Happy (Re)Birthday Dear Jaymun
12-1-06
Whew! It has been a busy, busy week for our family. The
transplant had seemed like such a far-off event and now it's all over. I will
try as best I can to recap the events leading up to Jaymun's Big Day. Where to begin?
Wednesday night, I packed all our "stuff" and
drove with Kirsten, Devon and Sean to the
Ronald McDonald House to stay overnight. Devon
had been asking to stay there for quite some time and it seemed like the perfect opportunity.
Most of us have seen ads for the RMDH or have dropped
extra change into that plastic bin under the McDonalds's drive-thru window, but
very few people (fortunately) have ever had to use its services. It's a place
of lodging for families of patients who spend extended time at hospitals.
Many families have long drives back and forth for medical care and the RMDH
provides them with a place to sleep and eat for a small donation a night. It is
a beautiful place, tastefully decorated and well run, mostly by volunteers.
Families can come and go as they need to and are able to use the kitchen
facilities to make their meals, just as they would at home. They also have
spacious play areas
for the children, with plenty of room for everyone to
relax. This place is a godsend for many families who find themselves
in tight financial situations. They are able to stay together as a family in a
clean, safe environment with the comforting knowledge that the hospital is
just across the street. All I can say is, Keep giving
that change when you see those donation boxes. There are no words to explain
how grateful families are to have such a place to stay in difficult
circumstances.
We stopped at the hospital first to visit Dave and Jaymun before our sweet boy went to bed for the night. This
photo is the last pre-transplant photo of
Devon and Jaymun together
--our little "blood buddies", as I like to call them. The kids then had a couple of hours to
enjoy the RMDH before bedtime. The
Christmas tree
they have in the House reaches three floors high! I'm thankful Devon
had such a
carefree time
before his surgery the next day. Prayertime
that night was a tearful one...we prayed long and hard for all to go well and
for Devon's cells to take over Jaymun's body and provide him with a healthy, brand-new
immune system. There is something so sweet and earnest about children
praying--they can pare all the essentials down to a simple, heartfelt
conversation with God.
Finally the Big Day arrived. Devon
was so excited to wake up and realize that his time for action had finally
come. His surgery was scheduled for 8:30 AM. We got him changed into his
hospital gown
and they administered the pre-anesthesia medication. It causes
some drowsiness and has an amnesiac effect, so Devon's
memory is rather foggy about the events leading up to his procedure. He
met with one of
his anesthesiologists
and saw
Dr. Margolis
before they whisked him away. The other anesthesiologist was a Russian lady who had helped
sedate Jaymun a few times for radiation--I feel bad
that I didn't snap a quick photo of her with Devon,
but things were proceeding rapidly at this point. Dr. Margolis offered to
take our camera and videocamera into the surgery
room. We were surprised at this, but realized that Devon
would probably love to watch his own bone marrow harvest later on!
The
procedure
took about one and a half hours. Devon was extremely
groggy
when they wheeled him back out. They had this
certificate
taped to his bed for him to keep. He was pretty sick the entire day until about 6 PM. Those anesthesia drugs can be hard
on the stomach. True to his nature, Devon
didn't complain
even once the entire time he was throwing up--in fact,
he has never once cried or complained throughout any of this long ordeal.
We were so proud of him. He just wanted to do his part for Jaymun--and
boy, did he ever! We found out that Jaymun was
originally going to get about 3 million stem cells from Devon
(75 cc of marrow). The initial plan was to freeze extra in case of later
procedures for Jaymun. Due to the awesome stem cell /
T-cell ratio in Devon's bone marrow, they gave the entire amount of bone
marrow that they collected from Devon (200 cc) -- which ended up being 19
million stem cells!! Devon
was impressed that his bone marrow had been so "fruitful" for his
brother.
Devon napped a bit after
his surgery, but it wasn't long until I heard a hoarse little voice say, "Can
I open my packages now?" (Since Devon's
surgery required him to lay on his stomach the entire
time, he had to have a breathing tube in while he was sedated, and that can
sometimes cause a sore throat later on.) Devon
wasn't feeling well enough to actually open them himself, but he also didn't
want to wait any longer. Sean was more than willing to do the honors. Devon was AMAZED by the amount of
gifts and cards
from people! He kept laughing and saying, "How did everyone know what I
like?" Sean would tear open the gifts and Devon
would inspect each one, carefully reading the cards and exclaiming over all the
loot he collected. It was a wonderful, wonderful surprise for him to receive so
many things from people. Thank you to everyone who sent him presents
and cards--it really made his day! As you can see from his
bulletin board
, he was showered with love and praise from people. One of his doctors
told me she'd never seen so many cards and gifts for a donor before.
Jaymun's bone marrow transplant
took place at around 5:30 PM. There was an air of excitement on the Hot Unit as
all the nurses and doctors wished us well and congratulated us on Jaymun's "Re-Birthday", as they call it.
Jaymun's night nurse, Evelyn, was also Devon's
nurse and she asked him if he knew why they called it a Re-Birthday. Devon said he thought it was because Jaymun
was getting a new life (smart kid). The actual transplant took over four hours.
It works just like a blood transfusion, with all the bone marrow running
through the tubing
into Jaymun's central line in
his chest. Jaymun was smiling away in his bouncy
seat, wondering what all the fuss was about! All of our
kids were able to watch
it happen, although from now on, everyone has to wear masks in the room. Devon was still throwing up for awhile in the beginning
hours of the transplant, so he visited Jaymun's room
a bit later on. You should have heard his excitement to see his actual bone
marrow in a bag! What an
enormous thing
to experience as a seven year old. They
let him have the empty bag when it was finished--it's so sweet to see both Jaymun and Devon's names
together on it.
Devon spent the night at
the hospital. (I'm pretty sure Sean would have gladly bunked in with him as
well, since he and Devon are
best friends.) We tried to make it a fun "adventure" for Devon
and I think we succeeded, because he was disappointed to leave the next day. He
got to order
meals in bed, play
games with his mom and dad, and call
the nurses in when he needed something. He was the Hero of the Day on this unit
and I think he felt pretty important. (And his nurses
Evelyn and Stephanie
made him giggle when they "thanked" him for being so brave!)
From this day forward, Jaymun will
have
Devon's blood running through his body.
They are connected in a very special way for life.
Devon
went home today, feeling much better, albeit a bit sore when he walks. Dave
asked him last night if he would do it all over again for Jaymun
if he had to--and
Devon immediately said,
"
Of course I would." They are
blood brothers
in the truest sense of the word now.
Jaymun's recovery has just begun.
We won't have definite news of how the bone marrow transplant went until 30-50
days from now. It is a waiting game of the cruelest kind, for the next couple
of weeks may bring some intense infections and sickness Jaymun's
way. Please pray for his strength to get through the next months and endurance
for our entire family to weather this storm together.
Jaymun has proven that life is
worth the fight. We are daily inspired by his cheerful personality and the
blessing that he lives his life completely unaware that he's so sick. He's
taught us that happiness can happen anywhere, at any time...
and you don't
have to wait for it to find you. Devon
has this theory that since he himself
is so happy
and since Baby Jaymun has been so
happy all along
, that once his cells take over in his little brother's body, Jaymun will
be
twice as happy!
I think it's an excellent theory. These two are showing
signs of being
so much alike already
, both in looks and in character. Jaymun has proven that although he didn't have any choice
in how his life began with such a sad start, he has the final say in how he's
going to handle the circumstances thrown at him. He has shown us that
joy
is a choice. It's an interesting thing to realize that maybe, just maybe,
being happy is in his blood
