Aug 24, 2016 (Sara)

No chemo today…Maya did not make counts this morning. After a very pleasant visit to see all our favorites at the clinic, we are driving back home without chemo. Today was our first opportunity to start Interim Maintenance 2 (our favorite phase) which consists of a monthly lumbar puncture and chemo infusions every ten days. This phase is our favorite because Maya’s ANC actually recovered nicely during the first Interim Maintenance and we saw numbers that looked like a normal healthy kid! There is no scheduled oral medication aside from her multivitamin and vitamin D (and some bowel care to keep constipation at bay).

For some reason, this delay doesn’t feel near as bad or stressful as the previous delay…it’s amazing what experience can calm. Aside from scheduling around work and tying to find a good week to rent a house at Tahoe, this delay actually feels fine. We have an appointment to check labs again Friday. If she is at or above 750, we’ll move on ahead.

Our fingers are crossed for Maya’s buddy, Ethan, today. He and his family came to clinic this morning as well – today is his second check to start IM2. While today’s delay is not as tough as previous delays, there is something reassuring when our kids follow suit with the protocol. Maybe it’s safety in numbers…or, I suppose, research. I hope he’s recovered today and moving forward.

Maya’s ANC is 560. It was 470 nine days ago and then 520 seven days ago. The trend is definitely going up but who knows how long it will take to reach 750. Her other numbers are looking good. WBC are quite low but her Hgb and platelets look just fine.

Her energy is great and she is keeping us on our toes. She continues to thrive and with Delayed Intensification behind us…it’s hard to not feel a sense of ease creep back into our lives. This journey is far from over but the mountain that once looked like a burning volcano with no safe path to the other side…looks more like a ski lift up the face of Slide Mountain in a storm. Not that riding a ski lift during a storm isn’t scary…it’s just doable. We will buckle up, close our eyes, hug each other tight and…hold on for the ride. The chances are, we make it to the top and take a exhale…then ski down.

Moving forward sounds good but as we left the clinic today – Angela said “enjoy the next few days above 500”. And we will.

Love is life.