Damien's Journey with Brain Cancer

This is Tania. I am putting together a fundraiser for my husband, Damien, along with our two young kids, Olivia (7) and Samantha (9).

Damien is a long term brain tumor survivor, he was initially diagnosed with an Oligodendroglioma grade 3 back in June 2008. He had surgery, radiation and chemo (Temodar) and lived many good years. We got married, had 2 beautiful kids and were living a good life before his 1st recurrence in 2023. He had his 2nd brain surgery at Inova, which was a success and to keep up with treatment, we enrolled in a clinical trial at NIH - He was on 4 cycles of Nivolumab (immunotherapy) when the tumor came back in Nov 2023. To avoid another surgery this soon, we reached out to many hospitals who specialized in brain tumors - UCLA, Memorial Sloan, Johns Hopkins, Georgetown and Duke, to get second opinions and treatment options. Since we wanted a non surgical treatment option, we went with Duke for his cancer treatments. He was on treatment protocols recommended by Duke (Lomustine, Vorasidnib, Avastin) for months, however, none of them worked and they only made things worse for him with many side effects. His 3rd cycle of Avastin finally caused a hemorrhage in Feb 2025 resulting in a stroke. This caused his left side to not function properly, making him semi bedridden - things would never be the same again !!!

His life took a turn once he had his 3rd brain surgery in March 2025. He had complications of a CSF leak, which resulted in a bacterial meningitis infection. He had his 4th brain surgery to remove the infection and was told he had a 30% chance of living. He fought through the infection with months of antibiotics, he pulled through a septic shock episode and was in the neuro ICU for 45 days. But his brain was already damaged with multiple surgeries and infection. This caused him to get Hydrocephalus, requiring a left VP shunt. He was discharged from the hospital after 3 weeks, only to return back in 3 days, when the VP shunt stopped working as it was clogged - (Shunts usually last at least 6 months before failing, his failed in 3 weeks..!!). He was re-admitted as he was neuro-storming with the pressure buildup in the brain and had to get a second VP shunt to manage the Hydrocephalus. He was in the neuro-ICU for 51 days this time, we did not know if he would make it. The neuro team had already told us his brain is like a water balloon - it had no form and they didn't know if he will ever recover. But God was fighting our battles for us. Damien slowly recovered, he finally had his cranioplasty and was discharged from the hospital in Aug, to the skilled nursing facility.

At this point he had a PEG tube for feeding, as he couldn't swallow, he couldn't speak much but would understand what you were saying and responded with gestures. Miraculously, he did really well at the skilled nursing facility - from being completely bedridden, only on PEG tube feedings, he was able to transfer from the bed to the wheelchair, was able to stand for a few min, was able to take a few steps, was able to eat a whole meal and was slowly starting to improve. However he got another stroke in the skilled nursing facility and was re-admitted to the hospital. Thankfully that stroke was a TIA that resolved in a month. He finally came back home at the end of Oct, after being in and out of hospitals, in-patient rehabs and skilled nursing facilities for most of 2025.

Damien improved with at home PT, OT and speech. He did have 2 separate seizure episodes that led to more hospitalizations but he recovered from them as well. However, his last MRI scan showed tumor progression. So far Damien has had most of the standard of care treatments for a brain tumor, none of them worked but only made him worse. He cannot have radiation at this stage given the size and location of the tumor as it would cause major cognitive impairments. Surgery is not an option - he is done with his fair share of multiple brain surgeries.

At this point in our journey, we have decide to keep Damien at home, with at-home hospice care. Surrounded by the kids, me, our close friends, church members and some extended family, we hope he can find joyful moments to remember - even as he is slowly fading away. We do not know how many months we have with Damien, this disease has its own timeline and each patient is different. But we want to do as much as we can with the time we have left with him.

Being a full time caregiver to my husband, especially in these last few years, and managing our very young kids, and working full time (as we need the insurance in this country to pay for very expensive medical care !!!) it has been tough. But I realized it takes a village to care for your person - to help them in their journey, to never give up on them and to push forward in spite of all the trials that seem impossible.

Damien is a gentle, kind, loving dad and husband with a big beautiful smile. He was an excellent project manager and worked years in corporate business consulting, his co-workers loved his strong work ethic, his ever ready willingness to help no matter how busy he was, his dry yet funny sense of humor, his long hours helping manage release cycles, project meetings and IT tickets. Damien used to love to cook (we used to spend hours in the kitchen cooking delicious Indian food), he still loves to eat good food - all cuisines, he enjoys all sports but loves cricket, and he is a BELIEVER- he knows that God is still in control and He can still turn things around - all we have to do is believe!!

I want to thank all the friends and family, co-workers, church members, neighbors who have supported us and helped us in so many ways in our most difficult time.

The funds we raise from this gofundme will help provide the necessary care for Damien, help with medical bills not covered by our insurance, ongoing medical expenses, out-of-pocket costs for medications, treatments, and end-of-life care, help pay for much needed home aides/ custodial care to manage all activities of daily living (bathing, feeding, toileting - as my husband is completely bedridden at this time and needs full time care) and to help with other unmet financial needs for our young family during this very difficult phase in our lives.

Any donation, no matter the amount, will make a difference. If you are not able to give, please consider sharing this fundraiser with others who may want to help.

On behalf of Damien and our young family, thank you for your kindness, generosity, love, and all your prayers.

With much love and gratitude,

Damien, Tania, Samantha and Olivia

Personal posts about Damien's journey...