A Kidney Miracle!

Do you believe in miracles? You should, because they absolutely DO exist! We excitedly and humbly announce that Super Scotty found his miracle kidney!

Everything we know right now is from Scott’s AMAZING donor (and dear friend) so until we get the verbal confirmation from Brigham & Women’s we’re going to wait to give out details, but we wanted to share the amazing news with all of you who have supported us throughout this journey so far.

I plan on documenting the whole process and sharing it with you all. Stay positive, stay humble, and always remember that miracles do exist! 💛

Big Update

Hey everyone! It’s been a long time since we updated last, but we really didn’t have anything solid to announce… until now… and even still we are afraid of jinxing anything, so we will keep this quick & vague…

Jimmy Fund Radio-Telethon at Fenway Park (August 2013)

Tonight a dear friend of Scott’s will be flying into Boston to be at Brigham & Women’s tomorrow for orientation & his final tests to see if he is a kidney match for Scott. We have not made it this far yet (my amazing friend who found out she has a health issue found out right before this final step)… so it is VERY exciting! We’re trying to stay realistic and grounded though, as we have experienced other “speed bumps” along the journey and understand that it will all work out the way it needs to…

Another big-hearted friend told me she was the closest match via markers, but her kidney is too small to donate to Scott (she is itty-bitty). So being inspired by Super Scotty's story, she said she will donate to a child if she can’t donate to an adult. How incredible is that?!? 

Please pray, send positive vibes, and high-vibe energy out tomorrow that he will be a match. We do not know how many matching markers he has, but they obviously feel he would make a good candidate to have him come out for the final tests. We are also not sure when we’ll know (everything we do know is only what the potential donors tell us) but we hope the next time we write an update to you all… it’s going to be amazing news!

Lastly, there are so many of you who have sent messages to both my personal and A Kidney For Scott FB pages checking in or sending support and I owe a lot of you responses right now… but I want you to know that we appreciate each and every one of you and I will be in touch as soon as I can!

We are so very thankful for your love & support throughout this journey!

We Need Your Help!

Hello everyone! We are rallying our troops once again as we experienced a setback in the search for a kidney for Scott. Here is the latest:

An amazing friend of mine was the closest match out of everyone who came forward (3 out of 5 markers) and she was going through all the testing when she got some scary news that she might have kidney issues that she was unaware of, and is now going through testing of her own. Through her own selflessness, she may have saved her own life. It is a humbling feeling to know that someone cares enough that they would not only pursue donating their kidney to Scott (whom she's never met), but being upon learning the news of her own potential issues is more upset that she can't help Scott than what she might be up against herself.
Please pray for her, and send her healing thoughts and love... she is one of the most beautiful, selfless people I know and she deserves nothing but the best.

Scott reached out to the donor department and asked what happens now and they said they are moving forward with testing with others who qualify. They also suggested that we continue putting a plea out for anyone who might be interested in seeing if they are a match for Scott.

While this was all unfolding, our beloved 14-year-old dog, Tank, was diagnosed with Lymphoma. We have started chemotherapy and so far he is doing great. The good thing is that he's got a 90% chance of a 12-18 month remission with 6 months of treatment, and since he's a healthy guy otherwise, everyone is really optimistic about everything.

Life has been tough for sure, but we're tougher and we know that with all the love and support around us, we'll get through all of this, just like when Scott kicked cancer's ass. We do beg of you to share this as much as you can. The power of social media is incredible and all we need is that one person who matches to save Scott's life!

Thanks for reading and for being a part of our journey! Much LOVE!


Here's all the important info:

COULD YOU BE A MATCH?

Scott is blood type A+ and can be matched with types A & O (+ & -). Are you type O or A and want to see if your kidney is a match for Scott?

Here is a link to the pre-screening that gets the whole process started: https://bwh.donorscreen.org/register/donate-kidney

You will need is DOB which is 8/15/77


SHARE

Share this blog, share the Facebook page... please help us get it in front of more eyes because there is someone out there that has the perfect kidney for Scott & the heart to donate it to him.

https://www.facebook.com/AKidneyForScott/


DONATE

If it speaks to your heart, click here to support A Kidney For Scott Support Fund (organized by Paul Fitzgerald) to help offset the mounting costs: http://bit.ly/2RKyydt

Gratitude on World Kidney Day

Super Scotty last year in Punta Cana

I posted this on the A Kidney For Scott page but FB won't let me share with my original message included, so I'm going to post here too, in hopes of reaching more of you:

It's World Kidney Day and although we don't have a transplant day to post about (yet)... we do want to take a moment to share our incredible gratitude to all that stepped up and applied to be a donor for Scotty. We were told that they have never seen so many people come forward for one person before and they literally had to sort through A LOT of applications. Some of you we know who you are, some we don't (they can not tell us).... but one thing is for certain, we feel the love. We are surrounded by some incredible people in this life, and we are more grateful and humbled that any post on social media could explain. There's a lot of testing and narrowing down still to be done, but we are optimistic & hopeful that a miracle is in the making.

