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Baxter Lee Duddy
Baxter Lee Duddy was born September 27, 2010, in Fairhope, Al, to Zac and Brook (Blackmon) Duddy. Baxter was fearless and always had a BIG Smile on his face. He LOVED swimming, playing Hide and Seek, Cooking, Baking, watching YouTube kids, and shopping! Baxter loved other kids, especially babies, and never missed a chance to hold, kiss, or tickle them!
In March 2015, at four years old, Baxter came down with what we thought was a "stummy" bug, as he called them, but it was lingering longer than a normal one, so off to the pediatrician we went. He told us it was a gastrointestinal infection and to stay on top of fluids, rest, eat only the BRAT diet and prescribed him an anti-nausea medicine.
After a week, we went back to the pediatrician. This time, his doctor told me he had a sinus infection and that the post nasal drip was making him nauseous; he prescribed him an antibiotic and some more nausea medicine.
A week later, he still wasn't showing any signs of improvement, only more tiredness and vomiting, especially when waking up. I took him back to his pediatrician, who then said, well, it was a sinus infection that now had turned into a gastrointestinal infection.
He said to keep on the antibiotics and nausea medicine, and he would be back to normal in no time. A week later, I took Baxter back to the pediatrician and demanded blood work of any kind to try to rule out anything else. His doctor snarkily laughed at me and said he didn't understand why I would want to put him through that when it was just a bad sinus and gi infection but walked out, telling the nurse to make me happy. of course, we didn't want to put him through that, but something in my heart, my mother's intuition, was telling me that something was wrong. The nurse came in and took his labs, and a few minutes later, his doctor happily walked in and said that everything was perfect. And to give Baxter some time.
Two days later, after Baxter continued to worsen, his head was tilted, he was off-balance, and the headaches were getting worse. I sent my mom into the pediatrician's office so that maybe he would take her a little more seriously; she demanded to have the test done at the hospital, and he agreed and sent Baxter to Thomas Hospital in Fairhope, Al, to have more in-depth blood work. We rushed over there, happy we were finally going to get some answers as to why our four-year-old had been having horrible headaches, vomiting nonstop, sleeping constantly, and not eating.
That Thursday afternoon, the nurse with his pediatrician's office called and said that again, the blood work was perfect, stop all the antibiotics and that he would rebound soon. By Saturday, Baxter was completely off balance. We took him to my Uncle, the one and only Dr. Marvin Taylor, who has been retired for more than 20 years. He took one look at Bax, tested his reflexes, and said, "he has something in his brain. I am going to get him into a neurologist Monday," he made some phone calls and had us an appointment with Dr. Chalhub in Mobile for Monday at 1 pm. On Easter Sunday, Baxter's head was hurting so bad that he was sick every time he opened his eyes, and he could not stand up. Our hearts were breaking, he was hurting so bad, and we couldn't take the pain away. On Monday, Baxter woke up almost 100% himself; he didn't have a headache. He was laughing, talking, and eating. I remember calling my mom and saying maybe we were overreacting, maybe his little body was fighting a bad infection- I almost canceled the appointment.
Still, I decided it was best to go. We had barely made it into the room the nurse assigned Baxter when Dr. Chalhub rounded the corner. He stopped and looked at his nurse and said Women's and children's and tell them I have a patient coming over to for admittance, he is four years old, his name is Baxter Duddy" my heart dropped, and then I looked down at Baxter and realized he had his head titled again. We walked into the room, and Dr. Chalhub said that he couldn't say for sure what was in his brain but that there was something, and it was urgent that we figure out what. My mom and I loaded the boys up and headed straight to women's and children's at the University of South Alabama. Baxter was admitted and then sent down for a head CT scan. I was able to be in the room with him holding his hand, and at first, the nurses had smiles, but as I was watching them through the window, I see the first one's face drop and then heard the phone ring.
The male nurse walked in and said they need a few more images and that this time it would be with contrast to show them a little more. I remember everything he said because I kept repeating in my head that they were getting more images because there IS something there, there IS something in my baby's brain. Silent tears rolled down my face as I smiled at Baxter smiling back at me.
The male nurse told me we were in the best place for Baxter and that they would take great care of him. At 7:06 pm on April 6, 2015, as our family sat anxiously awaiting a doctor to enter at any time, the doctor walked into our room and asked everyone to step out. Zac and I stood there by the computer screen as they showed us this gray mass in the back of Baxter's brain.
