Christmas has come and gone. We had a wonderful Christmas; enjoyed Christmas Eve service at our church, celebrated with family and friends, and even had a few quiet moments to just take in the joy of the season. Now, the hustle and bustle of the season has calmed down and it is a new year. We brought in the New Year very quietly. Trev, the twins and I went out for dinner and then returned home to watch the Jets game and then a movie. I didn't even make it till midnight. I guess I was a little too tired. 2013 definitely took a lot out of me and 2014 promises more of the same.
Since I last wrote, Justin has had another round of chemo (#9 completed) and continued radiation therapy as well. Today marks his final treatment of radiation at the tumour site! He has made it through 25 treatments. It took some time to fully affect him, but the radiation has made him very tired and he also has a "sunburn-like" mark on his back where the radiation was focused. He says it doesn't hurt; it's just a little itchy. We have some moisturizing lotion to apply and it seems to help. He has also been suffering headaches for the past 5-6 days. Today, the doctor said he's not sure what could be causing them. He gave him a full check up and Justin shows no neurological symptoms such as blurred vision, nausea or vomiting, or limb weakness so that's encouraging. If they continue till next Tuesday (our next clinic visit) he wants to do an MRI, just to be safe.
After his surgery in November, Justin's chemo regimen was switched up. Instead of receiving four drugs (Vincristine, Doxorubicin, Etoposide and Ifosfamide), he would now receive only three. He would continue to receive the Vincristine and Ifosfamide, but a new drug would be added into the mix (Actinomycin-D). With the change in drugs, Justin's hair started to come back! He was so excited! His head was covered with a fuzzy, white/blonde layer of down. The eyelashes and eyebrows also began to reappear. Unfortunately, while receiving radiation therapy, Justin's chemo had to be changed once again. It turns out that Actinomycin-D is not safe to administer while receiving radiation. Justin was put back on the Etoposide for the last two chemo treatments and, alas, the hair has gone again. Now that radiation is done, at least for now, we will go back on the new drug and it is my guess that the hair will start to come back again.
The past month or so has had it's share of ups and downs. I've rejoiced with friends over scan results that show tumours that are stable and show no new growth; I've grieved with friends who are dealing with a newly diagnosed child; I've been tormented with stories of recurrences of Ewing's Sarcoma in teenagers - some whom I know, others whom I do not. I am reminded nearly daily that this disease is ruthless. It is savage and knows no boundaries. It doesn't care who it devours. And though I have never been diagnosed with this disease, the day we were told that Justin has cancer, it entered into my body and soul. It eats away at me every day. It has crawled inside my head; taunting me. I HATE THIS DISEASE. I hate what it has done to me; to my family. I am no longer the same person I was prior to June 28th, 2013. My family is no longer the same. We live in a constant state of stress; anxiety and fear. Fear of the unknown; uncertain what the future holds. And through it all, I have to remain strong. I may even do a pretty good job of faking it at times. I do have days where I can say, "Yeah, things are okay right now", but even on those days it's not without effort. Sometimes it is exhausting just keeping up the effort.
It's so important, now more than ever, for me to have faith that God has a plan for Justin; for all of us. There has to be some reason why we are being put through this. I am not privy to His plans. I don't have the answers. This is a journey of faith and fear. I flip back and forth between the two often. I do know that God loves us all and that he didn't cause Justin to have cancer. I also know that he can perform miracles. And in that, I can find some peace.
