As a family the last few months have truly been unbearable but we continue to follow Evans example and live life to the fullest,as though it is your last day. We continue to laugh and find the strength and courage to make Evan proud. As his mom I refuse to give up, I will continue to be his voice and the voice for the over 10,000 children affected by a childhood cancer diagnoses, and their families.
Childhood Cancer has no boundaries and could affect anyone of your children. As a quote says “You wonder why raising awareness for childhood cancer is so important to me? Well the day before my child’s diagnosis I wasn’t a parent of a child with cancer either.” Becoming aware is the first step, and honestly when you do the research and hear the lack of funding that goes towards childhood cancer, it is devastating. These children undergo the same intense treatments and drugs as adults. In Evan’s case he was one of the statistics that I was given the heads up on due to the location of his tumor, from the get go it was not good. Evan solely had to rely on hope and aggressive treatments to save his life.
In 5 years my son was never in “remission” his tumor never touched because any surgery would take his life on the table. From the get go our focus was Evans quality of life. At 2 Evan underwent a very risky brain biopsy, within in a
month of finding out. As well in that month he had a port placed and started a 72 week protocol of Vinblastine Chemotherapy. From the age of 2 on Evan underwent MRI’S every 12 weeks plus a numerous amount of emergency ones if his health declined and doctors had no explanation. Instead of experiencing being a normal toddler Evan became to know a hospital as his second home. Instead of being in preschool and becoming educated on going to school Evan was getting taught the ways of the hospital and learning to undergo treatments and tests no child should ever have to endure. We were very blessed we had a couple good years with Evan, every MRI showing no change….he got to experience JK and SK being a normal little boy, he got to attend school even though he was known to be a handful at times.
Evan defied everything his illness, the obstacles he faced and yes even rules. When Evan was first diagnosed I was prepared that I may never hear my child talk, I was even given videos to watch with Evan so we could communicate in simple sign language. He proved many wrong and by seven despite not always be easy to understand he could get his point across and many learned to understand Evan.
There is one thing I will always be thankful and blessed for I could hear perfectly even time he told me how much he loved me. He was pretty sure he wanted to marry me…..it was comical when he would blurt random things out. I took that as a compliment because I knew it was his way of expressing just how much be genuinely loved me and knew I would take care of him for life. We had a very inseparable bond, we had went to war together and he knew I never would leave his side. He knew I would do what it took to be by his side until I had to leave and he had drifted off. He knew when he woke it was my face he would see and my hand holding his.
Because the staff knew Evan and I were each other’s source of strength they usually would let me in once they could right after his scans or in recovery, they know it would be my face he would want to see. They knew he was the perfect patient and complied with their requests because he never was scared. I will always remember the last year in London he would literally dance and skip his way to the MRI suite. He laid there and allowed the doctors to do what they needed. He never showed any kind of fear and never once ever complained of the cards he was dealt with in life.
2015, well it was literally a year I witnessed my son fight for his life. Despite being attached to London he handled the transfer to Mac amazingly. Even being with new faces he never showed fear. I will never understand why his low grade tumor had to pull such an explosive trick and become an aggressive tumor. Had it remained low grade there is a very high chance I would be able to hug and kiss my sweet boy goodnight. April 21st will mark exactly one year since Evan completed treatment. An aggressive protocol of 30 rounds of radiation. Instead of attending school Monday to Friday Evan was undergoing a daily structured routine. 6 years old, waking up 3 hour’s before treatment. The first hour taking a high dosage of odansatron to help with nausea, the next hour having to take 6 chemotherapy pills by mouth….that alone a memory I won’t forget, having to use a chemo mat and gloves and open each capsule then administering it to Evan. It was moments like that I had to not only be a mom but a nurse to my sweet boy. Making sure he wasn’t in pain, that all his medications were given on time that he was as comfortable as possible. Every night laying next to him whether in hospital or home, I couldn’t leave him, I knew as his mother he needed me. An hour after taking his chemo pills I would wheel him in by wheelchair to receive radiation. I would always lift him onto the table even when many were considered of my back. As his mother it was my duty to lift him up to make sure he was tucked in with baby and SpongeBob under a warm blanket. I was there talking to him as they placed and bolted the mask to his head down to a board. Telling him I was proud and that everything was okay….encouraging him to stay still so that as we called it the “special medicine” would be done very quick. When Evan had to choose whether he wanted to listen to music well undergoing radiation or hear his mom’s voice reading to him, he chose listening to me. Once I left with the staff I would go into the control room where I seen a video monitor of Evan. I would stand between technicians and hold a button down telling him I could see him and that I was proud and everything would be alright. I would read special books created by classes at his school, or we would read SpongeBob but nearing the end Evan loved Robert Munsch.
