Friday, July 29, 2011

Back to Boston...

It's been a while since my last update, but as they say, no news is
good news! Scotty had done really well the last two weeks since his
last (second) chemo treatment. He is slowly getting his strength back and has even put on about 12 pounds!!! (He was down about 30, give or take.) He handled the last treatment really well, besides about 4 days of nausea, and with each day you could see him getting stronger. He is so amazing, his balance and grace through this whole experience is inspiring and extremely admirable.

I don't have much to report except that Scotty will be heading back to Brigham & Women's tonight to begin his third round of treatment tomorrow morning. We really hoped that since the new Dana Farber in
Londonderry is only 5 minutes from our house that he would be able to
do this round outpatient and be able to sleep in his own bed every
night. We learned that the reason for this is that his "situation" is
rare and the doctors in Boston didn't feel the team in NH has had
experience with his situation and wanted to make sure he was in the
best place, which although a bummer, we both completely agree. I will
be bringing him tonight (I still have to call and find out when!) and
his chemo will start around 8-10am tomorrow morning. I know they are
supposed to do a scan of the tumors so I'm not sure when the results
will be available, but as soon as they are, that is when I'll make
another update.

I know some of you have seen some of my updates on Facebook, but
Scotty has found himself a new hobby! RC cars! :) He's like a big kid
as he builds the kits at a desk set up in his room, paints and
decorates them... and then takes them outside to beat on. His first
purchase was the Lunchbox which was a kit that he put together as a
child with his father. Recently he just purchased the ClodBuster
which is a truck and he's been having a blast with that. It makes me
so happy to see him all lit up and doing something that makes him
happy and stress free. I'm attaching a picture that will hopefully put
a smile on your face!

Please continue your amazing support and keep the prayers, positive
thoughts, mail and visits coming. Please no drop-by visits without
checking in with Scotty first because each day is different for him on
chemo and too many visitors at once makes him uncomfortable. We don't
yet know his room number but he can give it to you when you check in
with him for a visit. I can't stress enough how hearing from you in
all the different ways you have reached out means more than any words
can describe and it's all of us as a team that is going to get him
through it. His friends and family mean SO MUCH to him so please
remind him that he is always thought of and LOVED!

Hopefully with the next update I'll be showcasing the new Super Scotty
logo! Mike Martell and I have been in collaboration working on a neat
little visual representation of our favorite super hero, so stay
tuned! :)

With MUCH LOVE, strength and peace,
Jax & Scotty

Thursday, July 14, 2011

Scotty's Back Home

Hi everyone!

I can't believe how fast time goes by between updates!  I apologize for not updating while Scotty was in the hospital (even though I promised!!!!), but I am happy to say that he is home after Round 2 of Chemo.  Thankfully it was a a rather uneventful 5 days, but yielded some very positive news!  One of the tests that were done were at the start of this round of treatment was to check his Tumor Markers. On Monday, Scotty got the results showing both markers were reduced by 90% (110,000 to 9500 and 40 down to 4)!  This is awesome news and Dr. Pomerantz said that this is where he wanted/expected him to be at this point.  

Scotty had requested to be on the same floor as when he had his first round of treatment and he was very lucky they were able to do so for him.  They were also able to order him his air mattress to keep him comfortable.  He had AWESOME nurses, most of which he was familiar with and he was in good spirits for pretty much the whole 5 days.  Towards the end he started feeling the nausea and some of the side effects of the poison being pumped into his body.  He had a rough ride home from the hospital last night with his brother and vomited a few times.  He got home and wolfed down some of his beef burrito that he was craving ALL DAY LONG!!!  (I'm telling you, he is off the rocker with his cravings). He is currently upstairs in his room, surrounded by all of the cards and other stuff you all have sent, as we wait out the next few days as his body starts to crash. His appetite is off/on and he comes up with sudden cravings (ie: burritos, gummy bears)  His biggest challenge is to drink 4 liters of fluid/day.  They are really pushing gatorade and stuff with electrolytes, which right now is actually better for him than water.  Tomorrow he we are going to experience the Londonderry Dana Farber Center for the first time as he has to get his "immunity shot."  We were also told we could get his blood tests done locally next week so that saves us a trip to Boston for his follow-up.  If all goes well, we won't see Boston for another 2 weeks when he goes for his 3rd round of Chemo. At that point they will hopefully do scans that will show the shrinkage of the tumors.  Everyone please pray that Round 3 will be all he'll have to endure and won't have to return for a 4th!  

