Day 100 – but not the kind to be celebrated

Today marks 100 days and nights of being in hospital and away from the family since Jacobs diagnosis on the first day of summer. Away from everything I knew that was normal. Today also marks 60 days consecutively of being away since Jacobs amputation. Many people celebrate day 100 of something. 100 days clean of a bad habit. 100 days until a wedding day. “100 Day” for grade 1. This, however, is nothing to be celebrated. The time away from the family and in hospital has been much more than we anticipated. I miss normal. I miss my boys. I miss Ray. I miss my friends, my home, my pets, church, being involved in the kids schooling, helping on the farm, visiting and caring for other people. So much has been taken from us. While I can truly say we have maintained staying happy and positive through the last 6 months, today I don’t feel that. I feel numb. I feel worn out. Almost emotionless. I’ve built so many walls to protect myself from the pain of all the losses, and am only focussed on helping Jacob get better, helping him beat this ugly monster, helping him through all the horrible side effects. Today, day 100, I’m allowing myself to process some of the losses and some of the pain, and all I feel is sadness.

The last couple weeks have had many ups and downs. A huge highlight was the Canuck game last Monday night – the kick off game to Hockey Fights Cancer, where Jacob had the amazing opportunity to drop the ceremonial puck, wheelie style. It was overwhelming and incredible. The standing ovation for Jacob was so heart warming and I was bursting inside with pride for how strong and accepting and determined Jacob has been. We had 34 tickets in the Legends Suite, so many of our family and friends were able to share in the experience with us, as well as many friends, nurses, and doctors we know in the crowd. Our family was taken down to the locker room to meet the Canucks after the game. It truly was a remarkable night.

Jacob and I are living at Ronald MacDonald House in-between hospital stays for chemo because his wound is still open in 3 areas, his immune system is not functioning, and we have daily appointments at the hospital. There are many people we’ve come to love at the house. I’ve been called “the most social person there, by far” by many of the staff and residents. While there is joy in this, it also comes with sadness. Dear friends of ours learned this past week that their daughters cancer has relapsed, and is ” treatable, but not cure-able”. There is a heavy weight on my heart, for them, and for the fear of the unknown with Jacob, knowing this cancer is so aggressive and also has a high relapse rate.

We are currently in hospital now, 3 days post chemo. Many of you have read already that Jacob had toxic levels of the chemo in his bloodstream. The chemo was too much for his kidneys, and his kidneys stopped processing it, leading to a large build up in his blood stream and cells all over his body. A rescue med was flown in and given early this morning as an antidote to methotrexate toxicity, which thankfully came quickly because Jacob was in a life threatening situation. This medication rapidly binds to the chemo and expels it from the blood stream. We are working now to get the rest of his body cleared with high doses of another rescue medication, and hyper hydration. Jacobs kidneys have taken a hit, levels of creatinine are too high – indicating they’ve sustained damage- and his blood pressure is way too high. The hope is that the rescue meds were given soon enough so that there will be a reversal of the organ damage. Jacob is supposed to receive this chemo again next Monday, but doctors are working to figure out a plan as his kidneys won’t be able to tolerate the next dose by Monday. For now, we sit and wait for all the chemo to be cleared from Jacobs system, and wait to see if kidney function returns to normal.

Thank you to each one of you who has carried us in some way. For your love ,your texts, your visits, meals for the family at home…and above all, your prayers, because there are many days when the words just are not there….thank you, thank you, thank you. 💜

Romans 8:26-28  “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.  And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

https://g.co/kgs/ETT7Bj

Worn. Tenth Avenue North