I’ve always thought that the best thing about time is that it keeps going. There is a constant flow of change. If something terrible is happening, you can be sure that in an hour, or a week, or a few years, you will find yourself in completely different circumstances. Not always better, but different. And different at least, allows for the hope for better. 

Ten years ago, in June 2012, Helena was diagnosed with cancer. Ten years later, she is a senior in high school looking at colleges and making plans for the future. 

Yesterday, Helena had her annual visit to the CHOP survivorship clinic. She will be monitored by CHOP until she is 25 years old. At that point, she will transfer to the adult clinic. It’s easy to think that once a person finishes chemo/radiation/treatment, they are done with cancer. Unfortunately, that’s not the case. The treatments that work to kill cancer cells often have harsh side effects that may manifest at a much later date. 

At this latest visit, the doctors looked at Helena’s kidney function, heart function, and did bloodwork. Because she only has one kidney, it is very important that the kidney is working well. As of right now, there is only the very slightest indication that her kidney is just a bit out of normal range. Many things can affect GFR, so the nephrologist wants extra bloodwork done in 6 months. The main takeaway is that Helena needs to work on her level of hydration. The battle to drink more than 60 oz. of water every day is real! She also had an echocardiogram and EKG. Both looked perfectly normal. 

There have been many times over the years that we ask Helena how much she remembers about her treatment, or the days leading up to her diagnosis. I asked her again yesterday, and she mentioned the trip to Albuquerque where she was initially diagnosed. She talked about how when I strapped her into the car and the seatbelt hit her shoulder it hurt so much, but she doesn’t remember complaining about her side/back hurting when she laid down at night and she doesn’t remember throwing up outside the car. We talked about her shoe size, and my worries back when she was 6 years old that her feet seemed to stay the same size for such a long time. I was so concerned back then, and I still wonder if her stable foot size was perhaps related to the tumor growing inside her. Could her body have been investing all its resources in fighting those cancer cells? I don't know. 

No matter how healthy she looks on the outside, I still spend time now wondering what’s happening on the inside. That’s why we think it’s incredibly important to acknowledge how far cancer treatment has come and how much it can still be improved. 

September has been known as childhood cancer awareness month for 10 years. This year, in honor of her own story, Helena is raising money to support cancer research. (LINK to Helena's CureSearch walk) As Helena’s doctor mentioned yesterday, the treatment for Wilms has not changed since she received it in 2012-13, which means the children undergoing treatment for Wilms right now will face the same possible late effects that Helena faces: kidney failure, bowel obstruction, heart problems, lung problems, skeletal abnormalities, secondary cancers, pregnancy concerns, fertility concerns, and/or dental problems. We are very hopeful that she has none of these issues, but because they are a possibility, she will continue to be monitored for her entire life.  Even if she is lucky enough to not face any of these problems, there are children who do face them, which is why funding research is so very important. 

Some positive news regarding the benefits of medical research.  Yesterday, I received an email from St. Baldrick’s that told a story about a boy with neuroblastoma. He was diagnosed in 2004, when the cure rate was 15%. Today, the cure rate is 60%. That’s amazing progress! We continue to be hopeful that research will improve the cure rates for ALL types of cancer in children and adults. 

Thank you to everyone who has supported us and continues to support Helena and our family. It means the world to us!