I recently shared that Jaron was diagnosed with Li-Fraumeni Syndrome. This is a genetic condition that makes you predisposed to developing cancer. With his positive diagnosis, the next step was to have our children tested. So one morning we took all three children to the office and had them fill up vials of spit. The kids were grateful it wasn’t blood that they had to give. We were told that the chances of one of our children having the condition was 50%. We were hoping that all of the children were negative, but knew in reality that one might come back positive. My new motto is to not worry about something until I know to worry about it. So for the next few weeks I tried to keep our minds off of the test, hoping there would be nothing to worry about. We got a call one afternoon with the test results. Jaron and I went up to our room and put the genetic counselor on speaker phone. We were shocked when we heard her say, “All 3 of your children tested positive for having Li-Fraumeni Syndrome.” Jaron just crashed to the floor and didn’t say anything. I was surprised that I was ok with the news. I carried on the rest of the phone conversation, thinking, “Wow, I am handling this great!” But as soon as I said goodbye, the tears and sorrow came. All 3 of my children have it! We were devastated. With this condition, the odds are almost 100 % that they will have cancer in their lifetime. We don’t know what kind or when, but it will happen. My sweet children that I love now have to feel like ticking time bombs for cancer. This was almost too much! We decided to not tell the kids until we were ok with the news. The kids really pick up on our feelings and we wanted to be calm about it so they would feel calm too. The next day we went and had a family outing, sharing the news with them on the way. It was a lot for them to process and they are still trying to come to terms with it, but they are brave children. They have amazed me with the strength they have shown over this last year. I am blessed to be their mother.
So what does this diagnosis mean for them? They are now under the care of a doctor at Huntsman that is watching for cancer. Yearly they will do scans of their whole body. I have to be on the alert for signs of possible cancer. But other than that, they hopefully can live a normal and happy life. Maybe cancer won’t come for many years and by then, they will have a cure. This is my hope for them. We debated on sharing this news with the world. At first, I wanted to tell nobody. I wanted my children to have a normal life. As a mother, I feared this diagnosis would prevent them from some experiences in life. I feared they would be treated differently. But as time has gone on, I realized that we need the prayers and support of all of you around us. This is too big of news to keep to ourselves. We hope that this news will bring my children more love and support, not less. And hopefully they can still have a normal life, filled with love and happiness.
I posted a few weeks ago about an awesome program that the company Jaron works for has joined. It is called 5 for the Fight. It is set up so that companies can have their employees give $5 from each paycheck towards cancer research. I am so grateful for Sure Steel for supporting this. I was so touched by the video made, recruiting their employees and other companies to join in the fight. If you haven’t seen the video, here is the link. Jaron is one of the people featured in the video. Go Jaron!! 5 For the Fight
The company that started this program is Qualtrics, based out of Provo. Because Jaron was featured in the video, Qualtrics invited us to come hear a presentation that would be given to their employees. The employees wanted to learn about the research that they were raising money for. So last Wednesday Jaron and I drove down to Provo. My cousin Emily’s husband Johnny works their and was able to be our host for the event. That place is cool! The front foyer is a basketball court. It was a hip place and I felt smarter just being there! The event was a presentation by Dr. Schiffman and Dr. Schroder, talking about their research into a cure for cancer. When we got there, the event was about to get started. They had some salads for us, so we quickly sat down to eat. The two presenters sat with us and we made small chat. After hearing the presentation, I realized that I ate lunch with men that could win a Nobel Prize and cure cancer and all I did was small talk. I should have at least asked for an autograph. Maybe it was good I didn’t know who I was eating with or I might have been star struck. But boy, these men are amazing.
Here is the short story of what they shared.
A few years ago, Dr. Schiffman learned that elephants rarely get cancer. This was interesting because elephants are so big, they should get cancer more than us, not less. So Dr. Schiffman researched why and discovered that elephants have 40 genes that prevent cancer. Humans have only two, (Jaron and my kids only have one.) With this discovery, he needed to find a way to get the cancer fighting protein made by the elephants genes into the human body. Thats when he met Dr. Avi Schroder from Israel. Dr. Schroder was working with nano particles. He described these nano particles like tennis balls, hollow in the middle, but so so small, smaller than the cells in the body. They can put medicine inside these particles and then the particles can move through the body to deliver treatments to the source of the problem. These two men met at a conference and have put their discoveries together. They put the elephant protein inside these nano particles and it goes in the body and finds the cancer. One reason cancer is so bad is because it hides from the body. The body doesn’t realize it is there and doesn’t destroy it. This elephant protein helps signal to the body that cancer is there and needs to be destroyed. The body can then kill the cancer cells instead of feeding them. This treatment has been so successful in the lab. They are a few years away from human trials but this really could be a cure for cancer.
I was so inspired hearing these two men. I laughed. I cheered. I cried. For the first time in months, I felt hope! I now have hope that my family might not have to suffer and die from cancer. This could be the cure. I was so uplifted by this information. It was such a good day and I have been so excited to hear what this research is doing. I am so grateful to Qualtrics and Sure Steel for raising money for Dr. Schiffman and Dr. Schroder’s research. I have such high hopes that this will be the cure.
Because my hopes are now with these doctors and their elephant discovery, elephants are my new favorite animal. Yesterday for my birthday I got some cute elephant-themed presents. I have always thought elephants are amazing animals but now they are my mascot, my hope…my hope that my children won’t have to suffer the pains of cancer. After watching Jaron this last year, I hate cancer. I hope someday, others can be freed from this pain. I wouldn’t wish cancer on anybody!
So, how are we doing? We are moving forward, hoping someday for a cure. We are learning to cherish the today because life is not guaranteed. We want to live and love and enjoy life while we can. And I think this is a good way to live each day. So in a way, cancer has been a good teacher for us. But I am ready for recess now!
