Noah is incredibly smart, generous, and fun. He is 7 and in the second grade. He does 3rd and 4th grade math and reads on a 4th grade level. He loves to read and is currently reading A Series of Unfortunate Events. Although he loves chapter books, he really gravitates toward non-fiction. He loves learning about animals- especially sea life and space. Recently he has taken an interest in geography and learning the countries and capitals.
In January of 2012, Noah was diagnosed with Retinoblastoma. In the time leading up to his diagnosis we noticed a white glow in his eye in low light situations. He has received three rounds of IntraArterial Chemotherapy (IAC). He was the first parient at Johns Hopkins to try IAC. Because of his age they had to write a protocol to include younger patients. The chemo damaged his eye so severely it had to be removed in Nov 2012.
Even though we are years out from treatment, his prosthetic requires about 4-5 visits per year. Noah often cries that he wishes people would stop asking what’s wrong with his eye. Cancer has left him with a lifelong struggle of being labeled as different or weird. Usually he handles it well, but in those vulnerable moments my sweet boy is so sad. Noah is a boy scout that is learning to love adventure. Our hope is that through this, he will build a strong core of friends so that he is more confident in himself.
Avree was born at 25 weeks weighing in at 1 pound 5 ounces. The doctors gave her a 1% chance to survive life and she did!! We thought we could never endure something so emotional and stressful ever again but December of 2015 Avree, who was only 8 months old, was diagnosed with Bilateral Retinoblastoma.
Bilateral Retinoblastoma is a cancer in both eyes. This cancer is VERY rare to be in both eyes. She has a rare gene mutation that allows tumors to grow in her body, meaning she will be at risk for cancer for the rest of her life. This has made us very scared and nervous for her future.
Her cancer was found because she had to have so many eye checks from being born so early. She had numerous surgeries every month along with chemotherapy for 6 months. She hated it! She lost her hair and always was threw up.
In May of 2016, we were faced with the decision to remove her left eye to eliminate the cancer spreading to other parts of her body. Having only one eye does not affect her at all. If you want to know the definition of STRONG, just take a look her beautiful little face.
For such a small little girl she has been through so much. She just always has a big smile on her face no matter what obstacles that are thrown her way. We will forever cherish every day with our miracle!
Nathalia is a really funny girl! She loves to dance, loves frozen, trolls, Disney. She’s very much involved with family and loves her new baby sister.
Nathalia was diagnosed at birth with bilateral retinoblastoma. She lost her right eye to cancer, and they saved her left eye. She also lost her hearing to the chemo.
She had two types of chemo. It is unknown as to what has caused her other disabilities. Nathalia has chromosome deletions that make her prone to other cancers, cognitive delay, hearing loss due to chemo as well as others. Nathalia misses school often due to the numerous doctors she sees and cancer check ups at the children’s hospital.
When Tyce was only 6 weeks old, my husband and I questioned his vision. He wouldn’t make eye contact when nursing, his eye movement wasn’t always aligned and he didn’t look at typical things that babies do – we chalked it up to immaturity of the eyes but a sick feeling in my gut remained.
In the very early morning of Monday September 14th (Tyce was just over 2 months old) as Tyce was nursing I pretended to poke his eyes rapidly to see if I could get any response. Anxiety struck me when Tyce didn’t blink or react in any manner when I did this to either eye (I later learned that he didn’t react with his good eye because he did not, nor will ever, have good depth perception 3 feet and closer). Later in the morning, as soon as the optometrist office opened, I phoned my mom (who works there) telling her I needed an appointment for Tyce. She told me that they were completely booked but could see me on Wednesday. Persistently I explained that it couldn’t wait, if only for my own sanity and peace of mind. Our optometrist, Dr Gatrell, squeezed us in at the end of the day and Michael took off the end of his work shift to be there with us. After dilating Tyce’s pupils, shining lights into his eyes and taking a photo of his retina she explained that there was a mass in his eye and that we were going over to see the ophthalmologist in town right away. At that point, nobody put a name to it but it was made clear we needed to be seen soon and the unsaid word that hung heavily in the air was cancer. In that moment I knew there was a sense of urgency as it was long past office hours and yet we were headed to see the specialist with Dr Gatrell. Dr Regan, the ophthalmologist, explained that retinoblastoma needed to be ruled out and that we shouldn’t be too surprised if we were in a bigger center like Calgary or Toronto the next day. It was the first that that cancer had been said and although the no diagnosis was made yet, it seemed a certainty to me.
We felt numb and struggled to make the phone calls to immediate family to let them know what was happening. We were drained, scared and nervous for the wait ahead. During the evening I think it all hit me and I fell apart. I felt like I couldn’t breathe, I could hardly stand, I sobbed and felt an overwhelming sense of grief. I don’t think I slept that night. The next day we flew with our 10 week old baby to Toronto and the day after that we got the heart wrenching, however much expected, confirmation that Tyce had well advanced retinoblastoma at Toronto SickKids Hospital. The doctors rated it a D on a scale from A-E.
Even if you know what’s coming, you’re never prepared for how it actually feels… However, the warmth and kindness in the way the doctors explained the diagnosis and treatment options helped to soften the blow of the devastating confirmation. The following day Tyce was scheduled for an MRI and enucleation.
The entire process moved very quickly which I was thankful for, however looking back I’m unsure if I was truly processing everything or if I was just living in survival mode. Taking Tyce down to the anesthetic room was THE hardest things I’ve had to do in my life. Handing him over to the team and walking away without him was utterly heartbreaking.
