It’s a beautiful day for a stem cell transplant! The Palkos were up and at em this morning battling for the hotel bathroom to shower and get ready for our 7:30 am appointment. We arrived at Mass General to be greeted by a lot of young faces who all knew mom and dad. You could see the excitement in their eyes as they embraced dad and discussed the surgery. We were escorted upstairs where we had to say goodbye before he left to get dressed. Hugs and tears were prevalent as we separated.

He’s currently getting dressed and prepped and will go in for surgery any minute now. The procedure will take about 6-7 hours, with about 2+ hours of recovery before we can see him.  We should be getting updates every now and then, and I’ll do my best to keep the blog as up to date as possible!

It’s a very exciting day and you can feel the positive energy throughout the building. Keep sending the prayers and the vibes, we can feel them!

We are off to Boston tomorrow to meet our family before walking over to Massachusetts General Hospital together on Thursday morning, April 10,  for Kreg’s 7 to 8 million stem cell transplant!

Thank you for all the well wishes and support, the BIG love and the prayers. We feel them all. Remember, this is a big experiment- but we have such encouragement that incredible things will come of it.

When the Palkos head out on a trek of some sort, Kreg always, always!!! pushes us to follow him to that perfect spot;  that spot that no human has ever laid eye on, that he knows will just present itself……for that yummy, prized backpack lunch.  He has usually pushed all our buttons by that point as well, and just when we can’t take it or each other any more, voila’- we are there!  All is good and very worth the effort.

I think Kreg is on a trek again. He has led this search for an opportunity to challenge nature and human biology. We have learned of amazing research and technology, met knowledgeable and energetic people, and experienced super-human kindness in every way, shape and form. Kreg is and will always lead the way- even in ALS. He’s helping to write the book!

Check in often, we will keep you posted.

WIth much love, Elizabeth

Kreg’s in!!!

The power of positive thoughts, prayers and well wishes paid off! Kreg is set to have 6 million to 8 million stem cells transplanted into his body on April 10th.  Please keep the good energy flowing this way!

Go Stem Cells!

I once heard a DJ on the radio say that nothing good ever came out from Barrington, Rhode Island. I couldn’t disagree with him more. I think that Barrington could be the epicenter of everything good about mankind.

The other day we sent out an email asking some friends and neighbors to volunteer  their help for the ALS Gala in June. We needed three or four volunteers, and we got twenty-five.

It’s been a long harsh winter. When you have neighbors like the Pattons, McDermotts and Rizzutos, you never have to worry about shoveling the snow in your driveway. One night at 2:00 a.m. at the tail-end of a blizzard, I heard somebody shoveling snow and wondered who the heck would be out this time of morning (or night) doing their walk. I went back to sleep. When I woke up in the morning to a cleared driveway and walkway, I realized that person had done my walk.

Our firewood guy, Brian Joughim, dropped off a cord of wood. I wanted to pay him, but he wouldn’t let me. Brian was out of work at the time.

When the leaves were spilling out of the gutters this fall and I thought I’d have to live with them that way, through the winter,  no worries, the McDermott family showed up, ladder in hand, and cleaned every gutter in my house.

I have a lot of appointments in Boston, two or three a week sometimes and somebody has to watch the dogs. Dawn Sletta does, free of charge.

When I asked Bonnie Soper is she could be my personal trainer and help me combat the weakness and rigidity that was/is progressing in my body, she offered to compensate her time.

Julie Gaffney and her Heartworks – RI crew gave us a ‘plane ticket to fly Kyle home on his Break. I think they are also behind the incredible Secret Santa basket left on our doorstep this Christmas that contained foods, gifts, and gift cards to local merchants in Barrington, totaling more than a couple thousand dollars. Julie is also doing the invitation for the ALS Gala this spring.

When Luke the barber cuts my hair, he never fails to offer a free shave,  knowing that Elizabeth is too busy to do it herself.

Lynn Caesar, Sallie Newton and Melissa Horne hardly let a week go by without an elaborate meal, baked goods, etc. delivered to our house. CP dropped off a box full of Blount soup the other day, yum!

When the Pink Whales Foundation threw me a golf fund-raiser, Dave Smith donates a car for the hole-in-one contest.

After much deliberation and real estate hunting in Bristol and Providence, we contemplated moving into a one-story condo or loft. The thought of adding an addition to the house to accommodate my future needs seemed too daunting. The decision to add on to the house, pales in comparison to the thought of moving away from our friends and neighbors. We decided to go ahead with the addition. Did I forget to mention that some friends and neighbors offered to pay for it? I respectfully declined.

They say you can never have enough friends and neighbors. It could never ring more true than when you’re stricken with ALS. We are so fortunate to live in Barrington, Rhode Island. I don’t care what that DJ said; he was flat out wrong. There is so much good in this town. God Bless Barrington, Rhode Island.

