Tough Road
05-22-2008
Tomorrow will mark two weeks since Jaymun was admitted to the hospital for his relapse.
The days have been a constant blur of worry, scheduling, traveling, caretaking and medical consultations.
I think I've known for quite some time that something wasn't right with Jaymun and the doctors only confirmed my fears.
I've tried to emotionally prepare myself for the moment when we would be told that his leukemia had returned.
It's something I've dealt with internally for over a year, this trying to 'live life to the fullest'
while at the same time hearing the ominous ticking of a giant clock counting down our time spent at home with him in remission.
I am not going to pretend that this news isn't devastating.
It is. It is a horrible, awful kick in the stomach to realize that we have to watch our
precious boy go through cancer treatment again.
I am still digesting the fact that his odds of surviving have become that much smaller (20%).
If I even venture close to thinking about where the next weeks and months will end,
I cannot breathe. Thinking about life without Jaymun in it makes me want to throw up.
I have only one coping mechanism to deal with this current reality and that is to not think.
Period.
Our goal in his treatment is to get him into remission after this round of chemo.
Even this is a long shot. If we achieve this, he's facing full body radiation and another bone marrow treatment.
I don't have to tell anyone who's been following his story that the first transplant
nearly killed him.
I am uncertain how many miracles God is planning on doling out to us or if we've used our quota up.
These are the thoughts that swirl around inside my head when I'm forced to face time alone with just myself for company.
It is a mercy that taking care of Jaymun is a full time occupation.
He isn't even two yet so he has no idea what a huge commotion this relapse has caused.
From the moment he wakes up in the morning until he collapses in bed at night, he's on the go.
Distracting him takes all of our energy, but it's a welcome chore. He has a
short attention span
and a long list of things he wants to accomplish in the day!
He knows his way around the HOT unit and his favorite stop is the kitchen.
We're glad to see that he's showing
interest again in food,
even though he's discovered Fruit Loops and Cookie Crisp cereal make mighty tasty snacks.
He loves to
hang out in the playroom and wander in and out of
the playhouse by the nurses' station.
When he's not feeling well from the chemo or he's tiring out and ready for a nap, he wants to lay down in his
wagon and have us walk him around the halls. If he's in the mood for some quiet activities,
Jaymun loves to
color and draw or read books. Elmo has also become a staple in our hospital room and
I'm becoming quite fond of the
fuzzy little red guy, actually!
He's showing his happy personality again and we're delighted to see his feisty toddler self shine through all of this.
I'm sure he's wondering what happened to his own bed at home and why he's in a strange place with strange people
poking strange things at him, but as long as he has mom or dad around, he's content.
I'm trying not to be too jealous of the fact that he seems to
prefer his daddy over me.
It makes me glad that Dave is able to relieve me at the hospital and be just as competent in taking care of Jaymun's needs.
We are in a wonderful place with amazing people who have become like family to us.
It is heartwrenching to be back here once again, but there is comfort in the familiarity of it all.
Many of Jaymun's nurses were our regulars the first time around and even though
I know they are just as disheartened as we are about Jaymun's relapse,
I can't help but love them all the more for their caring. People have often told me that they enjoyed
seeing photos of the medical staff who care for Jaymun, so I will try to post some pictures in the coming weeks.
In the meantime, remember
this nurse? She's leaving in a few weeks to have her own baby boy and
I can't even say how sad I am about not seeing her regularly.
We know that this small window of energy and perkiness for Jaymun is just a lull before the storm.
Dave and I are fully aware that we are going into battle again.
The side effects of his chemo are going to appear in just a short while and we will have our hands even
more full with infections and other nasty things. We have been through this before and that is quite
possibly the most frightening part of it all. Our options are so limited and we are so helpless and completely
unable to predict where the road may take us.
And like most travels, the road bends and twists and takes us around sharp curves and into unpredictable landscapes.
It soon becomes more than just travel and turns into a trek of unbelievable highs and unfathomable lows.
So here we go again, venturing into unknown territory and embarking on yet another route.
Thank you to every one of you that remembers our family in prayer daily. It never ceases to amaze me that
so many of you are fellow 'travelers' right along with us,
if only by virtue of your following Jaymun's treatment on his website.
Thank you for joining Jaymun's Journey.
