Thursday, March 14, 2019

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

Tuesday, January 22, 2019

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.






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

Thursday, June 14, 2012

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!

Tuesday, December 6, 2011

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!

Saturday, November 5, 2011

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...

Tuesday, November 1, 2011

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

Friday, October 7, 2011

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