Tri Delta House

This is a huge thank you to all the Tri Deltas around the country, who make it possible for us to stay in a very nice place for free.  I appreciate you and the work you do to support families in our position and provide comfortable accomodations.

I am amazed by this place.

Tomorrow:

We had a great weekend with Ava.  We visited the Peabody hotel, the Pyramid, and the zoo.  We walked a lot of sidewalks, saw a lot of different types of people, and pretty much just pretended like we were here to see the city.  A few times, I even forgot why were here.  It was nice. I feel less tense/panicked and a little bit stronger. 

Ava is anxious about tomorrow, though I think it feels comforting to know that she'll be asleep for the next "pokes" (her greatest fear).  We truly enjoyed our days off though, and we know the next 3 will probably be intense.  We are all fearful, but have chosen to trust the amazing staff here at St. Jude. 

We won't get results back from the biopsy until Wed. at the earliest, but I'll try to post to let everyone know how tomorrow's procedures go.

One ray of light in this cloud of uncertainty is that we'll get to see our other two babies later this week.  All three grandmothers are delivering them to us and we are more than ready to have our family together. 

I feel like I should spend every minute of every day expressing my gratitude for the people who have been supporting us and praying for us.  We can feel it and it's been non-stop.  One friend raised enough money to cover the extra plane tickets in less than a day.  Another friend ran through an airport to hug us for less than one minute.  So many of you have held up your muscles to show your support of Ava and posted encouraging words for her on Instagram.  You have sent us your prayers and entertaining texts which make my kids smile.  A family is doing a t-shirt fundraiser for us.  Someone cleaned our house and another person gathered the things we didn't think to bring here with us...  I could go on and on and on and on.  I can't possibly acknowledge each separate thing in this moment.  All I know is that the squad (above) who is here with Ava is only a small portion of the people that love and care for her.  This knowledge is incredibly meaningful.  Thank you all. 


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How's Ava doing?

I'm sure many of you are wondering how Ava is doing!  Short answer: she is doing GREAT.  It's hard to believe that this girl - who played hard over last weekend - is so sick.  She's been carrying a mass the size of a softball in her pelvis and the shock that this is cannot be described.

Besides the trauma of all the needles, Ava has been incredible.  We chose the theme "Ava fierce and brave" for a reason.  On the days when we were getting one piece of bad news after another, she would cry, ask questions, accept it, and then move into the new space of reality with spunk and laughter.  In short, she has been delightful.  Big Bo, Holly, and I are treasuring this time with her even though the circumstances are the worst.

This weekend is free.  Yesterday we visited the Peabody, the Pyramid, and rested.  Today we plan to visit the zoo and rest some more.

Ava is very anxious about tomorrow and her procedures.  Please pray that she'll be able to enjoy this day and that her mind will be calm.  She has done an amazing job verbalizing her feelings and frequently says, "I'm scared."  We assure her that this is normal, and remind her each time that she can be both scared and brave at the same time.

Physically, Ava is operating on a smaller amount of energy and has lost weight in the last two weeks.  Mostly, she appears healthy, but we can see in her thin frame and under her eyes that she is not well.

Overall, she's been an incredible model of how to be strong in the face of adversity, laugh at the same time you cry, and saying hard things.  I want to be more like her.   

Expectations (Edited)

As I prepare to go live with this blog, I want to ask a few things of our community:

1. Please be patient with us.  The outpouring of love and support has been overwhelming and has carried us.  I mean that quite literally - your displays of strength and love have made us stronger.  Thank you.  With that said, we cannot possibly respond to all the calls, texts, and messages - not yet.  I know you understand, but I still feel the need to say that we hear you and feel your love even though we can't respond to everyone individually.  And, let me be clear: please continue to contact us - we need to hear from you, but you might not get a response. 

2.  At this time, please don't suggest other forms of treatment, alternative strategies, or whatever other ideas you may have for getting Ava better.  We know your intentions are good, but I need to make this boundary clear.  We are so thankful to be at the best hospital for kids in the world.

3.  I'll be posting on this blog as often as I can.  Those of you that know me personally know I'm a writer, so this is the best format to keep up with us.  Share this link on fb, send it to others, and spread the word.  We won't be sending out many group texts anymore, in general.

4.  Our people have been very generous with our family and I definitely do not have the words to describe what that has meant to us and how it enables us to be fully present here, for Ava.  Someday, I'll thank you ALL individually, but for now just know that we are so incredibly moved by your support. Thanks for understanding why you haven't received a thank you note yet. 

