April MRI Results

Leah had an MRI yesterday, and the results are good. The tumor is stable, meaning there’s been no change since her October MRI. It’s been twenty-one months since the last progression which was discovered in July 2017. In the past, there was evidence of progression at twenty months. Definitely feeling a little triumphant that we cleared the twenty-month mark this time. Her next MRI will be in one year, unless we have concerns.

Unfortunately, remission or NED (no evidence of disease) will never be a part of our journey. Whenever I read stories about people who have “beat cancer,” my heart aches a little. It’s very hard to accept that this tumor will never be dead or gone. Leah has suffered so many horrible side effects of treatment, and I often feel that it was all for nothing.

Leah’s 15th birthday is this Saturday, and at her MRI yesterday, many of the radiology staff wished her a happy birthday and said they feel as though they’ve watched her grow up. It’s hard to believe it’s been six and a half years since her diagnosis.

After I’ve changed into scrubs, I’m allowed to join Leah in the MRI room. I sit in a wooden chair, right next to the machine, so she can see me if she needs. If I peek through the MRI tunnel, I can see the movie she is watching in the mirror of the cage that holds her head in place. I’ve tried reading to pass the time, but I can’t focus my mind on anything but her while she’s lying there for close to an hour and a half. Yesterday, as I waited, the past six and a half years flashed before me like a movie. I saw her crossing the bridge- running, jumping, spinning, just like in dance class- from the parking deck to the hospital for her first MRI- wearing her Justice yoga pants and a long sleeve t-shirt. I remembered telling her it was our lucky day when the receptionist was able to locate the MRI order that I forgot to bring to the appointment. I saw her playing with puzzles on the radiology waiting room floor, surrounded by kind nurses and the child-life specialist, as I listened to a doctor on a land line tell me, “There is a mass on Leah’s brainstem. And there could be grave consequences.” And so it began, the chemo, the pain, the sadness. When the MRI was over yesterday, for the first time, I really didn’t want to know the results. I only desired one more day of peace- just the way things are, nothing worse. Words can’t express the relief I felt when I received the MRI results this morning. 365 beautiful days ahead, just the way things are…

This weekend we will celebrate Leah’s birthday by FINALLY getting her ears pierced, and of course, presents and cake. Last week we celebrated a little early with our dear friends who visited from Florida. They are our sunshine! ☀️

Finally, thank you so much for supporting Gracie during Senior Survivor at Stow-Munroe Falls High School. Gracie and Jordy raised $2024.25 for St. Baldrick’s in honor of our Brave Strong Girl! Your support fills us with hope and strength, and helps us find good in our childhood cancer journey. We are so grateful. 💛

It’s Finally Here!!!

Senior Survivor!!!

Gracie and Jordy have been planning for Senior Survivor since the 6th grade! They will be camping at the high school starting tomorrow, selling baked goods and raffle tickets to raise as much money as possible for their chosen charity- St. Baldrick’s!

They chose this charity in honor of our Brave Strong Girl!

Here’s the link if you’d like to donate and help them avoid elimination. Please share the link on your social media!

https://www.stbaldricks.org/fundraisers/mypage/3708/2019

Best of luck, Gracie and Jordy! 🍀

Gracie Goes Gold #morethan4

September is Childhood Cancer Awareness month! Only 4% of federal funding is solely dedicated to childhood cancer research. And that is never going to get us close to a cure. So what do we do? We sell t-shirts. We sell lemonade. And we run! Gracie’s goal is to run 100 miles during the month of September! She will track her soccer miles and run additional miles outside of soccer. She will post updates on Instagram and Twitter @gracie_merriman. Please share this link- Facebook, Instagram, Twitter, and email. Thank you!!! 💛

https://www.alexslemonade.org/mypage/1536210/member/392395

My Girl

For the past few years, Leah has wanted a “Cancer Sucks” t-shirt. I had a list of reasons why she couldn’t have one.

“Sucks” is not a nice word.

We need to think positive.

The other moms and dads will think we’re bad parents. (Always a good card to play.)

But a few months ago, I finally caved. Now, a navy blue t-shirt emblazoned with white letters hangs in her closet, awaiting the next negotiated appearance. The truth is, it’s an ugly word, but fitting. Cancer sucks.

Leah had an MRI last week. The tumor is stable, meaning it hasn’t changed or grown since her previous images; however, there is still a significant blood supply to the tumor. This tells us that radiation did not cause it to die-off, as we had hoped. The last instance of growth was nine months ago, and this is typical for ganglioglioma. It grows slowly and sporadically. Months and even years can pass without progression.

Currently, Leah is not receiving treatment of any kind. We have exhausted chemotherapy and radiation, and there aren’t any other proven treatments available.

