May CT Scan Results

June 7, 2017

We finally received a phone call today from Ben's oncologist with the CT scan results from Ben's scan back on May 30th.

Ben's oncologist said that his scan does show more cancer development in the liver compared to the last scan done in February, however the last scan was done in February and Ben didn't start chemotherapy again until April, which means the growth she sees now could have possibly been greater in April and gone down since resuming chemotherapy. All in all Ben's oncologist thinks we are headed in the right direction and believes the chemo is continuing to work. Ben will have another scan in two months to look at the progress. I know this is a  bit complicated to read, I tried to make it as easy as possible to understand. Basically there is still growth on Ben's liver but it is believed to be shrinking with the resumed chemo. With all that being said, we continue to ask for prayer that Ben's chemo treatments work. We also ask for prayer for Ben as the more chemotherapy treatments his body endures, the more his body fights pain and the side effects associated with it; joint pain, mouth sores, headaches, exhaustion and so on.

Prayer Requests this week...

May 29, 2017

I wanted to jump on here quick to request some prayer for this week.

Tomorrow Ben will be heading in for a CT scan to see how things are doing since starting back up with chemo treatments in April. I am actually feeling confident about it, although my mind will sometimes second guess itself. I am simply asking for prayer that the chemotherapy treatments are working and killing off this cancer. Pray for Ben as he continues to go through all of this. We will share the results as soon as they become available to us.

Chemo is this Wednesday too, May 31st, Ben's 18th treatment. Another day back in the chemo room. I am starting to dislike chemo weeks. I have to mentally prepare myself to be the only active parent and to watch him suffer. Don't get me wrong, sometimes Ben surprises me and still manages to get things done around the house or be up and participate in every day life, but parenting without him is hard on me mentally and emotionally and watching him sleep all the time or walk slowly from room and room makes the reality of this whole situation more real every time. Please pray for the both of us as we continue on this road.

I am hoping by the weekend to have a bigger post to share, just right now these were two major things that I wanted to spread around. After all, we still believe in the power of prayer.

Who are we to doubt? Our God can do anything...

May 15, 2017

Have you ever doubted God, only for Him to clearly remind you that He is still walking the path with you? This happened to me this week. I had been starting to feel alone and discouraged, abandoned. I felt mad at God, and through my anger I felt guilty because I do know how much He loves us. It had been this battle in my mind, a constant pull one way or another.

This past week God showed me once again that we are certainly not alone. He reminded me to take a look at the blessings despite the hardships.

Jay's Game with Ben

Our week started off with a trip to Toronto. Ben and I dropped off the girls at his parents house for a much anticipated sleep over. We drove up to Toronto and met up with my brother and his partner, who live in Toronto.We stayed at their condo where we were greeted with an abundance of love! We had booked the guest room in their condo building and walked in to find gift boxes filled with our most loved items; snacks, gift cards to coffee shops and shopping and gas, breakfast for the morning and a stunning orchid (one of my favourite flowers!) Not only did they do all this, they took us out for dinner before Ben and I headed out to a Blue Jays game at the Rogers Centre. We felt pretty spoiled! It certainly made our night away from the kids extra special!

Coming home from Toronto I had received a message from our neighbour asking if she could come over and deliver boxes of frozen meals/desserts for our family, and she did just that. A group from the local church in Virgil and friends of ours got together and prepared a number of meals for us along with home baked cookies and breads. Receiving this made me feel unbelievably blessed. Our neighbourhood and local church community is rallying around us to help us. It made me sit back in complete awe of the generosity and love they have for us. I am still working and running a home to the best of my ability so these meals mean more time with Ben and the girls and less time cooking and cleaning. We are so grateful for this! Thank you to those who contributed to this wonderful gift.

By midweek we celebrated Brooke's 5th Birthday! I'm still in shock our little 24 week old, 1 pound baby is now 5 years old! We are so unbelievably proud of the girl she has become and enjoy every moment of watching her grow and mature. Brooke makes me proud! She also reminds me that miracles do happen, and that our God is a powerful God.

Brooke's first birthday party with her friends from school. Happy 5th baby!

