My friend and colleague, Milan Mehta, has been working with me at PlayStation for 11 years. His then 12 year old healthy son Ronil was diagnosed in January 2016 with a very rare and aggressive form of Brain Cancer called DIPG that particularly targets only children. DIPG is inoperable and there is no cure. The prognosis for recovery is less than 1% and life expectancy is about 9 months from diagnosis.
Ronil has surprised doctors by his ability to fight this awful cancer when he was given only days to live. He has made it bravely through 2 strokes, a stroke-induced coma, radiation and brain surgery. When he came out of the coma, he could do nothing but blink his eyes. Ronnie worked very hard in extensive therapy and astonished everyone by regaining abilities like walking, talking and eating. This helped him create many precious memories with family and friends especially his parents and younger brother, Sahil.
The doctors in US have let Milan and his wife Manisha know that they have done all they can for Ronil and that his time is running out fast. In researching alternative options, Milan’s family were made aware of a treatment that could buy more time for Ronil. This treatment, Intra-Arterial Chemotherapy with Immunotherapy, is not yet available in the US, so the family is pursuing this option at a medical facility in Monterrey, Mexico since May, 2017.
This procedure is costing them around $20,000 for each treatment every month out of pocket and will continue for several months until his tumor is stable or in remission. Medical insurance will not pay for any of these treatments. Let them know they are not alone in this fight and help raise awareness for Childhood Cancer.
You can follow Ronil's journey on his Facebook page at-
Please donate and share the fundraising link within your network to help Ronil and his family enjoy more precious time together. Thanks in advance for supporting Ronil!
Today Ronil completed 30 months since diagnosis. These dates and milestones become more significant when your child was given only weeks to live upon diagnosis and when average survival is 9 months. Since two and a half years, when the doctors told us that Ronil has a terminal brain tumor, we have been devastated and it all seems so surreal. Only thing that makes sense in this broken world is Ronil’s unwavering spirit to fight his cancer bravely.
Ronil’s MRI done towards May end showed that the tumor has metastasized in the thalamus and his spine along with enhancement in the brain stem. This means that the tumor is no longer stable and in progression. Our doctors in USA gave us the option to do re radiation again but before that would happen, in June, Ronil got sick with an infection and respiratory distress and had to be hospitalized. After that episode we have decided not to pursue radiation due to the high risk of side effects however we are continuing with alternate medicines. His clinical condition has declined more and nowadays he is very sleepy and tired all the time. We feel very helpless and sad to see him like this but this is the reality of this ruthless disease. We don’t know what will happen in the coming weeks but we’ll continue to spend our time together and make the best of it as he always wanted us to.
Since the last update we had a few fun days, like in May, when Ronnie’s friend Andey came over before going to her prom and as she was all dressed up, Ronnie changed into his formal clothes too to take pictures. This is as close as we’ll get to experience him going to prom.
In June, Ronil went to his high school just before end of school year to see his friends, teachers and staff who have been so supportive throughout. So proud of him that despite all the challenges he managed to get an A+ grade in his freshman Science class. We also stopped by his middle school and met folks there which was emotional for everyone.
We were in the hospital on Father's Day but were grateful to be together. Milan means the world to us and one of the gifts the kids gave him was a hat with a fitting title “Best Dad Ever”. We celebrated Father's Day properly later after Ronil's discharge from hospital.
I want to express my appreciation for Sahil for being such an amazing brother and son throughout this time. He hangs out with his big bro, helps his dad and comforts his mom. Even though he is ten years old he has shown maturity and understanding to constantly adapt given the circumstances. Sahil has been very passionate about drawing since he was a toddler and has been going to an art academy for the past 3 years. To show Ronnie how much he means to him and loves him, Sahil drew a portrait of him. Ronil was very surprised and his eyes lit up with happiness upon seeing his sketch. Sahil did get help and guidance from his art instructor as obviously this was a very difficult painting for him but Sahil poured his heart out in this drawing and aptly captured Ronil’s personality of a courageous, happy, loving, selfless boy.
I also want to thank my parents who are always there for us; helping and supporting us through these difficult times. Its been hard for them too but they give us strength. Love you, mom and dad!
We have gratitude towards the DIPG community as a whole and especially to our Monterrey, Mexico families whom we have come to know and love. They been have instrumental in this whole journey and we rejoice with them when a kid shows improvement, we grieve when any kid passes away and are here to help new families that walk this harsh road.
Thanks to our family, friends, colleagues and supporters who took the time to do the lemon face challenge to spread much needed awareness for this deadly brain cancer DIPG. We also value all your words of encouragement, love, prayers, blessings, support, positive vibes and thoughts for our sweet son.
