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!

April 5, 2026 - Update on Lawson’s Journey for his 4th Birthday

Lawson is now 1 year off treatment for ATRT! We are thrilled to have made it this far! However, it has still been a hard year, despite being off treatment. Lawson has experienced severe side effects from the proton radiation that he finished right before his 3rd birthday. Just a couple months after finishing treatment, he experienced a major motor skill regression. We went from Lawson being SO CLOSE to walking independently again in PT, to suddenly no longer able to crawl, roll, or even sit himself up alone, in just a matter of days. He has spent the last year working so hard in PT, OT, and ST, working to regain skills he lost to radiation. He is also fortunate to have the opportunity for equine therapy as well!! It is slow going, but he’s regained much of his head control, trunk control, and had significant improvement in fine motor skills. He is currently wheelchair-bound on outings, but he loves his vantage point on life from his chair. He works so hard both at home in his gait-trainer and at PT, that we still hope he may one day regain his independent mobility in some form!

Despite his major regression, Lawson was able to successfully wean off TPN in the midst of all that, and have his central line removed. That was an exciting milestone! He now takes all his nourishment by mouth again, which is a huge accomplishment! Lawson has also continued to hold on to his smile, his laugh, and his winning personality! He finds things to enjoy about life, no matter how hard things are. His latest MRI showed no tumor regrowth, and we are praying for another stable scan next time… always counting down to the next MRI. We are so thankful for the miracles we’ve seen in Lawson’s life and the fact that he is alive, but we are always praying for the next miracle… another clear scan and the restoration of lost motor skills!
 

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