1-Year Anniversary of Clear Scans

 

 This past weekend, we were so grateful to be able to celebrate the 1-year anniversary of Ava's clear scans.  It is truly hard to believe that it has been a full year.  We marked the occasion by planting a tree in our backyard.  It's a crepe myrtle with pink blooms, much like the ones that cover the campus of St. Jude.  

Below is what I wrote to read during the tree-planting "ceremony."  Also, many thanks to Bo, who read it out loud for me after it became clear that I could not get through it.  

____________________________________________________

When we left for Memphis for the scans that would reveal Ava’s cancer free status a year ago yesterday, we could barely bring ourselves to hope for the disappearance of all those cells.  There had been too much bad news and we had basically trained ourselves to present an outward image of hope and confidence, while inwardly the worst-case scenarios swirled in our heads – statistics and probabilities and tiny, hidden microscopic cells, sent out by our nemesis: Beatrice the Tumor. 

We named it Beatrice  - we named the tumor.  Seems kinda silly now, but at that time, it was helpful to aim our fear and anger towards something with a human name.  Most importantly, it seemed to help Ava.  During her 4-month battle against Beatrice, she was equipped with all the tools necessary to have a chance – the best doctors in the world, state-of-the-art medical equipment, a world-renowned hospital, and most importantly, a supportive and present family. 

I can only share from my experience, but I know that when we heard that Beatrice was gone – completely annihilated – I felt a little numb.  It didn’t seem like it could be true; this has to be the worlds shortest cancer journey. 

It was, but also it wasn’t, because the journey continues.  I’m still learning you can never walk away from cancer.  We see it every day – in others in our community, in our learned behaviors, and most significantly, when we look at Ava.  It will be some time before her hair isn’t a constant reminder of that bald head and I know we will all miss these curls.  But for those of us who know her well, we can see the marks that cancer left with her. 

When I look at Ava I see the bravest, strongest girl I’ve ever known.  I see a girl who looked a tumor named Beatrice in the eye and said, “I’m not scared of the Beast in the Belly” – I see a girl who continuously laughed while crying and cried while laughing and understood it was ok to be both happy and sad at the same time.  I see a girl who grew up too fast and was forced to overcome unimaginable pain.  I see a girl who was able to verbalize what it feels like to be in her body – a skill that most of us were never taught.  I see in Ava a girl becoming a woman whose journey was interrupted with trauma, who is now aware that she can take on anything because she’s already defeated cancer.  She demonstrated over and over that you can be both scared and brave at the same time.  She endured more needle pokes in the past 16 months than most of us will have in our entire lives and there are still more to come.  Ava shows me what its like to be fierce and brave and that this way of being in the world can help you do the hardest things.  You have quite a story to tell and how you use your story for good will be your life’s challenge.  

________________________________________________

 

Ava's 1-year scans are the last week of October - thank you for praying for her!

 

3 Month Scans

After a whirlwind trip with no shortage of mishaps and unfortunate events, Ava is home and ALL CLEAR!  Doxology.

The trauma with needles continues, since she was poked FIVE times while at St. Jude.  She is a hard stick every time and this trip proved no different.  We will spare you the gory details of an exploding vein, and a 1 AM trip to Night Clinic, followed by low kidney numbers (which turned out to be dehydration, not an indicator of something serious).  Let's just say that Holly, Big Bo, and Ava are exhausted and so, so glad to be home. 

Despite the unfortunate "poke" encounters, Ava got to see her beloved Brinley who was also there for follow-up scans; and they overlapped with our local friend Adrienne who attends school with Lily and Bo.  This community of cancer survivors is critical for healing and an understanding exists between them that none of us will ever be able to fully understand. 

We are so thankful to have this event behind us.  The fear you experience as a parent, knowing that the worst could happen again is overpowering at times.  It's my understanding that this fear decreases over time, but never fully disappears.  For now, we choose gratitude and rest easy. 

Thank you all for your prayers and support.  It continues to be invaluable to us.  

