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We are excited to share our new website for Mason Spencer Lives On foundation. We are proud to say this was created by Austin Spencer. He spent many hours getting this designed, coded and completed. Check it out, read our story, see the contributions we have made so far and ways you can help. masonspencerliveson.com See MoreSee Less
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Mason loved basketball and 8th grade was the last year he was able to play. The foundation presents the Mason Spencer Award each year at the final Tri-Valley Middle School assembly to an 8th grade boys basketball player. Because Mason loved gift cards and took great pleasure in spending them, a $75 gift card is given for the award. This year due to Covid restrictions we were not allowed to attend the assembly/presentation. The winner is chosen by the coaches. This years winner was chosen based on qualities like Mason such as participation in athletics, academically strong student, a leader, and a great sense of humor. He has faced medical challenges head on and not let them get him down. He is a perfect choice and all around great kid.The 2021 winner was Lucas Filarski. Congratulations Lucas!! See MoreSee Less
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Each year Mason Spencer Lives On Foundation presents a $500 scholarship to a Tri Valley senior that has the most "Mason characteristics". We would like to announce the winner for the 2021 graduating class…. Greg Stiles! Greg was highly involved in school activities, has a great sense of humor and is a friend to all! He will attend University of Missouri pursuing an Accounting degree. Congratulations Greg!! See MoreSee Less
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We are excited to announce the Mason Spencer Lives On Foundation donation of $8,000 to Cincinnati Childrens Medical Hospital. The money is targeted to go to the following two research efforts which we picked from a list of ongoing projects.-Continuation on the pilot study to treat XIAP patients with quercetin to see if IL-18 levels and other inflammatory markers go down. (Dr. Marsh has a friend in London, England also working to open this there.)-A larger treatment study of Precision Dosing for alemtuzumab so that levels are just right at the time of transplant to prevent GVHD and mixed chimerism. Thank you to those who contributed to the fund over the last year. It is greatly appreciated! Should anyone else wish to contribute to aid in future donations/scholarships, here are the details. • To donate online: click on the donate button AT THE BOTTOM of the Fund description: ilprairiecf.org/mason-spencer-lives-on-fund **it should say Mason Spencer Lives On in your PayPal donation window or you have clicked the incorrect donate button• To donate by phone with a credit card: Call 309-662-4477 • To donate with a check by mail: Make your check payable to "IPCF-Mason Spencer Lives On” Mail to Illinois Prairie Community Foundation, 915 E. Washington St., Suite 2, Bloomington, IL 61701 See MoreSee Less
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2 years ago

Mason Spencer Lives On
Mason Spencer Lives On See MoreSee Less
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2 years ago

Mason Spencer Lives On
Mason Spencer Lives On See MoreSee Less
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2 years ago

Mason Spencer Lives On
Today we should be celebrating Mason’s 21st birthday. Instead, we celebrate the 15 years we had with him. He is missed every day and the wonders of what he would be doing now never end. One thing for sure, he would be having a big party. As all of his friends certainly remember, he had a birthday party every year. He would start talking about the birthday party he would have next year as soon as this one ended. Thanks to Cincinnati Children’s and Austin’s selfless donor, in the last week we celebrated his 7th re-birthday and 24th birthday. To help others have an outcome like Austin vs Mason, Mason’s foundation continues to donate to research at Cincinnati Children’s. We were intending to hold a fundraiser last year to aid our mission. Unfortunately, due to COVID-19 that didn’t happen and wont this year either. Currently we are in the process of making a donation to Cincinnati Children’s for research. Dr Marsh has just sent the list of projects for us to choose from. Once we make our choice and send our donation the project(s) and amount will be posted. Please help us celebrate Mason’s 15 years on earth at what should be his 21st birthday with a donation to the foundation. • To donate online click on the donate button AT THE BOTTOM of the Fund description: ilprairiecf.org/mason-spencer-lives-on-fund **it should say Mason Spencer Lives On in your PayPal donation window or you have clicked the incorrect donate button• To donate by phone with a credit card: Call 309-662-4477 • To donate with a check by mail: Make your check payable to "IPCF-Mason Spencer Lives On” Mail to Illinois Prairie Community Foundation, 915 E. Washington St., Suite 2, Bloomington, IL 61701.Details about the foundation. Each year the foundation gives a $500 scholarship to a graduating TV student, $75 award to an 8th grade basketball player, and to date has contributed $20,000 to Cincinnati Children’s for research. We choose the projects the funds are directed to. We target ones which would benefit those in Mason’s situation (with XIAP or GVHD related). The projects chosen to date are:• Graft Versus Host Disease Research (Helped fund the Mice portion which was unfunded) There was a funded project to validate a human peripheral blood screening test for acute GVHD (to detect it before symptoms develop), but an unfunded related project to develop the same test in mice and test different treatments in transplanted mice using the same blood test to detect acute GVHD before it develops. They were doing this so that hopefully they were successful and hopefully had human trial of pre-emptive treatment in patients with positive screening results in a few years, would know what agents to use/what should work best• Dr. Khandelwal’s work targeting prevention of GI GVHD (gastrointestinal graft vs host disease).