RETINOBLASTOMA ROUND 3

Welcome back!


I am sorry it has been more than my usual 3 weeks since the last update on Emilia's condition.  We wanted to wait until we got the results of her latest EUA before posting, and since then it has been very busy (to say the least)!

Emilia finished her Second Round of Chemo on May 24 and she was AMAZING!  It was most certainly more complicated and difficult than Round 1, but she still did better than we could have hoped.  Her blood counts did some funny things near to the end of Round 2 so we were unsure if we would be able to proceed with this next round of treatment because its essential that she has time to recover before going through more trauma.

We were scheduled to go for an EUA (Exam Under Anesthesia) on June 13 to check how well the tumours are responding to the chemotherapy.  This was a very stressful time for our family as we were really not sure what to expect and the results of this exam significantly impact how treatment will proceed from here.   I spent a lot of time asking God to watch over and protect Emilia as we know he has this entire time and... Emilia's results were good and bad.

Good News! The tumours in both of Emilia's eyes are responding to treatment well!  This means that the tumours are either dying or shrinking and they have not yet become resistant to the medication... so we can continue to hit them at full force!! This is huge as when we first found out about Emilia's condition we were told it would be unlikely that they would be able to save both of her eyes.

Not so good news... Emilia has one good eye and one bad (her bad eye has much more advanced tumours than the good so the likelihood of saving it is much less).  Her bad eye is responding but she is still completely blind - we are hopeful that the tumours will continue to shrink and she may gain small pockets of peripheral vision which would be absolutely amazing!  We also discovered during this exam that her good eye shows signs of tumour death/calcification.  What this means is that the tumours are dying (fantastic) but they are also calcifying which means that they are permanent in the size and location they currently are.  This translates in layman terms to mean that the vision those calcifications are blocking, will forever be blocked - there is nothing they can do to remove them now.   The area of her vision that is permanently impaired is her entire field of central vision.

This wasn't exactly the news we were hoping for but it is helpful to know that we can now start to proceed with getting Emilia all of the tools and help she will need to be as amazing as we know she will be!  Emilia has regular play dates with a helper who assesses and teaches us as a family ways to play with and teach Emilia new things that are adapted to her unique way of learning.  On top of this we are hopeful that Emilia will qualify to go to a specialized school for children with low vision.  This school has teachers and programs in place that will allow Emilia to be her absolute best self!  We are so grateful for all of the resources that are available to help her!  But above all we are thankful for the Miracles that have happened to our family thus far; My mother is a miracle in that she noticed and booked Emilia an eye exam long before anyone else would have and even when the doctors missed it - had this gone on much longer it may have spread and the outcome could have been terrible.  Emilia herself is a miracle in that she has advanced Bilateral Retinoblastoma and yet she is able to navigate the world and bring so much joy everywhere she goes.  Finally, our last miracle is that Dr. Gallie and her team at SickKids are saving Emilia's life and hopefully her eyes - they are an incredible bunch!

We just finished the administration of Chemo Round 3 and it was by far the worst yet.  Emilia's poor little body is really starting to be affected by the medicines we are using to save her vision.  She received her dose of Carboplatin on June 14 and following this she was incredibly sick.  We spent most of that night up trying to console her and get her some rest before heading back to receive Vincristine and Etoposide on June 15.    They told us in the beginning that it was likely she would at some point need a transfusion of red cells or platelets and that she would almost certainly need to spend some time in the hospital for fevers and sickness all related to the chemotherapy.  It wasn't until this round that I really was able to see this as a reality and not just a possibility.

Emilia is normally a very energetic little girl.   Always on the move, never one to sit down for more than a second;  she wants to be everywhere and touch everything, all the time.   Since Thursday June 14, this has changed dramatically.  She hasn't been able to stay awake for more that 5-6 hours in a day, needing a nap after only an hour to two of play.  She is unable or unwilling to eat anything at all and the only liquid she will consume in small amounts is her bubba (bottle).  It is so heartbreaking to see our little girl going through this, but we are truly hoping that this is a small price to pay for her long term health.  Its so difficult to explain to anyone who has not had the misfortune of being the parent of a very sick child.  In photos and when she is able to see friends and family, she seems her normal happy self; so its easy to see why people may not understand how sick she truly is.

