“One of the hardest parts of life is deciding whether to walk away or try harder.”
Throughout Megan’s four and a half year battle with stage 4 Alveolar Rhabdomyosarcoma, she has displayed a determination, toughness and grace that far exceeds that of most adults…let alone a teenager. Unless you have been through it yourself, there is no way to explain and do justice to the physical and mental battle that fighting childhood cancer poses. As a reflect back on her battle, I remember the very first time she threw up from chemo, which became so routine that Megan would simply rinse out her mouth, wipe down her face and lay back down in an attempt to find some relief. I remember when the chemo drug Vincristine caused her so much leg pain that I would have to carry her up the stairs just so she could make it to her bed. I also remember the excruciating mouth sores when she grabbed my hand from her hospital bed, locked eyes with me and said, “Daddy…please make it go away.” I also remember the seemingly constant mental battle of not only fighting back against this dreaded disease, but also the struggle of learning to deal with being a cancer survivor. It was so hard to watch her check her body over and over for any abnormal bumps, or trying to transition back to school after being absent for over a year, or losing so many friends from a lack of contact. When you have lived the totality of this battle and witnessed the devastation it causes, you can start to understand why some kids decide they have had enough. Megan has had friends who have decided that they just can’t do it anymore and they understandably succumb to the vicious grip of childhood cancer. Given all she has endured over the past few years, somehow Megan continues to find the inner strength and motivation to keep fighting back against this ridiculous disease with everything she’s got…even in the face of the devastating news she received this week.
About two weeks ago, Megan felt a spot on her neck that concerned her. After meeting with her oncologist, he was also concerned and ordered an immediate CT scan of her neck. Unfortunately, the scan showed two different spots in her neck which then necessitated a full battery of scans including a PET, chest CT, and an MRI of her neck and brain. Megan had her PET and CT a week ago Friday and on Monday she had the MRI of her neck and brain. Since Megan is extremely claustrophobic, she has to get her brain MRI under anesthesia. On Monday morning, we left at 6:00 a.m. to get to her appointment at CDH. At 7:30 a.m., they called her back and the anesthesiologist talked her through the procedure. Here she is just before going under anesthesia and heading back for her two hour MRI. That ever-present smile is still there, which I know is her way of letting all of us know she’s got everything under control.
Dr. Hayani called to give us the devastating news that Megan’s PET scan showed five different locations with cancerous activity. She has the two spots we knew about in her neck, but she also had another spot in her chest, one in her abdomen area, and another in her lower back. He also told us that he had discussed her case with Dr. Walterhouse at Luries, and they had decided to try a new chemo combination on her to see if it works. They recommended she receive three new chemo drugs: Docetaxol, Bevacizumab, and Gemcitabine. Although this chemo cocktail has not been clinically proven effective with multiple relapsed ARMS, they have found some success with some patients, so they believed it was worth a try. The plan was to start her first chemotherapy infusion on Tuesday at the CDH clinic.
Although Monday was a tough day for Megan, that night we were scheduled to meet with Grandpa and Grandma Bugg as well as Uncle Todd and Gina in Bloomington to celebrate Megan’s graduation and Grandma’s 79th birthday. Megan was determined that she was going, and she made it. We had lots of fun!
We had an 8:30 a.m. appointment on Tuesday at the CDH clinic to meet with one of Megan’s oncologists, Dr. Kar. Since Kenzi is home with us for a couple more weeks, she came to the appointment as well to support Megan. After reviewing all of the scan results with us, he had a very tough and emotional conversation with Megan. He told her that obviously her cancer had returned, and although they were recommending this new chemo protocol, he could not guarantee its success. He said that there would be some very tough side effects, and if she didn’t want to go through it all over again, she didn’t have to. He basically told her that she could give in to cancer and go enjoy the rest of life and see what happens. Of course, Deb and I understood why he had to be honest with Megan, because she is now 18 years old and she deserves to know the full truth about her disease and the lack of available treatments. However, for Megan, it was not at all the message she was wanting to hear. She immediately fought back aggressively and passionately asked if they were giving up on her, because if they were, she was going somewhere else for treatment. Her doctor immediately explained that by no means was he giving up on her, but he had to tell her the truth about her treatment and give her all of the available options, which included stopping treatment. Megan emotionally explained that she was never ever going to quit and she wanted to start the chemo treatment immediately. Dr. Kar suggested maybe waiting a week so our family could take a vacation we had planned, but Megan wouldn’t hear of it. She said she was starting the treatment that day…end of discussion. After Megan’s emotional plea to get things started, the wheels were in motion and it was “everybody in”.
Megan received infusions of Bevacizumab, and Gemcitabine on Tuesday morning. Nurse Kathy also went through all of the potential side effects as well as the different medications Megan would have to start taking to mitigate those nasty side effects of the chemo drugs. To pass the time, Kenzi, Deb and Megan played some Yahtzee, and we all did what we could to keep Megan’s mind off of the chemo.
We got out of there at about 2:00 p.m. and of course, Megan was absolutely exhausted from both the physical and mental strife of the day. She was quickly sound asleep on the ride home.
There was no rest for Megan as on Wednesday morning, she was scheduled to meet with her radiologist in Warrenville to discuss her radiation options. After a long discussion, it was decided that she would receive proton radiation on the largest tumor in her neck. They would also be trying a different type of radiation on the other spot in her neck, which I will learn more about at her appointment on Monday afternoon. However, Megan has been through the proton radiation regiment numerous times. Her only concern was the thought that she would have to wear a full mask again, which for someone who is claustrophobic, is very tough. On Friday, Megan had her next appointment at radiology where they conducted a CT test and determined how best to position her for the proton radiation. This round of proton radiation will be daily for five weeks, which will put her at about 150 total radiation treatments during her lengthy battle. After discussing with Megan and her doctor, they decided they could make it work without the full mask. Although her body will be perfectly still, they will be able to do it with a mask that only comes up to her chin, which was a huge relief for Megan. Here are some pictures of her fitting on Friday.
The side effects from Tuesday’s chemo treatment were bearable this week. She had to take nausea medicine on Tuesday, Wednesday and Thursday, and Tuesday night she dealt with a severe migraine, but so far she is dealing with it. This coming Tuesday, she receives the third chemo medication called Docetaxol which is supposed to be a tough one. During this treatment protocol, she will receive a chemotherapy infusion every eight days, and following six weeks of treatment, they will conduct another full set of scans to determine if the treatment is working. Until that time, we are hopeful that the cumulative effects of these new chemotherapy drugs are not too bad, but we know it will definitely be a significant physical and mental challenge for her.
When Megan met with her radiologist on Wednesday, we had a lengthy conversation about her tumors and all of her options. At the conclusion of the conversation, Dr. Hartsell asked Megan if she had any questions. Megan responded with one powerful question that I believe accurately summarizes her entire approach to fighting childhood cancer. She said,
“Do you believe in me? Because I need you to believe in me.”
For the fourth time, Megan is now back in the ring getting ready to throw down with cancer. What’s amazing is that instead of cancer wearing her down, she is just getting stronger. Each time she relapses, I wonder if this is the time that she says she is tired and has had enough. Instead, each relapse and each resulting battle only further strengthens her determination, passion and resolve to defeat cancer once and for all.
Megan…Do we believe in you? We would be foolish not to!!!
“I will win. Not immediately. But definitely.”
The battle continues this week…