Great Holiday News

Hello everyone! I hope you had a great Thanksgiving and are enjoying the hustle and bustle of the holidays! Can you believe there is only 19 days until Christmas? Eek! :)

I wanted to write a quick note to fill you in on some GREAT news! The last time I wrote, we had just had a visit at Dana Farber with both the Urologist and Scotty's Oncologist, and were under the understanding that Scotty would be having major surgery to remove the "residual disease" and expected the surgery to take place between Thanksgiving and Christmas. Well, right before Thanksgiving, Scotty got a call from his Oncologist, Dr. Pomerantz, letting him know that he will not be having the surgery after all!

Scotty is such a unique case that it took a lot of discussion as to what was best for him, and eventually a meeting was set up, to solely discuss him and his situation. Dr. Pomerantz was away in St. Louis, but he took the time to Skype with the Urology and Oncology teams, and after much discussion, everyone agreed that because of how amazingly strong he is, how he handled the chemo and his perfect blood markers, that it is best to closely monitor him for the next year and hold off on the surgery. Dr. Pomerantz strongly feels that what is showing up in the scans is scar tissue, and he doesn't want to put Scott through major surgery when the chances of it being scar tissue is so high. This is wonderful news, although the next year will be a little nerve wracking, but we have faith that everything is working out the way it is supposed to. He was told that he will need to go back this month and get his tumor makers checked and rescanned, and he will have to do this four times over the next year. God-willing, everything will remain the same and we will have solid proof that he is in fact, CANCER FREE!

I know I've said it before, but I will say it again... you have all been AMAZING! Each and every card and message of support and love still hangs on our bedroom walls, and I don't think I'm ready to take them down just yet. We actually just discussed leaving them up for the next year, as a constant reminder of all the love surrounding us and what he has achieved so far. Sometimes thinking back over the last 6-7 months is overwhelming and I find myself in tears thinking about what he went through, and I know he has his moments too, but we are so grateful to be where we are today, blessed with the strength and love to get through anything. And the most amazing support system we could ask for! (All of you!)

Of course, even with the good news, there is still that uncomfortable feeling of not knowing what could happen in the next year, but we will take each day as it comes and be thankful for our health, and hope that Scott will be an inspiration for you all to do the same. We never know what is going to happen tomorrow, next month, next year... but all we can do is live for each moment like it's our last, and be grateful for all that we have. Please keep Scotty in your prayers and thoughts, that each test will show great results and that the worst is over. As the year goes on and we have any results/news, I will definitely keep you all updated through this blog.

We wish you all the happiest of holidays and the reminder that life is precious so live each moment to the fullest, and let love guide you all. If you ever need a reminder of this, get in touch with Scotty or myself... and we'll be there for you, just as you all have been there for us. We will never forget, or take for granted, the support and love that was bestowed upon us during the most challenging time of our lives. Thank you from the bottom of our hearts!

The Reality

I was certainly hoping to be sharing better news today, but instead I'll be sharing with you reality. Are we disappointed? Yes. Are we going to let this bring us down? Heck, No!

We spent the day at Dana Farber yesterday, going from appointment to appointment. The state-of-the-art building seems so familiar now and we can make our way to wherever we need to go with such ease. Of course it brings back many memories of the painful and scary days we spent, Scotty being so weak I'd have to push him around in a wheelchair, loading our hands up with anti-bacterial cleanser around every corner, fearing any germ we came in contact with. This time we act like our usual selves, sitting close, teasing each other and making each other laugh uncontrollably. It seems to make the unknown not so scary. I still look at others around us, brittle, weak, bald heads, and my heart hurts for them reminding me of when cancer was consuming Scotty, when the future was unknown, and I just want to tell them that everything will be ok... but will it? Scotty is a rare case. He is strong, he is determined and his body is so healthy, cancer didn't stand a chance. Even the worst poison they could possibly pump into his body (Chemo in the form of VIP) he was able to make it through with strength & grace. But everyone is different, every cancer is different, and unfortunately no one can tell them that everything is going to be ok. That is reality.