They described it as the size of a grapefruit and that it had shifted his brain stem to the left, and that it was a miracle he was still alive. They immediately transferred him into the Pediatric Intensive Care Unit and said a neuro team was going over his case. After a night of no sleep and lots of questions and worry, the neurosurgeon arrived at 6:30 am.
We were thrown into the world of Childhood Cancer; our four-year-old son had a tumor at the base of his skull wrapped around his brainstem. Baxter underwent seven-hour emergency surgery to remove the tumor and have a drain placed for the excess spinal fluid built up. Bax did great through surgery and spent 15 days in the hospital doing physical and occupational therapy to learn to walk and swallow again; he did both!
We learned that the tumor was a grade 2 ependymoma, a rare brain tumor that does not respond to chemo, and the best chance is surgery and radiation. Baxter's postop MRI showed no evidence of disease. His treatment plan was 33 rounds of radiation to the tumor bed. Monday - Friday for six weeks, he would receive focal radiation to the tumor location under anesthesia- Bax had a PICC line placed to make that easier, but it meant no swimming, so that was a bummer for him. Baxter finished radiation June we celebrated with a waterslide for the whole family to enjoy 19, 2015. We thought Baxter had it beat; he had GREAT odds. We just wanted to keep living life as a "normal" family.
Fifteen months later, in July 2016, this ugly beast reared its head with two new tumors in his brain and 1 in his spine; it was then we knew that we were in for the long run and were going to have to fight with everything we have to keep our Boy. He had surgery to remove one of the brain tumors, the other was to hard to get to during surgery, and the spinal tumor on August 3, 2016, he was home just three days later, and went to Kindergarten on the FIRST day of school, August 23!
He didn't get to go to Kindergarten long because he started the Phase 1 IDO trial in Atlanta on September 6, 2016; Baxter began to the trial drug indoximod and then had 29 cranial spinal (full brain and spine) radiation treatments, he finished radiation on October 24 and started the chemo portion on November 1. We were able to come home the next day. Bax handled it all fairly well, but right after Christmas, he came down with a cold so we went back to Atlanta to go see his doctor. Once we got there he had spiked a temperature and because he was on chemo his counts were zero so he was admitted to the hospital with rhinovirus, a common cold for us. after a week long stay, they went ahead and did his routine MRI while he was still admitted, the tumor had not really changed much at all, if anything it was just a tiny bit smaller.
We took that as a win and celebrated New Year's Eve in the hospital with the good news! By this point, his chemo was decided to be reduced to half and after multiple transfusions and a week and a half stay, Baxter was able to come home! for the next few months, life was somewhat back to normal, Baxter was getting stronger, taking his trial medicine every day like a champ, and his hair was growing. Life was Good. Then God Blessed us with our sweet Cole Thomas, on July 27, 2017, a year and a day to the date we found out Baxter's cancer had returned.🙌🏼
Baxter had stable scans for roughly 16 months; he attended first grade going all day just about every day up until March when the tumor DOUBLED in size. Our team in Atlanta did not recommend surgery and they did not have options for him. Baxter had zero symptoms, he was your average seven-year-old, going to school every day, running, playing baseball, and doing great.
He just had a brain tumor. I immediately sent his scans to the best pediatric neurosurgeon in the United States, Dr. Fredrick Boop in Memphis, TN. I asked my brain tumor groups for his direct email and sent them to him. Dr. Boop called me not even 30 minutes later and said he would do the surgery. Dr. Boop had already reached out to the lead trial director that Baxter had been on in Augusta, Dr. Johnson, and he agreed to keep Bax on the trial. We then packed up and headed to Memphis Tn. for LeBonheur Children Hospital. Our community once again rallied around us and helped us through one of the roughest times. Our 7-year-old went into his 3rd Brain surgery, on March 28, 2018, on our 9th wedding anniversary.
