Retinoblastoma - 6 Years Later

  Retinoblastoma 6 Years Later

Emilia's Journey

Family, Friends and Followers of the Amazing Emilia!  It has been far far too long!  I know....  and I apologize!  But that said, no updates means only one thing - No Cancer!  

So what is happening now you ask - let's quickly recap since I haven't been here since late 2018 / early 2019.  

Emilia became a BIG SISTER!  But not to one sibling... to TWO!  We welcomed twins into our family - Joseph and Olivia, in June of 2019.  It was a wild ride and totally unexpected but as it turns out - they were the perfect addition to our family and we are just so blessed!  

So back to the star of the show (sorry twins)... Emilia - she just recently celebrated her 7th birthday!  Which means that we have been in what's considered the "safe years" for 2 whole years now!  To say that making it to 5 years was a relief, is the understatement of understatements.  

Until Mia's 5th birthday we had quarterly checkups at SickKids which consisted of EUAs until she turned 3 and was finally able to listen and follow directions well enough to get good retinal photos while awake - that was such a relief for us (not so much for her).   Each and every visit was positive... no new tumors, no new retinal detachment... a clean bill of eye health! Thanks be to God. 

Now that Emilia is over 5 we only go to see the amazing team at Sick Kids twice a year.  Just to keep in touch and make sure things are stable - which they are!  Each and every time we go everyone continues to be in awe of her.  Her outcome was one we never could have dreamed of - both eyes, with vision, depth, color, only a slight turn... she is a walking miracle!  Thank you to each and every one of you who prayed for her - we truly believe that this was a gift from someone with way more power than we will ever know.  

Today Emilia is in Grade 1!  She excels in school, she loves art, music, drama and reading!  We were never sure how the transition to school would go and what assistive devices she might need because we don't know what she sees even now.  But, in true Emilia fashion... she has wow'd us all.  While she does require a larger font (30pt) and she has a very stylish pair of glasses to help magnify what she sees; she reads at or ahead of her grade level, her art is incredible and to see her at play - you would never know she is 'legally blind'.  While talking about things she excels at I would be remiss if I didn't hit on music.  As some of you may remember,  Emilia has always loved to dance, swinging those hips to the beat long before her first step!  In that regard things haven't changed a bit!  She's added in singing and is slowly working on learning a little guitar too because you can't be a Pop Star without an instrument (or so says mom).  They say where one sense may lack another will be enhanced and this could not be more true for her.  She is a natural! 

Before writing this I took a minute to read through all my old blog posts... cue the tears.  It's strange how stress affects you.  Some people break down, some shut down and some stand up.  I'm not sure exactly where I fall in that but I know where Mia falls - she fought hard and she won.  I do remember vividly though not having any tears, aside from that first 15 mins,  I couldn't cry, I just - couldn't.  One of my good friends at the time said to me... "it's a  crisis Nic and you are holding it all together.  You can't fall apart so you won't.  Just wait.  When it's over, when it's done,  when everyone is safe.  Some day when the dust settles it will hit, it will hit hard and you'll let it go."  Today was that day - and I have no words... just - Thank You. 

Thank you God for saving her.  Thank you to my mother - my rock, the person who came with me every single day, the one I leaned on when I had nothing left.  Thank you to my husband for providing for us so that I could take care of our baby and not worry about our home or life changing.  Thank you to my family, my sister for taking weeks off work to be by my side at the hospital and for setting up a go fund me for Emilia that will help her get all the devices she will one day need.  Thank you to my dad and brother for loving her so hard, for loving us, for being shoulders to cry on, hands to hold.  Thank you to each and every person who made meals for those 16 hour days at SickKids - if not for you it would have been KD and ramen noodles or nothing.  Thank you to all my friends and family who supported us with kind words, visits, love and listening - we love and appreciate each and every one of you! Thank you Father Bill for blessing her eyes.  Thank you to each and every person around the world in every prayer group who prayed for her.  Thank you to the team at SickKids who worked so incredibly hard to save my baby.  Thank you to Dr. Brenda Galli who dedicated her life to the study of Retinoblastoma - your dedication, hard work and knowledge were invaluable through all of this - you are one of a kind.  Thank YOU - for reading all of this, for following along, for loving us from near and far. 

Finally,  I want to thank Science - this sounds weird I know. But it is because of research and everyone around the world who donates in any way to help fund it that my baby and so many others can have positive outcomes.   If Emilia had been born in the 80s/90s/early 2000s.  She would have no eyes.  They would have been removed immediately.  When diagnosed she was graded at E for "enucleation" in both eyes.  But research, countless hours spent studying, trials and errors... led to treatments that resulted in her keeping both her eyes!  Research is the reason she can see the blue sky, the green of grass, the sunshine, birds in the sky, the ocean.  Research is why she can see the faces of the people she loves, why she can run and play freely without worry, read, draw, build... it has given her more than words can ever say.   It's the reason we donate every month to Sick Kids and try to participate in or donate to any cancer fundraiser we can.  It's why we share them and urge others to do the same - because cancer isn't rare.  It will touch each and every one of us in some way.... it's scary... it hurts... but sometimes... because of hard work, research and perseverance...

We WIN! 

xoxo

Nichole M