After getting his blood taken at 2:30 as planned, we headed up to the 11th floor: Dana-Farber's Yawkey Center for Cancer Care. Scott's appointment with Dr. Steele, the Urologist was set for 3, with a meeting with his Oncologist, Dr. Pomerantz, at 3:30. By 4, Dr. Steele finally showed up and sat down to review his scans. The hour sitting in the exam room waiting for him, seemed to take like 4 hours... and when he sat down to review Scotty's past, I felt a little frustrated that he showed up an hour late and hadn't already reviewed the case. I guess when you're one of the best Urologists in the world, that's how it goes. Two things came from his mouth that although I had heard before, keep ringing in my ears. "The difference in your scans from June to now is absolutely incredible. And after looking at the size of the original tumors, you are extremely lucky to be alive." How's that for reality? The scans he showed us were also very real. It is amazing that Scotty's body was able to operate, and at somewhat normal levels for so long, when tumors were taking over some of his vital organs. It also is a reminder of how long the cancer was in his body before the pain started affecting him, and finally went to the doctor. A lot of people would have died before even receiving chemo, due to the severity of their tumors, and many more are not able to make it through the side effects of chemo.

After reviewing the scans for quite some time, Dr. Steele's told us his recommendation is for Scotty to have Post Chemotherapy Retroperitoneal Lymph Node Dissection. This procedure is common with those who have Testicular Cancer and is a major surgery. Because cancer was badly staged in his body and the size of the tumors were so large, they shrunk significantly, but not enough and because they don't know what's left, the best option for Scotty is to have them removed. He has a large one in his liver that sits on the major vein, as well an enlarged lymph node close to his aorta and if they continue to grow, Scotty could be in some serious danger. Dr. Steele broke it down like this: he believes there is a 20% chance that the tumors could still contain cancer, yet not enough to show up in tumor markers in the blood. There is a 40% chance that they could contain teratoma, and 40% chance that it's scar tissue. Taratoma would ensure that the large dangerously sitting tumors will grow eventually making for a very dangerous situation. Dr. Steele said he was going to discuss with Dr. Pomerantz but he'd want to do the surgery in December.

Next up was Dr. Pomerantz and Scott and I were pretty deflated at that point. He was very optimistic saying he wanted to share his thoughts about the situation. He believes the chances of it being scar tissue due to Scotty's reaction to the chemo topped with his "pristine" blood markers, is over 50% but still wants to discuss pros/cons with Dr. Steele. He is definitely leaning towards the surgery for the reason that the "residual disease" could be potentially dangerous. We also learned Scotty will be closely monitored for years to come and that although there are no signs, his chances of getting cancer again in his 50-60s is much higher due to the chemo he had to endure. Scotty was informed that he is extremely healthy, his scans show he has no vascular fat, but it is essential to change his eating habits. Dr. Steele had said that just one salad a day significantly reduces the chances of cancer. Although he doesn't eat "bad," there is so much room for improvement, so I'm taking it on as my challenge to find ways to incorporate new healthy foods into his diet. I just don't think I'll ever live to see the day where I will find Scotty making himself a salad for lunch on his own. :)

So basically, Scotty's situation is very rare and the best situation is not 100% clear. Both doctors want to discuss and make sure they agree on every level. The surgery will most likely take place in December, between Thanksgiving and Christmas. The surgery will take 4-6 hours, he'll be in the hospital for about a week, and it will be a 4-6 week recovery period as he will have had his whole stomach cut open. There is the chance that because of where some of the tumors are that they will not be able to get it all, which Dr. Pomerantz wants to discuss to make sure it's even worth going in then. But, even if they were able to get most of it, and deemed it to be scar tissue, then it would be a huge relief. There is always the option of waiting and constantly testing to make sure that cancer is not growing, or even taratoma, but that is like waiting for a ticking time bomb to go off and a higher chance of having to go through chemotherapy again. Scotty feels better than he has in 4 years, and although would prefer not having the surgery, he wants to be able to go on with his life, not worrying about what might or might not be happening in his body because of the tumors. The Doctors were going to discuss and be in touch with Scotty on Tuesday, and the three of them are going to come up with a game plan.

