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.

   

February 26, 2017

Another month has quickly gone by. Can you believe it? We've had some pretty great things happen this month and I thought I would take this time to share with all of you.

When the news of Ben's diagnosis started to settle in, and God allowed Ben and I to truly believe that no matter what the outcome, everything will be okay and that God was with us, a huge weight was lifted from our shoulders. It was at this time that I prayed asking God to allow us to share our story and to use us to help others going through a difficult time. I wasn't sure what that would look like, but I was open for anything. It was shortly after that, that we were asked to speak in front of our church community, sharing our story and how we have felt God's faithfulness despite the valley we find ourselves in. I believe sharing helped Ben and I probably more than anyone. Being open and vulnerable with our community and church family was one of the best things we have been able to do on this journey so far. Ben and I soon saw the huge support system we have through our church. This is something that really means a lot to us! For those of you who are interested, here is the video of us sharing.

 www.southridgechurch.ca/benandamy

I also had the privilege of sharing at a woman's group shortly after sharing in front of our church community. It's funny, in our testimony I said, "there are times I smile, acknowledging God for what He has done"....  and there He was again, answering my prayer, having us speak His love for us in front of others. I get this incredible sense of "God with us" when things like this happen. A content, loving, peaceful feeling comes over me. Something I know only comes from God.


Today we went into church to a service which also struck a few cords for us. The topic of the service was, "If God is supposed to be good, loving, and sovereign, why is there so much brokenness? How can I put my faith in God when I experience so much pain? Why would God allow it? Where can we find comfort?" I cried though a lot of today's service. Not because I felt mad with God, but because this service seemed to reassure me of God's work in our life right now and that's a pretty emotional spot for me! Here is the link to the service below. I highly recommend listening to this service if you too are experiencing a rough time.

Here is the video we watched before the service: https://vimeo.com/71270296

Here is the service link: https://southridgechurch.ca/inspiration/#messages

This month for Ben has been full of a lot of tests and waiting. These tests have been done to determine whether he will 100% be going in for his liver resection. Basically, MRIs and CTs have been done to see if there has been any progression of cancer in Ben's liver. If there hasn't been any progression, the liver resection will be done. If they find any growth in the liver since January, (Ben has been off chemo since January) we will have to re-evaluate the situation and talk about next steps. Our biggest prayer right now is that this liver resection will take place. We will certainly share the results of these tests as soon as we get them ourselves! Last week Ben also started radiation. Ben will receive a total of 5 radiation treatments, consecutively. The radiation is being done on the tumour in the colon, to contain and minimize it. As of today Ben has completed 2 treatments, the last 3 to finish this week. Ben has tolerated these treatments fairly well. Nausea has been a big side effect. Thankfully there has been some medications Ben can take to help him get through the bouts nauseousness. So, February certainly has been a huge practice in patients for us. Some of these tests have been booked from the beginning of February and only took place this week, so you can imagine our eagerness to know what our next steps are! However, God has really allowed us to be patient and calm while we wait. It reminded me of the bible verse below. 

I am hoping by the end of this coming week or beginning of next week I can come back here and share some good news with you all. Thank you, as always, for the continuous prayer! We have AMAZING people in our lives!

       

Next Steps for Ben and a HUGE Prayer Request!

February 9, 2017

Not even 2 weeks home from our dream vacation and we've had a lot on our plate! Ben has had a procedure in Hamilton, 2 doctors appointments and many other appointments in the very near future.

Ben's first procedure was on February 3rd. This was his portal vein embolization procedure, which I mentioned in my last post. It's kind of a complicated thing to explain so I have attached a video here which explains it perfectly! (and saves me paragraphs of writing) Click on the link below.

https://www.youtube.com/watch?v=r_MzFSE2sVo

The embolization procedure took place in Hamilton and was 3 hours long. Ben was awake from the entire thing. He spent the night in hospital and was discharged the next morning. He came home with some pain meds, which he rarely takes, and was feeling a bit tender and tired. Since then he has really been doing well and up and about. You'd never know looking at him! He occasionally does have some pain at the incision site and tenderness around the liver. Other than that I've been surprised at how well he has come around.

