The News

Most of you have heard via social media that Ava was declared cancer-free by her Drs. at St. Jude on Thursday!  We are a little bit in shock about this, even though we hoped for and expected this outcome.  When you're dealing with such a roller-coaster, it's a habit to make sure you don't let your hopes get too high.

Here's a little bit of the story from the last week.

Holly, the kids, and I snuck away to the beach for a few nights for some R&R.  We drove back from the coast on Wednesday morning and we are on a plane to Memphis that evening!  We arrived at midnight and were exhausted by the time we climbed in bed.  Ava was brave, but was definitely anxious about her full day of appointments on Thursday.

On Thursday, Ava had several tests, including bloodwork, pulmonary function, auditory, and the biggest one: her CT Scan which would reveal if the cancer was complete gone from her abdomen and lymph nodes.  We were all eagerly anticipating the results from the CT Scan, but were pleased to hear that her lungs were functioning well and her hearing is fine.

At 2:30, we finally got to meet with Dr. Becky and Dr. Furman to hear the results.  They explained that there were some suspect tissues on her left side that they couldn't see fully.  As they were describing this, we were all expecting the worst - that it was more cancer.  They basically told us the things they suspected it could be, and that they weren't concerned.  I asked, "So...are we happy?" and they responded YES!

My experience during those moments is that I didn't fully believe Ava was cancer free until a few minutes later when the entire D Clinic staff came in and sang a song to Ava and threw confetti all over her.

That was the moment when I realized they meant we were done! Loren, Ava's beloved favorite nurse, threw a handful of confetti down her shirt and made everyone laugh.  It was a little bit of a lackluster moment, because of the confusion with the unidentified tissue, but the staff party made it more of a celebration.  Ava didn't get to fully enjoy the moment because she found out she would be receiving a flu shot later.  Bless her heart.

On Friday, she had surgery to remove her port!  It was a minor surgery and she recovered quickly. 

I will write more about how life moves forward when I have more time.

Thank you for celebrating with us and for all the support that has allowed us to move forward this far.  

Friday Blood Results

We just returned from the hospital and got some good and bad (not too bad!) news concerning Ava's numbers.  The most important number - ANC (indicates white blood cell count) - has gone up from 660 to 915.  This is good news! 

However, her platelets dropped by 10 from 75 to 65.  Dr. Cruz was not concerned and views the uptick in ANC as an excellent sign.  She also approved us to go on our trip/retreat this weekend.  We have a travel letter and strict instructions to get Ava to a hospital if any bleeding occurs, if a fever arises, or if other issues occur. 

Overall, we are very encouraged and are so thankful for all your encouraging words and prayers!  

Numbers

Ava has been wearing a mask in public and keeping her distance from people for the last week, since we found out her numbers were lower than usual.  She has been frustrated at the mask - it's hot to breathe in and this summer weather makes it even worse.  Mostly, she prefers not to leave the house- her bald head already attracts a lot of attention and the mask makes it even worse.  We kept telling her that when we go for blood work on Wed. (yesterday), your numbers will be back to normal and we'll resume this version of normal.

However, after her blood draws, we received a call from a nurse letting us know that her platelets dropped from 150 to 60 and her ANC (white blood cells) dropped from 20,000 to 660!  We were in complete shock.  With the exception of not looking quite well around and in her eyes, we were seeing little evidence of the huge drops in these numbers.  We were pretty shocked and super freaked out, especially because of her ANC level.

We ended up calling our amazing Dr. Cruz and she was very reassuring that all of this was normal after a fourth round of chemo!  Neither number is dangerously low, but we are going back for more bloodwork tomorrow morning to make sure they haven't dropped more.  The platelet number will drop below 20 before she needs a blood transfusion and ANC is dangerous below 200.  Dr. Cruz said that one of her other counts (she said the name, but I can't remember) was trending up, which indicates her other numbers will follow.  Basically, she reassured us that this response was normal and that Ava is ok - we just need to continue to be cautious of germs and public spaces.

Ava has some anxiety over all of this, understandably.  Our appointment is first thing tomorrow and I will post an update with her (hopefully much-improved) numbers as soon as I can.

Week Update

Ava's bloodwork to follow up this round of chemo revealed that her platelet count is low.  For all the previous rounds, her phosphorous levels have been the problem number, so this is new territory.  We were a little concerned, but know this is a typical response to a 4th round.  This means that her immune system is low and Ava has to wear a mask all the time around people and in public and is not allowed to hug or touch others. 

However, this hasn't kept us from connecting with some friends and showing up for some outdoor school events.  Yesterday, we took Ava to "Tailgate Day" and the walk-a-thon and she was able to see friends.  She was honored to be able to release Ava the Monarch butterfly in front of the whole school.  Both her former school (RSE) and her current school (WSE) have been SO supportive and wonderful.   Our community is amazing.

We will go back next week for more bloodwork and are hoping her platelet levels have recovered by then. 

Overall, this 4th round has hit Ava the hardest.  We can see it in her face, especially around her eyes.  Despite not feeling well, her energy level and appetite are still surprising.  We are so proud of her and grateful for the medical community that has made this journey a "best case." 

Maybe the Last Time

Ava finished her fourth course of chemo yesterday like a champion.  There isn't a whole lot to report - chemotherapy kinda feels like part of a familiar routine now.  She is feeling nauseous today, but that has been a normal response to each round. We expect that general feeling of yuckiness to last for the next 3 or 4 days.

In general, Ava has been doing great.  Her recovery from surgery was shockingly fast and she has been able to function much as a normal 10-year-old would.  We always say that if she had her hair, you wouldn't be able to tell she was fighting cancer.