The one thing that makes Dr. Boop amazing at what he does is at LeBoneur they have an intraoperative MRI, meaning during surgery they can do a MRI to see any remaining tumor. When Dr. Boop thought he was finished removing the tumor they put bax through the MRI and saw a little sliver left so they went back in and got it out. after eight hours Dr. Boop came out to tell us he had removed ALL of the tumors and that Baxter had done great during surgery. Most of the tumor was arachnoid scaring and tumor mixed together, it had adhered to most of Baxter's main cranial nerves so the next few hours were critical, but he thought he would do fine. We were able to go back and see him and he was sleeping, breathing on his own, he sounded a little hoarse but he was breathing on his own. Around 3 am Baxter's oxygen became critical and they had to reintubate him.
There was so much swelling from the surgery that the cranial nerves that control his breathing, swallowing, and facial movements were paralyzed. Baxter remained on the ventilator for three days and was finally able to be extubated. Baxter struggled to remain on room air and swallowing so he had a feeding tube placed in his nose, and was on different types of oxygen machines. He was unable to walk on his own so we used a wheel chair to get him around once he was feeling up to it. On April 19, he had surgery to have a GTube placed for apermant feeding tube. After a 21 day stay in the neuro ICU, only complicated more by his incision leaking and meningitis in his spinal fluid, and 13 days on the Neuro Floor, He finally came home April 25, 2018, with a suction machine and an oxygen machine.
On May 21, Pilots for Christ flew us to Augusta, Ga, so Baxter could start back on the Phase 1 IDO Trial in Augusta, Ga. he finished his 3rd round of radiation on June 19, 3 years to the day he rang the bell the first time! Baxter had an MRI on June 25 that showed some enhancements, but for the most part, stability, so Pilots for Christ flew us back home on June 26!
Baxter took 2 Immunotherapy pills every day 2xs a Day, and chemo for five days every month. He had MRIs every eight weeks, and with every MRI, the areas of concern either disappeared or remained the same, if not a little better. We were over the moon. In October, we enjoyed Baxter's Make-A-Wish trip to Disney, and while there, he never had to use his g-tube. He had regained most of his swallowing! Every month he seemed to be stronger and healthier, and we made the most of every day. Then February 2019, I noticed his smile looked a little different. I pushed it aside, thinking my mind was playing tricks because when I smiled big at him, he smiled bigger back at me, and his smile was there, but a few days later, I noticed it again, only this time it was more noticeable, and Zac saw it too.
We immediately called his doctor in Augusta, the next day, Pilots for Christ had us there, and that Friday morning, February 22 at 7 am, Baxter a brain and spine MRI. For some reason, Bax was tough to wake up this time, normally you can't leave while a patient is still out of it, but since we would still be in the hospital under his doctor's care, they released him to go to his office. Even the long walk didn't wake Baxter up. Zac carried him the entire way, and once in the room, he continued to snore in daddy's arms.
My parents never missed an appointment, the same for that day. Zac, my mom, dad, Cole, and I sat waiting for his doctor to come in while Baxter was sleeping peacefully. After an agonizing wait, the door opened, and dr. J walked in. I could tell by his eyes it wasn't at all what we had hoped. Dr. J peaked at Bax and said, "I'm really happy he is sleeping for this," and we all just started crying. The tumor had again doubled in size, and there were new enhancements in both his brain and spine. The six of us, zac, my parents, Dr. J, his nurse Robin, and I, had the conversation that I had been dreading, the one that makes you realize that this wasn't going to stop. Dr. J did offer us more time; he contacted the Radiation Oncologist and sent in new medicines to the pharmacy to help alleviate some of Baxter's symptoms until we had a game plan. Thankfully the Radiation Oncologist agreed to another small dose of radiation to try and slow the growth of the tumor with the help of the trial drug he was on. we knew it wouldn't be his cure, but it could give us more time.
We came home, packed our things, and headed back to Augusta for Baxter's fourth and final round of radiation. This time his radiation team painted his mask-like SpiderMan and gave him a ceiling tile to paint anything he wanted to hang in their area. He chose his SupermanB and his handprints. On his last day of radiation, when we walked into the building, they surprised us by putting his ceiling tile right at the entrance of the treatment room, in honor of Baxter's Smile and his Strength. he only had 21 radiation sessions this time with the majority being to a new spinal tumor that had enhanced on the MRI. It was bittersweet telling our team at the Radiation Center goodbye on Baxter's last day. They loved Baxter as one of their own, and our family too. They helped us get through his treatment by taking the absolute best care of him and making sure he knew just how big of a superhero he was! Baxter started a new combination of chemos with harsher side effects, and we headed back home. Once home Baxter seemed to be getting a little better but still had facial paralysis and some left-sided weakness. After the second week of his new chemo, he peed blood. We took him to the local ER to have his labs checked, and unfortunately, they came back severely low and needed both blood and platelet transfusion. There was also some sort of infection somewhere, but they weren't sure where.
