Megan recently learned that the tumor located near her aorta has more than doubled in size over the past two months. Because of the tumor’s precarious location, her medical team felt it was too dangerous to conduct a biopsy, and without a biopsy there is no way to know for sure that the growth in her chest is cancerous. Also, given the fact that the tumor seemed to be growing so slowly, her medical team opted to monitor the growth. However, given the results of her most recent scan that showed the tumor had started to grow more rapidly, her doctors determined that it was time to start treating the growth as a cancerous tumor. The other complicating factor was that her latest scans showed that the tumor had started to wrap its way around her aorta, which left untreated could have dire consequences. Last week, Megan completed another PET and brain MRI, which both came back showing only the one growth in her chest. Although we were disappointed that the tumor had started to grow, we were thrilled that her scans showed she is only dealing with one tumor, which made radiation a viable option.
Due to a lack of adequate Federal funding to research more effective and less toxic treatments for childhood cancer, these kids have limited treatment options. Megan has already been through the initial 54 week chemotherapy protocol that has shown to be the most effective against Alveolar Rhabdomyosarcoma. During her first relapse, she went through another 36 weeks of chemotherapy, which is another standard chemotherapy protocol for ARMS. Her second relapse was in her back, which they were able to successfully treat with proton radiation. The reason we were so happy to know that this third relapse is isolated to one tumor is because there are really no research-proven chemotherapy options left for Megan. Therefore, absent a clinical trial that she qualifies for, proton radiation is the only proven effective treatment option available to her. That’s why we were holding our breath for the results of last week’s scan, because had they shown multiple tumor locations, the news would have much more challenging for Megan. This is just another reason why Megan is so passionate about raising money for cancer research. She doesn’t want to see any more kids go through what she has experienced over the past four years.
On Monday, Megan had an appointment with her radiologist at the proton center in Warrenville. Originally, her doctors had told her that she probably wouldn’t be able to start her proton radiation treatments until after new years, which really concerned Megan and us. Well…Megan and her mom can be very persuasive, because when they called me on the way home from Monday’s appointment, they said that her treatment would most likely get started this week. To make that happen, Megan had to go to her original morning appointment at the proton center, and then go to CDH to meet with Dr. Hayani. He wanted to give her another physical exam just to double check four areas that lit up slightly on the PET scan. Luckily, he said he didn’t feel anything abnormal. After that, Megan had to go back to the proton center to get another CT which they use to properly calibrate the proton radiation machine. Although it was a very long and stressful day, it was worth it to get her proton radiation protocol started.
On Thursday afternoon, I received a phone call that they would be able to start Megan’s five weeks of treatment this Wednesday at 1:00 p.m. She will receive treatment for 25 straight weekdays, which her radiologist believes will effectively treat her current tumor. This will be Megan’s 6th proton radiation treatment schedule, and it has always been effective for her, so we are hoping that Wednesday is the start of history repeating itself.
Knowing that you are about to step back into the ring against a foe as mighty and evil as cancer can be overwhelming. In order to keep her mind occupied, Megan did her best to stay busy this week between school, work and friends. One of the highlights of the week was going to goat yoga with her friend Emma. Yes…you heard me right…GOAT YOGA!!! Readers of this blog know what an animal lover Megan is, so when she heard that there was such a thing as goat yoga, she was all in. It was so nice of Emma to treat Megan to such a fun day on Saturday. Here are a few pictures from her goat yoga adventure.
Kenzi is in the midst of her final exams at the University of Wisconsin. She had one final last Tuesday and then two more on Saturday. She has two more finals on Wednesday, which will end her semester. To give her a little break after her two finals on Saturday, we all drove up on Sunday to pay her a visit. Deb, Megan, Kenzi’s boyfriend Nick and I all headed out early this morning to take Kenzi and her good friend Ellyn to lunch. We also brought her a care package with all of the meals she and Ellyn will need to finish out the semester. It’s been a great semester for Kenzi, and she is working hard to finish strong. We are so proud of her!!! It will be so good to have her home late Wednesday night for her winter break. There is nothing better than having our family all together for the holidays.
Although Megan is the toughest teenage girl I have ever met, even the bravest of warriors experience moments of frustration, doubt and despair. This past week started out rough for Megan as she was really down about having to go through treatment yet again. She was questioning if this will ever end, because, in her words, the tumors just keep coming. She was tired and not sure if she could go through treatment yet again…and who could blame her for having such thoughts. Sometimes Megan makes this journey seem so much easier than it is. Megan gets so frustrated by the commercials on television that show nothing but smiling, happy little bald children, because she says that such images do not portray the real story. Of course these kids are brave, but they are also going through physical and mental torture on a daily basis, and to hide this reality from society can send an unintended message that fighting childhood cancer really isn’t that bad. Sometimes, people need to see the raw truth before they are motivated to make a change and the truth is that fighting cancer is absolutely brutal. It puts these kids through a mental and physical hell that you would not believe unless you saw it yourself. It’s why we have to do better for these kids, because NO CHILD deserves to go through what they are going through as they fight for their lives. So although Megan puts on a brave face, there are times like this week when this battle gets her down. Fortunately, Megan has an uncanny ability to bounce back from the low times and get herself mentally prepared for the fight in front of her. The time to feel sorry for herself is over and she is ready to fight.
It’s time to start another chapter of this journey. Let’s hope it’s the final chapter of a story that ends with a glorious victory. Until next week…