Jax's Update!

Hello everyone!

So sorry for the delay in updates, it's been a crazy week full of ups,
downs and unknowns, so I wanted to wait until I had some solid news
(and energy) to report it! Scotty is finally home for a very short,
but appreciated stay. As Kate briefly told you, he ended up in the ER
at Brigham & Women's this past Friday night due to an infection in his
incision area. He woke up feeling some pain and uncomfortable on
Friday morning so we went to his Urologist to get it checked out.
There was no obvious sign of infection (puss, fever, redness, etc) but
the nurse was concerned and thought he should be on antibiotics. Since
it was a holiday weekend, there wasn't a Dr. in the office and the on-
call coverage was Lahey Clinic in Burlington, MA and we did not feel
comfortable going to see someone new that wasn't familiar with
Scotty's condition. I got in touch with his nurse practitioner at
Dana Farber and she agreed that the ER at B&W would be the best
option. Scotty's Dad, Nancy, brother Stevie, Uncle Kenny and buddy/co-
worker Ryan were graciously over doing yard work and landscaping for
us and it was a bummer that we had to end our visit by heading down to
Boston, for what we thought would just be a few hours of IV
antibiotics. After finding out Scotty was neutropenic (dangerously
low on white blood cells) the count was .56 (normal being 5) and his
body would not be able to fight any infection on it's own, he was
admitted. Little did we know that he would be spending another 5 days
in the hospital when he was supposed to be enjoying recovery time at
home. Thankfully Scotty's mom came and spent the first night (and gave
him her amazing foot massage) so I could get the dogs situated and our
buddy, Jon Rogers, who is a "God-send" packed right up and headed over
to stay with the dogs the rest of the nights so I could be with Scotty.

It was a tough 5 days for us because it was a holiday weekend so they
were short-staffed, and we feel that things took longer than it would
have if it had been a normal weekend with regular staff. On Sunday,
he was taken down for a chest x-ray that was supposed to have been
done Friday night in the ER but went forgotten. When a couple of
Urology doctors first came and saw him a couple days in, they both
questioned if the infection area had been drained yet so it could be
tested. This ended up being done on Monday and of course results took
time. There was not an initial infection found in the drainage but it
released a lot of fluid which started making Scotty feel better. They
hold the specimen for 5-7 days to let stuff grow and by Wednesday, the
day he was discharged, some bacteria was found but nothing too major.
In order to go home, he had to continue on oral antibiotics and it was
a war with the insurance company to cover it b/c it was $3000/pill or
something crazy like that. That of course slowed down the discharge
process. A couple of days in, Scotty also started experiencing some
serious back pain (at that point the major cause of pain) and after
making a lot of noise about it, they ordered him an air mattress which
definitely helped the situation and made him more comfortable. We made
sure to request the mattress for his next hospital stint. You really
have to stand up and advocate for yourself in the hospital I've
learned. I watched (and caught) many things falling through the
cracks and when your best friend's life depends on these people and
their competence, it can get very frustrating. We were told by one of
the millions of doctors we saw over the course of the 5 days that he
could didn't see why he couldn't go home on Tuesday. On Tuesday we
were told he needed more time and we finally called them on the
conflicting info. Since his white blood cells miraculously shot up
into normal range (on their own) and the blood transfusions with
platelets he was given early on brought his red blood cells back up,
we were told they would get everything all buttoned up on Tuesday so
he could leave first thing Wednesday morning. We finally were out by
noon and I think the staff was happy to see us go at that point as we
made our frustration clear and Scotty was literally pacing the halls.
HAHA.

Scotty is upstairs resting and doing considerably well. It is going
to be hard to go back to the hospital tomorrow, but at least we'll be
taking another big step in his healing process. Dr. Pomerantz his
"top dog" Oncologist told him that he was doing GREAT and that this
setback didn't need to happen and although it was disappointing,
Scotty's body is handling what has been thrown at him pretty well and
he looked great. Stevie was awesome and sent me recorded audio from
his visit since I go home during the day and always seem to miss his
visits. He sounded so optimistic about Scotty and it made me so happy
to hear that. Scotty has had an awesome appetite and whatever he
craves he gets. Oh boy is he going to owe me once he gets through
this...haha. In all seriousness, he means everything to me and all I
want is him the most comfortable and happy he can be while he fights
this nonsense. Especially because we don't know how his body will
handle this next round of chemo, so I'm trying to bulk him up as much
as I can now. This is where I need you all to focus your prayers in
the upcoming weeks. He has to get admitted tomorrow and chemo starts
on Saturday. Paperwork says to be at the hospital at 8am tomorrow but
I'll be calling in the morning to request an evening arrival since his
treatment doesn't start till the next day. He will get 5 days of chemo
and he'll most likely be discharged on Thursday. At that point his
white blood cells will dramatically drop again so although he'll love
visitors, no germs allowed!

Thank you for everyone who has visited him so far, both at home and at
the hospital. I can't tell you how much this means to him. Seeing
familiar faces among all the nurses faces helps to keep his spirits up
and that is so important for him to fight for his life. Just make sure
in the upcoming days you check in before showing up just to make sure
he's available and up for visitors at the moment, since again we don't
know how round 2 is going to affect him. I have hung all of your
cards, notes and drawings all over the bedroom so it surrounds him
daily. He loves it. Thank you to my sister Jessica and her husband
David, for letting us borrow the air purifier that is running next to
his bed and for changing the locks on my condo for me. If any of you
know anyone looking for a 2-bedroom apartment in Manchester, my
tenants just bailed obviously causing more financial concern, so
please let me know. I'm trying to hire a management company to take
over for me so I can focus on Scotty. I never in my life thought that
I/we would be in this situation and I am so grateful to the many of
you who have stepped up and done some amazing things for us. My
cousin Tania, ordered "Super Scotty" purple wristbands to wear with
our Livestrong bands and they just arrived yesterday. I am hopefully
going to get them from her on Saturday and bring them to the hospital
to hand out. If you want one mailed to you, send me a self-addressed
envelope and I'll get it right out, if you could stamp it too, I'd
greatly appreciate it. Rebecca & Kate/Kris, your financial donations
were so unexpected and appreciated, your generosity humbles me. I
apologize if I'm forgetting any shout-outs and if I haven't yet
responded to texts or emails. I literally have to live minute by
minute and have a lot to keep up with. I read every single text and
email and listened to every voicemail. Every one means the world to me
and to Scotty too. (I forward all emails and share all facebook
comments with him). Please keep the love and support coming -
especially for Scotty's sake!

I think this will bring you all up to speed and I promise I'll update
you once he's back in the hospital. I will send you his room number
once I get it and update you as his treatment goes on. If I'm not
clear or forgetting something important, please call me on it. And if
I repeat things I'm sorry. The past month has been quite a blur.

Love, peace and happy summer to you all.

Jax (& Scotty)