I last posted a week ago.
To say that the days following that post were difficult is grossly undermining just how stressful that time was. Each subsequent day Mathew grew more upset and panicky about chemo. It started when he woke up in the morning and continued long after he was home from that day’s chemo. In spite of closing the door and blinds to the little room he was in, his cries and despair were heard throughout the chemo room. The nurses were concerned about Mathew’s threats to discontinue chemo and I shrugged…. there is only so much a person can do and as they pointed out, they can’t force a 5’11” young man to do something he doesn’t want to do.
With the help of Ativan and John, we managed to get Mathew through the end of his treatment last Friday. We then requested an appointment to see his Oncologist because Mathew wanted to stop treatment. That meeting happened yesterday and we were on edge because all of us know what it means if Mathew stops treatment and the cancer is still there.
What a relief to hear that the protocol was only for 4 cycles so Mathew was DONE!! Mathew was so happy to hear that news! Now he just has to recover and this upcoming weekend is when his platelets bottom out as well as his white cell counts. He is already receiving the neupogen injections to stimulate growth of new white cells and a transfusion or two will bring the platelet count up a little. Nature and time will do the rest.
The plan now is for Mathew to get a CT scan in about 3-4 weeks with a follow up appointment with his Oncologist. What happens next will depend on those CT results. For the first time Mathew discussed with both his Oncologist and his Family Doctor, how treatment is affecting him and why he might possibly refuse further treatment. If the issue comes down to quality versus quantity, and that quantity includes nonstop chemo, then Mathew is thinking he would prefer quality. The Oncologist suggested that she and us weigh whatever options face him if it comes to that and see if some chemo would extend both quality and quantity of life at the same time. His doctors were very impressed at the thought Mathew has put into all of this ~ he has been fighting this damned evil for the last 2-1/2 years with them.
Usually Mathew doesn’t participate in conversations during his cancer-related appointments ~ he assigns that task to me. For the past couple of months he has opened up more and directly addressed the issues bothering him. We are all so proud of this step he has taken – it is HUGE. His care team finally gets to meet the depth of character we all know and love. It is an honour if Mathew chooses to invite you into his corner of the world and share his thoughts…there are many who never see that side of him, much to their detriment.
I honestly don’t know what the CT scan results will be. As always I hope for good news. There were a couple of suspected nodules that showed during his initial treatment that came and went….if those were cancer then this Ewing’s Sarcoma is such an aggressive and stubborn devil to get rid of.
For now though Mathew is enjoying this respite from treatment and is waking up happy. He will have a day or two of sleeping coming up, when he feels at his worst and then he will perk back up.
I want to take some time here to thank those who greatly assisted us during this last treatment. John’s sister, Wendy and his Mum cooked us dinners during the days Mathew was receiving chemo. It was lovely having a warm, home-cooked meal that often gave us leftovers for lunch the next day. There were other days Wendy also kept us supplied in food. Our sister-in-law, Denise made some meals for us and delivered them from an hour’s drive away. Our longtime friend, Sharon made us food and cookies. Those cookies never lasted long though! Mathew’s extended family here and away gave him treats and little gifts to cheer him up. His Aunt Linda made a special trip to come down and have a Halloween night with Mathew. His aunts and uncles stopped by to visit as did his cousins. When Kristen was here, the cousins banded together and played some games that thrilled Mathew (he loves games). Some neighbours down the street gave Mathew special Halloween bags because they knew he was in treatment. His Nana and Poppa stopped by often and always with treats. My work surprised me with a box of gifts to cheer me up and boy, did it ever! We have all benefited from the gifts and Mathew had a great time checking them all out.
Each and every person’s visit or gift was so appreciated. If Mathew wasn’t up to visiting there were no hard feelings; the visitor just came back another time. It brightened Mathew’s day and cheered him up during all the hard times, to know his family and our friends took care of us and him.
Thank you to everyone for everything and I am truly sorry if I missed anyone. I am deeply touched by the thoughts and actions of so many and am grateful we are here so that Mathew gets all the love he so deserves.