• Dr. Marsh’s XIAP work on targeted treatments.• Pilot study of an antioxidant/anti-inflammatory medicine as a possible treatment for XIAP deficiency to decrease IL-18 levels which cause inflammation. The pilot essentially consists of patients taking it for several weeks and we measure IL18 levels before, during, and after. • Continued work on a blood screening test for GVHD (gastrointestinal graft vs host disease) which we started with the mice portion. See MoreSee Less
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Mason loved basketball and 8th grade was the last year he was able to play. The foundation presents the Mason Spencer Award each year at the final Tri-Valley Middle School assembly to an 8th grade boys basketball player. Because Mason loved gift cards and took great pleasure in spending them, a $75 gift card is given for the award. This year due to Covid there was no assembly and while the winner was selected during Spring 2020, the announcement was delayed. The winner has now been given the award via Zoom and recorded for us to see. (Thanks Brent Ward!)The winner is chosen by the coaches. This years winner was chosen based on qualities like Mason such as highly involved in Tri-Valley in activities such as student council and athletics, academically strong student, terrific work ethic, and perseverance to overcome challenges. He is a very worthy candidate and all around great kid.The 2020 winner was Henry Masters. Congratulations Henry!! See MoreSee Less
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𝐇𝐢𝐬𝐭𝐢𝐨𝐜𝐲𝐭𝐨𝐬𝐢𝐬 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐌𝐨𝐧𝐭𝐡 𝐅𝐚𝐜𝐭:Share with your family and friends and ask them to share with theirs – so more people will Know Histio. #IkNOwHISTIOLearn more at www.histio.org#HistioAwareness2020 #HistioAwareness See MoreSee Less
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𝐓𝐨𝐝𝐚𝐲’𝐬 𝐇𝐢𝐬𝐭𝐢𝐨𝐜𝐲𝐭𝐨𝐬𝐢𝐬 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐌𝐨𝐧𝐭𝐡 𝐅𝐚𝐜𝐭:Share with your family and friends and ask them to share with theirs – so more people will Know Histio. #IkNOwHISTIO Learn more at www.histio.org#HistioAwareness2020 #HistioAwareness See MoreSee Less
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Each year Mason Spencer Lives On Foundation presents a $500 scholarship to a Tri Valley senior that has the most “Mason characteristics”. We would like to announce this years winner….Drew Kitterman.Drew will be attending Colorado State University where he plans to major in Business.Congratulations Drew!Unfortunately the award ceremony was online this year so we were not able to congratulate Drew in person. Mason’s scholarship announcement is around the 28:45 mark. www.youtube.com/watch?v=1gyGoEbPYtU&feature=youtu.be See MoreSee Less
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While we would give anything to celebrate with Mason today on his 20th birthday, we will instead celebrate the 15.5 years we had with him and the fact that we were able to send another donation to Cincinnati Childrens Medical Center. Mason Spencer Lives On Foundation just sent $8,500 to Cincinnati Childrens Medical Center. When we donate to CCHMC, they allow us to select where the money goes. We discuss with BMT doctors the different options and pick which we feel would have benefited Mason. This year we will again direct to two specific research efforts. 1. Pilot study of an antioxidant/anti-inflammatory medicine as a possible treatment for XIAP deficiency to decrease IL-18 levels which cause inflammation. The pilot essentially consists of patients taking it for several weeks and we measure IL18 levels before, during, and after. 2. Continued work on a screening test for GVHD (gasteravintestinal graft vs host disease) Mason had XIAP and he developed GI GVHD after his transplant so we are hopeful that this research will help those affected in the future.Happy 20th Birthday Mason! See MoreSee Less
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On the last day of school, Bart attended the final assembly for Tri Valley Middle School. (Tamara was in Cincinnati w Austin at appts.) At this assembly, the Mason Spencer Award, which is a plaque and $75 to Dicks Sporting Goods, was presented to this years winner. Mason loved to get gift cards so we feel this is a fitting gift. The winner is chosen by the coaches and has to be an 8th grade basketball player. Mason loved basketball and 8th grade was the last year he was able to play. This years winner was chosen based on qualities like Mason such as terrific work ethic, put team goals first before his own, and is a great kid both on and off the court. This years winner was Logan Petrilli. Congratulations Logan!! See MoreSee Less