By the end of the working week I had attended a celebration of life for a man who lost his battle to cancer. I had met this couple through this journey with cancer. I had actually been introduced to his wife, as we shared a very similar story with kids the same age and husbands battling stage 4 cancer. I am very thankful for this relationship. Going through these valleys with others who walk the same roads is very healing for me. It broke my heart into two to watch her say goodbye to her husband. I often imagine what my life might look like if I lost Ben, and here she was standing in these shoes, grieving over the loss of her husband, her best friend, her lover and the father to her babies. I think about her often, my heart breaking and sad for her. But I also know she is a lot like me..., stronger than she believes to be and wiser than her years. I just ask for this community to pray for her and her two kids to get through this.

By the beginning of the weekend we had been approached by a group of friends who asked if they could have us in their home to rally around Ben and I in prayer. This is something that we had done with this group of people when Ben was initially diagnosed, but after receiving the news that the cancer spread back in March, it felt right to meet with them again and bring Ben to God in prayer. This experience for us was moving and powerful. I was reminded of God's unstoppable love for us. It was a life changing experience to sit in a room with people, some complete strangers, praying around us and comforting us. I felt God's presence in that room like no other. I felt myself let go of the doubts in my mind from the weeks before. I felt His embrace and was reminded of God's love for us right then and there. A reminder that I needed this week. We are thankful for this time with these people and the ongoing commitment of prayer they have made on Ben's behalf. Thank you!

THANK YOU!!

Just before the weekend came we were greeted at our house with a delivery of lumber and some very hard working friends who had organized a deck to be built in our backyard. To put a little story behind this; Ben will receive chemo treatment and often spends 4-5 days in bed or on the couch. One of the things I have been wanting to do for him is put a deck out back so that during his chemo days this summer Ben could spend time sitting outside and enjoy the fresh air, rather than feeling cooped up inside all day. I envisioned him laying outside in a chair, watching his kids play outside, listening to the birds, taking a nap under the blue skies, rather than feeling like he's missing out while suffering. To our amazement and much thankfulness our family and friends made this happen for us! Two of Ben's great friends spearheaded the project for us, planning layout and organizing/ordering the lumber. The owner of the local building yard even delivered all the wood himself. The girls, Ben, and I sat outside watching as he lifted piles of wood off the truck for us. This was definitely a highlight in our week! This past Saturday both our dads, Brad, Josh (friends of ours) and Ben hammered out a stunning deck for us, just in time to be enjoyed for mother's day. I watched as Ben put on his work boots and work clothes, something I haven't seen in almost a year. It's amazing the little things you can take for granted. Tears filled my eyes as I watched him work to the best of his ability outside with his friends. Ben kept saying how happy he was and how much fun he was having. I can't thank those involved with this project enough. We now have a place to be together as a family this summer,  to have our family and friends over to celebrate life and friendship and create long lasting memories. This to me is priceless.

The girls and their daddy!

The crew hard at work!

One of my favourite photos- Shows the laughter and fun had during this weekend!

Yesterday was Mother's Day. A very happy Mother's Day to all the amazing mother's in my life. After a very physically demanding day for Ben, we woke up and enjoyed a cup of coffee on the new deck together while watching the girls play. Later that day we had everyone at our house for coffee/snacks, including Ben's family and mine, which made us realize how grateful we are to have a family who can get together like that and all get along and love one another. We realize this is a rare thing and are extremely grateful for family that is so close knit.

Ben and I sat down together and couldn't help but be speechless of the things that had been done for us.Our minds have been blown thinking of all the incredible people who continue to make this journey easier for us. I was reminded of a bible verse this morning as I was sitting down writing this blog entry, "For God has said, I will never fail you. I will never abandon you"- Hebrews 13:5. Ben often says that when his time comes to be with Jesus, he is so thankful and comforted knowing that I would be left with a large community of people who will help me. I couldn't agree more! This week Ben is back in for chemo. He's a little nervous. It seems when he pushes his body physically before chemo he sort of pays for it after, but he says he doesn't regret this weekend one bit! Regardless, I still ask for prayer so that his days ahead are easier on him and that he's well to enjoy the nice weather approaching :)

April Update

April 28, 2017

Time is going by so fast. I can't believe we will soon be faced with the summer weather. The 27+ degree weather this week was awesome!

Round 15- April 19th.

 Ben is now back into the routine of receiving his chemotherapy treatments. His first round back was completed on April 5th, just 3 days after returning home from our vacation to Mexico. Treatment didn't go so well for Ben that week. He spent 5-6 full days in bed. I had lost my husband completely over those days. I couldn't even talk with him, he was so incapacitated from his medications and the chemotherapy. His second week back, completed April 19th, was so much better! It's incredible how different he was this round. I'm shocked by how active he has been! It's a blessing to watch him be up and outside doing the things he loves. For that I thank God.  