By the way, I had help with this piece as it was typed by Caroline Walsh- from Barrington, Rhode Island.

~Kreg

The next Neuralstem transplant will take place on April 10 at Massachusetts General Hospital.  Kreg completed some additional testing this week at the hospital and he passed with flying colors.  He is currently the backup candidate for the April 10 date. Keep your fingers crossed that he moves up to the be the number one candidate.  We will know more information by the end of March and will let everyone know. Thank you everyone for your continued love and support. With or without this surgery, we can move forward knowing we are surrounded by magnificent and wonderful people.

On Sunday, February 23 Kyle and I and some of our Colorado friends and family will be joining the ALS Association at Eldora Mountain for their annual Ski to Defeat ALS event. ALS continues to cripple the bodies and take the lives of the skiers and athletes, and we’re here to fight back.

Skiing is an incredibly unique experience in the way it brings a family together and passes down from generation to generation. My dad has been skiing his entire life and it may be the biggest thing he has given to my brother and I. Since we could stand, we were put on planks and whizzed down the mountain between my dad’s legs. We grew older and performed pizzas and french fries. We followed dad through little trails through the trees and watched him send spread eagles off jumps and followed suit. Sometimes we’d wiped out and he’d clean up the yard sale. He took us down steeps, bumps, and woods, constantly pushing us and making us better and leaving no room for fear. We would chase after him and try to spray him when we stopped, but somehow he always got us back better.

Skiing is something he loves so passionately and has completely engrained in my brother and me. Being a skier is one of my largest identities and has had insurmountable influence on my life and passions. Sharing his love for the mountains has completely shaped my life and led me to where I am today. His passion for adventure, competitive drive, and quest for fun and laughter lives on through my brother and I as we race each other through the trees or in the backcountry.

Sadly, ALS has stolen dad’s ability to ski.

The seasons have been an interesting way to measure the impacts of this disease. The 2011-2012 season he was shredding hard. At this point I was always right on his tail, but he would still manage to beat everyone down the mountain. The highlight of that season was our backcountry venture to Mt. Washington, New Hampshire. With his skins on, he powered straight up that trail with ease and skied down a happy man. I recently completed the same venture, and let me tell you it was not easy. That season, dad was going full strength and ripping hard.

Skinning and skiing Mt. Washington in 2012

Last season, things were drastically different. The man who once ripped through trees, blasted through bumps, straightlined down groomers had slowed down tremendously. Gloves were traded for mittens since he couldn’t really move his fingers. He could no longer grip his poles or use his arms for balance. I had to buckle his boots, tie his laces, and zip his jacket. Slopes that he used to fly down became challenging. The legs that used to skin straight up mountains got tired after just a few runs.

But he was still out there pushing himself to the limits.

Winter Park 2013

This season he has not hit the slopes. With the stem cell trial over his head he has to be extremely cautious. As we’ve already seen, any small imperfections can interrupt or completely halt the surgery, so he has to be careful to avoid injury. He is still walking, but with great difficulty. He’s already lost most upper body strength and movement, and now his legs are deteriorating quickly. He has a hard time balancing, walking, and standing up from a sitting position. It doesn’t look like he’ll be on two planks this season.  But we’re hoping this stem cell surgery pulls through and he’s skinning up mountains once again. In the meantime, he’s still happy to belly up to the bar and enjoy an après ski brew, straw included.

If you’d like to join Kyle and I as we ski in honor of those who can’t, you can register here. http://web.alsa.org/site/TR?pg=team&fr_id=9860&team_id=270206 

Love,

Gabby

Alas, there is a saying about things not quite going as planned.

The neural stem trials have been delayed for three weeks. The first surgery is scheduled for February 5 and Kreg appears to be second or third in line for that surgery. The bad news is he’s not first in line, but since they are going to do three or four surgeries in the next few months, it appears very likely that Kreg will get the surgery done in that timeframe. Keep your fingers crossed and keep the good vibes, prayers and love coming his way. We have hope!

Sorry it’s been a while since our last post, but things have been incredibly busy for each and every one of the Palkos. My dad wants to start off by thanking everyone for the cards, gifts, kind words, well wishes, and secret Santas who graciously enhanced our Christmas. The consistent generosity displayed by friends, coworkers, neighbors, and strangers is impeccable.  Your support is undeniably appreciated.

