Life Keeps Going

August 23, 2018

Another summer has come and gone, just like that. Here we are slowly getting ready for the kids to go back to school. It's amazing how fast time continues to go.

I felt compelled to jump on the blog for a quick update on how the girls and I are actually doing. I get asked quite often and I am thankful for those who still send e-mails or text messages to check in with me.

Our summer was busy. We spent a lot of our time at the cottage, which was pretty awesome. I worked 3 days a week, went up for 4, and repeated this each week. Living the life! Being on the water and creating new memories was actually a breath of fresh air for me. Sure, it was hard at first, but I'm amazed at how quickly I adapted to our "new life". The biggest adjustment for me has been the single parenting. There is a lot of room for improvement in that area. I can honestly say it is the hardest part. Cheers to those who do this. I give you a lot of credit.

To be honest, the girls and I are doing really well. Life before was extremely stressful on me. Over the course of 10 years I lost myself. I lost my voice, my smile, my happiness. Each year just seemed to get more and more complicated and it was an absolute mess. There is SO much this blog never touched, for personal reasons. I've now been able to sit back and reflect on that time. I often find myself saying, "What the hell actually just happened to me!?" I recently had a very good friend look at me and say, "Amy, you're back!" Hearing this brought tears to my eyes, because I can feel that! This journey of grief and growth has been very different for me. It's not all bad, as bad as that might sound to some of you reading this. You need to walk in my shoes to understand what I actually mean by this. (But really, I hope you never have to).

I am currently still in the middle of a legal situation regarding Life Insurance. I wont go into details about this- but for those who ask... it is still ongoing.

Regardless, I have been encouraged to look at life differently and want better for myself and others. I continue to strive for happiness, for love, and for the rest of my life to be lived with nothing but GOOD things going forward. I don't want stress and heartache to control me anymore. I will not have negative people around me. I can't anymore. I will keep going and I want to keep going. I am excited for what my future, and my girls future, has in store.

Best of luck to all the kiddies heading back to school in the next few weeks. I look forward to seeing all of your first day photos. As always, thank-you for keeping the girls and I in your thoughts and prayers and for always showing us how loved we are by all of you.

June update on the Janzen Family/ Brooke's upcoming Surgery

June 5, 2018

Standing on the dock overlooking the lake, I can feel him the most. The wind blowing through my hair and the sun on my face; it’s like he’s here with me. Tears come to my eyes and I am overwhelmed by the fact that he will never be able to spend another day or create another memory here at the cottage with the girls and I. My heart hurts, breaks, and I can feel a rush of warmth that comes over me, a grief so deep that I’m not sure I can continue standing there. I can visualize him approaching the dock in his fishing boat, something he used to do every single day we were there together. And then, without warning, I realize the people around me again, the warmth of the sun on my face feels calming, the sound of the lake comforts me and I smile; hi Ben. 

After Ben died my memory of him was before he was sick, all the times we spent together. The other night I found myself wake abruptly at 1:00am and a flood of memories came back to being the caregiver of someone with cancer. I lay in bed thinking of how much Ben had to endure over the 18 months he fought that stupid cancer. His ostomy bag. Nights of waking up dealing with an ostomy bag that would explode after chemo. Never did I envision myself having to clean up fecal matter all over floors, beds, walls, bathrooms, sinks and cleaning up Ben himself. During an episode like that Ben and I would normally not speak, we just did what we had to do to clean it up; a silence that indicated clearly what the both of us were thinking. The vomiting... Laying in bed or playing with the girls and watching him run to the bathroom and violently vomit more than once. The nose bleeds.... They came without warning. And bad. 

I’m not sure why these things came to a head. I got up and crawled into bed with Kendal, something I will usually do when I’m feeling overwhelmed by my thoughts, crawl into bed with one of my babies. My mind instantly went to being thankful that Ben doesn’t have to deal with that shit anymore. I imagined him perfect; healthy. Doing the things that Ben loved to do again. And then I missed him... missed the opportunity to see him healthy again. How I wish he was here and healthy. This is what grief does. That’s what the rollercoaster is like. Up and down, during the day, in the middle of the night, it doesn’t matter. Your mind takes off in waves, sometimes crashing hard. 