Ben's first round of chemo hit me like a ton of bricks. I couldn't believe we were back into this. I was alone in my weakness and my thoughts consumed me. That week I hit the lowest point of this journey so far. I was mad that the surgery wasn't possible and that we had to go back to the chemo room. As caregiver and wife I felt myself losing control of my own well-being. I shared a link on Facebook this week and thought I would share it here on the blog as well. The article talks about unconventional grief, grieving someone alive as well as anticipatory grief. If you are reading these thinking, "what on earth is she talking about?",  I encourage you to click on the links below and take a read.

Uconventional Grief: Grieving someone alive

Anticipatory Grief

With this nice weather I have found a big change in Ben. He is up and doing things! With that being said, he does tire out a lot faster than he used to. We have had a lot going on since I last posted so I thought I might break it down easier for everyone to read. Here we go... 

1. Ben's biggest hurdle right now seems to be leg pain. This occurs quite frequently and comes any time of day. The leg pain is disabling. It can sometimes leave him having to be couch bound. Sometimes it's so bad he says he has to lift his own legs to move them. I am asking for prayer for Ben, specifically with his leg pain right now.

2. Ben has a home nurse now coming at least once a week through Palliative Care North Niagara. At first the words "Palliative" scared us. Ben didn't feel the need to explore that as an option until we found out what this service actually does for him, and me.  Palliative care is defined as an approach that improves ones quality of life of patients and their families facing a life-threatening illness. PCN will be working with Ben to help relieve his suffering with pain management and any other problems that arise. They offer many resources including help with financial questions we may have, help with wills or community support. They have set Ben up with a home wheelchair, walker and cane for the days he finds challenging to be mobile on his own. This service has been free for us and we are grateful for this. Something we once were scared of partaking in has become some bit of comfort for us both. Ben has also received an Accessible Parking Permit. Some days it's hard for him to walk from room to room let alone from one end of a parking lot to another, so this will help him on the days he wants to reserve that energy for something else :) 

Easter with Ben's brother Matt, and wife Ellyse

3. Our family time really has become the most important time in each day. Celebrating Easter this year with family really meant a lot to me. Spending that time celebrating Jesus' resurrection and watching the girls really interested in the true meaning of Easter made my heart explode with gratefulness. I ended up working a lot that weekend, but Ben was able to take the girls to a local church for an easter egg hunt. I love that they are having fun with their daddy! We spent the rest of the weekend with family and enjoyed the fact that Ben was actually doing pretty well! I will be taking a break from my business that I run from our home for the summer to enjoy this time with Ben and the girls. There has been a bit of guilt about the time I spend working rather than enjoying it with them, but also guilt about being the main provider right now too. I've given this to God and I don't doubt He will help us and help me get my business back off the ground when the time is right. What is important to me right now is to spend the summer, the beautiful sunny days outside playing with the girls and Ben and to take full advantage of the days he is well! 

This coming Wednesday is another chemo week. We will be meeting with Ben's oncologist again at which point we will likely be talking about when Ben's next scan will be. The plan at the beginning was to repeat his scan after 3 months of treatment. We will let you all know when that takes place and what the results show. Thank you for those who continue to go through this journey with us. Keep praying!! I still believe in miracles.  

Easter egg hunt!

Story time with daddy

Daddy and Kendal rolling the backyard!

Matt, Ben's brother, helping Ben with the yard work. 

Here we go...

April 5, 2017

Well, here we go again, back into the chemo room. It was only a month ago we were talking about a potential surgical operation to remove this cancer, only to be told that the cancer had spread and is too aggressive. I didn’t think we would be back in this room. Coming in today was a bit harder than I anticipated. Walking down the hall of pods filled with people sitting in recliner chairs receiving chemotherapy treatments just doesn’t seem right. How and why does this happen to people? We are back to planning life around every other week chemo appointments. The nursing staff and doctors were “happy” to see us. We were greeted with smiles and friendly hellos from familiar faces, which made coming back into this a bit easier. One of my second cousins was actually Ben’s nurse today so it was nice to have people by our side who we knew. To date Ben has now completed 14 rounds of chemotherapy, including todays round, and 5 rounds of radiation.

