June 2 update
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#miraclesforAvryJo
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#miraclesforAvryJo
June 2
Last night was the last Filgrastim shot post chemo!! 🙌
What a night!! Avrys IV hasn’t been working well and we needed to draw more labs as well as a trough to test the level of antibiotic circulating in the bloodstream. They tried to use the IV site but it was so painful and couldn’t draw back. This meant they had to Try at another site. It took an hour and a half of trying. Three different nurses tried and nothing 💔 Avry was so brave but it was extremely painful. She cried for the entire hour and a half. 💔 finally they called pharmacy and pharmacy said they can wait till the morning for the PICC team.
Avry snuggled so hard and we slept till 6:00 when they came to put numbing cream on her arm in prep for the PICC team.
At 8:00 the PICC team came. And even the experts with their ultrasound machine couldnt locate her veins. Ugh. They tried and tried and fished💔 They finally tried another site…
We cannot get this PICC line in soon enough so we can stop turning her into a human pincushion! I don’t know how much more I can take💔😭and in that moment I was filled with gratitude. Gratitude that it hurts me. Gratitude that I can feel with her and am in pain when she’s in pain. You have to be brave as a mother when you’re holding your baby girl and she’s screaming and you can’t fix it. But I’ve learned a long time ago is to just let the tears fall along side of her. Because we FIGHT TOGETHER.
They came from surgery at 8:00.
I told Avry it was the last time we need to poke her!! No more needles! I asked her if she’s sad she doesn’t have her Broviac tubies and she shook her head NO!! I explained that we need to put another line in her arm so that we no longer have to use a needle to get the blood and give her medicine. Initially, she was distressed. But she told me how much she hates the cream and hates the blue tourniquet. And wondered if I will be right beside her and if they will do it when she’s asleep?
We headed down in her white bed and waved to Odessa and Janessa on the way down.
Bryant- The guy that came to get us from surgery is one of the pre OP techs. He has been here with us since day 1. He reminds me so much of Eddi. A while back I had asked him what made him decide to be an OR tech? He had a Brain injury and spent 16 weeks in the hospital and that’s why he went into the medical field. Which explains his level of compassion 🫶
Once in pre op, Avry was so calm and relaxed. This is probably one of the biggest differences I see. She’s grown up so much and understands more and is a bit easier to reason with because she’s feeling so much better over all and it makes such a difference.
The anesthesia team is so so good ever since our experience in Dallas and giving us a straightforward plan on how to premedicate to minimize such a traumatic separation. I’m so grateful for this for both of us!
I really do not like to walk away from the OR and be separated alone. The weight is crushing. ..
I went to get a coffee.
Pro Tip:
When you're sitting outside the OR waiting for your baby girl, and you go to order a coffee, order it under her name.
Because a few minutes later, when they call out that your coffee is ready, you'll hear someone say your baby's name out loud. And for just a second, in a place where she's behind heavy doors and out of your sight, you'll hear her name echo through the room.
It's a small thing.
Maybe even a silly thing. But when you're a parent waiting for your child in surgery, you'll take every chance you can get to hear their name.
Even bonus if it's just written on a coffee cup.💛
While I was waiting, Dr Cohn came down to the waiting room. She was coming down to do a procedure and saw me so came over. What a welcome face! She hugged me so hard and told me she can’t believe we’re back. What a gut punch for them too! She said the oncology team is feeling the rawness of us being back the same day we were discharged for the final stay. But that when she stops and thinks about Avry- she said it’s in true Avry fashion! Nothing with her treatment has been standard or easy or straight forward. She can’t have a boring chart and has to go out with a bang!! I told Dr Cohn that 3East doesn’t know how to have fun without us and it’s time yall find your own entertainment at which she couldn’t stop laughing. 😂
She looked at me dead in the eye and asked me how I was doing… not my family, not Avry but me as the mom and caregiver. 😰 ❤️🩹 and I told her it’s been such a mind twist… for the first time I wonder if she will ever ring the bell?! We had a good hard cry together and she was so gentle, kind, and encouraging. Just that morning she had called her brother (Dr Mitchel) and told him she was so mad (something totally unrelated to Avry) and Dr. Mitchell told her he’s so mad- that Avry got an infection and has to be back in the hospital. Talk about Drs that really care! Wow! Dr Cohn was so bummed to not be at Avrys farewell parade. She was standing in the line and then had to quickly run back to the Clinic and by the time she got back to 3 East, the children and I had already gotten on the elevator, and Jake was running some things out to the car. Dr Cohn grabbed him and gave him such a tight squeeze and had a good cry. She was so sad to miss this but so happy for us! I told her we will make sure she knows when Avry will ring the bell and make sure she can be there for it.
