Looking forward to the end

Baby boy

Next week could be my baby boy’s last round of chemo. We don’t know yet though. The tough part is, we probably won’t know for months.

Here is how it will go… Next week, we will have two days of chemo. In and out, home each night, and then we wait. On the 19th of December we will go to San Francisco for a EUA (exam under anesthesia) with the super specialist whose title I can’t pronounce. He will spend 3 minutes after the exam/laser eye surgery to tell us three things- The current size of the tumor, how the other eye looks, and when he wants to see us again.

He’s not a chatty one. But supposedly the best on this side of the country.

And then, if the tumor is gone, we wait. We wait through January, to see if it grows back. Then if we are really in the clear, February we will get a remission plan and his broviack/central line will be taken out.

If the tumor isn’t gone, or grows back, then in January or February, we will get a new treatment plan.

I am ready to be done. I am ready for my son not to be fighting for his life. I want to bath him without wrapping him in plastic wrap and being scared of infections. I want to go weeks without going to a doctors office or hospital. I don’t want to be scared anymore when I see him pale, or something is slightly off his normal routine.

But I am trying to resist the urge to focus on done. To focus on the end.

We are not there yet. We don’t know for sure if we will be, or how long it will last. With this type of cancer, genetic and all, there is a good chance there will be more tumors.

Part of me will always worry. Part of me will always be ready for the next round of chemo, and the little bit harder life it brings to my family.

So, because off all this, I am trying desperately to find peace in where I am at. Cancer or not. Good day or bad. I need to find peace in my present, and stop worrying about the past or fretting about the future.

I’ve written about this before. I even made a little graphic…

How to find a smile: Don't worry about the future, or fret about the past, but focus on the fact that God loves you right here right now.

But I really struggle with it.

When it comes to cancer or cancer free, my issue is less about knowing God loves me but more just what will our life be like a couple of months from now? I know we will be okay. I know we have amazing friends and family who have gotten us through to this point and will continue as long as we need. I know  that God is working through the random generosity of strangers and organizations. I know that my son has great doctors and nurses, who will fight with him every single day as long as he needs.

But it’s tiring to thing, we may be doing this a year from now. It’s sad to think that my son, who I have seen slowly get more pale and uncomfortable with his health, will have to keep going, or will have to do it all again.

So I don’t give myself an end date, and I am not sure if I even should. My husband and I have always taken the stance of celebrating the small stuff. In our marriage, in parenting, and just in life. Why wait for big anniversary to celebrate being awesome? Why wait for a birthday to give a gift? We have taken that philosophy to cancer-fight as well. We celebrated when we made it through the first round of chemo, every time we get home from the hospital, and even just when we get through a tough week.

Maybe I don’t need an end date to focus on. Maybe I just need to focus on the small stuff along the way. It’s gotten me through to this point. It’s made us survive when the “end date” was six months away. It will get me through a couple more weeks…months.

Like today when I get to only take one kid with me to drop of labs, instead of two. I don’t even have to pull out the HUMONGOUS double stroller in and out of the trunk while angry drivers watch. That’s something to celebrate.

Don’t get me wrong I will celebrate when they announce he is cancer free. I’ll probably sob tears of happiness for days. But as much as I have been tempted the last couple of days, I’m going to try and not put hopes on that. That will be a blessed day when it comes…if it comes.

Today I am going to try and focus on the good of today… I’m not so good at it. All I can do is remind myself in long rambling posts that I need it, and try again.

Maybe I’ll make cookies.


3 thoughts on “Looking forward to the end

  1. Much love my friend, with time you will learn the one day and battle at a time. It took me my “violent” encounters with God to surrender to only dealing with one day at a time, and he reminds me when I start stepping out of line on this. In one of your previous post you said you felt like a huge weight had been lifted, I’ve felt that to recently, I think something peaceful is coming your way. I feel more at peace when thinking of Asher than I have in months. I know I have only seen him a few times, but I just feel it. Love you all bunches.

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