Thank you. Thank you to everyone who has reached out. Thank you to those who stepped up to see if they were a match. Thank you to those who donated to help offset some of the rising costs. Thank you to those who are praying for us, praying for a miracle. Thanks to those who check in to see how we're holding up. We see you. We thank you. We love you! 💛 Jax & Scott

______________________________________________________________________________

COULD YOU BE A MATCH?

Scott is blood type A+ and can be matched with types A & O (+ & -). Are you type O or A and want to see if your kidney is a match for Scott?

Here is a link to the pre-screening that gets the whole process started: https://bwh.donorscreen.org/register/donate-kidney

You will need is DOB which is 8/15/77


SHARE

Share this blog, share the Facebook page... please help us get it in front of more eyes because there is someone out there that has the perfect kidney for Scott & the heart to donate it to him.

https://www.facebook.com/AKidneyForScott/


DONATE

If it speaks to your heart, click here to support A Kidney For Scott Support Fund (organized by Paul Fitzgerald) to help offset the mounting costs: http://bit.ly/2RKyydt

A Kidney For Scott

Costa Rica, November 2015

I can't believe the last time I wrote here was in 2012! So much has happened... we got married in Costa Rica, bought a new house, and together now have two amazing nephews, and an adorable niece!

Scott's kidney function also took a nose dive. And just recently was diagnosed with end-stage renal failure. We knew one day it might happen, but it certainly took us by suprise at how fast everything started going downhill witht his kidney function.

I'm going to recap everything that I already posted on the A Kidney for Scott Facebook page and will continue to update here moving forward.



BRIGHAM & WOMENS TRANSPLANT ORIENTATION DAY

On Monday, January 14th, we attended an all-day orientation with the Brigham and Women's Hospital Transplant Center. It was long, emotional, and very educational. We met with the entire team from the surgeon, the nephrologist, social worker, financial planner, pharmacist, nutritionist, and our caseworker who will oversee everything. As completely overwhelming the experience was, everyone was so kind, helpful and caring and we feel confident that Scott will be in the best hands.

Scott completed all his tests (yesterday & today) and his case will be presented in front of the Transplant team on Friday (1/18) to be approved to be added to the transplant list. The problem is once on the list, it can take 5+ years to get a kidney.


His kidney function is very low and they feel he is currently living off of reserves as to why he’s doing so well health-wise, but if he doesn’t get a transplant lined up, there is a strong chance he will need to go on dialysis. While dialysis can save lives, it is extremely unpleasant and actually decreases life expectancy compared to going straight to a transplant (which all his doctors are rooting for).


LIVING DONOR

The best scenario is to find a living door. Someone who is alive who is willing to donate a kidney. This will give Scott the best chance at life. There are lots of other factors that go into this, such as the health of the donor, etc, but all that gets sorted through the screening process. He needs someone with Blood Types A or O. They can have tests done at their own doctor and if they pass the screening, they would eventually go into Brigham & Women’s for a work up. They are really pushing this as the sooner we can get potential donors screening, Scott gets closer to surgery eliminating poor health and the need to go on dialysis. Right now he feels pretty good… and I think the doctors are impressed by this… but knowing his kidney function is as bad as it is, we are racing against time.



THE SURGERY

Once he finds a kidney, Scott’s surgery will be a bit more complex. He’ll be in the hospital for 7-10 days and there will be A LOT of various medicines he will be given, some to be weaned off of before discharge. Unfortunately, he will be on two immune-suppressant drugs for the rest of his life. These will ensure his body will not fight off the kidney. These meds do have a very slight change in causing cancer: both skin cancer and lymphoma. The chances are slight… but it is a reality. Once he is discharged he will need to go to clinic 2x a week for the next 3 months or so and then things will start spacing out. For the first 3 weeks, I need to be with 24/7 in case of emergency. I will need to take him to all of these appointments. He will need to be constantly tested to make sure his body isn’t refusing the kidney and sometimes some meds need to be adjusted if they feel something funky is going on. For the 1st year there will be a lot of monitoring but after 4 weeks he can typically go right back to his normal lifestyle.