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Each year Mason Spencer Lives On Foundation presents a $500 scholarship to a Tri Valley senior that has the most “Mason characteristics”. We would like to announce this years winner….Carson Schaefer. Carson will be attending Illinois Wesleyan University where he plans to major in Biochemistry and run track. Congratulations Carson! See MoreSee Less
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"Distance means so little…when friendship means so much!" #RareDiseaseDay #Histiocytosis #LiamsLighthouse — Join us in celebrating Rare Disease Day on February 28th. See MoreSee Less
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September 26, 2018 See MoreSee Less
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A donation has been made! Thanks to all our supporters throughout the past year and those participating in our fundraiser last year! Because of you, we were able to send $6000 to Cincinnati Childrens Medical Center this year. When we donate to CCHMC, they allow us to select where the money goes. We discuss with BMT doctors the different options and pick one or two that we feel would have benefited Mason. This year the money will be directed to two specific research efforts. Dr. Khandelwal’s work targeting prevention of GI GVHD (gasteravintestinal graft vs host disease) and Dr. Marsh’s XIAP work on targeted treatments. Mason had XIAP and he developed GI GVHD after his transplant so we are hopeful that this research will help those affected in the future. See MoreSee Less
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Each year we give a $500 scholarship to a Tri Valley senior that has the most “Mason characteristics”. This year it’s Mason’s graduating class so it was a hard year for the committee to pick a winner. Due to this fact we added an “award” to each nominee. It has a saying he had written in 6th grade on a pillow case they made and has his actual signature. Thanks to By the Lake Designs in Downs for creating this for us. Now the important part of this…..we would again like to congratulate this years winner….Clayton Leipold. Clayton will be attending Cornell College and playing basketball. See MoreSee Less
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Our May SOTM is now available for pre-order! Click the link in the comments below to shop this month’s shirt👚 Not only will you be making a cute purchase, but you’ll be giving back while doing it! 50% of the shirt’s profit will be donated to The Mason Spencer Lives On Foundation💕 #MegAndMarie ••Make sure to size up if you want a looser fit•• See MoreSee Less
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Come out and have some fun while helping us raise money for Cincinnati Children’s Hospital!Flier updated w band information! See MoreSee Less
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Come out and have some fun while helping us raise money for Cincinnati Children’s Hospital! See MoreSee Less
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This week Bart attended the final assembly at the Tri Valley Middle School. (Tamara was out of town.) At this assembly, the Mason Spencer Award, which is a plaque and $75 to Dicks Sporting Goods, was presented to this years winner. Mason loved to get gift cards so we felt this was a fitting gift. The winner is chosen by the coaches and has to be an 8th grade basketball player. Mason loved basketball and 8th grade was the last year he was able to play. This winner is chosen based on qualities like Mason such as great work ethic, listens to coaches, never argues or complains, and puts the team first. This years winner was Zac Creamean. Congratulations Zac!! See MoreSee Less
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Last week we attended Tri-valley Academic Awards ceremony to announce this years winner of the Mason Spencer Award. Colt Baker will receive $500 towards his tuition at Illinois State University where he will major in business. Congratulations Colt! Attached is a video describing the award and the winner, a picture with Colt, and also a picture of the perpetual plaque that will hang at the school. See MoreSee Less
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Sedona, AZ See MoreSee Less
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This weekend I attended a fundraiser for HLH. It was a trivia night in St Louis put on by the Matthew and Andrew Akin Foundation. For one round, the questions were about survivor and angel children that have previously been ridden for in the 700 mile ride. Some were easy answers like Mason’s. Other were not as simple. (See attached picture)Please remember someone needs blood every two seconds and there are 14,000 patients waiting on a donor to appear in the marrow database. So go give blood every 56 days and join be the match! See MoreSee Less
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Happy 17th birthday Mason!You are always loved, never forgotten, forever missed ❤️ See MoreSee Less
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This week was homecoming for TriValley. We have moved the announcement of the nominees for Mason’s scholarship to be this timing. The winner will still be chosen towards the end of the school year and announced at the academic awards. Watch the video to see who the nominees are. Congratulations to all! See MoreSee Less
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Timeline photosBringing hope one pedal stroke at time!!! #HLH #700MilestoHope See MoreSee Less
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Last day…we ride for the survivors, including Austin. See MoreSee Less