Round 14

We met with Ben’s oncologist today in consultation. Ben is back on the same chemo regimen as before. The side effects should be the same and we’ve been told Ben shouldn’t lose his hair since he didn’t before. (Everyone reacts to this stuff differently) The main goal this time around is symptom control. Ben is now on chemo indefinitely, meaning he will be on chemo until it doesn’t work. Chemotherapy will not cure Ben and surgery is no longer an option so we will be working with the doctors and nurses to control his symptoms the best they can while he is receiving treatment. Over the past few months Ben has been experiencing increased pain, lack of motivation to participate in daily activities, increased nausea and tiredness. We are hoping that chemo will actually improve some of these symptoms along with the proper medications. I was really proud of Ben coming back into this today. He seemed to have a positive attitude and a smile on his face. You truly are amazing, Ben.

It’s been awhile since I’ve actually posted here and so I wanted to fill everyone in on some of the great things that have been going on in our life too.

At the end of March we had friends and family over to celebrate not one, not two, not three, but FOUR birthdays! Our youngest daughter, Kendal, celebrated her 2^nd birthday. She was so excited! “Kendal, how old are you now?” “twwoooo”, she would say with a big smile on her face. We also celebrated my dad’s birthday, Ben’s dad’s birthday and my grandfather’s birthday. Hello March birthdays! Below are some of the photos taken during the birthday celebrations. My favourite is the photo of Ben and Kendal blowing out her candles.

Make a Wish!

March 26^th our family flew us out to Cancun, Meixco! After what was probably the hardest and most heartbreaking couple of weeks of our lives so far, we were told to book a trip and go and relax!  This was also suggested by Ben’s doctor before he started back up on chemo so we were very glad we could go. This vacation was probably the best vacation that Ben and I have ever done alone. We didn’t realize how much we needed that time away until we were there. I jumped into the pool and just cried happy tears. I felt so relaxed. I hadn’t had that feeling in over a year, at least since Ben’s initial diagnosis. At one point Ben looked at me and said, “Amy, I feel amazing. I've had to remind myself that I’m even sick”. Like, WOW! We’ve been on vacations before, but this is the first time in our lives where we have experienced the true definition of relaxation and peace. I didn’t realize how maxed out we were. My parents and Ben’s parents didn’t hesitate to help us with the girls. All of them dropped everything and rearranged their schedules just for us. They spent 4 nights with Ben’s parents and 4 nights with my parents. Honestly, we have the best parents ever!  THANK YOU!  Not only did they watch the girls for us while we were away, but Ben’s parents continue to take Kendal and/or Brooke every Wednesday for us, chemo day or not, to lend us a hand, and drop everything anytime to help. My mom has also started coming over the mornings I work to help me get the girls up and out the door. This has allowed me to get to work without panic or anxiety from the busy morning routine. Ben is also able to get the rest he needs in the mornings, rather than worrying about me and the girls. Meanwhile, my dad has been busy getting a fishing boat ready for Ben to use this summer. (One of Ben’s favourite summer activities)

Our favourite place to go for lunch. Right on the ocean.

I am still in awe of how amazing our family and friends are. Ben and I sometimes talk about how we believe this is God’s way of allowing us to enjoy this time together. I find myself repeating myself with just how blessed we are, but it’s so true!

Another exciting thing in our life right now has been welcoming my best friend and her husband’s new baby boy. Another March baby! (That makes 5!) Watching new life come into the world while watching your young husband battle a deathly illness is exceptionally emotional. I held little Graydon and could only think of how much life he has ahead of him. I said a little prayer over him, that life wouldn’t be so hard for him and that God would bless him with health and happiness. I am happy for my friends and look so forward to watching our kids grow together.

Brooke, Kendal & Graydon

So, we continue down the road of doctors’ appointments and chemotherapy treatments. But we know we are not alone. We are more confident to ask for the help we need when we need it and are continuously thankful for those who lend out their hand. We continue to receive meals the days I work to help with the after work rush; I always say I am going to create a cookbook filled with all of these amazing recipes! Thank you! Thank you for all the cards and continuous e-mails or messages we receive. We couldn’t go through this journey without each and every one of you. My biggest fear sometimes is being alone, and I have never been alone through this journey. My mom gave me a book the other day filled with quotes for calming and soothing refections to find peace. I try and read one or two pages a day. I came across this one and it really hit home for me: "Making things easier for yourself should never make you feel guilty". Thank you for those who continue to make things easier for Ben and I and our family. We are so grateful!

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.