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: