The second week of Megan’s three week chemotherapy cycles continues to be a tough one for her. We were hopeful that changing from Neulasta back to Neupogen would help her, but it seems that this just may be her normal reaction to the week two chemotherapy combination she receives. On Tuesday, Megan went to the CDH clinic to receive her two chemo infusions and on Wednesday, she was actually doing pretty well, but the side effects hit her hard again starting Thursday afternoon and lasted through the evening on Saturday. The nausea started early afternoon on Thursday and culminated with her throwing up on Saturday around noon. On Friday, she really started experiencing some serious bone pain, which in her words feels like lightening is shooting through her legs and back. It got to the point on Friday night that she had to resort to some medication to finally help her get to sleep. Megan is on so much medication that she doesn’t like taking things unless she absolutely has to, but when she turned to me at about 11:00 p.m. and said,
“Dad…everything hurts so bad.”
I knew it was time for her to take some medication and get some much needed rest. As a parent, I can’t explain how hard it is to see your child in so much pain and discomfort, but Deb and I do our best to follow Megan’s lead and stay strong. The nausea combined with all of the bone pain would have caused me to tap out long ago, but giving up is just not in Megan’s vocabulary. The tougher things get, it seems like the more mental and physical strength she finds. It’s really quite remarkable to witness.
On Monday, Megan was excited because she was feeling good and Makenna Emerson planned on accompanying she and Deb to proton radiation. They left a little early to stop and do some shopping where Megan and Kenna both bought Under Armour visors. Megan always has a great time with Makenna as she helps take her mind off of things whenever they are together. That night, they both took a swim and modeled their new visors 🙂
I’ve mentioned this before, but this is the best analogy I know of to explain what it must feel like to get a chemo treatment. It would be like having a plate of food put in front of you that you know is going to give you food poisoning, but you don’t have any choice but to eat it. Yet somehow, Megan still manages to show up at the CDH clinic every Tuesday with a smile on her face and the most positive attitude you could imagine.
She enjoys seeing all of the amazing medical professionals at the clinic, and she is constantly roaming from room to room to see if there are any other kids there that she could help. By the time she makes all of her rounds and talks to virtually everyone there, the four hours really don’t seem all that long to her. Immediately following her treatment, we headed to the proton radiation center, which is only about a 15 minute drive from CDH. After her proton radiation treatment, we were finally free to head back home.
On Wednesday, Megan still felt pretty good, so that evening she invited her friend Jaime Frazier and her baby Fitz over to the house to swim. Megan works with Jaime at the dance studio, and Megan adores both her and her baby boy. Fitz had a great time swimming, and having them over was another much-needed distraction for Megan.
Thursday and Friday are when the effects of her chemotherapy treatments really started to take a toll. Over the years, she has learned how to tolerate the constant nausea, but it was the bone pain that was really causing the majority of her discomfort. It got to the point on Friday where she was trying to sleep as much as possible because that was her only source of relief. On Saturday, the nausea got so severe that she threw up, but she really didn’t seem to mind that much because she was finally getting some relief from the bone pain. When you have We also had the Cougills come over for supper on Saturday, and Megan was disappointed that she wasn’t feeling better for their visit, but we still had fun. On Sunday morning, she finally woke up at 11:00 a.m. feeling much better, which we knew because she wanted to go out for breakfast. Heading to the Whistle Stop was her first time out of the house in three days! She also had been trying to plan an opportunity to hang out with her friend Caitlin, and after breakfast, she said she felt up to it. Although she was still really tired, I think she just needed to feel like she was doing something social.
A couple weeks ago, an organization that supports childhood cancer patients reached out to Megan and wanted to buy her a gift. Megan came up with the creative idea of a world map where she could place pins of the locations of her “Team Megan” supporters. She thought that whenever she was feeling a little down, she could look at the map in her room as a reminder of all of the people who are supporting her. She received her map and spent a couple days marking all of the spots where she knew her supporters were from. As she started to place pins on all of the locations, it was amazing to see all of the support she has received from not only the United States, but from across the world! It really seemed to lift her spirits to complete that map and get it hung in her room. She hung it in a spot that she can see when she sleeps on her left side, but can also see in a mirror if she sleep on her right side. We could never thank everyone enough for the love and support you have shown to Megan throughout her trying journey. Believe me when I tell you that I know she feels your kind thoughts and prayers for her.
Earlier this spring, Megan was honored to receive the American Red Cross Hero award for her work in raising money and awareness for childhood cancer. The people at the Red Cross in Chicago continue to be so kind and supportive of her as they recently sent her a care package with a gift card, but more importantly, she received a personal card from many of the people who work there. She had so much fun opening the cards and reading each personal note of inspiration. Thanks to everyone at the Chicagoland American Red Cross!!!
Although Kenzi is in Madison, WI for her summer school course and her two summer jobs within her speech pathology major, she and Megan still manage to talk via FaceTime everyday. Whenever Megan is having an especially rough time, Kenzi is still her go to for support. In three weeks, Kenzi is coming home for the weekend, and then she will be home for another couple weeks starting August 7, which I know Megan is excited about. Megan’s battle has been tough on Kenzi, but we are so proud of how she continues to persevere and find success as she prepares to make a life for herself after college. Although everyone would have understood, Kenzi has never used her sister’s illness as an excuse. Instead, I think the girls feed off of each other’s strength, which makes them both stronger and more determined than either would be alone.
This is a very big week for Megan as she has her first set of scans since she started this latest chemotherapy treatment. Although the primary tumor in her neck is smaller, there is still the anxiety of the unknown that comes with every set of scans. On Monday, she receives a CT scan at 8:20 a.m. and then has to hang out until her proton radiation treatment at 12:25 p.m. On Tuesday, she has to report for an MRI under anesthesia in the morning (the exact time TBD on Monday) followed by proton radiation at 3:55 p.m. We should receive the results of her scans on Wednesday, which will let us know if her current treatment plan will continue or need to be adjusted. We are hopeful that her body once again responds to the chemotherapy and the tumors that showed up on her last set of scans are gone. The busy schedule when she is already run down from chemotherapy along with the accompanying anxiety will make for a tough three days for Megan, but as always, she will find a way to power through it.
We hope everyone had a happy July 4th weekend, and as always, thank you for supporting Megan and our family. We are thinking positive and planning to celebrate when Megan gets good scan results this week. Until next week…