There’s just a level of kindness and compassion that’s I’ve never experienced in my life before. In a big hospital I believe you would get lost in the shuffle a bit more easily according to our friends walking Through neuroblastoma elsewhere who have experienced differently than we have. I’m just so grateful all over again for our amazing team and thank God for placing us here with them! There is also something so healing about the validation, of hard this journey is and just sitting with us in the hard and that’s exactly what she did today🫶
I waited for what felt like so long… it was almost 2 hours until I got a notification saying ‘ my loved one is out of surgery and in the PACU.’ it went another almost half hour until they called me back to the PACU.
Mary was down in post op (she’s from the Clinic and always walks us across to the hospital for every admission). She came over to me and threw her arms around
Me. She said she just found out why we were here- I begged her to run back and check on Avry for me because she is a badge holder and can go further than I can. She went back and tried, but her badge didn’t get her through the PACU doors. So she went to the nurses station and said she needs to be through to see the VIP patient.😂 oh Mary!
About that time they called me- and I ran back to bay 12. Avry was crying for me and as soon as she saw me, she fell asleep with a smile on her face. We waited about another 30 minutes and headed back to 3East.
Avry woke up and was so happy her IV was no longer in her arm and that all the other bandages were removed. She wondered about the big tubie going in through her arm. I assured her she no longer has to get needles at which she cheered at! She wondered what the sign on the door meant and I explained that it meant no more needles!
She was so chill and so happy to just snuggle up close to me. She rested for a while but then sat up and was ready to play! She got out of bed all by herself and walked over to the recliner while I cleaned the room and put fresh linens on the bed. She’s not using her right arm at all- I’m guessing that that’s temporary as she adjusts to the PICC line. She was so excited to see Apples the Clown!
The Drs were in. Im so grateful they pushed for the PICC line! What a relief to not have her be pricked.
Drs report: now that Avry has a PICC line, they wouldn’t normally send the child home with antibiotics but because we are so familiar with the broviac and we were doing her dressing changes at home, they’re willing to teach us how to give the meds thro her PICC line.
The bacteria has finally been identified as Cellulosimicrobium cellulans. This is a rare organism, that even infectious disease is not familiar with this one. We are now waiting on the susceptibility testing, which will tell us exactly which antibiotics the bacteria is most sensitive to and which treatment will work best.
For now, Avry remains on high dose broad spectrum antibiotics while the lab continues testing. Once those results are back, the Infectious Disease team will know whether her current antibiotics are the best choice or if any adjustments need to be made.
We’re grateful to finally have a name, even if it’s one that’s so unfamiliar. Now we’re praying for favorable susceptibility results, continued negative cultures, and complete clearance of the infection. 💛 because then we can go home!
Last evening we went out of the room…I chose to ask for forgiveness rather than permission in this situation because it honestly felt like a gray area. She’s not running fever and now that we’re getting negative cultures, that would point towards us being allowed to leave the room. Avry wanted to go outside so Syd put the medicine on her wheelchair and we went out to the healing Gardens. Avry forgot fish food but I’ve noticed every time we start getting close. The fish comes swimming by! Last week, Jake said he’s sure the fish know Avry because of the way they all come to the edge! I know nothing about the personality of fish but it sure is cute!
