My sweet Maddy. I can’t believe it has been three years since I have been able to hug you, to hear your voice, to share time with you. Though you are gone, you will never be forgotten. Today is a tough day for us. It is the anniversary of the day my little girl went to heaven. Maddy was a wonderful little girl and was starting to turn into a little lady. She was so smart, so kind and so funny. I sure miss her and our time together. Some of my most special memories of Maddy were the little things. When she was little she had her blanky and her thumb; armed with those two things she was pretty content. In the morning she would wander out of her room with her thumb in her mouth and her blanky nuzzled up to her face to come sit on my lap. The TV would immediately turn from SportCenter to Mickey Mouse Clubhouse. Those times of snuggling on the chair with her will live on in my mind forever. Maddy had a whit that was beyond her years. We would tease each other back and forth and her giggle when she got going was beyond joy. She was my little builder. She loved helping me with projects and fixing things. When we were living at the Ronald McDonald House in Washington DC getting treatment, we decided to build her cats a “cat house”. We got some wood, a small tool set, and paint. We went out to the picnic table and commenced working to build her cats a house. The time we spent planning and building are such a wonderful memory for me.
Unfortunately, we lost our little angel but she lives on through Mighty Maddy’s Mission. As someone whose experience with pediatric cancer prior to Maddy’s diagnosis was seeing St Jude’s commercials, it certainly came as a shock to my system as we started down her path with her. This journey turned every part of our lives upside down. It was chaos for all of us but it was most chaotic for Maddy and her sisters. There wasn’t consistency, there was a lot of time spent apart, and which many of those weeks were spent in the clinic or hospital. We were always on guard to try to keep Maddy healthy because her immune system was shot. This kept her from school, kept her and her sisters away from friends, and family at times as we quarantined. Maddy was a trooper but I would be lying if I said that those hospital stays happened with no tears or discomfort.
I don’t paint this picture and share all of this to focus on the sad and bad times or on the end of Maddy’s time here with us but to give a glimpse as to why I work so hard for this organization. Not just because Maddy was my daughter and part of creating this is to keep her name living on (which certainly is a small part of my reason) but more so I want to help make things better for children and families that are going through this. As I mentioned, when we got the news that Maddy had cancer, as a parent, I had no clue what I was in store for walking with my Mad-pie. I remember feeling so alone- I didn’t really know anyone who had walked this journey, at least not anyone really close to me. I didn’t have any idea what I was in for or how to navigate this new life. I was scared, uncomfortable and felt like as a family we were in upheaval. These are all feelings and realities that I don’t think there is anything that could completely take these feelings away but as an organization, one thing we hope to do with our new diagnosis baskets is to provide information and comfort items to families that recently received the news that their child has cancer. The hope is to let them know they are not alone and to give them ideas or resources for help. We want them to know that they are not alone, they are cared for, and we are here for them.
I remember watching Maddy’s hair start coming out in clumps and thinning out shortly after starting her chemo regiment. It was a tough thing to watch, not only physically but emotionally. She always had a long wild mane of hair. We tried to make it a fun time for her to get a short and cute haircut that lasted for a while but eventually she was balding so much that it was time to shave it all off. Our Maddy wasn’t thrilled but we tried to make it as happy a time as we could. Every person is different. Maddy never really had any qualms once she was bald about going out without a wig or a hat but this was still a real hurdle she went through at the time. Our hope with the No Hair Don’t Care celebrations is to offer an opportunity to flip the stigma of going bald, even in a small way. We hope to help the kids look at it as more of a celebration such as becoming a superhero who has accepted the challenge of taking on this terrible disease. Many hospitals already have a gift area where children who are in the hospital get to pick from if they are in patient but at Marshfield we worked hard to step it up with Maddy’s Toy Cart for kids and families going through treatment. The toy cart gets used anytime a child has to go inpatient at the hospital or they have a more invasive treatment. They are also able to pick a gift out of the toy cart when they are celebrating one of the celebrations we offer. I can remember how tough those hospital appointments and stays were with Maddy. They were boring for her and just not very much fun. Anytime Child Life would come by with an activity or a special little present she was always so excited and it helped her pass the time a little bit better and I am so thankful that we are able to offer this to the children to hopefully help put a smile on their face, even for just a little bit.
Celebrating the completion of a treatment plan is a huge deal, at least we believe it should be. We offer a party for kiddos who have completed their entire treatment plan. While many of these kids will see side effects, if not relapse down the road and the scare that comes to parents and kids leading up to each scan after treatments are completed are palpable, in the moment, in that time, when treatment is complete, there is no greater joy than knowing that they have achieved their goal. For that, no celebration is too big. I am just happy that we are able to offer some help in that celebration.
As our organization moves forward, we continue to look for new partnerships with additional hospitals as well as find new offerings to help create a positive impact in the lives of kids and families affected by pediatric cancer. I would give anything to have a magic wand to waive and suddenly have the cure for cancer but since I can’t, I am so proud to be part of this great organization and the work we do. While I would be lying if I said that no part of me also selfishly loves having my sweet, thoughtful daughter’s name attached, what really makes me continue to work hard for this organization are all the smiles we are able to help provide.
-Published by Josh Odegard