2018 will be a year our family never forgets. The year where life had a “before cancer” and an “after cancer”. The year where our lives changed drastically, taking us to many places and situations we couldn’t imagine ever being in. Most people start the new year with resolutions – a fresh beginning, the start of something new with less bad habits, better health, new goals, renewed purposes and aspirations. 2018 rolls right into 2019 for us in continuing the fight against osteosarcoma with Jacob. There are no resolutions. This does not feel like a fresh start or new beginning. 2018 brought a diagnosis of aggressive bone cancer to our precious son. It then brought a multitude of tests, surgeries and round after round of intensive chemo. It brought the amputation of half of Jacobs leg. It brought health scares from chemo, tears, fears, and plenty of pain. The year included blood transfusions, platelet transfusions, toxicity, allergic reactions, low blood pressure, high blood pressure, neutropenia, fevers, nausea, weight loss, mouth and throat sores, exhaustion, feeding tubes, sleepless nights, hundreds of injections, hundreds of blood draws, and an enormous amount of time apart from our family. In total in 2018, 215 days passed since we learned Jacob had cancer. 131 of those days were spent away from home for Jacob and myself, in hospital or at Ronald Macdonald House. 2018 also brought the loss of 4 beautiful girls that we knew, a 2 year old, a 6 year old, a 12 year old, and a 19 year old, as well as the loss of a 6 year old boy – each one special to us, and loved by us. 2018 ended off with very heavy hearts, grieving for our friends and their immense losses, and grieving for our own situation and the intense fear of loss ourselves.
Christmas was spent at RMH with our whole family. On December 28th, we were finally, finally given the go ahead to go home after 90 days! Jacob and I left the home October 3, the day before his amputation. We packed a few things, thinking we might be gone for a couple weeks. I’m so thankful that I did not know on that day that it would be 3 months before Jacob and I could return home again. Coming home felt incredible. Jacob and I were both nervous and afraid to be away from our safety net of being near the hospital and being around people who understand, but the moment we pulled into the driveway a weight was lifted off our shoulders and it just felt good. We spent 5 days at home, enjoying family and friends visiting, lots of time in the hot tub and playing and reading and snuggling with the kids, a few church services, and celebrated New Years Eve. For just a few days things felt ok, almost “normal”. For just a little bit, we could take a break from the hospital routine, and co-living at RMH. For just a while , I could pick up and be a mom to my little kiddos.
On Tuesday night, when I told Noah that Mom was leaving again for the hospital, and not sure when I would be home, he lost it and cried inconsolably for a long time. Once he settled down he started asking questions. Big questions. Ones that no mom should be answering to a little 6 year old. He told me the story of Terry Fox, and how they cut off his leg but he still died anyway. He pegged me with questions over and over, including “why did you leave me?” “why weren’t you with Jacob while they cut off his leg?” “what did they use to cut off Jacobs leg?” “how much did he bleed?” “what if the cancer comes back?” “what if it the doctors didn’t get all his cancer?” “what if he dies………?”. The most heart breaking part for me was not being able to tell Noah that Jacob would for sure be okay, that Jacob would for sure “beat” cancer. I wanted desperately to tell Noah with 100% certainty that Jacob will be just fine, that we just need to push through the rest of chemo, push through rehabilitation…and then life can be normal again for us. But the truth and reality is, I cannot. We don’t have that assurance. What we do have is assurance that God knows, He cares, and he has a perfect plan. I told Noah to keep being brave and strong, to not worry about tomorrow, and to keep trusting God for whatever tomorrow holds. Because that’s what mommy is doing. It breaks my heart to have to tell him these things – conversations that are too much and too big for his little brain.
For now, we are still back home, waiting for Jacobs counts to come up. He currently has no immune system at all, so this weekend we will be keeping him home with no company over. Sunday night Jacob and I will head back to RMH for an early morning test Monday to see if his body is ready for chemotherapy. We have 8 rounds to go yet.
Jacobs wounds are looking absolutely fantastic and are almost closed!! We were told they would not heal during chemo, but Super Jacob is proving the doctors wrong. The femur and the tibia, however, have shown no signs of healing or fusing together. Jacob is eating better on his own, and chose himself to pull out his feeding tube on Christmas Day. While there has been so much heaviness and sadness around us lately, we are very pleased with the progress. Jacob maintains an almost impossible to understand acceptance of everything and a very positive attitude. If I were to make a New Years resolution, it would be to resolve to keep the positive attitude – to keep loving others around us even while being pummelled from every end with things we cannot control, to keep accepting what God has planned for 2019, as we did in 2018.
“But blessed is the one who trusts in the Lord,
whose confidence is in him.
They will be like a tree planted by the water
that sends out its roots by the stream.
It does not fear when heat comes;
its leaves are always green.
It has no worries in a year of drought
and never fails to bear fruit.”