It felt so good to break out of the room last evening and Avry has been waiting to get out there ever since.
Jake so kindly asked Miss Sofia to pop in on us this week so we’re not so alone all week long. She came this afternoon and what a welcome way to break up the day! She brought me probably the best taco I’ve had yet and some fun things for Avry to do. Avry was so happy to see her and chitchatted nonstop! Then we took Sofia along out to the healing gardens to feed the fish and we saw four turtles in the pond!! three of them were babies! I just don’t know what we would do without the healing gardens and I’m so grateful for what they have been for our family! Then we went to the main entrance and blew bubbles for a while and Avry played with the balls for probably half an hour.
We came back upstairs to do laundry and I ran to do the laundry while Avry hung out with the nurses at the nurses station. I’m so grateful they get to see her being her fun happy spunky self.
Because for the first year, they saw a sad, fearful, hurting little girl in so much pain who’s world got turned upside down ❤️🩹
It heals pieces of my heart when
People get to see the little girl that we left behind in March coming back to us! And it’s so fun when the nurses fight over her 🤩
Today it feels like things are turning around and like we might be OK again 🙏
This evening, you would never know if she was in the OR this morning. That is the proof of a really good anesthesia experience and super good pain meds!
Tonight I went and did some laundry while she hung out with the nurses at the nurses station… I’ve never been able to do this and it just feels like such a win! She loves to just sit and chat with them and my heart is so happy I could nearly burst! These nurses are just incredible. We love them so much.
Thank you for checking in and for messaging us and praying
Bold prayers over the phone and sending meals via DoorDash. Thank you for showing us that you care!
You taking the time to message us, check in on us, pray for us, and show your love in tangible ways is what carries us. It’s what keeps us going.
I say this all the time, but I truly wish you could feel what it feels like on our side of the phone when those messages come through.
There are moments when we feel completely wrung out. Days when we’re exhausted, discouraged, overwhelmed, and hanging on by a thread. Days when the weight of it all feels impossibly heavy.
And then a message comes.
A prayer.
A simple “thinking of you.”
A reminder that we’re not alone.
And somehow, it helps us take the next step.
You may think it’s just a text. You may wonder if it really matters. I promise you, it does.
Your kindness reaches farther than you know. Your words carry more weight than you realize. Your love has held us up on days when we didn’t know how we were going to keep moving forward.
We have been carried by so many people this year, and we are endlessly grateful.
Thank you for loving our family so well. Thank you for remembering us. Thank you for continuing to show up.
More often than not, it’s those small acts of love that give us the strength to face another day. ❤️
-our story for Gods glory
Last night was the last Filgrastim shot post chemo!! 🙌
What a night!! Avrys IV hasn’t been working well and we needed to draw more labs as well as a trough to test the level of antibiotic circulating in the bloodstream. They tried to use the IV site but it was so painful and couldn’t draw back. This meant they had to Try at another site. It took an hour and a half of trying. Three different nurses tried and nothing 💔 Avry was so brave but it was extremely painful. She cried for the entire hour and a half. 💔 finally they called pharmacy and pharmacy said they can wait till the morning for the PICC team.
Avry snuggled so hard and we slept till 6:00 when they came to put numbing cream on her arm in prep for the PICC team.
At 8:00 the PICC team came. And even the experts with their ultrasound machine couldnt locate her veins. Ugh. They tried and tried and fished💔 They finally tried another site…
We cannot get this PICC line in soon enough so we can stop turning her into a human pincushion! I don’t know how much more I can take💔😭and in that moment I was filled with gratitude. Gratitude that it hurts me. Gratitude that I can feel with her and am in pain when she’s in pain. You have to be brave as a mother when you’re holding your baby girl and she’s screaming and you can’t fix it. But I’ve learned a long time ago is to just let the tears fall along side of her. Because we FIGHT TOGETHER.
They came from surgery at 8:00.