While I’m embarrassed to admit this, prior to being thrown into the fires of cancer, I had a wildly idealistic view of cancer treatments. Find the best doctor, research your options, and select your treatment. If only it were that simple.

I’ve learned that the best doctor is not the most knowledgeable or most experienced, but a person who is a good listener, compassionate, and dedicated. I’ve learned that medical research reports can be misleading for two reasons: dishonest authors and human variation. Finally, I’ve learned that people “qualify” for treatments, rather than “select” them.

Many of the new treatments featured in the media are available to a very small population of patients, and they are only accessible by qualifying for a trial. Age, tumor type, previous treatments, and the availability of tumor tissue only name a few of the qualifiers.

Immunotherapy, such as the poliovirus, is at the forefront of cancer research; however, it is not yet an accessible type of treatment for cancer. Most new therapies are being developed for aggressive, fast-spreading cancers. Therapies tested in adults are not always suitable for children. And new treatments can have grave consequences.

A wise doctor once cautioned me, that if you look long and hard enough, you will find a doctor who says what you want to hear. So for now, we are not desperately searching for a secret cure that’s eluded the masses. Instead, we are resting easy with the report that the tumor is stable.

In the beginning, killing this cancer was at the top of the list. Today, the focus has shifted. Today, we focus on living our best life. Leah still attends physical therapy twice a week to improve her strength. She’s definitely made progress this past year, but the gains are slow. There are days when she feels well, and other days are complicated by pain and fatigue.

She’s still attending school using the VGo, and despite her medical condition, she’s had a solid year of academic growth- a huge accomplishment in my book.

Leah’s next MRI will be in October, at which time she’ll be fourteen and a half years old. When I think about the fact that all of this started when she was only eight years old, I’m sincerely overwhelmed with admiration for Leah. The past six years have been a long, difficult road. My little girl has shown more strength, bravery, and perseverance than I ever imagined a young heart could hold.

And she has most definitely earned the right to call it like it is.

Cancer sucks.

Good News

We are happy to report that Leah’s October MRI showed no evidence of tumor progression. We are looking forward to the holidays- the baking, the shopping, the decorating, and best of all, just being at home. 🎄

I wish I could say that no progression means Leah is feeling better, but unfortunately that’s not the case. Most days, she doesn’t feel well. Symptoms range from headaches and dizziness, to feeling achy all over. We are working with a new specialist at the Cleveland Clinic to help manage symptoms. 

Currently, Leah is not taking steroids or receiving chemotherapy. Due to the fact that there’s been no tumor progression since July, we will not pursue a new anti-tumor treatment at this time. Instead we will focus on using medications to simply help her feel better. 

Leah has been attending school using a VGo. The VGo is a robot stationed at the school, and Leah controls it from home using her iPad. She can see and hear everything in the classroom, and they can see and hear her. It’s pretty cool. She’s learning and happy, and we’re very grateful that the school district provided her this opportunity. We’re also grateful for the teachers that have welcomed Leah and this new technology into their classroom. Recently, the Akron Beacon Journal reported on Leah’s new setup. Here’s the link, if you’d like to read about it. 

https://www.ohio.com/akron/news/education/robotic-assistant-helps-stow-munroe-falls-middle-school-student-finish-eighth-grade-year-from-home

It was great to see so many people in our community wearing their Brave Strong Girl shirts this September in honor of childhood cancer awareness month. It’s crazy how much has changed in the past five years. When Leah was first diagnosed, it seemed like childhood cancer awareness was almost nonexistent. Now, childhood cancer awareness is supported by Lokai bracelets, Ivory Ella, professional athletes, Amazon, and numerous national monuments that participate in “Light It Up Gold”….  The change is heart warming.

Also, thank you to everyone who ordered one of the new Brave Strong Girl shirts. We were proud to donate $950 to St. Baldrick’s Foundation!

If you visit the Akron Children’s Tree Festival next week, be on the lookout for the beautiful tree donated by Stow teachers in honor of Leah and our friend Jackson. A few of my dear friends organized the donation. 

Finally, thank you for your continued prayers. We are thankful. ❤️

Brave Strong Girl Shirts

A few family and friends wanted to order new BraveStrongGirl shirts so we launched a new campaign.

https://www.bonfire.com/bravestronggirl-1/


The shirts are available in dark gray or black. Available styles: tshirt, long sleeve shirt, hoodie, crew neck sweatshirt, baseball, youth.

The campaign is open for seven days.

Orders will be received between October 3rd and October 10th.

There is a $5 flat fee for shipping.

Proceeds will benefit the St. Baldrick’s Foundation.

https://www.stbaldricks.org/

Thank you for your continued prayers. 🙏🏻❤️