A Thank You Note

Dear Friends,

I have been laboring mentally over this post for a long, long time and now I feel it is overdue.  I just don't know how to say it well, or how to say it big enough, or how to cover it all.  The task seems too large to accomplish in any sort of meaningful fashion.

Also, to our credit, we are still dealing with some pretty intense aftermath of medical trauma, so the journey part of all of this is not over.  We rejoice with each clear scan, but we also are reminded daily of Ava's PTSD in other ways.  And, we are still learning about "secondary trauma."

But, the task remains:  how do we say thank you?

How can we possibly say the right words to convey how thankful we are for the varied and vast ways that you - our community - supported our family?  You should know:

Because of your care packages sent to St. Jude, a little girl with cancer named Ava smiled each day.
Because of the money you raised for us, we worried minimally about spending so many months away from our jobs.
Because of your prayers, we were comforted.
Because of the tshirts you purchased (and the wonderful family who made them at their dining room table), our bills were paid.
Because of your visits, we were revived and re-energized.  
Because you stocked our refrigerator, we were able to stay home and recuperate.
Because you took care of our house (including getting a huge tree removed, lawn mowed, house cleaned, etc.), we could be present at St. Jude with the process of treatment.
Because of your texts, calls, emails, and social media comments, Ava and her family were encouraged and uplifted.  
Because of the fundraisers you hosted (car washes, bracelet sales, tshirts, store profits, benefit concerts, and more), we were able to devote emotional/mental energy to getting Ava well.
Because you took care of our other children and our pets, our focus remained on support for Ava.
Because of your #squadupforAva posts, we felt connected and less alone.  
Because you donated money to our family, our extra plane tickets to/from Memphis were covered. 
Because of those of you who welcomed us home by lining our road and cheering for Ava, we have felt included in this community like never before.
Because you made the quilts, we were kept warm in ways both physical and emotional.  
Because you communicated with us, checked in, and kept us updated about "real life" - we remained sane.
Because you sent gift cards, we enjoyed small luxuries which kept us hopeful.
Because you sent (and send) donations to St. Jude, the amazing care they provide us can continue.
Because you sent us care packages, we were provided with the daily essentials we lacked and some extra goodies to keep our minds occupied.
Because you welcomed into your home family members from the blended other side, we were united in one cause, one mission: to get Ava better. 
Because you took care of us, we now know how to act when families are in crisis. 
Because you rallied around Ava, she kept hope and stayed connected.
Because you rallied around our entire family, we made it through.

As a write this list, I know I will forget something - an act, a moment, words, a donation, a person who did an amazing thing.  I will neglect someone and I'm sorry.  This is one of the reasons I've put off writing this post, because I dread the one or more people/kindnesses I'll unintentionally leave out.  There is no way I can possibly thank you each personally for each individual thing you did for us.  Some close friends assured us that you all did not expect thank you notes and we took these words to be true, with great relief.  We simply could not keep up - did not have the emotional energy.  We tried keeping a list for awhile, but were distracted from that habit as well. 

But when I say we are grateful, you have no idea how much we mean it.  From the biggest gifts (which paid our entire mortgage payment) to the smallest (which contributed towards other bills/expenses), each kindness and generosity mattered to us and it blessed us beyond comprehension.  We received each gift with humility and astonishment.  It was and is overwhelming to be the recipient of such generosity.

And, to be absolutely clear, the gifts I am referring to are not just financial or material.   Your spoken and written words were gifts, your smiles and hugs were gifts, your presence on our road to welcome Ava home were a gift, your support was a gift.  There were so many types of gifts given to us, and each was a blessing beyond measure; each mattered the same to us. 

Most of all, I need you to know how much your gifts were significant to us in terms of community.  You see, our family has always felt just a little bit on the outside.  Even our children are aware of this.  I'm not "from here" and because our family is also non-traditional, it's easy to fall into a way of thinking which designates us as different.  I want you to hear this though: that feeling, that mindset of being an outsider, it shifted this past year.  We will never be the same, on so many levels. 

