Jun 1, 2016 12:13am (Sara)
Sometimes things go so smoothly that the days just pass….and pretty soon we are getting the automated calls that Maya has another appointment on Thursday. Has it really been almost 10 days? Are we really due for chemo…again?? When I think back on wakeful nights and isolated weekends, I guess time doesn’t seem like it flies by. But then I realize that it’s going to be June tomorrow. I feel like I forgot to show up for Spring. Maybe I wasn’t invited.
Maya and Lincoln are really doing well. Maya continues to tolerate the escalating dose of methotrexate in addition to her vincristine well. She has complaints of “tingly toes” and she can point to the ones that bother her but it has not inhibited any walking…or tapping…or dancing.
Being isolated continues to be the worst part this phase. For her and for us. I feel so lucky to be able to go to work. I am surrounded by amazing people that support and care for me. I also get to work with families and feel like I make a difference in their worlds. I couldn’t ask for a better job. I know that some people have to completely stop working during this time. I don’t know what I would do without the vast support and amazing child care coverage options. Between Grandma Sandy, Bapa Lance,BaPa Pat, Aunt Katie and the wonderful visits from Grandma Bella…I can work and feel comfortable knowing the kids are safe and less available to catch a bug.
Maya can get pretty, what we call, stinky. This is her stubborn dragon that pushes and presses and tests and screams. She is able to enjoy independent play but she also requires a mass amount of attention. Something I very much appreciated from WNC’s amazing teachers. She misses other children and especially her friends. Lincoln and Maya are wonderful siblings and I’m so amazingly happy that they love each other…but…as Maya throws tantrums and fits when she doesn’t get her way, Lincoln will mimic. It’s quite frustrating and I’m tired.
People ask how I’m doing…a lot. I sort of laughed today because I answered “tired and cranky” but reality is…that’s not leukemia’s fault. I really try not to complain all that much especially since most parents of small children….well they probably don’t want to hear it. I know I’m preaching to the choir. There are nights that Maya is quite restless and her legs hurt or tingle. That is from the chemo. But all in all, we are surviving a threenager that also happens to be a dragon.
Parenting as hard. Especially if you want to be any good at it. I don’t know how my parents made it look so easy. Thank you Moma and Dad. You’re amazing. My uncle told me a while ago “you get to pay for your raisin’ when you’re raisin’ your own”. I think it’s his way of saying “karma is a B”. I’m sorry, I’m sorry, I’m sorry! I’m sorry for all my naughtiness as a child!!
It’s hard to think that a chemo kid could get spoiled but…it is a very fine line. One that Scott and I are learning to draw. It is a very different world and we feel the void from not having the teachers and other children from school help guide Maya to be the best little girl she can be. I cannot wait until she can play with children again. After delayed intensification, I am hopeful that we’ll have more good days and weeks. Until then…we protect her.
We are protecting our dragon. Her numbers have proven she is strong but the next several weeks are vital for her cure rate. If she cannot move forward for what ever reason, it likely changes the integrity of her treatment. I feel selfish keeping her to her den. But I cannot risk it yet. I’m not sure I will ever be one hundred percent comfortable with her out and about again…but one day I will have to at least find the nerve to try.
Love is Life.