We wish we had better news, but this is what reality has given us, so we're going to 'chin up' and take it as it comes. Scotty was told that this surgery is nothing like what he went through before... so as long as the actual surgery goes well, he'll still be feeling as good as he does now. There are a few possible complications, like bleeding due to removing tumors that are sitting on other structures, and reducing any chances we might have now of having children, but he's going to be in the best possible hands when it comes to this surgery and not many hospitals or Urologists even perform it. Dr. Steele works closely with the best Vascular Surgeon he knows, and together they make an amazing team. Knowing that surely helps.

So thank you all who have been thinking of us, praying for us, and surrounding us in love. You all mean the world to us and help keep us strong in these times of struggle and uncertainty. Please continue to pray for Super Scotty and that whatever happens will be a piece of cake for him and so he can FINALLY move on with his life! I can't say it enough, but he is an amazing guy and truly deserves the best. I was told recently that "Reality isn't unfair. It just is." Every situation is made to be an opportunity to grow and it is up to us to be aware and look for that lesson. Scotty will be an even better person after going through this and instead of wallowing in the negativity of the situation, we will focus gratefully on the lessons that life is offering both of us.

I will update you with the game plan once that is finalized this week. In the meantime, be well, be blessed, and much love...

Big Day THIS Friday

Hello everyone! I hope this update finds you warm and well. For those of you on the East Coast, the last few days have been pretty trying due to Saturday's "Snowtober" storm, and I hope you are all faring well. We finally got our power back last night and I am so grateful!

I wanted to reach out and let you all know that Scotty's appointment that was scheduled for next Friday, was moved to this Friday, as it was the only time we could meet with both his Oncologist and the Urologist together. Scotty will be having his tumor markers reviewed again and we will be finding out if he will need to have surgery to remove what's left of the shrunken tumors, or if they will deem them to be scar tissue and leave everything be. At this point this will be left up to the Urologist, Dr. Steele, who may or may not request more scans to be done. Dr. Pomerantz told us that he will not be needing to see any more scans and that he feels that it is just scar tissue... and we hope that Dr. Steele will feel the same way. There is still the possibility that he will want to take out a piece of "tumor" to analyze it... and I'm hoping not, as Scotty has been through enough!

I know that some of you have a lot on your minds right now as you clean up from the aftermath of Saturday's storm... some of you may not even have power yet... but I ask that you take a minute to say a prayer for Scotty, think some positive thoughts of pure health, and believe with me that Friday will be a day of great news and celebration! Your support has and always will mean the world to us... I know I would have never been as strong as I was if I didn't know I had a lot of awesome people standing behind us. We think about this daily and often have conversations about how truly lucky we are to have so many amazing people in our lives, thank you so very much for showing us that!

Have a fantastic week everyone, I'm wishing you all peace and warmth, and I look forward to relaying GREAT news to you on Friday/Saturday.

Much love, Jax

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up or fight like hell." Lance Armstrong

Cancer Free!

Today will be a day that we will never forget. Today we found out that Scotty is cancer free!

We spent the day at Dana Farber as Scotty got blood tests, cat scans and we sat down with his Oncologist, Dr. Pomerantz. It was a long day of waiting between appointments, trying to keep our minds busy and staying positive. It seemed like forever when they finally called out "Scott T." and the walk back into the exam room was little intimidating. Dr. P came in and smiled. He announced that Scotty's blood markers came back absolutely NORMAL!

The scans showed the lungs were completely free of tumors. Amazing! Unfortunately because the tumors were so far progressed when Scotty came into treatment, the tumors in his lymph nodes and abdomen shrunk but not completely, so there is still something showing there on the scans. The blood markers show that it is probably just scar tissue, and the only way to truly know is to go in and take one out to look at it (which at this time Dr. P does NOT think is necessary). Dr. P is going to discuss with the Urology team the pros and cons of taking them out and Scotty has to go back in 5-6 weeks to see the Urologist and Dr. P to discuss what the game plan is. It was explained that there are three possibilities:

1. The most probable: Open him up, see that it's just scar tissue and sew him back up forever.
2. The tumors could still hold viable cancer in the lymph nodes and removing them would be therapeutic b/c the nodes are the most common place for cancer to go so it could fully cure him. Dr. P doesn't think it's likely. He says it only happens 5% of the time.
3. More common: Some tumors tend to carry Teratoma that travels with cancer and does not respond to chemo. It is NOT cancer but continues to grow in size taking up prime real estate.
   