Baxter was transferred by ambulance to Sacred Heart in Pensacola to be admitted. Once there, he had his transfusions, and they started him on IV antibiotics, and they started testing for different viruses. On day five, and still no answers, but Baxter was getting better, we decided to bring him home, this was against the Sacred Heart team's decision, but we knew it was the right one. Baxter's first day home, he had a bad 'stummy,' but he had his grandma here with him, so he was still smiling. We went to Augusta for his monthly check-up and to do an MRI, but they decided against the MRI since he had just been in the hospital for a virus and his lungs were sounding a little crackly. Dr. J asked that we wait two weeks and restart chemo, giving his body just a little more time to recover. That next week we went to Montana/Idaho/Wyoming for my brother's wedding, and while it was beautiful and we had a great time, it showed us just how weak Baxter was.
We decided to stop chemo. We could no longer put Baxter through that when there was not much of a chance that it was fighting the tumor. While on our trip, Baxter lost his ability to swallow, and he had a hard time breathing, so as soon as we got home, he was back to using his suction machine and gtube. On our flight out to Montana, one of our flight attendants saw Baxter and came to me and first said a prayer, then gave me her name and number, on a piece of paper, told me her story, and then she told me to look into fenbendazole. Of course, I did. I ordered it while we were in Idaho, and we started him on it as soon as it came in.
I believe it gave us more time because he seemed to get better for a few weeks, or at least he was stable for a few weeks, and then it went fast. It is all such a blur, but I know one day he couldn't get up off the floor, he was building something with McLain and Cole, and Bax needed to go to the bathroom, and he couldn't make his legs work. I begged for him to get up. I told him over and over, yes, you can. I didn't want to accept what was happening to my eight-year-old. From that day forward, I carried him everywhere. We had to patch his right eye because the facial paralysis left his eye open, causing him constant conjunctivitis (pinkeye). On July 8, Zac and I had a phone call with Dr. J, and we decided to stop treatment and bring in hospice. Zac stayed home from work, and my parents moved in with us, and we made every day the best we could, even though we all knew that the end was near. Our hospice team was exceptional.
They were indeed a lifesaver, handling all of Baxter's medical needs from home, getting him new and better equipment, and making sure he was comfortable. While also making sure we knew we were loved. Baxter declined fast; he was unable to swallow, talk, or walk. He only had control of his right hand. A friend brought over an electric wheelchair, and Baxter smiled his BIG SMILE because he could get around by himself for the first time in a month. He followed his brothers around the yard and up and down the driveway. Then on August 5, we put Baxter in it, and he couldn't move the gear shifter with his right hand, and he looked at me and started crying. We all cried. Baxter could no longer control his hand.
His lungs had filled with fluid from aspirating, and he was struggling. On Friday, August 9, Baxter had a choking episode, and we thought we had lost him, but he wasn't ready to give up, we got him back, and our entire family stayed at the house that night. At 4:30 am on August 10, Baxter began transitioning to Heaven. His breathing was erratic, and he was gasping. Our family hugged him, kissed him, talked to him, telling him how proud of him we were. We let him know that he was going somewhere to play and to be free from all of the pain and that he would ALWAYS be with us. At 7:13 on Saturday, August 10, Baxter took his final breath in our arms.
We started the BaxStrong Foundation to help other families fighting childhood cancer. Baxter LOVED getting packages in the mail and all of the goodies he received; he would get so excited when the mail lady would pull up to the house because he just knew there was something for him. He once took one of his goodie jars to school for show and tell; it was something that lifted his spirits when he needed it most.
When Baxter met a little girl fighting Ependymoma, he had us go to the store to get her a present; he wanted to show her the same love that our community had given him over the years. In honor of him, we send Baxter's Smile Box full of kids' crafts & toys to help put a Smile on those sweet, Brave faces, to keep them busy while in the hospital and traveling to and from. Each box is packed with Love and Hope for each child and family. It is an honor to connect with these families and to share Baxter's story, Smile, & Love with families all over the country.
