We live in Connecticut, Ryder is 8.5 years old
Ryder has had medical concerns since he was 6 months old. It started out with obstructive sleep apnea and he had his tonsils and adenoids removed the day after is 1st birthday. He began seeing an ENT regularly with ear infections after that. Ryder was hitting all developmental milestones and was very intelligent. Ryder began struggling behaviorally at 3 and I was frequently getting notes from daycare.
By age 4 Ryder was seeing a behavioral therapist and was diagnosed with anxiety and ADHD. Ryder was very loud, disruptive, and always speaking in a peer or instructors face, did not respect boundaries, and was always touching others. During his kindergarten hearing test at school, Ryder failed in his left ear. We followed up with his pediatrician and were referred to an audiologist. Ryder was diagnosed with unilateral sensioneural hearing loss in his left ear and began wearing a hearing aid at age 5 in December 2019. After beginning wearing his hearing aid daily Ryder's behaviors seemed to calm down and appear less frequently. The therapist suggested that perhaps not being able to hear all conversation in a group setting (school) could have been the issue.
Fast-forward to August 2020 and Ryder is experiencing frequent migraines. He would lay down during recess, at home, the school nurse would call at least 3x per week to ask permission for tylenol. We had seen the pediatrician and they suggested an eye exam. On September 30th 2020 the Optometrist said that Ryder had swollen optic nerves and suggested a follow up in 6 months. The headaches continued and lasted longer. The pediatrician sent us to a pediatric neurologist on November 18th, 2020, Ryder then received a referral for a brain MRI.
The MRI took place December 1st 2020. In the middle of his sedated MRI they stopped the machine and came to my chair and informed me that they found something and they need to add a spine MRI right then with a spinal tap. I signed the paper and waited. After the MRI while in recovery waiting for Ryder to wake up I was informed that we were being admitted to the ICU and they needed to perform a craniotomy the next morning. Less than 2 hours later I met the surgeon who explained they found a large mass in his left lateral ventricle, and several brain lesions. Ryder's spine showed diffuse pial enhancement of his brain stem and upper cervical cord. The surgeon explained he wanted to biopsy and debulk the mass as much as he could. The craniotomy took place on December 2nd and Ryder was discharged on December 6th.
On December 11th we met with the surgeon and his team. We received the diagnosis of Diffuse leptomeningeal glioneuronal tumors. (Ryder's specifics: BRAF-KIAA1549 detected. Modest increase in gene Dosage on chromosome 7,8,10,11,12,18 suggests somatic gain of 1 chromosomal copy in tumor with admired normal tissue. Loss of heterozygosity secondary amplification in chromosomes 7 8 10,11,12,18q).
We then met our oncology team at Smillow Yale New Haven Hospital. They had discussed Ryder's case with Oncology at Memorial Sloan. They decided Ryder would have a port placed on January 11th, 2021 and begin treatment on the 14th. The plan was 52 weeks of combined carboplatin and vincristine. Ryder had an anaphylaxis reaction to nausea medication during his 1st treatment which lead to 1 of our many overnight stays. Ryder took well to treatment and then on Oct 7th, 2021 Ryder had an allergic reaction to carboplatin. He then took 3 weeks off from treatment and began to do desensitization to the chemo and get frequent small doses over an 8 hour period 1x per week. For 4 weeks. Ryder completed chemotherapy in February of 2022.
Naturally Ryder's anxiety has become even more of a struggle since his diagnosis. We also have seen behavioral changes when the tumors did start to decrease in size. Since completing chemotherapy his behavior has been changing again. He began getting migraines this March and began a migraine medication. They can not explain his current migraines and mood changes. He is still working with a therapist and has been recently diagnosed with PTSD and Autism which explains soooo much. Unfortunately things were overlooked and misread a few times because Ryder had so much occurring at once.
Some MRIs have shown some decrease in size of some tumors since completing treatment. The most recent MRI shows stability and Ryder's next MRI will be this September.
