HAPPY NEW YEAR! - A LONG OVERDUE UPDATE!

Happy New Year!!

I hope that all of my friends, family and amazing followers had a fabulous holiday and new years filled with love, cheer and plenty of great food of course!

Its been a few months since my last update on Em and our family and I feel like I have totally fallen off the map... I apologize!!  We have been so busy enjoying life without countless hospital visits, getting settled into our new home and transitioning back to work that I just haven't found the time to sit down and write.

Since the last time I updated, Em has done amazing!  Her surgery in Sept went exceptionally well... like better than we could have expected (ever!).  She has regained a lot of central and color vision in her bad eye and we are beyond thrilled by this!  Its still too early to tell exactly what she can see or what her overall outcome will be, but we are staying positive and continuing to hope for the best!

Emilia had a fabulous Christmas and absolutely loved visiting Santa and his reindeer at EVERY mall!  Im not exaggerating when I say that she saw Santa over 10 times!  As such Santa was very good to her and she loved every minute of it!  We were spoiled with so much love and family time, great food and amazing people... it truly was a wonderful holiday!

2018 has been a very challenging year... but I know that it has done nothing short of prepare me for the amazing things to come in 2019.  I hope that you will tag along for the ride... keep an eye out for exciting new content soon to come!

xoxo

Nichole M

FAITH: FROM D-DAY TO V-DAY - EMILIA’S JOURNEY WITH RETINOBLASTOMA

First there was Diagnosis Day.... and now Vitrectomy Day is finally here.... 

**disclaimer... this post is about both my journey as a childhood cancer mom and an update on Emilia’s road to recovery (in that order).   I feel like it has been a really long time since I have given an update on how we are coping and healing so I hope you all enjoy reading about our amazing little girl and that her story can inspire others to be positive even in the most difficult times....

September 28, 2018.  This is a big day to say the least.  It marks the end of a very long summer.  A summer spent fighting a war against a microscopic enemy.  A summer spent in and out of hospitals, filled with worry, angst and fear.  Today marks the beginning of something new.  It is the start to a new chapter, one filled with hope and light for our family and more importantly Emilia. 

Emilia’s surgery was originally scheduled for Sept 26, and It was exactly one year prior that this journey really began for me.  I remember it like it was yesterday.   Sept 26, 2017... my very first RCIA class.  I had no idea walking into that class the profound effect that it would have on my entire life in the year to come, and how incredibly necessary it would be to my survival. 

For those of you who are not familiar with RCIA it is the Right of Catholic Initiation for Adults, essentially it is a course that you take in order to learn about Catholicism and the path along which you must travel to become a Catholic as an adult.  

Prior to this I had never really been drawn to attend church or learn more about God.  He interested me in some ways but I just wasn’t a “believer”.   I was married in a Catholic Church to please my husband who was born and raised Catholic and again I was never compelled to join the faith at that time.   It wasn’t until last year, after the birth of our sweet daughter that I decided I needed to invest the time to learn more.  I wanted my daughter to have a mother who understood and would be able to guide her in faith in an educated way. 

I spent the next several months at the church every Tuesday evening from 7-9(or sometimes 10 depending on how in depth our topic of discussion took us).  Through my time with RCIA I learned so much about not just Catholicism and faith, but also about myself.  I learned about family, love and how God is such an integral part of any loving family.  I developed a relationship with God that I never would have believed was possible prior to this journey.... and I can look back on it now and feel so incredibly thankful to him.   He called to me, he compelled me to come to him and build a relationship with him so that he would be there for me and Emilia in the months ahead.  

I truly believe that God has a plan for each of us now.  Nothing happens by accident.  It was not until I sat down to write this that I realized the date of my first meeting with God was Sept 26.  I knew it was the last Tuesday in September, but opening up my calendar to see that date sent chills through me.... even though her surgery is now on the 28th,  we still met the amazing Dr. L on the 26th which I feel is a sign.  

As many of you know,  my daughter Emilia was diagnosed in April 2018 with Bilateral Retinoblastoma; a rare form of cancer which affects approximately 10-15 children in Canada each year.   As a new mom I had no idea that this cancer even existed... and of course I never thought that I would ever be a mom of a child with cancer.    But I am.   And I am proud.  

Summer 2018 was, intensely difficult.   Emilia underwent 4 rounds of systemic chemotherapy, over a dozen operations to look at and treat her eyes, countless needle pokes, medical injections to help her body combat the drugs that were combating the cancer and more nausea and sickness than I would like to remember.  Through it all though... we are blessed.  Emilia is the strongest person I know.  She never looks sick, she never acts sick, and she has not let having cancer stop her from doing anything.   At only 20.5 months she has a vast vocabulary, she runs, she plays, she feeds herself, gets dressed and does everything that any other kid her age would.  She is truly amazing when you consider that for the first 15 months of her life her vision was slowly becoming more and more limited.  When we discovered her cancer the doctors explained that it was likely she only had a small patch of vision in the outer corner of one eye... and yet, you would never have known! 

Now some of you may be wondering why I am saying how truly blessed we are after going through all that we have,  it’s a fair question. 

The answer is simple.  God drew me in to him long before I ever knew how much I would need him.  Faith is what has gotten me through each day with a smile, it has helped to keep my head above water on the bad days.  I still remember when I was told that I needed to accept that Emilia would not always have two eyes.  That the priority was to save her life.  The chemo was supposed to make her thin, frail, bald and pale.... well for those of you who haven’t met her, she is chubby, tanned, exuberant and she has a beautiful head of baby blonde hair!  She also still has BOTH eyes; and the one we thought would need to be removed, is the eye that is undergoing a ground breaking procedure today! 

If all goes well, which we know it will as our doctor is being guided by God.  Her damaged retina will be repaired, it will heal and she will regain a significant portion of central vision in her bad eye!  Never in my wildest dreams would I have imagined this outcome!! Oh and I forgot to mention... one other way God has stepped in to help Emilia; he sent her surgeon to us from China!  There is only one man in the entire world skilled enough to do this procedure and we were prepared to fly to him to make it happen, but yet again the stars have aligned for our little Emilia and he agreed to come to us!   Emilia will be one of only a handful of children to ever receive this surgery in Canada... it will be one for the books and there will be a large audience watching her surgery and cheering her on!  How could I possibly not feel incredibly blessed! 

If I had not opened my heart and gone to that first meeting with God,  I do not know how I would ever have made it through these last few months.  I am so thankful to God for all he has done for Emilia, myself and our entire family.  Thank you to each and every one of you for your thoughts and prayers for her throughout this entire process - we love you! 

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