A memory from a year ago. November 30, 2016
Let me tell you something about being a parent. It’s a minefield. Only you’re not the one walking in it, your child is. You’re just standing there on the sidelines telling them where to step, to hopefully avoid a disaster. Often with nothing more than a best guess. ~Code Black
Watching your child walk through a Minefield, I would say that is a good description of what it is like to be a parent. I think we are definitely standing on the sidelines hoping that the choices we make for our children when they can’t make their own or the guidance we give our children when they can make their own decisions, are the right ones. The ones that will lead them to a good life, a safe life, a happy life.
Sometimes the choices and guidance we have to give our children, is not the type that the average parent has to give. Some of us unfortunately are faced with helping our child not only through the minefields of life but the Battles that are way beyond the normal struggles all of us face in life. Cancer, childhood cancer to be specific, is one of those battles. And it SUCKS! It FREAKING SUCKS watching your child face this monster, knowing that they only thing you can do is stand back, be supportive and positive and watch them fight for their life. You stand on the Sidelines hoping and praying and begging God to please keep them safe, please don’t let them suffer. And that is all you can do.
15 ½ years. 15 ½ years of being Brave, Being Strong, Never Complaining, 15 ½ years of watching all the kids she grew up with doing normal kid things. Watching them go off to college, graduating from college, hanging with their friends, posting on facebook all the fun and exciting things happening in their life. While she lives her life in a bubble, fighting for her life. But she doesn’t sit around feeling sorry for herself. Instead, she spends her time fighting for a cure for other kids, making a difference in the lives of other kids facing this monster and those that will face it in the future. This kid never gets a break and has the most amazing attitude.
Dr. McNeer called me a couple hours ago with the bone marrow biopsy results. The results were not what we wanted to hear. This last round of chemo did nothing. In fact the amount of cancer in her bone marrow has increased. Dr. McNeer said that she doesn’t think it is beneficial to Ashley to do another round of this chemo. The last round of chemo was very hard on Ashley. So doing another round of that chemo would be even harder on her body. That chemo or an even stronger chemo can be deadly for Ashley. Especially with the affect it has on her heart.
Ashley’s AML has a P53 Mutation which makes it highly resistant to many Chemo’s. But we are not giving up hope.
Monday we go back to the hospital for her to go inpatient. She will start day 1 of 10 days of a chemo called decitabine. She has had that in the past. But for 5 days. They have seen some results in patients with this P53 Mutation when used for 10 days. They will then plan to give Ashley more of Jake’s Cells. They are looking at doing the cells on the 19th of December.
We asked Ash how she was feeling. She said fine. I told her it is ok to be angry, it is ok to cry. She said, “Yeah, this sucks and this is not where I expected to be in my life, but it is what it is and anger and tears are not going to change anything.” Then at dinner she said, “You know what sucks the most about this, is the fact that the hospital food sucks, so what the hell am I going eat.” Guess Dad will have to continue to bring something like he has been.
I am in Awe of my daughter. I cannot believe that God blessed me with such an amazing young lady and her amazing brothers as well.
Please continue to pray for our girl. I am going to be posting a link soon for everyone to purchase a shirt to support Ashley. Please continue to support childhood cancer research. They are a long way off from having a cure for the many forms of childhood cancer. But every day they are learning new things and finding better and safer treatments. Treatments that won’t cure your child of one cancer only to give her another more deadly cancer.
A BIG THANK YOU to everyone who has donated to help us get some needed medical devices for the house and to try and make the house more accessible and safe for Ashley. You have no idea how much it means to us!
Stay Strong, Think Positive and Keep the Faith!
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