Help little Rishabh fight Brain Cancer(ETMR)

This little beautiful boy is Rishabh, my adorable 2.8 year old nephew - the only child to my younger brother Ram and his wife Aishwarya.

Their world came crashing in February 2021, when Rishabh was diagnosed with ETMR - one of the most aggressive malignant childhood brain tumours.

For the last five months, they’ve put in everything in their fight against this deadly disease. The treatment is long, arduous and financially exhausting.

So far, Rishabh has undergone 2 major brain surgeries, a tracheostomy, a gastrostomy, a central line placement surgery and 5 shunt related surgeries, 2 cycles of high dose chemotherapy and 32 cycles of Proton Radiation therapy.

The cumulative cost incurred so far has amounted to over $80,000 which have been managed through savings, insurance and contributions from friends and family. But the fight is far from over and so is the burden of finances for continued future treatment.

This fundraiser is to help them stay in the fight so that they can keep making the right decisions for Rishabh’s treatment without letting financial worries influence their will to keep going.

We're thankful to each one of you who is able to make a donation or able to spread the word and help this fundraiser. 

The following is the story in great detail in Ram‘s words.

Our little world.

My wife Aishwarya and I have had the most pleasant, content lives we could’ve asked for but it was only after Rishabh arrived did we realize the true meaning of joy. The joy that all other new parents would rave about, we felt that for real for the last 2.8 years.

For the chubby, squishy little dumpling that he was as an infant - the name Momo (dumpling) seemed like the perfect fit.

Aishwarya would spend hours every week learning new things about parenting and did everything to inculcate the best habits in him. And I tried my best to be the husband and father for everything that she needed support with.

Our best times came during the pandemic where work took a complete backseat and we had every minute every day to play with him and pamper him to bits. Our fondest memories are of him kissing his mom to wake her up and say “goo morni amma! Wakie wakie”. He’d say “Momo is helping amma” for the little things he’d do around the house. He’d get pretty mad if I went to brush my teeth without him. He’d spend hours in the window sitout of his playroom shuffling between books and toys while we trained him enough to be a chatterbox.

Something seemed wrong.

As he turned 2 in Oct 2020, we started noticing a remarkable change in his personality. He had suddenly begun to talk a lot. Frame sentences. Even sang along to some of his favorite songs. Each passing day he’d do something new, something more adorable and Aishwarya and I would endlessly feel thankful for how amazing the lockdown period has been for us.

Feb 10th 2021 - The first time we noticed something was not right. After having a running nose and sore throat for a couple of days, we saw that Momo wasn’t walking straight. He was losing balance and falling more often than he ever did. He was drooling a lot and would keep his head tilted slightly to the right.

We immediately took him to the doctor and after initial investigations didn’t reveal anything, we were referred for an MRI. By now the concern was getting serious, but we were hopeful that it wasn’t anything that some medicine couldn’t resolve.

The dagger in the heart.

On Feb 16, 2021 - We got the news that we wish no parent ever has to receive. Momo had a tumor in his brainstem - the most critical part of the brain that’s responsible for all vital functions. On the MRI, It showed up as a big bright jello the size of a small lemon. It was pressing against the left side of his brain and that explained the weakness on his right limbs.

Just the mention of the word ‘tumor’ brought the world crashing for us. It felt like a dagger was plunged into our hearts. We were still in the hospital, numb and unable to process what we had just learnt while we held the phone for Momo as he watched his favorite rhymes. He was amazed that the videos he used to watch on TV could be played on our phones too!

The next steps.

The conventional treatment plan for tumors is to remove them through surgery, send the tumor for a biopsy and prepare the treatment plan (chemotherapy/radiation/nothing) based on what the pathology report says.

(Picture from the night before the surgery)

Feb 19, 2021 - We elected a renowned neurosurgeon to operate on Rishabh and resect his tumor. It was a 6 hour long surgery and we waited anxiously. Post surgery, we were told that almost 60% of the tumor had been removed. Rishabh recovered quite well from this surgery and we were back home in 4 days. The biopsy report would come in another week and we waited nervously and prayed that it was a benign tumor.

 Feb 27, 2021 - Rishabh had the big C. The respite we had hoped for was denied. The pathology report indicated that he has a high grade glioma (misdiagnosed, but more on that later). WHO Grade IV. An aggressive tumor that proliferates very rapidly.

We were advised that the prognosis looks very bleak and despite best treatment efforts we’re only looking at 12-18 months of time with him. Now how were we - who dreamed of an entire lifetime with him - to take that.

 Let's beat this.

So what if the prognosis is bleak and statistics are against us?! How can Momo not be in the 5% of kids who beat this deadly disease. Miracles happen and our boy will be one.

With a lot of hope and courage, we vowed to give everything we have and bring Momo back to good health. We moved to Chennai to another hospital with a plan to start his radiation therapy and upon a repeat MRI (on Mar 8 - mere 17 days after the surgery), we learned two things.

The surgeons in Bangalore had lied to us. They hadn’t removed 60% of the tumor that they claimed to have. They had barely removed any. The tumor was looking exactly (a tad bit bigger) as it did before surgery.

