To help bring even more awareness to childhood cancer this September, we at The Gold Hope Project decided to give a platform to all the childhood cancer heroes. Their story in their words.
Diagnosis and Prognosis – Acute Lymphoblastic Leukemia (B-Cell)
How did you discover they had cancer? Over the course of Paige’s 3rd grade school year, she was sick more often than she had ever been before. Multiple days of school were missed due to random fevers that would last for days at a time. Time after time, we were told that it was just a virus and it had to run it’s course. As the 4th marking period was beginning, we noticed that Paige was tired more than usual…and starting to look very pale. Though she continued to act like her normal self, something just seemed off. On a Wednesday morning, the call came in from the school nurse that Paige was running yet another fever. Knowing that something wasn’t right, a sick visit was made at her pediatrician’s office immediately. The doctor’s took one look at her pale face and ordered a blood test. We went to the lab the very next morning, and by 10am Friday, we got the call. Paige was diagnosed with Leukemia.
What was your perception of childhood cancer before your child’s diagnosis? It was one of those, “it won’t ever happen to you” kind of things. Yes, I knew childhood cancer was a very real thing. But it had never hit so close to home. I had no idea what any of the medical terms that were being tossed my way meant. I didn’t know what blood counts were. I was in for a crash course.
What kinds of treatments and procedures has your child been through? Are there any struggles your family faces because of treatment? Since April when she was diagnosed, Paige has received numerous chemotherapy treatments. She is currently in her 3rd phase of treatment, Interim Maintenance. With these treatments, she has to be an inpatient each time, as the medicine is such a high dose. She has had many lumbar punctures and bone marrow aspirations, needle pokes, labs drawn, and blood transfusions. She has had a PICC line placed and removed…and a port surgically placed for her to receive all her transfusions and treatments. She has spent over two months in the hospital since mid April. One month for her induction phase of treatment and an additional four weeks as she caught a cold that progressed into pneumonia.
It’s not easy. My husband and I have four children between the two of us, and both of us work full time jobs on top of running a photography business. Paige’s father is around to help when needed and he attends all clinic visits, which helps add to Paige’s support system. But being the primary providers and well, Mom…having to leave to go to work is very difficult. I now know what it means to really want to be in two places at once. It hurt me that any of my children might feel slighted at any time, while trying to care for Paige and still be home and Mom to the others.
What did you learn about childhood cancer after your child was diagnosed? Was there anything that shocked you about the disease? More than I ever wanted to know. Not even just because of Paige, but because when you’re in the hospital for that long you meet other cancer parents. You automatically think that your child has it so bad, but then you hear of others who are so much worse off. Who don’t have a 90% chance of recovery, who are battling everyday to take one more breath. You really learn just how REAL cancer is, how ugly…and how it discriminates against no one.
If there was one thing you wish people could do to help a family with a child battling cancer, what would that be? Allow them time. Time to be together, stress free. To enjoy every second that they have to the fullest, because nothing is promised. And memories and captured moments that would last a lifetime. I am a photographer, it’s what I do for people already. I never really realized just HOW important every single capture is, smiles and frowns. All of it. Life.
What do you think about The Gold Hope Project’s mission to bring awareness to childhood cancer through photography? I think it’s wonderful. I know that I torture Paige even more now than I did when she was healthy (and that was a LOT). I make all of my children take photos more often. I want those memories for myself, but the photos of Paige…I want those for her to look back on when she’s 22 and see just how strong and brave she really is. To help show her that she can do absolutely ANYTHING she puts her mind to.
I also love sharing with other people, her strength…the fact that no matter what, she still smiling. She is an inspiration to so many others right now and I can’t wait for her to be old enough to understand just want that means.
Thank you so much Tammy for sharing Paige’s story. Keep up with Paige here.
Ready to do more? How about joining the #randomactofhope movement?