Urgent Surgery update 
May 27
On Wednesday, we were discharged at noon and celebrated the massive milestone of completing chemo and immunotherapy! Three east personnel lined the hallways and our family made our final exit with a bubble shower and confetti parade! 

Avry had spiked a fever on Tuesday night and through the night. Wednesday morning it was a question on whether or not we should go home, but it was safe to assume that the fever was from the immunotherapy infusion and not that she was dealing with an infection. They took cultures on Tuesday night and again on Wednesday morning and when we left the hospital, nothing was growing on those cultures.

We weren’t even home for five hours and we got a call from the doctor saying come to the hospital ASAP that there is something growing from the cultures and it resembles a staph infection.  We ask if we could wait until the morning to come in, but they assured us it is emergent and to go in through the emergency room and we would be readmitted into the hospital to begin high dose antibiotics ASAP. 
 
We’ve finally allowed ourselves to begin to breathe and to fully feel and soak up the fact that we had reached this milestone… only to be thrown straight back into a breath, holding situation. And that right there is our story with pediatric cancer in a nutshell. You can be rejoicing in the morning and celebrating victory and a few hours later- the tables can drastically change. 

It’s not that they missed something. It’s simply that it takes 24 to 48 hours for the culture to grow anything if they’re going to grow anything. And it had hit that 24 hour mark and that’s when they found something.

This wasn’t just a small pinch. This was a full on gut punch to have to go back.  For the first time in over 16 months, I had fully unpacked our hospital totes.  

Avry had exclaimed over and over last hospital stay/last hospital day to everyone she met in the hospital. So you can imagine how heartbroken she was to go back.

We promised our golf cart ride, so we jumped on the golf cart and went for a tiny ride and then hit the road. We dropped Trace off at Gabe’s so Jake and I could both be in the hospital. 

We had the sweetest ride to the hospital. Avry asked for her special playlist and sang along to all of her favorite songs with her window open so she could feel the breeze and she kept exclaiming over the flowers and the sunshine! 

Jake kept reminding me that this does not cancel out the milestone that we celebrated!!

Avry was feeling good as she was  on a lot of meds to keep her comfortable.

Once in the ER, we started to see her condition decline significantly as her meds were running out. By the time we got to 3E around 1:30, 
She wasn’t stable and was in critical condition. She was hypotensive and tachycardic and her temperature was over 104. The infection  was pure evil.

Poor baby was so miserable…

Around 4:30 they did a last ditch effort before calling in the big guns and it worked and we watched her stabilize over the next hour. The doctor and the nurse stayed close and Jake and I finally went to sleep and promised to wake us up if she was to change in anyway. 

We were up by eight and we could see a big difference in her. She didn’t have any energy and didn’t really want to sit up and do much but she was happy to lay in her bed and color on her tablet.  

I think we’ve gotten so well at just adapting to whatever is right in front of us that sometimes we don’t even always feel the full weight of what we’re facing in the moment. 3East is pretty long faced and somber towards the situation. 

Todays  Report from infectious disease and our oncology team:

What they’re telling us right now is that they’ve identified bacteria growing in the blood cultures, and at this point we know a few important clues:

* It is gram positive
* It is rod shaped (bacillus)
* It is growing from both lumens of the Broviac
* It appears to be a slower-growing or more unusual organism, which is why identification takes longer

Because it is showing up in both lumens, this makes the team more concerned that this represents a true bloodstream infection/line infection rather than just a contaminant from the skin or collection process. A contaminant is more likely to appear inconsistently or only in one sample, whereas growth in both lumens raises concern that the bacteria is truly present within the line or bloodstream itself.

The next major step is identifying:

* What exact bacteria it is (speciation)
* Which antibiotics it responds to best (sensitivities)

That process can take a few days, especially with slower-growing organisms.

Right now they are doing exactly what they should by treating aggressively with broad-spectrum antibiotics while they wait for the organism’s “name.” Once the lab fully identifies it, they can narrow treatment and know:

* which antibiotic is most effective,
* how long treatment needs to last,
* whether the Broviac itself is infected,
* and whether the line can stay or may eventually need to be removed.

All in all it was a good day. Her vitals are stable, but they would not consider her overall wellness stable. 

Friday May 29

Avry slept well. Jake went home for the night so at least one of us could sleep good. He plans to go to work for the next two days because he hasn’t been working over the past week so that we could share the load in the hospital as it was her last hospital stay. The plan is for Jake and Trace to go to work Friday and Saturday. 

This morning I talked to Jake and he decided to not go to work because it was a few hours away and he just felt like the smart thing would be to stay nearby. 

(looking back I’m so grateful!!)

I am fighting a nasty viral bug and don’t feel well at all. So he came in this afternoon so I could have a good long nap. He brought Trace in and that cheered up Avry so much. Trace really does not like being in the hospital at all, but I explained to Trace that his presence and his love heals his sister. And that seemed to help his restlessness. She just doesn’t want to do a minute without her brother especially when we’re in the hospital.

Avry seems to be doing so well today!! but I have to remember if we took her off her meds how fast she would decline again. It Can really mess with your mind.

