Hello Everyone,
I know you may have come to know my blog as a place for all things fun, pretty and just generally up-beat! I want to put a disclaimer out there that for the next little while this is going to be more of a "journal" for me. A place to put all of my thoughts, experiences and emotions into words.
I hope that for any and all of you that are also going through hard times, and for those (very few) of you who may be fighting this same fight, perhaps you can find solace in knowing that you are not alone. I would like to also let everyone who has reached out to myself and my family in these past few days know that I am so truly thankful for each and every one of you! Your love and prayers are amazing and will be so needed in the difficult months to come.
Emilia Grace is a strong, beautiful little girl. She celebrated her first birthday in January 2018 and was the absolute picture of health! With a bright smile, and a big, bold and bubbly personality to match she truly is the light in every room she enters. To look at her you would never know that day by day her world has been changing... becoming dark.
Any first time parent knows one thing, everything is unknown. Being a parent is a HUGE learning curve and babies do not come with manuals. Emilia seemed to be developing perfectly, meeting all her milestones, talking, walking (a little hesitantly, but well within the expected time range), eating and showing plenty of interest in people and toys. It wasn't until about 15 months that my mother (MeMa) approached me and pointed out that Emilia's right eye would occasionally turn inward when she was focusing on something. I of course as Mom assured her that it was just a "lazy eye" but that coupled with a new found "out in space" look on her face raised some concerns that maybe she had poor vision. Both my siblings and I wear normal glasses so I knew it was likely that at some point Emilia too would need them, I just didn't really think it would be so soon.... but off to the eye doctor we went.
Thursday April 26, was a normal day for us. Breakfast, play time, errands and then an eye appointment before heading over to MeMa's so that I could head into work. I never ever expected the news I was about to receive. Our Optometrist was well adept at seeing young children, but from about 5mins into our appointment I got the distinct feeling that something was very wrong. He was wonderful in his dealing with us giving us no reason to panic, and also being honest about his limited experience with anything that wasn't "normal". This is not something any mother wants to hear... "your child is abnormal." It raises about 500 questions, none of which can be answered - until your next appointment TODAY. Whatever he saw, he felt it was urgent enough that we see the cities on-call Ophthalmologist. If you want to know the most awful, gut-wrenching moment of my life... this was it (up until that moment).
We were referred to Dr. Fava a corneal specialist and eye surgeon. He saw us within 2 hours and was absolutely wonderful! I cannot say enough good things about his bedside manner, personality or how he dealt with Emilia.
The news he gave us however,... Shattered my entire world. (New most gut-wrenching moment)
"Emilia has tumors in both eyes indicative of BiLateral Retinoblastoma."
You always hear about those really rare, off the wall diseases and no-one knows someone who has it... this is one of those, and she has it! The odds... lets just say that only about 23 other kids in all of Canada will share this diagnosis this year... and most of those will only have one eye affected, not both. Dr. Fava was kind in telling us that there was hope but we needed to realize that this is the absolute worst case scenario when it comes to eyes in children, aside from this he did not know enough to advise us further...
**Pause... I had to take a minute to let all of this sink in, really sink in. It was Thursday, four days before we were set to fly to a beautiful island as a family, 3 days after we celebrated our second wedding anniversary, one day after I told my husband how incredibly lucky and blessed our family was... and now our daughter is nearly blind and has cancer in both of her eyes. How did this happen?**
This was my chance to cry,... and boy did I ever for about 15mins. Until I looked around and realized that if we were all crying, who was fighting? Nothing in this world is final until its over and this was just beginning. I am a firm believer that everything, and I mean EVERYTHING in this life happens for a reason and this was no exception. I just recently went through RCIA and found God's presence in my life. I believe now that I was called to him so that I would have someone to fight with me for her, someone stronger than any of us, someone who can and will save her and her eyes. God is good, God is amazing and I know that he can and will make everything okay for her.
Later that evening I got a call from our "team lead" - Dr. Brenda Galli, Canada's leading specialist in Retinoblastoma's. She was wonderful and laid out an entire plan for Emilia's care beginning with a trip to Sick Kids in Toronto on Friday April 27. So we started packing and prepping ourselves for meeting our team of superheroes.
I have been to Sick Kids several times, only passing through and I have always heard amazing things about it, but I never wanted to actually be there. It never occurred to me that this place might one day be somewhere I needed to be. But I suppose if you need to be at any hospital, Sick Kids is one of the best in the world. Our team was amazing! So supportive and willing to spend as much time as needed explaining things and comforting all of us. I will save the details of her treatment for now (unless any fellow RB moms/dads want to know - comment below).
What we learned was that Emilia's case is fairly advanced and we need to be open minded to the possibility that she may not always have two eyes. That being said the team is incredibly hopeful and we are going to do everything possible to fight for them both. Her official treatment is set to start tomorrow - Monday April 30, 2018. I have never been so ready and anxious for anything. Her cancer has had a good run, but it has no idea what is coming for it now. It may be strong, but we are stronger and it does not stand a chance!
Starting tomorrow the tables have turned and Emilia is going to start getting better! I will do my best to keep you posted on her progress - your love and prayers are so truly appreciated through all of this.
xoxo
N
"Life is tough, but my darling you are too!"
"Jesus said to him - Receive your sight, your faith has healed you." - Luke 18:42
