Wednesday, September 23, 2015

lightening up.

The weight of it all does not get lighter. As we approach 3 years from dx, sometimes the weight can feel heavier. I think at the road we've been on, chemo that worked, the ones that didn't, the in-patient stays, the ER runs; and you think that there must be the light at the end of the tunnel sometime, right? but I can't see it.

It isn't as if I am a skeptic. I am not. I have great faith that Reese will be healed one day and that this can be our path - but I am also a realist. "low grade" gliomas tend to need... care, for a long time. That may mean on and off chemo for all of childhood. It may mean surgeries or radiation. It may mean times of stability and then back on and off more meds. It is hard to sit, 3 years in, and think that the possibility of this being that much longer is there.

Perspective changes after this long, though. A 99 "fever" that I used to hoard reese home for - I send her to school with. I remember that bad moods are what 5 year olds have and that it isn't the tumor changing her. I hold in my heart that she can be sick like other kids - a sinus infection is just that. Praise the boogers that come so I can settle my thoughts into allergies and not tumor. My scanxiety is different. I know that I can't change the results with my worry and fear, so I am more easily able to tuck those feelings into my pocket and just pray to hear the words of stability.

There's jealousy in the cancer world. No one wants to talk about it, but there is. There are parents jealous of Reese. Wishing they had more options available... or that there were options at all. There are parents jealous of statistics - looking at those children who have an over 90% remission/NED rate and think "I wish that was us". I am jealous of long term stability off first protocol, obviously. I am jealous of people who can cheer at the end of chemo knowing that it is highly likely that this leg of their journey is over. All of this evolves over time, those feelings, that you don't even know existed until you have a little twinge of jealousy when someone says "two years stable!!" or "NED scans!" or even when someone says their diagnosis in their first post on a page. Welcome to our world, I am jealous of you. I read once on a blog of a mother whose child had DIPG that she was jealous of the bald kids at their hospital... because that meant they were doing chemo, which had the hope and promise of possibility - and that's all she wanted. I think about how reese advances in school and goes to dance and plays with her sisters and re-learned to walk, even... I try to keep it in perspective, but we are all human. We fail and remembering to hold that perspective in our minds at every moment. Those jealous feelings are a sneak attack on my heart.

EJ took the girls to school today. I sent her off, another day, to be loved on by literally dozens of people. To wave to her friends in the halls, hug those who need it, learn and expand on her kindergarten knowledge, and laugh with them all. Last night, in the car, all of a sudden reese was laughing in her seat. When I asked her what was up, she just said "oh I'm finking of sumpin funny from school today". Her own little secrets with her little friends. I made my heart soar.

There's so much emotion on the timehop app this time of year. Her bad arm, her fall that didn't get a CT, and october brings ER trips and vomiting. Sometimes I want to yell "oh geez, you were so stupid" at my phone as I read my status updates blaming soft signs on other things, but I didn't know. No one did. I wade through it all until I get to halloween time to where she could barely lift her head and, finally, revel in an answer.

Things get easier and harder at the same time. You become a pro at things, like weekly chemo that seems like no big deal, like answering questions about side effects or what options are likely next for other people based on your own personal research or endocrine issues that you may or may not have. But you can never be a pro about letting yourself not go there. The what if's, the what's next, the whens. You worry about doing more or less than you already are - should I cut out more sugar? should we rub oils on her? should I clean with these supplies? the list goes on as you learn more information. You have to wade through the claims, the facts, the trials, and just... feel at peace in the end with whatever you choose. That is a heavy piece of weight.

I may not stress about fevers. I may not worry about counts. I may not think about the bad things all the time, like I used to. I may have come to realize that this is a part of our lives forever. But that doesn't mean the weight is lighter. I am able to remove some weight, shift other pieces to put different things on, and so forth. I am able to let other people hold some of the weight for a few minutes, to give myself a break,  but in reality, it just sort of means that I learned to carry it in a more productive manner... that I put it in a wrap, so to speak, so I have the rest of me free to continue life. My hands are free to love on my babies, my heart is free to dream.


  1. Oh my gosh, this one got to me! You are so Skelte Strong!

  2. Always praying for you and can totally relate!