I’m approaching 4 months without my Ben. I have to admit, I’m doing better than I thought. I give that credit to accepting a new job, which I am enjoying immensely, having my brother move in with me to help me transition into my new “normal” and the newest addition to our family, Chloe, our sweet new puppy. My brother is one of the most selfless and caring people I know. After hitting my “rock bottom” he moved from Toronto into my house with the girls and I to help me. I don’t think I would have been able to do what I’m doing right now without him. He helps me get the girls up each morning, helps me get them out the door to school/daycare, helps pick them up when I need him, helps cook, clean, organize, and emotionally supports me. I can’t thank him enough for taking this time to help me right now. I also need to thank his partner, Cole, for kindly agreeing that Jake come and support the girls and I at this time. The two of you are the kindest souls. THANK YOU! 

Uncle Jake playing "Match" with Brooke.

The girls and I picked up our sweet new pupypy, Chloe, a few weekends ago. She was something I had been thinking about even when Ben got sick. Of course, I wasn’t about to take on a puppy at that time- a very sick husband and two young kids… that was enough. However, I have found myself lonely. Not lonely because I don’t have people around me, but lonely in the sense of wanting someone to love me and cuddle and love me without judgement. Insert, Chloe. My sweet, kind, fun loving, 90% obedient (haha) 11 week old puppy who offers snuggles and kisses just about every minute of the day and welcomes me joyfully at the door when I come home. Coming up to the 4 month mark of losing my Ben I still found myself sleeping on my side of the bed. I hadn’t found my way to the middle, or Ben’s side. Once and while I’d reach over and feel the empty space. It brings tears to my eyes knowing Ben will never fill that space again. Chloe has forced me to wiggle my way over to the “other side” so that she can see me from the floor in her bed while she sleeps. There is something to be said for these little companions in a time of sadness and grief. My little therapy dog. You may be lucky to have me, but I am certainly lucky to have you!

My biggest current stressor is my insurance. I hurt just thinking about it. Just when I think I am doing okay and I am able to 100% focus on my girls and adjust to life without Ben, I am quickly reminded and forced to deal with things that send my heart into a deep sadness. I can’t even begin to imagine what Ben would be thinking watching me have to deal with all of this, on top of everything else. I don’t wish this situation upon anyone. I will not go into detail about this, but know this is still an ongoing issue. 

I’m confused on how God could possibly think that I am capable of dealing with more hurt and sadness. Isn’t watching your husband die of a cruel illness at the age of 32 with two young children enough? Isn’t leaving me here to do this alone enough? Why would God add one more thing to my plate? I need the financial help to keep the girls and I in the house Ben and I “built”. My heart is truly aching. I am, yet again, finding myself in the position of needing and accepting help from others. Some day, I hope I can be that help to others.  

Another thing I am struggling with is social media. Anyone who knows me knows I enjoy posting pictures and sharing stories on Facebook or Instagram. I still do this, but it’s not my full story. Missing Ben terribly and legally taking on something that is emotionally hard for me, all while watching families enjoy their summer vacations, bringing new babies into the world, celebrating anniversaries, weddings...I’m sad to think those are the things I have lost and miss the most. I apologize if it takes me longer to respond to your messages on Facebook or Instagram. Some days I remove myself completely so it doesn’t hurt so much.    

I am going to end this blog post off with a big prayer request for my oldest daughter, Brooke. This Thursday Brooke will be going in for a 3 1/2 hour surgery at McMaster. She will be admitted for a few days to recover. This surgery has been rescheduled numerous times to accommodate Ben when he was sick. The last date was even schedule for February 1st, the day Ben was admitted into hospice. Obviously, I postponed the surgery. I did everything I could to try and schedule this surgery for when Ben was here. I wanted him to be here for Brooke. He had a way with calming her down and encouraging her, something he did better than me. This surgery is a private surgery, something that Brooke was born with as a result of being a 24 week old mircopreemie. This will be Brooke’s 5th surgery since she was born. To say I’m not nervous would be a lie. Up until a few days ago I didn’t think much of it, but the thought now of going through this all without Ben is creating a sadness in me that is very difficult to get through. I am thankful for my family who will be helping me get through this weekend, as well as watching Kendal and our new pup, Chloe.  

Brooke at her Pre-op in Hamilton

I will share a blog post once Brooke is in recovery to update everyone on her status. Thank you all for continuing to follow along on our journey. I am in awe of the people who come up to me and continue to encourage me to keep writing. I am thankful for you, as this blog really has been a big help for me. Say a prayer for Brooke and I this week. I'm not sure I have it in me to do it myself. 

