As I shared with friends and family Megan’s latest setback in her recovery effort, I began to reflect on the idea of perspective. Megan and our family have been through a lot over the past four years. There is nothing you can do to prepare for what it is like to travel this journey with your child. After watching your child fight for her life for so long, your perspective changes on so many things. The seemingly insignificant yet beautiful moments in life that used to pass us by with nary a thought are now treasured by our family. When you don’t know what the future will bring, each holiday season is held close to our hearts. The little inconveniences in life that may have caused angst in the past now slip by without much of an emotional reaction. Life’s daily challenges that we may have obsessed over in the past don’t seem nearly as important anymore. Cancer has changed our family’s perspective on life in immeasurable ways, and for the most part, those changes have been a good thing because we now place a greater value on what really matters in life–family, love, health and happiness. We no longer have to decide whether the cup is half full or half empty, because instead, we are just happy we have a cup with something in it to drink.
This past week has been a whirlwind of activity following last week’s CT scan which showed that the tumor in Megan’s chest had more than doubled in size. Her current tumor is very near her aorta, which made getting a biopsy nearly impossible. We have known this tumor has been there for about the past five months, but her monthly scans showed that it was very static. In fact, her PET scan from a couple months ago showed that the tumor was actually less cancerous than the previous scan, which was very encouraging. Needless to say, we were not surprised her latest CT showed the tumor was still there, but we were disheartened to learn that it was starting to grow more rapidly. In response, Dr. Hayani ordered a brain MRI and a PET scan this past week to make sure they had all of the baseline data necessary before determining a treatment plan. If her scans showed no more cancerous activity other than the single tumor in her chest, then proton radiations seemed to be a viable option. However, if the scans showed anything else, we would have to go back to the drawing board, because Megan has pretty much exhausted all of her chemotherapy options. Due to the severe and long-term lack of funding for childhood cancer research, our kids are still being treated with virtually the same medications that I would have been treated with as a child. It’s such a shame our country has not placed more of an emphasis on finding less toxic and more effective treatments for childhood cancer, but it is what it is. That’s why Megan is so determined to raise awareness and funding so that future kids will not have to go through what she has over the past four years. By the way, Megan is still taking donations to fund Dr. Walterhouse’s promising research being conducted at Luries Children’s Hospital in Chicago. You can make a direct donation at her personal Circle of Friends fundraising page. As Megan likes to remind anyone who will listen…when funding is so limited, every dollar matters!!!
On Tuesday morning, Megan had to be at CDH at 10:00 a.m. to check in for her brain MRI. Since she has such bad claustrophobia (which stems from her first full body MRI that she received four years ago upon her original diagnosis that last over three hours), Megan has to receive her brain MRIs under anesthesia. She has done this so many times in the past that she knows the routine. She was very very happy to see her favorite anesthesiologist, and as usual, she went through the process like a champ. Here is a picture of her before the MRI and then after as she enjoys a Fig Newton cookie 🙂
As I have explained before, for a cancer patient, “Scanxiety” is the worst. It’s the severe anxiety that accompanies scan results. Just imagine what it’s like waiting for scan results that in reality are determining your mortality. Sometimes I think Megan handles the waiting better than her mother and I. We were so relieved when Dr. Hayani called at about 7:00 p.m. that night to tell us that her brain scan was clear!!! That was one hurdle cleared!!!
On Thursday morning, Megan had to be at the Cancer Center in Warrenville at 7:15 a.m. for her PET scan. Once again, she has been through so many of these that she really doesn’t get overly nervous about the scan itself. Upon arrival, she had her port accessed and then received the radioactive material that lights up during the PET scan. After receiving the radioactive solution, she has to remain still for one hour. After that, they take her to the PET scan, which takes about 40 minutes to complete. Since she couldn’t eat prior to the scan, she was starving afterwards and wanted to go to one of her favorite breakfast places nearby, Buttermilks. She was pretty happy when her breakfast arrived!!!
Luckily, Megan was scheduled to work at the dance studio on Thursday night, so she was able to keep her mind off the PET scan results, but Friday morning was tough as she went to school not knowing the status. Dr. Hayani called at about 9:30 a.m. with the results. He said that the tumor in her chest lit up brightly on the scan, which shows that it is cancerous. Without a biopsy, we don’t know if it is a relapse of ARMS or a secondary cancer which is often the case as a result of the toxic treatments Megan has received over the last four years. He also said there were four other spots that lit up a little bit, but at this point, those spots could be anything because they are so small. This was the best news we could have hoped for because it means she is dealing with only the single tumor, which makes proton radiation a viable option for her.
Remember when I said that as you travel this cancer journey, your perspective changes? Most parents would be rightfully devastated to learn that their child has a cancerous tumor in her chest wrapped around her aorta. However, for us, that’s the best news we could have received! Megan’s tumors have always responded to radiation, so there is no reason to believe that this one won’t respond as well. It’s true that this is a third official relapse for Megan, but the positive news is that none of her relapses have been typical for ARMS. Typically, an ARMS relapse comes back in the lungs and is very aggressive. So far, Megan hasn’t experienced that and although she has a tumor in her chest, there is still reason to celebrate. Like I said earlier in this post, it’s not about whether the cup is half full or half empty, because Megan still has water in her cup and she’s ready to drink it.
As expected, Megan is very anxious to get her proton radiation treatment started, so we expedited an appointment with her radiologist for early Monday morning. Since Megan is her own best advocate, I have no doubt that she will make sure no grass grows under the tires. By next week’s post, we should now what her proton radiation protocol will look like.
On Friday evening, Megan was so excited to attend the CDH Christmas party. So many of those amazing professionals have become like family to us, so anytime Megan gets to catch up with them is very rewarding for her. She was also so happy that her good friend Katelyn made the trip with her. Here are a few pictures from the awesome event.
On Monday morning, Megan meets with her radiologist to plan the next round of her battle. Of course we wish Megan was rid of cancer for good, but after receiving all of her scan results, our perspective is that things could have been so much worse. We can either sit back and feel sorry for ourselves this holiday season, or we can follow Megan’s lead and never give cancer the satisfaction of knowing it got the best of us. Megan’s attitude continues to be one of never giving in and fighting with everything she’s got. As Michael Douglas once said,
“Cancer didn’t bring me to my knees. It brought me to my feet.”
Megan is still standing tall!!! Until next week…