Welcome to Jaden's Page
Jaden’s story and fight to live began before he was even born. I was 36 weeks pregnant when I went in for a routine OB check-up. An ultrasound was done that day to do one final check to make sure everything looked good before my C-section was scheduled. Unfortunately, that day turned dark quickly for me when the doctor informed me something was wrong with my baby's brain. The OB doctor was not sure exactly what was wrong. The only thing that the ultrasound could show her was that his brain appeared to be bleeding. I was sent for an emergency amniocentesis to see if Jaden’s lungs were developed enough to deliver him immediately. The results were back within 24 hours, and on March 19th, 2009, I was off to the hospital to deliver my beautiful baby boy, not knowing what to expect. Jaden had his first MRI within the first 24 hours of his life.
The next day the neurosurgeon came to my room and confirmed that Jaden had a huge tumor where his right front lobe should have developed. Jaden went into surgery for his first craniotomy when he was 4 days old. The tumor was so large it would have done more harm to Jaden to remove all of it at first due to how young Jaden was. Jaden stayed in the NICU for 2 weeks and the biopsy was sent off. We were finally sent home with a plan to do a CT scan every 2 weeks and an MRI every month. The objective was to give him time to get stronger and a little older before going back in to remove the rest of the tumor.
On Good Friday in 2009, we were called back into the surgeon’s office to get the biopsy results. That is when I realized that my life as his mother would never be the same. Not only was the tumor malignant, but it was one of the most aggressive brain tumors—GLIOBLASTOMA. It is rare to see this type of tumor in children and almost unheard of in newborns. It was extremely unique to see a baby born with this type of tumor. With the way this tumor was described to us, I did not think anyone on his medical team really thought he was going to have a fighting chance. In fact, Jaden was given less than a 15% chance of survival. We did not get far with our medical plan before we were back in the hospital. On Mother’s Day of 2009, when Jaden was barely 2 months old, we returned to the emergency room because he could not stop vomiting. That was when the fight got real!
The tumor had grown, causing Jaden to throw blood clots. He had also developed hydrocephalus. This was not only now a fight against the cancer, but problems the cancer was creating. Jaden spent 34 days in the hospital. During that time, he had several surgical procedures, 2 major surgeries to remove the rest of the tumor, and to have the shunt placed to correct the hydrocephalus. He fought everything that came his way. His weight dropped down to nearly 5 pounds when his was 2 months old. He had seizures and everything in between. We held our breath, hoping that he would not pass any more blood clots. That was a problem that we could not control. Finally, the day came that we could go home!
Jaden did 10 months of chemotherapy. Due to his age, he did not qualify for radiation treatment. Once a month, we did MRI scans with the results showing the tumor had not returned. Jaden got to his 2-year mark and still no tumor. He did have to have another surgery on his shunt and he also developed a chiari malformation. Due to the chemo treatments, his teeth that were developing were rotting as fast as they were coming in, so he has had to have a good bit of dental work. We continued MRI scans every 3 months for a year until Jaden graduated to every 6 months for the next several years. Eventually, we made it to the yearly MRI scans and still there was no return of the tumor. This was a true miracle and with each scan we held our breath. The cancer left damage in its path and Jaden developed hypothyroidism when he was 6 years old. As he began to get older, we realized he would have a major speech impairment and memory damage as well due to the brain trauma he endured. He has also been diagnosed this past year with moderate intellectual disability.
Jaden was not able to say his first words until he was 5 years old. Up until then he was only able to make sounds to communicate with us. Through his speech therapy, he has slowly improved his speech. Today he can carry on a conversation, but it is still in working progress. School is challenging due to not being able to retain what he is taught. He has come a long way from what was once thought to be a kid who may not walk, use one half of his body, or even speak.
Jaden had another surgery in 2015 to have another chiari malformation surgery. During that surgery, an extremely enlarged vein was found. This surgery became his longest and most challenging surgery. It was a little over 6 hours long and his surgeon stated after his surgery that this one was a close call due to the vein beginning to bleed out of control. By the grace of God there was another surgeon at the hospital that was called in to help get the bleeding under control. If there was not another neurosurgeon on staff that day, Jaden would not be here fighting and surviving. Yet, after cancer and all the problems it has left in its path, Jaden has a purpose and his story is about hope and miracles. Without his amazing medical team and GOD'S grace he would not be celebrating his 10th birthday and 10 years of cancer-free. He is our FIGHTER, SURVIVOR, AND HERO!
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