A long December and there’s reason to believe Maybe this year will be better than the last I can’t remember the last thing that you said as you were leaving Now the days go by so fast -Counting Crows, A Long December On January 1st, 2024 about 15 minutes past midnight, Mark came in to our room, threw up and told us he had a headache. At the time we thought it was too much junk food at the Texans game earlier in the day or nerves about returning to school. Never, in a million lifetimes, would we have suspected in that moment that this was the first sign of something much, much more serious than an upset tummy. For many, including us, the new year represents more than just a new day on the calendar. As 2023 drew to a close and we took down Christmas decorations, we were excited for all that was to come in the new year. We had big goals, dreams and aspirations that we were excited to see through to fruition. We had everything to be thankful for and we were feeling very good about the direction of our lives. Then the clock struck midnight and within 15 minutes our world, as we knew it, was flipped completely upside down. Since Mark passed on November 8th, I go back and look at pictures on my phone from exactly one year ago to the day of whatever day it is. I don’t know why I do this. Perhaps I am a glutton for punishment. Maybe it’s nostalgia. Maybe I just miss Mark. I look at these pictures and think about how at that time, last year everything was different. I see the light in Mark’s eyes in these pictures and it breaks my heart to know that these were the last few weeks or days of his childhood as he had known it. Up until January 11th these pictures were from a normal time, a different time when we did not know anything was wrong. On January 11, 2024, Ali took Mark to the pediatrician for a check-up because of the headaches. The doctor ordered a precautionary MRI to “rule anything out”. When Ali called me that afternoon and told me that they had ordered an MRI, I had a sick feeling in my stomach that I cannot explain. I broke down at work right then and there. The MRI was scheduled for January 14, 2024. Yesterday, January 14th, was the one year anniversary of that fateful MRI and our first trip to Texas Children’s knowing only that there was “a mass in Mark’s brain.” I will never forget the crippling fear and utter shock of that afternoon. I look at the pictures from that day and I see Mark with a smile as he laid in the triage room at Texas Children’s. I see him putting on a brave face as they gave him his first of many IV’s. Over the subsequent days there are several MRI’s, a surgery, a meeting with Crosby, who Mark would get to know very well. Given all that has happened in the last 12 months it seems so long ago and like just yesterday at the same time. This is how it will be for the next year when we look at pictures. On February 4th I will see pictures of a whole lot of friends and family coming together to pray over Mark, our family and his care team. On March 8th I will see pictures of us in Galveston for spring break when Mark was starting to become too weak and tired from the radiation to walk. On April 5th I will see pictures of Mark banging the gong to celebrate the end of radiation and the ensuing party at our house with all of his 4th grade friends. There will be smiles and snow cones and for a few hours that afternoon, some normalcy. On April 16th I will see pictures of a community coming together to eat burgers and raise money to help support our family in a way that only B/CS can. There will be pictures from this same day of Mark and I on an Air Force plane for the flyover before the baseball game. There will be pictures of birthdays and Easter and a trips to Colorado and Omaha. There will be smiles and tears and everything in between. We will see him walking and in a wheelchair and in some pictures his eyes will be open and in some they will be closed. There will be several stays at the hospital. We will see pictures of his baptism and of Halloween. This will go on every day up until November 8th. After that day there will be no more pictures of Mark from a year ago. This will be the hardest day. It goes without saying that last year, 2024, was the hardest year of our lives. I cannot imagine another being more difficult. We took the full-force of the punch that was 2024 right on the chin, and we are still standing. We did not go down and we will not go down. We were tested mentally, physically, emotionally and spiritually and we are stronger for it. Now, as we celebrate the New Year we reflect on how much we have grown and changed in just a year. As we sat with Mark during those last few hours, we told him that we would be okay. We are going to keep that promise to him. Perhaps instead of looking back, we ought to take everything that was learned in 2024, remember it and move forward. Not move on, but move forward. We are excited to see what this year has in store.
Please keep up with our updates as we will have some very exciting news in the coming weeks. There are certain things that are already in the works for us that will enable us to carry on Mark’s legacy and we are excited to share those with you as we get a little further down the road. We thank you for continuing to keep our family in your prayers.
