notes

Woke up 45 minutes late today and almost didn’t catch up for the rest of our day. We made to good time to the hospital and it was a good day to be running behind because the machine was down so we ended up waiting for them to be ready for her still.

Today was the first day for her new set up. There were still hiccups though, she had difficulty breathing again. They were able to give her a little assistance so she could get treatment which means we are still on for our last day to be Dec. 20th. But I can’t help it, I worry. When I got back into recovery  she had a mask on and suction. Normally she is just sleeping.  I am wondering if they are going to say completing radiation isn’t worth the breathing difficulty anymore.

She also woke up in a terrible mood. We went back to our apartment for some down time and for a little re-set on her mood. Then we had a continuation of my late wake up…fail after fail. And her head started to hurt. I hate these headaches she is getting. They come on suddenly and really hurt her. Right now its fairly easy to stop what we are doing and be still and quiet. Navigating through these will be much harder for us when we are back home full time with the boys.

You can see in these pictures how almost all her fingers are now covered in band aids. When she started kindergarten she got into the bad habit of biting her nails. Once we started in the hospital it became a compulsion. She bites them down til there is literally almost nothing there. Its her way of coping….we all don’t like that she does it, including Jennifer, she can’t seem to stop. It hurts and they bleed and the little bits of nail she has left get so sharp she cuts herself. Daddy put band aids on all the really bad ones for her last night…she has her a thumb and a finger not covered…

Also these headaches are just a precursor for whats to come. I feel so woefully unprepared. She had eye pain and some discomfort in her arm. Normally I would just blow it off and not be too worried, but if for some reason I was I would call my sister (the nurse and mother of 5). This is uncharted territory and I have no idea what matters and what doesn’t. Its unnerving.

Its like having a newborn in a country that I don’t speak the same language…I am confused…and alone…and have nobody to call.

We figured it out and handled what we could…then a couple more fail curveballs came our way. One of the fails from today did end us up with a visit from my boys and my parents. I hope it helps them through the week seeing us today. It seemed to help JLK.

I found myself so many times today wanting to vent…what else could go wrong..this is the worst day..I stop myself before the words come out because I know (and because I am scared to jinx us)…It could be so much worse, so much more could go wrong. I am waiting, always on the edge of my seat I realized. I am never at ease I always feel like I am on high alert.

But who knows if I woke up on time maybe we would have gotten in a accident.

Or I think this is killing me. And I choke on the words. I am very much alive..maybe even regretfully so.

A day full of fumbles yet this evening I was given grace..from two little girls with tumors in their heads. The 7yr old girl that goes in for treatment right after Jennifer gave my sister in law a note and a bracelet for Jennifer while I was in with her. In it she said she isn’t scared of treatment and that she would like to play with Jennifer some time.

We have talked about this girl and her family a few times before so Jennifer was excited by this gesture of friendship. Over dinner we talked more about her and getting together, what might be fun to do for the both of them. We talked about “E” the other girls brain tumor and how she might be feeling. We talked about how she is from further away then us and how she doesn’t have hair right now from chemotherapy.

When we got home tonight Jennifer made her new friend a card. She dictated the longest note back to E for me to write. And then I read it to her to make sure it was exactly what she wanted to say. I think it made her feel connected and not alone to be in contact with a beautiful little girl on the same cancer path. Though I don’t know E I am proud of both of these girls…for their fortitude, honesty and kindness.

I tucked Jennifer in and rubbed her legs and feet and head for a long time. I was ready to come out and get on my computer. But she asked me to stay with her…and we whispered to each other and I felt her warmth under my hands.

I wanted to lose my cool so many times today. I am so glad I didn’t. I want to remember this feeling…since I all to well know the opposite feeling when my frustrations got the best of me and I look back on a “bad” day with regret.

Though it was a day full of mistakes and mishaps….and many frustrations popped up…I can say I will look back on today and smile.