Mar 22, 2016 11:19pm (Sara)
I discussed with a friend today how sometimes we hold on tight to our emotions and let them be our own burden to bare. We often do not want to “worry” others or might feel like a martyr if we were to complain too much. Then there is this other phenomena of holding our words when things are actually going really well. It’s like the bad sometimes has a louder voice. I want to apologize for instigating so many tears. It is has never been my goal to write a heart wrenching entry….but thank you for your support and for listening. Being able to write some of this journey down and know that it falls on loving and empathetic ears truly does relieve some of the burden. I also want to apologize for not updating when Maya has been so great. I have not being able to put into words the joy we have experienced over the last few days.
Maya has been off steroids and chemo for a week today. This break has been more than welcome and we have been able to enjoy not only wonderful belly laughs and jokes, but stair climbing and dance parties. These dance parties might not be just like they once were but they most certainly have been more refreshing than anything. Even more refreshing than the first deep breath after stepping off the plane at the Lihue airport. In fact she makes plans to go “back to Kauai” most days.
It’s amazing how these last few nights have been filled with her amazing energy and she has even stayed up till 10 or 11. While we have watched The Good Dinosaur multiple times, her days have also been full of pretend play and cooking. A few more visitors have ventured into our home and she has been very happy for the interaction. Today she woke Grandma Bella up for a dance party and she just finished her day with the same. Her belly has come down a wee bit…enough to wear her awesome Elsa costume for as long as possible. These days feel almost like a normal life with my previously amazingly healthy three year old.
She still looks very swollen. I understand it will take several weeks to look “normal” again. But in general she is good. We are all good. Scott and I have discussed how we have heard many comments on “you’re handling this so well”. Our answer is and has to be….it can be much worse. It can be so much worse. We will have more awful days. We are anticipating some pretty awful weeks this summer during the phase called “delayed intensification”…also known as the “red devil”. But even with those looming days, we have hope. We have this incredible girl. She might look different but her mind, heart, and soul are still the same Maya we know and love. Some families have to watch their child not only change physically but mentally. Some children have been known to lose ten IQ points. Some families have to watch their child change permanently. And as we all know, some families don’t get to have their child at the end of it. With all of this, it is impossible for Scott and I to be negative.
Tomorrow starts Consolidation. This is 4 weeks. Maya needs to be NPO (nothing by mouth) starting at 3am. We check in at Renown at 9, her Buddha button will be accessed, we’ll wait for lab results, then the ICU docs will come put her under for her lumbar puncture (LP) with methotrexate infusion. She will also get a dose of vincristine (IV chemo) and we begin her once a day oral chemo called 6-mp. She will get three weekly LPs. We also meet with the Norther Nevada Children’s Cancer Foundation tomorrow – pending Maya’s condition. We have spoken with them on the phone a few times and I’m not sure what we might receive from them but it will be nice to meet them.
It has been wonderful running into people…some of my people…in the community and hearing how much Maya is thought of. My heart couldn’t be more full. To clarify some thing – with this type of cancer, remission is wonderful but not the end. It means they cannot detect any leukemia in Maya’s blood but after 5 decades of research, they know it would comeback if not treated with this standard of care. Maya is considered “standard risk” which means her risk of the leukemia returning is “standard” or average (it would be better if she was “low risk” but we are just happy she is not “high risk”). It also means she will get most of her treatment here in Reno and the Red Devil phase only 2 months. If she were high risk she’d need most treatment in Oakland and Red Devil would be the majority of her treatment.
We are so grateful for Maya’s prognosis and treatment plan.
Today the dragon is flying. She is soaring over her rebuilt castle feeling strong, fierce, and ready. The castle will be attacked. The dragon will be attacked. This we know. But she is covered in armor and protected with more Love than ever before. Soar dragon. Tonight you fly. Tomorrow starts a new battle.
Love is Life.