My, how quickly things change.

January 26, 2018

The girls first trip to the ocean. Missing daddy with us like crazy!

As most of you know the girls and I were away last week on a vacation to Mexico with my family. The 14 of us travelled together for the first time and the experience was wonderful! The weather was great, the company was exceptional and the time away to sit back and reflect was much needed. It was, however, the first time the girls and I have travelled without Ben. I won't say it was easy. I did have a lot of mental moments where I found myself sitting there, almost staring into the future, visualizing my life without Ben. It crushed me. In those moments I would text or call Ben just to remind myself that he is still here with me, to comfort me and support me. I will be honest when I say I cried a few times, especially at night when it was just me and the kids. My family was amazing though. Everyone helped me with the girls and allowed me to get my rest and always offered to lend a hand.

Ben went to Jordan and stayed with this parents for the week. This brought me a lot of comfort too. I never worried about him being cared for. I'm so thankful for his mom and dad.

The day before our flight left his home nurse came by and noticed an increase in swelling in Ben's feet and legs. So much so that she was very concerned and wanted him to go to the cancer centre in St. Catharines to have them looked at. Obviously with her being concerned, it spiked my own concern. We were planning on leaving that evening to Toronto to check into a hotel to catch our flight early Wednesday morning and now my head had completely switched from vacation mode, to getting my husband to the hospital for assessment. Thankfully we were seen in the urgent care area on the oncology floor, so we avoided the ER. A physician and nurse practitioner examined Ben and found his legs and feet to be very swollen, as well as his abdomen. There really was nothing they could do for him though. They gave him a few suggestions, like increasing his feet and increasing protein in his diet. Basically it was more of a reassurance for me to be able to leave Ben, knowing that he was OK for the time being.

Ben's routine Wednesday chemo schedule was set for the day of our return so his parents accompanied Ben to the hospital. Each Tuesday Ben does blood work to look for certain perimeters in his blood work that give them the thumbs up or thumbs down for chemo treatments. Ben has never had an issue with his blood work, until now. His blood work showed a very low protein (albumin), and a high bilirubin, indicating his liver is not functioning well. (As I have mentioned before, Ben's primary cancer is colorectal, spread to his liver and lungs) His oncologist didn't think it was a good idea to put more toxins into Ben's liver at this point. A CT scan has been booked for this Monday, January 29th, to really look at his liver function and the cancer and where it is at this point. We have been told they believe that Ben's chemotherapy is no longer working and we are now limited, if not exhausted, options for Ben's treatment for his cancer. The scan will show us for sure, but we are anticipating there are no more options for treatment.

Hearing all of this news while being in Mexico was very hard, but it also didn't surprise Ben or I. That doesn't make it easy though. Although you pray so hard for healing and time, sometimes that's not what God has in store for you. Our flight ended up being delayed a total of 12 hours, not flying out of Cancun until 3:45am on Thursday morning, so you can imagine how anxious I was to get home and see Ben.

Coming home after a week away I was prepared to jump into what I knew was going to be a very difficult time, yet I'm still not sure I'm fully prepared for what lies ahead. The first day back home I was thrown into telephone calls, e-mails and setting up appointments for Ben. Right now as things stand, Ben is no longer receiving chemotherapy. He is being seen by a team of doctors and nurses from a group called LHIN (previously known as CCAC) who work with Hospice Niagara who are now coming into the home to care for Ben with the help of his family doctor and oncologist. The team will assess Ben, make changes to his medications, if needed, to make sure he is comfortable and without pain, provide equipment and/or services to either him, the girls, or I, and when the time comes they will transfer him to hospice in St. Catharines. Yesterday we spent the morning and early part of the afternoon meeting most of this wonderful team. It was great to put a face to the names we had been previously given. I must say, this team is fantastic. Everyone is so kind and genuine to Ben and I during all of this. We went through some pretty difficult conversations yesterday. I'm still shocked at the strength God has instilled into the both of us.

