September 17, 2010 -
February 7, 2020
Diagnosis: CNS HGNET-BCOR Brain Tumor
The doctors kept telling me Chandler was having normal childhood aches and pains caused by growth spurts. Then it was everything from migraines to concussion. He was having horrid headaches that would come on so fast, along with nausea, loss of balance, exhaustion, vomiting, neck pain, muscle pain, and overall weakness.
Then before I knew it, he was being rushed to ICU and we were being told he had the worst tumor they had ever seen. This type of cancer had only been discovered two years before. There wasn't any info on it and no one knew how to treat it. The doctor told me if he had gone 3 more days, he wouldn't have made it.
Chandler has had a very rough road these last 5 months. He has had brain surgery, port placement, and 2 lumbar punctures. We relocated to Boston for 7 weeks of proton radiation and then his gallbladder completely failed. As a result, he had 2 surgeries at the same time ... Gall bladder removal and g-tube placement. He was scheduled to start a year of mostly inpatient ATRT chemo. He was the first one to receive this treatment for this type of cancer and the survival rate is very low.
Complications from the chemo caused Pancreatitis to develop and chemo treatment had to be suspended. Chandler lost nearly a third of his body weight. The g-tube wasn't working and he was in constant pain. Chandler was flown to Boston for surgery to remove a tumor from his abdomen. At the same time a
gj-tube was placed.
We are finally back home and chemo treatment has been resumed. He still gets very sick from the chemo, but has gained some weight and is doing better.
"We received Chandler's quilt on Friday. You all did an amazing job. We both love it. Thanks so much."