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Day 5 700 Miles to Hope 2016- Today we ride for our angels, for all the angels. See MoreSee Less
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Day 4 700 Miles to Hope-Today we ride for Madison See MoreSee Less
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Day 3 700 Miles to Hope- Today we ride 134 miles for Aksel and Aspen. See MoreSee Less
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Day 2 700 Miles to Hope 2016- Today we ride for Camden See MoreSee Less
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Day 2 700 Miles to Hope 2016- Today we ride for Camden See MoreSee Less
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Day 1 700 Miles to Hope 2016-Today we ride for Mason. See MoreSee Less
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Everyone riding is on their way to Mississippi today! See MoreSee Less
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Thanks to Bob Akers for surprising Bart at the annual golf outing with a plaque to place at Mason’s tree. We placed it there tonight. It’s the perfect addition. ❤️Also thanks to those that organized/participated in the Annual Hoosier Shootout for donating a portion of the proceeds to Mason Spencer Lives On. See MoreSee Less
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Alyssa dedicated her song to Mason. Listen to hear her beautiful voice. Thanks Alyssa. We love you ❤️ See MoreSee Less
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Today the Mason Spencer Memorial Award, which was given from the Mason Spencer Lives On foundation, was presented to an eighth grade boys basketball player. Mason loved basketball and we wanted to have him remembered where he last played. This will be an annual award where the player receives a plaque and $75 gift card to Dicks Sporting Goods. Mason loved getting gift cards which is why we choose this and it will allow the winner to get some sporting items of his choice! Some of the criteria used by the coaches to select the winner was… Someone that always hustles and is always paying attention in practice and games. Someone that always has a smile and never argues or complains. Someone that is a free spirit. Someone that always put the team first instead of themselves. We are very pleased to announce this years recipient is Anthony Albertini! Watch the video to hear the award presented and a little about both Mason and Anthony. Congratulations Anthony! See MoreSee Less
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Mason Spencer Lives On foundation is providing one $500 scholarship to the senior at Tri Valley with the most Mason-like qualities. This is the first of multiple items we intend to do in Mason’s honor. The nominees and winner were announced yesterday at the academic awards. (Video attached) The high school teachers nominated the following students:Ben ElamKyle JonesJordan KruegerMatt SorensenAlly WiegandAnna Wielander The selection committee made up of both middle school and high school teachers selected Jordan Krueger as the winner. Jordan will be attending Illinois State University in the fall. Congratulations Jordan!! See MoreSee Less
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In honor of Mason, the mother/caregiver for each BMT patient staying on the BMT floor or PICU at CCHMC or staying at Ronald MCDonald House next door will receive a package with Perfectly Posh goodies and candy. In addition, the BMT nurses will also be receiving a basket full of goodies. These were shipped out to Cincinnati today. Both the nurses and the caregivers are very deserving of this and they will appreciate the gesture very much! Thanks to Bridgette Roop for organizing this and giving her commission to make the nurse basket. Thanks to all others that donated time and/or money to make this possible. ❤️ See MoreSee Less
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Mason passed away just over 6 months ago from a rare disease, XLP2/HLH, and today on rare disease day they have placed his headstone. Today was also the day all decorations had to be removed for a couple weeks for cemetery cleaning. So at least now he still has something there. The headstone is placed facing so his picture is looking at his tree. The stone is reddish and is currently the only one that color in the area he is. We choose a unique color and shape to match his personality and style. We miss you Mason and think of you daily. And we love you forever and always. 💔 See MoreSee Less
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Profile picturesRare Diseases Day is tomorrow. See MoreSee Less
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Today when Austin and I went to his appointment at St Jude in Peoria, we took with us over 40 blankets which were made in memory of Mason at Northside Church of Christ by youth members and their friends. Thanks to all that helped in any way! The staff at St Jude was very excited to receive these. They will be handed out to patients when they are there and not feeling well. These blankets are very much appreciated over the thin, not soft hospital blanket! Tommy also had an appt today. For those of you that don’t know, Tommy is the same grade as Mason and at our neighboring school. He is battling brain cancer. We were not happy to find out he was not feeling well. But we were happy to see the staff take him a blanket to get warm. We hope you are feeling better tonight Tommy! Team Tommy #noonefightsaloneHere is a picture of the kids at the church with the blankets. See MoreSee Less
