April, 2020
October, 2021
“Max is trach/ventilator dependent and has a rare genetic disorder which is a result of the malformation of the PIK3CA gene. Due to his extensive medical conditions, it’s been a scary time trying to decipher the misinformation and cope w/ the unknowns. His nurse Amber answers my endless questions and helps us take the proper steps to make sure that Max is safe and still progressing. She doesn’t just work here, she’s part of our family.” - Rachel, 05/01/2020.
Oct., 2021: Amber has worked with Max for 3yrs.
While Rachel has been tending to Max and Beau’s needs, she had some setbacks of her own health.
She shared: “A random serendipitous story."
“Long ago, I saw a commercial for a drug that treats a specific kind of cancer that results from a PIK3CA gene malformation. Amber + I discussed how weird it was that the two were connected.
6 months go by. I find a lump in my breast. I go to the doctor and he says he thinks it’s nothing. I express my concern because of the gene connection; he ordered the testing immediately.
We were able to catch the cancer very early. Stage 1, grade 1. By the time I had surgery a month later, it had already spread to my lymph nodes. Waiting 2 months would have drastically changed my diagnosis + treatment plan.
After years of doing everything I can to save Max’s life, he potentially returned the favor.”
Rachel’s follow up imaging came back clear! Recovery hasn’t stopped her from going to Beau’s baseball games, assessing Max’s medical needs, and trying to stay on top of a never ending to-do list.
“Andy, my fiancé, and I work well together to get everything done, but it’s tough sometimes because I just want a break.
We were hoping to get Max’s trach out, but it wasn’t in the cards. He’s working on standing, learning new signs, is in preschool doing therapies and improving weekly.
I’m constantly looking at everything we’re doing now + how we could be doing it better. I rarely take the time to admire how far he’s come. This was an excellent reminder to take a minute to pat ourselves on the back for not only surviving this last year and a half, but coming out the other side better.”
