December CT Results

December 13, 2017

I know a lot of you are awaiting the results from Ben's most recent CT scan, so here we go...

We arrived at the hospital for 10 o'clock this morning. Today was a chemo day, plus we had two doctors appointments scheduled. We try and do this regularly to check in with the doctors and make it easier on Ben rather than going back a forth multiple times a week. To our surprise his pain and symptom management doctor was away, however we still met with the nurse to discuss any changes Ben may be experiencing, which to date is none. We then met with Ben's oncologist, which was the most anticipated appointment today. Today we found out that Ben's CT scan showed an increase in lung lesions and an increase in liver lesions. Meaning the cancer has in fact grown and did not respond to Ben's second-line treatment. Just writing this I feel my heart breaking for a lot of you that were rooting Ben on. The news didn't come as a major surprise to Ben and I, but we were hoping for the best. Today Ben started his third-line treatment with a drug called Cetuximab (or Erbitux). This is the really expensive drug I had mentioned back in one of my older posts. OHIP does not cover the cost of this drug, nor does our private insurance group, however we were fortunate to find out that Ben was approved for funding to receive this drug. We had applied for this previously knowing that Ben may have to, at some point, try this drug. Well, here we are. Cetuximab comes with it's own side effects, things like severe acne, abnormal hair growth, severe diarrhea, muscle contractures etc.
I asked the hard question...what are the chances of this working? We were told it only holds a 20% chance of shrinking Ben's cancer. However if it is successful Ben could be on this treatment for awhile. We are obviously praying for the latter. The plus side? Ben no longer has to come home with a bottle of chemo attached to him for 48 hours, so showering whenever he wants is making him happy! His chemo schedule will stay the same, going bi-weekly for infusions, making our routine the same.

Today was a rough day. All that news plus Ben's first treatment with this new drug took over 5 1/2 hours! We left the hospital this evening at 6:45pm, arriving at 10am. It was a very long day for the both of us. We were told the first infusion would take the longest, but we didn't realize just how long it would be. Thankfully we have amazing family and neighbours who came to the rescue to help with the girls.

Although this wasn't the news we had prayed and hoped for, I think God is keeping Ben and I both calm and ready to conquer yet another part of this journey. If I give this all to God I feel calm and at peace. If I veer away from Him I become anxious and angry. I am trying really hard to remind myself to keep my eyes on Him to get through this next part of this path. I'm just not sure God is done with us yet.

Through sickness and health

December 7, 2017

As we quickly approach Christmas I can't help but reflect and think how fast a year and a half have gone by. June 22nd, 2016, Ben was first diagnosed. Here we are a year and a half later celebrating our second Christmas with the big "C". Who invited it anyway? I'd rather not have a spot for "C" at our table this year.

Ben has been continuing on with his second line treatment. He completed his 30th round of chemotherapy on November 29th. This past Tuesday Ben had a CT scan to see how this chemo is working. This was the first scan he's had since starting this new drug. We won't receive those results until next week, but as always we will share an update when it becomes available to us. This was Ben's 8th CT scan in 18 months. These scans are starting to become dreadful and tiring for Ben. It's the same routine; go into the hospital, wait for hours, have someone poke an IV into your arm and wait some more. He's become pro at these scans now though. Tuesday was an exception. After Ben's scan was completed we sat in the waiting room waiting for the nurse to come out and remove Ben's IV. We waited, and waited, and waited. Finally a nurse came out to let us know that a blood clot had been seen in his lungs during the scan. She told us we had to go over to emerge to be seen. Of course this took us both by surprise. We walked over to emerge while I quickly made phone calls making sure our girls were okay with my sister and my mom. My phone was also dying until I ran into a friend who works in the hospital and kindly set me up with a charger so I could contact family and let them know what was going on. Ben was seen rather quickly. I guess that's one perk of having cancer. You present your card indicating you are a chemo patient and they assess you very quickly, getting you out of the waiting room full of sick people. (this is the last thing we need!) We were brought over to the RAZ where a doctor met with Ben and I and told us that pulmonary embolisms are common in cancer patients. Thankfully this was caught early enough that this was not a critical concern at this point. He was given a prescription for some blood thinners which require daily injections into his abdomen. His home nurse has come daily and taught Ben and I both how to administer these injections. What's one more thing, right? I feel bad for Ben. I feel my heart breaking when I have to see him adding more medications to his daily regimen. The nurse in the ER made a comment that has stuck with me. He was showing us the needles and how they work. Ben and I were trying to make light of the situation by lightly joking and he said, "Through sickness and health right? that's what we've signed up for". He couldn't have been more right. Through this magnitude of sickness, I will stand next to him, and love him unconditionally!