We spent the holiday up in Vermont, and it was one of the least Palko-like vacations I’ve ever experienced. This meant sleeping in as late as we wanted and actually choosing which outdoor activities we wanted to partake in. The parents spent their days snowshoeing with the pups, and Kyle and I skied a bit, but for the most part we all just relaxed in the house together. Christmas night was spent at our great friends the Pattons’ house. Chris Patton, better known as CP, has been one of dad’s biggest supporters during all this and certainly knows how to keep his spirits high. We had a blast playing “name that song” and dad, of course, was the reigning champion. Perhaps my favorite moment of the week was the final day when my mom was cleaning out the fridge an hour before leaving. She pulled out a pint of unopened Ben and Jerry’s that had been forgotten and couldn’t be brought home. Dad and I took one look at each other then proceeded to tackle the daunting task of finishing it, one spoonful of cookie dough and brownie bite at a time.

trailblazers

This season we were blessed with what could be the ultimate Christmas miracle. Dad was lucky enough to be selected for an experimental stem cell trial at Massachusetts General Hospital. With the help of Dr. Berry and the rest of the staff, my dad has been pushed through a rigorous screening process to enable him to be eligible for a stem cell transplant. Spending 2-3 days a week at the hospital with countless MRIs, ultrasounds, and constantly being poked, prodded, and tested, dad claims he feels like Steve Austin. “We can rebuild him, we can make him better.”

Stem cells have the potential to cure the effects of ALS. More details about the transplant and this technology can be found here. This is an experimental process and has only been done a handful of times at other hospitals. Some of the patients witnessed high success rates. In one case, a man received 500,000 stem cells in his spine and went from being wheelchair dependent to walking again. Dad will be receiving the largest dose given yet, about 7 million cells. Who knows, he may come flying out of the hospital!

The surgery is tentatively scheduled for January 15^th, but it’s a very meticulous process and everything must fall precisely into place in order for it to happen. If the surgery does go through, dad will be hospitalized for 4-7 days in ICU.  We are incredibly lucky that he has been selected for this trial. His role in this experiment could pave the way for a cure for ALS. We will do our best to keep everyone updated throughout the next few weeks. So please cross your fingers, say your prayers, and send your positive vibes to us in Boston for an outcome that looks something like this: http://www.youtube.com/watch?v=TRtlkcQ6brE

-Gabby

In mid-October, I received a text from my friend Sally that said her son wanted to raise some money for Kreg. We had Sally, her husband Gary, and their son Tieg over at the house the following Sunday for dinner and we were wowed!!  Tieg is 28 and played lacrosse for Bryant University. He is still playing, is a CPA, and in 2012 he started a non-profit called Pink Whales Foundation.

Check them out! http://pinkwhalesfoundation.bigcartel.com “Pink Whales~ Making Waves- Raising money for various charities and good causes through lacrosse, networking events, and community activities”. Sounded good to us!  Pink Whales had a Fall golf tournament and a Halloween Party already planned and Tieg wanted to donate the proceeds to Kreg.

Barrington friends jumped on board! Kreg’s Barrington Surf Club buddy Dave Smith owns Factory Five Racing, (https://www.factoryfive.com/whats-new/pwf-golf-fundraiser-big-success/ )and drove in a Cobra for one lucky golfer’s Hole-In One prize of a lifetime on the 17th hole.

Kreg’s parents Barbara and Andy flew in from Michigan to play along with about 15 other Barrington friends!

The day was bright and chilly but there was fun on every hole!  We wished everyone a great round and sent them on their way. Tieg’s pretty girl “friends” were the Troupe de Volunteers that kept everyone smiling!  Thanks Ladies! No one won the Cobra, but our friend Jen Carlson did get a hole-in-one on the 13th! Not too shabby for a lady that just started playing a year ago! Congrats Jen! The tournament was a huge success and Kreg’s parents had the time of their lives. Thanks everyone for your support!

At dinner the other night, Tieg and friend Dan, another Pink Whales Director, (both pictured above!) handed Kreg a check for $10,000!!! What a magnificent experience! To know that these young people care so much to work hard, play hard and then GIVE LARGE! We are so glad to know you Pink Whales! Thank you Dan and Tieg! Keep making waves! Let’s do it again real soon!

Today is Veterans Day, and today it resonates with me more than ever. Through this process, we’ve been confronted with an extremely unfortunate fact.

Veterans are twice as likely to develop ALS than civilians, and no one knows why.

After graduating from the Air Force Academy, my dad served with the Air Force for 11 years. He flew in Desert Storm, the first Gulf War, and in a Special Operations mission. He came out of service with 11 medals, including the Aerial Achievement Medal, Kuwait Liberation Medals, Air Force Outstanding Unit Award, and something he either made up or stole from somebody else, the Air Force Good Conduct Medal.

It’s a tragedy that after our soldiers leave the battlefield, they must still fight for their lives. The ALS Association is paying tribute to these heroes through a Wall of Honor. Please take a moment to read the stories of brave veterans who served then suffered from ALS, just like my dad. It’s incredibly powerful to hear how some of the bravest, strongest people in America succumb to such a disgusting disease, and that’s why we’re doing our best to combat it in every way possible. http://www.alsa.org/advocacy/veterans/

Happy Veterans Day, and thank you to all my family and friends that have served.