Jan 14, 2016 Latest post:
Apr 28, 2020
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. Our oldest son, Owen (age 7) was diagnosed with a brain tumor last week.
Owen had not been feeling well for the duration of Christmas vacation. He was experiencing headaches which ranged from mild (where he could play normally) to severe with vomiting where he was go lay down in the dark for some relief. Initially we did not think too much of it. Figured it was a virus that would pass. He tells us that he was never completely headache free during that 2 weeks. The Monday that school resumed, he felt terrible and so instead of school, he went to the pediatrician who admitted him to the local hospital for further testing. We were thinking this may be an infection due to an immunosuppressive medication he was taking for localized scleroderma (morphea) but certainly needed to rule out possibility of an abnormal growth in his brain.
He he was a trooper through getting IVs, blood draws, etc. He saw some of his favorite nurses who treated him like royalty (even let him fly a helicopter in the hospital!). He was given something to relieve his headache and the nausea through his IV which worked well. They wanted an MRI of his head and most adults require some sort of sedation to have his done. For kids, they only do sedation during daytime hours where the anesthesiologist is available. Since time was important, they wanted Owen to try the MRI unsedated and if it didn't work, we could try sedated in the morning. An MRI is very loud, you have to remain completely still, with your head in a very small space. Owen was scared but did not move through the entire process. The next morning, we were told he has a 2.5cm x 2.9 cm x 2.7cm peripheral enhancing mass in the posterior lateral right thalamus with mild right to left posterior midline shift.
That certainly explained his symptoms. We were recommended to see a pediatric neurosurgeon and since he is established at Duke for his localized scleroderma (morphea), it was felt the best go there. He (and I) were transported in a huge ambulance and Brian followed by car. We saw Dr. Fuchs who recommend a biopsy. To do this, Owen, needed an additional MRI where markers were placed on his skull in order to get a 3D map for the biopsy.
Again, this boy rocked the procedure and was as still as could be. To get the markers on his skull, it required shaving various patches of hair off all over his head. During this process, Owen reminded us of his desire for an "uncle Chris" haircut (ie nature's course plus shaved on the sides). So when he had his biopsy, his surgeon fulfilled this wish and finished shaving his head. For the biopsy, he only had a very small incision in the back of his scalp, and a little scar of his forehead from the pins holding his head still. The longest part was waiting to speak to the doctor after the procedure. He told us that this was not an abscess. He suspected this was a glioblastoma but we would be awaiting the finally pathology to be sure.
We met with the radiation oncologist who recommended radiation and the neuro-oncologist who told us she would call us with the pathology report and our plan would be dependent and the results. We met with the most wonderful young woman who is a child life therapist who helped us explain this to Owen. She explained that the mass in his head causing his headache was a group of sick cells called cancer and also called a brain tumor. She explained that get rid of the sick cells, he would be getting light therapy (radiation) and medication by mouth (chemotherapy). She explained the difference between the sick cells (cancer cells), fast growing cells (ie hair, mucous membranes), and regular cells (what makes you you). She had a tray where she let him place some alka seltzer (cancer cancer cells), some mentos (fast growing cells), and tums (regular cells). She let him mix up some "chemo" with water and food coloring and administer it to the tablets in the tray. When the alka seltzers began to fizz, she asked him what he noticed about the cancer cells. They are shrinking. And the fast growing cells? They are changing - the color is coming off. Like how you can lose your hair or have sores in your mouth. And what about the regular cells? They are the same. You are still you. But the cancer cells are not all the way gone. More "chemo" added and they were completely dissolved. So, the process takes time to work.
So we were discharged and went home for the weekend to wait. Did some fun things with the family. Back to school and work for a few days.
We got the call that the pathology showed glioblastoma multiforme. The main therapy is surgical (but he is not a candidate due to the fact the tumor is in the middle of the brain around sensitive structures). So, the recommendation is for 6 weeks of radiation on a M-F schedule with concurrent oral chemotherapy (Temodar). Then we will have a 6 week break and repeat an MRI to assess where we are. If things are going well, we will do a set number of cycles of oral chemotherapy and continue to monitor progress with scans. This is not done locally, so we have come to Duke for treatment.