Rishaan

Rishaan is a mighty warrior with the brightest smile and best high fives! Born on December 28, 2020, he was crushing all his development milestones and spreading love to everyone around when he started random morning vomits just before his second birthday. We thought it to be a stomach bug that would resolve on its own, but it continued for a couple of weeks. He used to stay drowsy all day long and lost appetite completely as the morning vomits became more frequent. We rushed him to the ER several times during this period but were treated with general anti-emetics, which did not help at all. After a written note from a family physician who was alarmed at Rishaan’s condition one day, he was finally admitted at our local hospital (Jim Pattison Children’s Hospital) in Saskatoon, Canada, on February 4, 2023.

Over the next few days, several pediatricians examined Rishaan and prescribed blood and GI tests, all of which came out to be normal, but his symptoms continued. Pending some test results, we were discharged with a day-pass to go home. Being back at home and reuniting with his sister made Rishaan incredibly happy, and we hoped he might just recover soon, but the same night we noticed some walking/balance issues with him. The next morning when the pediatrician called to check his status, I mentioned this new symptom and she insisted that we rush back to the hospital for an emergency CT scan. Just hours later that day, on February 10, 2023, we had his diagnosis – there was a 7 cm mass in his right frontal lobe. Not in our wildest dreams we could have imagined a brain tumor in our baby’s little head. The same day, we met his team of neurosurgeon and neuro-oncologist who told us that the tumor is probably cancerous, and he needs to undergo a surgical resection before starting further treatment.

A few days later, Rishaan had his first craniotomy that lasted over 8 hours, but the neurosurgeons were to take the entire tumor out (gross total resection). After spending over ten more days in the hospital, our little boy was discharged. He had a slight left side weakness post the surgery and an NG tube to supplement oral intake. He gradually overcame the weakness in a couple of weeks and recovered well at home.

Nearly a month after his surgery, we received the tumor biopsy result – AT/RT. Our oncologist explained that a majority of children do not survive this disease and that we need to start chemotherapy right away. We were devastated, unsure of what lay ahead, and decided to take one day at a time. We were soon admitted to surgically place Rishaan’s central line (Broviac) and start chemotherapy as per COG 99703 (SickKids SoC protocol). He tolerated the first induction chemo cycle well with all the expected side effects – nausea, vomiting, neutropenia, and fever. In April 2023, however, Rishaan suffered a focal seizure, and we rushed him to ER where he was given rescue medications. He later developed acute pulmonary edema and spent a day in the PICU before being moved to a normal ward and then finally discharged. We were thankful to be back home.  The next two induction chemo cycles progressed smoothly, and we were referred to the Alberta Children’s Hospital (ACH) in Calgary for consolidation chemotherapy (high dose chemo) with autologous stem cell transplant.

Unfortunately, Rishaan’s MRI scan before starting consolidation showed disease relapse and the medical team recommended a second look surgery. We were in disbelief – how could his tumor return so soon? Rishaan again had a craniotomy which lasted for half a day and the surgeon was able to get a gross total resection. To our surprise, Rishaan bounced back within three days of the surgery, and we were able to begin high dose chemo in time. The chemo cycles with thiotepa and carboplatin this time were harder. They required lengthy hospital stays (three weeks), isolation mandates, baths every 6 hours (as thiotepa can cause chemical burns on the skin), and IV nutrition (TPN) due mucositis. Rishaan used to get his own stem cells in each cycle to help recover the blood counts as this kind of chemo essentially wipes out one’s bone marrow. We were able to complete the three cycles without any complications and whenever we got a break, we traveled to picturesque Banff as Rishaan loves to spend time outdoors.

We returned to Saskatoon at the end of September 2023 and Rishaan was overjoyed to spend time in his new home. His MRI scan post high dose chemo was clear but given his history of recurrences, he was recommended to go for focal proton radiation in Chicago, US. Life was slowly getting back to normal, and our sweet boy was enjoying the little things at home – watering plants, mowing grass with dad, picking up big sister from bus stop, going to park, and celebrating festivals. The happiness was, however, short lived as while waiting for proton radiation to begin, Rishaan experienced a seizure and the scan revealed that there was a significant recurrence (4-5 cm mass) in his tumor bed. Our medical team had almost given up at this point but after a second opinion, we decided to go for another resection surgery and follow it up with radiation as soon as possible.

Rishaan had his third craniotomy in early December 2023. He was quite sore after this one, unable to open one of his eyes for two days and it left us wondering if we made the right decision. Thankfully, he got back on his feet soon and the plan was to begin radiation in ten days to allow his surgical incision to heal. Since Canada doesn’t have a proton radiation center and going to the US would have taken time, we decided to go ahead with photon radiation to his tumor bed that could be done in our local hospital. Rishaan sailed through radiation therapy (RT) wherein he received 54 Gy in 30 sessions and was sedated each day. RT didn’t cause any major side effects, so we were able to celebrate Rishaan’s 3rdbirthday on December 28th – a milestone we weren’t sure he would meet since his diagnosis.

We finished RT at the end of January 2024. Soon after, we left for a week-long trip to Disney World in Florida, made possible by Make-A-Wish. It was the most amazing experience for Rishaan and our family, and we enjoyed every bit of it. After coming back, his post radiation scan showed no evidence of disease (we were so relieved!) yet we started a modified MEMMAT protocol as maintenance as recommended by Dr Annie Huang, SickKids. The protocol involved monthly intrathecal Topotecan and oral chemo drugs to be given at home which he tolerated reasonably well. Rishaan was recovering, running around like toddlers his age, and started OT and speech therapy. His NG tube came out and he started eating well, he also took his medications orally like a trooper. We were so incredibly proud of him and how far he had come since diagnosis. We had plans to enroll him in pre-school this September. However, our world was turned upside down one more time when he suffered a seizure on April 12, 2024, and his scan showed brain bleeding and tumor recurrence.

Rishaan’s tumor grew outside the radiation field this time. He has multiple spots, and there are essentially no options to treat him. There are no clinical trials in Canada, and the ones in the US have either not responded or do not take international patients. Our team has suggested trying Alisertib, and we hope that this might be the ‘miracle’ cure for Rishaan.