I have not updated my blog lately because we were waiting for news to share... and we do have some.
As always, it’s been an eventful couple of weeks!
We had two very
successful silent auctions! We could not believe all of the support
that we have received! THANK YOU! We have been able to pay off the
deductible from last year finally and pay for Jons medications when he
got home. We have also been able to catch up on our house payments and
bills. This makes me feel so much better!
We had a wonderful
Christmas!! Thanks to so many of you for giving Hayden a wonderful
Christmas!! It was so great to watch him open not only his gifts, but
ours too! For most of the gifts he liked the wrapping and boxes more
than the gift. (Now that all of the wrapping is gone, he is having lots
of fun with the new gifts.) I think his favorite right now is the fire
truck that has a loud siren. We have Laura’s sister and brother-in-law
to thank for this wonderfully LOUD gift! (...their son may get a drum
set for Christmas next year!)
We have really enjoyed
being able to enjoy the Christmas season with Hayden this year. He
started to realize who Santa is, and loves turning on the Christmas tree
in the morning! He, however, did not care for the real Santa. I am
sure it does not help that he only wants Mommy right now and she left
him on some guys lap and walked away! That’s okay - the crying picture
on Santa’s lap is on most 2-year old parents mantle! We feel that we
joined the club! And as far as New Years goes - well let’s just say that
we celebrated Brazil time for that!! By that time of the night we were
all sleeping!
After New Years it was
off the doctors we go (for a bone marrow biopsy)! We needed to see where
we are at after the high dose of steroids that I received to fight off
the CMV virus. Thankfully the biopsy came back clear - no signs of Leukemia
- can I get an allelujah!! It was a long seven days to wait for the
results. I think Laura did 20 projects in that time (cheaper than
therapy). We were so worried that it would come back, even the doctors
said there was a strong possibility, but I must have an angel sitting on
my shoulder! Praise God!
Although my biopsy came
back with no signs of Leukemia I am going to have another bone marrow
transplant. The reasoning behind this is the type of Leukemia that I
have is aggressive. We have seen this in the past. For goodness sake,
it took 11 months but the darn thing came back before. Up until now, we
had thought that it was an option, but we were waiting for a
confirmation. It was not a big surprise. This is another big step, and
is a little scary, but it seems to be the best option. Up until now we
have always believed that we have the best set of Doctors (rubber-gloved
(since its flu season) high-five to Dr. McSweeney for everything he has
done already for me) and the Nurses that have helped me get through
this the first time, so although I am not looking forward to another
transplant, its what I need.
They are currently
working on finding a donor and would like to ideally do this in the next
3-4 weeks. The transplant coordinator called and told me that they are
having no problems finding a donor - in fact - they have found several
10/10 matches. This really surprised me... I guess I am not as unique
as my Mom always thought I was!! (love you Mom). The transplant
coordinator was a little shocked by this though and said she has never
seen this many matches before.
Could we get anymore positive news???....
Oh, yes we can! As many
of you are aware, I am changing insurance companies to Kaiser. This has
definitely put a wrench in the system. But, we are very satisfied with
the high deductible plan, we only have to pay $3000 out of pocket (and
nothing else!!!). Right now we have to pay a deductible, co-pays and a
percentage. That is not including the price of all of the medicine. We
do have to change physicians, and this saddens me because we love where
we are at. They have become family to us (and by family I mean, we have
days where we don’t get along and do not like what they are saying -
but in the end we love em, trust em, and are glad they are on our side).
We are going to stick
with CBCI and the McSweeney team through the transplant and have Kaiser
in the background. This week I will meet my new Oncologist (here’s
hoping he gets my sense of humor) and Kaiser staff. They are going to do
all of the pre-transplant stuff (blood, radiation, chemo, etc.).
As I get ready for
another transplant I am reflecting upon my past 1 1/2 years and I am so
grateful for the time that I been given. It has been so wonderful to be
surrounded by so many great people who have made my feel special and
loved. Thank you very much. I would also like to thank all of you that
have donated to us. We really do appreciate it! This has allowed us to
keep our home. I would also like to thank you for making it possible for
Laura to be by my side (and Hayden’s) throughout all of this. I know it
has not been easy, but it will all be worth it.
Thank you also to
everyone who reads my blog. I know that I have not met many of you, but I
can feel your support. It is great to get all of your cards and
messages. We unfortunately have no way of adding a comment section to
this blog, so that is why we created the facebook page, www.facebook.com/jonsfight. I am also more than happy to hear from you on my email, noh@mac.com.
I will keep you updated (promise) and let you all know when my transplant is.
And remember, Life is still good, even with a few bumps in the road!
-Jon