Hey everyone!
Scott has been home since Friday evening (but boy what hell discharge
and the traffic on the way home was!!) He's since been happy in his
own bed and being waited on hand and foot. His first meal request was
pizza, and our amazing friend Scott (Hayward) came over and replaced
our bedroom air conditioner that night so he would be immediately
comfortable. He's getting around on his own and although he spends
most of his time upstairs resting in bed, he gets up and about and he
is remarkably strong considering what he just went through. I just
made him a Shepherd's Pie and he's making his way downstairs to enjoy
a home cooked meal now that his appetite is finally (slowly) coming
back.
On Sunday afternoon, Joyce (Scotty's Mom) and husband came for a visit
with Aunt Pat & Uncle Dave. It was a nice visit and Scott had Joyce
shave his head, and he finally got to shave his beard (he was asked in
the hospital if it was a Bruins playoff beard...hahahha). He hadn't
started losing his hair yet, but he figured he just wanted to get it
over with. I went out and bought him some beanies to keep his head
warm and comfy.
Today he had a check-in at Dana Farber, where we got the latest on
what's going on. Right now Scotty's white blood cells are extremely
low, which is expected at this phase after chemo. This is a very
critical time as any sudden change or fever could mean something
serious, but we were told that this will get better as the days go
on. He was slightly dehydrated and he is also very low on phosphorus
so he has been given a supplement to address that. Ultimately he'll
start feeling better and stronger right up until his next chemo
treatment and then he'll go through the process all over again. The
nurse practitioner he saw was awesome. She took her time, answered all
our questions and honestly was the most optimistic out of any of the
medical staff I've talked to so far. She gave me the warm and fuzzy
feelings that I've been longing to feel since Scotty's health took a
turn for the worse. Yes, he is in pretty bad condition... but it is
CURABLE. And for someone with Scott's strength and determination, it
is inevitable that he will win this fight against cancer!
Scotty had a visit with Billy, one of his oldest and dearest friends,
for a good part of yesterday and I tell ya, I haven't seen him light
up like that for a while. His friends and family mean a lot to him
and something I've noticed is that he's starting to feel lonely. He's
got me and the dogs... but come on, we're only so entertaining and for
so long! In the next couple days when his body starts getting
stronger, he could really use some visits from his support system. He
loves getting cards and emails... that has seriously been huge when
he's started to feel down, but nothing can beat real life interaction,
especially as he's wrapping his head around why this is happening to
him. Happy and positive visits only and leave the germs at home!!! :)
Shoot me an email or text myself or Scotty if you want to come by! (my
cell [removed])
Lastly, Scotty's next 5 days of chemo start on Friday, July 8th. I'm
told I'm to call at 9am that morning to find out what time to bring
him in... so I'll keep you posted as I know! We don't know what side
effects the next round will bring, but let's all pray (and think
positively) that he will do as well as he did with the first.
Thanks for all your love and support. And remember to live for today
because you just don't know what tomorrow might bring!
Peace & love, Jax
Wednesday, June 29, 2011
Email from June 23, 2011
Hey everyone, I'm going to make this quick b/c I've got a lot to do on
very little energy... because... Scotty is coming home tomorrow!
Scotty has amazingly and gracefully finished 5 days of aggressive
chemo (ending last night). They were going to let him go home today
but due to some complications with a blood clot he is experiencing
(and has been being treated for), they are going to keep him just to
prepare him for his discharge. He has a blood clot in his thigh area
due to some enlarged lymph nodes and they are also pressing on his
urine lines (for lack of better wording). This is causing one kidney
to work harder to compensate for the one that is not draining
correctly. His tests show he is not having kidney failure, they just
want to make sure that both can do what they need to do until the
cancer cells and/or blood clot start shrinking/breaking apart. They
were going to stick a tube out his kidney to drain it and send him
home with it so it was a blessing to learn this morning they did not
feel they needed to do so (especially since it would just be another
opportunity for infection). One of my jobs as Scotty's caretaker will
be giving him his daily "fragment" shot in his stomach which is to
treat the blood clot. I got to practice today on an orange with
saline injections and I get to make my "nurse jackie" debut tomorrow
morning. :)
Tomorrow before he leaves he will be going to Dana Farber to get an
"immunity shot" The next couple of weeks his immune system will be at
an all time low so this will help him with his blood cells. Because
of that, if you want to visit, we ask if you are sick, or have been
around anyone who is sick to think about waiting to come by. We also
don't know how he's going to feel day to day so that will also dictate
visits. He misses you and is going to need all of your love and
support as he continues this journey of taking back his body. He has
ups and downs emotionally and that is where some of you are going to
have to help me remind him how amazing and loved he is so he will
continue to fight as awesomely as he has.
He will be home for 2 weeks before he goes back to Boston for another
5 day chemo stint. We're not sure if that process will happen 3 or 4
times before they rescan him. Please keep your prayers coming, you
have all been so amazing with your cards, texts, emails and calls. We
are so blessed to have such amazing friends and family in our lives
and we wouldn't be able to get through this without you. Scott is
doing remarkably well for what he just went through and I know it has
to do with all the love and support and prayers. I think Scott is
being prayed for by more people in this world than any of us can
fathom based on the amount of prayer chains people have added him/us
to. Thank you!
