9-2-26 A change in Avry Jo

9-2-26 A change in Avry Jo 

I have been wanting to write an update on the Bell ringing ceremony and her party and all the things but honestly, my mind has just been consumed a bit.

Today Dr Wells squeezed in Avry first thing this morning to see her… let me back up a week and a half ago. We went to the valley with Jake while he worked down there. At the end of the week we checked out of our Airbnb a day early and headed for home because we were all sick.  We have not been sick since Avry diagnosis.🙌 and I fully expected that once our bodies started finding that safe spot again and we begin to truly relax and let our guard down, most likely we would pick something up… well we certainly did! I thought we had just eaten something bad but then came along the achiness and fever… Jake and Trace and I were all down, but Avry was still going strong for a day. And then she got hit hard with fever. Ugh 

Neither of us panicked. Even though we weren’t home yet. I messaged another neuroblastoma mama just to ease my mind. 

I was reminded how long ago it felt that I’d had to hold her because she was sick. I  realized how active she’s become in the past 2 months! I wasn’t sad about the opportunity to hold  her but also just wanted he to feel

Better! She was so sore and achey and quit eating. She vomited a few times…our reflexes still work incredibly well at this 🙌 Avry held in her tubie and I caught everything .

We were pleasantly surprised at how fast she ‘turned the corner.’ I expected it to drag out longer than the rest of us but it lasted the same 3 days. 

We were so grateful that we all

Got to take Trace to school the first day! 🙌 last year we were knee deep in 1st transplant and his life was pure chaos. 

Avry has been fever free for 24 hours but woke up completely confused. She kept asking ‘mom are you there? Mom I cant see you.’ I kept my hand on her and she’d ask ‘mom is that your hand?’  She cried and was disoriented ‘I just want to go home. This isn’t our home.’    Poor girl was so afraid. She said when she closed her eyes it was all sparkly. 

I messaged Jake— is there in fact a tumor on the skull that’s pushing down on the brain?? 

She napped and woke up more herself. She told me later she was so lost and couldn’t find her way home…

Jake was gone for the rest of the week. She seemed so weak and fragile.  She was pale and dark under her eyes. By 10AM she was ready for a nap. Which was so different than the week before- I really wondered if she was outgrowing her naps.   I kept reminding myself that it’s just taking her longer to be completely back to what she was before she got sick.  

She was so irritable over the smallest things and would have a complete meltdown down- it took me right back to during immunotherapy. When she felt so awful but refused to rest and was so determined to play but didn’t have the stamina. 

She was ready for bed by 7:00 every night. She wouldn’t wake up happy- like she has ever since we came home from the hospital in June. There seemed to be a shift and it wasn’t changing. She’d have her happy moments but she just seemed frail. She refused to eat anything other than buttered noodles.  I was so glad I can give her feedings overnight! She would get off the couch to play a few minutes but then would lay back down.  I could entertain her for about an hour and she’d put her best foot forward until she was just done and then she’d cry herself to sleep while I held her…

She has a ‘bruise’ on her upper eye area….

But she’s cancer free! So it just must be an imbalance after being sick. I knew there’s no chance of anemia but why so pale??  Just 4.5 weeks ago scans were clear.

And yet she was running on that cruise a week before she was diagnosed…

But this is freakishly like the week before she was diagnosed. ‘Don’t go there. I’m sure it’s nothing. Just ride the wave.’

Monday morning she was too tired to do her preschool book that she normally whips thro. She just wanted to be held…I held her most of the day and read to her in between her naps. The sparkle is gone from her eyes.  I messaged the Dr. 

Tuesday was much the same and her eye is worse.  (My mind goes to relapse when the tumor is pushing on the optic nerve and it does strange things to the eyes- one of the main signs).  Jake came home from work early noon and I was holding her while she slept. He was very concerned! I’m told him- I’m sure it’s just an imbalance trying to convince us both of that. We both admitted it’s not consuming us until we stop and think about the drastic change we’ve seen in her over the past 2 weeks- and when we look back at pictures, the difference and it’s really

Hard to not panic. 

Jake called Dr Wells and he said to come in ASAP in the morning. He said he looked at those scans several times and it’s clean! That he’s probably not as worried as we are but she needs to be seen; that we’re not crying wolf. 

Dr Wells did a full blood panel and everything came back clear. Then he did  a very special test- and we’re waiting to hear the results back from that. 

Avry sat up and colored in the clinic🙌 what???!! She hasn’t done that in 2 weeks! 

Dr Wells said it’s neuroblastoma- there’s no telling where it goes from here. But also, this is part of the after. There’s ups and downs. 

 (What??? Why?? This bad tho?? When she was so so good!!) The chemistry test will be a good indicator as to where we’re at. It tests so many things- normally you don’t see a secondary cancer until the child is in remission a few years.  Some of the things he’s looking at is her internal organ performance post transplant- it’s very important to keep tabs on. (We know of a little girl with multiple organ failure post cancer treatment- she’s doing well now after more transplants 🙌)  he’s also watching her iron levels (they can get too high after so many blood transfusions) as well as her thyroid function. 

