July 13, 2017     (Sara)

July has been a much better month for our little family. We just about felt like a normal family. We started the month off with a beautiful trip to Donner Lake. We stayed in a wonderful home on East Reed Avenue. The house was built on the side of the mountain and the lot next to us was being developed. It is incredible how they make those home on the cliff side and I was a little nervous seeing the diggers in the lot next to us. But watching Lincoln and Liam’s face while the crew worked was so worth the noise for a day. We spent most our days down on the East Beach (where they allow dogs) and spend our time kayaking, paddle boarding, hot tubin’, watching the lake, and relaxing. Aside from one “Baywatch style” rescue of my almost 13 year old dog, Pelei…it was quite an uneventful and perfect vacation. 

To sum up the rescue story: Scott had taken Maya out on the Kayak. Pelei doesn’t like our “pack” to be apart so she decided to swim after them. The distracted mommy (me!) was feeding Lincoln a snack and chatting with Megan, Genessa, and Bapa Pat. We saw a very ambitious dog swimming out in the lake about 200 yards out. When I couldn’t find my own dog I realized Pelei (the Poof) was that ambitious dog with her cute floppy ears. I then thought she might be in trouble soon since it had probably been at least 10 minutes of straight swimming. If she was the 6 year old swimmer she was I wouldn’t have worried. She would have found herself on “Party Island” and then come back when she wanted a carrot. But she’s not 6. She will be 13 this year and this was the first swim of the season! I freaked! I grabbed the paddle board (I should mention I am quite novice at paddle boarding) and paddled as fast as humanly possible. I screamed for her but quickly realized she couldn’t hear me and Scotty and Maya had no clue what was happening. I made it to her and a nice free water swimmer turned her my direction. I pulled her up on the board as she was starting to choke on the water…she was obviously getting tired. The Poof and I started our paddle in. You know the cool and calm looking dogs on paddle boards? That was totally…not us. She wouldn’t sit or lay down and insisted on almost flipping us over the whole ride back. But we made it. As soon as we got there I started to hyperventilate and cry. Apparently it was a bit more anxiety than I was up for that day. It took a few minutes for me to calm down but I did. And enjoyed the rest of the trip.
Maya and Lincoln swam and played. They giggled and explored. It was our first sleep over with our besties (Auntie Megan, Uncle Adam, and Liam) and we all had a wonderful time. Donner Lake was a wonderful place to spend our time and I cannot wait to return.
We are now back at work and trucking along. It is amazing what a week’s vacation can do to our work schedule. Maya continues to do well. We are crossing all of our fingers and toes and praying hard that Monday’s lab draw will confirm how she apparently feels. We know she can fly above some of the discomfort and the way she acts doesn’t always correlate with her immunity but…man this girl is doing great. She has energy, she is pooping, she is eating, she is exploring, and playing. We had some special friends (Michele, Laeta, and Silvia) over for dinner this week. Laeta is Maya’s bestie since she was a few months old. They haven’t seen each other since December….but they way they played you would have thought that was last week. My heart glows knowing she at least feels good. 
We head in to Renown for a lumbar puncture and chemo on Monday. We will check labs to make sure she’s good to go then she will get more IV chemo in addition to her quarterly intrathecal (spinal fluid) chemo. I know there is a chance her labs could be less than ideal. I know we could feel more uncertain come Monday. But for some reason I am hopeful. Even if she has tanked, at least she has had the opportunity to enjoy. We all have. And if she hasn’t tanked? We can start talking about Lincoln’s start of school. More outing for Maya. More security.
One last thing. The news seems to always hold uneasy headlines at the forefront. Politics, climate change, terrorism, and over all fear. Some people might have missed yesterday’s truly amazing developments. I will attach a link to The New York Times article about the F.D.A push for the approval of a leukemia treatment that can eliminate some of our very real fear.  A typical B-cell ALL kid has just about 95% chance that they won’t relapse. Maya’s prognosis is slightly unknown since she has needed allopurinol in order to metabolize the daily dose of 6MP (please see previous posts for more details on that). While our oncology team feels she might have that same chance, reality is, no one can be certain. We are in uncharted waters. This article is the outcome of great science and diligent support for human progress. As a person who lost her bestfriend to childhood cancer and now a mother to a cancer kid, it is with a light heart I share this news. We pray that Maya will never require this treatment since she already has a good prognosis but…if relapse creeps into our fate, it is wonderful to know there are more options than accepting the dismal prognosis we have been warned of. Developments in this arena are so important and I am proud of these scientists. I am so grateful for the people who have worked on this project, for those who have supported it in any way, and for the families that have made incredible sacrifices. Please take a look at what has been accomplished.
Love is Life.
https://www.nytimes.com/2017/07/12/health/fda-novartis-leukemia-gene-medicine.html