Vitamin D

This past week we vacationed with friends in Florida, a much-needed dose of Vitamin D. It was the first time we traveled someplace warm and swimsuit worthy for spring break. Leaving thirty degree weather behind, you really notice the impact of sunshine on your days. 

Leah felt pretty good during the week. We were a little nervous about traveling during her treatment, but we managed. She started feeling poorly on our way home Saturday, and she missed school today. We’ve noticed a pattern of her not feeling well around days 10-12 following the treatment.

In August, Leah started a long-term steroid to reduce swelling in the brain and to prevent the tumor from causing vomiting. We weaned her from the steroid a month ago with the hope that her chemotherapy drug, Avastin, would take over the job of the steroid. Unfortunately, the Avastin isn’t getting the job done. We really don’t want to start the steroid again, so we are in search of other options.

Tomorrow, Leah has a physical therapy evaluation to begin working on her limp. It’s been around since her brain surgery in 2012, but seems to be more prominent lately. We’ll also have labs to make sure we are set for chemo #6 this Thursday.


High Fives

I know the fist bump is the new thing, but I still like the high five. That’s how we ended each day of school, with a high five once we got in the car. Leah was able to attend school every day this week, and even stayed after two days to participate in Girls on the Run. We both needed a good, long week of normal school and work.

The week started off a little bumpy on Sunday evening, when we noticed bruising on the knuckles of each of her fingers and toes. Initially, I thought her platelets might be low, so we had her blood checked on Tuesday. Thankfully, her numbers were great, and her platelet count actually went up. The doctor believes the bruising could be an undocumented side effect of the chemotherapy drugs. The good news is that her fingers and toes feel fine, so the plan is simply to keep an eye on things.

Last night the abdominal cramps set in, and they are still hanging around this morning. Planning on a restful day. On Tuesday we’ll have labs drawn, and if everything looks good, chemo #5 on Thursday.

The Merrimans Go Missing

Today was chemo #4, and Leah declared that she’s keeping count…

Just before we leave the house, we apply Emla, a numbing cream, to the crooks of Leah’s arms. Then we cover the Elma with little square pieces of Glad Press ‘n Seal. It sticks to the skin and seals around the Emla to keep it in place. It’s better than a patch with adhesive, because it doesn’t hurt to pull it off. But, it doesn’t always stay put… We have to be really careful putting on her coat. Then, we laugh while she tries to open the car door and put on her seatbelt with straight arms. The best part is that she’s so focused on keeping the Press ‘n Seal in place that she forgets to worry about the fact that we’re headed to chemo! Every time we use the Press n’ Seal, I wonder if Glad knows that oncology patients love the stuff. Wouldn’t it be cool if it came pre-cut in different colors and sizes? I’m destined for Shark Tank.


Today, Leah rolled in like Santa, thanks to our awesome friends. Last Saturday, they packaged gift bags for the pediatric oncology patients, each with a personal, heartfelt note of encouragement. Leah handed out a few of the bags, then one of the nurses took the bags to the inpatients. By the time we left, most of the bags had been distributed. Thanks to our friends for spreading the sunshine! Wish you could have been there to see the smiling faces!

Access was smooth- only one poke. Leah’s been sitting in the comfy chair instead of on the bed, and, as funny as it sounds, I think it keeps her spirits up. Today, she brought a new soft blanket and a pair of slippers that friends gave her as a gift last night. She told me they were the slippers she wanted for Christmas that she never got! Who knew?

It was a busy day. We had a visit from Spatz, a golden retriever. Then the art therapist brought in alcohol paint, and Leah spent an hour making some very cool abstract art. She also played some art apps on the iPad, which I’m sure we will soon be purchasing. We also had a quick visit with a friend who was around the corner in the infusion center. Quick, because there was a call over the loud speaker for the Merriman Family to return to the fifth floor. They thought Leah and I made a run for it with her IV pole and chemo in tote! Was a good laugh. Just before we left, Leah’s nurse removed the IV, and she was so incredibly patient. She sat near Leah, and allowed her to peel off the sticky tape herself, and helped her along by wiping her skin with an adhesive remover so it wouldn’t hurt. Those little things are a very big deal to Leah. So it was a good end to a good day 🙂