Please Join Us To Support Louis the Brave Boylen

This GoFundMe is for Rob and Justine’s youngest 6-month-old son Louis Ivo Boylen.

Louis has been diagnosed with the very rare Li -Fraumeni Syndrome after having a Grade 3 Choroid Plexus Carcinoma brain tumor removed on the 26th February 2024. Louis has a big brother who is 2-years-old, Charles and a dog called Ivy.

Please take a moment to read our family’s story and pray for a miracle.

At 4.5 months old, Louis presented at Geraldton Hospital emergency with vomiting which was treated as gastro for 3 days until Justine pushed for an ultrasound on Louis's head. He had a fluid build up in his brain, known as hydrocephalus. Louis and Justine were flown to Perth with the Royal Flying Doctor Service to Perth Children’s Hospital (PCH).

Louis had a CT scan on arrival, hydrocephalus was confirmed and they also found a mass in Louis brain. Louis was in surgery within 3hrs of arriving at PCH where an external ventricular drain (EVD) was place to drain the excess brain fluid. Rob and Charles drove to Perth and arrived after Louis was successfully out of surgery. We then waited 4 days for his major operation to remove the mass, that was now identified as a Choroid Plexus Carcinoma (CPC).

The tumor required embolisation to be able to safely remove it without causing excessive bleeding. This was successuly done on the 23rd February.

On the 26th February, Dr Sharon Lee and her team performed a 9hour operation and were able to get a full resection of Louis brain tumor - they were able to remove every . last . bit . The tumor was then analysed and found to be a Grade 3 Choroid Plexus Carcinoma, a very rare, aggressive kind of tumor. The last time this type or tumor was seen in Perth was 10 years ago.

Genetic testing showed the tumor contained the mutated TP53 gene, this means Louis's cells cannot recognise and kill mutated cancer cells within his body.

In the weeks that followed the surgery, Louis's recovery has not been easy. Louis has been in ICU battling infections, contracting Covid19, and having seizures. Louis's family have lived at the hospital and Ronald McDonald House since arrival to Perth.

Louis has since recovered well; in fact, he looks like any other beautiful 6-month-old boy, smiling, rolling over and communicating. He has quickly won the hearts of the hospital’s staff with his smile being called the ward flirt.

Futher genetic testing of the tumor lead to a final diagnosis of Li-Fraumeni Syndrome (LFS). It is a very rare mutation on the cancer suppressing gene TP53. People with LFS are more at risk of developing cancers, particularly young children. The news of the syndrome was absolutely devastating, alongside the news that Louis will 100% develop another type of cancer in his childhood. The rest of the family must now be tested to see if they too carry the same gene.

Treatment outcomes are grim for people with Louis's condition. There is very limited data on the tumor Louis has, the best treatments to give and survival rates. There are 3 published trials that include children with Louis's condition with one study showing 2 out of 4 children surviving to ages 5 and 8 before they developed another cancer, another study showed 1 out of 3 survived and is battling bone cancer and the third study had 0% survival.

We were given the options of mega chemotherapy that involved stem cell rescue after bone marrow is depleted or palliative care.

Life truly is so very precious. All you hold near and dear can be torn await in an instant. Looking back on the first 4.5 months we had together as a family since Louis was born were pure bliss, ignorance is bliss.

Rob and Justine decided to try. To try and give Louis a fighting chance and start mega chemotherapy.

The Oncologists at PCH will be giving Louis the most intense chemotherapy they can provide to a baby, in the hope of killing the cancer cells from the tumor that are in his body. The treatment protocol will be modified specifically for Louis, his rare condition and his rare cancer. Monitoring will be done every month to ensure the aggressive tumor is not starting to grow back. If the tumor returns during treatment, there is nothing more the medical community can do to help Louis.

The family had a week out of hospital before the 7–9-month chemotherapy protocol began. It warmed the families’ hearts to see Charles being a loving and caring big brother towards Louis and be 'normal' for a few days. The family even got to be reunited with Ivy, their dog who is having to live apart from her family.

 

Louis has started his treatment now and he will remain in hospital, with his Justine. Rob and Charles will be staying close by to visit. Louis will be very immunocompromised as he is a 6 month old baby so visitors and social outings for Charles are limited.

 There are a lot of unknowns and hurdles to overcome for Louis and his family. But we do know Louis is brave; he is a fighter, and he is loved. Louis and his family have been through a lot over the past few weeks, but it is encouraging and provides hope to see that Louis is still smiling, giggling, hitting his milestones, has his first tooth and he has even had his first taste of a banana. He is thriving now and has been so resilient, he is a true champion, but he has also begun his biggest battle for survival.

Rob and Justine are unable to work during Louis's treatment period, as he requies full time care in the hospital, and Charles also requies full time care. All funds raised will go towards Louis’s medical expenses and his families living expenses as the family has had to move 4hrs south, to Perth while Louis recieves treatment over the next 9 months. Living expenses includes food, fuel etc. It will also help cover essential ongoing bills that will occur for the family at their Geraldton residence eg, rates, water bills, power bills, gas bills, car repayments, mortgage repayments etc.

Having a GoFundMe will allow the family to focus their energy on their two beautiful boys during this incredibly hard time and not worry about finances over the next 9 months.

Your donation, no matter how small, will help make that difference.

We need a miracle, we need strength and we need hope for little Louis the Brave to overcome the terrible hand he has been dealt, to be able to stay with his family for as many years as possible and to live out his time with his family and friends experiencing pure joy and love.

If you want to follow Louis difficult journey we are doing our best to keep his instagram page updated Louis_the_brave_boylen

Thank you so much for taking your time to read our story, this has been the most heart breaking, traumatic and devastating time in our lives learning the news about Louis. We really appreciate your love, kindness, and support during this difficult time. Thank you for the bottom of our hearts. ❤️ We need some positive energy and some good news to come our way.

Please send love, light, and pray for a miracle for Louis☀️✨️

This GoFundMe is being organsied by Louis's Aunties Aimee and Brenda (Justine's sister).

All donations will be transferred directly into Justine and Robs bank account.