2nd doctors appointment today. He smiled for me :)

Today, February 9th, we had 2 doctors appointments. We met with Ben's medical oncologist and his radiation oncologist. We learned that Ben will have a CT scan on Monday (Feb 13th) and start radiation for the tumour in the colon starting February 21st. He will receive 5 days of radiation, Feb 21, 22, 23, 24 and 27th. Each treatment is only about 15 minutes long. This is to downsize the tumour in his colon while attending to the liver. We've been told the side effects shouldn't be as bad as chemotherapy and we pray he feels well for treatments!

Following radiation, Ben has an MRI and CT scans booked on his liver and surrounding areas to asses the cancer. Ben has been off chemo since January 4th so they want to see that the cancer hasn't grown since being off treatment. This is a HUGE step. If the cancer has not grown and stayed the same since his last treatment, we can proceed and Ben can go in for a liver resection. If the cancer has continued to grow since chemotherapy they will have to reassess things. Our biggest prayer right now is that the cancer in Ben's liver has not grown and that he will go in for this liver resection! We are asking our prayer warriors to really pray hard for this! If the scans come back good, a liver resection will likely happen the beginning of March. The resection will remove 75% of his liver, the most you can remove during a resection.

When the liver resection is complete, Ben will wait 4-6 weeks to undergo his 4th surgery since being diagnosed to remove the tumour in his colon and possibly reverse his ileostomy. Following this it sounds like he would receive a few more treatments of chemotherapy, but those details aren't totally firm yet. Ben has an appointment tomorrow, Feb 10th, to meet with the colon surgeon in Hamilton to learn more about this.

The next few months are really big for Ben. This has been the biggest news for us since June. We were been told back in June when Ben was originally diagnosed that he only had a 10% chance of qualifying for a liver resection and yet here we are planning the surgery! We've also been told that Ben is the first case presented to his medical oncologist as being a patient who has stage 4 colorectal cancer who did not qualify for surgery, and now does after receiving chemotherapy treatments. I can only fall to my knees, lift my hands and thank our God for His amazing work and this miraculous miracle. We keep listening to the song "Oceans" by Hillsong and the words are just so perfect,... "Spirit lead me where my trust is without boarders. Take me deeper than my feet could ever wander and my faith will be made stronger in the presence of my saviour". Trust without borders... "and I will call upon Your name... keep my eyes above the waves, I am Yours and You are mine"

Our wedding rings.
This picture reminded me of the vow we took to one another almost
 8 years now. Through sickness and health...

I continue to be in complete awe of God's work in our life. Having absolutely no control over this situation and giving everything to God has been a huge part of our journey so far. At times this is hard, and it can be trying but He has never disappointed us and He continues to work and show Himself to us. How loving is our God! I am also very thankful for the work God has done in our marriage. He has created one heck of a team between Ben and I. We couldn't do this without each other. I love you so much Ben!

We continue to thank everyone for your outpour of support and prayers! The hands of help with the girls, with meals, monetary donations, help with groceries, house cleaning, lawn care... the list goes on and on... to have friends, family and community rally around us and help us get through this time has been a true blessing and SO unbelievable. Thank you!!

Our Trip to DISNEY and Next Steps for Ben

February 1, 2017

We have just come back from a full 7 days in DISNEY! What a trip! This trip was gifted to us from some very generous people and we are so thankful and beyond blessed. The timing of the this trip was perfect. Ben had stopped chemo to prepare for some upcoming procedures so not being on chemo and being able to experience all of Disney certainly fell at a great time. With that being said, Ben did have his ups and downs during the trip but we rented Ben a scooter and it was the best decision we made. Disney is amazing with accommodating those in wheelchairs or motorized scooters and we were given what felt like VIP service during our entire trip. Ben's parents and my parent's travelled with us to help with the kids and we could have never done this trip without them! Thank you guys for everything!!!  I wanted to share some of our favourite pictures from our trip. We stayed at the Boardwalk Inn, which was exceptional. We visited each park, Magic Kingdom, Epcot, which was only a 5 minute walk from our hotel, Hollywood Studios and Animal Kingdom. Some of our favourite things were the Frozen Sing-a-Long- a hilarious show for the parents and a perfect sing-a-long for the kids, Turtle Talk with Crush, the Kilimanjaro Safari, the roller coasters including Mine Train, which Brooke braved through, Rock n' Roller coaster, Splash Mountain, and of course the Bibbity Bobbity experience for Brooke. 