Our local community was absolutely incredible in the ways that you showed up for our family - you raised money, you cheered us on, you kept in touch. And not just our friends, but acquaintances and strangers walked with us through the difficult months.  The financial support was HUGE for us, but even more so was the feeling of inclusion - that our family was a part of this larger collective of good people.  I cannot describe adequately how much this meant to us. 

Additionally, those of you aren't here in East TN - those who live outside of our small community - y'all showed up for us too.  Those of you that we've shared space with before and some of you who just know our people - y'all were here for us.  I am overwhelmed when I think of all the names and faces who were present for us.  I believe that generosity of all kinds blesses both the receiver AND the giver and I hope this has been true for each of you. 

Thank you for the gifts.  Thank you for the prayers.  Thank you for the kind words.  Thank you for blessing us with the gift of community.  Thank you for loving Ava and all of us. 

This post still feels inadequate and unfinished, but I think I should let it go for now.  Please accept these words as the most sincere "thank you note" I can muster.

We are grateful for you. 

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.*
____________________________________________________________________________


____________________________________________________________________________

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. 

Ava's Return

Ava has been integrating back into school these last two weeks and it is going great.  Her teachers have been wonderful and have offered to help Ava catch up in ways that go above and beyond our expectations.  We are so thankful.

In general, we are easing back into a regular sort of life.  We've had a lot of extra hurdles to deal with: health issues, a dead vehicle that needed to be replaced, ill family members, and other things that seem super minor compared to our brief (but intense) journey with cancer.  Holly will go back to work full-time on Monday after working a lot from home over the last couple months; and I will take on what I can with our landscaping business as the outside season wanes and will teach again next semester. 

We look at Ava and marvel that she defeated this illness in 4 months.  Her hair is starting to grow back - she was thrilled to be able to change the direction with a comb the other night!  She is active - plays in the yard and at school each day.  She is training our dog to be a therapy dog, which may be the cutest process to observe of ever. 

For Halloween, Ava has chosen to be a cancer patient.  She has a gown, homemade IV stand, and tubes/bags galore, provided by one of our amazing nurses at St. Jude.  We understand that this might feel a little bit "too soon-ish" to some folks, but we are choosing to honor her process and wishes to make light of her journey in this way.  In some form, this is part of how she is dealing with the trauma she has been through and we support her, with understanding that others may not view it through the same lens. 

Overall, Ava is adapting to normalcy really well and we are all committed to never taking dailiness for granted again, though I'm sure this mindfulness will be increasingly difficult as the days between cancer and regular life increase in number. 

Re-Integration

 

Leaving St. Jude

I walked out of St. Jude for (what may be) the last time on Friday, after Ava's surgery to remove her port.  It was a bittersweet moment.  We may all be back someday for Ava's scans, but for now, paying for extra plane tickets for a short visit doesn't seem do-able.  She'll have scans here in JC in December, and will go back to St. Jude for scans in Feb. and then every 3 months for a year.  The next four years will require scans every 6 months, and once a year after that.  

   

I'll miss St. Jude.  I've never encountered a place in the medical field where people enjoy where they work, where the space is designed to nurture the whole person, and where - for lack of a better term - the energy was good.  I think I'll have more to say about how amazing St. Jude is in coming posts.

Now, we work on establishing what "normal" is in this new chapter.  There's no getting around it - we are all changed, so the normal we knew can no longer be.  If we frame it in a positive light, it sounds good: we get to create our new ways of being.  

Ava's oncologists cleared her for a return to school immediately, so we've already been integrating her back into 5th grade.  Today, she'll go to one class, lunch, and recess.  Tomorrow, we might add another class.  Within a week we expect she'll be attending full days, unless something unforeseen happens.  Her teacher let us talk to her class today about Ava's journey with cancer and how to be supportive friends to her emotionally, psychologically, and how to do their best with hand hygiene/germs.  

Ava's energy level is amazing and her spirits are usually high and, as is completely normal, there are some behavioral issues to deal with as parents (to be transparent).  We'll just keep doing the dailiness the best way we know how, just like all parents do.