We are quickly closing in on the four year anniversary of Megan’s battle with Stage 4 Alveolar Rhabdomyosarcoma. It was Christmas Day, 2014 when we discovered the tumor on Megan’s arm, and five days later she was officially diagnosed. The moment Dr. Hayani informed Megan that she had an aggressive form of childhood cancer that had spread throughout her body is etched in my mind forever. He explained what type of cancer it was and that she would be undergoing 54 weeks of intense chemotherapy along with radiation treatments. Of course, Deb and I had tears in our eyes as we watched him break the devastating news to our beautiful then 13-year-old 8th grader. As soon as Dr. Hayani left the room, Megan looked at both of us and sternly said, “Please don’t say ‘I’m sorry”, because that makes me think I’m not going to win, and I’m going to win.” From that moment forward, Megan’s determination never failed her. Don’t get me wrong…she went through some very tough times where I’m sure she wondered if she could go on, but she always powered through even the darkest of moments. When she completed her 54 weeks of treatment and was officially declared to be in remission, I remember her saying, “It might sound strange to say, but I always knew I was going to win.” And win she did!!! We celebrated like never before, because our little girl was about to take the life back that cancer so rudely tried to steal from her. However, here’s the heartbreaking thing about cancer…it doesn’t give up easily. Cancer’s grip is mighty, and even the bravest of souls must continue to stay vigilant and determined to take it down once and for all.
Since Megan was initially declared in remission in January, 2016, she has now relapsed three times. The first was a tumor they found in her left breast, which was surgically removed. Following that surgery, Megan went through another 36 weeks of chemotherapy and another six weeks of proton radiation. Following her 36 week chemotherapy protocol, a CT scan showed a tumor in her back, which was treated with yet another round of proton radiation. Then about five months ago, her three month scan showed a small growth in her chest very near her aorta. Because if it’s location, her doctors chose to monitor it via frequent scans because surgery or a biopsy would be very risky. An accidental puncture to her aorta could have lethal consequences. Fortunately, the first couple scans showed that the tumor was barely growing at all. In fact, her last PET scan of two months ago actually showed less cancerous activity in the tumor than the first PET scan revealed, which was a very promising sign. Last Monday, Megan went in for another CT scan, and we were hoping for the best. Dr. Hayani called on Tuesday afternoon to break the difficult news that the tumor had more than doubled in size over the past two months. The tumor was now about 8 centimeters in length and three centimeters wide. To complicate matters worse, the tumor was also working it’s way completely around her aorta, which if left unchecked could cause dire consequences to the blood flow from her heart. On Thursday morning, we went to the CDH clinic to meet with Megan’s medical team to determine a plan of action.
By the way, while we were at the clinic on Thursday, Megan got to see Dr. Salvi. We are devastated that Dr. Salvi is retiring at the end of this year. He is an incredible doctor and has become such an important part of Megan’s life. We are so happy for him, but we will miss him dearly.
After consulting with the surgeons, her medical team believes it is still far too risky to try and get a biopsy to verify that the tumor is indeed cancerous. Given Megan’s history, all indications are that it is probably a relapse of her ARMS, but without a biopsy, they cannot be certain. Instead, they have decided that the best course of action is to use proton radiation on the tumor. Her doctors believe she will go through about six weeks of daily radiation treatments, and then they will scan her again to see if the radiation has been successful. Once she has completed this radiation protocol, she will have endured well over 100 radiation treatments on various parts of her body.
Although we were obviously upset with this news, we were not completely surprised as her doctors had warned us previously that more radiation was a likely outcome of her present tumor. Also, there is some very good news in that the CT scan of her chest and abdomen did not present signs of any further cancerous activity. Most relapses of ARMS usually take place in the lungs or brain, which is very difficult to treat. Although we wish Megan did not have any relapses, she is very fortunate that none of her relapses have taken place in any major organs. That is definitely a blessing! Also, Megan’s relapse tumors have always responded to proton radiation, so we have no reason to believe this current tumor won’t respond similarly. It might sound crazy to hear this from a parent, but I am thrilled that Megan is only dealing with one tumor. Remember…everything is relative when fighting cancer. If you don’t continue to search for the silver lining, you will drive yourself crazy.
Megan has another busy and stressful week ahead. Since statistics show that an ARMS relapse usually presents itself in the lungs or the brain, Megan’s doctors ordered a brain MRI just to be sure. The CT showed that other than the current tumor, her torso is clear, but she has not had a brain MRI in some time. The brain MRIs are very tough on Megan because she is so claustrophobic. As a result, she has to be under anesthesia to get the scan completed, which makes for a long and stressful day. On Tuesday, Megan will be heading to CDH for her brain MRI under anesthesia, and we hope to have results the next day. Then on Thursday, she has to get a PET scan to check the rest of her body. Her doctors also want to check the PET to see how much cancerous activity there is in her current tumor. The PET will take place in Warrenville, which is only about 10 minutes from her hospital. We are really hoping that the PET results come in on Friday, because there is nothing worse for Megan than going through a weekend with “scanxiety”. Needless to say, it’s going to be a very long week.
Once all of her test results come in, we will meet with the radiology doctor at the proton center to begin the process of planning her treatment. Proton radiation is such an exact science that it takes time to get everything set up for her treatment. Megan is really not happy that she has to wait to start her proton radiation, but there is a very good chance that it won’t be ready to start until after Christmas. Like usual, she is ready to step into the ring as soon as possible to resume the fight and get it over with, so her doctors tried to assure her that the extra couple of weeks will not make a difference in the success of her treatments. The wait is just the reality of proton radiation technology.
Although all of us do our best to reassure her, none of us can ever really understand what she is going through every hour of every day. Considering the fact that she knows she has a cancerous tumor growing in her body, she is doing remarkably well. She will still go to her CCHS class tomorrow morning and then go to her night classes at JJC that evening. I’m sure she will still go to work at the dance studio on Wednesday and Thursday nights. I’m also sure that in the quiet times, there will be moments when she is scared, because who wouldn’t be. She’s definitely entitled to her feelings without judgment. However, over the past four years, cancer has caused a change in Megan. Prior to this journey, she was a painfully timid 13 year old who struggled to make eye contact when she spoke to you. After staring cancer down for the past four years, she has grown into a strong and determined young woman who has become her own best advocate. It’s true that cancer is back, but it’s also true that Megan is stronger than ever before. I’m definitely not a betting man, but if I were, I know where I would be putting my money.
It’s time for Megan to put the gloves on and step back into the ring for yet another round. This time, let’s hope she lands the final knock-out blow.
“It’s hard to beat someone who never gives up!”
Until next week…