A result of Ben's liver function due to cancer

The one nurse practitioner did an assessment on Ben yesterday and went through all of the information we really have been wanting to know, or confirm, really. We are basically looking at liver failure due to the metastases in Ben's liver. Some of the symptoms Ben has been experiencing from the failing of his liver are pain in the upper right abdomen and back, increased abdominal swelling, disorientation or confusion, severely swollen legs and feet, increased fatigue and increase in shortness of breath. His feet and legs have been so swollen he is now experiencing leakage from the fluid retention. Ben also has what they call petechiae all over his legs and feet. Petechiae are tiny, red spots on his skin that are basically caused by bleeding from under the skin. They can sometimes be painful to Ben, but not chronically. This is a sign of his liver function as well. What the nurses have done now (with the help of his oncologist) is increase some of his meds, arranged for a box of medications to be available to us on hand via liquid form in the event Ben can no longer swallow his medications by pill form, and set up home oxygen for him, after his oxygen sats yesterday showed to be borderline low and heart rate was low. They came into the home and taught me how to set everything up and use it. I have to say, I never in my entire life thought I would be 29-years-old, hooking up my 31-year-old husband to an oxygen tank. God, I'm still waiting for your lessons in "perfect timing" and "patience".

This is probably a lot of information for you to take in. It definitely was for us. Things are changing quicker than we initially anticipated. We are all still asking for prayers to get through this extremely challenging time. Prayer for peace, strength, positive thinking, quality family time, and peace in our heart that God has this under control, despite our wants. We will meet with Ben's doctors for the CT scan results and I will share an update then. Much love to you all for showing your support and following us along on this insane journey of love, life, and hope.

Water gun wars with papa

My family <3

Reality

January 10, 2017

At some point on a journey with terminal cancer you need to become realistic about what is actually happening, despite what you want. This happened to Ben and I yesterday. We arrived at the cancer centre for Ben's 33rd chemotherapy infusion, as well as 3 appointments that had been scheduled with his oncologist, his pain and symptom physician and the social worker we have been seeing occasionally. We knew today was going to be a long day, but we went in with positive attitudes and clear minds.

33rd chemo treatment. Friends next to our side.

We sat down with Ben's pain and symptom management physician first. I've mentioned this before but we love this doctor. She goes beyond the call of a physician, taking her time with you and really wanting to make sure you are okay and understand what is happening. Her main question for Ben today was how he has been feeling, like, really feeling. As mentioned in my last post, Ben has been spending an increased amount of time in bed. His exhaustion has increased and he has been experiencing discomfort and a pain like feeling in his abdomen and area surrounding his liver. With all of this information Ben's doctor looked at him and asked him some pretty real questions. Her biggest concern was Ben's quality of life. She told Ben she sees him sacrificing quality of life for time. That was hard to hear, and yet I've been seeing this happen with my own eyes. Ben has minimal quality of life. He may be able to get up and spend half a day out of bed, but then spends days if not weeks in bed afterwards. She really encouraged Ben to think about what it would look like to come off chemo and live the rest of his life to his fullest, with quality time, feeling more alert and awake, spending time with the girls and I, but knowing that he would be off the chemo and time would be precious. This thought scared Ben. I could tell. Tears came pouring down his face. Watching Ben completely broke my heart. He shared some personal struggles with the physician about how he feels about stopping the chemo at this point.  She wanted to pursue a CT scan sooner than planned to get his abdomen and liver looked at due to the discomfort. We continued on with the conversation and left the conversation open knowing we were meeting with his oncologist next.

