Day 1: Pulmonary (lung capacity) testing -- blowing into a party blower
to practice for "the big machine". Travis enjoyed these tests,
and tried really hard. (It was also the first of the day!) Lab tests --
his blood counts were good. Then Bone Marrow Aspiration (taking a sample
of his bone marrow) -- not fun. They had to do it several times to get marrow
out -- has never happened before with Travis. Thankfully, the drugs they
gave Travis helped him forget the whole thing after it was over. (I didn't
get over it so easily -- as a parent, this was a toughie.) Then Echo and
Electro Cardiograms, physical therapy testing, and CT Scans.
Travis wasn't allowed to eat after a certain time, and we missed our
window to feed him because we were in the middle of another test, so he
wasn't able to eat from 9:30 am until 6:30 pm. To be honest, that was among
the toughest things for him to deal with. (I even snuck eating a granola
bar in the bathroom -- I was SO hungry! I felt incredibly guilty afterward,
but then realized it didn't help Travis if I was headachy and crabby too).
We were kept waiting 2 1/2 hours for the CT scan at the end of the day (some
trauma case had to be put before us), and Travis had to drink this orange
dye "koolaid mix" for the test. He got even with the staff for
keeping us waiting though -- he was so hungry that it made him sick. He
"yarped" orange dye all over the waiting room floor. Guess next
time they'll put us at the FRONT of the line! We did have a good laugh at
that one! After playing "prisoner" with Travis tying me up on
the gurney with velcro straps for about an hour or so, I was out of creative
parenting ideas. Travis was laughing like crazy, I was going crazy. Luckily,
we were brought in before I "blew". The tears came (for me) at
about 6:00 p.m. as I watched Travis finally fall asleep on the "bed"
of the CT machine as they finished the test. He was exhausted. Me too.
Also, the first day was consultation with the transplant doctor. I call
it the Reality Chat. This scores VERY high on the "no fun" list.
While we had been told all of this before, it is important for the medical
team to articulate it several times, because we are hit with so much at
once and it is not easy stuff to hear. While we all have high hopes that
this will in fact, ensure Travis' survival and cure, there is a great deal
of risk ahead. The first 100 days will be critical, as much can happen.
Believe me, you don't even want to know all the potential life-threatening
and other side effects of the chemo, radiation, the bone marrow transplant
itself... We were also informed of long term potential side effects -- likely
inhibited growth (requiring growth hormones for many years) and sterility,
possible relapse, potential secondary tumors years out, and possible intellectual
development issues. There are so many unknowns in treating this disease,
that any, all or none of these things could happen. We'll opt for none of
the above but take what is handed out and somehow get through it.
Day 2 was Radiation preparation -- X-rays and consultation. Not fun either.
Felt pretty ominous to be in the CAUTION -- RADIATION area. But we know
this has to be done. We went as a family. Felt this was important for all
of us to know what this was about. Then Joe and Travis proceeded with psychological
testing, nutritional counseling, more blood counts and further consultation
with the medical team. Another long day, but the playrooms at the RM House
got the boys in high spirits before the ride home. Joe and I were pretty
subdued. Emotionally exhausted.
Other sweet news: Travis' Kindergarten teacher has been marvelous in
helping him feel a part of the class even though he won't likely attend
for manymonths yet. Travis got a private tour of his room, was shown his
locker andeven got "homework" from his teacher. He was THRILLED!
Today, he received a special box of school supplies from the school and
the supply company, as encouragement for him to recover soon and come to
school. The class will be videotaping messages and events for Travis, and
he will be sending a tape introducing himself to the kids as well.
Spencer and Travis both have been assigned "big brothers" through
Chai Lifeline, a support organization. The big boys met the little boys
last week and it was an instant success! Spencer feels so special to have
such individual attention from a "grown up brother" who is so
much fun. Their next "date" is to dig in the dirt. Sibling issues
are quite difficult with all this attention on Travis, so we are blessed
to have this support for Spencer with his brother Zvi. Travis feels reassured
with his sweet big brother, Jeff, who is a cancer survivor and who shares
many interests in common. I think they've planned making origami and paper
airplanes and playing Uno on their next "date"! And they will
stay in contact however possible during the isolation time in Milwaukee.
An INCREDIBLE old skating friend of mine (and a computer industry contact
of hers -- she's in the business) have donated a laptop computer to Travis
to help him pass the long hours in the hospital. (Thank you thank you, Sherri!)
Travis is SO excited to write stories on the computer and play computer
games. He is so proud. Joe and I think it's a hoot that Travis has a better
computer than we have!!!
My colleagues from Pecos River/Aon Consulting sent Joe and me gift certificates
for pampering of our choice at a day spa before we leave (and then neighbors
added to the services!). I jumped on it -- and was facialed, scalp and foot
massaged and manicured to complete relaxation oblivion. Saved the back massage
for home -- my brother is visiting and is a trained masseur! HOORAY! If
you needs gift ideas for your stressed out friends or family who are in
need of pampering, there you go -- this was TERRIFIC!
Joe, the boys and I know how truly blessed we are to have people making
these kinds of gestures to help Travis and our family, from the meals, cards,
gifts, calls, lawn mowings, errand support -- you name it. We now know the
real value of helping others in need and know that there are many who lack
the support network that we have. We are humbled and grateful and are determined
to continue the cycle of giving when all this is behind us.
We are continuing to plan as best we can for the upheaval to our daily
lives and have received many helpful tips from other BMT families and RM
House guests. Other than that, thanks for hanging in there with these updates.
It's like therapy for me to write and feel that you want to know how things
are going, and it's a discipline I know I must practice so we never forget
the feelings, emotions and actions that took place at this time in our lives.
Thank you for caring. We do know you are there. Thanks for the prayers.
We feel them.
Love,
Melanie, Joe, Travis and Spencer
P.S. Admission date: 9/10/98. Transplant date 9/17/98.
Home with two healthy children: ASAP!
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