Full Circle
12/5/2006
As I sit here typing this, Jaymun
is getting another platelet transfusion. He had a transfusion just two days
ago, but this is to be expected when his body has been thrown into a tailspin
with the bone marrow transplant. We can always tell when his platelet count is
dropping because he gets nose bleeds easily. (Platelets are the components in
your blood that help with clotting.) He's also been a bit more irritable and
clearly not feeling so well. His appetite has almost disappeared and we are
constantly trying to coax him to drink an ounce or two throughout the day. We
try to balance the doses of morphine with how we think he's dealing with the
pain. As his blood counts drop down to zero, we know that there will most likely
be more issues to deal with, such as infections and mucositis.
None of this is easy to watch, but we have been prepared to expect that these
next few weeks will be especially difficult on Jaymun's
body.
This transplant should be the final step in his treatment. In
one week, Jaymun will be five months old. I can't
help but look back at all the months behind us. Five months ago, we had a baby
boy who arrived in this world with cancer. For nearly five months we have been
juggling a chaotic schedule of parenting, running a business, and living
full-time in a hospital. I am amazed to see how our family has adapted to the
night and day difference of what "normal" used to mean.
Five months ago, Jaymun> started
his first round of chemotherapy when he was three weeks old. Three weeks
old to the very day. Dave and I brought him to Children's to have his
central line inserted. We had to hand him over to the surgeon, who placed a
line inside of his tiny body that would extend out through a hole in chest.
(These tubes, or lumens as they're called, have allowed him to be hooked up to
his IV fluids, medications and chemo without needing to be poked with needles
daily. They also allow the nurses to draw his bloodwork
to be sent to the labs for testing.) I will never forget how small and fragile
he looked lying in his crib when they wheeled him out of surgery. I was sickened
by how those lines poked out of his little chest. I look at this photo of
Dave holding Jaymun
when he woke up from the anesthesia that day and it overwhelms me that our little baby had to go through such
devastating events at such a young age.
They escorted us up to the HOT unit after his surgery. It
was an unfamiliar place to us, filled with strange machines and medical staff.
The thought of staying here for months was frightening beyond description. I
dreaded it. I couldn't comprehend how I would be able to be separated for so
long from our other children. I had just given birth and now I had to cope with
recovering in a dreary hospital room, all alone and overloaded with those
wonderful post-pregnancy hormones.
Room 5514 was Jaymun's very first
official room on the HOT unit. We walked in with our little baby still sedated
from surgery, not knowing what to expect. It was then that we met She Whom We
Love and Adore. The infamous Nurse Bonnie, of whom much has
been written already on this website. She greeted us with a warm smile
and I knew, I knew that
if we had to embark on this journey of Jaymun's, I
would feel much better with her by our side. She has not disappointed my
expectations. Rather, she has far exceeded them. We have been blessed to have
her in our lives at this hospital. Blessed beyond measure.
Jaymun has had to move into a
sterile, pre-scrubbed transplant room. They sent in a special cleaning crew
that removed all the furniture and scrubs the ceiling, walls, floor,
even the inside of the heater vents. It takes hours for them to clean the
room in preparation. Before the patient can move in, the room is also inspected
by a supervisor. We then had to scrub everything we owned with special
wipes before transferring it all into his new room. (And when I say
"we", I mean "me"--Dave took flight before this particular
move happened!) There are twenty four rooms on this unit. We've stayed in Rooms
14, 6, 10, 2 and 20. I think it's significant to tell you that Jaymun's
final room is 5514 once again. The very room
he started in is now the room he's ending his treatment in.
When Jaymun was first admitted to
the NICU, his resident doctor was a Dr.Vander Lugt. If it sounds suspiciously Dutch, that's because it
is. Dave was thrilled to meet a fellow Dutchman in the hospital. (Being a
hearty mix of nationalities myself, I don't quite get
the whole "Dutch" thing myself, but apparently it was a huge selling
point with Dave!) Dr. Vander Lugt was the first
doctor to see Jaymun at Children's. He was the first
contact we had with any news concerning Jaymun's test
results, with his prognosis, and our main link with the attending doctors.
I remember him being a very tall, very gentle, very quiet man. When I recall
that first week of Jaymun's life and I bring back
memories of the NICU, Dr. Vander Lugt is closely
connected with every image I have of those early days. He was extraordinarily
compassionate towards our family and quite sensitive to the fact that we
had just been handed a bombshell with Jaymun's cancer
diagnosis.
The residents rotate throughout the hospital on a two week
and sometimes monthly basis. We've gone through quite a few residents during
our stay here on the HOT unit. The day after Jaymun's
transplant, the residents changed yet again. There are dozens and dozens
of resident doctors in this hospital. You will never believe who walked into
our room December 1st. The Dutchman himself.
Unbelievable. The very same room
and the very same resident. We wouldn't have planned this ourselves in a million years.
I'm not a superstitious person. I will never understand
people who base their entire life on reading horoscopes or having their palms
read. I don't believe that our future can be mapped out for us to know in
advance. But there are times that I can't help but see how God brings all
the events and circumstances together in just the right way at the right time.
Some would perhaps shake it off as mere coincidence. I know better than to
think that things just "happen". I wholeheartedly believe that it's
more than the planets aligning themselves in the universe. This room, this
resident, this whole experience..it's
been an emotional rollercoaster of ups and downs.
I'll never forget the beginning. I have yet to see the end.
But this journey of Jaymun's definitely has the
distinct feeling of coming full circle.
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