January 14, 2017 (Scott) 

Maintenance is supposed to be the easy part. It’s described that way in comparison to the other phases of treatment. Things are supposed to be as close to normal as can be during these 18 months. But these are the things we are told by the people who haven’t lived the process day by day with a child who may or may not feel crummy and who may or may not have the vocabulary nor the confidence to tell us how things really are.

The past 10 days have been rough, and not for the reasons most people might expect. In fact, I have doubts as I write this that I should even put it out there, since the thing that’s weighing on us so heavily is Maya’s constipation.
Maya didn’t go for 6 days. Each day that passed increased our anxiety and the aggressiveness of the bowel care (laxative) doses we gave. Each day increased Maya’s discomfort and her fear that pushing it out would hurt. By day 6 we pushed each other to the breaking point–she finally produced, and she bled. We all cried and made promises to do all we can to never reach that place again.
We spent a good portion of our Saturday again fighting the same forces–physics and fear. After hours of stubbornness and screaming, and after her strength was worn down even more (and I was questioning my own), our little dragon was strong and calm enough to push. It was very uncomfortable, traumatic in many ways, and it isn’t supposed to be like this. Maintenance is the easy part. No pressure.
We’ve been in contact with our new oncologist with updates and questions. He’s kind and makes himself available to us night and day by email and phone. I’m pretty sure Sara texted him a picture of some poop this evening–I made sure she sent a warning first since it isn’t polite to surprise someone that way.
We have some concerns about the effects of 6-mp and methotrexate on Maya’s liver enzymes (I’ll leave it at that… Sara’s motherly assessment would undoubtedly have more detail). There are worrisome symptoms in the constipation and other details (of which I promise not to show pictures). On the bright side, Maya is not turning yellow, and she obviously feels much better having cleared out her belly tonight. There’s more to do, but we made significant progress. She’s sleeping soundly next to me now, and just before bed she said, ‘You’re the best mommy and daddy ever. Thanks for taking such good care of me.’
These few days have taken us back to the stress of induction. I talked Maya through her fear of needles and procedures then; we had our moments, but we overcame challenges together because she never let fear take control. Surprising that something as simple as constipation has thrown us so far off the routine. As one oncologist I spoke to on the phone mentioned, ‘constipation is no joke.’ When I think back on the sleeplessness, lethargy, vomiting, radiating sciatic pain, fear, and what it took for all of us to get a little forward progress it is clear this is one of the toughest challenges we’ve faced since our time in Oakland. No joke.
Thank you all for being there for us, and for reminding us we’re not alone. Being a parent is hard. It’s also amazing like nothing else in this world that I know of. We’re blessed to have the chance to play this role in a life, and we’re blessed to have the support of so many strong, loving people.
Thank you.