Where are you, Lord?

April 20, 2018

Brooke's drawing I found in her backpack from school yesterday

Imagine yourself holding a balloon tied to a string in a wind storm. The balloon is whipping around in the air, out of your control. You are holding onto it with all your might and within seconds the balloon slips from your finger tips and soars into the sky going higher and higher until you can no longer see it. This is what my faith looks like right now. Hanging onto that string of hope, but seeing it slip from my finger tips.


Last week I spent 5 days in hospital in the crisis assessment mental health unit after receiving an e-mail that there are issues processing my life insurance claim, something that the girls and I are heavily relying on to keep going forward without Ben. This traumatic nightmare doesn't seem to be ending. My 5 days in hospital allowed me to sleep and try and get myself back on my feet but I am struggling. Panic, high anxiety and a deep sadness are things I am faced with on a daily basis right now. I was doing a lot better until I received that one e-mail. You see, like many people, Ben and I thought we were doing the right thing by committing to a monthly payment that would provide us with life insurance in the event that one of us should pass. No one signs on the dotted line, commits to making a monthly payment just for fun. We were a young family on a budget. That monthly payment we made to this company was a jump for us but we made it work. We were investing in our future in the event that him, or I, were left with the responsibilities of raising two children on our own, paying a mortgage and of course all the other expenses that come along with life. There were many times through Ben's illness that he would look over to me and say, "Amy, I know this is going to be really hard for you when I am gone, but I am so thankful that you will have this life insurance money so that you can raise the girls in our home and not be stressed financially". Those words stuck with me. It was the only way sometimes that I could keep going forward. Knowing that we had planned for this and that I could spend the time trying to get back on my feet, helping our daughters grieve the loss of their daddy, but not have to worry financially brought me some comfort. Unfortunately, people who don't even know you are left to decided whether to accept or deny your claims. And thus begins, an extremely challenging time in my life, yet again, a legal situation while grieving the loss of the one person I loved with all my being, all while struggling with high anxiety that this situation can be resolved.

The constant life battle I seem to keep facing, as well as the loss of my family unit, is making me feel like my God is so far away. I have been faced with years of stress and huge life changes. If He doesn't want us to struggle or hurt, why are we struggling and hurting? I cannot tell you how much time I have spent on my hands in knees in prayer asking God to help me. I feel like I'm pleading with the air at this point.

I distinctly remember the first summer Ben was on chemotherapy. Our sweet Kendal was just over a year old. Now imagine this... your one year old baby is sound asleep in her crib, her night light glowing in the room. She is cuddled up tight under her covers. You walk in to check on her after a day filled with bad news that your 30-year-old husband will not survive his cancer diagnosis. What do you do? How do you feel? I remember placing both my hands on her crib, staring down at our precious baby and crying, heaving out to God... "Lord, this is my family in which you have blessed me with. This baby girl needs her daddy. I want her daddy to be here for her. He can't miss her life. Please Lord, heal my husband so that our family can be together". I felt myself slide down the side of her crib onto the floor, sitting next to her while she slept, weeping, pleading with God. I eventually found the energy to get up off the floor and crawl into bed next to my dying husband and fell asleep. My husband passed away almost 3 months ago now. Did he hear my cries?

Month after month I am asking God if he is still here, do you hear me? do you hear any of the prayers that are being called out on my behalf? Because I'm starting to feel like my voice is just something I hear alone. Yesterday I went to visit the cemetery where my Ben lay to rest. Standing over the pile of dirt and staring at his name on the marker in the ground, I just wept. The burden has been too heavy. I asked if he could see what I am having to deal with and cried out that I missed him so much. Lord, where are you?? Can you not hear my cries??

It is so easy for someone who has not found themselves in these shoes to say "be strong" "have faith" "don't give up" "don't worry"... Spending 5 days in hospital being treated for a mental break down was my lowest. Those days were the most challenging days, even compared to the week when I had to bury my husband. Please be patient with me. I am not looking for advice, I am simply looking for love and support at this time.

