Written by Jaiden’s family
Jaiden is an amazing, caring, fun, sweet 9-year-old little boy. On April 20th of 2024 (at the age of just 8 years old) Jaiden’s dad took him to the children’s hospital of Columbia after having terrible headaches and eye twitching/blurring, along with some limpness on the left side of his body. The onset of symptoms was rapid & within a days’ time, he could no longer walk without assistance. An MRI on April 22nd revealed that Jaiden has a tumor on his brain stem. On April 25th Jaiden had surgery so that a biopsy could be done on the tumor to determine what exactly they were dealing with. On May 1st, his family was given the news that no family should ever have to hear. Jaiden was officially diagnosed with Midline DIPG High Grade 4.
Diffuse intrinsic pontine glioma (DIPG) is a rare and aggressive brain tumor that affects about 300 children a year in the United States. There is currently no cure for this type of childhood cancer.
The decision was made to move Jaiden to MUSC in Charleston, where he would undergo 7 weeks of intense radiation. The radiation would be daily, Monday through Friday. He was also started on very high doses of steroids. On May 3rd Jaiden set out for MUSC to begin his fight against the tumor that was already wreaking havoc on his poor little body. Jaiden showed shear courage & determination as he went through the daily rounds of radiation without sedation. His head was in a mask (Spiderman of course) that was hooked to the table so he could not move. Jaiden was away from home, away from family, away from friends & missing out on all the normal fun summer stuff kids like to do. Yet he never complained. Even on the days when he did not feel good, he still found the strength to smile & be his family’s loving little boy.
On June 21st, Jaiden got to ring the bell as he conquered his radiation like the little hero that he is. He was finally able to come back home to his family, friends, and most importantly his 3 little sisters and 3 brothers that absolutely adore him. Although he still did not have good balance or coordination & the high doses of steroids had caused extreme swelling of his poor little body, he was able to join in & enjoy a little bit of summer fun before he started back to school as a big 4th grader on August 9th. Due to his limited mobility, Jaiden was in a wheel chair but made the best of every single day.
Fast forward to November 5th, Jaiden had a post radiation MRI to check the status of the tumor. The MRI revealed that the tumor had not grown & remained stable. Since Jaiden had been having extreme pain in his legs & back causing him to not be able to walk the previous couple weeks, they did an additional MRI of his pelvic area. The MRI came back clear. He was put on pain medication to help with his discomfort. On November 10th after watching Jaiden decline from the pain he was in, his family took him back to the Children’s hospital ER. He was literally crying out from the pain. Tests were started, including x-rays of his back. He was admitted into the hospital & started on morphine to try to get his pain under control. The doctors decided that they would do an MRI of his back the next morning. On November 11th, Jaiden had another MRI, this time of his spine. By that evening the family had been given the news – the cancer was now in his spine.
The decision was again made for him to be transferred back to MUSC to undergo sedated radiation to his spine. He was started back on steroids & his pain is being managed with morphine & tramadol. On November 14th, he was transported via ambulance from the children’s hospital here in Columbia back to MUSC. The next day, the doctors explained that Jaiden has what they call leptomeningeal spread, also known as leptomeningeal metastases. This is where the cancer cells have spread to the thin tissue layers covering the brain, and spinal cord. Leptomeningeal metastases are difficult to treat & have a very poor prognosis. With treatment, overall survival is approximately 2-4 months. If left untreated, the approximate time from diagnosis to death is about 4-6 weeks. The doctors said there was not much more they could do for him. At this point, it is more about quality vs quantity of life, and soon he will begin receiving palliative care.
The hope is that Jaiden’s parents can enjoy every single second left with their child without the worry of how they will be able to afford to lay him to rest when that time comes. Loved ones also hope to help bring more awareness to families of the midlands about this devastating disease that most people never hear about until it is affecting someone they love.
Since Jaiden’s diagnosis, another family (whom is also very dear to the family & is also from the midlands) received the DIPG diagnosis for their 6-year-old son. They are currently in Memphis, TN at St. Jude fighting their battle against this monster of a disease. No parent ever wants to hear their child’s name with the word cancer in the same sentence. However, life is truly humbling & these innocent children are fighting for just a little bit more “time.”