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We have some very talented friends that put together an extremely special video tribute to Mark. We played this video at his Celebration of Life. We are forever grateful to our friends that edited this video, they gave us the gift of seeing Mark again and we want to share that gift with all of you.
On November 23, 2024 we celebrated Mark's life. This date was significant because it would have been his 11th birthday. I was honored to eulogize Mark and his remarkable yet short life. This is the eulogy.
I am Bryan. I am the really proud dad to two incredible boys, Mark and Jameson and husband to Ali. I would be remiss if I didn’t take this opportunity to make a couple of acknowledgements. First, Mark’s Army. That is everyone that has loved and supported Mark and our family in every way imaginable over the last year. I wish that I could stand up here and personally thank you all individually for everything that you have done for Mark and our family. Mark knew how much he was loved and supported and he also knew, unequivocally, that he was not alone in this fight. That is the greatest gift you have given us. She is going to be mad at me for doing this but I want to take a second to acknowledge Ali. I have always been in awe of her but never more so than over the last year. She is the glue that holds our family together. We all know which parent Mark got his strength from. You have shown us all what unconditional love, compassion and grace look like. And to think that you did it all with a broken heart. I knew that I had to do this today, for Mark. As his dad, I had to be the one to speak to his life and his legacy. I don’t know how I am going to get through it but I know that if Mark can get through everything he went through over the last 10 months, I can draw on his strength to get through the next 10 minutes. I’ve learned a lot about myself over the last year. One of the things that I learned is that I can convey my emotions through writing. It helped me get through some really dark days early on. I thought that writing this eulogy, this tribute would be easy. Then I started writing it. I would spend a couple hours writing and then I would tear it up and throw it away. This happened three or four times. For the first time in my life I didn’t know what to say. Don’t get me wrong, it's not because I didn’t have a lot to say. I could talk about my boys for hours. It was because I wanted it to be perfect. For him. Because he was. I felt all of this pressure to due his life and his legacy justice. One day last week, I went in his room and laid on his bed. I held Max and talked to Mark. As I lay in there thinking about what to say and how to perfectly say it, it hit me. It was almost as if Mark was telling me, “it’s fine, dad.” I am not up here today to define his legacy. He did that on his own. He did that by the way he lived. By the way he treated others. By the way he fought with everything he had while never once complaining. Whatever I say up here for the next few minutes isn’t going to change how you hold Mark in your hearts now and forever. Once I came to that realization, the words started to pour out. Most of you know Jameson, Mark's older brother. When we found out we were expecting Jameson we did as any expecting first time parents do and go back and forth on what we were going to name him. We even bought books for ideas. One of us would throw a name out there and inevitably we knew someone that had named their kid that or that was the name of someone that maybe wasn’t so nice to one of us in high school. All of you with kids know the drill. This went on for months and we narrowed it down to our two favorites, Jameson or Travis. What did we do? We named him Jameson Travis. Not for a minute did we stop to think that we may want to hang on to one of those if we had another boy at some point. Well, about a year after Jameson was born that is exactly what happened and we were right back to square one. We decided that we were going to name our second son Mark fairly early on and we never waivered or second guessed it. For all of the debate we had when we were coming up with Jameson’s name, this was the opposite. It came to us and that was it. His name was going to be Mark. We kept it to ourselves and didn’t tell anyone until he was born. Mark is not really a common name anymore. It is not a family name and we didn’t name him for religious reasons. We liked it because it was simple, it was a good strong name. He could say it in a crowded restaurant when introducing himself and people would understand him. Mark. When he was born and we met him, the name fit him perfectly. As he grew a little older it fit him even better. He just looked like a Mark, if that makes any sense. We had a lot of little nick names for him, Markie, Marky Mark, Markers, Mark-A-Roni and cheese, but the one that stuck was Sweet Mark. His name fit him to a tee. The Cambridge dictionary defines the term “to leave your Mark” as having a lasting effect that changes someone or something (repeat). We didn’t know it then but we could not have picked a more perfect name for our son. As I laid in Mark’s bed that