We are not giving up yet and hoping that she will continue to improve and be able to keep both of her eyes!  It is going to be a very long road for our little warrior but if anyone can do it its her! She has a permanent smile pasted on her adorable face all the time and she lives each moment to its absolute fullest! The biggest thank you goes out to my amazing mother, father and sister who have all be so incredibly wonderful; and to all of our amazing friends for the never ending support, meals and shoulders to cry on,... you are all wonderful!!




xoxo

Nichole




For those of you who are interested and not squeamish I have attached the photos from Emilia's eye exam below.  The above photo is her initial exam May 2 and the bottom is her exam on June 13.

LEFT EYE:

RIGHT EYE:

RETINOBLASTOMA - EMILIA'S 3 WEEK UPDATE

Hello everyone,

I want to begin by telling each of you how incredibly thankful Joey, Emilia and I are for your amazing love and support! It really does mean the world to us knowing we are surrounded by so many wonderful people and so many prayers.

It has been a few weeks now since we first learned that Emilia was battling Retinoblastoma (RB) a rare form of eye cancer.  This has been an incredibly difficult time for us and I know we have not been able to reach out to everyone and thank you, or fill you in on all the details of how Emilia is doing.  As we approach the second round of chemotherapy I thought it would be a good time to give an update on Emilia and how things are going for her.

Since I last updated...Emilia got the results of her MRI and they were clean!  She did not have any pineal gland involvement meaning that her cancer is contained to the eyes - which is AMAZING news! She then had her first round of chemotherapy which was... rough.  Anyone who tells you that chemo is not that bad is lying.  It was awful seeing her wired up for hours waiting for the drugs to finish and trying to keep her entertained (and not pulling on her IV) for those many hours.  But as any parent knows it isn't the actual chemo that is the worst, it is the aftermath.  In order for chemotherapy to kill cancerous cells it also kills healthy, good cells throughout the body - specifically those of rapidly dividing tissues (hair, skin, GI tract).  Emilia was a complete super hero and did amazingly well, but it was not easy - nausea, no appetite, fatigue and constant fever watch combined with daily injections to stimulate her bone marrow and bi weekly trips to the hospital for blood work have made the past 2.5 weeks seem much, much longer.   By day 12 after chemo her blood counts were up to normal and we were able to stop giving her injections and fever watch is much less stringent which means she can see select family and friends!

Emilia is scheduled to go back to Sick Kids this Wednesday May 23 for her second round of chemotherapy and to check her eyes to see if we have made any progress in the battle against her tumours.  We are all praying that she is doing as well inside as she is showing on the outside! However this means we will be entering back into the dangerous time for her and the doctors have told us that each and every time will be harder than the last as her body will slowly weaken from the chemo.  She is so strong and is still in amazing spirits, bringing a smile to the face of everyone she meets - so she is continuing to inspire us to be strong and positive!

During the past few weeks I have found myself falling into a black hole of research.  Looking for answers to all the questions that simply put - don't have answers.  Which treatment is best?  Which is the worst? Which will work for her?  Is it working? What can she see? How long will we be fighting this? Will she keep both eyes? - and the most obvious - Are we doing EVERYTHING we can to win this battle?

This next part is for parents - not because those of you who are not parents won't find it interesting, but because I feel like until you are a parent... certain things just don't have the same meaning.  Also it is pretty raw so if you don't want that kind of detail... stop here.

I haven't been able to fully wrap my brain around the reality of what is happening yet - well I guess thats not entirely true.  I completely understand the reality of the diagnosis and the possible outcomes (from a clinical standpoint); but I feel like I am treating a patient, not like my daughter is the patient.  As a health care worker I see tragic outcomes all the time - and I have become desensitized to the reality that a number or a name actually belong to a life, a family, a person.  Not because HCP are terrible, heartless people, but because... we have to.  If I internalized every bad outcome I would not be able to get out of bed in the morning let alone do my job well.

