“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.” -Shel Silverstein
You guys have seen me post that quote before. This quote reminds me indefinitely of my children, but particularly my son Logan. You probably noticed the heading of this post too. PLEASE DO NOT STOP READING. I have debated for several weeks about posting this post. About getting gut wrenching honest and about letting myself feel ‘those’ feelings again. Let me start by saying this time period was one of the scariest times of my life. It felt utterly defeating and left my heartbroken. I should also add, that I am fortunate. WE are fortunate. Logan DOES NOT have cancer. Though for several weeks the doctors thought he did. Just as I’m typing that I can feel those same emotions coming over me again. Several months ago, Logan was scheduled for his surgery for his Cerebral Palsy, on his right leg. This was to be his first major surgery related to Cerebral Palsy. And… it was cancelled. Then it was cancelled again. Then the third time it was cancelled, I’d noticed Logan had a very high fever. AGAIN. Logan had been having these weird high fevers, with NO other symptoms. { No big deal right? } Until the doctor noticed because his surgeries had to be cancelled so many times. SO. The third time we were off to the doctors. At this time the doctor also noticed a very large lymph node on Logan’s neck and that apparently Logan had, had random fevers since last year. I should add, that this particular day was a LONG day, the car heat had broken and it was only 10 degrees outside, we had school, surgery postponed again, a middle daughter who was super patient, an infant, Logan and then I had to go to Springfield for the Heat to be fixed in our new car. A fever, to me didn’t seem such a big deal. Welp. It was. I should also add, that I had/have recently been surrounded by mamas and their babies being diagnosed with cancer within a year. 10 to be exact. YES, you read that right. 10. Since that time I’ve met two other mamas in the area who’s hearts are having to bear this deep, deep sadness and fear. At the doctors office, I immediately noticed that the doctor was a bit more concerned then what I would’ve expected. She said she wanted blood work. But then she said, { almost in a monotone voice } “He doesn’t have strep, the flu, ear infection and has no other symptoms. My concerns are that he could have Meningitis, TB or Leukemia.” I had to process what she said for a second and then followed it up with, “Excuse me, what? Did you say Leukemia?” She said well, let’s do the blood work and see what comes back. Obviously, I knew he didn’t have TB or Meningitis and was praying to God he did not have Leukemia. Fast forward past his first blood draw. His numbers we CRAZY. By Crazy, I mean most of his numbers presented how Leukemia would present. But our doctor didn’t run a blood smear and few other tests that would be a bit better, ALSO she wanted to wait a few days and do a basic panel again. I was dumbfounded. A few days?! She wanted to wait a few days?! There is NO urgency about childhood cancer. There is ZERO pushing for things, unless the parents are doing so. Are you surprised to hear this? Surprised to hear that someone wouldn’t treat this as what is, REALLY URGENT? I was too. I was shocked. I was terrified. Thank GOD, I had other mama’s going through this and not, one in particular who listened to my crazy and helped me know what to push for. But therein lies the problem too. My son has Cerebral Palsy, Epilepsy, Autism and had several strokes in utero and then you think he has cancer and I have to fight tooth and nail for fast results and some urgency. Long story short Logan had blood draws daily for some time and other testing and it was determined that Logan does not have cancer at this time. And hopefully never will. We have been told to follow up with blood draws and obviously if anything happens with fevers and such or anything unexplained to go to the hospital immediately. Logan had his surgery and they kept him on the oncology/hematology unit in children’s after and his numbers were OK after surgery. I share this story with you all because while Logan does not have cancer, this experience changed my life. Truly, it changed my life. I will NEVER be able to not think about childhood cancer and I don’t even know what that feels like truly. I know what it feels like to think that your child does for months. I know what it’s like to hear a doctor tell you, oh, just wait it out a few days. I know what it’s like to look my son in the eye and to think something is killing him. I also know statistics. I know numbers that are so absurd and sad. I know that the government, national cancer institute only gives 4% of funds to ALL pediatric cancer research. I know that kids, KIDS, are dying from cancer. Pediatric cancer is NOT as rare as you think, it does not exclude anyone, no one is exempt. I know that parents and people are so scared to even talk about pediatric cancer, because honestly who wants to think of something so sad? Noone. Noone wants to think of it or raise awareness and because of that, nothing is changing. People need to spread awareness. YOU NEED to know these facts. You need to know that Childhood cancer is the number one disease that kills our children. YOU NEED to know that this is happening, not in far off places either. Just here in Northern Virginia, there are SO many families going through this heart wrenching fight. A friend of mine, who may never know how much she truly helped me during this time with my son, who’s son is fighting cancer recently posted this. “You may not be a cancer parent, so spreading awareness is not a priority, but the day before my child’s diagnosis, I wasn’t a cancer parent either.” This. This is so true. Again, while I can’t even imagine what these families go through with this diagnosis, I do know that my own brush with this with my son has forever changed me. I will never ‘just keep scrolling’ past a post anymore. I will help spread awareness and do all that I can for Pediatric Cancer Awareness. I will help these families in any way I can. NO child, or family, should have to go through this. Please, read this. Please, share this. Please, don’t turn away from these post. This is happening. Hop on over to The Truth 365 on Facebook. It’s gut wrenchingly honest. These kids, our kids, our community, deserve #morethan4.
This month I will be offering free family sessions to ALL families fighting this battle. Capturing their children and their families and telling their stories, should not be something that they have to worrying about finding additional funds for. <3.
