Aiming for the Positive

Thursday we checked into the hospital for Trip’s 5th round of methotrexate. I’m not sure if he was feeding off my emotional week, but it was the hardest day for him emotionally speaking. Getting his port accessed was a nightmare, most likely related to the last access when the nurse poked him three times until she got it right. He screamed, fought and cried like he did in the beginning of all this mess. I was kicked and hit a few times, which are normally punishable offenses, but I felt like he was being punished enough. It was almost like a year of play therapy was out the window. There were three of us holding him down and he was fighting hard and asking why we are doing this to him and begging for us not to hurt him. The accessing process should take only a few minutes, but when there’s a fighter it takes a little longer but always feels like hours. After that the day went downhill. He did not want to be in the hospital and was begging to go home. I decided to explain a little further about his disease and told him that we need it to leave his body. “The medicine we get here will help us get the disease out of your body. We need to come to the hospital until the disease is gone, “ I tried to explain. While sobbing Trip screams, “Then we’re NEVER going to get out of here!!” I told him that I understand how he feels and that we WILL get this disease out of his body. “Sometimes, it helps to cry – just let it all out. It helps me feel better,” I told him in hopes of persuading him to not hold in what he was feeling. After that there were no words for a long time. I held him like a baby and rocked him for a long time while he cried and I choked back the tears. I watched him and remembered rocking him when he was a baby – a time before we even knew about the existence of this awful disease. How did we get here? Whose life is this?

He slept for a long time after crying. When he woke up he told me he was sorry and when the nurse came in he told her he was sorry too. He has such soft heart when he isn’t trying to protect himself. The night was a little better. He does not like it when the family isn’t “all together”. He was anxious to see his dad. Colson came Friday morning and I left to work and have a much-needed break. I was able to have my breakdown during the 30+ minute drive home.

I went back to the hospital Saturday morning and think the timing of being in the car was uncanny. There was a radio program on about staying positive when you feel anything but positive. I needed to hear it. It reminded me of the importance of finding things to be positive about when it is easier to focus on all that is wrong. I struggle with how to stay positive about the outcome of this battle but not get my hopes up at the same time (usually feelings that surround scans since that’s when the good/bad news comes). I haven’t been able to reconcile the two.

It’s easy for me to tell other people to stay positive when they are facing challenges because I truly believe everything will be okay for them. Why can’t I wholeheartedly believe that for my family? I think back to the beginning of all this when I was determined that Trip would have the initial chemo protocol and it would be the magic solution. A year ago, I thought things would be “normal” by this time. Here we are with a disease that has progressed since the beginning and now have what they consider to be “resistant” disease. It must be some sort of self-protection so I won’t be completely shocked if we do continue to get less than desirable news. It occurred to me that I do have a lot to be positive about regarding Trip and his disease.

I am the mother of an energetic, fun-loving little boy who has fight in him.

I am getting the best treatment for my son.

I am blessed beyond words to have the support of family and friends.

I am determined to remember the good surrounding us instead of what could go wrong. It will take work, but hopefully it will get easier in time. I know there will be hard days and I may or may not be ready for them, so I have the above list to refer to. ☺

There are so many people we know that are facing disease and fighting for their lives or the lives of their children. I guess it’s a sign of getting older?? My heart goes out to the parents who lost their little girl to cancer today; the 3 year old little boy relearning basic skills after a recent bmt; the teenager living out her high-school years fighting cancer and undergoing surgery after surgery; the mom and wife fighting for her life and scared for her family; the dad and husband gearing up for his fast-approaching bmt with so many unknowns; the granddad losing his battle with leukemia… too many to list.

If you’ve made it this far reading my ramblings today I commend you. ☺ I am simply trying to process these chaotic feelings. Hug your kids and spouse tightly and be thankful for the daily trials. Tell your parents and siblings how much you love and appreciate them. Make sure your friends and family know how much they mean to you. Don’t cloud the good in life with the daily minutia. (Not trying to be preachy to anyone but myself here.)

Thank you to all for standing by us on this journey. Even in cyberspace we know you are there and couldn’t be more thankful.