11.23.15

Today was quite a day… Leah had radiation at 7:30 AM, and her goofy mom overestimated traffic. We arrived half an hour early, and the appointments were already running late. Treatment was uneventful, just the way we like it. Then, we dashed over to squeeze in twenty minutes of physical therapy. Her pysical therapist is the greatest, and we enjoy Leah’s appointments. She’s a little bit sore after, but it’s good that she is working those weak muscles. Next was the neuropsychology assessment, or as Leah describes it, “the test to see if I’m crazy.” It lasted four long hours, but Leah was in good spirits after. She’s been cracking me up all afternoon, telling me about all the “weird” things she did in there.

So when we first headed to the neuropsychology assessment, we were directed to request a shuttle to this particular building because it was too far to walk. That part went fine. After the appointment, we got a little wild and ventured out for lunch.

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We decided to take a taxi back to the apartment, rather than take the shuttle back to the hospital to catch the bus home. Apparently, I lack taxi-hailing skills… So after ten minutes in the freezing cold, I went back into the building and asked the nice man sitting at the main desk (and absorbed in a magazine) if he could call me a cab. His advice was, “Just to go out to the main road.” We did, again. No luck. Then, with my tail between my legs, we hopped back in the elevator, returned to 7th floor, and asked the receptionist to request the shuttle to return to pick us up. I sensed things weren’t going our way when the receptionist had to call the shuttle service three separate times because they weren’t answering the phone. But, have faith, right? The shuttle was on the way! Twenty minutes later at the shuttle stop, our legs felt like popsicles and still no shuttle. Here’s the good part… I decided to give the taxi thing one more try. Third time’s a charm. We walked out to the main road, and I thought we might have more luck if we walked down a block or two. So we did. And low and behold, there before us stood the very hospital we were trying to get to! I had no idea we were just around the corner from where we needed to be. Thought maybe I should head back for a “crazy test” of my own. ha ha. I convinced Leah the fresh (freezing) air was good for us anyway….

We eventually made it back to the apartment safe and sound. A little while later, I bribed Leah to walk down to the convenient store so I could buy a bottle of wine. Three dollars and change for some munchins and small hot chocolate was a small price to pay. Now, we are working on dinner and dividing fractions 🙂

Day to day, things are going fine. Leah is a little tired, but still practices her dance moves each night- she can’t wait to get back to dance class. Sometimes, the sadness creeps up on us. Just a heavy, genuine sadness that Leah has to carry this burden. We answer with trying to keep our minds and hearts open to our greater purpose.

I once heard this quote, and I think about it a lot. “If we all threw our problems in a pile and saw everyone else’s we’d grab ours back.” Regina Brett (New York Times bestselling author)

Honestly, sometimes I’m not positive I would wrestle the mom next to me to get my problems back… But, then again, if I didn’t, my life wouldn’t be exactly what it is now. And life is full of so many perfect, wonderful things, that I would never want to change. Every day, even on the hard days, I am truly thankful for all the good thing in our lives. The best thing being, that every day, I can talk to my family and tell them that I love them. Nothing beats it.

 

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11.21.15

Last night, Leah’s neuro-oncologist called. After reviewing her recent MRI with the neurologist, they believe the severe headaches behind her right eye may be the result of congestion that was visible in the images. They will treat her for a sinus infection using antibiotics, and we’ll see if the headaches subside. She hasn’t had any cold symptoms at all, so I was surprised by the idea- but it’s worth a shot.

Today was our first day without appointments. We were both very happy to dodge the shuttle for a day. We slept in and made pancakes to freeze for breakfast this week. Later, we worked on her religion lesson and reading. Around 2:00 we ventured to Faneuil Hall for the annual Christmas tree lighting. If we walk down a few blocks, we can hop on the water shuttle for $3.50 per person, and it takes us toward the North End. There is an enclosed area, so even in inclement weather it’s a comfortable ride. Near Faneuil Hall, there was live entertainment for the tree lighting, horses and carriages, tons of shopping, and a few street performers. We walked around for a while and checked out Quincy Market- a long, narrow market place with tons of food vendors. After dinner at the Hard Rock, we thought about heading back to Quincy Market, but the area was getting very crowded (and a little crazy). There were tons of police officers- the most we’ve ever seen in one place! Since Leah is not a fan of taxis, we decided to catch the water shuttle back to our neighborhood. The last ride departed at 6:00, so it was dark when we arrived at the dock. We were sitting, waiting for the boat, when Leah thought she saw a squirrel… with a long skinny tail. It was a giant rat!!! All of sudden, we could see them scurrying everywhere -from the dock, to the trash cans, to the sewers. Yuck!

We made it back to our apartment safe and sound, and we are looking forward to a little Hallmark Channel and finishing our game of 500 Rummy before bed. We have treatment tomorrow since the clinic is closed for Thanksgiving.

Our nightime ride in the Boston Harbor…

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11.17.15

Treatment number two checked off the list. Today’s color of choice was pink. Music- Taylor Swift. A gift, I’d bet, she’d love to know about.

We met with the proton doctors today, and they confirmed growth of the tumor at the base of the brainstem and top of the spine over the past year. These tumors are very slow growing, so new images need to be compared to old to detect any change. The good news is that proton therapy is targeting the entire mass.

