It has now been 628 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer. There are definitely two distinct aspects of cancer recovery. The first is the physical recovery from cancer and its corresponding treatments, which are brutal in nature. The physical toll that chemotherapy and radiation takes on the body is nearly immeasurable, and Megan is still recovering from certain ramifications of her treatment. Although her foot drop is drastically improved, its impact on her gait is still noticeable. Her body became so weak during treatment, so recovering her strength and stamina is an ongoing process some eight months following the conclusion of her treatments. She has to go to her pediatric cardiologist in January, 2017 to see if her chemo-induced heart damage is starting to recover or not. Her hair is still not growing in the spot where she had radiation near her left eye, but luckily, her hair is growing long enough to cover that up. Megan is concerned about her left eye looking different than her right, which Dr. Salvi said is caused by the impact of radiation on that particular area of her body. Her skin is still discolored on her left forearm from the radiation burns. Although the physical toll of cancer treatment is rough, I have come to believe that it pales in comparison to the process of recovering emotionally from cancer.
Although Megan is doing very well, there are some aspects of the mental recovery that continue to challenge her on a daily basis. On Tuesday, she had her monthly check-up at CDH with her oncologist. Although she just had her clean scans a couple weeks ago, there is still that ever-present fear in the back of her mind that her doctor might just find a tumor during his physical exam. Megan has gotten quite adept at telling her oncologists everything that could possibly be bothering her, because she knows the doctors will check those areas of her body extra close. While undergoing treatment for cancer, Megan learned that she has to be her own best advocate, so even though it goes against her introverted nature, she no longer hesitates to ask her doctors anything and everything that is on her mind. As a parent, it’s hard to explain the anxiety that you experience watching Dr. Salvi carefully check Megan for tumors. Although it only takes a few minutes, it seems like an eternity as you wait for him to let you know that everything looks fine. If I am feeling that anxious, I can’t even imagine what Megan goes through as she lays on the examination table. Luckily, we once again got the all clear from Dr. Salvi, and with those words, I could see the relief in Megan’s eyes. The mental stress of being a cancer survivor is very real.
Following her appointment at CDH, Megan then had to go to Marionjoy for an appointment with Dr. Pavone, who is treating her foot drop. Dr. Pavone was very pleased with her progress, and said that if she continues on her current path, she should be finished with treatment in January, 2017!!! Following her appointment with Dr. Pavone, she then stayed at Marionjoy to get fitted for new nightcasts. It was a very long afternoon as we didn’t get back home until 6:00 p.m., which is when Deb and I immediately got in the car and headed to Kenzie’s volleyball match. Megan was pretty exhausted and had some homework to complete, so we let her stay home with her friend Emma.
As I stated in last week’s post, Megan is becoming motivated to find an avenue to give back to other pediatric cancer patients and their families. She has some really amazing ideas, and she is so anxious to get started on them. On Wednesday night, she and I met with Shawn Hamilton and Chris Shirkey, who were the co-directors of the “Team Megan 5k”. They have agreed to help her with her dream of raising funds to help other children who have been afflicted by this terrible disease. We met with them for about an hour and a half to get the ball rolling. As we concluded the meeting, I asked Megan if she had any more questions for us. Her response was, “So…how long will it take to get this started?” Hopefully, we can keep up the momentum and help her reach her philanthropic goals. We are so appreciative of Shawn and Chris agreeing to assist Megan and our family with this important mission. There will be much more to come about Megan’s vision in future posts.
Megan continues to adjust to life as a full-time student at Coal City High School. She has received tremendous support from her counselor, Mrs. Dransfeldt, who Megan really enjoys confiding in. She also continues to receive home tutoring from her favorite teacher, Ms. Erb, whenever she needs to get caught up from missing school. When she missed most of the day on Tuesday to attend her doctor appointments, Ms. Erb came over Wednesday after school to help her get caught up. Megan adores Ms. Erb and the two of them work so well together. Megan’s confidence with her school work is still lacking, which is understandable given the fact that she was had not been a full time student for 20 straight months during and immediately following her treatment. At times, she can get very frustrated that she is behind, but after working with Ms. Erb, she usually feels much better. Each day at school gets a little better for her both academically and socially. Once again, transitioning back to school is just another example of the mental challenges recovering from cancer carries with it.
On Friday, Kenzie took a college day to go visit the University of Iowa. We had gone there once, but it was on a Saturday in the summer, which really didn’t give her a true feel for the campus. This time, she signed up for a formal tour, which gave her a much better idea of what her life would be like as a Hawkeye. She has already been accepted there, but she is still waiting on her acceptance status from the University of Wisconsin and the University of Minnesota before making her final decision. Iowa was a beautiful campus, and she loves the amazing teaching hospital they have. Given that she wants to become a pediatric oncologist, she was really intrigued by the brand new children’s hospital that will completed this November. I have no idea where she will end up, but it has been fun to spend time with her as she visits various schools prior to making her decision. Here is a picture of her showing off her VIP badge prior to the opening presentation on Friday.
Kenzie’s high school volleyball team continues to play very well as they are now 17-6 on the season. Their losses have all been to much larger schools or private schools, and they are undefeated in conference play. Since it is her senior year, her relatives have made a concerted effort to come and see her play as often as possible, which Kenzie really appreciates. Considering that none of them have less than an hour drive to get here, we all are appreciative of their support. At Thursday’s game, Uncle Todd, Gina, Cousin Danny and Grandpa and Grandma Bugg all made the trip. Following the big win against Seneca, everyone hung around for pizza at our house. It was so much fun! Of course, in all the excitement, I forgot to get a picture of everyone. However, I did manage to get this picture of most everyone gathering around the computer to watch a rival volleyball team play via live stream.
Here are a few other pictures from another tremendous week for Megan as she continues to remind cancer that when it picked her, it definitely had no idea who it was messing with! Until next week…