Thank you to my family and closest friends who helped me get back on my feet last week. For caring for my babies while I take a timeout. For visiting me in the hospital to remind me that I am not alone. For those who went to my house and did a huge spring cleaning for me so it wasn't on my plate. For the meals. For the non-stop support. I know I am loved. I feel the love every day from you. Thank you.

I would take this time to ask for prayer requests, but I really am feeling defeated by prayer. Maybe, if your reading this, you can find it in your heart to figure that out for me. I hope some day soon I can log into this blog and start writing about good things, fun things, insightful things. For now, I continue to walk this difficult path and am needing the support of others at this time. I am doing my best every day to comfort my 5-year-old in her grief and reminded everyday how much the girls miss Ben. I need my army of supporters to continue to walk with me. Matter of fact, I need the army to walk in front of me and help carry the girls and I at this point. I wish you where here Ben, for all of this wouldn't be so hard.

 

March in a nutshell.

March 25, 2018

I guess it's true what they say about grieving- you will hit highs and lows out of nowhere. You think you know what it will be like, and then your in it, and it's really nothing like you thought. At least this is what has happened to me. I have lost people close to me and that grief was nothing like I am experiencing. I have lost the closest person to me. Every night I go to bed with my thoughts on Ben, staring at his side of the bed and praying for God to lead me in the direction I am supposed to go now and every morning I rise to be reminded he is not here.

I'm in awe of what I have actually learned over the past 8 years. What most people don't understand is that my life has been packed with extraordinary circumstances. After losing Ben I have had a lot of time to sit with my own mind and try and process what just happened. In my opinion 8 years is a great length of time to endure "extraordinary circumstances", one after another, after another, and then have it end with death. I find myself now trying to figure out where I see myself going, trying to figure out who I am and how all of these situations have shaped me. There are times I find myself feeling like the world is at my fingertips; I can conquer anything if I have conquered this, I can help those who now find themselves in the shoes I have already walked. And then there are times where all I want to do is sleep, not parent, and not deal with the load of the day. I recently took the girls to Disney on Ice. The show featured Moana, one of the girls favourite Disney movies. Sitting with the girls and thinking about Ben while watching the show I couldn't help but become overwhelmed by the words to one of the songs in Moana. It says...

The people you love will change you

the things you have learned will guide you

and nothing on earth can silence

the quiet voice still inside you

And when that voice starts to whisper

"Moana, you've come so far"

Moana listen, do you know who you are?

I am being forced to create a new life right now. One that looks completely different than I had ever thought. I feel his massive responsibility to provide for my girls, make the right decisions, become this "perfect" mother, who, by the way, is struggling hard in the parenting department. Grieving is one thing. Grieving with two extremely busy children is... selfless, draining and life altering. I mean, this entire experience has been life altering, but watching two young children try and figure out where their dad went when your barely able to get up in the morning because you miss your husband so much it hurts every bone in your body while one of them is yelling at you for breakfast and the other needs to be at school in half an hour... I just can't even explain to you what this does to an individual. How much this changes someone. Sure, I have days I wake up and am able to recognize the positive and the blessings that are before me. But I can't always be "positive Patty", and frankly, I think that's OK.

I am extraordinarily grateful for my closest friends who are dropping everything for me and the girls. God has certainly blessed me with the most amazing friends. Ben's closets guy friends have sort of taken me under their wings, along with their amazing wives, and help me with anything that the girls and I need. I need the daily check ins and the daily reminders that I am being thought of and prayed for. You don't understand how helpful this actually is for me. I am equally grateful for my aunt who sends me at least two messages a day making sure I am okay and asking if I need company. My Life Group from church is the closest I can get to feeling like Ben is in the room. We have been doing life together for 7 years and when I am with them, I feel like I am sitting with Ben. This group has been an exceptional part of our lives and I am so grateful for them. You who continue to check in with me on a daily basis- my how much you mean to me!

Kendie <3

This week I am preparing for Kendal's third birthday. She's 3, and yet I feel like she was born so long ago. So much has happened since she was born. So much most of you aren't even aware of. My heart breaks for Kendal. Her daddy was diagnosed with cancer just after her 1st birthday. All she knows of her daddy is him being sick. I'm sad she never got to really know Ben. She would have LOVED him. I mean, she did love him, but he was so sick her first few years that I feel like she really missed the energy, the fun daddy that even Brooke got for a few more years. Our babies keep growing without you. It's a painful feeling in my chest. Maybe just say a little prayer for me to get through this week and the "first" birthday without Ben here.