The great thing with a living donor kidney is the moment they add it to his body, it will kick in. They have to lower his immune system dramatically and this allows his body to not attack the kidney. Over time they can add back some of his immunity - but never all of it or it will reject the kidney. The pharmacist was pretty amazing in explaining all the drugs, the side effects, the stats… it’s a lot, especially for us who try to live a holistic lifestyle, but life is not always in our control and we are submitting to what is best for Scott. One of the weird things we learned, is that they don’t actually remove his kidneys… they add the 3rd one in so he’ll have 3 kidneys in his body. Kind of funny and strange. The other great thing with a living donor is the surgery can be scheduled around everyone’s schedule… it’s not an emergency, whereas if he was on the list and he got a call at 3am that his name is up on the list and he needs to get to the hospital stat (though again…. that is 5+ years out so really scary).


LIVING DONOR MYTHS

Some important things for donors to know…. Scott’s insurance covers everything. You will spend a few days in the hospital for the surgery, with minimal pain, and in about a week you go back to life as you know it. Nothing will change at all. We were born with two kidneys but only need one to live a full healthy life. And our bodies are so amazing that once a kidney is removed, the remaining kidney grows a little in compensation. They actually test both kidneys and leave the stronger one in and donate the other. Being a donor does not change your quality of life, AT ALL. there’s a lot of myths out there about that, and I just want to clear the air. You will live your life just as if you had two kidneys.

Some info on living donors: https://www.kidney.org/transplantation/livingdonors 

DONOR SWAP

The other thing there is which is pretty new and actually pretty awesome is a swap program. If you have a blood type that doesn’t match his, you can donate your kidney to the bank, and get the kidney he needs in return from the bank. This is a great option (and it saves two people), but unfortunately, it takes about a year… so while it’s an option, the living donor is what is going to give him the healthiest, strongest chance at a long healthy life. There is also the chance that a donated kidney may only last a certain amount of time. Some last 15 years, some less… and one man had a kidney transplant 40 years ago and is doing awesome. So there’s always the chance that he may have a 2nd transplant at some point in his life. But I refuse to look that far down the road right now… we all know Scott is amazingly strong and healthy and he’s proven to us that he’s a superhero. All we need to do is find him a living donor, get his surgery scheduled… and Scott will be back better than ever!


COULD YOU BE A MATCH?

Scott is blood type A+ and can be matched with types A & O (+ & -). Are you type O or A and want to see if your kidney is a match for Scott?

Here is a link to the pre-screening that gets the whole process started: https://bwh.donorscreen.org/register/donate-kidney

You will need is DOB which is 8/15/77.

I know this is a lot to digest, and a lot to ask… but Scott’s life depends on it… and we know Scott would do absolutely anything for the people that he loves, no questions asked.

SHARE

Please share! Please help us get this info in front of more eyes because there is someone out there that has the perfect kidney for Scott & the heart to donate it to him.

https://www.facebook.com/AKidneyForScott/


DONATE

Click here to support A Kidney For Scott Support Fund (organized by Paul Fitzgerald) to help offset the mounting costs: http://bit.ly/2RKyydt


With love & gratitude,
Jax

One Year Ago...

I can't believe this will be my first time posting in 2012... gosh, time has flown.

It has been an emotional last few days for Scotty and myself. Monday marked the anniversary of the day he first went to the doctor, and today marks the anniversary of the day he was diagnosed with staged Testicular Cancer... sending us off on a journey of the scariest, most live-changing months of our lives.

I thought it would be a perfect day to let you know how great Super Scotty is doing! The last time I wrote, the doctors, after much collaboration, decided that they would not operate to remove all the "residual disease," but instead monitor him closely on the belief that it was scar tissue. At first he had to go monthly to get his blood checked, with every other month getting scanned, to see if there was any change. After the first few appointments, it was evident that the doctors had made the right decision. Not only were his blood markers coming back perfect (and a little better each time) his "residual disease" seemed to be shrinking! We did have a scare in February when the scan came up blurry in an area near his damaged kidney. His oncologist told us there was a chance it was teratoma and if so, that he would have to have it removed. He wanted him to come back on Monday for an MRI. After holding our breath for a few hours after his MRI appointment, Scotty got the news that everything was fine. Since then the doctor has spread out his appointments due to the great results, and he now goes every other month for blood work, and every other appointment he gets scanned. He's due to go in for both on Friday, July 13th. We're not really superstitious, but I think he will be moving it up or back a week... just to be safe....

I hope you are all enjoying spring and that you are happy and healthy.  As we've learned this past year, life is short so enjoy every moment and be grateful for everything. We are grateful... we are grateful for health, for happiness, and that you are all a part of our lives.

Peace & love,
Super Scotty & Jax


Please Note: The Jimmy Fund and Dana Farber have a promotion going on that if you donate to help fight cancer, they will match your donation. I know a lot of you have been affected by cancer, so here is your chance to fight back. Click here for the website!

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!