May 13, 2016 1:38am (Sara)
When I was a child we had a tree house. It wasn’t really in a tree but there was a tree within reach. My grandfather helped my dad start this two story tree house (maybe it was more of a tree adjacent fort) before he got sick. He ultimately lost a battle to cancer and the tree fort stood as it was. We loved it. One day in this tree fort my big brother grabbed a branch and swung like Tarzan. I couldn’t believe it and it was awesome. It was so awesome until the branch snapped just as he was in the up swing. He came crashing down and landed flat onto his back from what seemed like 2 stories. I frantically climbed down the ladder to his side. Shaun couldn’t breathe. Shaun! Breathe! Just breathe! Shaun just take a breath! He was gasping for air that he couldn’t reach. There was nothing I knew to do so I screamed for my mom. I screamed while I watched my brother gasp. He ultimately caught up to his breath and was fine after a while but I’ll never forget his look of fear. I will never forget my fear struck feeling of helplessness.
Three months ago today we were floored. We got a hit so hard that the wind was knocked out of our lungs. It was a hit that I thought would fundamentally change my family forever. It was something that I knew so little about that I didn’t know we’d ever smile, laugh, or even grow as a family again. Yet…after the biggest blindside blow of my life, after a fall from two stories and landing on my back not able to catch my breath, here we are. 3 months later and I can say: today was a good day.
Maya had round 3 of 5 double chemo infusions today. Until approximately 2 pm today i had absolutely NO idea what her blood would tell us. This fluctuating of ANC is seriously stressful…to the annoying point! The virus that Maya (as well as most of the county from what I hear) is fighting in conjunction with chemo depleted her immunity. She still has a bit of a runny nose but for the most part she is doing great.
Grandma Bella (my Moma) came with us today. Maya was able to introduce her Grandma to her new friends at the clinic. It is truly amazing that she loves going there so much. I know I shouldn’t be surprised since she is such a social butterfly and has this natural affinity to entertain, interact with, and enjoy humanity. But she constantly surprises me. It’s part of her that reminds me of me and I ache to think of how I’d feel being so isolated for so much time. We had labs drawn and then we got to go eat lunch.
Fantastic news! ANC 1450. We were able to move up to the escalated dose of methotrexate in addition to the vincristine. That sounds so weird to be “stoked” for chemo but…well 50 years of research and a 90 % cure rate isn’t something we’d like to mess with. The doctor says “she looks great”…and I would agree.
She is back down to just over 36lbs (at diagnosis she was 31 and gained 11lbs in 3 weeks!) and her cheeks are definitely looking more like herself. Her belly looks great too…maybe just slightly like a person who gained 30% of their body weight in 3 weeks then lost it very quickly. Her appetite is definitely back to normal and I have to remind myself that toddlers and preschoolers have really frustrating appetites sometimes! The mommy in me gets nervous when she doesn’t eat much but the dietitian in me has to just watch the trends of her eating habits. So far she is fine.
Today was a long day but it ended well. She fell asleep in the car on our way home for a very late nap. We ate tacos with out her but she woke up to play and eat later. We snuggled on the couch and laughed. We watched videos of us in Hawaii on Grandma Bella’s phone and talked with Siri the iPhone. At 8:30pm we asked “Siri, is it bedtime?” Siri replied “that is a very interesting question, Margaret.” Maya was silent for a solid 15 seconds at which point she said “weeeeellll….I guess this is Margaret’s phone.” ha! Yes child. It Is Margaret’s phone (aka Grandma Bella). And it is time for bed. Nevertheless, the humor, intelligence, and deductive reasoning this child holds is incredible. I laughed so hard.
Lincoln is good too. I don’t write much about him not because he isn’t a very big part of this journey but most of the people following my little family ask for communication about Maya. Lincoln is amazingly funny. His sense of humor is vast even with his limited words. He is such a strong yet gentle giant for Maya to lean on when she has fears or frustrations. They are both so isolated and while he does not have to endure the pain and fear of accessing Buddha buttons, arm pokeys, strange doctors, and side effects of chemo…he is very much a victim of cancer and its fall out. He is missing out on many experiences that he would typically have. I can’t wait to setup a play set since I know he’ll love the swings. He’d steal hearts in the Bumbles room with Miss Sally but I doubt that will happen. He has one friend so far – Liam – and has been isolated even from him for a time. All this yet, flying right along Maya the Dragon is my handsome, strong, leading dragon Lincoln. He lights the way for us all especially when Maya may be flying slower. He does wonders for all of our souls and I am so grateful for him (even if he has some pretty shitty sleep habits).
This family is good. We are all good. Scott is working hard and balancing more than I can even fathom…yet somehow making it look easy. I am grateful for my mom being her and helping so much. It is nice to have so much support.
Tomorrow Lincoln has his 15 month wellness check with Dr. Papez. It was at his 12 month that we hijacked his appointment with our concerns for Maya’s health. I haven’t see Dr. P since and while we aren’t really at the “hugging” level of friendship… I really look forward to giving her a big hug to say thank you.
Love is life.