Apr 25, 2016 10:50pm (Sara)
This child. She never ceases to amaze me. 4 days into this cycle and aside from some puffy cheeks and thinning hair, you’d never guess she was going through chemo. Her three year old temperament has definitely returned and is as challenging as ever.
Scotty and I have been pleasantly surprised with Maya’s tolerance to the new infusions. It is definitely a little nerve wracking that we won’t see her labs for another week but…I hate to impose an arm pokey if we don’t have to. She has some bruising to her left shin but she has been quite rambunctious and her platelets were more than adequate at the last draw. Its a little hard not to freak out when I see those bruises…it’s just so nostalgic. I have frequently seen bruising on Lincoln and have to talk myself back from the edge of texting the pediatrician requesting a blood count draw for him. He’s a toddler. He’s a climber. He’s gonna bruise.
Some people, actually many, have asked if this is something we should worry about for Lincoln; is it hereditary? As of now, all research says no. From what the doctors tell us, there really is no “cause” of leukemia. It’s just a super crappy unfortunate shot in the dark that Maya’s white blood cells became leukemic. That being said, I have definitely googled “causes of leukemia” to find all sorts of information that just threatened a ton of mommy guilt. Did the salami that Maya loves once in a while do it? Was it the rare candy with yellow 5 or red 40? (Though my child has probably had way fewer of those items than most American children…and most American children do not have leukemia) Is it that I got an iPhone just before she was born? Was it the power box that lives 30 feet from our old house? Our water? The wifi? I use dish soap? Eff. All these (and oh so many more) can cause a mom to go nuts.
One anonymous person actually sent along some information on how the vaccinations that we protect our children with “cause cancer”. I want to believe that person was trying to share information and that it came from a good place…but reality is, it just seemed like they wanted us to know we might have given our child cancer. For the record – she hasn’t had a vaccine for a long time and the leukemia was likely weeks if a couple months along at the time we caught it. So, I hate to feel angry at people like that but it definitely doesn’t help me, my child, or our coping. And also for the record, I wouldn’t have done anything different.
Scott’s grandpa (Maya’s great-grandpa) that died after battling leukemia as an adult. Does that count as hereditary? Or just bad odds. From the current research, it seems like it isn’t hereditary and Lincoln, Scott, myself have the same risk and odds as anyone. It really is hard to not go deep down the road of how, why, what did this…but we can’t. We just can’t.
For now we will try to protect her. She has been more accepting of fruits and vegetables (so grateful!) and her appetite hasn’t seemed to drop too bad. I love that her face is coming back. It changed so fast that I don’t think anyone could be prepared for it.
As a dietitian, I have been concerned about not just her appetite but her vitamin and mineral intake. I started her on a multivitamin after discussing with the dietitian from Oakland. With Maya’s treatment, we have to be careful with some of the micronutrients we give her (specifically folate and iron). It’s nice to hear ideas from an RD that is around cancer kids all the time. Needless to say – Trader Joes’s rocks and they have exactly what we need.
I feel like we are in the eye of the storm. I will appreciate this and take full advantage of it. Thank you ALL for the love and support. I have a sneaking suspicion that if we didn’t have all the prayers, love, light, and support…it wouldn’t feel as smooth. Thank you for everything. Truly. Maya the dragon is thriving. She is fighting. She is not just surviving, she is dancing. She is prevailing. She is protected. She is loved. She is burning hot and ready for whatever this journey has to throw at her. Thank you for helping us get through this. Knowing we have an army behind us is the strength we need.
Love is life.