If you had asked me 2 months ago how I would react to this news (hypothetically) I would have told you I would have a nervous breakdown, cry in bed for weeks, and eat about 100 pints of ben and jerrys.  But thats the funny thing about a crisis - you don't really know how you are going to be until.. it happens.  None of what I thought I would be is true.  In fact it couldn't be further from the truth.  I have not cried, I have not fallen into bed, and I have not turned to ice cream - I have focused, I have researched, and I have been numb.  Until yesterday... (this is the part that only parents will completely understand)...

I had a very open conversation with our lead doctor with regards to the options for Emilia's treatment because I had a few questions (see above research black hole).  After speaking with her and hearing her honest thoughts I felt two things: Reassured and Terrified.  Lets start with the good... Her confidence in her treatment method and the reasons she gave as to why other methods would provide a less ideal outcome made sense and put my mind at ease.  Now onto the part that made me finally FEEL something...

She was the first person to actually give me a timeline... 2 years - before we will really know the outcome of all this, before we will be able to get a sense of what Emilia's life will look like, before the fight will slow down/be over, before we would know for sure if Emilia will keep both/one/neither of her eyes **did you catch it??**

I missed it at first and it wasn't until I was laying in bed replaying our conversation that I realized... no-one had mentioned that NEITHER was an option.  I was told that we had to save one - and yes I know that this is a worst case scenario, but hearing it as an option is probably the scariest thing that has happened yet.  Why?  Because I am Emilia's mother,  I am the closest person to her in this world, I am the person she trusts as completely as anyone can trust... and there may come a time when I need to comfort her and let her go to sleep knowing she will wake up and never see again.  Heavy isn't it?

Sometimes being a parent means making decisions for your children... but the thought of this decision, broke my heart.  I am still mentally processing it and trying to remind myself it isn't happening yet and may never happen... but the weight of the possibility is beyond measure.   Now I do not mean to be morbid or depressing, I know that HOPE and PRAYER are so much more powerful!  That said, I want to be transparent about my feelings not only for my own mental health but also because I want to be a place that other parents going through this can come to for support... and sugarcoating it won't help anyone.  This entire process is terrible, unfair and I can't put it into words...

But I will say this,  Emilia is incredible - she amazes me each and everyday, and I know that no matter what this road we are on leads us to she will always be incredible! And that is something to smile about!



xoxo
Nichole

OUR BATTLE - RETINOBLASTOMA DIAGNOSIS & FIRST THOUGHTS

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

MY VERY FIRST LOUIS

Hello lovely,


So I want to start this post off with a BIG HUGE shoutout to my INCREDIBLE husband (he’s the best, no question)! What better way is there to celebrate 30 than with a little LV love! - Thanks babe xo

I have to admit that my love for designer bags began when I took a job as a SA at Michael Kors.  Prior to this I was a bit of a tom boy and I never really understood why anyone would spend that kind of money on a BAG!  However,  when you sell them for a living you learn a lot about not only the brand but also the clients you are selling to.  I soon learned that an expensive bag was an INVESTMENT, something that if well taken care of and chosen properly (something classic & timeless) will last a very long time! This was something my clients understood and valued; why buy 3-4 “cheap” bags a year when you can buy one every year or two that not only looks better but also stands the test of time (and doesn’t clutter up your closet!).  I can’t lie though,  I have bought some pretty trendy bags in my time (cue bright pink totes and lime green crossbodies..eeek), but not one of them is still mine today!  So it was shortly after this realization that I saw someone carrying an LV and decided that would be my first big investment bag! There is just something about the classic styling, quality, and beauty of their handbags and SLGs that stood out to me!  It is important when choosing your first big bag to find a brand that represnts you, do a little research and find a brand that you can connect with!

