Lawson

Lawson is a happy, bubbly boy, who loves music, Bluey, magnatiles, legos, and cars! He has an infectious smile and laugh that lights up a room. He also can’t help dancing whenever he hears music! He has the sweetest personality that has always won him friends everywhere he goes. He has 4 older siblings, and he is the absolute apple of their eye! He has already joined them in our local community theatre, performing in his first musical at 9 months old. He already shined on stage, at such a young age! Lawson’s diagnosis has turned not just his own world upside-down, but also the world of his whole family, who loves him so very much.

In early June 2024, we thought Lawson had come down with a stomach bug. We quickly realized that this “stomach bug” wasn’t presenting like a normal stomach bug. On June 12, I took him to our local ER. After a quick look at his CT scan, he was transferred to Texas Children’s Hospital by ambulance. Upon arrival at Texas Children’s, in the wee hours of the morning on June 13, I heard the words no parent ever wants to hear. “There is a tumor in your son’s brain.” He was in his first surgery, (to address the hydrocephalus caused by the primary tumor), within an hour of arrival, and he received his official diagnosis of ATRT with metastases a few days later.

On June 18, Lawson underwent a 10-hour tumor resection surgery for his primary tumor. He has been through 6 surgeries now, including the tumor resection, brain shunt placement, port placement for chemo, etc. After a brief recovery period, he began his first round of chemo, following the ACNS0334 treatment protocol. As of this writing, September 2024, he has completed his 3 rounds of standard chemotherapy, and the next step will be his cycles of high dose chemotherapy with stem cell recovery. As of his most recent MRI, his tumors were responding to the treatment beautifully, but we unfortunately know things can change fast. We are praying for a miracle of complete healing in Lawson!!

We are 3 months into Lawson’s fight against ATRT, and it is unbelievable how much his body has gone through in just 3 months. Yet Lawson still has his smile, his laugh, and his sweet personality that is now winning him friends at the hospital instead of in “real life”. He has smiled, laughed, and danced his way through his first 3 months of this battle, spreading joy to everyone he encounters. He has done his “Bluey dance” everywhere from PICU to surgery recovery areas, and even while actively receiving chemo! He cooperates for even the most difficult things, like port accessing, and he always has a smile and a wave for his medical care team, despite what they put him through. His strength to maintain his sweet personality throughout this journey is truly an inspiration. We pray he continues to hold on to his smile, his laugh, and his dance moves, and that he eventually beats the monster that is ATRT!!

April 5, 2025 - Update on Lawson’s Journey for his 3rd Birthday

Lawson completed his ACNS0334 treatment protocol 3 days before his 3rd birthday! He has been through 3 rounds of standard chemotherapy, followed by 3 rounds of high dose chemotherapy with stem cell recovery, and now 6 weeks of proton radiation. He rang the bell at MD Anderson for completing his radiation on April 2! When he was first diagnosed in June 2024, with significant metastases, we wondered if he would be here for his 3rd birthday. We are thrilled to be celebrating both his 3rd birthday and the completion of ACNS0334 in the same week!! We are so thankful for his whole medical team at Texas Children’s & his radiation team at MD Anderson for getting us to his 3rd birthday.

We know his tumors responded well to all his chemo. At the beginning of radiation his brain appeared to be tumor-free, and his spine had only a couple small stubborn spots remaining. We are anxiously awaiting his next MRI in May, to find out if radiation was effective on his last few spinal metastases.

While we wait for news from his next MRI, Lawson is working hard at PT, and we are hoping he will be walking again soon! He has already graduated from OT, which is exciting after everything he’s been through. He’s currently still dependent on TPN for nutrition. We are hoping that coming off treatment will help his appetite rebound, so that he can wean off TPN. His central line can be removed once he’s weaned off TPN, which would be an amazing milestone. Throughout everything, he has held on to his smile, his laugh, his winning personality, and his love of music & dancing! We are so thankful for his happy heart. We have seen God work many miracles in his life over the last 10 months, and now we are praying hard for clear MRIs!
 

You can follow the latest on Lawson’s fight against ATRT on his Facebook page: Lifting Up Lawson