Dec 5th- CT scan waiting room

The past few months have been challenging. Watching Ben fight each day in bed is very, very hard on me, as well as him. I've lost a lot of my marriage through this cancer. And my children have lost a lot of their daddy. A few days ago I captured the picture below. Every time I see this picture I think of a number of things. Why is this happening to us? I can't believe our 5-year-old has to go through this, Brooke is so sweet to comfort her daddy, I can't believe Ben has to go through this, can God see the pain and suffering our family is in? Why can't Ben be healed of this so that our children don't have to watch this and that Ben can be the outgoing, fun daddy that he is. I don't doubt my faith, matter of fact my faith is strong and it's what keeps me going every single day, but I will never understand how life is taken away from not just the patient, but their family members and how God is in there somewhere. Attending church has been hard. The worship music is moving and I feel God there and yet I am sad and cry each Sunday I am in church because I feel confused by His path for us. This doesn't stop me from praying, for reaching to Him for comfort. He helps me get through my panic and my loneliness. He does help me talk myself into stop crying and getting myself together again to continue on with the day. I give God all that credit. I find myself constantly saying, "Do not panic, I am with you". some days out-loud, some days in my head. It's the most comforting verse to me. It reminds me that I am not walking alone, even despite me feeling alone.

    
As we approach the Holiday season I will continue to ask for prayer that Ben is able to feel good and be up to celebrate Christmas with our friends and family. I told Ben that I am feeling very blessed that he is here with us this Christmas. I remember buying a video camera last year and video tapped all of Christmas because I didn't think he would be here this year. Well, here we are, and I am so glad that we have had another year with each other and that our girls have their daddy here this Christmas, even if he is on the couch. It's the little things.

Thank you again to those who have helped us get through the past few months and for helping make sure that santa has some wonderful things for the girls this year. Despite our struggling hearts we continue to feel blessed and loved beyond imaginable.

If I can leave this post with one thing it would be to remember to slow down and spend some good quality time with your loved ones. This sounds so cliche, but we have learned how important this really is. During the season of running off to malls, kids christmas concerts, activities, parties and preparing a feast for your family, I encourage you to sit back, hug the one next to you, tell them you love them and give thanks for them. Love to you all as you prepare for this Christmas.

Nov 29, 2017. Ben's 30th chemotherapy treatment.

Many hands make light work

November 20, 2017

The definition of community: 
a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.

I have mentioned the power of community many times in my posts. It's just something I can't go along without emphasizing. This year community has been one of the biggest parts of our life and without it we would not be standing here making it through like we have. If you happen to have access to my Facebook page you would have seen that this past weekend was quite eventful for us. I managed to trigger a sciatic nerve that had been bugging me for some time now. This landed me on the couch for 2 days with minimal movement. I was finally able to get up and walk around today to go see my doctor and get some x-rays. Trying to care for my ill husband and our two very active girls, and suddenly finding myself not even moving put me into a bit of a mental spin. It hit me how helpless I was in that moment. But I remembered to do what you have all been telling me over this past year and a half... to call for help when I need it. So, I called upon our community of family and friends and boy did you come through!! 

I obviously couldn't care for our girls so both Ben's parents, and mine, helped out by taking them for the night. Sleep overs at grandma and grandpa's and momma and papa's are always fun! My sister took the girls for a day to play, my brother-in-law came to the rescue with osteo care, which helped me immensely, my sister-in-law came with dinner, my best friend took Kendal for the day so I could get to my appointments, my parents set aside time during their busy weekend to come and clean up all our leaves within the yard, and within minutes of posting this mishap on Facebook I had a meal set up for every day this week to help carry my load. How great is the feeling of community. How many hands make for light work in our life right now. How loved we feel in a deep time of need. If you have ever been in a position of fully relying on community, you will know what I am talking about. This feeling of complete helplessness switches into a feeling of helped and cared for, loved and genuinely blessed. You, our community of friends and family, are to be thanked for our family standing on our feet right now. You, our community, are to be reminded how much we love you all and how thankful we are for every single one of you. I see God's greatness in each of you. There is not a day that this goes unnoticed. 

I am currently on the mend, feeling better today but still very sore and tender. I am taking it easy and listening to the practitioners and doctors who say to slow down and rest, that stress does crazy things to our bodies. Ben has had a few OK days. He is up, but he is not always well. He is really struggling. I watch this man face every single day with its own challenges. What breaks my heart is when he says, "I am just so sick and tired of being sick and tired every single day. I just want to wake up and have one good day. Even a few hours". The fatigue and general unwell feeling is taking a lot out of him. Ben has been on this journey and receiving chemotherapy for 17 months. Last Wednesday Ben completed his 29th round of chemotherapy. We have family and friends who have received 6-12 rounds who are in awe of how much chemo Ben has actually received to date. Just the side effects of chemotherapy alone are enough for some people to throw in the towel. I can tell by looking at Ben that his biggest fight to keep going is the little redhead and little blonde staring up at him each day. He certainly loves his girls. 