For those who keep asking if they can help in some way, don't worry,
we'll find stuff as the days go on. I'm sure the first comment out of
his mouth tomorrow will be about how long the grass is already. :)
Asking for help has never been my strong suit, but this experience is
changing and growing me in so many different ways. I'll FIO.
So much for quick huh? I guess I'm just really happy to report good
news and can't wait for my Scotty to come home!!! He has so much more
to go through but I am on cloud 9 after leaving him this morning
looking so good after experiencing 5 straight days of poison being
injected into his body. He's so strong, he is such a fighter... he is
a survivor!
Love to you all and can't say it enough but thank you, thank you,
thank you!
Peace, Jacqueline
very little energy... because... Scotty is coming home tomorrow!
Scotty has amazingly and gracefully finished 5 days of aggressive
chemo (ending last night). They were going to let him go home today
but due to some complications with a blood clot he is experiencing
(and has been being treated for), they are going to keep him just to
prepare him for his discharge. He has a blood clot in his thigh area
due to some enlarged lymph nodes and they are also pressing on his
urine lines (for lack of better wording). This is causing one kidney
to work harder to compensate for the one that is not draining
correctly. His tests show he is not having kidney failure, they just
want to make sure that both can do what they need to do until the
cancer cells and/or blood clot start shrinking/breaking apart. They
were going to stick a tube out his kidney to drain it and send him
home with it so it was a blessing to learn this morning they did not
feel they needed to do so (especially since it would just be another
opportunity for infection). One of my jobs as Scotty's caretaker will
be giving him his daily "fragment" shot in his stomach which is to
treat the blood clot. I got to practice today on an orange with
saline injections and I get to make my "nurse jackie" debut tomorrow
morning. :)
Tomorrow before he leaves he will be going to Dana Farber to get an
"immunity shot" The next couple of weeks his immune system will be at
an all time low so this will help him with his blood cells. Because
of that, if you want to visit, we ask if you are sick, or have been
around anyone who is sick to think about waiting to come by. We also
don't know how he's going to feel day to day so that will also dictate
visits. He misses you and is going to need all of your love and
support as he continues this journey of taking back his body. He has
ups and downs emotionally and that is where some of you are going to
have to help me remind him how amazing and loved he is so he will
continue to fight as awesomely as he has.
He will be home for 2 weeks before he goes back to Boston for another
5 day chemo stint. We're not sure if that process will happen 3 or 4
times before they rescan him. Please keep your prayers coming, you
have all been so amazing with your cards, texts, emails and calls. We
are so blessed to have such amazing friends and family in our lives
and we wouldn't be able to get through this without you. Scott is
doing remarkably well for what he just went through and I know it has
to do with all the love and support and prayers. I think Scott is
being prayed for by more people in this world than any of us can
fathom based on the amount of prayer chains people have added him/us
to. Thank you!
For those who keep asking if they can help in some way, don't worry,
we'll find stuff as the days go on. I'm sure the first comment out of
his mouth tomorrow will be about how long the grass is already. :)
Asking for help has never been my strong suit, but this experience is
changing and growing me in so many different ways. I'll FIO.
So much for quick huh? I guess I'm just really happy to report good
news and can't wait for my Scotty to come home!!! He has so much more
to go through but I am on cloud 9 after leaving him this morning
looking so good after experiencing 5 straight days of poison being
injected into his body. He's so strong, he is such a fighter... he is
a survivor!
Love to you all and can't say it enough but thank you, thank you,
thank you!
Peace, Jacqueline
Email from June 21, 2011
Hello everyone and sorry for the delay in updates. Days have been blending together and I've been pretty exhausted driving back/forth to Boston and spending the nights at the hospital. Scott is doing well after day three of chemo. He had some issues with the pain meds causing intense hallucinations so they changed them today and he's been zonked out all night. He has also been having really bad hiccups and they've tried to cure them with different things and nothing seems to work. Oddly tonight, as soon as the nurse gave the new pain meds they stopped, so we may be on to something.... (imagine having hiccups straight for 48 hours, poor guy!!!!) It is confirmed that there are nodules in his lungs and some in his liver which has caused it to swell pretty large. He is also very swollen in his surgical area. He's been experiencing serious fluid buildup in his legs and it's being monitored. He's on blood thinners in case there are some blood clots and I believe tomorrow they are going to see if they can work around chemo and do some tests to see what's going on. There are still some tests they have to do like to check his stomach once the swelling goes down. We are taking it day by day. We were told that on day three he would start to feel the nausea and sleepiness and such symptoms of the chemo. Luckily he has not been experiencing any nausea yet, and I pray to God that continues. He is so strong and he is surrendering to the treatment bravely and I'm so proud of him. I admire his grace through all of this. If chemo goes well the next two days, he will go home on thursday (possibly). There are other complications that could arise in the next few days and they need to keep a close eye on him. From there he will be 3 weeks off at home and then come back to Boson for 5 days on. That will continue 3-4 times and then he will be rescanned. Before he's discharged he'll receive an immunity shot but he will be susceptible germs so when you plan your visits, please make sure you are healthy and haven't been around germs that you can spread to Scott that could compromise his health. I think that's the best I can do for an update for now. It's been a long week I'll tell ya... and there is just no such thing as sleeping in hospitals. Today i got to go home and sleep on the hammock for a while which was really nice. I'm doing the night shifts and his amazing family is doing the day shifts. He is surely loved (and you all have made that obvious with your texts, phone calls, facebook messages, cards, etc) I apologize I have not been able to connect with you all one on one but I really am trying to put all my love and energy into Scott right now! If you have any questions please write back! I hope you're all well, and once this craziness is over we're going to get together to celebrate! Oh, one more thing! We're all wearing the yellow LIVESTRONG arm bands in support of Scott. I believe you can buy them at Bobs for $1. Once he is cured, we will all add the survivor band, which ironically is Scotty's favorite color: purple! And as if I need to remind you, PRAY, PRAY, PRAY! He's got a tough road ahead of him but he's going to do it, he needs the power of prayer and positive thoughts, so keep them flowing. Send me anything you want me to tell him, a joke, a picture, anything! and when he's coherent I'll share it with him. I know you all want to help in some way, but just thinking of him, praying and envisioning healing is what he truly needs! peace, x, o, jax please pass on to your own distribution lists or to anyone i accidentally forgot.