As this is my first investment bag I spent hours pouring over the Louis Vuitton website, reading about each bag style, searching photos of them being worn, reading purse forums, you name it... I looked it up! - I went into "Nichole Research Mode."  I never realized how big of a decision it would be choosing “the right” bag.  In my early twenties I fell in love with the Artsy, I loved the braided handle and large size, but to be honest,  it completely fell off my radar when looking for a bag now.   I think it’s because I just don’t have time to spend digging in my huge deep hobo-style bag for my keys, wallet, sunglasses etc.  I need organization above all else!  I was also looking for a versatile bag, a casual everyday shoulder/crossbody that I could easily dress up and wear out to a fine dining restaurant at night.  I know.. that’s a lot to ask of one bag, but I knew if anyone would deliver it would be LV!

The contenders...

Speedy 30 Bandouliere (DE) - tried, true, classic!  This bag is probably one of LVs most iconic.  It is hailed as “the” starter bag for its versatility, timeless styling, and more reasonable price point.   When I finally got off my computer and went in to try my options in person I got to see why everyone loves the Speedy so much.  I was never a fan of this style for some reason.  I loved it on some people and hated it on others and just never pictured it being a bag I could love.  When we met though it was easy to understand why it is so incredibly popular.   It’s a very cute little bag, with a lot of interior room!  Like I’m talking, fit your whole life and then some! I loved the top handles, and cross body option!  It fit my casual day - dressy evening needs perfectly!  The only issue (which may not be an issue for most people) - the slouch/width.  Being 5’4”,  I need a bag that hits me in the right spot and doesn’t stick out too far, which for me... made the speedy less than ideal as a cross body.

Turenne MM - This little known bag got my attention in a big way with its versatile styling and adorable shape + details!  It can be worn any way you wish, which like the speedy fulfilled my day - night fantasy! It was the perfect size, and when worn crossbody fits just a little flatter and hugs the body a bit more than speedy could - perfection!  On the arm it’s just way too pretty... date nights here I come! But wait.... vachetta (Any OCD persons nightmare).  I have heard and seen what happens when this untreated leather comes into contact with any kind of liquid, spots of uneven tanning - enough to drive me crazy!  If it was just me,  I may have been able to see past this, but with a one year old who likes to drool, spit up, spill everything and put anything she gets her hands on into her mouth.... I’m sorry Turenne, but this just isn’t meant to be!

Neverfull MM (DE) - The bag I knew I wanted!  Can you go anywhere anymore without seeing this amazing piece of canvas/leather beauty?  I think not!  I love the Neverfull because it is... never full!  As a mom I carry my life with me it seems and this bag makes getting a hold of anything I need fast and easy!  It looks amazing on the shoulder or handheld with the sides drawn in, and like the speedy it’s iconic and has a reasonable price point for a first time LV owner like myself! Size wise I knew it had to be MM!  The PM is just far too small and the GM... way too large (cue goldilocks and the 3 bears story - mom moment!).  Now to choose a color... I love the monogram don’t get me wrong, but Canada, mom life + vachetta leather... I don’t think they go well together!  As someone with major OCD when it comes to my bags I knew the first water spot would break me so as much as I love mono, it was out of the question... and Damiere Ebene won my heart!

 

Siena MM (DE) -  So I had my mind made up, and then I met Siena! A newcomer to the LV lineup, she was released in June 2015 so I haven’t seen, well any of her in my day to day travels (yes this is a huge plus and made me like her more!).  Pictures really do not do this bag justice, she is so much more gorgeous in person.  Damiere Ebene at its finest, the detailing that has gone into this bag is incredible.  I absolutely love the pleats on both the front and back as well as the small tags which represent the brands original luggage styling.  Whether wearing her as a shoulder/crossbody/hand or arm she keeps her shape beautifully and perfectly transitions from day to night.   Why did seeing Siena make me turn my back on Neverfull... she had it all, plus a removable crossbody + a zipper (love)!  I just cannot say enough good things about this beautiful bag!

