It’s all very odd. This life is so, so strange. It is so beautiful and so ugly all at the same time. It is so hard, and really so easy, all at once. It’s so very strange thinking about everything in one big picture. Do you ever do that? Do you ever stop and catch yourself and think, like, does this really matter. Should that really make my blood boil? Do I have any “perspective”? What is going on here? I mean, really, think about it, get some perspective and pause before reacting. It’s seriously amazing how on November 20, 2017 I would have let a rude comment by a stranger set the tone for my whole day, maybe even my week!!! I’m not even kidding, cancer gave me perspective. Sure, I still get worked up over things that don’t matter, sure, I still get my feelings hurt, I still over react. But I can tell you my perspective is a lot more in check now compared to what is was. I’m not trying to boast, trust me, I have very little to boast on. But, there is a lot of beauty in a simple life. When you really pause to think about what matters, it’s simple, and beautiful.
When we learned of Sloane’s upcoming surgery, I probably received over a hundred text messages asking what one could do, what we ‘needed’, and so on. And I couldn’t think much, but I knew deep down I needed pictures. I needed one more professional documentation of the simple things. I went straight to the woman who captured our wedding so beautifully, and I asked for help. And then this happened with no hesitation.
Thank you Stephanie, we will never be able to repay you for this. Your talent is amazing and we will cherish these pictures forever.
I feel like a lot has happened in the past couple weeks. Austin, Sloane and I went to NYC to see Dr. Abramson at Memorial Sloan-Kettering Hospital for a second opinion on treatment. We were welcomed with open arms and Austin and I both feel content with our decision to go there. We had a rather harsh conversation with the doc after Sloane’s eye exam. The conversation actually started with the statistics of death from retinoblastoma complications and it was very, very hard to listen to. I knew from the minute he started with those statistics that he was not going to be the sugar coating type. Needless to say, he proved himself to be as intelligent as the internet told us, and we left knowing what had to be done. A few things were done on Sloane’s eyes that had not been done yet. The first being an electrical test to show us if there was any electrical activity in her eyes which
relates to her vision. Her left eye was a flat line, she has no vision in this eye. Her right eye showed 42% electrical activity, which we are unsure if that is central or peripheral. The other new thing done was an ultrasound to check her choroid, which is the layer of blood vessels behind her eye. This is a whole new area of concern. Unfortunately, Dr. Abramson was ‘highly suspicious’ that the cancer had reached the choroid in her left eye. We will know more on this once we get the pathology back after her surgery. If the pathology comes back positive, my understanding is that Sloane would need a bone marrow biopsy and spinal tap to rule out metastasis at this time. From those results then we would decide what treatment to do next. Sloane’s right eye will continue to be followed by both Dr. Plager at Riley and Dr. A at MSK.
Now to surgery, Sloane is scheduled for enucleation of her left eye this Tuesday at 9am at Riley. It is an outpatient procedure, and we are told, very minimal on the pain scale. She will be fitted for a prosthetic 4-6 weeks after surgery. This surgery really scared me, it used to make me nauseated just thinking about it as a possibility. But I guess when it’s put in front of you with a side of some scary pathology, that little thing called perspective comes tappin on your shoulder. Also, explaining something like this to an almost five year old, really puts things into perspective. Especially a very caring, loving, protective, inquisitive, older sister. God bless your sweet big heart, Audrey Lynne.My mind is kind of all over the place, but I wanted to put a giant thank you out there. To all the people who have been holding Sloane and my family so tightly, to everyone who reaches out, to all those praying so obsessively, to every single one of you who loves us, thank you all from the very bottom of our hearts. We seriously could not do this without you, to people far away and people we see everyday, you are our people, you are helping us more than we ever knew we needed. You are carrying us day to day and you are keeping us laughing. To those loving Audrey, especially when she needs a little extra pampering, thank you. To a few special women who continue to carry me through every single day, I thank God for you daily. And to our family, we could never pick stronger loved ones to fight this fight next to us, day by day.
A few specific prayer requests before I try to find sleep on a night like tonight. Please pray for a successful and smooth surgery, please pray for steady hands for Dr. Plager and his staff, and please pray for a pain free recovery for little Sloane. Please pray for Austin and I, pray that we are open to the emotions that are surely to come this week, please give us strength, please allow us to be vulnerable amd please pray for grace. Please pray for Audrey, please pray for understanding for her big little mind, please guide us as we help her through this transition also with her little sister. And please pray for Sloane, please pray for her little body as it continues to fight such a large fight. We know she is made for so much more and this is just a small chapter in her story. Lastly, please pray for all the other families who are fighting similar battles, please pray they know they are not alone because we are wrapping them in prayer.
St. Lucy, pray for us.
Blessed Father Solanus Casey, pray for us.
Lots of love
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