Meeting Tyce back in the recovery room was tough as well. I expected him to be completely asleep but he was moaning under his breath, and awake. His bandage was much larger than I expected, perhaps because he was so small. He attempted to breastfeed, however for the the next few days he needed antiemetics through his IV line to keep anything down. Once he began to keep his feeds the bandage was removed. We were discharged the next day and the only difficulty really was not getting angry with people’s stares. I didn’t blame them, my baby had a huge black eye, but I felt very protective and nervous going out, which lasted a few months.
That was almost 3 years ago… Tyce has been cancer free for nearly 3 years now and this makes my heart sing!
However, a few months back it was often a struggle to hear cliches like “everything happens for a reason” or “its all part of the plan”. Why was my tiny little angel chosen to walk such a difficult path? At times I feel so desperately sad for our boy, scared of what the future will hold for him, how he will cope, how life will be for him growing up. I am forced to remind myself that losing his eye saved his life and then I am able to find acceptance.
On numerous occasions I’ve heard retinoblastoma referred to as the “good” cancer to get. It has an incredibly good treatment plan with very high survival rates so I understand where this statement comes from but it’s kind of damaging too. It makes me feel that I shouldn’t be so deeply affected by my son’s diagnosis, which then leads to guilt about me trying to underplay the severity of Tyce’s diagnosis and treatment. I appreciate this is part and parcel of the emotions I’m dealing with but it’s been hard to make sense of it all at times.
No matter how good the outcome of an illness, if the road getting there is rocky then it’s ok to find it hard and I’m starting accepting that now. My anxiety gets the better of me at times. My head tells me everything will be okay as every test has pointed to positive outcomes, but at times my uneasy heart is full of fear. Tyce’s charisma, bravery and strength is the main reason I remain strong in hardships.
The trips for follow-up procedures in Toronto and Saskatoon include exams under anesthetic and prosthetic eye care. Tyce has been under anesthetic 15 times in total and has struggled with pre-operative anxiety and post-operative emergence delirium. Its never easy but he helps me persevere. I feel so incredibly blessed to have this tiny superhero call me mom!
It was an early Sunday morning and our family was preparing for church. My husband was in the shower and i was getting the kids ready. I had walked downstairs and was looking at our beautiful four month old baby boy. As i reached the bottom steps the light from our skylight had hit his eyes just right. I remember the feeling of my world crumbling and my heart being so so heavy.
As i rushed back upstairs and ran into the bathroom where my husband was showering, I just began bawling. I remember all I could do was blurt out “HE HAS IT!”. My poor husband must have had water in his ears or was just so relaxed from being in the shower, he couldn’t understand what I was saying and asked “What?! What are you talking about?”, franticly I said “He has it. He’s got Retinoblastoma.” My husband being the rock he is replied “He’s not ours but the Lord’s. It will be alright.”
I walked back downstairs and stared into our boys precious eyes and through sobs I told him “I’m going to be by your side through it all. I’m right here and we will get through this. I love you so much. Godis going to be with you through it all.”
August 2nd,2016, Auggie was diagnosed with Stage 4, Group D, Bilateral Retinoblastoma with complete retina detachment in his left eye. The doctor just kept repeating “He’s got real bad diseases.” We walked out the hospital that day with the most faith I have ever experienced in my entire life. We truly believed in the power of God and that no matter what was to come through all this it was His will.
Our sweet Auggie has bravely undergone 4 rounds systemic chemotherapy,4 rounds IAC, and 2 rounds IVC. Each treatment he handled so well and that just showed me that the good Lord was hearing our prayers over our man cub warrior. He has had two miraculous healing as well as relapsed twice.
After two years of fighting, he is now coming to what we are all hoping and praying for. REMISSION! This battle has brought our family through many obstacles other than just the cancer itself. After four months of his battle, our family walked into a financial spiral and had no choice but to leave our beautiful townhouse home and move into a 21 square foot 1990 Winnie RV. Our family lived in what we called The Hephalump for 9 dreadful months. Towards the end of our life in The Hephalump, our world became even more humbling as we neared divorce. My husband and I call that time in our marriage “Jonah and the Whale”. We are so blessed by what our son’s journey has done to our family. It has taught us what true faith, trust, and the true meaning of family.
Evie has been full of life since day one. She is truly the strongest person I know. During treatment if she ever got sick, she’d throw up one minute and be running around playing and smiling the next. Life in general makes her happy. She loves dancing, watching funny movies, riding horses, swimming, and of course anything and everything princess related!
Evie was diagnosed with Retinoblastoma in March of 2012. In the months prior to her diagnosis, her left eye was not tracking correctly. We took her to the pediatrician to address this concern at 2 months old but they shrugged it off saying that it’s normal for all babies and never performed a proper eye exam. Over the next month, I noticed a glow in her eyes in pictures and after covering her left eye vs right, I realized that she likely had no vision in her left eye. Upon diagnosis, she had a Grade E tumor with 90% of the retina detached.
Treatment was rough. Evie had her left eye enucleated at 5 months old followed by one round of chemo. Unfortunately, she was allergic to the very drug that was meant to save her life. During the beginning of each treatment, her entire body would turn bright red, swell, and she’d scream out in pain until they eventually stopped to administer IV Benedryl before starting up again. She is now required to wear safety glasses at all times to protect her remaining right eye.
Cancer has 100% changed our lives. Not only does it truly put into perspective how fragile and precious life is, but it also leaves scars we carry with us everyday, both physically and mentally. There is not a day that goes by that I don’t worry or think about cancer now. Anytime Evie is sick, gets a bruise, or becomes extra tired, the possibility of her cancer returning or a secondary cancer manifesting is always the first thing that comes to mind.
Through it all, Evie has shown strength, kindness, and infectious love. She is my hero!