Dr. Pomerantz kept saying that he bets it's just scar tissue and that after seeing how Scotty's body reacted to everything it wouldn't surprise him. He told us that he could not have asked for a better outcome and that the results today were as good as we could have hoped for and we just need to figure out how we're going to move forward.

One interesting fact we learned today is that one of Scotty's kidneys doesn't work. Although it doesn't work, he still has perfect kidney function. The scan did show that his kidney was perking up a bit, but the tube that connects it to the liver was beaten up pretty bad from the tumor and may never heal. But hey... we only need one to live, so as long as he takes good care of his good one... he's golden! :)

Scott is such an amazingly strong man and I am so proud of what he has overcome. Dr. Pomerantz explained that Scotty's condition was very rare due to the large aggressive disease burden already on him when he started treatment and what he went through is worse than what they put anyone through. He said that Scott was very strong and brave and that if ever goes through something like this, he hopes he's as strong as Scott. I know that no one more than him wishes that today was it and we don't have to worry about surgery down the road, but he is a superhero and will do what he has to do. He knows he has support from the greatest family and friends a guy could ask for and he knows that what he may be up against is nothing compared to what he WAS up against... and WON! Neither of us could have made it this far without all of your love and support and our lives have been completely touched by many of you. This experience will never be looked at with anything but positive memories of the numerous ways our friends and family reached out to us, holding our hands along the way. We will always be reminded of faith and hope and the belief that love conquers all. We will take every lesson that was taught and be grateful for it. As we are grateful for all of you!

I will keep you posted as soon as we meet with the doctors. His appointment is scheduled for 5 weeks out but it could change to either 4 or 6. Please keep the prayers going that what's to come will be easy and painless and that Scotty can fully have his life back, once and for all!

Much love and gratitude,
Jax & Super Scotty

No More Chemo!

I knew I hadn't updated in a while.... but I had no idea it was THIS long and I am SO incredibly sorry! Time seems to be moving so fast for me lately and I'm having a hard time grasping the fact that summer and September are basically over. It was a tough summer as Scott spent most of it in the hospital and when not in the hospital he spent it at home in bed recovering. Looking back at the last post, it was when Scotty was going in for his fourth and final treatment of chemo and got the awesome video message from Lance Armstrong. It was a tough round, he felt crappier earlier than in the rounds before and I think he just felt poisoned by that point. He took some time recovering, but a little over a week later we were able to head up to Mike & Sally's house in Maine for a night and then to Dave & Nancy's in Maine for a long Labor Day Weekend spent with the family. I know that Scotty enjoyed himself so much being able to be free with his friends and family... knowing that was it, he did it!

While we were away in Maine, we noticed weird red bumps all over Scott's legs. He also had gotten some cuts on one of his hands and it swelled up pretty big. He contacted the doctor with pictures letting him know what was going on and told Scott that once we got home a couple days later to get a tetanus shot. Instead, Dr. Pomerantz called Scott telling him he had an appointment with a Dr. Nora something at the Dana Farber offices a few days later at a set time. We got there to find out that she was Dr. Pomerantz's wife! Way cool! Anyway, she did a biopsy on two spots on his legs leaving two holes in his thighs and did a large series of blood tests. We got into our car to head home, sat in tons of traffic to get a call telling him to come back immediately... after more traffic trying to head back to the hospital, we found that Scott was going to need blood transfusions and that he was going to be admitted over night. That was surprising and upsetting news but what are you going to do? So I drove home leaving him in Boston with nothing but the clothes he went in wearing. They gave him 3 bags of blood and a bag of platelets and discharged him the next day, and told him that is why he had the red bumps all over his legs.