5.   Ava is loving having an instagram account- previously, our kids didn't have social media.  She reads all your comments and smiles the whole time she reads.  Keep those coming.  That will be a space for photos and encouraging words, focusing on keeping Ava's friends/family connected to her.

6.  Please do not share the story of your friend/family member that didn't survive their battle with C------.  Not to us, not right now. 

Thank you all for caring about Ava and for loving our family so well. 

Friday

On Friday, Ava had an MRI, which took most of the morning.  Then we met with our social worker (and found out we have access to counseling services - yay!) and then met with our surgery team and anesthesia.

The MRI didn't reveal any more problem areas, so the plan is to remove and biopsy a small piece of Beatrice (mass) to make sure we have a specific name for the type of cells we are dealing with.  You'll notice I have a hard time saying the C-Word.  I do, and I will say it more often in the future, I just am having a slow process.  Anyways, on Monday they will extract a piece of the mass, install a port for all future IVs, and take a look at Ava's bladder via scystocopy (where Beatrice started growing).  They will be attempting to figure out if the mass is growing out of her bladder, is attached, or is just pushing against it.  Additionally, Ava has enlarged lymph nodes and our understanding is that we need to identify a specific name for what type Beatrice is before we figure out what's going on with lymph nodes. We will find out the results of the biopsy on Wednesday, we hope.  If not, we will have to wait until Monday, because St. Jude is closed on Thursday and Friday for the 4th. 

So, those three things will happen on Monday.

We are dreading Monday, but are grateful for having 2 full days off from medical stuff so that we can spoil Ava and enjoy some Memphis things. 

Arrival to St. Jude

Ava, Holly, Daddy Bo, and I left Johnson City in the evening on Wednesday, laid over in ATL (where one of my BFs from high school chased us down for quick hug), and arrived in Memphis around 11 pm.  By the time we arrived at St. Jude, we were exhausted, scared, and completely disoriented.  We expected to crash into a bed of some sort, but were informed that blood work was to be done that night.

Ava had already been through significant poking the last two days and had existing trauma leftover from her appendix rupture incident of 2016, which included a 1-week stay in the hospital.  This midnight bloodwork was extremely unpleasant and we were beside ourselves with fear.  At this point, we still didn't know what was going on, and felt the urgency behind the orders to gather blood samples upon arrival.  Ava was a trooper.  At 2 am, we finally got to fall into beds.

Thursday morning, the whirlwind resumed immediately.   We were introduced to many people at St. Jude - our Care Team.  It was a lot of people, all at once.  Everyone was kind and gentle, but it was overwhelming.  Our oncologist fellow came to speak to us and for the first time, the language of "if...treatment" became "when....treatment."  We finally came to understand that one of the blood samples from the previous night indicated a certain type of tumor.  This was a turning point, when the hope for benign was dissipated.

The rest of the day, we went to appointments with various members of Ava's Care Team.  During this craziness, Ava was incredible.  She was fierce, and she was brave.  There were more pokes, and she recovered and was her spunky, sassy, fun-loving self.  For those of you that know her, it will be no surprise that she was ok with all the attention.  Holly pulled her around in a wagon, and she received gifts at just about every stop - coloring books, squishies, a backpack full of goodies... 

We went to bed exhausted, confused, and terrified.  The St. Jude complex felt like a bizarre alternate universe that could not possibly a real thing we were experiencing.  That our daughter had a softball-sized tumor in her lower abdomen seemed impossible. 

Ava's herstory of Beatrice.

In three different 4-5 day periods in the past 3 months, Ava has had pain in her lower abdomen.  We assumed it was a UTI or something similar and took her to her pediatrician to try to figure out the origin of her pain and discomfort.  We were all puzzled by these episodes, but the pain always went away.

Right before our summer vacation in mid-June, the mystifying malady struck again - our pediatrician did labwork and also ordered an ultrasound for after we returned from the beach.

On Tuesday, June 25th, we went for the scheduled ultrasound, with the expectation that we would discover nothing significant and be home in a couple of hours.  However, the ultrasound revealed a mass and the whirlwind began.  A CT scan was ordered for the same day - it revealed additional problem areas, including in the lymph nodes.  Holly and I were confused, overwhelmed, and and terrified by this new information and took Ava for her favorite dinner at Panera Bread.  While there, our pediatrician called us and informed us that we should assemble our support team and be prepared for a rough road ahead.  We learned that we would probably be sent to St. Jude in Memphis the next day.  I'll never forget that phone call.

*Beatrice = the mass (now known to be a tumor)