Updated Scans 

January 23, 2026

Yesterday we were at the hospital most of the day. We had planned for Avry to get her 10 month scans done before we go into post consolidation treatment over the next six months. They were getting ready to inject the dye and asked me if she had her SSKI drops, which is a special medicine to protect her organs. -No she in fact did not have them! It totally slipped my mind to ask for this prescription and obviously was a complete oversight on the oncologist’s  part as well.  The dye for the MIBG scan cannot be given without the special pre-medicine. These drops are formulated, especially for our cancer warrior and flown in to Dell Childrens, Medical Center, so it wasn’t like we could just go around the corner to a Walgreens to get the medicine on. They usually have to order these drops a week in advance as they need to be administered, pre-and post MIBG scans.  

We learned very quickly that our Thursday and Friday plans had quickly changed and we will not be getting her 10 months scans this week. 

How in the world was this missed?? This all of a sudden complicates everything. How will we proceed with the next round of treatment? And when? Our ever changing ‘schedule’ as our lives revolve around kicking cancer’s ugly butt…it’s exhausting, and 1000% out of our control- all of it. 

Now -I could be upset at myself and blame myself for not catching this or I could be super frustrated at the doctor because this is his job. How did he miss this??  

Here’s what happened internally:: 

We’ve become so confident in God's timing that when inconveniences to (our) man's plans happen,

We don't see them as interruptions. 

We feel them as protection. I felt a hug from God Himself-reminding me that He has the best plan for us, especially here.

The best way I can describe it is this-when previously It  would be easier to get frustrated, angry and thrown off by the inconvenience, or maybe even just absentmindedly shrugged this thought ‘ everything for a reason’…

It’s so much more than that !! It’s meaningful and comforting both simultaneously. It means we’re not in control and a reminder of who is.

I now picture God just winking at me... sliding His arm of protection around my shoulders, smiling, and saying, 'Hey girl, I've got something better in mind.'

Thank you Cancer for making this not just head knowledge-but the way our hearts beat! 

I'm not talking about the small stuff. Not the everyday frustrations. I'm talking about the big, life-altering disruptions-the ones that ripple through your entire life and change you forever.

That kind of peace doesn't come naturally. It's formed.

It's the soul-shift that comes from surviving storms you weren't

-humanly speaking- meant to survive

“ But How can you have so much peace and gratitude during such an unthinkable season??” 

And that is how we live  out the power of ‘the pause’ and  finding gratitude in exactly what it is!  You can always imagine something better than what it is. Likewise, you can always imagine something much worse than what it is. And so you pause and honor, exactly what it is. When you imagine something worse than what it is,  all of a sudden your situation feels pretty great. 

So often it’s easier to think of all the ways  this could and should  be so much better/different  as we lay in the corner in a fetal position with a blanket over our heads.  But that leaves no room for God  to position you for greatness in His Kingdom.  That cancels out an opportunity for personal growth and doesn’t allow others to feel Gods face shining on them by your response. Thus missing the whole point of  why any of us were called to this earth in the beginning.  If I’m learning anything- none of this life is about us.  (we’re all really good about making it about us, and our goals, and our mission, and our agenda for OUR life and forget that he breathed life into our dusty forms) 

It’s all about God putting us into position for opportunities to honor and glorify him. 

This Gratitude is not something we feel but rather something we do that can  produce an even richer, and more abundant life. Even though It was a super inconvenience. We had done our part to make these two days go smoothly and prepare mentally and emotionally for them. We had planned our days, the work schedule  around the next 2 weeks… gratitude is a choice but only till you view it as such, then  it truly has the power to change your life and enrich the lives of those you touch.  

I quickly called the clinic to arrange for Avry’s broviac dressing to be changed- while we were still in the hospital since the plan was for that to be done post op. They were able to fit us in and we had an impromptu meeting with the nurse practitioner. She had printed out schedules for us for the next month so we know a little bit what to expect as far as inpatient treatments.  (Obviously everything is postponed until we can get her scans completed.) Dr Wells told us a week ago- the clock is ticking and it’s time to get on with the next phase of treatment. Time is of importance. 

Dr Katelyn went over the drugs and side affects. They plan to give the immunotherapy drug at night over 9 hours and up to 20 hours depending on how Avry’s body responds. 

Naxitamab was the antibody  that Avry  got previously. (This is a newer  generation anti-GD2 and Often used in relapsed/refractory neuroblastoma. Aka it’s pulling out all the stops and pulling out the big guns) 

She was sedated three times a week for this drug because of the extreme pain that it causes. So not only did we have the sedation part we also had to manage the pain and unstable stats.  She had 15 days of this. 

They will be using  dinutuximab. 

But hold on let’s first of all talk about what immunotherapy is-

Immunotherapy doesn’t directly kill cancer the way chemo does.

Instead, it teaches the child’s immune system how to recognize and attack cancer cells. 

Think of it like this:

Chemo = carpet bombing

Immunotherapy = target training 🎯

It trains the immune system to see the cancer as an enemy and go after it.

Neuroblastoma cells have a marker on them called GD2

Dinutuximab is an antibody that locks onto GD2 like a GPS tracker.