After that he felt GREAT! He thought he has felt fine before the transfusions but after what he calls his "Oil Change" he felt awesome! Scott, myself and the dogs headed back up to Maine while Dave and Nancy were away and got to enjoy a quiet little getaway at their place on the lake. For those of you know Tank and Jellybean... they are the happiest when they are swimming and boating so it made us all happy to be there together. And I guess you could also say, a business was born that weekend. (more below on this topic)

Since he has started to feel so much better, he has been chomping at the bit to get back to work. He had been getting picked up for half days one day a week when he was feeling up to it, but since he got his truck back on the road, he started going in a little bit everyday. Two weekends ago he had his first show (in four months) and he was so incredibly happy. I tagged along with him to make sure was OK and to help him if he needed it. He was definitely exhausted by the end of the day but he felt so good. This past weekend he had a 2 day festival in Philly that was supposed to be outdoors on 3 stages, but because of the weather, last minute, it was moved into an indoor arena with one stage. He worked hard and operated on barely any sleep and although I was concerned and constantly asking him if he was drinking enough water and making sure he was eating.... you could tell he was where he belonged. He seems to be doing really well and his body seems to be keeping up... I just hope that Scott will admit if it's ever too much because we all know how proud he is. It's really hard to know where he stands right now in this journey, but I do know based on the blood marker tests, he could/should be in remission.

A week from Friday (October 7th), we will be heading into Boston for a visit with Dr. Pomerantz. Scott will have his tumor scans done and from there the Dr. can come up with a game plan for moving forward. I want you all to envision, think positively about, and pray that all of the tumors have disappeared! We know that they turn to scar tissue and the Dr. needs to ensure that if he sees anything of size, that it is in fact a tumor and not scar tissue and that doesn't operate if it's not necessary. The Dr. will do a study and give his professional point of view and from there we will go. I promise to give you an update immediately following the news, but I want you all to make sure you're doing your part and surrounding Scotty in love, prayers, thoughts and vibes.

Something else I wanted to share with you all because I believe the opportunity has come out of the experiences that Scott and I have been through lately, is that an idea that had been planted in Scotty's head was able to be brought to life. Scotty and I have partnered up and started the company Figure It Out Communications, operating as FIO Comm. It is a 2-way radio rental business for tours and events. It's off to a great start already booking a music festival and three small tours. I have been working on the business side of things as well as designing our logo, collateral and learning how to design our website! Scott is obviously using his contacts and his his official title is Owner/Tour Accounts. Make sure you check out and 'like' our FIO Comm Facebook Page. Our website is www.fiocomm.com and will hopefully be up and running soon. We are very excited about this and hope that one day it will grow to be something
bigger, but we are enjoying the process as we go!

Again thank you all for everything you have done for us during this trying period of our lives. Hopefully now that things are settling down a bit, I can get those thank you cards out! In the meantime, enjoy the Super Scotty logo designed in collaboration by Michael Martel and myself. This represents our guy Scott and the amazingly fearless, strong, stubborn, and loving guy he is.
He is certainly my super hero!

Lastly, this Sunday 10/2 is LIVESTRONG Day and I beg that you all wear yellow to support Scotty, Lance Armstrong and everyone else in this world who has or is currently battling cancer. You can pledge that you'll do it by clicking here and just typing your name and your location and be added to the growing number of supporters!

Peace, Love, Happiness:
Jax (& Super Scotty)

Lance Armstrong Supports Scotty

What an awesome 24 hours! Last night on our way in to the hospital, Scotty got an email from Lance Armstrong! Well really it was an email from someone in Lance's camp but it contained a personalized video message made for Scotty! Sally Martell, a close friend of ours, reached out to her contacts and was able to make this happen for him. It was such an emotional moment and it made it all the more real that this is it: Round 4. And even Lance Armstrong himself, supports him. Scotty sent it to Dr. Pomerantz and he and the other doctors thought it was really cool! I love how happy it makes Scotty, it must make him feel so good... so special... and supported. :)

This morning I finally got to meet the infamous Dr. Pomerantz. Over the past few months I always missed him since I would get there at night and leave in the late morning, and he always stopped by in the afternoons. His first words to us were "Did you hear the good news?" Scotty asked 'what news'? "Your tumor markers are down to 70. Based on your record of numbers, this round would put you into remission." Of course we have to wait a few weeks one he's done on Wednesday to get the scans, and then there's the talk of the tumor vs. scar tissue... but I'm going to visualize that tumors will be obviously diminished on their own so there will be nothing to worry about surgically. Care to join me? ;)

I left the hospital today and Scotty is in great spirits. Yesterday was a tough day for him because he was having such a great stretch of time before he had to come back in that it was like hitting the wall again. I just heard from him and he's starting to feel crappy as the finishes up his second day. But I keep reminding him that he's almost done, that he's got this one, and that he's a Super Hero! (My hero!)