The plan going forward for Ben is to continue on with the current chemo regimen. In 4 weeks we will meet with his oncologist who will set up another scan to assess the progress. I used to be able to kind of tell how the chemo is working for Ben but I don't even know anymore. These things are blending together and the good days he once experienced seem so far and in between. Send a prayer out for us that this chemo brings him more days ahead and good days with us. We are still meeting with the pain and symptom management physician and Ben's pain seems to be controlled and manageable now. We are thankful for this!        

So, I'm going to keep this short and sweet today. I couldn't go the rest of the week without thanking you all for your help, yet again, during what seems to be the worst year of our life, and yet somehow the most humbling and gratifying, the biggest year of learning and changing and believing, and I give you, our community, a lot of credit for helping us grow and learn how to give and support others during a time of need. 

It's a New Day

October 28, 2017

I work in a medical office were older patients remind me of how fast the days and years go by, and to cherish each and every minute. I usually just nod and smile in response. I know what they are referring to; they are approaching a point in their life where time is very valuable. I can already attest to this. Sometimes age has nothing to do with it.

It's already been a few weeks since I shared an update and yet it honestly feels like it's only been a few days ago. My last update was that Ben and I had met with his doctors to go over options for next steps for a secondary treatment plan. We had all agreed that Ben would resume chemotherapy with FOLFOX, after thanksgiving. Up to this point Ben's last chemotherapy treatment was September 13th. They had planned for Ben to receive treatment on the 27th of September but we found out the chemo wasn't working anymore and the doctors wanted to look into our next options. That appointment day was very hard on Ben. He was very unwell. The reception staff and nurses noticed Ben wasn't well and worked together to find him a bed to lie down while we waited to meet with the doctors. When I reflect back on that day I am so grateful for the wonderful staff and friendships in the staff that we have made at the Walker Family Cancer Centre. They all adore Ben and you could really tell as they worked together for him and checked up on him and I. One of the nurses we see there frequently even brought him and I both a warm blanket while we patiently waited. It's the little things that warm my heart.

While waiting to start up his new treatment Ben was very sick. He couldn't leave the bed or keep his eyes open along enough to even hold a conversation with me. I was starting to get really worried about him. We had decided that Ben would resume chemo after thanksgiving, and yet I wasn't sure if that was a good idea or not. Watching him struggle daily was absolutely heartbreaking. My family planned to head to the cottage for thanksgiving this year, after Ben suggested it. For about a week there was no way in my mind that Ben would be able to go. We have an ensuite and there were days he couldn't even get there without experiencing extreme nausea and pain. I have learned that we will always plan to go somewhere, attend something, or meet with someone, and if last minute we can't commit, we don't. So, that's just what we did. I packed the 4 of us up for the cottage, let Ben rest and take all the time he needed and prayed he would be able to join. The day before we left my dad had come by to help me pack up the truck. I had told him Ben would probably not be coming but we packed up Ben's fishing gear and everything in hopes that I was wrong. The next morning I had asked Ben how he felt to go and he still wasn't 100%. He sat on the side of the bed with his head hanging down and tears in his eyes. At that moment I literally felt my heart break. This man, my beloved husband, is struggling. All he wants to do is get up and starting "living" again, and yet it almost seems impossible. Our plan was to leave for the cottage after I was done work. I sent the girls off to school and daycare, went off to work and told Ben to rest and we would make our decision when I got home. As a backup plan I had made sure his parents and siblings were around in the event the girls and I went for the weekend, but someone was here to stay with him. I am thankful for family so close by who would drop anything for us. I finished up at work and when I got home Ben said, "we are going." So, we went!

My handsome hubby soaking up a good day!

There is something about the norther air up there that gives Ben this new life. When he is by the lake with his girls and his boat he is more alive than ever. We spent the long weekend at the cottage with my parents, my siblings and the girls and it was really, really great! Ben listened to his body and took a rest or nap when he needed one, but joined us for dinner, games and of course some fishing and boat rides. I had not seen him this awake in weeks. Ben was also able to escape back up north last week with some buddies and I was so happy to hear that he had a good time. Thank you to the guys who went who took care of him. It just shocks me to see him up there. It's amazing!