My SA Kim was absolutely wonderful and showed so much patience and brand knowledge.  It was a bit of a process choosing my perfect bag but I am so incredibly happy with my choice!  For any other moms looking to get your hands on an all around winner of a bag, you absolutely need to check out Siena!  I will post a "Whats in my bag" mixed with "Pros and Cons" in a couple months once I have a chance to "break her in" a little bit! - Stay tuned!

XO

N

BABYS FIRST CHRISTMAS MINIS

Hello Loves!

There is nothing I love more than great family photos (you know,... the candid kind)!  I think they are just so very important for hitting the pause button and capturing those moments that fly by way too quickly.  I truly hope that many, many years from now they will bring a smile to someones face.

This year for Christmas we were so excited to do family photos with Emilia (since its here very first Christmas!).  Although she wasn't her usual smiley self, she did very well for her first time in front of the BIG camera lens.   We chose to make her the star in classic red plaid and take a more neutral back seat in simple black and whites.  Styling a family for photos can be a challenge but I always go back to classic neutrals and I am never disappointed! Thank you so much to my girl Vic of @delaviephotography for these stunning shots - you are a true artist!

XOXO
N

GOD BLESS EMILIA

Hello Lovelies,

Recently we had the joy of celebrating our daughter Emilia's baptism!  Many of you may not know that I personally was never baptized into any religion and I can honestly say that I never really pursued an interest in learning much about it.  It wasn't until I met my husband who was a cradle catholic that I became introduced to the world of Catholicism.   It was very important to him that we be married in a Catholic church and raise our children in the faith.   While preparing for my daughters baptism I visited the church many times and after doing so decided that I wanted to learn more in order to be able to take an active role in helping my daughter on her journey of faith!  I have to say this was probably one of the best decisions I have made in a long time.

The first couple of weeks of the RCIA program were something that I "had" to attend, but Tuesday nights have quickly become something I look very forward to!  No matter what has happened in the previous week, how anxious, stressed or upset I may feel heading to group;  I always feel absolutely amazing when I leave.  I feel a sense of utter calm, contentment and true happiness.   I haven't yet figured out if this is  result of being surrounded by such a wonderfully positive group of individuals, the topics we discuss, or being in touch with God on a more intimate level, but I truly love it!  I am so thankful for this opportunity and I look forward to learning and growing more on my journey towards my own baptism day.  Keep an eye out for updates, and ultimately my own baptism which will happen during the Easter weekend.

"And he took the children in His arms, 

put His hands on them and blessed them."  

Mark 10:16

Preparing for Emilia's special day was a lot of work but also a lot of fun!  All of the decor and sweets (except the macarons - because I am still working towards perfecting those tricky little things) was made by yours truly.   Please feel free to comment any questions you may have below, and I will include a link to the template I used to make these amazing paper flowers!  I absolutely LOVE them for around a sweet table.   They are very easy to make but do take quite a bit of time so plan ahead if you want to give them a try! We kept with a gold and blush theme from the invites to the chocolates and beyond.  I am obsessed with this colour combination because it is light and not overpowering when paired with white.  Give it a try and I promise you will love it too! Thank you to www.minted.com for the absolutely gorgeous gold foiled invitations, they were so perfect! - And the readdressed envelopes made my life so much simpler.

After all the planning was said and done, we welcomed all of our closest friends and family to join us at our church to witness Emilia's entry into Gods family.   To our incredible God parents, my sister Jacky + brother in law Marco; you are both amazing people and we love you so very much!  Thank you for agreeing to help guide Emilia.  We know that you are both the absolute BEST choices for this oh-so-important role in her life!  Thank you so very much to each and every person who took the time to come and be a part of the most important day of our beautiful daughters life... the day she had original sin removed from her and became one of God's children.  I look so forward to helping you as you grow in your faith my dear daughter.

On this day of baptism may God, who loves us all,

smile lovingly upon this child, so innocent and small

and may he guide this girl throughout the years 

ahead as blessings light the pathway where those 

tiny feet are led. 

XOXO  N