Last time I wrote a blog Jonathan was developing an
infection. We were fresh out of the
hospital and on our way right back in. I
sit down tonight from the hospital room looking out the window. I’m beginning to enjoy watching the
helicopters land on the roof of the hospital.
After Jonathan’s last round of Chemotherapy, the seizure
like chills he was experiencing were in fact an infection entering his blood
stream. Upon awaking that next morning,
we went right into the ER. Jonathan’s
blood counts were practically nothing and he had developed a fever that was on
the rise. He had a crazy high pulse rate
and was beginning to experience chest pain.
That ended up being a very long week.
Jonathan felt absolutely horrible.
At one point during that week we had a little scare and I watched a
doctor stand over my husband and ask him, “If your heart stops, would you like
us to resuscitate you?” I breathed a
breath of fresh air as he tells him “yes”.
However he followed that up with, “ask me again in 3 months
though!” He was in horrible pain and was
diagnosed with Klebsiella. (A Bacterial
infection) They began treating him right
away and after platelet infusions, red blood cell infusions, tons of
antibiotics, etc. He began to feel better.
During that week, Jonathan and I had some very real
conversations. We are currently living
the life we will have while fighting cancer.
In the hospital, out of the hospital, back in the hospital, infection, excruciating
pain, fear and oh yeah, we miss our kids like hell. We are exhausted! What kind of life is this? And lets just be real, not negative, but
real. So if we do all of this, what are
the chances? At this point we know there
has never been someone this far progressed with inoperable Osteosarcoma, live. What is this doing to our family? What is this doing to our children, during
their most influential years? My husband
isn’t a quitter, but what he does do, is consider everything. Every option. Every outcome.
Every person. I think for him to
start considering other choices, he needed to be informed. So one day during the doctor’s rounds, he
asked the big question. How long would
he have if he stopped chemotherapy treatment?
He enjoyed his week at home and made the most of every
minute. He helped me here and there with
the prep for the auction. He worked on
Lego projects, took the kids to do a few fun things and then of course in seven
days played 4 rounds of golf. He
frequently would just fall asleep on the couch.
I don’t know how he does it… He just can’t miss out on any moment
because he is tired I guess.
Besides the conversation Jonathan and I had with the
oncologist, Jax came in at a close second for the hardest conversation I’ve
ever had to have. As we drive to school
I hear from the back seat “Mommy, how do guns kill you?” So I thought I would be very factual and
scientific with my answer. “Well Jax,
you know how a gun shoots out a bullet?
When the bullet hits a person it is going so fast that it goes through
your skin and inside your body where you can’t see. We have some very important things inside our
body that helps keep us alive. For
example, you know when Dr. Raj listen to daddy’s heart?” Jax interested says “yeah, he listens to
daddy’s heart beat.” “Yes Jax, If your
heart is hit with a bullet it can’t beat.
And if it can’t beat it can’t pump blood all around our body. We need blood to stay alive. Dr. Raj also listens to daddy’s lungs. Our lungs help us breath. If a bullet hurts our lungs, you can’t
breathe. So that is how a gun can kill
you.” Jax sits there for a minute
looking out the window as we sit at the first red light. As we approach the next red light I hear him
say “Mommy, is daddy’s cancer trying to hurt the insides of his body?” My heart immediately dropped. I was wondering when he was going to ask me
this… I am not ready, but I answered his question. “Yes Jax, Daddy’s bad guys are trying to hurt
the inside of daddy’s body.” He quickly
fired back, “are they trying to kill daddy?”
I sort of began to cry as we pulled into the parking lot at school. I put the car in part and turned around to
look at him as I answered his question. “Yes
Jax, the bad guys inside daddy are trying to kill him.” I think he was getting sad already and I hope
I didn’t make this harder for him by crying myself. So as he began to cry he asked me, “Is daddy
going to die?” I told him through my
tears that I didn’t know. By this time
he was crying pretty hard and saying “I don’t want daddy to die!” So I reached back and grabbed his hand and I
grabbed Jude’s hand as Jude just sat there completely unsure of how he was
feeling I think. I told them “I don’t
want daddy to die either. But I know
something for sure. Daddy isn’t going to
die today! So we need to make sure daddy
know we love him and give him as many snuggles as we can.” Then Jax remembered something from the book I
wrote him. Once again he reminded us we
need to be happy. Those bad guys hate
that. So we gathered ourselves and
walked into school holding hands the entire way. Then I cried the entire drive home. I don’t know if a mother could ever be ready
to answer that question… But I know I wasn’t ready!
