At 10 years old, despite being born with G6PD (a glucose-6-phosphate dehydrogenase deficiency), Sean had been generally healthy with no notable complications and no other notable medical issues. Sean was a kind, academically strong student who loved star wars, legos, video games, soccer and playing the piano and the trombone. This all changed at his routine annual check up on April 4, 2017. At this appointment, it was discovered that during the year since his last appointment, Sean had drastically lost weight. As is common with a lot of kids his age, we, as his parents, had figured he was just a picky eater. However, in response to the doctor’s concern, we consulted a nutritionist.
We worked with the nutritionist and followed her advice as well as the food plan she created. After few months, not only did Sean not gain weight, he actually continued to lose weight and he was continuing to have less and less energy. Knowing about his diagnosis of G6PD, we began to wonder if he was experiencing hemolysis (the rupture or destruction of red blood cells that can occur with G6PD) or if there was another internal issue that was negatively affecting his level of energy and his appetite. So we returned to the pediatrician and asked for a blood work.
When the blood work result was out, we got a call from his pediatrician’s office asking us to bring Sean in the clinic ASAP. In the clinic, that’s when we were told by his pediatrician that blood work came back with abnormalities and they diagnosed him with anemia. However, he’s pediatrician was worried that he might be bleeding somewhere inside, so he consulted a Hematologist at Children’s Hospital and was told that the blood work results did not look like a hematology issue. And, since we had a history of traveling overseas the year before, the doctors thought it might be a GI issue, we were then referred to see a GI doctor. So, in August, we saw the GI doctor who did additional blood work.
The additional testing revealed inflammatory markers in Sean’s blood indicating an ongoing problem, but we still could not easily discover a source or a cause. At this point, the doctors decided to admit Sean to Children’s hospital to further investigate the possibility of internal bleeding and to do additional testing. The GI doctors did a lower and upper endoscopy and the results came back normal. However, his blood work continued to show inflammatory markers and the doctors were very concerned that there may still be internal bleeding that they were struggling to locate.
After spending a few days and nights in Children’s, we were sent home. According to the GI testing, Sean was clear and his scans were normal. Now we were told that we should follow-up with the Hematology department at Children’s. During the follow-up with his hematologist, the inflammatory markers in the blood continued to show up and, in fact, were getting worse. However, when the hematologist examined his blood cells, the G6PD cells and cancer cells were intact. So, according to hematology, everything was normal and they could not answer the question of WHAT was causing Sean’s health issues. Sean was then referred to see the Rheumatologist at Children’s.
During the rheumatologist appointment testing also returned indicating that everything was normal. So we were told that we would have to go to the next specialist in line. However, one his Hematologist’s resident called me and told me that before we see the next specialist, they wanted to send Sean for a whole body MRI. The plan was to get the scan and then to all sit down and make a logical plan for the next step. The MRI was scheduled and done on October 22, 2017 at Children’s. Sean ended up not leaving the hospital for the next 14 days. It was during this MRI that his doctors found a large mass or tumor on the lining of Sean’s brain. Sean was admitted immediately and surgery for resection was done on October 24, 2017.
Initially, Sean’s brain tumor was thought to be meningioma; however, when the pathology report came back, it revealed that it was not meningioma but a rare brain tumor called Myxoid Mesenchymal Tumor on the brain which is a type of CNS Sarcoma. We were told he’s the first case for the area and there only few reported in the whole country. This put us on a long road to getting more information, but we could not focus on this until later.
While the family was in shock, Sean came through surgery wonderfully and his doctors were optimistic that they had removed the entire tumor. Due to the possible side effects, they decided to hold off on any further radiation or other treatment. The plan was to monitor his progress with additional MRI’s every few months to ensure that the tumor did not return or appear elsewhere in his body.
Sean was unable to move from his bed for several days. Due to this, the effects of the tumor, the surgery, and his low appetite and poor nutrition leading up to the surgery, Sean was very weak and needed to work on building up his strength and his coordination again. While still in the hospital, Sean started physical therapy and occupational therapy. These therapies continued after he was discharged.
Post surgery, Sean was doing well; he was gaining weight and he appeared so much healthier. His first MRI came back all clear. However, his March 5th MRI showed a reoccurrence of the tumors. The doctors believe that this is a regrowth of the original tumor. He is scheduled to undergo another surgery on April 17th, 2018. This surgery will be followed by 6 weeks of radiation treatment.
April 17, 2018
Sean is back in the hospital today and had another brain surgery, due to the reoccurrence of his tumor.
The fund raised at this point will help fund the family’s expenses related to Sean’s medical condition.
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