(This is Elayna the week of her initial diagnosis. She was just five years old.)

Over the course of the last few months (since relapse), I have had people ask me how we keep from getting angry about all of this. We keep our posts online fairly positive because that is our overall approach to life and to the fight that our family is going through. We want to be optimistic about the outcome, and for Elayna to feel like she is going to beat this, but I feel like it’s only fair to admit that we do get angry.

In fact, if I’m being honest, I have a fury burning just beneath the surface that I had no idea was humanly possible.

I am irate that this happened to my child… and I am frustrated to no end that it happened again.

I am so bitter that we celebrated and reveled in remission and then I had to tell my best girl that we would have to live this nightmare once more, and it would be so much worse.

I am provoked when I am adding beads onto her Beads for Bravery string and realize that we have already “earned” more this time around than we had in the previous year and a half since her original diagnosis (234 since relapse). Each of those represents something that was done to my child. Each an experience that I could not keep her safe from. Each something I wish more than anything I could have had done to my body instead of hers.

Do you know what makes me ferociously enraged though?? SO angry that I want to Break.All.The.Things???

We could stop this and are choosing not to. I mean the collective us. Sad to say, that included me before diagnosis and it may include most of you. It includes our government (in a big way) and our politicians.

WE have a CHOICE and we do not choose pediatric cancer research. We are not choosing our kids.

…. I’ve been fuming over something since relapse. I am a researcher by heart and, as I did the first time Elayna was diagnosed, I read and read and read about our (now re-) diagnosis and what the options were. I hunted for studies that had been published and ones that had not. I joined yet more boards for parents of children with Wilms and hunted for parents like us, who were watching their children fight again. It wasn’t hard to find them… I found that many children relapse. I waited for the treatment path to become clear.

It did not become clear.

Directly because of the lack of funding for pediatric cancer research, we do not have any clear answers.

You see, no studies were done on children exactly like mine (all of the subgroups are different depending on original diagnosis and treatment, and relapse scenario) so we are continually forced to pick and choose what treatment to use, not knowing which would actually be most effective.

Not sure what a difference funding can really make? When reading I came across this sentence in a publication from the Journal of Clinical Oncology (from just this last September) that admitted that, “a prospective clinical trial to randomly assign patients to receive or not receive HDSCT [High Dose Stem Cell Transplant] was proposed almost a decade ago, but the study was disapproved by regulatory and funding agencies because of concerns about a protracted study period (8 years) and scarcity of funding.” This study would have told us if we need to do the intensive and potentially toxic (and I mean truly toxic) procedure that we are about to subject Elayna to.

That’s right. We aren’t 100% sure that we need to do it. We have to take a calculated risk. Is it more likely that she can survive stem cell transplant and remain cancer free, than that she could survive without it? We think maybe. MAYBE. Would you want to make that kind of decision on a maybe?

That study would have been completed at least a couple years ago, but lack of funding stopped it. Pediatric cancer researchers have to pick and choose what trials and studies to participate in because there is not enough money. The science and the scientists and doctors are ready. They could tell us the best way to save our children if we would make it a priority. The children are waiting.

The opening weekend of Star Wars grossed over 2.5 times the yearly national budget for pediatric cancer research. Couldn’t we all afford to also donate that much money to pediatric cancer research?? Is a trip to the movies more important that your child’s life? Than my child’s life? No one would say yes, and yet…

It honestly makes me feel sick. Sometimes it makes me so absolutely furious that I want to shake everyone I see to wake them up.

When we spent the month of September fluttering (raising funds and awareness for pediatric cancer research – not knowing we were about to become a poster family for why funding is so absolutely needed right now) Elayna would always get so happy when we got another donation. Do you know why? She would say “Mommy! These people know now about kids having cancer and they are giving money so that we can CURE kids of cancer! Then kids wont have to have cancer anymore!” It was so simple to her. What’s crazy is that it really could be that simple.

My own guilt over my inaction is so immense that it could fill a room. I didn’t do much for pediatric cancer research before it was my child’s life that we were fighting for. Please don’t let that be you. Don’t wait until it’s your child. Decide what you value and make it a priority.

… Take a look at your child before you decide.

For more information about how you can fund-raise, or to donate to fund pediatric cancer research, please check out UnravelPediatricCancer.org.