Justin started a new chemotherapy drug last March and has been on it ever since. This chemo has been preventing the tumor from growing, but does not shrink it. He has his chemo twice a month and goes to a facility in West Jordan. He usually goes in first thing in the morning and is there for five hours. We are grateful he doesn’t have to spend the night at the hospital. We are happy this chemo doesn’t make him sick. He does get really tired and his joints ache a lot. Justin will say, “I’m a 28 year old man stuck in a 70 year old mans body.” It hurts walking up the stairs and especially when he first wakes up in the morning.
Justin decided to take a break from chemo during the winter. He was off chemo for two months and it was the best two months we have had in a long time. Justin was getting up early and going to the gym every morning. He was walking, swimming, and lifting weights. He was so happy to finally feel a little normal again. He obviously still has a really hard time breathing since the tumor takes up lung space, but it was still a great time. His hair started to come back and he was eating healthy and enjoying life.
After those two months Justin went in for a scan to see if the tumor had grown or not. If the tumor hadn’t grown we were hoping to take more of a break. Sadly the tumor had grown and enough that they saw a significant increase in size. This was really hard news for Justin and I to hear. I guess we both knew he would have to go back on, but the time off was so nice. He started chemo right away and after a couple rounds it started to work again and stop the growth. The most important part about this break was knowing this chemo really works.
Justins cancer is so rare and there isn’t much out there about it. Right now the only thing we know is this chemo is keeping him alive. Sadly this means he will basically have to have chemo forever. There are some options for other chemo drugs that he can try that won’t be so hard on his body. It’s always risky when you try a new chemo drug. If it doesn’t work that is time you have given the tumor to grow more, but you never know unless you try. We are hoping to find one that is easier on his body. Sadly there isn’t a chemo that we have found yet that shrinks his tumor, just keeps it from growing. As of right now he is going to keep doing chemo and we are going to move on with life. We will keep looking for new treatments and keep an eye open for new things, but right now this is what we are doing.
We feel so blessed that he can still function and have a semi normal life. Justin works full time and really loves his job. On the days he has chemo he will get up early go to chemo and then go to work afterwards. He truly is amazing! We hope to move on with life and not let cancer hold us back. We feel blessed with how things have gone so far. Continue to pray that we can find a drug that will shrink his tumor. We are so grateful for all the prayers that are said for us each day. We would not have made it this far without them!