The Climber

This has been another slow week here at St. Jude.  We did lab work on Monday and her numbers looked good, except for her phosphorous level - this required a doubling of her current supplemental dose and is not a huge concern.  They will run the numbers again tomorrow and see if the upped dosage was effective. Throughout the week, we have also had appointments with Psychology, Dental, Social Work, and the nurse practitioner.  All of these went great. 

Ava has mostly been doing GREAT.  In fact, yesterday we went to an indoor rock climbing facility and discovered that she is an amazing climber!  This was her second experience rock climbing and she executed some moves that were extremely impressive.  We are hoping that this can be an activity we nurture in the future.  She has been eating better and in general, seems to be "normal" (ish) in terms of energy level and physical ability.  

Along with feeling great, there are several moments per day that she experiences grief: that she is spending the summer here, that she is missing so many fun things her siblings and friends are getting to do, and in general: that Beatrice the Rude Tumor is in her body.  We are trying to let her experience these moments of sadness and anger without trying to fix it.  We can't.  We can't coach her into not feeling these types of emotions, or buy our way out of it.  She is human, and we feel the same way, honestly.  It is a common sentiment and practice (subconsciously, in most cases) among parents to prevent our kids from experiencing negative feelings - to keep them "happy."  Frequently, we have to remind ourselves that it is our job to help her learn to navigate hard things, not fix them so that life is easy.  The easier and extremely tempting route is definitely to distract her, or pretend, or buy something else. 

To be clear, her spirits are up most of the time.  She keeps us laughing and busy and playing games.  We also feel very blessed because Ava has a new friend that she really enjoys, and that has been the best medicine of all.

Overall, we are all doing ok.  The adults here are definitely experiencing some down moments, and some moments of crazy (speaking for myself only, here).  I'm guessing that's normal, and just part of the deal.  We are doing the best we can!  Thanks so much for your prayers and continued support in all the ways.

Round 2 of chemo starts on Wednesday of next week, so Ava will be inpatient through at least next Saturday.  

Sending love from here to you, wherever you are.