Coming home from the weekend up north I did see Ben struggling again to feel good. As always I let him rest in hopes that I would see him come back to life, but that didn't really happen. He spent the next few days in bed and in a lot of pain. I would come home from work and find him asleep on our back deck, or curled up on the couch fast asleep. He doesn't like when people say he "over does it" when he's up north. He's living his life to the fullest and the best of is ability and if that means a few days on the couch after a great time at the cottage, then so be it.

A few weeks ago we met with a new doctor that has been assigned to Ben, a pain and symptom management physician. What a wonderful doctor!!!!! She took her time with us, sat with us and went over everything. Her heart was in that room with us. You could tell just by talking with her. This new doctor will be working closely with Ben to really help him with his pain management and find the best program that will give him better days ahead. I'm glad she is apart of his care going forward. While meeting with her we also had to go through some pretty difficult stuff. She explained to us that one of her other jobs is to make an action plan in the event that treatments stop working. Ben and I are realistic people, we are not new to this thinking, but to have it finally brought up in a doctors appointment hit my heart a bit more. Things like, do not resuscitate papers and questions about hospice or home care were all discussed. Of course, we are not at the point where any of these decisions need to be made right now, it was just a conversation for us to think about. I was glad it was this doctor who did that with us. Her kindness and gentle conversation made it that much easier.

Last fall- 2016

Ben has since completed 2 rounds of the secondary chemo. Ben has now received 28 treatments of chemotherapy combined. Many have asked how he is responding to the new chemo. To be honest, I don't really see a difference. He has  been experiencing an increase in nausea, he says his hands are effected by cold and he does experience tingling and numbness. I think these are the biggest changes. Otherwise, Ben is generally unwell 95% of the time. As time goes by he spends most, if not all of his time in bed or on the couch. He struggles every single day. There used to be a rhythm to his days; 3-4 days after chemo he would be unwell and then he would start to feel better. This isn't the case anymore. The unwell days are blending together whether it is a chemo week or not. I came across a photo of the 4 of us from last fall which showed us enjoying a beautiful sunny day in NOTL. I quickly realized how much more active Ben was even a year ago. The picture suddenly made me feel sad and overwhelmed. I could see the 4 of us having fun and being a "regular family", and then reminded very quickly that Ben wouldn't  even be able to participate in this simple activity anymore. In 1 year I am shocked how much has changed. In 1 year I have watched him thrive to spending every single day in bed. Cancer is a ruiner of life. Cancer takes everything away. The bad and the good.

Watching the love of my life in an absolute struggle every single day, I have decided to take a break from work and be home with him. Up until this point I have been pushing myself to get to work to provide for my family as Ben hasn't been working. There have been mornings where I am rushing to get 2 girls out the door, Ben is vomiting and I am leaving the house for work. It would absolutely kill me to leave. I would sit at work thinking, "what are you doing?". I fought that feeling for almost a year. I started struggling with regret and feeling like a terrible caregiver to him. Yesterday was my last day in the office. From now on I will spend my days with Ben and care for him like I have been wanting to. I am relieved that this decision has finally settled in my heart and in my mind. Some of you might even be thinking, "what took you so long?", but when I am doing everything I can to keep things floating, I was doing what I had to do. I also enjoyed work in the sense that it gave me familiarity and it was the only thing in my life that was "normal". We are EXTREMELY thankful to those who have helped us finically along the way because we wouldn't be able to be in our home if it wasn't for your help. Thank you.

My prayer request today is that Ben has the energy and feels well enough to get up and spend quality time with the girls and I. I pray that this new pain med regimen will work for him and that he is comfortable. I pray that his nausea subsides so that he is able to get up and be apart of every day. I pray that the time we have with Ben is spent in good company, rather than in bed. Sometimes I think, "can't God just give me that if He isn't going to heal my husband?" I know that sounds harsh but that has been a constant thought lately. I will be honest before I sugar coat this all. I don't understand the power of healing. What healing? I don't see any healing and yet I have been on my hands and knees begging God to heal and for a miracle. In the same breath, I am not in denial of what is happening. I have accepted that this is what our life is now, but that certainly doesn't make it any easier. Nevertheless, I am going to keep asking for prayer in the hopes that God can still help us through this. My heart still believes He can.  

Girls at the cottage

prepping dinner- Auntie Cate and Kendal

A successful cottage turkey. Mom & Cole

Treatment Plan- October 2017

October 4, 2017

A week ago I shared with you all the news that Ben's first line of chemotherapy is no longer working. A lot has happened since then. Here is the latest update and what we went through today.

