Baxter was born on Monday, September 27, 2010 at 4:09 pm. He weighed 7 lbs and 5 oz and was 20.5 in long. He was healthy and perfect! He was a healthy infant/toddler, never had an ear infection, tummy bugs were rare, and he would make it through cold and flu season with maybe catching one runny nose a season, lasting a few short days. The only doctor appointments we went to were his Well Baby Visits! That all changed on Friday, March 7, 2015. That was the first time he complained of his tummy hurting.
On Saturday March 8th, SunSouth, our local John Deere store, had open house and they had a jump obstacle course for kids and my boys were immediately jumping and running around. After about 30 minutes Bax came up to me and laid down at my feet in the grass and said his tummy hurt again, so I picked him up and we walked towards the car to leave and he got sick. He got sick a few more times, but we made it home and he rested and woke up later Saturday afternoon and was back to running and playing. That Monday, McLain, our 4 year old little boy, woke up with a tummy bug and then Bax woke up sick again. By Wednesday both boys were back to normal, being boys running and playing. However on that following Sunday, Bax woke up that morning sick and then slept ALL DAY and when he was awake he said his head hurt. I called his pediatrician and we went in on that same Monday morning. They said he had a G.I. Infection and a Sinus infection, gave him an antibiotic and some nausea medicine and sent us on our way. After 2 days and no change we made another trip and was told he didn’t have a G.I. Infection, just a sinus infection that was draining into his tummy making him sick, (he had ZERO cold/flu/sinus infection symptoms- ZERO Fever) so a different antibiotic and more nausea medicine and then they sent us on our way. Over the month of March he would have good days and bad days, and by bad days I mean, he would wake up sick and then by that afternoon be fine! So we made ANOTHER appointment, and was told to give the antibiotics a few days to kick in, two days later I quit giving him the antibiotics, because he was only getting worse. He was getting worse, becoming lethargic, constant head pain, and just not himself, all of the symptoms had been there, except for him being lethargic- that scared me! I took him back to the doctor on Monday March 31st and asked for blood work to be done and that’s when they did their ‘in house panel of blood work’ and it was all “perfect” and that’s when I was told there was nothing wrong with him and that his body was just taking longer to kick the virus. Thursday April 3, Bax woke up with his head slightly tilted and sick again. So my mom took him to back to the doctor and she asked for a referral to get more blood work done and after watching him walk, his pediatrician finally agreed and sent us to another doctor. When we got there Bax was lethargic and completely out of it. We did the blood work and they sent us home. His pediatrician called late that afternoon and said the blood work was once again PERFECT, that they think they “over antibioticed” him, so to quit all medicines and he would be fine by Monday. Hangs up. That was it. Little did he know I had quit the antibiotics a week ago and was questioning his diagnosis.
We went and saw a family member, who immediately knew something wasn’t right and tested Bax’s reflexes and that’s when we knew something was in his brain. He then put us in touch with Dr. Chalhub and made us an appointment for that Monday.
Sunday April 5, was Easter and Bax wasn’t good, he could hardly walk, his head hurt horribly, he wasn’t talking and you could just tell he was in pain. That Monday, April 6, 2015 at 1:00 pm, as Dr. Chalhub was walking into the room to meet us and he told his nurse to call Childrens and start the admitting process. At 1:08 we were out the door and on our way to the hospital. It took 1 glance at Baxter for Dr. Chalhub to know that he had a tumor, cyst, or abscess in his brain. We were lucky to get there when we did. They did CT scans around 5 and around 8:30 two doctors walked into Bax’s room and showed us the CT images. As they were pulling them up they were explaining to us that they did NOT know if it was operable, but that the NeuroTeam was meeting and deciding the best treatment and that Bax was being transferred to the PICU, the Pediatric Intensive Care Unit. That’s when they showed us the CT scan and we saw the large mass in the back of our 4 year old’s brain. Not a G.I. Infection. Not a Sinus Infection. Not over antibiotics. A large mass in the back of his brain on, and wrapped around, his brain stem, that they did not know if was operable or not.
Bax was then escorted to the PICU and a nurse walked Zac and I into a waiting room and sat us down, then she went on to explain how the PICU works and what to expect. An agonizing 45 minutes later at 10:15 pm, we were finally able to go back to his corner PICU room and my God was my heart broken and my soul crushed. He had lines hooked everywhere, monitoring his brain, his heart, his breathing, anything vital, it was being monitored. He was laying there awake and scared, he didn’t feel good so he was cooperating completely, but you could tell he wanted so bad for daddy or me to hold him, and we couldn’t. Longest. Night. Of. Our. Lives.
After a night of NO sleep, at 6:30 am, Dr. Scott, Baxter’s neurosurgeon, came into the room. He explained how scary Baxter’s situation was and how vital it was that he have surgery right away to remove as much of the tumor as possible and to place an EVD (a drain to remove Cranial Spinal Fluid that had built up as a result of the tumor). Baxter was rushed into the MRI and then into surgery at 7:30 that morning. After roughly 7 hours at 5 o’clock that afternoon, Dr. Scott met with us after Surgery and told us that he was able to remove 95% of the tumor and that Bax was in recovery & doing well. He said he thought the tumor was cancerous and that it would require radiation, but pathology wouldn’t be back for at least a week. Bax spent 7 days in the PICU and recovered great!