afternoon thinking about what to say today I saw an unfinished Lego set sitting on his nightstand. It was the last Lego set that we ever worked on together. It was a scene from Star Wars and we were about 100 pieces away from putting the finishing touches on it in April. It was around that time his vision changed and he didn’t have the dexterity to hold the little pieces, so we never were able to finish it. I started to cry thinking about that Lego set. I was sad because we weren’t able to finish it together. I was mad because it reminded me of all of the joy that his cancer robbed him of. I thought about the parallels between Mark’s life and this unfinished Lego set. I texted someone shortly after Mark died that one of the great tragedies in all of this is that we would never be able to see all of the good that Mark would do in the world. But I was absolutely wrong about that. I can see right now the good that he has already done in this world. The day that Mark passed away we had the blessing of being able to tell him things that often get left unsaid. I told him that in his 10 short years he touched more lives than people that live an entire lifetime. Mark, everyone is here today because of your light, your spirit, your smile, your kindness. A friend sent us a message after Mark died and I think that she said it perfectly. She said, “Mark was a shining light from the moment I met him. He shined different and better than all kids his age – at all times. He had something different and pure about him that was palpable.” We all saw that kiddo. You left your Mark on all of us just by being you. Mark’s cancer was called Diffuse Midline Glioma. It is extremely rare. There are only 150-300 children diagnosed each year. The odds are of even knowing someone that would get diagnosed with this are staggering and sickening, let alone it being your child. We spent countless hours asking why Mark? Out of all of the kids, why him? God doesn’t make mistakes, so there has to be a reason, right? Early on we prayed that if Mark was rare enough to get this cancer he was rare enough to beat it. We believed that and held onto that hope until it was clear that God was calling him home. We prayed that because Mark was so special that maybe God gave him this cancer so that we could all be witness to God’s miracles. As time went on and it became clear that Mark was not going to be miraculously cured, our thoughts shifted. We prayed that maybe Mark would get into a trial. And this trial would not just cure him but be a cure for all children afflicted with this awful cancer. We prayed that even if Mark couldn’t be saved, that a cure would come from a trial that Mark was a part of. We prayed that his life would not be in vain. Mark never got the chance to be a part of clinical trial. Towards the end he was just too sick. He fought so hard and courageously but he just never caught a break. When it became clear that God was calling him we spent a lot of time pondering that. We now know that God knew that Mark could do more good for the world from Heaven and he was calling his angel home. We are already seeing signs of this. Mark has been gone for 15 days and there are already certain tangible things in the works to help other kids, in his name. This is what he has done from Earth in 10 years, imagine what he will do from Heaven with eternity. You left your Mark, kid. The cancer took his life but it most certainly did not define his life. It was through his diagnosis that we were all inspired by his strength and his remarkable courage. He did everything that was asked of him. Every radiation treatment, every surgery, every IV and blood draw, every test, every pill, every ounce of medicine, every physical therapy session. He did all of this and somehow he never once complained or asked why him. It would have been totally understandable, normal, for him to say that it wasn’t fair. It wasn’t fair at all. But he never said that. The closest thing we heard to a complaint happened in June. We were in Omaha watching our Aggies in the College World Series. This was after the radiation had taken it’s toll on his body and the steroids had caused him to go from 70lbs to 110 lbs. He was in a wheelchair most of the time and sleeping about 18 hours a day. Either the tumor or the radiation had made him physically unable to smile or cry. It was with tears in his eyes that he asked Ali, “when am I going to be a normal kid again?”. I’ve thought about that a lot. It breaks by heart to think about but then it occurred to me. You know what Mark? You were NEVER a normal kid. You were always special. We are all better for knowing you. You left your Mark. Mark always cared about others more than himself. During one of his stays in the hospital, I can’t remember which one, he told one of the child-life specialists that he was concerned about Ali and I. Here he was, in a hospital bed, hooked up to an IV, probably a day or so removed from brain surgery and he was concerned about us. He was always this way. Not just with us but with everyone. He genuinely cared about others feelings more than his own. He always wanted to make sure that others were okay. I think that is why he held on so long at the end. He wanted to make sure that we were okay before he left us. The evening that Mark passed we told him that we would miss him tremendously but that we would be okay. He left us about 10 minutes later. All of us will always hold a special place in our hearts for Mark. Because of the way that Mark was maybe we will be a little kinder to someone today. Maybe we’ll try a little harder to bring a smile to someone’s face or to make them laugh. Maybe we will remember Mark when we are faced with a challenge or something we are scared to do and remember his bravery and courage. You lived up to your name, Mark. You have touched the lives of so many. People that you have never met. People across the world that are inspired by your courage and heartbroken by your loss. We see the Mark you left when people share with us how you touched their lives. Or how you were such a good friend. I know that we will continue to see ways that you have left your Mark until we get to meet you up there again. I promise you that we will do our best to honor your legacy and help you continue to leave your Mark from here. And as you so inspiringly said over and over, we “just won’t let anything get in our way.” But we will still miss you incredibly. We are so blessed that God chose us to be your parents. We will always cherish the memories that we made with you. In looking through all of the photos and videos in preparation for this weekend we were reminded of so many of those great memories. We will take comfort in the fact that we didn’t waste any of the time with you that we were given. I will see your soul in every blue and orange sunrise and sunset. I will think of you every time I hear a child laugh. I will miss you every time I step on a Lego. Unfortunately we don’t see a lot of blue elephants in College Station but I will always think of you every minute of every day. Thank you for the 10 incredible years that we got with you. Thank you for everything you taught us. Thank you for being such an amazing kid. We will see you again one day buddy. From the time the boys were little, we recited the same bedtime prayer that most of you have probably heard and many of you probably say with your kids. “now I lay me down to sleep. I pray to the lord my soul to keep. MAY angels guide me through the night and wake me in the morning light.” At least that is how Ali, Jameson and I said it. Mark would never say “may angels” it was always “my angels”. We laughed about about it and tried to correct him but it didn’t work. Before we started the prayer we would say, “now Mark, remember it’s “MAY angels”. Then we would say the prayer and it was right back to “MY Angels”. Now this wasn’t just when he was three and didn’t know any better. This went right up until the time that he was no longer able to speak, just a couple of months ago. “MY Angels guide me through the night”. It turns out, we were saying it wrong. They were his angels and he was one of them all along. Mark's celebration of life will be tomorrow, November 23, 2024 at 11:00am CST. For those that are unable to join us in person, I have included a link below for the livestream of the service.
https://youtube.com/live/bC2XCtN_7Bc We have received a number of requests to re-open the Mark's Army online store for the Mark's Army t-shirts. The store is open until 11/25/24. We are not sure if/when we will reopen the store, so please make sure and order extra because kids grow!
The link to the store is below. https://marks-army-fall-2024.itemorder.com/shop/home/ Mark's life will celebrated on his birthday, November 23, 2024 in College Station.
A visitation is planned for Friday, November 22, 2024 from 5pm-8pm at Callaway-Jones Funeral Home, 3001 South College Avenue, Bryan. Celebration of Life will be on Saturday, November 23, 2024 at 11am at Grace Bible Church, Creekside location, 4601 Williams Creek Dr, College Station. More details can be found by clicking the link below. https://callawayjones.com/obits/mark-kennedy-massey/ "The brightest stars burn the fastest, so we must love them while we can" - Anna Todd
On Friday, November 8th at 6:22pm Mark went to Heaven to be with the Lord. He passed away peacefully at home with me, Ali and Jameson by his side. His courageous fight is over and he is free of the shackles that bound him here on Earth. We are so blessed that we got a chance to say goodbye to our Sweet Mark. We had time yesterday afternoon to tell him everything we wanted to tell him. We told him that he is our hero. We told him it was okay to not fight anymore. We told him that we were going to miss him incredibly. We let him know that we would be okay. We told him he would always be with us and us with him. We told him that he left an impression on this world that will live on. Most of all we told him how much he was loved by all. Mark will be remembered for his gentle soul, his generous spirit, his witty sense of humor and his infectious laugh. He was a lover, not a fighter. Until he had to be. And when he had to be he was the bravest, toughest warrior. In his short (almost) eleven years he has left a legacy that will live on long after him. We are all better because of Mark. You burned the