Today, May 17th is recognized as “DIPG Awareness Day” in USA and it falls during Brain Tumor awareness month to raise pubic awareness for this deadliest of childhood brain cancer. DIPG only gets about 4% of the total 4% federal funding allocated for all of pediatric cancer research put together. People not affected by childhood cancer need to take a stand to make a difference and not look away. You could talk to others about the horrors of DIPG, the struggles faced by the kids and their families, the lack of federal funding towards finding a cure, donate to charities helping families and research, write to your representatives, get involved in fund raisers, share Brave Ronil page on FB or change your profile picture and above all empathize what would you do if this happened to your loved one.
It has been one year since May ‘17 that we have been going to Mexico for treatments when the doctors in US told us he was in progression and that they couldn’t do anything for him. We strongly believe that had we not intervened to try and put brakes on this aggressive disease by doing these treatments in Mexico, this tumor would have continued to grow and we wouldn’t be here at 28 months post diagnosis.
Ronil’s MRI in April showed a new tumor spot near the thalamus and inflammation in the brain stem. This was devastating news for us as till now his tumor had been stable but we did suspect this as towards the end of April we could see symptoms develop.
Ronil’s 15th treatment has been one of the hardest so far. We almost didn’t make it to Mexico as had to go to the ER from the airport as he was having aspiration problems. He recovered from it and we flew out to Monterrey after a couple days. Right after his treatment on May 4th, Ronil started getting tonic spasms and had to stay in the ICU for 4 more days to treat that before we could come back home. Overall we see some decline in his clinical status and he more sleepy and tired. His vision and hearing are also somewhat compromised and so communication gets difficult. We hope that these symptoms get better over time with new treatment options and in the meanwhile we are continuing to cherish each and every moment with our brave DIPG warrior.
Life could change in a second so don’t take anything for granted and appreciate everything about your kids. Below is the GoFundMe and FB link if you could help or share.
Thanks for all for your love and support.
Since the last update, Ronil has had 2 more Intra arterial treatments and 1 immunotherapy. The IA and IM combo treatment done on January 9th went fine but after coming back home from Mexico he had to be admitted to the ICU as he came down with gastro infection. He recovered very soon from that and was able to celebrate and enjoy Sahil and Milan's birthdays. Ronil was glad to be home with friends and family after staying in Mexico for a month.
We returned back to Mexico last week to do PET scan studies which uses 3 different radio tracers to identify metabolic tumor activity. The PET scan's colored images and values showed that the tumor is not in progression, it's stable, not spread anywhere outside of the brainstem and that the tumor activity is very low. Large parts of the tumor are now a dead mass but in and around the active tumor there is still some inflammation, neurosis and hypoxia.
Ronil did his 13th IA treatment on 13th Feb which went ok but did stay an extra day at the hospital to fully recover. Based on the PET scan results the doctors have recommended to have the treatments every 6 weeks now as they don't want to over-treat, giving the brain more time to heal so that his clinical status also improves which still remains the same.
We know that DIPG is a terrible disease, extremely aggressive and quite clever at mutating. We know that things can change at any time but we also know that Ronnie, with his warrior spirit and never give up attitude is fighting on.
Follow Ronil's journey on Facebook at-
Ronil had not gone to school a lot in Jan and Feb to avoid the widespread flu but started going again in March. His friends welcomed him back and even made him a banner to show their love and how much they had missed him at school. We are proud of Ronil that he also participated in the school walkout by thousands of students across United States to demand stricter gun laws and was part tribute and part protest.
NFL’s Indianapolis Colts running back Robert Turbin returned to his alma mater, Irvington High School, which is Ronil’s high school to host his yearly charity basketball game. This year he also got along Seattle Seahawks quarterback Russell Wilson with him. Ronil was excited to be at the game and meet them both. They talked with Ronnie and encouraged him to keep fighting on. Robert Turbin even posted their pic with Sahil and Ronil on his Instagram.
Ronil started using a speech device which uses eye gaze technology for communication. He can now go online to some of his favorite sites like YouTube by himself. It’s a great tool but Ronnie still needs more practice to get accustomed to it.
Soon it was time to fly back to Monterrey for Ronil’s 14th treatment on March 23rd which went fine and we are back home. This was the longest we had waited in between treatments. It was good to be home for 5 weeks but also nerve racking as to what the MRI would show. This time we did the MRI in San Francisco and their report showed a little enhancement in the pons but the Mexico doctors think its inflammation and are not concerned.
There is no change in his clinical state and he is dependent on us for everything. But the fact is that we rely on him emotionally. He is the one who never feels scared or nervous as to what will happen. He doesn’t feel sorry for himself but lives each day selflessly. He comforts his cry-baby mom all the time and one smile from him or one look of “I’m okay, it’s all going to be fine”, is all it takes to keep us going. The remarkable thing Ronil has showed us through this journey is that no matter the challenges, the fights, the disappointments, it is your choice how you respond to it all as that’s the only thing in our control. So we might as well do it happily and with love in our hearts.
Thanks for following Ronil's journey and for all your love, encouragement and by sharing his story you help create awareness for Childhood Cancer so desperately needed for all of our kids.