That following Wednesday we finally received the pathology results and it showed it was an Ependymoma Grade 2, his spine was clear along with the lumbar puncture and the MRI of his Brain showed NO RESIDUAL DISEASE, best case scenario 80% survival rate! Standard protocol treatment is radiation, Bax had a Picc line placed so he could be sedated for radiation every day. He started radiation May 5 and rang the end of treatment bell on June 19th! He had his first post treatment MRI August 4, 2014 and it was clear!
Dr. Scott said he would be following us and that Bax would have MRIs every 3 months for 2 years, 4 months for 1 year, 6 months for 2 years and once he hit the 5 year he would go to yearly MRIs! He scanned again December 22nd and we celebrated Christmas with CLEAR scans! He scanned on his Surgery Anniversary, April 7th, both brain and spine and we celebrated CLEAR scans for both!
On July 26, 2016 Bax did his first Brain MRI with and without contrast awake with only one little movement at the very end of the scan. We were so stinking proud of him! We then went and had lunch and shopped until our afternoon appointment with Dr. Scott at 1:30. At 2:30 Dr. Scott finally walked into the room and looked at me and asked if I was okay; I wasn’t, these scans make us crazy, even when you know in your heart that there is nothing there you can’t help but be scared. Every bone in your body hurts, it’s an ache I can’t explain, I can only hope you never have to experience it. I responded that I was a little hot and he said he was too and then he looked me and then Zac in they eyes and told us there were TWO Spots. I looked at my mom who was holding McLain and she was already crying, Zac had tears falling down his cheeks, and Bax was staring at me and I was staring at Dr. Scott and then I put a smile on my face and looked at Bax and said “that’s okay, your going to take them out and we’re going to kick cancer again.” I then asked to see the spots and we went into his office and he showed us all of Baxter’s scans, and sure enough they weren’t there in April, they had grown sometime over the 3 months, one in the original tumor location, and one wrapped in nerves and blood vessels going to the Brain stem- inoperable.
We then met with Dr. Yan, radiation oncologist, to discuss treatment and made plans to start after 3 weeks after surgery. But first a spine MRI was ordered, just to make sure it hadn’t spread, which we were POSITIVE it had NOT! On August 1 he had his spine MRI and as he was in the machine I watched the technician answer the phone, then the nurse shrugged her head and my heart sank. After panic and almost being admitted Dr. Scott released us and called us on our way home to explain what had happened. He was in surgery when he got a call from the radiologist who was watching Bax’s scans as he was in the scanner, who was in a completely different area of the hospital and not in front of Bax. This doctor had seen the tumor, a large tumor from c7 to t6 that should by all means be causing issues but Bax is a kid and kids are RESILIENT and he had ZERO signs or symptoms of having a tumor in his brain or his spine. The doctor was wanting him admitted and by first glance of the tumor so did Dr. Scott, but once his PA got to us and saw Bax & that he was up and walking, talking, and moving all around we were free to go home.
Surgery was scheduled for that Wednesday, August 3rd, at 7:30 to remove the spinal tumor and as much out of the brain as possible. We got to the hospital at 5:30 and surgery started at 8! Finally at 6pm Dr. Scott came out into the waiting room and said he was able to get the spinal tumor completely and the one brain tumor, but the other was just in to many critical structures and the morbidity would be to much and that radiation would help take care of that remaining area. Bax spent 1 night in the PICU and 2 nights on the floor and Saturday morning had a full Brain and Spine MRI, that showed only the small tumor remaining, and we were released to go home.
We originally planned to stay home and focal radiate the tumor locations only, with a possible oral or IV chemo as well, but when we went for radiation simulation and then for his planning MRI we learned he would be receiving full Cranial Spinal Radiation and that this was much more aggressive then we thought. Dr. Yan called me while Bax was in the MRI and said he couldn’t radiate Bax and that we needed to go elsewhere for treatment. That’s also when we were told that the tumor that was still in Bax’s brain wasn’t an Ependymoma and that they were NOT worried about it.
We left the hospital that day with two sets of disk in hand and went straight to FedEx the disk to Orlando and Atlanta. After talking with several different Ependymoma researchers we decided on Georgia’s IDO inhibitor trial.
On September 1, 2016 our family packed up and relocated to be closer to the hospital in Georgia to start the process of enrolling in the clinical trial and on September 2nd Bax had a full day of CTs, Radiation planning & simulation, EKG, & Labs and at 2:00 pm we signed his paperwork to start the trial. We also learned that the tumor left in his brain is actually an Ependymoma and active, it had grown from the MRIs that were taken 3 weeks apart. On September 6th he started taking the IDO inhibitor and on September 13th he started Day 1 of 30 Cranial Spinal Radiation.
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