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