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Thanks to Tri-Valley FFA for holding their blood drive! And thanks to everyone that gave!! They collected 56 units of blood which was 11 over their goal. Some students that would not have normally donated did so in honor of Mason which means a lot to us. ❤️Attached a few of the posts made. See MoreSee Less
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Today would have been Mason’s 16th birthday. In honor of this, we went to the high school this afternoon and had a balloon release with his sophomore class. Happy Birthday Mason! Bazinga! See MoreSee Less
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As I am sure everyone that doesn’t go to Tri-Valley has figured out by my posts that it is a great community to live in and also a great school to attend. (Those who live go there already knew) It’s full of great teachers and some we have made "connections" with. Patti Kastor is one of them. She was even one of Mason’s teacher his last year there. Patti sent me this text and the following pictures. I wanted to share with everyone just to give you some more I soft on Mason and his impacts. ————————————–Waiting in line at Mason’s funeral, I couldn’t help but smile at the pictures of the Spencer family at Disney World. What better place to put a "Mason lives on" memory rock? "Where in Disney?" was the real question. I first thought about asking what Mason’s favorite ride was, but I wanted to give it more thought. What about near one of the many Walt quotes? Both Walt and Mason were dreamers and good with words. Mason loved to share a good quote with me. My next thought turned to Belle’s castle. Rarely did I see Mason without a book in his hand, and he kind of reminded me of Maurice. This would have been a fitting spot, but not perfect. I began to think about Mason’s personality. Obviously, he was daring, strong and brave. He tried his best to always have a positive outlook. He loved to use his wit, joke around and had a mischievous side, but was also very kind. He was so animated! When Mason would tell me a story I felt like he was sharing an exciting adventure from which he had just returned. Peter Pan’s Flight seems to be the perfect spot to pay tribute to such a beautiful soul who will remain a spirited boy in our hearts and memories. Mason Spencer lives on. See MoreSee Less
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Tonight some of Mason’s friends went to the cemetery and put some ornaments in Mason’s tree. Following this they came to our houses caroling. They had some ornaments made in Mason’s memory and brought a basket of treats. The boys definitely should not pursue singing careers 🙂 but what they did was so special!! And while it brought many tears it also brought smiles and good memories. See MoreSee Less
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We are not the only ones traveling and remembering Mason today. I got this in a text with a request to add it to Facebook for them. Thanks boys! ❤️ See MoreSee Less
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We are headed to the airport to take what Mason was planning for his make a wish trip. Hopefully it has been planned just as he wanted!! It obviously won’t be the same without him. But nothing is…or ever will be. Even packing wasn’t the same. The suitcase he is pictured with here is one he brought (or tried to bring) on most every trip since he got it that year. When he was little it would hold his clothes. When he was older it would hold his books. I’m certain today he would have wanted to bring it filled with books to read while traveling. He is the only one of the children we had to limit how many books were brought with on vacations! Mason, we miss you as much today as we did yesterday and as we will tomorrow. We love you always and forever. See MoreSee Less
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Vikings win again!! Another game closer to state! Thanks to Sandy and Gary Gawlik for taking me and the additional sign on their car. (And thanks to the Elam’s for the offer of a ride!) See MoreSee Less
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Thanks to all who donated in memory of Mason! See MoreSee Less
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7 years ago

Mason Spencer Lives On
A few of Mason’s good friends came by to visit with us before their Halloween party. It was very nice hanging out with them and sharing some memories on one of Mason’s favorite days of the year. While they visited they each drank a Mondo which was a drink they all knew Mason loved. See MoreSee Less
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Today(Sunday, October 25) is the first event with funds going towards Mason Spencer Lives On. Thanks again to the organizers, those working the event, those who made donations and all those that are attending. We are at 100 golfers now. It is not too late to play…..registration begins at 11. See MoreSee Less
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7 years ago

Mason Spencer Lives On
Mason Spencer Lives On’s cover photo See MoreSee Less
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7 years ago

Mason Spencer Lives On
Mason Spencer Lives On’s cover photo See MoreSee Less
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7 years ago

Mason Spencer Lives On
Mason Spencer Lives On See MoreSee Less
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