We sat down with his oncologist and to our surprise the conversation was actually very much the same. She too saw Ben sacrificing his quality of life, pushing his body through chemo, somehow enduring the terrible side effects of 33 chemo infusions. She questioned Ben's wants and needs just the same. At one point I finally looked at her and asked what she thought, honestly, and what she thinks we should do. Her personal opinion was that instead of waiting the 4-6 weeks for a CT scan that was originally planned, we do a CT scan now and rule this chemo in or out and deal with the next steps now. I could tell Ben wasn't ready for this. I watched him try and process this information in his mind but could tell he just couldn't and didn't want to accept this next part. Ben has opted to continue on with the next few chemotherapy treatments, do a CT scan in the next 4-6 weeks and then deal with what is next after the results of the CT scan come. We are basically looking at 3 things.
1. The CT scan shows improvement so he stays on the current treatment (which we have been told is not likely- but huge miracles can happen?)
2. The CT scan shows no improvement and Ben stops chemo altogether. His pain will be managed by his doctor and he can expect his quality of life to improve being off chemo, giving him 2-3 months.
3. The CT scan shows no improvement and we head to Toronto for a clinical trial. This clinical trial is a phase 1 trial- meaning it has not yet been tested on humans, meaning symptoms and side effects are unknown. This would also mean we would need to travel back and forth to Toronto and Ben could have to stay over night as he is monitored.

This is the end stages of decision making with cancer. It brings you to a place mentally that is extremely challenging. I sat down last night trying to type up this post and just couldn't put the energy into it. I was too tired to even think. I watched Ben glare into space, he appeared far from me in his thinking and trying to process all of this. No one wants to hear that the only thing that will save you from dying is not working. I can't even imagine hearing that. And yet my husband sits here being handed this. I crawled into bed last night and for the first time in a long time I prayed, asking God to hold us through this and bring Ben comfort and peace during this time. I felt helpless. Completely hopeless. This is the moment I have been trying to mentally plan for since Ben was diagnosed, and yet still hoped and prayed it wouldn't actually happen.

Over the past 18 months God has shown himself to me in such raw, real ways. You think you have everything under control. I'm a planner, a type A individual and so I always thought I had everything just right, and if I didn't, I worked really hard to figure it out to control the situation. God continues to show me that he is in control, and that I am not. That he has this mysterious plan for me. Do you know how hard that has been for me to accept? I still don't understand why it involves my heart breaking and my family being torn apart in the process. Somehow I am still sitting here with this visual of me and God, my head on His shoulder, leaning on Him for comfort and guidance, Him hugging me and reminding me that He has everything in order for me. I won't say that, that visual makes this easier to watch your husband go through this, but it does give me a sense of peace and comfort. I can only pray and hope that Ben feels this same way going through this. I pray that God comforts Ben right now in ways that you and I can't. Please pray the same for Ben.

As things continue on I will do my best to share an update with everyone. I am still amazed at the people who come up to Ben or I and say "I've read your blog... how can I help you". You have taught us so much by loving us through this. We thank God for you. Know that I am saying a prayer for all of you as you witness our family go through all of this, how hard that would be for you too. Ben has certainly touched a lot of people and I thank God for him. We love you Ben!

Merry Christmas & "Happy" New Year

January 2, 2018

Here we are... a brand new year and another Christmas behind us. It feels pretty weird to be welcoming a new year when all you really want to do is rewind time. It was hard for me to celebrate this year. Still, all the holiday celebrations went on. 

Christmas was very busy for us, as I am sure it was for all of you. At the beginning of December we started off by gathering with my Dad’s side of the family. This is one of my favourite Christmas celebrations. Our family rents out Navy Hall in Niagara-on-the-Lake and consumes copious amounts of food provided by a fantastic caterer, as well as speciality drinks and luxurious decor put together by my cousin. This year the family played a neat gift exchange game that brought on a lot of laughter and fun. Ben managed to get through the day pretty well. He was definitely quiet and kept to himself a lot. I can tell he isn’t doing great when he does this. Nevertheless, the day was wonderful and it was great to spend the time with family. 

