Lessons in trial and tragedy

This morning while reading about the devastating Nova Scotia shooting deaths of 18 (so far) innocent individuals, it struck me that tragedy is such a broad and inadequate word for such terrible situations. Nova Scotia is a tight knit province filled with incredible and empathetic people. Truly some of the best people I know are from there. It makes my heart hurt that they have to go through this.

By the definition above, one could say (and many have) that my family is living through a tragedy given cancer at the moment, but when compared to the likes of the heinous crimes committed in Nova Scotia and the devastation caused to those families, I can't think of ours as a tragedy. Ours is simply a trial. Something that can be overcome.

Our trial allows us to learn daily life lessons and spend time together, appreciating how lucky we are to be together while going through the daily difficulties of this disease. Ironically the OCSB posted a prayer today about finding the blessings and the lessons in this tragedy.

But how does one make any sense out of the loss of so many lives at the hand of an assassin who didn't even know them and had no obvious motive for wanting to take their lives? What possible lessons do those poor families need to learn from this (other than the obvious that life is short)? And even if there are lessons in this, it's unfair that they won't get the chance to learn those lessons and apply them while their loved ones are still here. 

That's what my family gets to do...find the lessons, learn the lessons and apply the lessons from our trial because we still have time to. Our victim (Ollie) is still here. We can change things and make whatever time we have together better. Don't get me wrong, it's still unfair to him and to us in so many ways, but you always hear that great debate of whether it's worse to lose someone suddenly or if it is harder to have to watch them become progressively sicker. I have to say that I think it would be infinitely harder to lose them suddenly. 

So we mourn with all Canadians right now, trying to make sense of the unthinkable and desperately wishing it wasn't happening when we're all scared and emotional during this pandemic. Sadly, that's likely why it did happen now, but we'll have to wait months to hear the official word while the investigation assesses 16 crime scenes. We will pray for these families to ask for them to be granted patience and peace as they wait and try to find logic in this nonsensical blow.

For those of us on the cancer path, blessings can come when we least expect them. Over the last week for example, I stumbled upon an online Facebook Group for patients and families with Anaplastic Large Cell Lymphoma (non-Hodgkin's). I had been encouraged by my friend Sue months ago to seek out online forums to connect with other cancer caregivers for support. She has been my cancer sherpa in many ways since she's been battling it in her family for years now. 

Thus, I finally got around to searching for forums, found the ALCL one and posted about Ollie' s situation. I  received a handful of kind responses. One of them was from a mama in the UK who has a 3-year old daughter in almost exactly the same situation as Ollie. She invited me to contact her, I reached out and have learned so much and gained hope from her. Her daughter had a bone marrow transplant 73 days ago after having lymphoma in her central nervous system, too and is doing well. She's on a slightly different drug than Ollie, but knows others who have taken his drug and are doing well. She's so positive and yet so honest. I am so grateful to "meet" someone who can relate so much to what we are dealing with and from the beginning without even knowing us is mentoring me and supporting me. In turn, she knows someone whose child with ALCL just got it in their central nervous system, is in the ICU and is experiencing vision issues, so I shared some of our lessons learned and our blog in case it helps her friend in some way. It feels good to connect with others who are facing the same trials as we are and to be able to learn from each other.

On the home front, Ollie is still feeling pretty well and it's been two weeks tomorrow on the Ceritinib. We had to get a refill today. It's enough for up to 50 days and the cost if we didn't have amazing private insurance through our jobs would have been $8490.99! That's almost $170 per day for one medication. Imagine the poor families who don't have private insurance and couldn't afford the life saving drug?! Now that IS tragic. Apparently some pharmaceutical companies will give the meds at a reduced rate or possibly for free on compassionate grounds in certain cases, but I can't imagine having to beg for free medicines to save my son's life. 

Even in Canada where we have an incredible health care system, there are still barriers to everyone getting the best care. While I am grateful that this is one challenge we don't have to overcome, it pains me to think that some will. (Note if you are an ALCL parent in this situation now or in future, contact me and I will help you to find a way to get it for your child. Money or lack thereof should never be a reason for any child to suffer.)

So tragedy or trial, everyone affected comes out with scars. Some physical, many emotional. Ollie's physical scar from his original lymphoma "bump" reminds us daily of our trial and likely always will, even when he is well and as it fades with time. Emotional scars are easier to hide arguably, but so much more important to treat. I will pray that those in Nova Scotia touched by the tragedy and those of us dealing with the trials of cancer will all come through with few emotional scars and the opportunity to apply lessons learned to our lives where possible.