With two teenagers in the house, tensions sometime run a little high; and one of the side effects had been a distancing between Evan and his mom. The following letter was hand written by Lizy to Evan; it is reproduced here with both parties permission.
July 11, 2012
Let me begin by saying, I have no idea what you are feeling or what you are going through, only you can. That being said, let me tell you how much I love you and always will, NO MATTER WHAT! I pray that I could somehow take away your pain and suffering, but I cannot. I have stayed awake at night shaking my fists at God in anger, saying, “How can you let this happen, take it from him, give it to me”. But it is not in God’s plan, it is not for us to understand how and why at this time. Maybe someday we will look back and have better understanding. I have even bargained with the devil-yes me…
Sometimes I feel desperate and would go anywhere and do anything and spend every dollar I had to save your earthly life. That is unconditional love. That is what I have for you. I always have and always will. Because you are a special gift from God-even though you may not feel that way-I know you are.
From the time you were born, I have questioned God, “what did I do wrong when I was pregnant with you?” We will never know, maybe the stress of Dad’s accident as a paramedic. It doesn’t matter, it was God’s will.
We knew from a very early age that your name Evan, which means “little fighter” in Welsh, was well chosen-because you have been fighting your whole life. First they told us you might not live past 5 years old if you got NCM (neurocutaneous melanocytosis). You were on the prayer list at Beverly Hills United Methodist Church in Beverly Hills, MI from the time you were born. Then there was the time you got sick and a few days later you couldn’t walk. Do you remember that? You were hospitalized for about 4 days at Beaumont Royal Oak Hospital. Dr. Shwayder came to visit you (even though he was a Henry Ford Dr). He brought you toy snakes to scare the nurses with! Then there have been the “bullies” over the years saying nasty things to you out of ignorance.
When we moved to North Carolina and saw the new dermatologist Dr. Prose at Duke, he told me that we had done the wrong thing. We should have had your nevus removed. I remember coming home and calling Dad (he was out of town on business) and crying, telling him what Dr. Prose had said-questioning our decision.
We attended our first Nevus Outreach Conference at Snow Mountain Ranch in Colorado when you were about 1 ½ years old. We talked to many of the families there about their experiences with their children. One family who had a boy about 9 yrs old at the time had tried to have serial excisions (about 10 surgeries). They said their son was in pain all the time and he had scars instead of nevus. They were sorry they had started down that path. At that first conference we went to in 2000, they couldn’t say it would significantly decrease your melanoma risk to have the nevus removed. The research just wasn’t there.
Dad and I sat up that night talking, praying. I still remember the room and the desk/table that we sat at. We decided this was the way God made you and “God doesn’t make junk”. It was that night we chose not to remove your nevus.
Then came the terrible night in November 2007 when we got the phone call about your cancer diagnosis. We knew you were in for the fight of your life.
You have been fighting now for almost 5 years Evan. I don’t know how you do it. You have more strength and perseverance than I have seen in most adults. I marvel at the way you handle yourself. You have never once complained. You are an excellent patient; trusting in your parents and your medical providers (well mostly). But most of all, through it all, you have trusted God.
That is the most important thing-trusting and believing in God. Only HE has the power to heal you. HE is the “great Physician”. I pray every day that he will heal you-completely-Do you ask God for that?
I remember one time after communion; you shared with me a few years ago, that you asked God to heal you. I hope and pray you continue to ask for that daily. It is ok to ask God for that, he wants to hear from you, whether it is in anger or love. He is a big God, with big arms, that you can always run to and always talk to.
I know Dad has talked to you about this journey and how it feels like you are alone or have to travel it alone. I’m sorry it feels like that sometimes. I experience that at times too. I feel scared and don’t know what to do sometimes. That’s when I go to God because HE is our only source of hope and peace.
There is always hope, don’t ever give up hope. Miracles still happen and I believe that a miracle can happen for you Evan. That’s what I pray for every day.
I love you today, tomorrow and always,
p.s. Sorry if I annoy you most of the time, I really am trying my best to do whatever you want