Me, Ben & Cate

Navy Hall Christmas gathering

Later that week we hosted our annual Christmas gathering with some of our closest friends. We have been doing this now for 8 years! Some thought I was crazy for hosting, but really it’s a lot easier on Ben; he doesn’t have to worry about travel, and if he feels unwell he can stay in the comfort of his own bed and come down to visit when he feels well enough to do so. Thankfully I had help setting up for the evening and Ben was able to rest. Still, he just managed to join everyone. I ended up waking him up about a half an hour before everyone arrived. During the evening Ben had to wonder upstairs to close his eyes for a bit. I found myself looking around the room for him, reminding myself that he needed the break. The evening was enjoyed by all. We are so grateful for our amazing friends. Every year we gather it reminds us how fortunate we are to be surrounded by incredible, loving, Godly, friends. 

8th annual Christmas gathering

In between the gatherings Brooke and Kendal   participated in their very first dance recitals! Both girls wowed us as they danced their hearts out. I looked over to Ben seeing the biggest smile on his face, the proudest dad I have ever seen. Tears streamed down my face. I couldn't stop. I was so glad he was well enough to even get up and come. It meant the world to our girls. (Pictures below)

Christmas Eve was celebrated at my in-laws home in Jordan. As Ben and I loaded up his truck I took a spill on our front walkway twisting my ankle. The pain was instant and intense! I couldn’t get up without Ben’s help. Thankfully Brooke was with me and was able to go and get him. I managed to get up and limp my way into the truck. I spent all of Christmas Eve in the lazy boy at my in laws with my foot up and covered by an icepack. We enjoyed an early lunch/dinner followed by lots of family time. I could tell Ben was not doing great. In the evening we spent more time gathered together and I couldn’t help but notice Ben falling asleep, he just wasn't able to stay awake. We ended up cutting the night a bit shorter than usual to get him home to his own bed. The day was very nice. The girls had a blast spending time outside with the family.

Christmas morning 

Christmas Day was fun, and completely exhausting! (haha) The girls woke up nice and early and ran downstairs to find what Santa had left behind. Watching their eyes light up makes my heart burst! Christmas as an adult with young children certainly is a lot of fun! We spent all morning opening their gifts and playing with all their new things. What lucky girls they are! Mid-morning my aunt came over to help prep the 18 pound turkey our family was going to devour for dinner.  Everyone on my side of the family arrived mid-afternoon for the Christmas Day celebrations, 18 people in total. About half way through our afternoon of finger foods and drinks we realized the oven had “magically” shut off and wasn’t cooking the turkey! We ended up eating a few hours later than planned, but the turkey turned out great! Ben was upstairs sleeping most of the time. He was really exhausted. He managed to participate in our family gift exchange, as well as eat dinner with us, but it wasn’t long before he returned to bed. It hurt my heart to have to go upstairs and check on him occasionally, only to find him sitting up sleeping. I hated him missing out and not being the fun Ben he used to be. I think that’s what I miss the most… the “old” Ben. He isn’t the same person anymore. This cancer has completely robbed him of his old self. I genuinely miss him hoping down the stairs with his vibrant personality, singing a song out loud off tune and helping me host these type of events. When evening came and everyone had gone home, I put the girls to bed and Ben had gone to bed and I sat in our living room reflecting on the past few days. I was exhausted. The hustle and bustle really added up. Tears came to my eyes thinking about not having Ben next to me in that moment, instead he was heavily sleeping, fighting this stupid cancer. I find myself alone a lot in those moments. It’s a grieving stage already, missing him being healthy enough to even just sit next to me. 

Christmas came and went and New Years was approaching. Ben and I actually spent our New Years apart this year, probably the first time in 10 years! At first I really struggled with that thought, but it ended up being fine. The girls and I travelled up to our family cottage with my sister, my nieces, and my parents. Ben was really not feeling well so he stayed back with his parents. I was really glad that Ben was able to be there. Before I left I was really worried about him being alone. It didn’t sit well with me. Knowing that he was being taken care of and if anything happened he was with them brought much comfort to me.