Ben has been experiencing increasing and debilitating headaches. His oncologist booked a CT of his head, which was done today. Ben was at the hospital for 7am this morning. Unfortunately, I was not able to go with him right away as I had to make sure everything at home was running smoothly with the girls. Another unfortunate thing was that Ben was really not feeling well. He actually went to bed yesterday afternoon at 2:30pm, and only really woke this morning to get to his test. Ben sat in the waiting room for over an hour waiting for his scan and feeling very unwell. My in-laws took our youngest for the day while my neighbour took our oldest for me and made sure she got off to school. I then joined Ben at the hospital finding him still sitting in the CT waiting room looking very unwell. My heart broke. His pain was intolerable. He was sitting in that waiting room filled with a dozen other people and it was just too much for him. I work in the health industry and know to be patient, but I not going to lie, I was rather pissed off about the whole thing. Shortly after I arrived they called Ben in for his scan.

Next we met with the oncology social worker to go through a few questions we had written down. Ben really was not well for this. He ended up getting up half way through our meeting to head to the restrooms and I could tell he was struggling to even function at this point. We cut the meeting short and went off to our scheduled appointment with his oncologist. At this point Ben was in a wheelchair but in agony. His nurse, who has been with us since the beginning, saw us and arranged for a bed so that Ben could lay down and rest. Ben really didn't want to stay but he was encouraged to meet with his doctor, especially during this time.

We met with Ben's oncologist who went over the next steps of treatment with us. She also told us that she has assigned a pain and symptoms management doctor to Ben. This doctor will be working one on one with Ben to hopefully get him more comfortable and beating this pain he's been fighting. Right now the pain seems to really be coming from his liver, which as you know is full of cancer. Here are the next steps for Ben's treatment plan...

1. After talking to doctors in both Toronto and Hamilton we have learned that there are no clinical trials available to Ben as second lines of treatment at this time. Ben's oncologist, with the help of these doctors, has decided the best approach at this time would be that Ben continue on with chemo here in St.Catharines on a drug called Folfox. When Ben was first diagnosed this drug was an option for him to start with. We opted for FOLFIRI, the drug that Ben has now become resistant to, due to the side effects of numbness and tingling in his fingers and hands. Ben will receive treatment bi-weekly through his port, just like he has been over the past year. I asked the doctor the hard question today... How long do they think it will work? Textbook says this drug has a 10-15% chance of working for another 5-6 months. Ben and I both accepted this answer and moved on. Seems like we are getting used to this kind of stuff.
2. If and when this second line of treatment no longer works, a third line of treatment will be introduced. This will be that "expensive" drug I mentioned in my last post. We did find out that this drug has been covered under the Patient Assistance Program. (Thanks, God) Thankfully we have more options going forward.
3. Chemo treatments will resume next Wednesday for Ben. Back into the chemo room we go. Although, I'd rather be there with him than having no available treatments at all.
4. His oncologist was able to review the CT scan done this morning and everything is clear.

Ben is now home after a really busy and exhausting morning. He is resting and feeling much better after receiving an injection at the hospital today to help with the pain. So, on we go. Next steps.

Thank you for all the prayers for these treatments and funding to become available for us. We both wanted to apologize if we have not gotten back to you if you sent us a message. We are doing our best to respond! I promise!

Stand firm in faith; be courageous; be strong. - CT Scan Results.

September 27, 2017

Today Ben and I had our much anticipated visit with his doctor to review his CT scan results. Something told us both going into it that it wouldn't be good news. Ben has not had many good days over the past few weeks and something didn't feel right. They say usually when your gut is telling you something, it's right. Sure enough, we were given news today that I really wish I didn't have to share.

Ben's cancer has progressed in his liver and lungs. His CEA marker has increased, indicating the cancer has in fact gotten worse. Ben has become resistant to the first line of chemotherapy treatment that he has been receiving over the past year. It is no longer working for him. The news didn't really surprise Ben or I. Matter of fact we were both kind of excepting it. Something just hasn't been right and there was no way the CT scan was going to show improvement, at least that's what Ben and I thought. Still, the news does come with a lot of heart break and a lot of unknowns. Since the chemotherapy treatment isn't working Ben did not do his round of chemo today. Instead, we spent the next while talking with his nurse and doctor about our next steps. Here is the plan going forward. I've tried to break them down simply (maybe this will even help me)

1. Ben will stop his current chemotherapy treatment here in St. Catharines.
2. There is another drug that might be available as a second line of treatment. This drug is the #1 choice for next treatment suggested by his oncologist. But it is $10,000/ month. We have learned that this drug is not covered by our current private insurance company. A Drug Access Facilitator has been assigned to Ben's case to see if this drug could be covered by the Patient Assistance Program with compassion care. Clinically he does qualify but we will have to wait to see if they will for sure help. We have sent through an application for this and will hopefully hear within the week. This treatment would be given to Ben in St. Catharines. Please pray this becomes available to him!
3. IF this treatment is not an option, we will need to find another option. Ben's oncologist is contacting Sunnybrook in Toronto to search for any clinical trials.
4. IF the #1 choice of treatment isn't an option, and Sunnybrook does not have any clinical trials to offer Ben, he will be started on a second line of treatment here in St.Catharines which will be given the same way, every other week by his port and bottle.
5. We will meet with Ben's doctor again next week to make our decision based on what's available to us.