He said there’s no indication to worry about relapse right now. But that the chemistry test will tell us more. He’s more concerned about all these other options it could be. He said there’s just NO explanation as to the disorientation, fatigue, refusal to eat.  He encouraged us to go home and love her and live! 

But how?? When she’s NOT herself. You don’t just stop playing and eating and running and laughing and being your sassy self!  

We really expected her to need an infusion and maybe phlebotomy…like maybe her electrolytes are way off? Maybe a simple tweak- that would be best case scenario. 

Dr Wells reported that the chemistry test came back moderately elevated. What does that mean???  He said this number doesn’t alter or concern him in terms of relapse. He said to keep them posted on how she continues to be.  It’s mid- not high  and not low but also don’t want it to go higher. 

Ok so now what?? I want to fix this! We want her back!!! We had such a fun taste of our running, playing, singing  little girl! 

Dr wells told us - he is willing to rescan if that is what we want. Jake assured him if it were up to us, we’d never rescan again because it’s so stressful and we hate putting her through that but also since there would be nothing  more to do in terms of life saving care- why would you want to know? Because it goes so fast.  And Dr Wells was so understanding and supportive. 

I told Jake if there’s one more curveball, one more traumatic event—-don’t be surprised if I go nonverbal!!  But then again maybe he’d not hate that quiet world!! (He assured me it would be a world he doesn’t wish to exist in)   That’s not to mock nonverbal communication; IM JUST DONE!!!!! I want off the rollercoaster!!! I want out of  the program ‘whatever doesn’t kill you makes you stronger!’  Where does this stop? When does it go away??? I thought we would have a few months before next scans to breathe and live and laugh a lot! I thought it was DONE! I thought we were in the clear!! 

This year has been CRAZY.  First it was- the ‘easy’ part of treatment. Which was complication after complication; which ended in infection and then finally were done 🙌 nope- a false positive scan that freaked the ever living daylights out of us. 

Someone asked Jake today- how do you get up and go to work everyday? How do you keep living with this always having that over your  head? How do you live and laugh? How do you do life?? 

To which Jake answered- what choice do I have? Sit and home and go broke and not provide for my family? We get one chance  at life and I’m not about to let cancer take our whole family down with it. So we get up and we smile and we keep believing and keep doing the next right thing for our family.  All the while keeping in the back of our minds- it’s still cancer and not another second is promised.  And for whatever reason this is the path we’re asked to walk and we’re going to walk it as best we possibly can.  God has always provided in every way we’ve needed; and He will

Continue. 

We would feel better about this  if we saw her getting better and getting back to who we saw a month ago!

Please don’t come at me with snake oils, mystery patches, detox foot stickers, moon water, or something that worked for your aunt’s mother’s cat’s sister’s neighbor who had the exact same problem and is now somehow tan, skinny, debt-free, sleeping 9 hours a night, and selling it on Facebook ofc unless your child also had cancer. 

It’s another reminder no matter how bad it is, or was- you look back and there were things you take for granted without even realizing it. And even in the middle of your hard today, there are things, so many things to find gratitude for, especially in the hard. It’s not ignoring the hard- because all that is doing is gaslighting yourself into believing a lie. Rather it’s honoring your hard, along with finding gratitude for exactly what it is. I was reminded today out back when Avry was diagnosed and they told us it was all through her bone marrow and lymph nodes- when I asked about the skull and her brain- Dr Wells offered to do an MRI of her brain for my own peace of mind. How incredibly generous and thoughtful and supportive! How relieved and grateful I was that it wasn’t in her brain because I can’t think of anything more sad,  that my heart just breaks for all the mamas holding their babies through that. 

September is Childhood Cancer Awareness Month—a month dedicated to the children fighting cancer, the children who survived it, the children living with what treatment left behind, and the children who should still be here, but aren’t. What I’m realizing more and more is that childhood cancer never really goes away. Even when treatment ends, even when the scans are clear, even when you finally get to ring the bell. Cancer moves into your family, rearranges everything, and somehow becomes woven into who you are. You learn to live again. You laugh again. You make plans again. You are unbelievably grateful. But you never go back to who you were before you knew this world existed. Once childhood cancer becomes part of your family’s story, it never completely leaves. And that’s why we talk about it this month—not because we want anyone to feel sorry for us, but because once you’ve seen this world, you can’t unsee it. So this September, I simply ask you to notice. Notice the gold ribbons. Read the stories. Say their names. Pray for the families still in the fight and the families learning to live with an empty chair. Allow yourself to care, even when the stories are hard to hear. Let these children matter to you. Let their courage, their joy, their families, and their stories reach you—because if you allow yourself to truly see them and care about them, they have a way of changing you. Childhood cancer may never become part of your family’s story, but these children can become part of your heart. And you just might find that knowing them changes your life, too. 💛

Ps. Avry Jo's photo ⬇️will hang in the national mall in Washington DC for Curefest for Childhood Cancer September 18-20. She gets to be on the 'fighter/survivor" wall 😭🙌
too many friends have joined the

'Angel' wall this year