Upcoming Tests for Ben

July 7, 2017

Hello everyone! Forgive me for not posting an update sooner. Summer seems to be in full swing at our house and we've been back and forth to the cottage already enjoying some great family time!

Last Wednesday, July 28th, Ben completed his 20th round of chemotherapy. I am still in awe of just how many treatments he has received and how well he has tolerated them, considering. On the 28th we met with Ben's oncologist who had been away at his previous appointment so we were anxious to meet with her. Over the past month Ben has been experiencing increasing pain and discomfort in his knees and lower back. There are days where he can't walk from room and room and complains of his legs being sore and tired and aching even though he hasn't done anything physically to generate this. We've also noticed some deterioration in his well being. When Ben mentioned this to his doctor she did a little exam on him and has opted to send him for further tests. Ben will be heading in for his regular CT scan to see how his chemotherapy treatments are working, an MRI on his back and a bone scan. In the mean time, his doctor has increased his pain meds which seems to be really helping. Ben also did blood work to evaluate his CEA levels, (carcinoembryonic antigen)  which is a protein found in the blood that is increased with cancer such as colon cancer. The results came back showing that his CAE levels have gone down, which was positive news for us! (we will take anything at this point). For now we wait for these scans to take place and for the results to come in. This is yet another lesson in patience and putting full faith in God.

While we keep trucking along this life with cancer, we are fortunate to be able to escape our everyday lives and spend most of our summer up at our new family cottage. At the beginning of June my parents purchased a cottage on Whitestone Lake, just passed Parry Sound. What a wonderful place to spend time with the kids! We are so thankful to have this place to go. When we are there we quickly forget about the stressors of everyday life and everything seems to slow down and life just seems GOOD. Ben has also really benefited from the northern air. We recently spent a week away with my sister and some of our closest friends where I saw a huge improvement in Ben's everyday health. His energy levels, leg pain, nausea, and fatigue seemed to have subsided substantially! Ben keeps joking that he may just move up there for the summer. I'm almost inclined to let him,... ALMOST! (hehe) It brings me pure joy to watch Ben live his life like he isn't even living with cancer! and at the end of the day, that's what's most important. Below are a few pictures from our time at the cottage so far this summer.

I wanted to post and extend a thank you to those who continuously check in with either Ben or I. With 1 year of cancer under out belts, its easy for others to move on with their own lives, and we don't blame people for doing so!  Our reality is that we are still faced with his daily, whether it be physically or mentally. I want to thank those who have not left our side and who continue to walk this road with us by sending constant text messages, e-mails, phone calls, dinners, cards in the mail, etc., even if you don't see us that often. Ben and I are two people who really rely on our friends and family to carry us and to encourage us through this. So, thank you for sticking with us! Thank you for loving us and supporting us! It does not go unnoticed!

I guess I will end this blog post off with a prayer request for Ben's upcoming tests, that they show improvement rather than increased disease. Pray for the aches and pains in his knees and back, that they subside and that Ben can continue to enjoy the time up at the cottage with his girls! I pray daily for my husband and something tells me God is not done with us yet!

but those who hope in the Lord

    will renew their strength.

They will soar on wings like eagles;

    they will run and not grow weary,

    they will walk and not be faint. - Isaiah 40:31

This girl is pro already!

Off to get some ice cream! 

June 15, 2017

The past few weeks have been quite a whirlwind around here. In the same day Ben and I can go through highs and lows, and everything in between. There is no doubt that cancer continues to be a battled stressor in our lives. We have found ourselves in a really low place the past few weeks. We may appear to "have it all together" or be "happy and outgoing people" but inside, I have managed to run myself into the ground, emotionally and physically, and Ben is struggling just the same. I continue to question why we have been put on this path and why Ben and I continue to be dealt the most difficult cards. Cancer continues to put strain on our marriage and family. I have found myself breaking down more and more. Emotionally losing my ability to keep it together. Our girls still don't understand what is going on, and I am still not sure whether that is a blessing or not. I have, however, found myself talking with Brooke more about Jesus and heaven and where I believe we go when we die. She asks lots of questions and is very interested. Her first response was, "Like, where Simon went?" (Simon was Ben's parents dog) "Yes! Just like Simon!" (If she understands this, I'm running with it) I continue to explain to her how much we miss Simon here on earth, but that we will see Simon again one day in heaven with Jesus. I guess I'm trying to prepare her for life and loss, although I know I will never be able to fully prepare her. For all our friends with young children, I hope you never have to experience explaining this to your children, especially when in your head it's about daddy, or mommy.