This is a trip we will remember for the rest of our lives. It put smiles on our faces and we were able to spend some much needed quality time with family, something we've really needed! Now that we are home the chaos begins with Ben's upcoming appointments and procedures. Tomorrow Ben is already being admitted to hospital for an embolization procedure to prepare him for liver resection which will take place within 3-4 weeks. He will also be starting radiation treatments. So,  as we continue on this journey with cancer we look back on the pictures from this trip and smile feeling extremely blessed to be able to take this time together and blessed for the amazing people in our lives who got us there!

The family by the Tree of Life- Animal Kingdom

Tinkerbell!

Meeting Cinderella

Meeting Elsa and Anna!

A cool, rainy day in the Animal Kingdom, but we all still had a blast!

My dad's cousins, Jerry and Nikki, joined us in Hollywood Studios for an afternoon. They live in Orlando and my parents stayed with them. 

Brooke's Bibbity Bobbity experience!

Princess Brooke at the Lego store in Disney Springs

swimming at the Boardwalk Inn pool!

Surgery Update

January 18, 2017

We are now 4 days away from leaving on our much anticipated trip to DISNEY! The excitement in this house has been at an all time high and as Ben puts it, "Amy has had outbursts of excitement daily!" (He's totally right!) It the midst of all the crazy news in his household the past few months this trip certainly has given us so much to look forward to! I'm not sure what I'm going to do with my spare time when it's done!

Last week Ben and I went up to Hamilton for an appointment for genetic testing. Since this type of cancer doesn't run in his family, and he's only 30, they want to see if Ben carries the gene which would help with the future of our kids and his family members. He went off for blood work and we will wait for these results to come. On our way home from Hamilton we received a call from the surgeons office who asked if we could come to her office today, January 18th. This has been an appointment we've been very anxious for.

Our meeting went really well. The surgeon took her time with us and explained everything to us in great detail. This is what we are faced with now...

When we return from Florida Ben will be admitted to hospital for a procedure called a portal vein embolization. This procedure will clip a vein to induce regrowth on the left side of his liver for his planned liver resection to the right side. Basically enlarging the liver to help with the surgery. Ben will have to wait 3-4 weeks after this procedure for a scan where they look to ensure the liver was successfully enlarged safely for surgery. If the embolization was successful, liver resection will take place. During this waiting period Ben will most likely receive radiation for the cancer on the primary site, his colon. This will be to hopefully contain the cancer to his colon so they are able to deal with the liver first. Removing the cancer from his liver is most important so Ben doesn't go into liver failure or the cancer doesn't spread to other organs. Because of the amount of cancer in Ben's liver they will remove 75% of his liver, which is the most you can remove during a liver resection. Ben will be in hospital for 10-12 days as they monitor him in recovery and ensure his liver function studies improve. It takes 2-3 weeks for the liver to improve, or show any signs of liver failure, which we obviously pray will not happen. An MRI will be done about 2-3 weeks after the resection to assess his liver. At this point if everything looks good, Ben can wait up to 2 months to proceed with surgery for removal of the tumour in his colon. At this point if they get everything any recurrence would likely happen within the first 2 years.

This all sounds great right? I mean, at the beginning of this journey Ben didn't qualify for surgery at all, there was too much cancer and now only 6 months after being told that devastating news we are being faced with these next steps. We are nervous but we are hopeful! This does, however, come with a lot of anxiety and a lot of unknowns. This whole procedure is very aggressive and really our only next option. We've been told that if cancer does return to his liver that they cannot perform another surgery. Letting all of this information sink in today has been a bit challenging for me. I'm not sure what I was anticipating... I guess you want to hear the words "lets do surgery and cure you", but of course it's not that easy. We have a long road ahead of us yet. Months of surgeries and appointments. One thing is for sure, God has brought us this far. 6 months ago being told my husband had 2-3 years to live with no chance for surgery, and now planning this surgery is surreal. And totally God's doing. I don't doubt that for one second. We continue on our faith journey with God and pray that God lays his hands on Ben and heals him. We pray all of this is successful and our God continues to help us through this. We don't know what the next few months will look like but I am certainly glad to have God on our side, comforting us and with us through it all.  

