Last Wednesday morning Jax woke up and you could just tell
he woke up on the wrong side of the bed.
I asked him to get dressed for school and he decides his pants didn’t
feel right. So we changed his pants 3
times. Then as he sat and ate breakfast
he was mean mugging Jude the entire time.
He was rude to me and just mean to Jude.
So as I sat down to eat my eggs with the boys, I began to have a little
talk with Jax. I explained how each day
when we wake up we make a choice. We
decide if we are going to be happy and enjoy our day, or we can decide if we
are going to be grumpy. If we choose to
be grumpy our days usually are going to go much worse than if we chose to be
happy. People don’t want to be around
you and include you in fun things if you are grumpy. I asked if he thought if he could choose to
be happy today instead of grumpy. He sat
there for a few minutes and then began to smile. He said he wanted to be happy and we then
began to joke, laugh and have a much better day.
I feel like this is a choice I am consciously making every day
myself. If I decide to focus on the
things that make me sad, it effects my entire day. So Jonathan and I are really trying to spend
each day consciously choosing how our day is going to go. How we are going to look at each day and what
attitude we are going to have. One day
Jonathan actually said to me, “I’m not going to die today, so why are we wasting
our day on crying?” As a result we are
choosing to enjoy each day to the fullest.
So today I am writing this blog from the New York JFK
airport terminal. Jonathan and I just
had the most incredible week! When Jonathan’s
cancer came back, he made a bucket list of things he would like to do. Some of them I laughed at, and others we
decided to make happen. If you know
Jonathan well, you can just guess what type of items he would include that I
would just laugh at… No need to explain.
Anyway, seeing Time Square in New York was on his list. So I booked the airline tickets around
treatments. I then called my cousin who
just started working here in NYC and told him to plan amazing activities for
us. And did he ever! Most people can live 90 years and never do
any of the things we got to do this week.
I don’t need to list out our entire trip, but the stand out event was
our Tuesday dinner.
When we arrived we were greeted by a guy that had our name
and the entire reservation list memorized.
This was the first time we have ever had a maître d’. It was amazing! We had a 14 course meal with wine on the menu
that costs more than my car. When I got
up to use the restroom, the maître d’ walked me there, and each employee you
walk past, bows at you. Enough
said! Luckily by the end of the evening
we found out our maître d’ was a lower middle class kid from Brooklynn and he
actually loved our inappropriate humor and the fact that we had no idea how to
use a French sauce spoon. In fact for our parting gift, he gave us each
a real silver French sauce spoon wrapped with a bow and printed for us, on very
nice paper the history of this absurd slightly useless sauce spoon. Our evening ended with us joking around with
Questlove, the drummer on Jimmy Fallon, about throwing knives at this birthday
balloon that escaped from a guest. Oh
and yes, we did have escargot! Growing
up I always had escargot in my mind as the food rich people ate. We were so far out of our league at this
restaurant but it was an absolutely incredible experience. This night along with seeing a live Jimmy
Fallon show and box suite seats at a New York Giants game. The week could not have been more fun.
So now we are on our way back home to see our beautiful boys
AND to officially start a medical trial drug.
Yep, Jonathan was accepted for compassionate use of the drug out of
Duke. Today we met with Dr. Raj and will
discuss our decision of starting the drug.
When we were leaving for New York he called to chat with us about
Jonathan’s scan results from the chemo.
After completing 2 rounds of the ifos etop drugs they scan to see if you
are responding. To refresh your memory,
roughly 25% of osteosarcoma patients respond to this chemo regiment. Of that 25%, for only 5% of those, this
option is curative. And curative only in
conjunction with surgery. For Jonathan,
that means loosing his leg and now a double lung surgery. (which would be very hard to even find a
surgeon who would do that!) So the
results… the tumor in his pelvis did in fact shrink. The multiple tumors in his lungs are stable
and unchanged. So now we know we fall
within that 25%. However because the
lungs didn’t change, we assume we do not fall within the 5%. (This is what Jonathan and I are
concluding) Our oncologist is on the
train of thought that we continue chemo as long as it is responding. It will buy us more time. We are not on that same train! We know we have been approved to start the
use of this trial drug from Duke and know that this drug has far less side
effects than chemo. We don’t know if it
will be effective or not, but at least it offers Jonathan some quality of
life. So today we learned Jonathan is
approved to start the trial on Wednesday.
The drug from Duke is a phase 2 trial drug called Keytruda. Jonathan was approved to use it here in
Spokane, and our oncologist can administer it.
This drug uses immunotherapy but no virus. The Houston trial that we are still waiting
to hear from uses the chicken pox virus.
The way this drug works to the best of my knowledge is the following:
The reason your body’s immune system does not try to kill
cancer is because it is technically your own body. It is an over production of your own
cells. But because it is still your own
cells your immune system is told not to attack it. This drug is designed to block the mechanism
on the cancer cell that is telling your immune system that it isn’t
foreign. If this works effectively, your
own immune system will begin to attack the cancer. The side effects include pain and swelling at
the site of the tumor, slight nausea and diarrhea for a couple days after the
infusion. There are some risks of liver
toxicity, and adrenal side effects. There
are other uncommon ones, but nothing like chemo! Jonathan will be getting an infusion of this
drug every 21 days. It is a 30 minute
infusion that can happen at the doctor’s office.
Thank you to those of you who have been tirelessly praying
for Jonathan to get accepted to use a trial immunotherapy drug. This is potentially huge for him. We would like to ask for more prayers. We would love for this drug to work effectively
for him. We also are hoping for very few
side effects. Pain maybe will be
welcomed, because typically that means it is working! But little nausea etc. would be awesome. Something that would allow Jonathan to have
some quality of life while fighting this.
We hear most people breeze through this treatment. And as always, God could give us a miracle
and just take this from Jonathan. I find
myself stopping in my tracks and asking God to stop time. I can’t think about months from now because I
go to that bad place, but I find myself not wanting anymore tomorrows to
come.