Thank you to everyone for your continuous generosity and support. Scotty never seemed to have cared about mail before, but lately he has been asking me if there is/was any. I think we both look forward to it every day because when a card comes and someone says they're thinking of him (or us), it totally brightens our day.  And then it goes on the wall. I have put MANY tacks into our bedroom walls, but it's all worth it to see him surrounded by all your thoughts and love.  The other "stuff" you guys have been doing and sending has been amazing... just the thought puts me in (happy) tears.  And the visits have been great. Coming back to the hospital at night to hear of his visits always made me so happy.  I look forward to all of his upcoming home visits too. (Remember - no germs allowed)! And for those of you going above and beyond... I am forever grateful... more than you'll ever know!

Some of you have reached out for Super Scotty wristbands, so thank you!!!!  I got one returned in the mail today saying it was for a .20 non-machinable surcharge.  I think b/c they're not flat they charge more? So if you could throw 2 stamps (or the correct postage .64) that would be terrific.  For anyone who sent one with just a stamp, please don't do anything, I've got you covered. :)  If you don't want to deal with the postage, than come on over and pick them up in person!  We have got plenty!

I hope you are all doing well and enjoying the beautiful weather.  Please remember to be grateful everyday for what you have in your life, including your health.  If you wake up one morning and just don't have it in you, then think of Scotty and do it for him!  

Peace, love & happiness,
Jax


P.S. 
Please support Scotty, Lance Armstrong and millions of others by signing the petition below.  If they get 100,000 signatures by September, the petition will be hand delivered to the World Leaders at the UN Summit in NYC. Please help fight cancer!

Monday, July 11, 2011

Show your Support!

Looks like Scotty's bracelets are here!  Jax is asking for everyone who would like one to send a self-addressed stamped envelope to her at 11 Valley Street Derry, NH 03038.  These were a gift from Tania, Jacqueline's cousin (thank you!), and Jax has asked that everyone include some form of inspiration to hang on Scotty's wall in the hospital as he undergoes chemo "stuff that will keep his spirits up b/c as i was reminded today by one of my favorite doctors yet: the mind, body and spirit all have to fight cancer, not just the body."

There were also several requests of whether or not they were accepting donations, to which Jax (of course) replied that they were not, but Tania suggested that everyone send a donation along with their envelope (if they choose).  Remember, between the driving to Boston, the parking and tolls, the additional needs for someone going through treatment, and the fact that neither of them are currently working, those bills can certainly pile up fast! 

So please consider sending something if you are comfortable doing so!  Also, if you prefer, I have been accepting donations for them through my PayPal, which is k8callahan @ msn. com.  Again, please DO NOT feel obligated, but I know any amount would be greatly appreciated, and hopefully remove some of the stress from both Jax and Scotty!  If you would prefer to send a gift, I have a great list of items that will help Scotty feel more comfortable once the side effects of treatment start kicking in.  Feel free to contact me at any time!

Thanks Tania for ordering these amazing bracelets and allowing us to show our support!

Kate

Thursday, July 7, 2011

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)

Sunday, July 3, 2011

Just a quick note

This is Kate again.

I heard from Jax a few minutes ago and she wanted to pass along some brief info.

Apparently Scotty's infection is spreading and the doctors have decided that he will need to be in the hospital for the "forseeable future."  Obviously they are both very disappointed, and Scotty's spirits are pretty down right now.  She did however say that visitors would be welcomed, as long as they are healthy--they can't risk compromising his immune system any more right now.

If you would like to visit, he is at Brigham and Women's Hospital, at 75 Francis St Boston, MA 02115, Room 4B-32.

She will be trying to add a more detailed post later, and asks for "lots of prayers!"

Kate

Friday, July 1, 2011

Update from Kate

Hey everyone,

This is Jacqueline's friend Kate.  I spoke ot her a little while ago, and she wanted me to reach out and update everyone about Scotty.

He is currently back at Brigham an Women's due to an infection.  They are waiting for some test results, but so far they know he will at least be spending one night there, possibly more.  His white blood cell count is very low and he has been admitted to the oncology floor.  They are hoping this is something he will be able to fight off quickly, but for now it looks like they won't be permitting visitors.  Please send your prayers and positive thoughts their way that his WBC increases and he will be able to stay on schedule with his treatment. 

Obviously, they (and all their family and loved ones), need strength and support more than anything right now.

I will try to update you all as I hear from Jax--her cell phone is running low so she was worried about being able to reach anyone.

Kate