I'm going to try my best to post more on the blog about what I've been learning about grief, what's going on in our lives after losing Ben, and where we are headed. I'm going to ask for prayer for myself. I am feeling really lost without Ben. I don't know what I'm supposed to be doing or where I am supposed to go. I've been praying that God opens doors for me and it's clear to me that the decisions I am making are the right ones. For me, and the girls.

Kendal and her daddy- February 2, 2018 at Hospice. 4 days before he passed away. He was still trying so hard to play with them.

March break fun. Sky Wheel in Niagara Falls

His Mercies are New Every Morning

February 17, 2018

How do I even start this blog entry. It’s been one week since I lost my husband, one whole week. 

Last week, February 7th, was the last day I kissed him, hugged him and told him how much I loved him. When you saw Ben, he looked sick, but not like he was approaching death within hours. He was eating, drinking, talking. He sat and visited with everyone who came into Hospice. On February 7th Ben and I even sat with our counsellor for an hour and talked about what death looked like to Ben, his fears, his legacy, his life. My dad visited that day and while Ben was sleeping we reminisced about Ben’s favourite things, time at the cottage and how we couldn’t believe where we were that day. Around 6pm that evening my sister came by with my nieces and Ben woke with a huge smile on his face asking the girls how their dance classes went and how school was going. All we could do was laugh at how he slept all day, but managed to get up and entertain his nieces. In the middle of their visit Ben got up to use the washroom when things took a drastic turn. Ben’s ostomy bag was filling with blood. He called me into the washroom in a panic and I paged the nurses on call for assistance. Ben’s bag filled continuously. The nurses helped him as I sat and watched in awe. My sister took the girls home and my dad left so I could attend to Ben. Shortly after they left Ben’s bag filled yet again, alarming the nurses, calling the on call physician and telling me I should phone our family and closest friends to come and be with Ben. They gave me the look of “this is it”. All I remember is somehow being calm, watching Ben and the nurses around me. They were able to get Ben back into bed as family members filed into the room surrounding him. To all of our surprise, my husband managed to have a plate of pasta heated and served to him in the midst of what was most likely an internal hemorrhage caused by the extensively growing tumours throughout Ben’s body. (This will explain our last picture together above showing the large plate of pasta in front of Ben) Just a few minutes after that photo was taken, Ben’s bag filled yet again, pushing all of our friends and family out of the room as nurses and doctors came in to deal with what would be the last few hours of Ben’s life. Ben managed to lose about 50% of his blood in a very short period of time. I watched as the nurses worked to settle Ben, to get him as comfortable as possible since he was in so much pain. I watched my husband, my love, fight harder than he has ever fought in those last hours. Once the doctors were able to get Ben comfortable, he rolled over to his side, curled up into a ball, and surrounded by his family and closest friends, we watched Ben close his eyes and take his last breaths. I have never experienced something so heartbreaking in my entire life. The person who filled my life, who gave me my babies, who loved me so unconditionally was gone. 

visit from my sister and nieces

Daddy and his girls a few days before his passing

The first week of grieving my husband has taught me a lot. I didn’t know grief could be as simple as seeing his clothes hanging in his closet, opening the vanity drawer to grab my toothbrush only to see his tooth brush sitting there, hearing my phone go off only to pray and hope the messages are from him, going into the garage and seeing his tools, his white hardhat he wore proudly at work, his work boots still sitting there. People don’t mention these little things. But they are the hardest. All of his belongings were brought back to me from Hospice and put in our room. I have been sleeping with Brooke since Ben passed. I went into our room and saw everything lying there and broke down uncontrollably. My best friend and sister just held me. I had his eye glasses in my hand, his wallet and his camo bag he carried around with him everywhere, just sitting on my lap. I have learned that losing your husband (or wife) is much different than losing another family member or friend. Your life has been built together, everything you do was done together, for your family. I struggled watching as everyone else got to go home with their significant other and I was sitting there losing my life as I knew it. Simple tasks like driving a car, attending an appointment or even picking up Brooke from school simply exhaust me. I watch as everyone else seems to just skip through each day with energy and enthusiasm and I literally can’t get myself out of bed. A good family friend of mine who lost her husband a few years ago sat with me over a glass of wine the other night and said “grief is like fear”. That’s exactly how grief feels to me. Fear of Ben never coming back, fear of how I am going to raise our daughters alone, fear of how I am going to go back to work and what that is going to look like, the deep down inside you fear that makes your stomach flip and makes you feel ill. It comes in waves. Sometimes completely out of nowhere. 