I told Avry it was the last time we need to poke her!! No more needles! I asked her if she’s sad she doesn’t have her Broviac tubies and she shook her head NO!! I explained that we need to put another line in her arm so that we no longer have to use a needle to get the blood and give her medicine. Initially, she was distressed. But she told me how much she hates the cream and hates the blue tourniquet. And wondered if I will be right beside her and if they will do it when she’s asleep?
We headed down in her white bed and waved to Odessa and Janessa on the way down.
Bryant- The guy that came to get us from surgery is one of the pre OP techs. He has been here with us since day 1. He reminds me so much of Eddi. A while back I had asked him what made him decide to be an OR tech? He had a Brain injury and spent 16 weeks in the hospital and that’s why he went into the medical field. Which explains his level of compassion 🫶
Once in pre op, Avry was so calm and relaxed. This is probably one of the biggest differences I see. She’s grown up so much and understands more and is a bit easier to reason with because she’s feeling so much better over all and it makes such a difference.
The anesthesia team is so so good ever since our experience in Dallas and giving us a straightforward plan on how to premedicate to minimize such a traumatic separation. I’m so grateful for this for both of us!
I really do not like to walk away from the OR and be separated alone. The weight is crushing. ..
I went to get a coffee.
Pro Tip:
When you're sitting outside the OR waiting for your baby girl, and you go to order a coffee, order it under her name.
Because a few minutes later, when they call out that your coffee is ready, you'll hear someone say your baby's name out loud. And for just a second, in a place where she's behind heavy doors and out of your sight, you'll hear her name echo through the room.
It's a small thing.
Maybe even a silly thing. But when you're a parent waiting for your child in surgery, you'll take every chance you can get to hear their name.
Even bonus if it's just written on a coffee cup.💛
While I was waiting, Dr Cohn came down to the waiting room. She was coming down to do a procedure and saw me so came over. What a welcome face! She hugged me so hard and told me she can’t believe we’re back. What a gut punch for them too! She said the oncology team is feeling the rawness of us being back the same day we were discharged for the final stay. But that when she stops and thinks about Avry- she said it’s in true Avry fashion! Nothing with her treatment has been standard or easy or straight forward. She can’t have a boring chart and has to go out with a bang!! I told Dr Cohn that 3East doesn’t know how to have fun without us and it’s time yall find your own entertainment at which she couldn’t stop laughing. 😂
She looked at me dead in the eye and asked me how I was doing… not my family, not Avry but me as the mom and caregiver. 😰 ❤️🩹 and I told her it’s been such a mind twist… for the first time I wonder if she will ever ring the bell?! We had a good hard cry together and she was so gentle, kind, and encouraging. Just that morning she had called her brother (Dr Mitchel) and told him she was so mad (something totally unrelated to Avry) and Dr. Mitchell told her he’s so mad- that Avry got an infection and has to be back in the hospital. Talk about Drs that really care! Wow! Dr Cohn was so bummed to not be at Avrys farewell parade. She was standing in the line and then had to quickly run back to the Clinic and by the time she got back to 3 East, the children and I had already gotten on the elevator, and Jake was running some things out to the car. Dr Cohn grabbed him and gave him such a tight squeeze and had a good cry. She was so sad to miss this but so happy for us! I told her we will make sure she knows when Avry will ring the bell and make sure she can be there for it.
There’s just a level of kindness and compassion that’s I’ve never experienced in my life before. In a big hospital I believe you would get lost in the shuffle a bit more easily according to our friends walking Through neuroblastoma elsewhere who have experienced differently than we have. I’m just so grateful all over again for our amazing team and thank God for placing us here with them! There is also something so healing about the validation, of hard this journey is and just sitting with us in the hard and that’s exactly what she did today🫶
I waited for what felt like so long… it was almost 2 hours until I got a notification saying ‘ my loved one is out of surgery and in the PACU.’ it went another almost half hour until they called me back to the PACU.
Mary was down in post op (she’s from the Clinic and always walks us across to the hospital for every admission). She came over to me and threw her arms around
Me. She said she just found out why we were here- I begged her to run back and check on Avry for me because she is a badge holder and can go further than I can. She went back and tried, but her badge didn’t get her through the PACU doors. So she went to the nurses station and said she needs to be through to see the VIP patient.😂 oh Mary!
