Happy Winter!!
Wow…will it ever come to an end? Although it is beautiful to look at through the window, we
are certainly ready to be running and playing outside. It has been a long winter in the Leckey
house. Like everyone else, we were
unable to escape the variety of illnesses that passed form one of us to the
other. We are ready for spring!
We are very excited because we are preparing for our first
trip to meet Mickey in just 8 days!!
Nathan is beyond excited. We can not wait to see the look on his face
when he meets Mickey for the first time.
He has loved Mickey since he was little, so this will be an amazing
experience for all of us. After we
leave Disney we are all headed to Boca Raton to celebrate the wedding of Mike’s
bother, Bill, and his lovely wife to be, Meredith. I would say March is going
to be one memorable month!
Nathan’s last MRI was on February 9th. I did not have a chance to write an
update directly following the MRI, but I know so many of you loyally pray for
him and want to know how he is doing.
We are so thankful to have received the news that the latest scan showed
stability of the tumor again. This
is now the third scan where the tumor has remained stable. The best news of all is that if his
next scan on April 27th remains stable, Nathan will come off all
chemotherapy for the first time since September 10, 2012. Putting this into words is the first
time I have let myself really believe that Nathan may finally get a break from
these heavy medications. We have
accepted this is the only way, but there is nothing easy about watching these
toxic drugs go into your little boy every two weeks. We have had to face so many negative realities that it is
often difficult to let our guards down in fear of being disappointed. We are counting the days until they say
we all get a break from chemo! It is right around the corner.
Unfortunately, children who have received Avastin for one
year often have a higher regression rate than other standard
chemotherapies. It is similar to a
blood pressure medication. As long
as you take your medication regularly everything is fine. The moment you stop, everything can go
right back to where it was.
It is our ever hope that Nathan falls into the minority and is able to
achieve stability and stay off all medications for a period of time.
Although the tumor appears to be smaller than when we
started this treatment last May, many of his symptoms do not follow the same
pattern. The last few months have
been spent in countless hours of therapy and seeing new specialist to help
manage symptoms from the tumor. In
December, we learned that Nathan’s left vocal cord has stopped working. This not only impacts his vocal
quality, but it is the last protection the body has from food and liquid
entering the lungs. Managing a
safe swallow has been a challenge for Nathan since birth, but now we know the
cord has completely stopped working.
He will have to continue to work hard with a variety speech and
occupational therapist to retrain the functioning muscles to do the job of the
ones that are not working. He
continues to show left sided weakness in his leg, hand, and neck. Winter has been difficult because of
the constant illnesses. The common cold makes Nathan’s symptoms extremely
difficult to manage because the increase in secretions make it harder for him
to swallow, control his drool, and breath easily. He certainly has his good days and bad days. Today he felt strong and active. We cherish these days and do not take
them for granted. The constant chemotherapy
is starting to take a toll on Nathan.
We hope and pray that when he comes off therapy in a few months he will
gain back some of his lost strength.
We continue to travel to Boston every two to three months to
see a team of world-class physicians. They are true experts in their
field. We always leave the
appointments feeling like our Nathan his in the hands of the best. There is nothing easy about managing
his care in two different places.
His care is now coordinated between ten physicians and five
therapist. We often become
overwhelmed by the amount of time we have to invest in making sure we have
taken care of everything and notified everyone involved. Although the amount of communication,
travel, and paper work involved is like having a full time job, we would not do
it any other way. We know that we
are fortunate to have found so many great doctors and we will continue to do
everything necessary to make sure Nathan gets what he needs to be one step
closer to a cure.
We are so grateful for the continued stable scans. Although Nathan never complains, he
needs a break from all the medications, physically and emotionally. He is now
able to express his fears and wants to know why. He is learning to not trust unfamiliar faces at the hospital. He just looks at me and says, “What are
they going to do to me mom?” He has had more IV placements that I count. He knows the routines, he knows what he
has to do, and he knows that although it is painful he has to keep being
brave. He looks to us for comfort
and we know that is the only thing we can give him. We give Nathan every ounce of patience and love we have. It
is not easy at times, but we pray that God continues to give us strength to
support our little fighter.
You are all there to love and support us every step of the
way. We could never get through
this path that has been chosen for us without you. As you all continue to pray for Nathan and our family, we
continue to pray for you. Nathan’s
next scan on April 27th is a big one. We hope Nathan gets his much deserved break.
Love to all of you!
Mike, Beth, Nathan, and Samuel
