My Open Letter.

March 20, 2017

It's almost been 2 weeks since we found out the news that Ben's cancer has grown all back and actually spread into his lungs. (see my last post on all those details). These two weeks have been extremely challenging and oh so heavy for Ben and I.  I wanted to share a post this week on where we are at with all of this news and how things have been going over in our home. This post may not be as positive and "inspiring" as my other posts. It is filled with the inner thoughts and feelings I struggle with daily. I'm not sure I need to apologize for that... after all, life right now is very real and hard.

Coming home after hearing this news Ben and I were both very discouraged and felt extremely defeated. I cried for days, I still do. We feel angry and sad. There is not an hour in my day that doesn't go by where my mind quickly faces the reality of our situation and the utter panic of what my life could look like in only a few short years.

The other day we were sitting in our living room watching our girls play with no care in the world. Ben and I both felt emotions quickly come over us and found ourselves crying together while watching the girls play together. Brooke, soon to be 5, quickly realized that mommy and daddy were upset. She came up to me and asked why we were crying. I wrapped my arms around her and Ben grabbed Kendal and we, to the best of our ability, explained to both girls that daddy is sick with cancer. We told Brooke that daddy will have good days and bad days where he will feel sick and unwell, but that we need to continue to pray to God asking Him to help heal daddy. You could see she was trying to process what we just told her, but obviously has no real idea what I was saying. She hugged me and hugged Ben and went on playing. A few days later Ben overheard Brooke talking to herself in the other room. He quietly walked into the other room to find Brooke dressed up in a princess dress, complete with a fur vest, high heals and a microphone, praying...asking God to help heal daddy.  In this moment I realized that she does actually understand more than we think she does and that she is learning to lean on God in her own way. How special is that?

My mornings continue to feel rushed and filled with getting two kids up and out the door so I can get to work on time. This is usually followed by Ben waking up vomiting or laying in bed in pain and discomfort. Coming home from work is equally challenging with prepping dinner, getting the girls fed, bathed and in bed, followed by watching Ben continue to vomit and struggle with severe headaches, pain and disability. Thankfully we have meals coming now, which has allowed me to focus more on the kids and Ben. Thank you to those who have brought a meal and who are bringing meals.

These are just a few examples of experiences when I suddenly find myself questioning life and God. I have been struggling with prayer too. How can Ben and I continually go through deep, deep valleys, find a way that our marriage thrives through it all, and then be completely side swiped with this and keep going? How can my husband, who I love unconditionally, who I can't imagine my life without, be given a time line on earth with his wife and daughters? How can that be ripped away from us? I have not been able to get a hold of my anxiety since hearing the news that Ben no longer qualifies for surgery and will need to be on chemo for the rest of his life. I already feel like I've lost a lot of my husband. Cancer makes him sick. It takes over his ability to function like a normal 30-year-old father of two young kids should. Simple things like trips to the park, a weekend getaway or an evening out can be extremely challenging for Ben. Lately I've been feeling like I have lost our youthful life and the things a young family should be enjoying. My chest feels like it's caving in most days. I find it hard to hear a positive message or sing a worship song. I find myself in a fog.The other night Ben was in the other room and I was sitting in bed when I quickly found my mind escape me and I was filled with totally incapacitating thoughts and I just wept. Ben came into the room to find me and just hugged me. And do you know what my mind does next? It says, "So what will happen when you don't have those hugs?" Anxiety and mental health are a huge part of going through this. I am doing what I can to better myself for Ben and the girls. I apologize if sometimes I am not the person who I want to be right now.

I don't tell you all of this for you to feel sorry for me. I share this with you because I truly believe in being open and vulnerable. I find comfort in typing out how we are doing and making our friends and family aware of the situations we deal with on a daily basis. Call me crazy....

I also know many of you are hurting for Ben and I and the girls. A continued thank you for those who reach out and offer your support. It hurts us to watch everyone hurt with us, but it also shows just how much you love and care for us. I want to encourage those of you who have health on your side to fully embrace life with your family and your kids. Complain less. Smile more and be open in life. Stop worrying about the little things. They are little... Stop living life by a strict schedule of events. Let go and enjoy this time with your kids and family. I look back at photos before Ben was diagnosed and sometimes wish I could go back to that point where life really wasn't as hard as we thought.

I know this post may seem very daunting to read. I can't pretend everything is okay and I don't want to pretend it is. Social media has this way of making everything look like sunshine and rainbows and sometimes it's not that simple. Here then is my open letter. To fill you in on where exactly we are and the struggles we are enduring.

Continued prayer for our family is much appreciated.  I am still focused on God and his love for us. Please don't get me wrong here. I trust Him and I long for Him to help us through this, day by day. I couldn't do it without having God, some days are just harder than others. Below are verses I found that helped me today. Maybe they will help you too. There is also a link here to a song I find myself listening to frequently.

When my world gets loud, could you make it quiet down?

When my head, it pounds, could you turn down all the sound?

If I lay in pain, by my side would you stay?

If I need you now, would you kindly calm me down?

https://www.youtube.com/watch?v=3Y-BL7CjWhE

-Amy

Whenever I am afraid, I will trust in You. - Psalms 56:3

You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You. - Isaiah 26:3

One Step Back...

March 8, 2016.

Let's do a little recap here. In January Ben's chemo treatments showed to be working. The doctors were very impressed and so we met with surgeons in Hamilton to discuss a possible liver resection. This resection would cut out 75% of his liver to remove the cancer, at which point after recovery Ben could potentially qualify for surgery on his colon to remove the cancer. Ben underwent an embolization procedure to prepare him for this surgery, enlarging the one side of his liver so he would be able to live with the portion left. Of course these surgeries were pending the results of his CT scans and MRIs done over the past few weeks. In order to quality for the the first liver resection the scans had to show no growth of the cancer.

Yesterday was the day we had been waiting for, for weeks. I felt my anxiety go through the roof Monday and Tuesday wanting to know what Ben's scans showed. I sit here at my computer in complete devastation to share with you that the cancer has indeed grown in his liver, and now in fact spread to the lungs. We sat in the doctors office yesterday to be told that Ben does not qualify for the surgery that was once in arms reach. The cancer is too aggressive. I can't tell you how much I've cried since hearing those words yesterday.  My poor husband is in a very hard place right now.

Next Steps: Ben will now go back on chemotherapy indefinitely. Chemo at this point will not cure Ben, but it will help improve his pain and increase his quality of life. Ben will do 6 months of chemo at which point a scan will be done to see how things are doing. If the scans show to be stable, Ben will repeat another 6 months of chemo either the same type, or if they find his body is not responding they will switch him to another form of chemo. In complete shock sitting in the doctors office we asked what this meant for Ben and our family. Ultimately Ben has been given 4-5 years living on chemotherapy. Writing that makes me so sad. Our heart hurts and our heads are spinning. We are feeling very defeated right now.

I can feel my hands shake and tears form in my eyes as I write this post. My heart breaks for our friends and family who have been awaiting the news on Ben's surgery.

We do believe God has a plan for us, we just aren't sure what it is right now. We are asking for prayer right now to help us and lift us through this. There was such a light at the end of our tunnel and feeling like that light has gone out has Ben and I completely at loss. Spending quality time with our friends and family is very important to us right now. To our friends and family; I encourage you to reach out when possible. Time together and memories made are special. We still remain hopeful that God is not done with this journey and great things can be done.