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