brightest Sweet Mark. 11/23/2013 - 11/8/2024 On Tuesday, September 24th we met with Mark’s team of doctors at Texas Children’s. We went to Houston with the hope of discussing an alternative clinical trial option. Instead, they let us know that Mark would not be eligible to participate in any clinical trial. Given his condition, they fear that it may hurt him more than it would help him. Before you read on, please know that Mark is not in any pain and from what we can tell he does seem content. Currently, he is not walking or talking. He cannot move his limbs or open either of his eyes. He is eating very little and sleeping about 20+ hours a day. He is no longer able to nod yes or no, so communicating has become challenging. We know that he can hear us and understand us because he does follow directions when he can. The doctors have told us that these are all signs that signal the body is starting to shut down and the end of life is approaching. Taking care of Mark at home had become increasingly difficult for the two of us and it was time that we asked for help. So, we have enrolled him in Hospice Brazos Valley. Pediatric hospice is different and a child can continue with their treatments while in hospice care. We will continue to give his daily chemotherapy medication (Everolimus) as long as he tolerates it. We have no plans to have an MRI done to see about tumor progression at this time. His physical health tells us the tumor has most likely grown. The team at Hospice Brazos Valley has been very helpful so far and we appreciate all that they do for us. Right now we are enjoying our time together and we have a pretty good daily routine set up. Trying to keep things as normal as possible given the situation for both Jameson and Mark. We have put out some mums for the fall and we "watched" some Halloween movies together on the couch. Friends have been providing meals for us, and occasionally dropping off a Starbucks for Ali since she rarely leaves the house. We are very blessed to have so many people offering to help out. We spoke with Mark's oncologist on Tuesday as well as a nurse navigator for the Pediatric Brain Tumor Network. They both reassured us that Ali and I have done everything we can and have been excellent advocates for Mark's health. It was comforting to hear that, although we are devastated that we could not do more to rid his brain of this tumor. We would do anything and everything for him and we were never given the chance.
As you have done since the start, please pray for Mark and our family and all of the people that have been touched by Mark on his journey. Please pray that Mark continues to be pain-free. Please pray that he is not scared. Please pray that he knows how much he is loved. Please pray that he knows how proud we are of him. Please pray he understands that we know he is fighting as hard as he can. Please pray that Mark is able to rest peacefully in his home. Please pray for comfort for Mark’s friends who are too young to have to deal with this grief. Please pray for all of the parents of Mark’s friends that they have the strength to try and explain the inexplicable to their babies. Please pray for Jameson that he knows Mark will always be with him. Please pray for comfort for Ali and me. Please pray for a miracle. "Mark is a friend to everyone he’s ever met. He is the kindest, sweetest, most pure soul. For anyone that is reading this we ask that you give Mark back the same love that he has put out into this world. He has made the world a better place for everyone who has ever met him and it is our turn to pay that love and kindness back to him." -CaringBridge Post, January 16, 2024 In that same very first blog post that I wrote that awful night in the hospital I started by saying, "As Mark's army of supporters continues to grow..." as a way to preface why we were starting the CaringBridge page. I used the term as a way to describe the groundswell of support we were receiving via calls, texts, Facebook messages, etc. I did not think twice about what I wrote. A sweet friend of ours took that simple sentence and ran with it. She asked Jameson what Mark's favorite colors were and she had blue and orange rubber bracelets made for Mark's classmates and others who wanted to support him. It was a kind, simple gesture to show Mark that everyone was supporting him and praying for him. Over the last 9 months Mark's Army has come to symbolize an entire community lifting up a little boy and his family during the most difficult time imaginable. Mark's Army symbolizes love, strength, support, community, faith, family, friendship and hope. There is no way that I can begin to list all of the kind things that people have done for Mark and our family since the start of this nightmare. If I lived 100 lifetimes I would not be able to express our gratitude for everything you have done and continue to do. Your love and kindness gets us out of bed some days and I cannot fathom what our lives would look like without all of your support. I pray for other families going through something similar that do not have an Army of their own. Perhaps there is no greater testament to everything that Mark's Army symbolizes than the