 Mila enjoys snuggling with Mark all throughout the day! 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.  Ali and Mark on the sofa. 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.  Mark loves when Uncle Chris and Aunt Lynn come to visit.  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.  Making crafts with Grandma Gail. This photo was 9/15/24 when Mark could still open one eye.  Bryan and Mark in his bedroom. 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.  Thankful for these great friends loving on our children! 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.  Jameson and Mark during fall break. 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.  Aunt Branda and Cousin Lindye visiting from Florida.  Nana and Papi at Mark's Baptism on 9/28/24.
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"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  Youth Bucks baseball team wearing Mark's Army wristbands at local tournament last weekend. 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.  Sweet friends decorated our front porch for fall! 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.  Blue & Orange ribbons were displayed around the neighborhood! 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.  So many blue & orange ribbons lined Pebble Creek Parkway and other streets! 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.  Prayer vigil at Pebble Creek Park filled with #MarksArmy 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.  Praying for all Mark's friends that are walking this journey with us. |
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