We also had a physical therapy evaluation today. The physical therapist will work with Leah one or two times a week to build and maintain her strength during treatment. She explained that Leah’s weak side (her left) has actually been strengthened by the leg length discrepancy. Maybe this leg length discrepancy is a blessing in disguise… Later this week we will meet with the occupational therapist to determine if therapy is needed.

Tomorrow, we meet with the pediatric neuro-oncologist to discuss the recent MRIs and the possibility of replacing the steroids with a drug called Avastin. A low dose of Avastin may relieve the swelling that causes the vomitting and, likely, the headaches behind her right eye.

Leah felt very nauseous after treatment today. We attempted a trip to the store, but ended up resting instead. We increased one of Leah’s anti-nausea medicines and added a new medicine to the regimen. Hopefully, that will do the trick. 

We started school work today, too. Working to keep all of our good habits in place while we are away from home… We also found out that we have access to a pool that is very close to our apartment, so I definitely see swimming in our future. 😊

11.16.15

We are settled in, and Leah had her first treatment today. Our place is great, comfortable and safe.

We picked up a shuttle to the hospital just around the corner from our apartment. A nice, short walk, even in rain or snow. On the shuttle ride, she kissed my cheek and whispered, “I’m not scared.”

The office manager showed Leah how to check-in each day. She scans a little card, then we wait our turn. When we finally walked back to Gantry 1 for treatment, Leah was calm. The wall behind the table is a giant circle on which the machine is rotated and positioned. Taylor Swift was Leah’s music of choice. Leah was allowed to pick the backlight color of the wall. Purple, of course. She was handed a tiny remote control with approximately 12 color choices. Something fun to look forward to each day.

She climbed onto a table with a headrest. She reached for my hand as they positioned the mask over her face. The doctor did not allow cuts in the mask, so there are no openings for her eyes or mouth. The technicians locked the mask to the table and instructed her to wiggle a little until she was in a comfortable spot. There are two handles near her hips that she grips to stay still. She held a handle in her left hand and my hand in her right. The technician told her that she was taking me back to the waiting room. From beneath the mask, she managed to mumble, “For how long?”

“About twenty minutes,” was the answer.

I kissed her hand and guided it to the hold the grip. Then, I left the room, even though leaving her was the last thing in the world I wanted to do.

In the waiting room, I watched the minutes tick by ever so slowly. Eighteen minutes felt like an hour. I thought they would call me back to the room when she was finished, but suddenly out walked Leah. A smile of pride on her face and tiny honeycomb impressions on her forehead, nose, and cheeks. “That went really fast,” she said. Thank God.

A few minutes later, we were on our way to Whole Foods to get a few groceries, and she asked if she actually had radiation. No loud noises, no pokes, no pills. It’s hard to imagine, for both of us, that she received treatment just a few minutes ago.

We decided on a little sightseeing for the afternoon. We took the water shuttle to the New England Aquarium. The air was cool, but the sun was bright and warm. We braved the top deck of the boat and enjoyed seeing the area. Home Away provided aquarium tickets, and we had a lot of fun. Huge sea turtles in the Giant Ocean Tank were my favorite. Leah’s favorites were the touch tanks. We touched sting rays, star fish, anemones, and hermit crabs- very cool.

Tonight, we’re staying in for dinner and putting our feet up.

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11.12.15

Headed to Boston early Sunday morning. I will have family with me for the drive and the first few days. Will be great to have them there to help us get settled. Plus I get tired driving to Summit Mall, so no way I would make the drive by myself. Tomorrow, the hospital will call to confirm treatment for Monday. Feeling overwhelmed by the love and support of family and friends as we continue the journey. Please pray for safe travels and Leah’s acceptance of the road ahead.

11.04.15

Today’s MRI went well. The MRI machines have cinemavision, which are goggles with a movie screen inside. Leah was able to watch Pitch Perfect 2 during the MRI, and this made the whole process much more tolerable. The nurses explained that it dramatically reduced the number of children requiring anesthesia. And for kids like Leah, who need MRIs on a regular basis and aren’t approved for sedation, the cinemavision eliminates a major stress from the medical process. We checked on the price, and it would cost about $80,000 for one system. My wheels are turning… We definitely need to work on getting a system or two at Akron Children’s.

After the MRI, we had a treatment simulation. Leah practiced laying on the table and wearing her mask for 10-15 minutes, and she did an awesome job. The mask does snap tightly to the table, keeping her head in an exact position. They were able to adjust one spot near the neck that was causing discomfort. We’re not sure if eye holes or a mouth hole in the mask will be approved, but she did a great job today, even without those features.

At a new display in the Proton Center lobby, we watched a video explaining how proton therapy works. Every patient has a custom-made aperture, a brass block containing a hole through which the proton beam passes. The size and shape of the hole is designed specifically for the intended target. When the protons reach a certain depth, which is at the tumor, the protons are deposited and absorbed. This process prevents normal, healthy tissue surrounding the tumor from receiving radiation. Interesting stuff…

The new dose of short-term steroids is working well, but causing mild stomach aches. And after a three-day marathon of appointments and a lot of walking, Leah is very tired and her ankles are sore. I’m thinking a good night’s sleep (or two) will get us back on track.