candlelight prayer vigil that was organized on Sunday night for our sweet boy. On Sunday morning, several friends went out and covered the neighborhood with blue and orange bows. They lined the main parkway and the trees around the park. They put them on houses and mailboxes to symbolize the community's support for Mark and our family. Around 7:00pm on Sunday evening upwards of 200 friends, family and complete strangers gathered together at Pebble Creek Elementary's park to pray over Mark and our family. Unlike the prayer vigil in January, Mark was not physically able to attend and Ali and I stayed home with him. The event was live-streamed so we were able to watch it in real time and Mark listened. As the camera panned the giant circle of supporters, we were overcome with emotion. It was not lost on me that this is same park where Mark would laugh and play at recess with the very friends that had now come to pray over him. The same park where Mark would sit with a friend and talk because they needed a friend. The same park that we would go and work on our baseball swing. And the same park where we celebrated Jameson's 12th birthday just one day before our world was changed forever. As the sun set on that Sunday evening, Mark's Army descended on that park, lit candles and vehemently prayed for Mark's healing, our family's strength and for one another. Mark's Army prayed as a group, they prayed individually and they sang. It moved us to our core. Who is Mark's Army? It is everyone that has prayed a prayer or shed a tear over Mark. It is anyone that has put on a blue and orange bracelet or a t-shirt over the last 9 months to show their support. It is Ali and me and Jameson holding him and each other up everyday. It is the collective effort of an entire community to lift our family up and support us in every way they can. It is the doctors and caregivers that are trying to do whatever they can to save him. Mark's Army is everyone who has answered our plea to give Mark back the same love that he put into this world. You have paid that love and kindness back to him and we are eternally grateful to each and every one of you for that. For the last several months we have referred to Mark’s cancer in very broad terms, “the type of cancer Mark has” or “brain cancer”. The reason that we were so vague is because we did not want you to Google ‘Diffuse Midline Glioma’. If you do, you will immediately see things like, average survival is 9-12 months from diagnosis, <1% of chance of 5 year survival, terminal, Grade 4. We did not want to reduce Mark’s disease down to a statistic and we did not want pity. We are at a place now where we are ready to share with you the type of cancer Mark has. Diffuse Midline Glioma (DMG) is aggressive, it is inoperable and it is in a part of the brain that controls, speech, personality, motor function and vision. Simply put, it is the worst of the worst. It is also extremely rare. Only 150 – 300 children are diagnosed each year. It makes me sick to my stomach to look at the numbers and think about how unlikely or unlucky it is to be stricken with this disease. We always thought that if Mark is rare enough to get this disease, he is rare enough to beat it. We knew that the odds were against us from the beginning but he has always been a special child. It has always been our hope to keep him alive long enough for there to be a drug or a treatment that would be effective in stopping the tumor from progressing. Currently there are no proven options, only trials. Experiments. After the initial diagnosis a patient undergoes radiation with the hope of shrinking the tumor or stunting it’s growth. After radiation some patients enroll in a clinical trial to try and shrink the tumor further. Other’s simply enjoy their time with family until the tumor progresses again. It is not a matter of if the tumor will progress, it is a matter of when. At this point, some patients will undergo radiation again or re-enroll in another trial specifically for “re-occurrence.” This is the best option available, if you are even healthy enough to qualify and that is unacceptable. It felt appropriate to share this now because it is Childhood Cancer Awareness month. It is important that we all come together not just for Mark and for our family but for every child and every family that is diagnosed with cancer. Cancer is the second leading cause of death in children aged 1 to 14 and the number one leading cause of death by disease in children. Childhood cancer is grossly underfunded with only 4% of federal funding for cancer research directed towards childhood cancer. In the past 30 years only seven drugs have been approved by the FDA to treat childhood cancer. In the same time over 200 drugs have been approved for adults. This is not the plan that we had for Mark’s life or our own but it has been thrust into our lives and laid at our feet to do something about. It is a cause that you don’t know you need to get behind until it is too late. We never thought it would be us fighting this fight. We ask all of you, Mark’s Army, to stand with us and beside us as we fight for Mark and every other family and child whose life is forever altered by cancer. |