What a Year and 3 months!
Wow, we really let this update go out too long. Lots to tell you about. Here we go!
In June, we had an amazing trip to Florida thanks to the
wonderful Make-a-Wish foundation and our fantastic sponsor, Cincinnati-based
company, The Hillman Group. Excitement
built for about eight months before the trip, heightened by the Make-a-Wish volunteers
making periodic visits to our house to discuss the trip. They must have thrown two or three pre-trip parties! No question, Maya and Jaden were very much
looking forward to this magical trip.
The Make-a-Wish team provided a wonderful trip. We were picked up in a stretch limo, flown to
Orlando, greeted by a family from the Hillman Group and another Make-a-Wish
volunteer. The Hillman Group
demonstrated over and over their sincere commitment to the Make-a-Wish program,
our family and the love which makes it all possible.
The resort, Give Kids the World, was a fantastic place. The resort had a fantasy land theme with
characters and elaborate building designs.
There was an ice cream shop that opened at 7:30 in the morning and
closed at 9:00 at night! There was a
very nice pool with crazy water features.
We were so impressed by the Give Kids the World organization, people
running the place and the hundreds of volunteers that make it all possible.
We visited most of Disney World: Magic Kingdom, Animal Kingdom and Epcott. We
scheduled a princess event of course:
lunch with the princesses. Sam’s
younger brother, Mike, and his family were able to schedule a trip to Disney
World at the same time. It was great fun
to share with Mike, Shelly, Will and Elizabeth; the kids love each other and
had fun exploring together. Shelly made
bright yellow t-shirts for all of us, that read “Team Chamberlin” on them. They made it very easy to keep track of our
little travelers. Make-a-Wish not only
provided passes to Disney but also provided “go to the front of the line”
buttons which made us feel like royalty!
Make-a-Wish provided tickets to Sea World and Universal parks
as well. We had a very entertaining day
at Sea World. The animals were
unbelievable and they loved to splash the crowd. They had a massive three-story play
area/jungle gym, with nets for floors, in which the kids really enjoyed
playing. Feeding the dolphins was great
We went to Universal for a day and rode on a couple of Cat
in the Hat themed rides and took pictures with Sponge Bob and friends. The two highlights at Universal were a show
with Barney and a Curious George water park.
The Barney show was great – they had a Give The Kids the World
connection: at the end of the show, they
had us stay back for some time with Barney and one other Make-a-Wish
family. It was really cool, as the kids
really love that character. We stumbled
upon the Curious George Water park with no swimming suits, but what do you
know? There is a swimming suit vendor
right there to help us out. It was quite
a place with big water guns and massive buckets of water high up in the air
that would slowly fill up and when the bell rang, dump about a hundred gallons
of water on the kids below. It was a lot
of fun and Maya and Jaden had a blast!
We made a drive down to Sarasota Springs to visit another
HLH family, The Marshes, who have been a big support to us and do a lot for
bone marrow and blood donation and HLH awareness. Marla Grant, another big supporter who is
also dedicated to bone marrow and blood donation awareness in memory of her daughter,
joined us for dinner and catching up. Maya
heard a lot about Hannah Marsh during her treatment as she was and continues to
be such an inspiration to us and many others.
Jaden and Bridget had a lot of fun together as well.
The kids did great on the trip and were showered with gifts
at Give Kids the World. When we returned
we were taken home in another stretch limo.
As we pulled into the neighborhood it was a nice sunny afternoon so
everyone was outside playing. We got the
superstar treatment as the limo pulled into the driveway and the kids swarmed
around to see who was inside!
Before the trip to Disney World, Maya had been off IVIG for
a couple of months and was doing well.
(IVIG is a blood product packed with extra antibodies that help kids with
diminished immune systems. It takes over
1000 blood donors to make one unit of IVIG, so please donate!) Since things were going well Maya’s
re-immunization effort was allowed to begin.
The marrow transplant wiped out her previous immunizations so she had to
start from scratch. She did well with
the first three rounds of vaccination shots.
This is quite a step towards normalcy that we are very happy Maya has
With the need for IV medications going away, the risk of
having a central line in her body was outweighing the benefits, so it was
decided the central line (port) and the G-tube could be removed. We scheduled the procedure for soon after the
trip to Disney World. Maya was a little
scared but excited about the new activities she would be able to do, namely
riding her bike without training wheels!
This was a big moment, as the central line was a big symbol
of Maya’s long journey, from near death to recovery. The central line was the device that made it
possible to deliver the multitudes of noxious chemicals that halted HLH from
killing Maya, wiped out her defective marrow, and wiped out the first donated
marrow after the first transplant didn’t work out. The central line allowed the donors’
life-saving marrow and hundreds of medications to be delivered while Maya
recovered in and out of the hospital.
For most of the central line’s existence, it stuck outside of Maya’s
body and had to be covered with a big, very sticky dressing in the middle of
her chest, to keep bacteria from infecting her fragile body. That dressing had to be changed weekly, by
pulling it off her chest and re-applying a new one (PAINFUL). Now, that darn port was getting pulled
out….hopefully forever. It signaled that
Maya was done with this horrible episode of her very young life. And for Mina and Sam it meant their baby girl
is going to make it.
Maya had been asking us for a while to remove the training
wheels from her bike, and we told her we would after the port was removed. It didn’t take long after the surgery for her
to remind us it was time for the training wheels to come off. Sam held on to the back of Maya’s bike and
they made several tries at it. Maya took
a break then the next day was practicing again, showing us yet again her
persistence and patience with herself.
Within 2 days she was riding back and forth, down the block…and smiling
from ear to ear.
Jaden caught the fever too, but only after he learned he
would be getting his friend and neighbor Jeremy’s old bike. Jaden showed he had been paying attention by
taking off on his first try! Both kids
on their bikes…it sure is fun to watch.
Mina went back to finish her fellowship in nephrology at the
University of Cincinnati in July of 2012.
The hospital stands right across from the Cincinnati Children’s. In fact she can the see the bone marrow
transplant floor from where she works.
Hours are super long, sometimes 15 hours a day, but she is very excited
to finally go back and finish what she had started 3 years ago.
Sam is working from home mostly and makes trips occasionally
in the region to visit project sites and prospective customers. He has taken over the morning duties with the
kids and gets to have lunch with Jaden nearly every day. Sam is in line to run another marathon this
year if all goes to plan.
A few weeks ago Maya had a follow up immune function study
to check the progress of her recovery, and we are happy to report that
everything is looking good!! She has proceeded
to the next immunization and after the next one she will be caught up to her
peers! We are so blessed and happy about
how far Maya has come and we would not have done it without all your
support. We have not done a good job
keeping you up to date and we regret that.
Please know we have felt your good thoughts and prayers and have been
having a great time. We could not be
happier and more thankful for all the prayers, well wishes, gifts, donations
and kind gestures from so many people, not to mention the life-giving donations
of Maya’s marrow and blood donors. Thank
you and God Bless!
Ps. I just noticed we
can have 100 photos in the gallery so please check out the new pictures I
uploaded, of the amazing progress Maya has made!