It’s late and I need to sleep but first I need to process… I will probably be repeating myself a lot so bear with me- 
 one of the things I noticed today was how fast the team moves. How quickly the word spreads through the unit.  Everyone - from the Drs to the nurse managers to the charge nurse to each of the individual nurses to the techs. I also noticed how extra kind and caring everyone is- every interaction is gentle and breathes support. I also noticed
how sad everyone is. I feel like we’re the only ones that are smiling… maybe because we have to for the children.  I know this is serious and scary. But we didn’t come this far through treatment to have an infection take her out of the game now!  That’s just not going to happen. It reminds me of the day she was diagnosed- you would’ve thought we were having a funeral right then and there. Sure we took our moments to fall apart initially, but then we had to put ourselves back together. And I just wanted to scream, ‘but she’s still here!!! we caught it in time. We’re actively doing something!’ And sometimes I think my resilient spirit gets me in trouble— because I’m not automatically thrown into the dark pit of despair and worst case scenarios. But that’s because I’ve worked so hard at training my mind. Ugh. None of this is a cakewalk. Speaking of cake-  before every surgery/sedation she gets her favorite and tonight she chose chocolate cake like usual! There was only a few bites, but that girl sure enjoyed it😍 then this mama enjoyed it even more just watching her!  

On the way to the hospital Wednesday night, Jake and I found ourselves doing something we’ve learned to do over and over again throughout this journey: counting our blessings.

Not because this is easy (because this stinks!)
Not because we’re pretending everything is okay (because right now there are moments I could totally just freak out and unravel because I worry   that we’re  never gonna make it to the finish line😭😭) 
But because there is always something to be grateful for, even in the middle of the hard.

We talked about how grateful we are that we made it this far through treatment without a line infection. Sixteen months with that Broviac is no small thing. We talked about how thankful we are that we’re only an hour from the hospital.  We talked about Trace and the incredible people who love him so well. The peace that comes from knowing he’s safe, cared for, and surrounded by people we trust is a gift I can never fully put into words. We talked about how fortunate we are to have doctors we trust. People who care deeply about our little girl and carry the weight of these decisions alongside us.

We had finally let ourselves exhale and soak in the relief of finishing chemo and immunotherapy only to be thrown full force back into scary  breath holding  moments. 

We both said that when we get to the point of her ringing the bell- we are going to celebrate so big! 
But if I’m being honest, right now  it still feels a little out of reach.

After everything we’ve walked through, there are moments when it feels hard to imagine actually getting to ringing the bell. Hard to picture a day when we’re not waiting on labs, scans, procedures, cultures, medications, surgeries, or the next unexpected turn.

Will it really happen?
Will we really get to that day?😰

I think that’s one of the hardest parts of living on this roller coaster/hamster wheel.  The finish line can feel so far away that it almost starts to feel imaginary. Like we’re permanently stuck on this roller coaster (and I really hate heights!) 

But then I remember how many times we wondered if we’d make it to the next milestone.

The next round.
The next scan.
The next surgery.
The next transplant.
The next holiday.
The next birthday in the family. 

And somehow, by the grace of God, here we are.

So today we’re  holding both things at the same time:

The reality that this is hard. It really hit us tonight😭💔
And the hope that one day we will be standing  on the outside with only memories from
The inside.  And when that day comes, we’re going to celebrate bigger than we ever thought possible. 💛🌈🦩

I asked the doctor if she is relieved that this is not a staph  infection. She said no- she is not relieved, that A staph infection is certainly serious, especially in an immunocompromised child, but infectious disease doctors see staph all the time. They know exactly what it looks like, how it behaves, and often have a very established treatment pathway.
Its more uncommon organisms that take several days to grow in culture and the waiting is so hard on the body and can be more challenging because:

 • They are less common, so it takes longer to identify exactly what they are.
 • They can be slower growing, which means there is a longer period of uncertainty while the lab waits for enough growth to identify the organism.
 • Some require more specialized antibiotics or a longer treatment course.
 • They may be more likely to cling to central lines, which is one reason the team is moving forward with removing the Broviac.

Tonight Paula, the NP was in. She’s so thorough and really good at what she does.  I asked her if there is a chance that the cultures would come back clean once we take the Broviac out? She said there’s a possibility.  And that  is what we’re praying for!  

She explained it better that- they are putting a temporary IV in for a few days. Then the PICC team will come and have to poke her because lab draws cannot be done through the IV. That right there makes me cry.  This child goes to her so much every single day and how well I remember one of those first days she was poked 13 times😭😭 it’s too much for an adult!  As soon as we have a few days of clear cultures, the will install a PICC line through her arm that we will be able to access and do everything we need to through it.   

Today she’s been so so brave! Her sweetness even when she’s hurting and has been through something traumatic takes a grown person to their knees. In her raspy voice with tears streaming down her cheeks she will still say please and thank you 😭 you dear sweet girl💗

They got the IV site in her left arm so she was able to sit up and color today. But it’s so painful to access.  She tries so hard not to cry. 

I can’t believe how well she’s adapting to her new temporary hardware! She seems so grown up- compared to a year ago. She handles the curveballs differently . She was so brave and. It hysterical at all when they came to do an echocardiogram of her heart. They’re concerned the infection is in her heart since her broviac catheter went straight into her heart.  We can reason just a little bit more with her and she trusts us. She also feels a lot better than she did a year ago when we would go to the OR on a regular basis and do these tests regularly. 

She is so happy to not have a broviac! A few hours after she woke up, she wanted to FaceTime Trace because she was sure he would be so happy that she doesn’t have it anymore! The first thing she said was ‘now I can go down a water slide!’  ‘No more dressing changes??’ Her eyes were so big In disbelief. (We haven’t told her yet about a PICC line.) 

Last evening we were reading Through the messages that you sent and we felt so surrounded and carried by love and prayers!! Your support means everything to us! We read every single message and treasure each one as though we were face to face! So thank you for caring  and taking the time to message us and love and encourage us. We’re so grateful for each of you! 💛