The pathology report was incorrect. The tumor was not a high grade glioma but an equally aggressive and high grade tumor called ETMR. There were only less than 300 cases of this tumor around the world.

The tumor was obstructing the flow of CerebroSpinal Fluid (CSF) in his brain and causing the pressure to grow. He needed a surgery to place a VP Shunt in his brain that would aid the drainage of excess CSF.

Doctors in Chennai advised us to head to where our family homes were - Hyderabad and start off with the treatment : VP shunt surgery followed by High Dose Chemotherapy with stem cell transplant. The chemo was going to be as aggressive as we had feared but if it worked, we could put off radiation until Momo was a few months older.

 The dreaded chemo.

Mar 13, 2021 - Momo had his shunt surgery done and we waited for the sutures to heal before starting on chemotherapy.

Mar 23, 2021 - Pre-chemo MRI showed that the tumor wasn’t showing any signs of slowing down. It was now ~130% of its size.

From Mar 23 - Apr 26, Rishabh went through 2 extreme rounds of chemotherapy with some of the most potent drugs out there. We were aware of the toxic effects it would have on his body, but there was also hope that the tumor would be killed.

We spent weeks at the hospital as the effects started to show. We saw his appetite go down, he was vomiting often and his hair was all over his sheets. My eyes welled up as I picked the shaver to shave off his remaining hair and how Aishwarya held him tightly haunts me everyday.

By the last week of April, we saw him lose weight, his strength deteriorated, his swallowing and speaking abilities were almost gone and he was being fed through a tube. “It's the tumor”, the doctors said. It seems to be infiltrating further on his critical nerves. And unfortunately, they were right. Another MRI showed that the tumor was now almost twice in size and pressing hard against the surrounding parts of his brain.

On Apr 28th, He was rushed to the ICU as we monitored his heart rate fall. And while in the ICU, we were given the heart wrenching choice - stop treatment & take him into palliative care or try more chemo with no guarantee. We were told that there were no options left.

 How could that be! I wasn’t willing to give up. I felt strongly that if a genius surgeon could remove his tumor, then radiation will keep his cancer in remission and there are so many therapies that could keep the cancer from ever coming back.

 A new hope.

And like we had wished, there indeed was a genius neurosurgeon who convinced us that he could take out at least 80% of Momo’s tumor which was considered inoperable by several other neurosurgeons. He explained to Aishwarya and I that he’d do a maximal safe resection of the tumor. As soon as Rishabh’s condition in Hyderabad stabilized, we packed up and flew to Chennai.

 The Miracle.

May 8th 2021. Dr. Roopesh pulled off what he had promised. 15 minutes after the surgery, he showed us the before and after of the tumor on an MRI. The peach sized tumor was now almost gone and in its place was a dark void.

The setback.

On Jun 13, Rishabh had an emergency. After having a couple of fever spikes, he wasn’t waking up. We rushed to the ER. A CT scan showed that there was acute hydrocephalus in his brain as the shunt wasn’t draining the fluid well.

Shunts are known to be notorious for malfunctions. Many people with hydrocephalus have several shunt revisions till the doctors get the pressure in the brain right.

Each revision is a surgical procedure and Rishabh has had 5 of them in the 3 weeks. Aishwarya & I took turns during the day and night as he continued to stay in the CCU for 21 days. His condition stabilized on July 2nd and we were able to bring him home.

He’s now stable but the surgeries and prolonged inconsistencies with the pressure in his brain have had a significant impact on his sensorium.

However, his proton radiation therapy continued through the setback and the tumor has been stable. It hasn’t grown and the growth seems to have been arrested. In the coming weeks, the tumor is expected to shrink and we’re keeping our fingers crossed and hoping that Rishabh will be tumor free as the therapy’s effect continues in the coming weeks. :)

 The way ahead.

There’s no definitive answer as to how long or how many courses of treatment it will take to cure him. There could be more therapies, more surgeries, more hospital stays in the years to come. We’re giving it our everything and have pledged to leave no stone unturned, but there are so many stones to turn.

And with cancer, you’re only as equipped to fight it as much as your finances allow you to. And this fundraiser is specifically to fight that limitation. His treatment is expensive and we do not wish for it to limit our fight to save him.

So far, his treatments have cost us $80,000 for the surgeries, chemotherapy and proton radiation therapy, and several misc expenses like pharmacy bills, equipment, travel & stay. Our insurance funds are almost exhausted and we’re hitting the end of reserves on our personal funds.

My profession as a wedding photographer took a terrible hit with Covid-19 and just when we were hoping to recover and take on new assignments, this catastrophic development came upon us and to make matters worse, the second wave of COVID brought on more cancellations.

Between the loss of my income, my wife Aishwarya’s time off work, and unforeseen medical expenses, finances are getting tight. The funds raised through your generous donations will go towards the debt incurred so far, hospital bills, and other expenses required to maintain as much normalcy as possible.

Thank you once again for taking the time to read about our story. Thank you for the words of strength and encouragement. Thank you for donating generously and thank you for sharing the story.

 With a lot of love,

Rishabh‘s mom & Rishabh‘s dad.