We are prepared to enjoy this coming week at Disney with our girls and our parents where we can laugh and have fun and enjoy the time together before diving into these next steps. I continue to be overwhelmed and thankful for this trip. It certainly comes at a great time for us.

As always, we continue to ask for prayer for Ben. As mentioned many times in this blog, we know what the power of prayer can do and we continue to pray hard that Ben can continue on with life healthy, happy, with his two beautiful baby girls and watch him rise above and beat this with the power and love of our God.

Welcome 2017!

January 1, 2017

HAPPY NEW YEAR! And boy am I happy for a new year. I can only pray that it is a little easier on us than 2016. I've been reading a lot of peoples reflections on 2016 as they welcome the New Year and to be honest, I don't even know where to begin with reflecting on the year. See the thing is, this time last year we were closing on our old home, celebrating the New Year quietly at home saying to each other, "this is our year! we'll move into our new house with the girls and this will be the best year yet!"... well, as all of you know, 2016 may not have been our year. But 2016 has taught me a lot.

This year I have learned the true meaning of gratitude. Never in my life have I experienced gratitude the way I have this past year. From the minute Ben was diagnosed the outpour of support that has come in many different ways has been a true blessing to our family. We have said it before and we continue to say, THANK YOU! We thank everyone who has helped our family this year because without you we would not be able to get through this experience. You all have made this so much easier on us to not worry or stress about the little things, and believe me at the beginning  the little things felt like big things! We have been able to focus on our family and the time together without panic. We are truly grateful!

I have also learned what a deep relationship and faith in our God feels like. There are days I cry to my Father asking for Him to help me or asking Him to help Ben. But there are also days I smile, acknowledging His work in our lives and how He has placed people/things in our lives so perfectly. It's amazing how things always seem to work out just so, even though we aren't sure at the time why things are going the way they are going. We tend to look back and see God in our lives. For example, the day Ben was diagnosed. The people who were with him in the ER, friends and friends of friends working at the hospital who knew Ben. Looking back it's amazing to see how God truly has been with us the entire time.

I don't want to look back and list all the things that made this year hard for us. I will, however, try and remember the good things and the things that make us who we are today. As Ben always says, "mind over matter". And he is right!

With a brand new year ahead of us we have some very exciting news to share! (Yes, finally some exciting news!)

Back in October Ben and I had planned an evening out to visit our close friends. My parents came by to watch the girls. As we were getting ready to leave I remember vividly making the comment to my parents, "somehow... someway... we need to get to Disney with the girls. This would be my dream to do this with Ben". We headed out for the evening and hung out with our friends only to be completely throw off with "hey guys, we've done a little fundraiser for you and we have enough for your family to go on vacation." Well, this sure put a smile on our faces! "You guys have enough for a week vacation with the girls to DISNEY!!." *insert tears of joy* !!!! We were shocked! and SO excited! I couldn't believe, and still can't believe, that just a few hours earlier I had made that comment to my parents and then here we were being told we are heading to Disney with the girls! Here is another example of where I saw God. Unbelievable!! I don't think there is anyway we can truly thank those who have made this trip possible for us. We are over the moon to be able to go. What you might not know is that this trip has also brought a lot of joy through the planning stages. Where anxiety seemed to be controlling me, this trip came up and it has been something that brings pure joy and something we can truly look forward to, rather than dreading the unknown. This trip has brought a huge amount of excitement in our home! so, THANK YOU! Every single one of you, THANK YOU!

So, the countdown is officially on! We leave at the end of January for a week and both of our parents will be joining us to help with the girls. We are very excited to be able to do this trip with them. Thanks to our good friends, and their helpful experiences with Disney, we've made an itinerary and this mom has spent hours planning a trip and has enjoyed every minute of it! We've rented Ben a motorized scooter for the days that may be more challenging for him but pray he will have an awesome week. He will be skipping chemo treatment the week before we leave so that we aren't dealing with the side effects chemotherapy brings during the trip. Despite a crazy last year, this is the best thing to start off 2017 and we cannot wait to share our experience with you!  THANK YOU THANK YOU THANK YOU!!!!!!!!

Brooke and her Disney countdown!

We wish everyone a very Happy New Year filled with much happiness and good health!

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11