspect he made room for us so that he could order the genetic test and start the only treatment available. When we first met, he mentioned to me that he thought the registrar I'd spoken to on the phone had said it was one thousand U/L, but when he saw the referral and it said over 10,000U/L, he knew we needed to see him immediately.
At that consultation, he did some cursory examinations - more observations than anything, and asked if Dominic struggled at school. When I said yes, he sat us down and spoke bluntly - I remember his words, 'I know what we're dealing with here.' I said DMD, and he nodded. I asked him how likely it was that it was DMD and not Beckers, and he said highly likely with the CK levels and the struggles at school. He ordered the genetic test but told me he didn't need it for confirmation and that it was just a formality he needed to go through to be able to write the offical diagnosis.
We took the order for the genetic test and went directly to the pathologist in the hospital because they'd been so good with the test for the CK levels. This time, however, the nurse couldn't get a vein easily, and what only took a couple of blissful seconds last time, turned into a five minute struggle with a nurse on each arm and my son howling in pain and disgust and outrage. They finally got the blood needed and we went hoime ot settle in for another wait. This one was significantly longer. I'm not sure why it takes longer, but can only assume that maybe a genetic test is more complex than the other ones. About two weeks later, we finally got the call from the neurologist, well, my wife did. At work. How well do you think that went down? Let's just say that all communication from the hospital was redirected through me from that point forward.
And that was our month around the diagnosis. It wasn't overly long, but when we were living it, it felt like an eternity. Some of the feelings of isolation and fear and helplessness we experienced, I would never wish on anyone, especially a parent. It was a difficult time, and I think we're still adjusting to it. The problem is, because its a degenerative condition, I think we'll always be adjusting to it.
References
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