Once it attaches:

• The immune system recognizes the cancer cell

• The immune system attacks it

• The body helps destroy it

So instead of just poisoning cancer cells, it recruits the immune system to fight. (in the past,  immunotherapy hasn’t always been used and or parents opt out of immunotherapy because it is so incredibly harsh. But just the past 4 to 5 years, studies  show a much less relapse percentage if immunotherapy is combined with chemo during front line and post consolidation treatment) 🙏🙏🙏

After chemo, surgery, transplant, radiation, etc., there can still be microscopic cancer cells hiding in the body. Since cancer cells divide and multiply faster than any cell in the body-it’s why we continue to go after them with so much vengeance! 

Dinutuximab is used to:

• clean up residual disease

• prevent relapse

• strengthen immune surveillance

• train the immune system long-term

Why it’s so hard on their little bodies is Because GD2 isn’t only hard on cancer cells — it’s also on nerve fibers 😔

That’s why dinutuximab causes:

• nerve pain

• blood pressure changes

• fevers

• inflammation

• discomfort

• ICU-level monitoring sometimes

(It’s awful) 

It’s not because it’s “bad medicine” — it’s because it’s powerful immune activation.

It’s the immune system going into full combat mode.

Okay here’s a simple breakdown for those of you who just skimmed over it while disassociating😉

It teaches her immune system how to protect her body long after treatment ends.

This isn’t just treatment — it’s immune memory.

It’s teaching her body how to stand guard over her future. 

We drove to Austin to the outpatient pharmacy and picked up the SSKI drops as well as the premeds we need to start today for Avry’s chemo and immunotherapy!  It’s getting real.  You just can’t help but feel the sinking feeling go the whole way down to the bottom of your boots knowing this week, we’re going to see a decline in our bouncy bubbly little rollerskating fairy!  But there is way too much joy to let that rule the week. 

And yes-with her daddy’s help she rollerskates all over the house! I never imagined she would be strong enough! Right after they installed all of her hardware in her body-I was afraid to take her home and leave the hospital because all I could see Was who she used to be running around-and I could imagine all of the tubies being yanked out. I learned very fast there was no chance of that as she was so sick. Running and playing was past tense for the past 10 months! 

Avry rarely walks anymore. She runs! Just like before cancer.  She has mastered going  up the steps all by herself and just yesterday she got up off the floor and sat down on the floor by herself!  These are huge milestones.  Her hair is coming in black and thick. (And yes, there’s a very high chance she will lose it again.) it’s so much fun having a little person be a busy, active little person in this house.  She runs and does little errands for me and asks to help with everything I do- she folds the socks and washcloths and put the groceries away and helps to unload the dishwasher, and sort the laundry and put the laundry in washer by herself! She loves  to turn up the music and sing as loud as she  can in the living room.  Someone sent her butterfly wings that she can wear and her  favorite thing is when we are all a family of butterflies!  When Jake leaves for work and Trace leaves for school, she usually cries and every time I convince her that they are not leaving forever and that they are coming back home because her family of four all together is what is most important to her. 

Jake has been so happy to get a few good weeks of work in. I love having him home, but it just feels right to have him back at work too. 

Trace has been practicing piano and baseball tryouts are this weekend. It was a good to have a few months off of the baseball schedule.  

This weekend of ice held slow happy memories of our family enjoying coziness and togetherness. It really was the perfect weekend before we head back into the hospital.

If all goes as planned, Thursday we will go into the hospital for her echocardiogram and to get

the dye injected for her MIBG scans. 

(An MIBG scan isn’t just a picture.

It’s a cancer activity detector.

It shows:

not just where tumors were —

but where cancer cells are still alive and active.

It’s how doctors know if treatment is working at a cellular level. Because high-risk Stage 4 neuroblastoma is a microscopic disease battle.

It’s not just about visible tumors —it’s about the invisible residual cells. MIBG is how they track that invisible war.) 

-MIBG scans

-bone marrow surgery 

-audiogram (to test her hearing)

-MRI 

-Broviac dressing change

-NG feeding tube change

Most likely this will be a 3 to 6 hour sedation. This is deep sedation. 

After which we will be admitted to begin round 6 chemo and immunotherapy! 

It will be a long day and Avrys body will endure much. 

1.5 weeks ago, Meg went home to her family to pick up obligations she had there.  It’s hard to believe that her time is up already. She had become a very real part of our family and we miss her very much!  The children bonded so well with her and she served us very well!  She will always be part of us-and her bedroom door will always be open and welcoming! So we are going to try to manage Round 6- between the 4 of us. Jake and I plan to take turns with one of us at home for the nights with Trace and get him after school in the morning. Part of me feels like we’re crazy to try this and the other part of me is overconfident that we can do this!  (It really just all depends how severe Avrys side affects are

If it’s manageable with just one parent. -but we really can’t afford to burn out as we still have a big journey ahead of us ) 

Thank you for standing with us 🤍 (we will send out a link for you to join us so keep Watch for that) 

PS.

Thank you to everyone who has sent personal checks and tangible love our way. There truly are no words to express our gratitude, appreciation, and the depth of humility we feel. We have never experienced anything this overwhelming in the most sacred way.

We recognize we cannot walk this road alone. The financial weight is real, the burden is heavy — and yet we know that God is bigger than all of it. So we pray blessing over every cent that has been given in generosity and obedience, and we ask God to multiply it with purpose and provision as we continue to fight for Avry’s life.

Your kindness and sacrifice is seen and felt.