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.

A Fun Weekend and a Return

*Photo by David McFadzean

This weekend we went to Uncle Toby's wedding in ATL, and we are so excited that the kids have an Aunt Janine now!  Ava was thrilled with her dress for the wedding and had a great time.

The week preceding the wedding was a little bit stressful, as all five of us passed around a cold.  We were especially worried about Ava - mostly her immune system fighting off the cold, but also we were concerned that she wouldn't be able to attend the wedding, which our Drs actually scheduled chemo around!  She ended up feeling bad for two days before the wedding and was then fine on the day of, so it was a great time for her.  Since she missed our summer trips to see family, it was nice for her to get to see some of those people.  Ava, Bo, and Lily had a blast dancing and talking to our friends and new family members!  I am writing about all of this, because it kindof felt normal - it was an event for our family and it felt really good to all be together and in community to celebrate.

We drove home from ATL on Sunday, did laundry and packed, and sent Holly, Ava, and Big Bo on their way to Memphis the next day.  They arrived yesterday evening at Tri Delta, exhausted and disoriented.  I can't imagine what it feels like to be back in that space...though I will find out on Thursday.

Today and the rest of the week are filled with various appointments: labs today, psychology and school and other things on the next days, and some gaps throughout.

We are all anxious about surgery on Friday and Ava is experiencing the most anxiety.  The trauma of all this medical stuff is revealing itself in this form.  Normalizing her fears helps some, but we would also appreciate prayers on this subject.

There are a lot of unknowns regarding surgery and when Holly, Ava, and Big Bo will be returning home.  We know they'll be removing what is left of Beatrice, but there might some other parts which are effected by the tumor.  We don't know how long recovery will be, if they'll do a round of chemo while they're there, and how long they'll be in Memphis this time.

We will keep you all - our support community - updated as we know more.  Thank you for everything.

**Updated Memphis address available in right sidebar