Patient Story: Jonah

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Johan - a cranio warrior



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Story told by Rich, Jonah’s dad

Our 5-year-old boy, Jonah has a crainiopharyngioma. He had never been to a hospital prior to May 2021 when we discovered that he had a rare brain tumor. He was having difficulty with his vision, nausea in the mornings, dizziness, and fatigue. After struggling to get any help in our local hospital in Kitchener-Waterloo, Ontario, Canada, we ended up taking Jonah to Sick Kids hospital in Toronto on May 28th, 2021. Later that day we learned what was causing all of the issues. The doctors planned brain surgery for the next day.

Jonah had an Ommaya catheter procedure and it worked for a few aspirations and the tumor is now drained and no longer effective. His vision improved significantly after the surgery and he did not have other side effects.

Everything was great throughout the summer, but in September of 2021, he again started experiencing issues with his vision. We were advised that they will need to do a craniotomy to get access to the tumor and affected area to see what they can do with the least invasive approach to prevent any damage to the optic nerves that the tumor was surrounding. They ended up doing a craniotomy from his left eyebrow on September 22. It was successful and his vision improved.Thankfully, there were no other side effects after the procedure.

Just two weeks later, in early October 2021, Jonah again was experiencing difficulty with his vision. He could not count his fingers with his left eye. We were told to come to Sick Kids immediately. After another MRI they noted there was again pressure on his eyes and they advised us that they would need to do a more invasive procedure because at this point the tumor was in a critical area and now required immediate attention. Surgeons ended up removing 85-90% of the solid tumor through the same eyebrow craniotomy from weeks prior. Immediately after the procedure, Jonah was counting fingers with his left eye. Due to the complex area where the tumor was located, Jonah’s pituitary gland was compromised, meaning he now had diabetes insipidus (DI), adrenal insufficiency, and hypothyroidism. These are currently being managed with medications. Jonah’s vision in his left eye was also affected, and just a few weeks after the procedure, we noticed that his eye was slightly drifting. Jonah fortunately has his thirst mechanism intact. After a month’s long stay at the hospital, it was crucial to get Jonah to radiation treatment.

Unfortunately, Canada does currently does not have proton treatment facilities.Therefore, we were off to the University of Florida in Jacksonville for his treatment the day after being released from Sick Kids. We drove down from Canada, and made it in just 24 hours. Jonah had his first appointment to meet the team there and to get fit for his mask. The patient must sit absolutely still for throughout the treatment. Jonah went in for the mask fitting on Friday November 12, and the team came out after 30 minutes and told us that he couldn’t do it. This meant that they would have to do a procedure to add a port where they would need to use anesthesia each day for the next 6 weeks of his treatment. I asked the team to give us the weekend so we could try it again. On the following Monday, we went back to the hotel and setup a simulation of the treatment room with a sleeping bag, dark room, and got out the timer. We practieced several times that weekend. We went back on Monday, and within 20 minutes the team came out and said “he did it!!“We were so grateful for the doctors allowing us those extra few days to practice.

Jonah’s treatment started the following week. He started experiencing nausea and was lethargic. Unfortunately, one of the cysts was filling up and putting pressure on the third ventricle. They had to add a second Ommaya catheter to drain the fluid that was accumulating. He was released a few days later and we continued his treatment. He did great throughout, but needed daily naps. However, otherwise he felt great. He did have some hair loss due to the radiation but only thinning, not patches or total baldness.

After returning to Canada, we settled back in. In April of 2022, we all caught Covid. Jonah experienced a high fever and his first seizure. It was a really scary experience. We called 911 and he was taken to the emergency room. After a few days in the hospital he was released and everything was ok. However, two weeks later Jonah experienced another seizure that included lip smacking. We drive one hour to Sick Kids in Toronto where he experienced a large seizure. It was due to his sodium level being extremely low.

After this experience, we decided to start measuring his intake/ output and glucose levels to rule out everything possible other than sodium. Jonah had occasional small seizures afterwards every couple of weeks.

We relocated to Upstate New York in June of 2022 for work and Jonah’s medical needs. We feel that we have more leverage in the United States as opposed to Canada. For Jonah’s condition, this absolutely necessary.

In July of 2022 Jonah experienced small clusters of seizures. We took him to the hospital, and fortunately we captured a seizure with the EEG to confirm that it is Epilepsy. This can be managed with medications, and Jonah has been doing great since.

We planned a holiday vacation to Florida in December 2022, but one week before leaving Jonah was not feeling well. On December 9, 2022, Jonah had a long morning nap on the couch and after waking up to go to the bathroom, he tried to stand up and walk however he was unstable. He was also slurring his words. We took him to Golisanos Childrens Hospital in Rochester NY and they confirmed that Jonah had a stroke. After a few very stressful night, Jonah got through the worst of it and did not require further intervention as the swelling was manageable with medications and steroids. The reason for the stroke is still unknown and it’s possible that we will never know why his artery on the left side experienced beading causing the stroke. The doctors did an angiogram to look at the arteries in his brain and also released some anti inflammation medication to open the arteries where they were narrowed. It seemed to work as we noticed Jonah’s energy level was increased immediately after.

Jonah could still not move his right arm or leg, and was not speaking. A week later we were able to introduce some soft foods to ensure that he could swallow. Thankfully, he was ok and could eat on his own. On December 23, he was transferred to a rehabilitation hospital.

Today is February 1, 2023 and Jonah will walk out of the hospital on February 3, 2023. His left arm is getting better, and we are seeing some movement in his fingers. Jonah is also regaining his speech now and singing songs, just as he did previously performing concerts for the family. We’re so grateful to have Jonah coming home and we’re looking forward to getting back to out normal lives. Jonahs also looking forward to returning to Tae Kwon Do and riding his four wheeler.