Today the report from oncology and infectious disease: 1:30 PM

 • The blood cultures from the 26th and 27th are still positive, which means bacteria are continuing to be detected in the bloodstream.
 • They still don’t have the exact organism identified, so they’re appropriately keeping Avry on broad-spectrum antibiotics while the lab continues to grow and identify it.
 • If the culture from the 28th is also positive, the team may need to seriously consider whether the Broviac is serving as the source of the infection. When blood cultures remain persistently positive despite antibiotics, central lines sometimes need to be removed because bacteria can form a protective biofilm on the catheter.
 • What everyone is hoping for now is a negative blood culture. Once cultures become negative, the team typically starts counting from that point.
 • When they say they need cultures to be negative for 48 hours, they’re looking for evidence that the bloodstream infection has truly cleared.
 • The name of the organism matters a lot because different bacteria require different treatment lengths. Some line-associated infections may require 7–14 days of antibiotics, while others require longer courses, especially if the line is retained or if the organism is one that likes to stick to catheters.

The encouraging part is that they’re already treating aggressively while waiting for the final identification. Right now, the biggest unanswered questions are:

 1. What organism is it?
 2. Will the 28th culture remain positive or turn negative?
 3. Can the Broviac be safely salvaged, or will it need to be removed?

We’re  in one of the hardest parts of infectious disease management right now—the waiting. The culture identification often provides much more clarity about the expected course and whether the line can stay.

Praying that the next update brings a name, a clear treatment plan, and most importantly, negative cultures. 💛🌈


Report from 6:30 PM

 We just got the report that the blood cultures from the 28th are positive too.

Which means the Broviac has to come out.

Infectious Disease and Surgery were just here, and we are now making plans to get her into surgery as soon as a surgeon is available. Most likely sometime during the night.

I knew this was a possibility. We all did. But somehow it still feels like a punch to the gut.

This Broviac has been with us through everything.

Through chemotherapy.
Through surgeries.
Through two stem cell transplants.
Through blood transfusions, IV medications, fluids, endless labs, and countless moments when we desperately needed quick access to save her from another crisis.

For more than 16 months, this little line has been one of the things helping keep our girl alive.

It has become such a part of our daily life that it’s hard to imagine not taking care of it. 

The team is pretty bummed too. We aren’t finished with treatment yet. We still rely on central access for medications, fluids, labs, and everything that comes with cancer treatment. Everyone was hoping we could keep this Broviac until  December.

But if it’s the source of the infection, then removing it is the safest thing we can do.

I’ve reiterated several times to the team today that I am incredibly grateful we made it this far with this Broviac.

Sixteen months.

Sixteen months without needing it replaced.
Sixteen months without a line infection.
Sixteen months of chemo, surgeries, transplants, blood products, medications, labs, and everything else this journey has demanded.

That is not a small win!! 

So even though this isn’t what any of us wanted, were grateful for how far this little catheter carried us. It served its purpose faithfully. It got us through some of the hardest days of our lives.

The current plan is to remove the Broviac and treat the infection aggressively. They will not place another Broviac right  because we need to completely clear the infection first.

For now, they are planning to place a temporary IV in her arm. The problem is that those IVs only last a few days before they need to be replaced due to the amount of usage as well as the antibiotic is very tough on these little veins. 

Long term, we will likely be looking at a PICC line once it is safe to do so.

The reality is that Avry still needs daily blood draws, IV medications, fluids, blood cultures, and ongoing treatment. As much as we would love to be done with central lines forever, we’re simply not there yet.

And if you’ve ever met Avry, you know that the thought of being poked over and over and over again every single day is not going to go over very well for anyone involved. Honestly, none of us want that for her.

So over the next several days, the team will be working to find the best solution—one that clears the infection, keeps her safe, and allows her to continue receiving the care she still needs.

It’s strange how attached you become to something that represents so much suffering. Yet somehow this little line also represents survival. It carried the medications that fought for her life. It made the impossible possible. It helped get us here.

So tonight we’re  holding a lot of emotions.

Grateful we found the infection.
Heartbroken to lose something that has carried us this far.
Anxious about surgery.
Thankful for a team moving quickly.
And once again trusting God with the next step, even when it’s not the step I would have chosen.

For now, Avry is NPO and we wait for the call that it’s time to head to the OR.

One more hurdle.
One more mountain.
One more reminder that this journey is not quite over yet.

But also one more reminder of just how far we’ve come.

Tonight, that step is surgery.

Tomorrow, we’ll figure out the rest.

While there are definitely emotions that come with removing a Broviac that has carried us through the last 16 months, this is a life-saving decision. The infection has to come first, and our feelings are honestly irrelevant compared to keeping Avry safe.

Please hold us in prayer tonight.

Pray that the surgery goes smoothly, with minimal bleeding and no complications. Pray for steady hands, clear minds, and wisdom for the surgeon, anesthesiologist, nurses, techs, and every person involved in Avry’s care.

Pray that the infection is removed with the Broviac and that her little body responds well to treatment.

Pray for peace over Avry. That she would remain calm, feel safe, and know she is deeply loved through every step of this process. Pray that fear would stay far away and that she would be surrounded by comfort and courage.

Pray for Jake and me as we walk through another unexpected turn in this journey. Pray for strength when we’re tired, peace when we’re anxious, and grace for whatever the next few days bring.

Most of all, pray that God’s presence would fill that operating room tonight. That He would guide every decision, protect our girl, and continue carrying her through this battle just as He has so many times before.

Thank you for standing with us, believing with us, and praying for our sweet girl. We feel every prayer. 💛🌈

Update 7:15 PM 

Surgeon was just in to say surgery is scheduled for 7:00 AM.

Please pray for a medically boring night, peaceful rest, and that Avry isn’t too hungry since she can’t eat or drink before surgery.

Thank you for loving our girl and covering her in prayer. 💛🌈