One shift we have noticed in the last few weeks is that she is increasingly frustrated and angry that she has cancer and asks "why?" a lot.  Of course, we can't answer this question; we have the same one for her and all the kids with cancer.  I think we can all understand her frustration and empathize with anger about suffering, but it's hard to be present without putting a bandaid on her/our pain with trite responses.

We've been telling everyone - with great trepidation - that this could be Ava's last round of chemo.  It feels bold to say that, but that's what the doctors said.  It just feels too good to be true: that Ava has responded so well to medicines and the surgery went so well that she could be through cancer.  Holly and I were saying that it feels like we are waiting on something bad to happen now, after receiving great feedback over and over these past few months.  Of course, we won't know until after her scans in October, but we are holding on to that hope...with reluctance and self-protective skepticism. 

If she is cleared after her scans in Memphis, it is a possibility that she could be back in school by late October, depending on her immune system.  We will see. 

I will write more soon. 

Oh, the Rollercoaster

As I've described before, this whole process has felt extremely rollercoastery.  I've learned to curb my (naive?) tendency towards best case scenarios, because I was constantly disappointed and distraught during these last few months.

However, this time I would've been right to be extremely hopeful.  When Holly, Ava, and Big Bo left last Monday for Memphis, we assumed they would be there for at least two weeks and possibly months more.  We just didn't know.  I was the one hoping for two weeks, but after the first days of surgery recovery, I thought more weeks might be more realistic.

The surgeons, Drs., and nurses all kept staying how well Ava was doing and we-the-parents were kinda confused by those statements, because recovery was just really hard.  Then, our oncologist called us into the clinic during the last hour of the work day on Monday.  We were hoping for a timeframe for future chemo and any sort of plan and we got really unexpected news - that we could go home!  I don't think I'm exaggerating when I say we were all shocked.  Ava's body was recovering more quickly than expected and she is able travel.

So, Big Bo and I drove home yesterday and Holly and Ava are returning by plane today!

We also got our plan in place with Dr. Becky (oncologist fellow), calendar-wise.  Initially, we were told that Ava would have 2-3 more rounds of chemo following surgery, but we learned that she will have one in JC next week and then we will go back to St. Jude at the beginning of October for scans to see if her body is clear!  If it is, then we are...done.  If any remaining cells show up, then she'll have a round or two more - not sure where.

This is all very surreal, and while I am trying to stifle the optimist in me, it seems like it's a strong possibility that soon Ava could be cancer-free.  I feel reluctant to make that statement, because it seems like such a huge thing to hope for.

Such a hope is balanced with the realism that so many children with cancer and their families don't get to have the same amount of optimism.  Our friend Brinley and her family aren't offered the same types of news that we have been receiving.  Please continue to pray for her, her mom Jessica, brother Diesel, and Jessica's mom (who lives with them at St. Jude to help with Diesel).

Here is a photo of Diesel's 7th birthday party in the hospital with Brinley watching through a window, since she can't be around people. 

While we do celebrate our continued good news and Ava's brave spirit and body which is defeating this disease, we do so humbly while we remember those who do not get to celebrate.
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Our family is so thankful for each of you that have prayed for us, those who have supported us in varied ways, and for each of you that have held us in the light.  We are so grateful.

I'll write more later in the week with an update on Ava's recovery.

Surgery and Recovery

The above photo shows Ava right before her surgery on Friday morning.  She was anxious, but still smiling.  As usual, she did an amazing job stating her main feeling: fear.

Holly, Big Bo, and I had a harder time putting on our happy faces.  My emotions were always right behind my eyes as we waited for for the surgery to be completed.  The typical procedure includes hourly updates, for which we were so grateful - even if the call just said, "she's doing great!"

After several hours, the surgeon came in to talk to us.  She informed us that everything went great.  Beatrice the Rude Tumor was out, but they had to remove her right ovary since it was indistinguishable from the tumor.  Additionally, they were unable to access the problematic lymph node, so we were told to expect 2-3 more rounds of chemo to make sure we are in the clear.

Waking up from anesthesia was very rough and that kind of set the stage for the next 36 hours.  Understandably, she was in a lot of pain and felt extremely nauseous.  She was so miserable during those following hours that I felt that instinct to just ask the Drs to just knock her out with pain meds, which of course is not the right thing to do.  (Just being honest.)

Ava slept very little on Friday night, and Saturday was even worse, as she was completely alert and in so much pain.  If she wasn't hurting, she felt so, so sick.  Additionally, there were a lot of unpleasant sensory issues which did not subside after her epidural and catheter were removed (as we had hoped).  It was a very hard day.  I think that's all I want to say about that.

Saturday night she turned a corner, and as she talked to her brother and sister via Facetime, she got very silly and happy (see photo below).  It was the first sign that she was coming back to herself.  Morphine may have been involved.

Sunday morning started out poorly, but after the necessary meds, she was able to get up and walk around our floor!  The surgeons cleared her for discharge after assessing if she met all the criteria and we were back at Tri Delta by 1 pm.

Her sassiness has returned and she is clearly on the road to being fully herself again, in addition to being well.

All of this feels just a tad bit surreal and I don't yet feel like I have the right words to wrap around it.  Perhaps this experience is meant to be held closely by those in the story, or maybe someday in the future I'll have the words I need to adequately portray the events of the weekend, and all of this journey with cancer in its entirety.

Ava is a fighter - she is fierce and she is brave and we are past a major hurtle to beating this thing.

Please pray for her continued recovery.  We are so thankful for all of you.