As you can see there are a lot of "IFs" here. So, we wait it out again until we hear what our next official steps are. Treatment will not cure Ben, as I have mentioned before. Any treatment going forward is given to prolong Ben's life here with us.

As I sit and write all of this down I feel sad reflecting on the past year and where we are today. Obviously this isn't what we wanted. It was only 15 months ago that Ben received his initial diagnosis and only 7 months ago we thought Ben was going to qualify for a life changing surgery, and now we are staring down the road of clinical trials and second line treatments. How and Why? We could ask those questions until we are blue in the face. The only thing we can continue to do at this point is keep looking to our God to keep us going and to comfort us. We will continue to pray for more days together, more good days for Ben; that he feels well to participate in activities and outings with me and the girls. Thank you to those who reached out to us today and remembered we were receiving these results. Thank you for keeping us in your thoughts and prayers. Please continue to stand with us in prayer.

1 Corinthians 16:13 

Be on your guard; stand firm in the faith; be courageous; be strong.

 

Just when I thought He wasn't looking

September 22, 2017

I have to chuckle as I go back to my last post which prematurely said goodbye to summer and welcomed fall. 30+ degree weather at the end of September, we’ll take it! Our family has been able to escape to the cottage a few more times and to be honest we’ve had the best beach days this month!

I felt compelled to write a post after experiencing some pretty crazy “God moments” this week. If you read my last post you will know I’ve been stuck in a season of doubt, anger, and depression. Getting out of this has been challenging. I’ve kind of withdrawn myself from people a bit. (I apologize if you feel this from me) With all of this I have been watching my husband’s health decline while raising two very busy kids. I mean, can you blame me for being a bit mad at God right now?  It’s been on my mind a lot lately that things will get worse before they get better and I’ve been just downright pissed off about that. But in God’s typical fashion in my life He has shown Himself to me a number of times this week and I just had to share this.

Painting done by ReChic Studio of Ben and the girls. 

As I sat in my “self pity”, God introduced me to a woman who stands in my shoes; a young mother with a husband battling stage 4 cancer. The difference? She not only has 2 children, but 4, she has no family or community close around her like we do. As I began to talk to her and share stories it immediately dawned on my how grateful I really am for the huge support group that stands with us. My heart broke for this woman who explained to me that she’s been bringing all 4 of her children to her husband’s bi-weekly chemotherapy treatments. I can’t even imagine that! (Thanks for the reminder of my many blessings, God) My week went on but I still felt down and out. A year going on this path really is starting to feel downright exhausting and to be honest I was starting to feel alone and “forgotten”. Every day I see my husband battling for his life and I’ve been doing my best to keep going for him and the girls. Just as that thought entered my mind I literally had 4 messages pop up in my inbox offering their hands to help, encouraging me in prayer, offering to bring a meal for our family AND pictures and videos of a recent fundraiser that had taken place to help Ben and I out during this time. (Okay God, I see you—I feel you – THANK YOU) I find it rather “weird”- for lack of a better word, that those messages were sent to me in a time of feeling defeated and empty. I had an “ah-ha” moment, sitting there reading each message and realizing very quickly that I have not been abandoned, I will never be abandoned, and that I need to have faith in my God to get me through this. (Yes- this is easier said then done, of course, but He just showed me this!) How do you look away when God shows Himself to you? How do you question His love for you when He helps you through your darkest days? It’s funny, as I write that I am actually reminding myself to come back to this post to remind myself of these things. I couldn’t continue on my day without sharing this with you. I know there have been a lot of prayers said for us and I needed to share how I felt God this past week.

In addition to this post, many of you have asked how Ben is doing lately. Let’s just say Ben seems to be having more “bad” days then good lately. He continues to struggle with pain and discomfort in his legs and back. We’ve noticed his legs, face and neck really swelling. This makes it very uncomfortable for him. Ben usually crawls up on the couch or in bed and spends a lot of his time there now. He battles nausea and vomiting, and stomach pains. I absolutely hate watching him go through this. I feel completely helpless. Brooke and Kendal have been so good with waking up in the morning and giving daddy a big hug! Ben loves this. So do I. He had his repeat CT scan on Monday and we are anxiously awaiting these results. We will most likely have these by Wednesday. I will post an update as usual.