Yesterday Ben completed his 19th chemotherapy treatment. 19! We have learned that this is a lot of chemo, and most people we have met along the way will only receive a short course of treatment (maybe 10-12 treatments) and/or radiation. The first question Ben and I seem to get is, "So, when are you done chemo?" we then have to respond with, "well, treatments are indefinitely.... meaning, until the end". People usually don't know what to say to us, I don't even know what I would say to people who are in our boat either. Truth is, sometimes a hug and "I'm praying for you" is simply enough. My brother, Jake, joined us in the chemo room this week. I was so happy to have my brother by our side. Ben was equally happy to have him there. 4 hours of treatment is a long haul, so having the company and someone like my brother to talk with was simply refreshing. I was also glad that Jake got to see a glimpse of what our daily "chemo day" looks like. I don't think one really understands until they see it with their own eyes.

With all this heavy stuff the past few weeks, we have still been able to experience some joy and love too. Last weekend we hosted 85 friends and their kids at our home! (Am I crazy?!, possibly... haha!) We had some of our closest friends over for a BBQ, those who have given, and continue to give and help us daily., without reservation, always putting Ben and I and the girls first. This BBQ was a huge thank you for everything they have done. Anyone who knows Ben and I will know how much friendship truly means to us. Watching our friends kids grow and hearing the accomplishments of our friends and their children bring complete joy to our lives and love in our hearts. This BBQ meant more to me then I think anyone really understands. We are reminded daily of Ben's fight and don't know what a year will bring, so having everyone with us that day and watching the kids all play together and all of us be together was one of the biggest joyful moments I have experienced in a long time. A huge thank you to Niagara Inflatables for hooking us up with a bouncy castle, which occupied the kids for hours! Here are a few photos from the day!

Close friends are truly life's treasures. Sometimes they know us better than we know ourselves. With gentle honesty, they are there to guide and support us, to share our laughter and our tears. Their presence reminds us that we are never really alone!
(most of the group!)

Chef Jeffs! 

Today Ben and I both got to go with Brooke on her school trip. Yup, Brooke got lucky to have both of us! These have been the perks of having daddy home and mommy having Thursday's off work. The joy on her face having me ride the bus with her and her class warmed my heart. What you have to know, is that we traveled to the Butterfly Conservatory in Niagara Falls and I am terrified of moths and butterflies... but when I read the permission form out loud to Brooke and she asked me to come, while jumping up and down, I couldn't say no. So, I went, trying to teach my daughter a lesson of concurring your fears! The day ended up to be great. It wasn't all that bad, and having daddy along for the trip was extra special!

Ben will continue his chemo treatments and have a scan done again within the next two months for review. Ben's biggest battle lately has been with chronic fatigue. Over the past week he hasn't been able to get up much and this is really wearing him down. Our prayer today is for Ben to have restored energy and that he is able to be awake and alert and doesn't miss out on anything!

With being stuck in a bit of a low spot the past few weeks, Ben and I are really trying to focus on quality time together, and with the girls, and leaning more on God to carry us through this. I believe a road without God is difficult and lonely. I believe that once you are focused on His love for you and His presence in your life, and you truly believe this in your heart, everything becomes "easier" to handle and a sense of reassurance and hope, of love and of contentment make you stronger and able to keep going forward. Sometimes it's challenging to keep focused on this, sometimes it's hard to remain faithful and give your heavy load to God, but I see a huge difference in my life and my attitude towards this whole situation when God is present in my heart. Because I am being encouraged to refocus my heart, I encourage you too!

 

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!