About that time they called me- and I ran back to bay 12. Avry was crying for me and as soon as she saw me, she fell asleep with a smile on her face. We waited about another 30 minutes and headed back to 3East.
Avry woke up and was so happy her IV was no longer in her arm and that all the other bandages were removed. She wondered about the big tubie going in through her arm. I assured her she no longer has to get needles at which she cheered at! She wondered what the sign on the door meant and I explained that it meant no more needles!
She was so chill and so happy to just snuggle up close to me. She rested for a while but then sat up and was ready to play! She got out of bed all by herself and walked over to the recliner while I cleaned the room and put fresh linens on the bed. She’s not using her right arm at all- I’m guessing that that’s temporary as she adjusts to the PICC line. She was so excited to see Apples the Clown!
The Drs were in. Im so grateful they pushed for the PICC line! What a relief to not have her be pricked.
Drs report: now that Avry has a PICC line, they wouldn’t normally send the child home with antibiotics but because we are so familiar with the broviac and we were doing her dressing changes at home, they’re willing to teach us how to give the meds thro her PICC line.
The bacteria has finally been identified as Cellulosimicrobium cellulans. This is a rare organism, that even infectious disease is not familiar with this one. We are now waiting on the susceptibility testing, which will tell us exactly which antibiotics the bacteria is most sensitive to and which treatment will work best.
For now, Avry remains on high dose broad spectrum antibiotics while the lab continues testing. Once those results are back, the Infectious Disease team will know whether her current antibiotics are the best choice or if any adjustments need to be made.
We’re grateful to finally have a name, even if it’s one that’s so unfamiliar. Now we’re praying for favorable susceptibility results, continued negative cultures, and complete clearance of the infection. 💛 because then we can go home!
Last evening we went out of the room…I chose to ask for forgiveness rather than permission in this situation because it honestly felt like a gray area. She’s not running fever and now that we’re getting negative cultures, that would point towards us being allowed to leave the room. Avry wanted to go outside so Syd put the medicine on her wheelchair and we went out to the healing Gardens. Avry forgot fish food but I’ve noticed every time we start getting close. The fish comes swimming by! Last week, Jake said he’s sure the fish know Avry because of the way they all come to the edge! I know nothing about the personality of fish but it sure is cute!
It felt so good to break out of the room last evening and Avry has been waiting to get out there ever since.
Jake so kindly asked Miss Sofia to pop in on us this week so we’re not so alone all week long. She came this afternoon and what a welcome way to break up the day! She brought me probably the best taco I’ve had yet and some fun things for Avry to do. Avry was so happy to see her and chitchatted nonstop! Then we took Sofia along out to the healing gardens to feed the fish and we saw four turtles in the pond!! three of them were babies! I just don’t know what we would do without the healing gardens and I’m so grateful for what they have been for our family! Then we went to the main entrance and blew bubbles for a while and Avry played with the balls for probably half an hour.
We came back upstairs to do laundry and I ran to do the laundry while Avry hung out with the nurses at the nurses station. I’m so grateful they get to see her being her fun happy spunky self.
Because for the first year, they saw a sad, fearful, hurting little girl in so much pain who’s world got turned upside down ❤️🩹
It heals pieces of my heart when
People get to see the little girl that we left behind in March coming back to us! And it’s so fun when the nurses fight over her 🤩
Today it feels like things are turning around and like we might be OK again 🙏
This evening, you would never know if she was in the OR this morning. That is the proof of a really good anesthesia experience and super good pain meds!
Tonight I went and did some laundry while she hung out with the nurses at the nurses station… I’ve never been able to do this and it just feels like such a win! She loves to just sit and chat with them and my heart is so happy I could nearly burst! These nurses are just incredible. We love them so much.
Thank you for checking in and for messaging us and praying
Bold prayers over the phone and sending meals via DoorDash. