Mar 24, 2016 12:42am (Sara)

While today was a heavy one, it was also a great one. There were ups and downs but it was filled with even more laughs and milestones. Maya continues to get stronger by the minute. She walked more today than she has in probably a month. After her procedure, she walked down the entire stair case by the piano in Renown (seems like a lot…maybe 40??). She also played around outside of the hospital in the herb garden/labyrinth area. Then she climbed three flights of stairs in the parking garage. She was unstoppable. And she even cracked some jokes. It was amazing.

The day started out with a dance party…as Elsa of course…which was fine until we had to leave for Reno. We had to come to a serious compromise since Elsa’s dress is really not that accommodating for access to her port nor her back. It was a challenge but we were only 7 minutes late so…count it.

The clinic was actually quite busy today – Wednesday’s are “procedure days”. They schedule the pediatric ICU doctor to come put the kids out with propofol (an IV med rather than the typical gas sedation). We actually met a little girl who is just about done with treatment. She is in the high risk group so our paths look somewhat different but it was nice to meet another family.

Maya’s ANC has dropped to 740 and they almost didn’t do her procedure since there are blood count parameters that she needs to meet in order to progress through the phases of treatment. That call it “making labs”. If Maya was in the high risk group she would have continued on in the clinical trial and this would mean there was no wiggle room for the numbers. Since she is in the standard risk group, the doctor has more autonomy and can determine the ability to move forward with her clinical judgment. The treatment for ALL with standard risk is very planned out and rigid in most ways but we are not bound as strictly to some parameters and protocols. So we moved forward and here we are…in “consolidation”.

Maya had a lumbar puncture with intrathecal methotrexate infusion as well as a dose of vincristine. This will be the same next Wednesday. And the Wednesday after that.

After Maya’s procedure, we met with the Northern Nevada Children’s Cancer Foundation. They were all wonderful people and I even ran into a girl I taught ski school with many years ago. It was very neat and everyone is so kind and loving.

Maya started a new chemo tonight. It’s called 6MP and its a liquid we give her orally. It’s pretty stressful since its one of those drugs that can’t be taken with dairy or citrus and on an empty stomach…I wish I knew when my snacking-whenever-preschooler’s belly is empty! I contacted Heather – Alicia the Unicorn’s mom – to see if she had any insight for me. Alicia is about 8 days ahead of Maya so I feel lucky to have someone jumping in first – as awful as that sounds. We took her advice and gave Maya her first dose 2 hours after dinner with a little Apple sauce. It can cause nausea so we hope she just sleeps through it. 6MP has to be given 2 hours after a meal so we are going to have to be pretty good at dinner times…and I suppose no more nightly cup of warm milk…ugh. How even the small changes can feel so big in times like these.

She’s on this for 29 days this round so I’m sure we’ll get the hang of it…We have to get the hang of it since the restrictions are for efficacy and each dose is so important. I already cried about it in fear that we didn’t do it right. I’m sure I’ll be on the phone with the doctor tomorrow.

The father of the girl we met today told me “it does get better”. I hadn’t even said anything yet. Maybe I didn’t have to say anything…maybe he just knew the look on my face.

I discussed with Heather tonight how I try to stay strong but sometimes I just don’t know how long I can last. Then I just look at my baby girl and I somehow know I can. She agreed with me and mentioned that she sometimes feels self pity for all the things she is missing out on. It’s hard not to have a pity party…and sometimes I feel like I deserve one. But I can’t really let myself get there. I would just feel guilty…and I really can’t let myself have any more mommy guilt. I know we all have to change. My little family will likely never be the same. But, as I told Heather today, we can’t let go of who we are. I have to keep the true me in some way…it’s just going to take some self reflection and time to figure how to do that in this Brave New World.

Motherly assessment: WBC 2.1, Hgb 10.3, platelets 300, ANC 740. Maya has only lost 2 pounds but her belly is probably 30% of what it was. Her moon face is still full but that doesn’t inhibit her. She is fierce and still strong. Even with two types of chemo today, The Dragon is more than ready for this battle.