Life Through Sam’s Eyes:
How our blind son helped us see.
Saturday January 27, 2018
Jim Valavanis shares his experience of first-time parenting, being the father of a child with rare eye cancer, the road to healing and the hope-filled book that emerged from his family’s journey.
A New Baby and a Shocking Diagnosis
Retinoblastoma… What does this word mean and how could our beautiful baby boy have been born with it? Those were the first two questions my wife Lisa and I asked ourselves when we were told that our son Samuel was diagnosed with the disease at just 12 weeks of age.
As first time parents it was gut wrenching to be told your newborn baby had detached retinas in his eyes, due to an aggressive rare eye cancer which could ultimately lead to blindness. We were shattered by the news and felt totally alone and like we were the only ones going through this horrible ordeal.
We had no idea how we were going to deal with this insurmountable challenge laying before us, but we knew from very early on that we would do everything we possibly could to give Sam a fighting chance of having some vision
Sam holds a copy of the book Life Through Sam’s Eyes, to which he contributed a chapter.
The Long Treatment Journey Begins
After speaking to the medical professionals at the hospital and getting our heads around the condition, they came up with a treatment plan. We agreed to it because we felt confident they had his best interests at heart.
The course of treatment was immediate and intense. Within ten days of being diagnosed he had a Hickman line inserted into his tiny chest and started chemotherapy. This was not an easy decision for us to make as there were many side effects and risks associated with this treatment.
Along with the chemotherapy, Sam endured multiple treatments, therapies and procedures over the first 4 ½ years of his life. These included cryotherapy, laser therapy, radiation therapy (radiotherapy), radioactive plaques and chemo injections directly into the eye. We have subjected Sam to so many invasive and non-invasive treatments and procedures, not to mention general anaesthetics. We hope this hasn’t had a negative impact on his long term health and wellbeing.
During the treatment, we were living day to day and could only think about the next check-up or appointment to follow. There were many highs and lows during this period, which felt like it was never ending. It would have been very different to tackle without the incredible support network we had around us. We had amazing people we could lean on whenever we needed them.
Sam recovers from surgery to remove his eye.
Life Changing Decisions
After years of treatment, pain and suffering, the tough decision had to be made to remove (enucleate) Sam’s left eye. The doctors said there were too many active tumours in there, which were very close to the optic nerve. He was only three years old when this happened and, as you can imagine, it was a traumatic experience for him and us. The right eye had been stable and the tumours dormant for around fourteen months and he had enough peripheral vision to be mobile. But in an unfair twist, when his left eye was removed, the right eye started growing active tumours again.
The stress and anxiety we experienced around this time was extreme and really tested us as a couple. We did everything we possibly could to save this eye and his sight, but after 1½ years of even more intense treatments, we had to succumb to the inevitable. Sam’s right eye had been significantly damaged from all the treatment, and once again the tumours were deemed to be too close to the optic nerve – a direct path to the brain.
In the end we had no choice and would rather have our son alive and without sight than six feet under. This was by far the hardest decision of our lives. We felt extreme guilt for a very long time that we had made our son blind and changed the course of his life forever. These feelings and thoughts have eased with time, and we are grateful he adapted to life without sight as well as he did. The fact that he was only 4½ at the time also made a huge difference and shows the true resilience of children. An adult would have struggled with this massive life changing challenge.
The day after the second eye-removal surgery that saved Sam’s life and took his sight forever.
The Road to Healing
Our new normal was life with a blind child. We had to be there for Sam now more than ever. We experienced so many emotions in the first year. Everything from anger to guilt, through to anxiety and depression, just to name a few.
We discovered that men and women deal with things very differently. My wife, Lisa, was able to talk about her feelings and emotions more openly and honestly.
I withdrew from society and tried to deal with the situation on my own and hide my emotions. After all, I was a man and had to remain strong and stoic for my family. This went on for years and I ended up in a very dark place, until I took the brave step of seeking help and shared my experience about how I was really feeling.
A big part of my recovery came about from writing things down on paper. Once we were both able to open up and share our experiences, the ideas for a book started to flow. We thought this would have been a great resource to have by our side when we were going through everything. The book was then confirmed and materialised when a Publisher approached us after we spoke about our family’s journey at a convention… Luckily for us, he just happened to be in the room at the time!
Jim, Samuel, Lisa, Mitchell and Caitlin Valavanis enjoy a snowy adventure together.
Writing Life Through Sam’s Eyes
Writing the book took us a lot longer than we had originally planned, but we are very happy with the end result. We hope it will help those individuals, couples or families who have been faced with a life changing event or some kind of adversity. That our words will give them hope and inspiration, assurance that there is light at the end of the tunnel, even though it may not feel like it at the time. It is important to remain positive and surround yourself with a supportive network, because you can’t do it alone.
We would also like people to rethink and reprioritise what is really important to them and to not sweat the small stuff. After all, we are only here for a finite amount of time, and we should take every opportunity to live life to the fullest and truly be in the present moment.
Our book covers a number of topics and we talk about them from both my perspective and my wife’s perspective. Sam has also written his own chapter, recalling his experiences, which in some ways are different to ours. We include helpful information about retinoblastoma, with input from staff at the Royal Children’s Hospital, Melbourne (Australia).
We also discuss grief and ways of dealing with it, male depression, and keeping it together as a couple. We reflect on our time at the hospital, those who helped Sam see, some charity events we arranged and others we have been involved with. We share Sam’s amazing adventures and experiences, life lessons and the importance of living life to the fullest. Most importantly to us, we tell of how Sam has changed our lives in a positive way.
Jim. Samuel, Lisa, Mitchell and Caitlin Valavanis cherish family time and the daily gifts of life.
Embracing a Full Life Every Day
Sam has taught us so many life lessons over the journey and we are blessed and eternally grateful to still have him in our lives. He inspires us each and every day with his tenacity, curiosity and zest for life. We treat Sam as a ‘normal’ child and even though society has labelled him as disabled, we certainly don’t look at him that way. He is more than able to do so many things and have amazing experiences. He has a positive impact on everyone he meets and teaches them that life is more than having sight.
We could have looked at our situation very differently and played the victim, which would have taken us down another path. But it would not have served us or our son in his time of need. We are now in a very good place and I look forward to what the future holds for Sam and our family as we embrace life with open arms. We have learnt that life is fleeting and so fragile. It is so important to not take things for granted. Make the most of every opportunity!
Read Life Through Sam’s Eyes
Life Through Sam’s Eyes is available in Audio and eBook / Kindle formats, read by the authors. Search for “Life Through Sam’s Eyes” on iBooks (iTunes), Kobo, Amazon and Audible.
If you haven’t yet discovered the world of Audible, register today to get Life Through Sam’s Eyes for free, and access a wealth of narrated books. Google “Audible” for your country’s Audible website (.ca, .com, .com.au, .co.uk etc.).
About the Author
Jim Valavanis is an author, parent and inspirational public speaker on overcoming daunting adversities in family life. He shares how we can benefit and empower ourselves and others by changing negative expectations of just ‘surviving’ to ‘thriving’ in life’s challenges.
Jim is the International author of Life Through Sam’s Eyes – How our Blind Son Helped Us See. He has shared with many the moving and inspiring story of how his son, Sam, was diagnosed with retinoblastoma. How he and his wife, Lisa, overcame confronting and difficult circumstances, to become more resilient, create a positive environment and a compelling future for Sam and for the whole family.
Jim has been involved with many charitable organisations. He lives in Melbourne, Australia, with his wife Lisa and their 3 children, Samuel, Mitchell and Caitlin.