The Worst Six Words

If you are reading this, we already thank you for your support.

My mom and Lou were married on Feb 1, 2021. On Sept 30, 2021, just 241 days into their loving and happy marriage, Lou was taken to the hospital with severe headaches and some confusion with his words. Lou hardly ever had the sniffles. Always strong. Always healthy. Always so hard working. So, it was a crushing surprise when the ER doctor said the worst six words my mom would ever hear “Your husband has a brain tumor.”

Lou was taken to the hospital, having to undergo emergency neurosurgery to remove a 5cm tumor in his brain (left temporal craniotomy) - diagnosed as a Grade 4 Glioblastoma, a very aggressive form of brain cancer. If you talked to Lou, he would tell you, “I just want 30 years with my wife” – it didn’t matter if you were the maintenance guy or the chief neurosurgeon at Yale Hospital. He was like a broken record “I just want 30 years with my wife.”

Lou was home three days after his surgery. He was doing so well – he even insisted on power-washing the house! That is Lou. Always jumping in to help and doing everything so that my mom didn’t have to. He was always taking care of my mom. One month after his 1st craniotomy, Lou started his daily rounds of radiation and chemotherapy that required him to go to Smillow in Trumbull every day for treatment. My mom never missed a beat. She drove him every day. She sat by his side while he received his treatment – doing everything to keep upbeat that he would beat this ‘beast.’

In January 2022, Lou started his next round of treatment - another trial chemo infusion 3x weekly again at Smillow. Everything was going fairly well. However, at the time, Lou wasn’t expected to return to work until late 2022. Unfortunately, because of the long delay, he was let go from his job. Unfair yes. My mom even considered contacting an attorney to sue his employer but at the end of the day, my mom didn’t want to take away from Lou’s health. Her focus was always set on Lou to make sure that he was receiving the best care. My mom also works from home full-time. She has to finagle working at home late into the night, taking conference calls alongside his chemo chair, taking care of the house, the yard, the shopping, the bills, the pets – she mentally couldn’t add a lawsuit to her plate of responsibilities.

In April 2022, Lou started to decline. His speech was delayed, and he struggled to ‘find his words.’ The MRI showed the worst-case scenario, and once again, my mom had to hear the worse six words again – “Your husband’s brain tumor is back.” At first, his doctor wanted to try a new trial treatment – immunotherapy infusion; however, at his next MRI just two weeks later, it was apparent that Lou needed to have surgery immediately. The tumor had doubled in its size, and Lou’s cognitive abilities were on a steady decline.

On May 3, 2022, that night - the surgeon called and said to come to the hospital tomorrow morning to get prepped for surgery.

On May 4, 2022, that morning (before going to the hospital), my mom drove herself and Lou to make his funeral arrangements. Lou insisted on making his funeral arrangements so that my mom doesn’t have to deal with it ‘afterward’. That’s the kind of guy that Lou is – always thinking about my mom’s well-being - his way of still caring for her. My mom said that this would forever be the worse day of her life. She never imagined making funeral arrangements for her husband of barely 14 months. They should have been shopping for their upcoming annual camping trip; instead, they were making funeral arrangements.

On May 5, 2022, Lou underwent his 2nd craniotomy. That day was tough for my mom. It was the first time that she missed a significant event in our lives – it was my graduation from Salve Regina. She didn’t see me walk down the aisle to get my master’s diploma. Just one more thing that this tumor has stolen from her. But Lou did well. This time, they didn’t put his skull back; they used a wire mesh cover. It was a tough surgery, and recovery would take months, not weeks. Recovery has been a struggle. Lou is tired. He can’t help or do much, so everything falls to my mom. He can’t drive. He has massive headaches. He sleeps a lot but is still very tired. His speech never really came back to 100%, but he was able to communicate well. They were even able to spend their June weekend camping. Which made my mom very happy but also very sad as this will probably be their last camping trip together.

In June 2022, Lou started to use Novocure Optune (which is a cumbersome headpiece) and also started Avestin Chemo infusion. Unfortunately, this would be a short-lived treatment.

On July 15, 2022, after a very bad week of Lou being very sick and showing a significant decline, my mom took Lou to Yale ER. After another MRI, my mom once again – for the 3rd time – heard the worse six words ever “Your husband’s brain tumor is back” –this time, it is growing in a different location. THIS TIME SURGERY IS NOT AN OPTION. The new treatment of choice is 4 chemo pills to be taken with breakfast. As of today, this is his current treatment.

It’s been almost one year since this entire nightmare started. My mom and Lou used to travel everywhere and do everything together. They dreamed of moving to Vermont and starting a life of ‘less stress’ and ‘more quality time’ together – starting a garden, perhaps some chickens, maybe a horse. Definitely a barn. It’s been almost one year of mom taking care of all the bills. They had some savings, but that is really starting to get depleted. Now, they face a new challenge. Lou will start to require a home nurse, home physical therapy to gain some strength, and home speech therapy. Lou can barely speak and has had difficulty walking.

In addition to the health challenges, there was an issue with the insurance company, which delayed processing/paying his medical bills. Now that it’s been sorted out, the bills are starting to come in. My mom is the only one working and with the rising cost of everything – she is really stressed out about how to pay these medical bills. And soon, there will be an entirely new set of annual deductibles to pay.

Lou’s health is of our utmost importance, and the last thing we want is for my mom or Lou to worry over finances. As so, we have set up this GoFundMe to help cover bills and medical costs to relieve the burden on my mom and Lou so they can focus on what's most important right now. Our family continues to ask for your prayers and positive juju. And, if anyone would like to make a financial contribution of any kind, we will be forever grateful. Let's come together to uplift this financial burden, allowing the focus to be on creating joyful memories.

Thank you.

-Sami