His fight on earth may be over BUT EVANS LEGACY begins and will forever live on. I have said this to many and excuse my language (though I know Evan would agree) “Cancer has fucked with the wrong mother.!” I will balance being a mom to his brothers, investing in myself and making sure that my voice is heard and that I continue honoring Evans memory. I know in my heart that Evan was an angel placed on earth for a reason and I know God chose me to be his mother because he knew I would have the strength to be his voice when every part of me is falling apart.
As you will see in the pictures we have continued to honor Evans Legacy.
Hosting the first ever Holiday Easter meal at Mac for those patients and families who couldn’t be home plus the amazing staff.
As well St.George and Evan were recognized as heroes at the 2016 Night of Heroes event in support of Community Living London, his brothers took a new addition to the family thanks to their brothers year worth of Wacky Wings point cards.
His brothers have been doing amazing, they have their moments but in all honesty they have learned a lot from Evan and that is to continue on with a smile despite life being crap. As Evans mother this has been by the far the worst pain and heartbreak. Nothing can prepare a parent to lose their child. It’s an unbearable pain that does haunt you constantly it doesn’t go away, you honestly just wake up every day adapting to it and praying you can find the strength to get threw the day. Evan and I have a bond that not even Heaven can break, Its hard to explain but holding your child against your beating heart the moment they leave this world there is definitely an exchange of power. I know he is close to my heart and I know that when he left he did take a piece of me with him. Like I promised him Together Forever and Always, no matter where we are.
I do believe Evan gives me the strength to continue making a difference in numerous ways, I do believe he is guiding me threw this journey. I won’t lie there are days I don’t get out of bed barely. I get up and get his brothers to school then I honestly come home set the alarm and sleep the entire morning and early afternoon. Then pull it together for his brothers though they are both very intelligent and know when I have had one of those days. They tell my it’s in my voice I whisper and won’t talk loud and that they can see it in my eyes. I reassure them it’s normal to have really crappie sad days. Being sad and missing Evan just is our way of showing that we love him so much and miss him more then words could say. We have every right, he was a huge piece of our family. We all came to accept Evan as he changed through out his journey. Even though Evans diagnosis pulled me away from being an attentive mom and did ultimately affect my relationship with his brothers because Evan did require a lot of my attention and usually wanted to snuggle and have my full attention at a majority of times.
After Evan passed the relationship between his brother’s and I blossomed. We’re able to be open and I have explained why I did what I had to. I told them if it was either one of them I would of been right by their side to. They don’t understand why God had to take Evan, but they have realized why for 5 years they have had a mom who hasn’t always been there. They do understand that I needed to be with Evan and they realize it wasn’t easy on me being away from them as much as I was. They both agreed Evan needed me more because he was sick. They have learned the hard way of what it’s like to lose a brother who they both adored. Logan often referring to Evan as his best friend, which I would agree because I saw the bond between those two……they faced a lot and Logan did remain by Evans side as much as he could.
When Evan entered hospice November 4th 2015…once he was settled and his brothers were becoming familiar with Stedman Hospice on November 7th, the day before everything started to decline quickly for Evan, his brother Logan had a sleep over we ate tons of junk food and watched movies. The three of us, together and enjoying an evening of family time. The next morning when Logan and I woke up Evan was just waking up, we kissed him and said goodbye and we loved him and would see him soon. When I arrived after dropping Logan off and getting cleaned up nothing was ever the same. Family had come down as it was my birthday, they we’re in the sitting area. I walked fast to Evans room knowing something was wrong. I always remember the way he looked at me his eyes glossy and his swallowing a huge problem. I couldn’t understand the day before he was eating Kinder eggs and all the foods he loved. Within a night everything changed. He then laid down and drifted off into a sleep for a few days. He like always shocked me and awoke one morning. For weeks he would eat ice chips, Popsicles, thickened drinks and smashed up fruit. He overcame the obstacle that the swallowing problems gave him. He then drifted in and out of sleep until the night his wings were ready. Even to this I can’t make sense of it. He was positioned so I could sleep in his bed. I awoke at 4am full of energy and alertness. When the nurse checked him I was praying it was pain related. But I knew in my heart the deep sighs he was taking were a sign that his time to leave us was upon us. I crawled into his bed and held him tight until that moment I knew in my heart it was over. I felt him leave. We had been listening to music on his phone as he passed. Lullaby by Nickelback was playing. For hours I laid next to him as his body got cold I would wrap comforters and blankets on us, holding him close as possible praying it was all a nightmare. As he left Stedman I held the candle and led the way for him. Well they placed his body in the vehicle the sun beamed threw the overcast clouds. It shone down upon us as he left.
Evan I am beyond proud your my son; I am beyond proud for the fight you endured to stay with us.
You will NEVER be forgotten xo
~ Nicole Wellwood