Two years.
It’s hard to believe that its been that long since we first heard the words that would forever change our lives, “Your child has cancer”. And yet, in some ways it seems like an eternity ago. Time is funny that way.
Its been over a year since I have updated here. I find our Facebook page a more convenient way to stay connected to all the people who love our family, and pray faithfully for Ethan’s needs. And yet, I have avoided updating there as well.
At first, I told myself that it was because it was summer. That I just needed to disconnect from the reality of Ethan’s medical issues for a while, and focus on making memories as a family.
I told myself that in September, which was Childhood Cancer Awareness Month, that I’d do my part. That I would share the reality of childhood cancer with my family and friends. Inform people that childhood cancer is NOT rare, that childhood cancer research is grossly underfunded, and the many other harsh realities of the childhood cancer world.
But today is October 1st. And I have done none of those things.
Is it because we have moved on? Is it because Ethan is completely well, and his days of requiring medical care are behind us?
Unfortunately not.
Ethan’s appointment card for this Fall is unbelievably full. We have consults with surgeons for multiple upcoming procedures, an ultrasound to assess a new growth on his ankle, MRIs, Pre Ops, oncology clinic appointments, and appointments with other members of his team.
Is Ethan physically unwell? No. In fact, he is thriving! This summer, we saw a huge shift in his energy levels and ability to engage fully in the activities he loves. He had a fabulous summer at his favourite place in the world, Chesley Lake. His days were filled with fishing off the dock, connecting with friends, playing baseball, and swimming in the lake. His nights consisted of relaxing around the campfire, laughing at jokes only our family would understand, playing cards and eating s’mores. Good times.
I should be beyond thrilled.
On one level, I certainly am. When I look deeper, however, I realize that I am going through a season of grieving that this is still our reality. Horrible, I know. There is so much guilt that goes with saying something like that. Guilt as I think of the many families who have so many more reasons to complain than we do. Children who face yet another relapse, those suffering through the horrible treatments that are meant to save their lives, and little ones who are no longer with us. How dare I grieve our reality. We are so deeply blessed. I have so much to be thankful for. And yet, too often fears and doubts arise and cloud my determination to remain positive.
There are days that I lose focus on the blessings, and get drawn in by dark worries. Our oncologist’s words sometimes play on repeat in my mind. That he expects the tumour will grow, and at some point require chemo. That the residual tumour is inoperable, and Ethan will never be able to say that he is in remission, or ‘No evidence of disease’ as they call it in the brain tumour world. These are heavy thoughts. They too often swirl about in my mind in the dark hours of night, keeping me from sleep.
There are times when I feel isolated in this reality. I know we are loved. I know people care, but it can feel really lonely when you have a medically fragile child. When you are in the midst of crisis, people take notice, but sometimes the support is just as needed in the aftermath. No matter how well things are going, we are acutely aware of how fragile that stability may be.
So, that’s my struggle. I’m working through it.
My son, on the other hand, continues to amaze me with his resiliency. Does he struggle with the uncertainty, the unknowns, the realities he hears shared by his medical team? Absolutely. Is it easy for him? Not at all. But instead of retreating inwardly, like his mama, Ethan chooses to focus on those around him. He is determined to make a difference for other kids who are facing a cancer diagnosis. To find purpose in the midst of his uncertainty.
For months, he has been developing a plan to bless the children and families of 3B2, McMaster’s pediatric oncology ward. His ideas have been through a few revisions, through consultations with the child life specialist, and the person who coordinates all donations made to the unit. It was suggested that we consider gift cards, which families find the most helpful form of support. We learned the truth of this ourselves, when Ethan was an inpatient. The unexpected costs of things like gas, parking, and food was beyond anything we could have imagined. And all this at a time when the family often needs to take time off of work to care for their child. It is a heavy burden.
For our family, it was the generosity of our church and community that literally helped us to survive financially. Ethan’s dad was off work for six months, and was initially denied any kind of reimbursement through his benefits. If it were not for the gift cards that we received, along with the meals that so many people lovingly prepared and delivered, we would not have made it through that time. That may sound dramatic, but it is the raw truth. Even with all of the help, there were still expenses that we had to put on credit, but thankfully not to the extent that we could not recover over a period of time.
To help other families in a similar way, we will be collecting gift cards for gas, McMaster ‘On the go’ cards, area restaurants such as Boston Pizza, Tim Horton’s, Williams and Wendy’s, grocery cards, and gift cards for places like Wal-Mart where families can buy household necessities or even gifts for the holidays.
Ethan, the thoughtful young man that he is, was willing to adjust his initial plans to do what would be most helpful for McMaster families. However, he insists that younger kids are just not going to be excited about getting a gift card. For the younger crowd then, we will provide a small Beanie Boo along with a gift card for the family. The donation coordinator loved the thoughtfulness of Ethan’s plan and his willingness to compromise, and she approved his revised idea. Ethan will also be designing cards with an encouraging message, to be handed out with the gift cards. He wants to pass on the message that ‘No one Fights Alone’, as this was such a powerful encouragement to him in his time of crisis.
We are hoping to collect Beanie Boos and gift cards between now, and the beginning of December. If cash donations or etransfers are easier for those who want to support Ethan’s dream, we can purchase the gift cards and/or Beanie Boos on your behalf. I hope that people will be excited, and will help us to make Ethan’s campaign successful beyond anything he could ever imagine. Not only will you be bringing a smile to some very special little faces, but you will also help ease the financial burden for families whose children are fighting this horrible disease. As if that were not reason enough, you will be empowering our young philanthropist – helping him to find purpose and even degrees of healing, as he focuses on the needs of others instead of dwelling on the challenges in his own life.
Studies show that helping others has many benefits such as elevating mood, enriching social relationships, and even improving health, “When you connect to a greater good you are able to enlighten your perspective regarding the world and your own life. This shift in focus will shed new light on the worries and concerns in your own life, possibly lessening the load you feel you have been carrying. As you gain new perspective you can also develop a trifecta of achievement, inspiration and a new sense of purpose” (Wendt, 2015).
Will you join us in helping to make Ethan’s dream a reality? It will do him a world of good to focus on needs outside of his own. To bless and encourage families in the midst of crisis. And you know what? I’m thinking it may be just the thing to restore peace in my heart as well.
Much love,
The McPhersons
Source:
Wendt, J. (2015, November 2). The healthy benefits of helping others. Therapy changes. Retrieved from https://therapychanges.com/blog/2015/11/healthy-benefits-helping-others-dr-jennifer-wendt/
Ethan's Journey 