Early 1998, I was on maternity leave with Zachary, and was enjoying being
home with a busy baby, and helpful big sister Emily. I was considering
about going back to the Bank part-time, but was undecided, and felt
that maybe home is where I needed to be.
Spring of that year, I was experiencing some strange symptoms, an
unbalanced feeling, circulation issues in my feet, and my walking
was off...(it was pointed out to me from friends, that it looked as though
I had been drinking) I went to see my family doctor, and at first she informed
me that after having a baby, your body can take some time to get back to
normal. I was not convinced, my gut, my intuition, told me there is
something more here. I was referred to a Neurologist later that
year, after lengthy physical, neurological testing, which included
3 MRI's, a spinal tap, evoke potential, the Dr was stumped. I was
showing all the clinical symptoms of primary progressive MS, yet
no demyelination had shown on any MRI's, and my spinal tap came
back with nothing to support an official diagnoses of MS. At the time
I can recall the Neurologist saying, "I believe we are dealing with
something more exotic". Nevertheless, I joined an MS support
group, and as I sat there for the 5th meeting, I was more convinced
than ever, that what I had was not MS...my intuition was working
on overdrive...
Early 1999, I was folding laundry, trying to find something on
the TV, when I came across the local tv station talk show, who
happened to have a top notch MS specialist as their guest, and
he was taking calls. Just so happened that I got through to ask
my question, I was the last caller. My question for him was "Can
you have MS, but have brain MRI's that show no demyelination?"
He did not say Yes, nor did he say No, but he was curious.
I took it upon myself to get a referral to this MS specialist, who
worked out of Toronto Western Hospital. Paul and I met with
him, I gave him a list of all my symptoms, and after he did a
full neurologial examination, he was puzzled. How can I be
showing so many symptoms of MS, yet no evidence on any MRI's?
The dr said to leave it with him, as he wanted to do some
research, and get some input from some other specialists.
Summer of 1999, I received a phone call from the MS doctor,
and he wanted me to go and have blood taken to rule out
a rare genetic disease called, Adrenomyeloneuropathy....well let
me cut to the chase here...AMN was the "exotic" disease that I was
officially diagnosed with.
Although I wish the story ended there, it does not.
Zachary's Journey just began...
When I received the news of my diagnoses, as a Mother with AMN,
the genetically determined neurological disorder Adrenoleukodystrophy,
could be past on to Zachary. 50/50 chance, was what the doctor's told
us. Bloodwork was done and sent off to Baltimore for the specific
testing. We were told it could take a month to get the results. At that
point, the numbers "50/50", just kept swirling in my head and the
more I read about this horrific disease, I knew that early diagnoses of ALD is key.
July 2001, 2nd day in our very first home. I got a call from the doctor's
office, a very empathetic sounding woman, asked "Are you sitting down"
and "Do you have someone there with you?". I don't recall much more
of the conversation. What I do recall, is the feeling that this
has got to be a bad dream. It wasn't a dream, and our beautiful
son Zach, was diagnosed with ALD. We were now being referred
to The Hospital for Sick Kids, and an MRI was being scheduled.
Throughout the next 2 years, Zach had MRI's every 6 months.
Early 2003, Zachary never showed any neurological physical symptoms, it was
when Zach's MRI came back, showing a very small abnormality that
had doubled in size in a span of 3 months, we were than offered the intervention
of a Bone Marrow Transplant. As we knew that that ALD can progress rapidly,
we placed Zach on the unrelated bone marrow registry, praying for a match.
Throughout that year, I cherished everyday and every moment, and
stayed positive that a match would be found. Three weeks before
Christmas of 2003, the phone rang. An 8 out of 10 match had been
found! Yes, it was the best news we had gotten in long time, yet
we knew we had to prepare ourselves for the unknown.
January 10, 2004, was a very emotional draining day, as Paul, Zach
and I said goodbye to Emily, who thank god, was so strong and
understanding, and had her Aunty Steph and Uncle Troy to take
under their wings. My Mom and Dad drove us to Sick Kids that
day, to have Zach admitted to prepare his body for the BMT (Bone Marrow
Transplant). Instead of being solemn and sad on our drive down
there, I pulled out my trusty joke book, and tried my best to not allow
Zachary to feel the anxiousness and fear that we all felt.
It was strange, when we were admitted to 8B at Sick Kids, we were
walking in with a perfectly healthy child, but all around us, were
innocent young children, most with Cancer, some who had been
fighting it for most of their lives. On January 11th, Zach had a Central
Vein Line, placed in his chest, as this is for administrating the slew
of medications, required throughout a BMT. Throughout the next
2 weeks, Zachary had intense chemotherapy, and radiation. It was
heart wrenching, to see our beautiful boy, feeling so horrible, and I
would have given anything to switch places with him.
January 22, 2004 This is a day I will never forget. This was
transplant day. It just so happened to also be, The Chinese New
Year. Symbolic to me, after reading as the activities they perform
symbolizes new life and new beginnings. The nurse came in
and showed us the small bag of bone marrow, and for an hour
Paul and I watched as the new seeds of life were being placed
in our sons weak body. The sun was brilliant that day, and as I
sat next to Zachary, I envisioned him healthy, and ALD free.
The next 2 months Zachary had to have many different kinds
of medications, to allow his body to accept the new bone marrow.
Day by day, our little hero, became stronger, and Doctor's were
blown away by his recovery, and we were over the moon that
his body was not rejecting the new seeds of life.
During the next weeks, we were being taught how to clean
the CVL, administrating medications orally, what foods Zach
could and could not eat, and the measures to take to protect his
recovering immune system. Mom, Zach and I stayed at
the Ronald McDonald house, for 2 weeks, as Paul was at
home, getting our house as sterile as possible.
On March 10, 2004, home sweet home. Although I was apprehensive
at first, as I felt it was too soon, and you become accustomed
to hospital living, and the comfort of knowing that a nurse is
just a click of a button away. I knew Zach was ready, and needed
to be home. It was a surreal evening that first night, as
it had been 3 months since are little family were all under
one roof. It was good to be home.
For the next following 5 months, Zach was on still many
meds, which was draining at times, as I had to be in "nurse" mode
and sometimes my whole day was consumed, crushing, measuring,
finding creative ways to hide the meds in food. Zachary was a trooper
and understood that it was these "disgusting" medications that were
keeping him strong and infection free. We had clinic days every week
at Sick Kids, and each visit he got stronger and stronger.
By September of that year, Zachary, was only on one medication
and was going back to school. He was apprehensive, (so was I) , he felt
different, (Zach's hair did fall out during chemo and when it grew back
he kept wondering if the man who donated his seeds of life, had very
dark, thick and curly hair!). He was brave. I think I cried harder that "first" day
of school, than any other.
Many years have passed, and today, on a gorgeous Spring day in the year 2008, I am so blessed,
proud, grateful to say that Zachary's new seeds of life are 100% engrafted, and our son
has prevailed over ALD.
Zachary will be starting his second year of soccer, (and determined to
be just "defense") and working very hard to get to Grade 5. As Zach
gets older he is much more inquisitive about his journey, and would
like to figure out how to make that horrible dreaded medicine
Cyclosporine, not smell and taste like skunk! (hmm perhaps he'll
be a scientist.)
This past February we were invited to The Time is of an Essence Gala,
put on by the volunteers with The Myelin Project. I was asked if Zach
could be mentioned, and introduced, I said absolutely. Well, he was
and I was so touched by the standing ovation our little hero got. That
night on our way home, Zach, whispered, "Mom , I feel like I was famous
tonight". I said "you must be, because I feel rich".
