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.

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Thank You Stow-Munroe Falls School District Staff

The Akron Children’s Tree Festival has always been one of our favorites… But this year was the BEST! ❤️🎄

This Brave Strong Smart Beautiful Girl melts my heart… 

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. 🙏🏻❤️

July MRI

Leah had an MRI on July 6th. We met with her doctor the following day to discuss the results. The images showed no improvement in the existing tumor and damage. There was also one new area of change in the tumor that is likely progression.  The images were sent to Boston for review. Yesterday, we heard from Boston, and they are in agreement. The new area of change is likely progression, but we cannot be certain. If it’s not progression, it’s additional damage from radiation. 

The plan is another MRI in October with a few extra images. We are also looking into a Methionine PET study, which may give us additional information. Time should provide some clarity.

In the meantime, it’s life as usual. We pray that there are no new symptoms in the coming months, and that we have a smooth start to the new school year.

On another note, we did find a new pulmonologist. Yay! Had an initial appointment and following up again in a few months. I think we’re on the right track, finally!

Blink

I just started reading blink by Malcolm Gladwell. This is what I read tonight:

“Next time you meet a doctor, and you sit down in his office and he starts to talk, if you have the sense that he isn’t listening to you, that he’s talking down to you, and that he isn’t treating you with respect, listen to that feeling. You have thin-sliced him and found him wanting.” p43

Just what I needed to hear. I’ve been struggling with whether or not to return to the pulmonologist that was so disappointing. 

We don’t return to restaurants when we don’t like the food. We don’t return to stores when we don’t like the merchandise.

It’s interesting to think about why I was even considering going back… Do we hold doctors in such high esteem that they are an exception to the rule? 

That, most certainly, should not be the case. 

I’ll be on the hunt for a new pulmonologist first thing tomorrow morning. Fingers crossed. 

June Update

Hard to believe two months have passed since Leah’s last MRI… But here it is June, and the July MRI is just around the corner. 

Leah’s last MRI showed an increase in damage from the proton beam radiation. Leah was completely off steroids and chemotherapy for the first time in over a year, and doctors believe the true damage was finally unmasked.

In January, when Leah was losing sensation and function in her right leg, I just kept praying, “Please, God. Please don’t take her right arm. Give her this one thing. Please.” I drew a line in the sand. And He crossed it. Just prior to the April MRI, Leah lost some function in her right arm and hand. Everything she did with her right hand became difficult: eating, brushing her teeth,  writing… And the most heart breaking, her ability to draw, color, and paint. Her artwork was her peace and new-found, quiet happiness. And suddenly, that too, was taken away. 

Despite the constant decline, we’ve  continued with physical therapy and occupational therapy two to three days each week. There has been some improvement in her arms and hands. At therapy, she’s able to walk on the treadmill for 8-10 minutes without the use of a harness. She can also walk a short distance with a walker with some assistance. My girl is constantly working to make her body stronger. She never, ever gives up.

After the last MRI, I was convinced that we had seen the worst of it. That things could only improve from this point forward. But sadly, just this past Friday, a swallow study revealed that Leah is aspirating when she drinks liquids, and she is having difficulty swallowing solids. Moving forward, we will add a thickener to her liquids and remind her to swallow twice with each bite of solids. Surprisingly, the thickener is not awful. It doesn’t change the taste of the drink, only the consistency. Leah has been a soldier about this, as usual. Never complaining.

This new finding may explain some of the respiratory problems we’ve been facing in the past few months. The challenge is finding a pulmonary doctor to look at the big picture. After our frustration with Leah’s pulmonary care at Akron Children’s these past few months, we received a prior authorization to see a pulmonary doctor at the Cleveland Clinic. This experience proved to be just as disappointing. At the first visit, the doctor changed Leah’s respiratory regimen. I felt hopeful that we were finally on the right track. But when we followed up a month later, the doctor still hadn’t looked at her chest X-rays, CT scan, and sleep study as promised. Not only had he not looked at them, but he misplaced them. They were nowhere to be found as we sat waiting. Then, throughout the appointment, he seemed to keep forgetting that she has a brainstem tumor, which plays a critical role in her respiratory function. There really are no words to express how disappointed I felt. It was two hours in the car driving to and from, and an unproductive hour and a half appointment. It was pathetic. I’m not sure what we’ll do next. 

Daily, I search for information on brainstem ganglioglioma, and I continue to find very little information. I read over and over again that it’s incredibly rare and undocumented. I just can’t understand, if this is the case, why nobody is interested in documenting her case- especially the tragic side effects of proton beam radiation. It just doesn’t make sense. How will there ever be advancements in treating this rare cancer when nobody is paying attention? More importantly, the next child with a brainstem ganglioglioma- just that one child- might benefit if her doctor knew about Leah’s case. That one child might be spared the devastating effects of proton beam radiation…

Please continue to pray for Leah’s complete healing. With God, ALL things are possible. 🙏🏻