Having a cancer kid is our new normal, and most days it’s not something I dwell on. We’ve been incredibly fortunate that Serenity’s side effects have been manageable, and at times it’s easy to look at her and think she is not so different from a healthy kid.
Then there are other times when it all feels very surreal. Those are the times when I think about picking my baby up, leaving the hospital, and proclaiming to the world, Enough! We are not doing this ANY MORE. It feels like if I try hard enough, I can ignore the whole thing and pretend we are back where we were before she got sick.
I went alone with Serenity to her appointment today. I was a little nervous, because it’s become very routine and there are certain things that Phil does each time. They’re his job, and I don’t do them the same way, and I was afraid I would forget something and she would become upset. But it went ok.
Parking was horrendous. I have never had to park far away and today I had to park on level 3 because the parking lot was so full. Serenity wore her mask into the building and was a good sport about the fact that I can’t put it on her face quite like Daddy does. The oncology clinic was crowded and we had to wait longer than normal. She allowed the nurse to weigh and measure her without complaint, which has only happened one other time. We sat at the craft table and did stickers.
When we were assigned to our room she didn’t want to sit in the rocker, like she normally does. We sat side by side on the bed and a woman from Child Life came in to say hi and bring Serenity some toys. It wasn’t the Child Life person that she always sees, so she was a little bit wary. She held perfectly still while they accessed her port, another thing that she has only done once before. She winced a little, which made me wonder if it hadn’t numbed enough.
Her numbers were good so she didn’t need a transfusion. I pointed out her peeling hand and foot to the nurse who said that it was probably a side effect of the methotrexate. She allowed the nurse practitioner to examine her but when he tried to look at her mouth she burst into tears and sounded very frightened. I think she had been nervous all along, and suddenly it became too much.
She didn’t want to sit on my lap when it was time for the chemotherapy infusion, so I had to do some convincing. She decided she wanted to watch her little DVD player and the big TV in the room simultaneously, which made it impossible to hear anything. Every couple of minutes she would yell, “Push pause!” and I would pause her movie. She’d immediately push the play button, wait a minute or two, and then yell for me to pause it again.
On the way home I thought about the fact that everywhere I look, there is something to remind me of the overwhelming support Serenity has received. She watched her movie on a DVD player that was a gift. On the drive up she played with toys that she has received over the past 2 months. Her dress and shoes were purchased with money that had been donated. The stuffed animal she brought and the blanket that she used were gifts. It is easy to feel frustrated and overwhelmed because the novelty of her diagnosis has worn off and sometimes it feels like the world has forgotten her. Today I was reminded that she is loved by many.
Last week all of the kids got a present in the mail from someone who doesn’t know us, but heard about our story. It was a good day and all of my kids were happy.
Serenity has complained about her tummy hurting since our visit, and I’ve given her some zofran. She hasn’t thrown up but she also hasn’t eaten. Thank heavens for nursing. She’s had some diarrhea so I am trying to keep her well hydrated. She has been cranky and short tempered which is so unlike her. I hope that it is just because of a long day, and not because of the chemo.
I’m glad that the visit went as well as it did. That had to be tough doing it all by yourself. You’re all constantly in my prayers. The world may be moving on, but God knows your every care. It is surreal to have something be so real and present to you and be conscious of the fact that others aren’t experiencing that same reality.
Oh Adria, please don’t ever think the world has forgotten Serenity! Just remember that everyone fights battles every day, some more serious than others. The world hasn’t forgotten, the world is probably trying to figure their own lives out 🙂
Thinking of and praying for you all daily! HUGS!