December Scans

Last week, Ava had scans here in Johnson City to make sure a suspicious spot in her abdomen was not dangerous.  It wasn't and she is still all clear!

Ava has been dreading this appointment for months, due to the necessary needle stick for the IV contrast and subsequent bloodwork, since her port ("Wilbur") was removed in October.  Her anxiety was absolutely justified considering what she has been through with needles and hospitals in general these last 6 months.  I wish I could say the needle poke went well - it didn't.  Her trauma/PTSD is most evident in these moments.  Fortunately, the nurse heard us, assessed Ava's state appropriately, and immediately brought in an ultrasound machine and a technician who found a vein and connected the first time.  We are so thankful for hospital staff who listen to parents as we advocate for our children.  This is not true across the board. 

After the poke, the day went smoothly - Ava was delightful and so very happy to be done with the dreaded needle.  She got to meet JB the therapy dog and talked the ear off of JB's human.  The staff at the St. Jude affiliate wanted to celebrate with us too, and they showered Ava (and Bo and Lily!) with presents and party hoopla.  We are quite fond of these wonderful people. 

We have been communicating regularly with Ava's team - the St. Jude staff, her therapist, and pediatrician in order to attempt to provide the best care for Ava as she deals with the aftermath of her trauma.  One of the steps that we are taking to help Ava integrate back into normal life is giving her a small dose of *Zoloft.  We have learned that most children post-cancer need a little "brain medicine" to help them navigate changes and process through their various traumas. This low dose is intended to take the edges off just a little bit and to provide her with an extra bit of calm while her brain heals.  We haven't seen marked differences since she began the medicine, but it usually takes a couple weeks to get into our systems.

--(*In our house, we choose not to adhere to cultural norms which tell us to be ashamed of needing therapy and/or medicine to help us navigate difficult situations and chapters of our lives.  We seek to dismantle ideologies which say that perfection is the standard and that we must present a false image in order to fit in.  So, we try to talk about the ways we are struggling and highlight the routes that we take to do our work to be healthy and whole.  While it may make some people uncomfortable to see through the rosy pictures into the real stuff - the hard stuff - this honesty and authenticity also provides permission for others to ask for the help they need.  So, we are gonna keep doing what we do...)--

Ava's re-entry into school has been amazing.  We cannot brag enough about her teachers, administration, and staff.  Though she has some typical struggles, overall it really does feel like is caught up with her classmates.  Most mornings, she even looks forward to school. 

As the year's biggest holiday approaches, we have so much gratitude, while also looking forward to the dawn of a new year - one which hopefully will not hold so much turbulence and difficulty. 

November Update (in December)

As we have been entering back into "normal" life, it has become increasingly difficult to find time to sit down and write updates.  And, since the updates aren't nearly as exciting and/or monumental as the previous months, I may not prioritize this activity as much as I would like.

Here's a little bit about what's been going on:

- Ava is back in school full-time and is doing extremely well.  Her teachers and administrators have been incredible in getting her caught up and re-connected with the curriculum.  We are so thankful.

- Ava's energy level is pretty much back to normal.  She plays hard and looks healthy - and if it wasn't for her hair, you wouldn't know she is recovering from cancer.

- Ava's hair is growing back!  It's probably about an inch long and she loves being able to style it a little bit in various ways.  However, she always wears a hat to school and in public, and doesn't really like to show people the progress - just FYI.

- Ava loves to talk about her cancer journey.  She needs to talk about it.  We encourage her to put words around her experience whenever possible, since we believe that is part of the healing process.

- We are so incredibly proud of the ways that she has been able to integrate back into life.  She is an incredible little girl and is excelling in so many ways.


*At this point in this post, if you want to know only the beautiful and lovely and happy parts about dealing with cancer, or if vulnerability is not your thing, you should stop reading here.*
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I want to write about the parts of childhood cancer that are hard too.  I've alluded before on this blog to some issues that we are having - with great intention and respect - because I want to be authentic about what this journey is REALLY like.  If any mamas of cancer babies show up on this space, I want them to know they are not alone.  It's not easy.  And when it's "over," it's not really over...

The truth is, childhood cancer takes a toll on the entire family.  Ava has been through a great trauma and will deal with the symptoms of this trauma for the rest of her life.  That's just real and facts.  And it's good for everyone who knows us and her  to be aware that we are all forever changed.  Most of these transitions will be positive someday - we will walk away from the root of the trauma stronger and braver, as Ava models for us every day.  We will call it growth and be better humans in the end. 

Trauma rewires your brain and it causes a whole new set of issues, even if/when the cancer is gone.  (For more information about trauma, I recommend The Body Keeps Score as a resource for understanding how all kinds of trauma effect our bodies.)  When addressed, positive outcomes can be expected and we are taking all the necessary steps we can think of to be healthy and whole. 

We (Ava's parents) are filled with compassion and love for her, as we have witnessed ALL the moments of the last 5 months.  We didn't just see, but truly felt (to a much lesser degree, of course) what she has been through.  We also understand the science of trauma, in the best ways that we can.  This enables us to provide unconditional support and comfort for her, even in the hard moments.  But, this doesn't mean it's easy.

I know this trauma also results from many other medical situations too, so if any other parents of children-of-the-hospitals are reading this, we see you and hear you and we know: it's just hard.

I guess the purpose of these paragraphs above is to just be real - there is no point in sugar-coating our lives for the consumption of people who are genuinely care about Ava and our family.  I want each person who stops in at this space to know that they're not alone in the hard stuff.  You can say it.  You can get through it, just like we are. 

As Ava posted recently on her Instagram account, "CANCER SUCKS!!!!"  This is part of her process - to be able to say it and own her journey, because pretending like it's not hard takes away from the victory of being free.