Thank you for those who reached out to me this week. Additionally, thank you to those who helped and participated in the fundraiser for our family. Ben and I are feeling very much cared for and supported by you. You all continue to show us what real community, faith and friendship looks like. I can only hope to give back like you have given to me.  

Goodbye Summer

September 2, 2017

Chocolate chip pancakes with daddy!

Well, there goes summer.... just like that! Our family really did have a nice summer together. Time spent with friends and family at the cottage was memorable and relaxing, dinners and late night fires on our back deck had with friends made us feel grateful. Ben and I went into this summer doing our best to create as many memories as we could. We know that over the next year things will most likely change very drastically and aren't even sure we will be able to get back to the cottage like we did this summer. Thank you to those who dropped their busy schedules for us to help create those memories. Thank you to those who watched the girls for us so that Ben and I could spend the time together as well. We know everyone lives busy lives but we are continuously thankful for those who step back and take the time to be with us right now. After all, this really has been the hardest year of our lives.

It's been on my mind and heart a lot how fast this year just went and how scared I am to watch another year go by. We really have not a clue what next summer brings. We've been told by Ben's doctor that she wants to see him live for another year. Can you image being told those words about your spouse as you go home and hold your babies? Your perspective of life really changes. Things that seemed important at one time really aren't that important at all. I feel like our life as "The Janzen Family" is on a clock. I do my best not to live that way, but I can't deny that these are real feelings and thoughts that go through my mind a lot, more now as the year has passed and as Ben continues this battle with cancer.

Ben completed his 25th round of chemotherapy treatments this past Wednesday. That is a big number. I actually had a memory on my Facebook page show up from 1 year ago documenting his 5th chemo treatment. I couldn't believe I was getting a "memory" of this already. The chemotherapy hasn't effected how Ben looks. Matter of fact most people who see him say how great he looks! (which he does!) He has gained a lot of the weight he had lost back, plus some, and is looking quite healthy at first glance. But the fact of the matter is Ben is fighting stage 4 cancer regardless of looking "good". I think some people look at him and think he looks good, and so they think he is doing well. He's even been asked if he's doing side jobs while home on disability. (I'm not sure how to comment on that one....) I guess this is just a reminder to those who look at Ben and assume that things are fine, to go ahead and ask him how he's doing that day or how he's been doing because he really does look better than he's feeling. Ben has been able to manage a lot of his symptoms with medications. You would fall off your chair if you saw the bag of medications he takes daily, just to help him get through the day. I think his biggest challenge right now is fatigue, weakness and nausea. He does his best to get through this, he never complains, ever! I always say to think of yourself with the worst cold or flu you've ever had, and then times it by 100. That's what Ben is fighting, almost daily.

 The last appointment with Ben's doctor we reviewed his CT scan (this would have been in August- I posted this on my last blog post). The scan showed no progression of disease, but no change in disease either. To me this sets off alarm bells in my head. No change? So the chemo isn't doing anything? You see, cancer is smart. It starts to learn what is treatment and fights against it. Because there was no change in disease in his liver, lungs or colon, Ben will repeat this CT scan within the next few weeks to see if the cells have changed or not. I'm anxious about this scan. In my mind this is where things start to shift and change. This is where treatment plans might need to change, where our comfortable routine changes and things may effect him differently. We will post the results to the scan when we have them.

I've been struggling a lot with God's plan for us. I've been angry with God and have been feeling alone in my walk. Can he not see us struggling? Those who are closest to me will know I have been battling a very hard and long depression and some days find it extremely difficult to even get out of bed. I sleep a lot, and when I'm not sleeping I'm barely functioning or willing to participate in everyday life. Socializing with people has become exhausting for me. Parenting two toddlers has become very difficult for me. I don't understand why this is happening to us all at once, why the timing in our life seems so shitty and I feel like God is just standing on the sidelines right now. I'm sharing this very personal experience with you all because I recognize this as my weakness and know the power of prayer and am asking for those who read this blog to pray for me, and Ben. I've been struggling to bow my head in prayer. So, I ask for you to please say a prayer for us. I know the community we have behind us and I know that prayers will be said for us. I still believe God is with us, it's just really hard to see right now. In addition, please do not be "afraid" of Ben or I if you see us. Please don't feel like you can't approach us because you don't know what to say. I see this more and more and actually really appreciate being asked how we are doing. It is a reminder to me that you are with us and care for us. We are very open people and lean on others to help us right now.

