12.22.15

Leah received her second dose of Avastin today. When Leah has chemotherapy, even a low dose, it’s still an eerie, surreal feeling. Autopilot is my daily mindset that keeps my thoughts on the day’s to do list and wards off worry. But autopilot switches off as soon as we enter the treatment room. I’m only in the moment, and I let myself feel. I feel her worry that the poke will hurt or that it will take a few tries to find a good vein. I feel her sadness when we still have an hour left, and she wants to go home. And I feel her anger when she doesn’t want to feel sick. I always hope that she knows my heart is right there with her, trying to carry some of her burden. And when she slips back to being a typical eleven-year-old, busy coloring or playing on her iPad, I let myself wonder- just for that moment- how on earth we ended up here.

I know I’ve said it before, but Leah is a soldier. This morning during proton, I noticed when they snapped down the mask, that her legs tightened. I knew it hurt. But instead of getting upset, she wriggled just enough to make the mask comfortable.

This afternoon, she was so composed during her Avastin treatment. During the poke, I can always see her level of stress in the tiny wrinkles between her eyebrows. Today, I watched the wrinkles fade as she closed her eyes and focused on her breathing. I was so proud of her.

Then on top of today’s treatments, Leah was told that she has to increase fluids to prevent the need for IV hydration. The very last thing she wanted to do at the end of the day was drink 40 ounces of water… but she did it. No complaints. I’m a lucky mom.

This will be her first week off the steroid since starting Avastin. Please pray that the temporary Avastin and proton radiation prevent further need for steroids. We have not seen an improvement in the headaches behind her eye. Hoping that we will see some improvement this week- it will be her third week on the new medication. Leah also got some new kicks this week to level out her leg length. She is more comfortable walking, and she is working on breaking old habits related to limping.

Only three more proton radiation treatments, and we can go home! We can’t wait!!!

Thank you again for your continuous love and support. We are blessed. ❤️

Merry Christmas!🎄

 

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