First Email--June 17, 2911
Hey everyone,
Scotty is comfortably in a private room at Brigham & Women's as of
yesterday. They've started many tests today and has increased his
pain meds to keep him comfortable, because of that, visitation is
tough and we just ask that you check in with me or him before
heading down there to see what kind of day he is having. Once he is
able to treat at home through the Londonderry Dana Farber, visits
will be welcomed all the time, it's just this initial process is a
minute to minute thing and the last thing we want is for Scotty to
get overwhelmed. I KNOW that Scotty would LOVE to hear from you
all via cards and any love notes to remind him how strong he is and
that he's going to beat this.
The floor he is on does not accept flowers or outside food so cards
or letters that he can hang on his walls to make his room more
homey would be great. Not sure if this is the "official" way to
list the address, but it's good enough.
The address is:
REMOVED
Please send him love and support. He is such a strong fighter...
but each time he is reminded about how much he's loved and being
rooted for, he's only going to get stronger.
Peace and love,
Jax
Scotty is comfortably in a private room at Brigham & Women's as of
yesterday. They've started many tests today and has increased his
pain meds to keep him comfortable, because of that, visitation is
tough and we just ask that you check in with me or him before
heading down there to see what kind of day he is having. Once he is
able to treat at home through the Londonderry Dana Farber, visits
will be welcomed all the time, it's just this initial process is a
minute to minute thing and the last thing we want is for Scotty to
get overwhelmed. I KNOW that Scotty would LOVE to hear from you
all via cards and any love notes to remind him how strong he is and
that he's going to beat this.
The floor he is on does not accept flowers or outside food so cards
or letters that he can hang on his walls to make his room more
homey would be great. Not sure if this is the "official" way to
list the address, but it's good enough.
The address is:
REMOVED
Please send him love and support. He is such a strong fighter...
but each time he is reminded about how much he's loved and being
rooted for, he's only going to get stronger.
Peace and love,
Jax
Catching Up
Hi all,
This is Kate, a friend of Jax. I started this blog so she would have a more simple way to update everyone on Scotty's progress (because she has enough to do)!
I will post the emails that she has forwarded me and if you have any additional ones to add, please feel free to send them to me at k8callahan @ msn. com (without the spaces).
Feel free to sign up for automatic updates, post encouraging comments, and pass this site on to anyone who knows and loves Scotty and Jax!
Kate Callahan
Also, if you are looking for a way to help, we will be setting up a calendar to sign up for bringing meals soon (most likely after Scotty's next trip to Boston).
I am also looking into setting up an account to accept donations to help out with expenses (trips to Boston, parking, meals, gas, etc.) but in the meantime will be accepting cash donations through PayPal at my email address listed above. If you would like to send something, you can send to myself or directly to Jax and Scotty (please email me for the addresses).
Thanks everyone and Spread the Hope!
This is Kate, a friend of Jax. I started this blog so she would have a more simple way to update everyone on Scotty's progress (because she has enough to do)!
I will post the emails that she has forwarded me and if you have any additional ones to add, please feel free to send them to me at k8callahan @ msn. com (without the spaces).
Feel free to sign up for automatic updates, post encouraging comments, and pass this site on to anyone who knows and loves Scotty and Jax!
Kate Callahan
Also, if you are looking for a way to help, we will be setting up a calendar to sign up for bringing meals soon (most likely after Scotty's next trip to Boston).
I am also looking into setting up an account to accept donations to help out with expenses (trips to Boston, parking, meals, gas, etc.) but in the meantime will be accepting cash donations through PayPal at my email address listed above. If you would like to send something, you can send to myself or directly to Jax and Scotty (please email me for the addresses).
Thanks everyone and Spread the Hope!
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