The Guishard Gang has had a busy month. Kev was hard at work on some projects with his team and preparing to a make a move close to home. I’ve been teaching summer school and doing some work with the teacher’s union. Ava has been taking health and Spanish classes. Kohen took four summer school classes offered by his new middle school and finished on Friday. Ellie also took some summer school classes and went back to gymnastics. She is so happy to be back in the gym. We are so happy she has somewhere safe to go during this pandemic. In addition the kids decided to open their own business and have been baking cookies to sell to the neighbors and friends.
In someways it’s felt normal. We’ve been flying high on the the news that Ava’s leukemia was gone and trying our best to focus on living life like we use to. But the truth is childhood cancer doesn’t work that way. I’ve come to realize it’s not something you can leave behind, ever. Over the last month two of Ava’s Hopkins peers have passed away. Since the last post the world lost Mo Gaba. Ava and Kev got to know Mo when they would to to clinic weekly. His passing and Ailani’s relapse have hit us hard. We’ve realized the fear of relapse is real.
As most of you know Ava is a badass who rarely breaks down. She’s always trying to take care of us. She is rarely vulnerable or shares her feelings because she hates to worry me. However, last night she had a sinus headache or a migraine and she finally let me into her thoughts and fears. She’s not oblivious, she knows the cancer could come back. She’s seeing it happen to her dear friends. She is carrying the guilt of feeling good and the fear that any ache or pain is leukemia. She carries this at the tender age of 15. I don’t know how she does it because I’m carrying the same fears at 41 and lately it feels like I’m drowning. Holding her last night I wanted so badly to tell her she didn’t need to be afraid, that the leukemia was gone for good. But I couldn’t. All I could do was assure her that no matter what she would have us by her side. I reminded her that prayer was always there and she should hold onto her faith when she is most scared. I reminded her that we’re all basically living on a prayer and God always hears our prayers.
On Tuesday she has her monthly clinic appointment for IVIg. I think they will also check to see if her B cells are still gone. As usual we ask for your prayers and healthy vibes. We want those CAR-T cells to still be doing their job and that the IVIg doesn’t cause her the headaches she’s been having after them.
Here are some links I’d like to share. Through these links you’ll have the opportunity to hear from sweet, Mo. Learn how you can be the hero Ailani needs. You’ll also have the opportunity to donate to Ava mile on the Moab 240 that Stillbrave’s Tattoo Tom is doing this fall. In addition the kids are donating 1/2 the proceeds from their August cookie sales to pediatric cancer. So if you want to order some yummy chocolate chip cookies and help in the childhood cancer fight let us know.