Daddy and Kendal in her new ballet outfit <3

The fall season is coming and we have a few things to look forward to. We have a few trips booked, (pending Ben's health) but these trips give us something to look forward to and excitement for the future rather than dreading the days ahead. The girls are both registered for dance classes and swimming classes. It'll be a busy time for me I am sure, but I'm trying to plug myself into the girls and go into this reassuring myself that I can do all of this and to ask for help if I need it. The girls continue to not understand what is really going on and so we try our best to keep life as "normal" as possible for them. I'm excited for them and look forward to watching them grow in their new activities.

Well, I think I did my best to give you all an update on what's been going on over here. Best of luck to all the kids going back to school on Tuesday. As usual, I look forward to seeing all the photos of their first day back! As I wrap up this post I continue to ask for prayer for us during this time. I ask specifically for prayer for Ben, that he has the strength to get through each day, that he feels better and is able to participate with me and the girls more and prayer that both of our spirits are lifted during this time.

Dancing away!

loving life out on the boat at the cottage

2017 NOTL soccer 

St. Davids Carnival with our friends

22nd Round of Chemo and Test Results

August 2, 2017

Another month has come and gone. How quickly our summer seems to be going. Ben completed his 22nd chemotherapy treatment today. 1 full year of treatment behind him. It still amazes me how different our life is now, yet I am thankful for the good days!

Home after chemo today. Girls were so happy to see him
but Ben was exhausted.  He loves his girls!

Last month Ben completed 3 scans. One was a regular follow up CT scan, a bone scan (Ben's legs and knees have been really bothering him) and an MRI to evaluate Ben's back pain. We waited weeks for the results of these scans. If any of you have waited for results for a medical test you will understand some of the anxiety that we may have been feeling. Waiting on scans that pertain to cancer brings even more anxiety. The bone scan and MRI came back clear. (insert praise here). Ben's doctor believes the leg and knee pain may be associated with his chemotherapy. For now Ben is on a list of pain medication to try and keep this at bay. Ben's routine CT scan still shows disease in his colon, liver and lungs. The lung nodules don't appear to have decreased since starting back up with chemo in April. However, Ben's oncologist said the scan isn't 100% clear and isn't willing to say she thinks the cancer has progressed at this point. Ben will continue on the same chemo regimen and repeat this scan in 6 weeks. If the scan at that time shows progression of the disease (spreading or growth) then he will have to switch treatments. If the scan shows improvement then he will stay on the same course. Basically Ben has been back on chemo for 3 months and so far things haven't changed. The good news is Ben's CA level has decreased. (CA is a protein found in most cancer cells that is secreted into the blood steam and can be detected through a simple blood test) In April this was at 900. Today this is at 400. Ben's doctor is very happy to see this going down.

To be honest I'm not sure what to think of the news. When Ben started chemo a year ago his body responded dramatically to the chemo and showed a remarkable improvement and decreased disease each scan. With 3 months of chemo done and no change it does make me worry, but I am trying not to let my mind race right now. For now, Ben is doing pretty well and he looks great! Even his doctor made a comment about how well he looks. He is eating, gaining weight and enjoying his summer with me and the girls! Praise God for that too! Thank-you to Ben's parents for taking the girls for us yet again so that I can be with Ben during his treatment. Ben also planned a date night for us this week so the girls got to have a sleepover at grandpa and grandmas and Ben and I enjoyed dinner out and some much needed time together. Thank you!

Over the last few weeks we have had to do a lot of things that are out of our comfort zones and remain pretty challenging. For one, I took Brooke to McMaster Children's Hospital and signed a consent form for an upcoming surgery. Brooke will be heading in for surgery within the next 10 weeks.This surgery is to address an issue she was born with due to being a micropreemie. The surgery will be about 2-3 hours in length and she will have to stay over night. It is something that has been on my heart for her and I really wanted Ben here with me while she goes through this. We will keep you updated on Brooke as she goes through this. I mean, what's one more thing on our plate, right? The second thing was actually sitting down with our friend and financial advisor to prepare us for when the day comes that Ben does pass. We made a list of questions and felt the need to address them. We are feeling better about the future in that regard, yet I don't think that feeling in the bottom of my stomach will ever go away. Regardless, we are thankful to have a good friend to be there supporting us and helping us through this.

We have one full month left of summer and we are headed back up to the cottage for hopefully another great week with our girls. Thank you to those who continue to read the blog and check in with us! You are our lifeline!

Visit to Bala with the Girls

Fishing Trip with Josh & Matt.

St. David's Carnival 

Making use of our free Canada Park's passes 

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!