We finished up today with a visit to the clinic. Jaymun had another
interthecal dose of chemo along with the ommaya tap. The last two
tap results show that treatment is working well and we're down to ZERO
blasts now twice in a row! Next Tuesday we take Jaymun in for another
MRI to double check that the chloromas in his brain are going away.
I can't say I'll ever get used to
watching him go through chemotherapy, although we're doing this for
the third time. He's three now and ever so much more "aware" of what's
going on and being done to him. He's suspicious of medical staff
sneaking behind him with syringes and tubes. All he has to do is hear
the crackling of plastic wrappers and he's immediately on guard. It
breaks my heart when we have to hold him down for procedures and hear
him say, "Help me, Mommy!" and know that he must be so confused.
A day in clinic is always tiresome. From start to finish, it's usually
hours before we're discharged and it makes for a very long day,
especially for poor Jaymun. Yesterday he fell asleep just as we pulled
into the hospital parking garage, which meant he had to tough it out
the entire afternoon without a nap. Most of the time is spent
distracting him before his procedure.
He enjoys eating whatever snack we bring along in his bag and his daddy somehow can't help himself
from stealing bites as well.
This evening Jaymun came home and was delighted to find a surprise
package in the mail of new trains (preordered wisely by mommy) to add
to his ever-growing collection. We know that the chemo makes him feel
worn out and nauseous. He will usually collapse on the couch when we
get home and just lay there, wanting us to softly rub his back or just
snuggle with him. His siblings always gather around him when he comes
home from clinic and dote on him, bringing him whatever his heart
desires, reading him his favorite books, cutting up yummy bite size
snacks for him to nibble on and placing his most familar treasures
around his pillow. Is it any wonder he's spoiled? I guess we all can't
help it, he means the world to us. There have been times when he
throws up over and over and cries, "I got sickies, I got sickies,"
it makes us all wonder anew how he finds the courage to trust that
he'll ever feel better again.
For despite it all, he's still our Jaymun. He handles everything so
bravely. All of it. We are always in such awe of how happy he is,
despite the crumminess of the situation. He's been through such ups
and downs and he still finds the happiness in every day. He inspires
all of us to find the joy--because inevitably, it's usually right
around the corner if you're willing to take a few more steps and look
He was completely exhausted after his big day without a nap and is now
resting peacefully in his bed with Crocodile tucked safely under his
chubby arm. There are so many thoughts swirling around in my head as I
watch Jaymun sleep, but for now, the main one tonight is that I feel
grateful to have all my loved ones safe under one roof together as
nighttime approaches. We have a little boy who has never known a life
without struggle and yet I feel this deep abiding appreciation that he
has been protected thus far from all the truly grim predictions for
his life. He only knows that he is surrounded by people that love him
fiercely and perhaps that is why he is able to sleep soundly,
blissfully unaware of all the scary unknowns for his future. He trusts
that those who love him most will take care of him best and this for
him is reason enough to wake up in the morning with an expectation
that the day ahead will bring laughter.
May it be so for all of us to wake up tomorrow with the same hope!
"Your love has given me great joy and encouragement..." Philemon 1:7
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