Update
11-17-06
I'm sorry if many of you have been checking back here for
updates and are wondering what's been going on in Jaymun's
life. If you recall, my very first entry stated that sometimes I would need to
process some emotions first before I'd lay them out there for the general
public to read. That's been the case for me the past few days.
Jaymun turned four months old on
Sunday. All of his month "birthdays" have been in the hospital. This
is a heavy, heavy reality for me to absorb at times. No parent should ever
have to go through the things we've experienced in the past four months. Our world has been turned upside down and shaken through and
through with Jaymun's birth. We're
getting ready to go through Jaymun's toughest part
yet, the bone marrow transplant.
Many people think a transplant is a quick fix to solve a
terrible problem. And we're praying hard that the "fix" does indeed
happen for Jaymun. But there is nothing
"quick" about a transplant! Just the workup alone for the transplant takes
weeks and weeks. He has had to go through tons of exams and CT scans and chest
X-rays and lab procedures and MRI tests, etc. We have meetings with specialists
and doctors and oncologists and everyone under the sun to prepare for this transplant.
"It
must be remembered that this treatment for your underlying disease may result
in your death."
We have to give our permission to proceed with this
treatment and sign what may very well be our son's death warrant. We, the two
people who love this child more than anyone else in this
entire world, have to put our signatures to a document that shows we have
approved a procedure that may kill him. It rips my heart out to have to put a
pen to paper and sign on that line. But I will. I will because the alternative
is unbearable as well. This transplant is our only hope to give him a new
start.
I'm terrified to lose him. The thought haunts me morning and
night that there could be a world someday without our Jaymun
in it. We've known since day one that the odds are against him surviving. The
statistics aren't great for infants with AML. I've never actually shared
the actual "numbers" for Jaymun's
diagnosis because it scares me to even say them out loud. Our consent form
is a general one for all bone marrow transplants. There's a statement that
reads, "Published data suggests that there is about a 70%
probability of survival using this treatment method." I
know that many of you read this and think, "Well, 70% is a pretty
good shot at coming through okay. Those odds aren't too bad."
Until I tell you that they changed the number 7 to a 3 on our copy.
30% isn't a great reassurance in my book. And yes, these are
all just numbers. They don't actually count unless they apply to us personally.
But tell me that any one of you wouldn't be scared stiff to be in our
shoes right now. I can't think of a worse place to be as a parent at this very
moment. I always had two fears that I thought I could never live through if
they actually happened. One was that someone would hurt or kidnap one of my
children. And the other was if one of my children got cancer or some other
terminal illness.
I'm actually living out my own worst nightmare. And the world
hasn't stopped. I thought it would for some reason. I honestly thought it would
devastate me to the point where I couldn't function. I wondered how in the
world I would cope. I thought the terror of such a thing happening to a
child of mine would paralyze me, literally. It hasn't. I'm crushed
and I'm devastated that Jaymun has to go through
this, but I haven't given up hope that maybe he'll still get a miracle.
I understand now that it's going to have to come in the form
of a transplant. I'm bracing myself for watching his poor little body be
stripped down to the most basic form of survival when that conditioning chemo
wipes out his entire immune system. We've been warned that things could get
pretty ugly for awhile. As bad as the past four months have been to stand by
and feel utterly helpless through all of his treatments, the worst is still
ahead of us. And that ball of fear is just sitting in my stomach, gnawing at
me.
I've said it before, but it bears repeating. Jaymun's life is not in our hands. It never was. He's
either going to recover here on earth or he will join the other children
with cancer who didn't make it in heaven. It's an agonizing realization that we
may very well join the countless other famlilies who
had to watch their children suffer over a period of months and months and then
die.
We were supposed to be able to come home for Thanksgiving.
That plan has now changed, as most plans do around here. The doctors feel that
it's best to keep moving aggressively while Jaymun is
still strong and not wait for the cancer cells to multiply. That's how fast
this cancer spreads--we can't even wait a week to enjoy a holiday with our
family together.
I feel raw right now. I guess I was really looking forward
to enjoying a holiday spent with our family at home. I had sort of resigned
myself to spending Christmas in the hospital, but now I have to readjust my
thinking to include Thanksgiving as well.
Please check back soon. I need to put some information on
the website for those that are interested in mailing