ringing in a new year with the girls

Ben and his parents celebrating New Years

The girls and I had a great time at the cottage, but missed Ben terribly! We all did. The weather sat around -23 to -27*C, feeling like -30. It was frigid, but we still managed to have fun outside! Snowmobiling with the family was a blast! The girls also had a great time GT snow racing. We were all really bummed that Ben couldn’t come and enjoy that with us. He would have loved it, and we all kept saying that. When we counted down the minutes to 2018, I sat with my sister and my parents welcoming a year that we all know will be even harder than the last. That was the hardest part about using the word “happy” - Happy New Year… can we actually use the word “happy” knowing that his journey will continue to get harder and harder? I came across so many people and articles on social media sharing their expectations and excitement for 2018. I sat there completely terrified. Almost dreading the clock going forward. I could feel my mind starting to panic and my heart starting to break with just the thought of everything. My family was such a great support though. Playing games and enjoying quality time with just my sister and my parents was exactly what I needed.

cousins

out on the lake!

The holiday season really did fly by and yet my Christmas tree still stands in our living room. I’m having a hard time taking it down. Taking it down represents a new season and how fast our time is going. It also scares me that there is a possibility that I wont have Ben next year this time. Why would I want to rush that? For now I’ll just embrace it until I’m ready to fully take it down. 

We really did have a wonderful Christmas. It was great to be surrounded by friends and family, as well as people helping us prepare for Christmas, deliver meals, help me shovel the driveway and so much more. If I needed help all I had to do was ask and I had someone at our door within an hour willing to help me in anyway. We felt very loved and supported, especially during this time. Thank you!

In between Christmas and New years Ben completed his 32nd chemo treatment. Treatment day was another long one. 6 hours at the hospital. We were both ready for home. Ben has been tolerating this new drug fairly well. His biggest side effects have been extreme acne, which he has never struggled with, so this is hard for him, and a very active ostomy bag. Both of these have been very difficult for Ben. Still, I never hear him complain. I don’t know how he does that. Ben will have his third treatment with this drug on January 10th, at which point we will meet with his oncologist again to discuss a scan date to see how he is responding to this drug. 

It’s starting to get harder watching him battle this disease. He spends 90% of his time bedridden and sleeping. Last week I had to head out and do a few errands to prep for Christmas. I had called him and sent him a few messages making sure he was okay. Finally Ben text messaged me saying he didn’t even have the energy to look at his phone let alone return my calls or messages. I realized in that moment how fortunate I am to be healthy enough to get up and go out the door to do errands. Yes, I was tried, and yes, I was feeling stressed and pretty anxious, but this is nothing like what Ben is fighting. How I quickly took that for granted. I think we all do. 

So, here we are. 2018. The first few weeks of 2018 hold a bit of excitement for the girls and I. Last year our family booked an all inclusive trip to the Mayan Rivera in Mexico. The 15 of us booked the vacation last January replacing gift giving this year. In November, Ben and I had to make the big decision whether or not he was coming along. Ben made the very difficult decision to stay behind due to his health at this time. I’m so sad he will be missing out on this vacation but it brings comfort to me knowing that he will be safe at home and we wont have to deal with any health concerns during our travels. I’ve made it clear to Ben that the girls and I will cancel our trip, even the day of if his health declines rapidly, and we will fly home as fast as we can need be. For now, the girls and I are 2 weeks away from boarding a plane with 12 of our family members heading to the sun and heat. It’s adding excitement into our lives, which is good. We need that. But again, we will miss daddy terribly! (thank goodness for facetime!)

We hope all of you had a wonderful Christmas. We wish all of you a healthy new year. We ask for continued prayer for 2018; that we continue to have the strength to go on, that Ben’s side effects are minimal, that he is able to be up more and participate more, that I have the patience to parent the girls during stressful and anxious times, and that our family can enjoy good days together without Ben feeling ill and bedridden. So, here’s to 2018- may you not be as scary as we think you are. 

Brooke & Addison- Navy Hall Christmas Gathering

Kendal & Brooke getting ready for "Jingle & Bling" day at school.

Kendal's first ballet recital

Proud parents, good friends.

bundled for a snowmobile ride!

snow covered dock/lake

GT snow racing!

Kendal & I 

like riding a bike. 

Christmas Day Dinner 

trail riding

Love you baby