Birthday Celebrations!

Hey everyone!

It's been ten days since our last update and I have to say, even after
three rounds of hardcore chemotherapy, this was the best "recovery
time" yet. The chemo definitely takes a bigger toll on Scotty each
round and the side effects (especially nausea) have also gotten worse,
but it is amazing how strong Scotty is and how quickly he has been
recovering after his treatments. Although he experienced a lot of
nausea and vomiting for the first 4 days he was home, we were able to
spend the last week traveling and relaxing while celebrating both of
our birthdays and we had an awesome week! We have to thank Matthew
Shea and Atlas PyroVision Productions for hooking us up and making our
getaway at the Mountain View Grand incredible. With their generosity
we were able to stay two nights and enjoy a carriage ride, massages
and great food. Your generosity is so appreciated. We also want to
thank Grandma Joyce and Uncle Stevie for staying with the furkids so
we could enjoy our time away alone, we so needed it!

After our MVG getaway, we headed up north to Scotty's Dad and Nancy's
house in Maine and had an awesome long weekend visit with them. The
dogs had a blast swimming and it was a wonderfully relaxing weekend
with great company. Scotty handled the non-stop driving really well
and he got to wake up on his birthday there, which was really nice.
Yesterday Scotty turned 34 and something in my gut tells me that this
is going to be his best year yet. We had a great dinner last night at
one of our favorite restaurants and all and all he had a great
birthday. Scotty is feeling so good... and so ready to get back to
work, he went in for the day today to plan out his new office so it
will all be ready for when he's back at it. When that will be, we're
not totally sure yet... but if he could have it his way, it would be
tomorrow. :)

That leads to me to where he is with his treatment. On Friday, he will be
admitted back to Brigham & Women's/Dana Farber in Boston for his 4th
Round of chemo. It will start Saturday and run through Wednesday, and
if all goes well, he will be discharged Wednesday night. This should
be, God-willing, his last round of chemotherapy. His Dr. wants to
wait a little longer after this round (probably about 3 weeks) before
he gets his scans done to give it time to do it's thing as the next
step is a very important one. The scans will show the size of the
tumors and as they shrink, they turn to scar tissue. The Dr. needs to
determine if there are any tumors that will need to be removed, and
because the tumors reduce to scar tissue, they have to be very careful
and certain that what shows up on the scan is in fact a tumor and not
scar tissue so they're not operating for no reason. If you could pray
and think positive thoughts about this, we would so appreciate it. Of
course he's prepared to go through whatever life throws at him, but
the poor guy has been through enough already and he's got the scars to
prove it.

I have to say that I am completely in awe by the strength that one
person can have and I hope that Scotty is an inspiration to all of
you. He was in terrible condition when we found out about his badly
progressed cancer and I hate to say it, but might not have made it if
it weren't for the chemotherapy. No one ever wants to go through
something like this, flushing his body with poison, but sometimes in
life you don't have much of a choice in what you have to endure, but
you have the choice on your attitude and how you handle the crap
thrown at you. Never once did "why me?" come out of his mouth
although I'm sure it went through his mind numerous times. We all
wonder why bad things happen to good people and it doesn't make any
sense, but I do know that in retrospect this experience will be a gift
for Scotty in ways I can not explain, and some are on a personal level
that are only for him to understand. My life is completely changing
(for the better) and yeah, we've had to continue to go through
really hard stuff, but I know that when it's all said and done, our
lives are going to be even better. We all knew in our hearts that
Scotty will be able to beat this and I wasn't kidding when I came up
with the name Super Scotty. He has truly proven to be like a super
hero with how he has been battling and whipping cancer's butt! It goes to
show what the power of a positive attitude, love, and surrounding
yourself with amazing friends & family can do, don't ever forget it!

We owe so many of you thank-yous and shout-outs for all that you have
done for us already through this journey. There are many of you that
have reached out in emails and messages and I haven't been able to get
back to you yet and I'm so sorry. Every single message, email,
donation, favor, card, gift and visit has touched us in ways beyond
words, and as things hopefully get easier and less emotional, I
promise you will hear from me. This journey has not only affected
Scotty, but it has certainly changed my life pretty dramatically and
although exciting, I have a lot of soul searching to do myself.