I look at this picture everyday. I miss him so much it hurts.

Brooke and Kendal have been such a good support for me. My sweet little Kendal hugs me and comforts me in the times where I feel like giving up, “mommy, I love you so much”. My strong, beautiful Brooke, how my heart is just hurting for her right now. She is trying so hard to figure out what just happened. She asks me the hardest questions, questions that bring tears to my eyes and all I can do is hug her and lay with her. I am asked daily when daddy will be home. Oh my beautiful girl, how I pray for you in the midst of this storm. How I hope life for you is not so painful and hard on you. 

As Brooke, Kendal and I adjust to life as three, I am thankful for my mom who has dropped her entire life for me right now. She has essentially moved in to help me with the girls as I wake every morning to the reality of losing Ben. Mom, thank you for carrying me right now, loving me and loving the girls. I am equally thankful for my best friends and close family who come over almost every night and sit with me, cry with me, and laugh with me right now. Being alone right now scares me so I am thankful for a house filled with the closest people to me right now. 

My prayer requests today are for Brooke, that God helps her little heart through this. For me, that the panic in me right now is replaced with peace and good memories rather than replaying in my head what just happened over the past week. 

Thank you for those who attended the visitation and funeral this past week. The support from each of you who came will always be remembered. I am in awe of how God has used both Ben and I through this. I hope God continues to use me in ways that I can learn and grow. I am so unbelievably thankful for community, for friends, for family. I say that all the time, but it is so true. You all need to know how much YOU have touched MY heart. God continues to bless me through this storm. I see Him through all of you and how kind and gentle you all are towards me and the girls. Thank you.

As I wake to everyday going forward, I am comforted by this single bible verse.... "His mercies are new every morning..." -Lamintations 3:23. Every morning I rise I am trying to remind myself of this verse. I have this visual of the sun shining, God smiling, and gifting me a new day to heal, breath and learn through this. How great is our God. His mercies are new every single morning.

In his happy place

My first tattoo. My favourite bible verse. Something I hear God saying to me, as well as Ben.  

  

Hospice

February 1, 2018

The day has come. Ben was admitted into Hospice Niagara today. This decision has been by far the hardest decision of Ben's life to actually go. Ben's CT scan earlier this week showed a significnat increase in disease in Ben's liver and lungs. Chemotherapy is no longer an option and there are no clinical trials available. When Ben was first diagnosed him and I agreed that it would probably be a good idea to go the hospice route with having two young children. We didn't want the girls to watch Ben suffer. We wanted their home to remain a safe place for them where they felt comfortable and happy. With this came a very difficult decision for Ben though. When the time actually came this week to make the decision I watched his heart completely break knowing he was leaving our family home. Not only did his heart break, mine did too. We spent at least two days talking with his doctors, nurses and family about actually going. A bed ended up becoming available and Ben decided to go. Today has been one of the hardest steps of this journey so far. Packing up my husbands things, getting him in the car and driving him to hospice where he will be cared for until his time comes to be with our Lord.... I can't even begin to tell you the pain I felt in my chest. Ben was amazing though. He packed up his things without hesitation, walked in and met the staff and in good ol' Ben fashion joked around with all the nurses and administrative staff. He's such a joker, lightening the mood for everyone. We spent the day with Ben, unpacking his stuff and touring the facilities. I am thankful for the on hand care Ben will receive while he is in hospice, but it will definately be a transition for our family. The coming and going, making sure the girls are with someone, visiting and visitors.... It's all new and new right now can bring on a lot of anxieties, so we are relying on God to help us through this next step.

At this time we are asking for privacy as our family adjusts to Ben in hospice. This is a huge transition for us and we love you all and all of your support, but we need the time right now to be together. Please don't hesitate to reach out to Ben or I via e-mails, Facebook messages or text. We will do our best to return your messages. When the time is right, visiting may be arranged through Ben or I. Thank you all for your patience and support during this time.

Brooke giving daddy a big hug!

Visiting daddy today, seeing his new room. 

Special gifts from daddy so they can remember him at home <3 

     

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