Later that day Jonathan got a call from the people running
the trial out of Duke that we had applied for.
It is also an immune therapy drug using T-Cells but instead of using a
virus it is using a PD1 blocker. This
trial is in a stage 2 and is being used for Sarcoma cancers. It isn’t specific to osteosarcoma, but it is
showing some promise. So we are planning
on starting this trial drug after Jonathan has a set of scans to show us if the
chemo is even doing anything at all. We
are also still waiting to hear back from Houston on that trial as well. We know they have Jonathan’s pathology slides
and are working on the testing.
Last Saturday was our big day. Jonathan hosted his first golf tournament,
and I jumped into the deep end and attempted to throw a dinner and
auction. We set out to raise $70,000 to
make some updates to the oncology floor at the hospital. We were so taken back at the generosity of
family, friends and community members that were so supportive of our
cause. Jonathan announced one of our goals
for next year. We are excited because we
have already begun to help change Washington Law so that we can become a
charitable pharmacy and help people have access to medications they may not
have due to no insurance or medications insurance maybe wouldn’t cover. This project is actually already underway… Anyway, we are excited to say we exceeded our
goal and think our numbers are going to come in over $100,000 raised.
This Monday Jonathan checked back into the hospital to once
again start chemo. I think he may have
actually been looking forward to getting some rest! We worked on accounting stuff for Cancer Can’t,
watched some movies, took a few walks and had a few naps. It only takes a couple of days to get stir
crazy though. We are ready to be back
home.
Jonathan and I both really enjoyed listening to Sean speak
last Saturday. He is actually a really
cool guy. His goal, spread hope! He has this quote (I’m just making up the
numbers because I can’t remember…but you get the concept) “The human body will
last 30 days without food. It will last
6 days without water, but it will only last 30 seconds without hope. Because without hope we have nothing.” I think for all people hope is essential to
life. We have to know that things can
get better. I could easily see how
anyone in our position could begin to feel hopeless. The answer to Jonathan’s question was this:
If he stops all treatment he may have 6-8 months. 2-3 of which would have some quality of life. We hope that a T Cell Trial works for him and
he can be a first for a cure. But mostly
the doctor is hoping it will give him 2-3 years without chemo side effects. He can keep trying chemo and maybe make it 2
years doing that.
I find myself listening to a sermon on hope that was done a
few weeks ago. I seem to listen to it
over and over. It is my reminder that
the hope for Jonathan and I may be for God to give us a miracle. I mean we’ve given him one heck of a platform…
my last blog had 5,000 views. (Like he
needs a platform) And I will never stop
praying for that miracle. But maybe hope
isn’t just that miracle, But our true hope is not of this world. 1 Peter 1:6-9 6 In all this you greatly rejoice, though now for a little
while you may have had to suffer grief in all kinds of trials. 7 These have come so that the proven genuineness of your faith—of greater
worth than gold, which perishes even though refined by fire—may result in
praise, glory and honor when Jesus Christ is revealed. 8 Though you have not seen him, you love him; and even though you do not
see him now, you believe in him and are filled with an inexpressible and
glorious joy, 9 for you are receiving the end result of your faith, the salvation of
your souls.
This
scripture is such a huge reminder of what true hope is. Although we are sad a lot, we are also able
to find joy in a circumstance I would never choose. It is so interesting because in this sermon
the pastor quoted that quote that I never understood. ”It was the best of times, and it was the
worst of times.” I never knew how that
was possible until now. The other day as
I was making breakfast, Jonathan grabbed me in the kitchen and was having me
dance with him as he sang to me. Jude
yells over from the table “Dad, are you trying to marry mom?” So I was telling a friend about how I feel so
loved by him. Even though we are sad, we
are also so happy. And she reminded me
that there are people that may live their entire life, married, single or
otherwise, and although our time might be short. Most will never know a love like ours. So even if I don’t get 50 years with him, I
will always have that!
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