I realize each time I intend to write a quick update, I end up with a
book, but I can't help myself. Reaching out to all of you and keeping
his close friends and family in step with him through all of this is
the least I can do for such a wonderful man! I hope you enjoy reading
it as much as I enjoy writing it. :)

Peace and happiness to you all. Xx

Jax

P.S. I forgot to mention that Scotty really doesn't want visitors at
the hospital because the chemo been making him feel so crappy and it's
tough for him to visit while feeling that way. Once he's home and
over the "hump" he'll be trying to get back to "normal" as much as he
can, especially if we get great news regarding his post-treatment
scans, so you can visit all you want at that point! :)

Seeing Results!

Hey guys,

I hope this message finds you all doing well.  It's been a while and Super Scotty is home from the hospital again, so I wanted to update you on his progress!

Scotty completed Round 3 on Wednesday and he was discharged that night. It was another rough drive home but with how he had been feeling during most of his treatment, we kind of expected it.  He handled the treatment beautifully (as always) but you can tell that each round is getting harder and harder for him. He is currently still feeling pretty crappy and has been doing a fair share of sleeping.  He has been eating as much as he can and he's doing well with it considering.  During his chemo journey, it's really kind of funny how he has been turing to Mexican food pretty consistently, but hey, whatever works!  He just sent me to the store for tortilla shells, salsa and cheese!  He has slowly been gaining some weight and right now that's the focus, to have him keep putting on the weight so he is strong enough for the chemo. We are not exactly sure what's to come next but we do believe he will go through another round in 2 weeks. The reason that we are unsure is that Dr. Pomerantz is on vacation to be returning on Monday.

Upon admitting Scotty had his scans done and his markers checked again.  This is super exciting news that I'm SO happy to share.  The shrinkage of tumors is comparable to a softball shrinking to a golfball (we're not sure if they were actually that big, Scotty said the doctor who was describing it was a little weird), and that was before this past round of chemo, which means it's working!!!  In the last update I told you that his tumor markers were both down 90% (to 4 and 9500) and this time they showed another dramatic reduction to 2 and 653!!!  It was some other doctors that were covering who updated us with the results so we have not yet been able to discuss it with Dr. Pomerantz to see what the plan is.  As soon as we know, we will pass it on. :)

As this journey continues, we both ask that you keep us both in your thoughts and prayers.  Some days are harder than others and we're both experiencing the emotional ups and downs.  One thing I ask is that you keep showing Scotty the love as he needs your support now more than ever.  I bet cabin fever isn't even strong enough to describe how he's feeling right now and it pains my heart to see him confined to his house, his room... his bed!  We went this morning to the Londonderry Dana Farber to get his "immunity" shot so the next couple days could be tough (the first time it really affected him the last time wasn't so bad) and he may or may not want visitors so just check in first... but after that I'm sure he'll be expecting to see some of your faces!  As long as he's feeling up for it on Wednesday, we're heading to the Mountain View Grand for a night to celebrate our birthdays (all his idea!!) Which reminds me of something else.... his birthday is coming up on the 15th and we're very happy that he won't be spending it in the hospital!  Got to be grateful for the good stuff! :)

I guess that's really it for now... if you have any questions, please reach out and if you want to come see Scotty, please do!  A lot of people have mentioned that they didn't want to overwhelm him... it hasn't happened yet (besides in the small confines of the hospital) so please if you want to visit, just reach out!  Again, please just make sure that if you do visit, you are not sick or able to pass anything on to him, I know I sound like a broken record, but I can't stress how important this is!!!

We wouldn't be getting through this if it weren't for your continued support and love, so thank you!

LOVE, LOVE, LOVE, to you all!

Jax (& Super Scotty)

P.S. we still have Super Scotty wristbands so if you want one or two, see the blog about the wristbands and supporting Super Scotty!

http://superscottytkachuk.blogspot.com/

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

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!

http://signon.livestrong.org/

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

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)

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

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

Email from June 27, 2011

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

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

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

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!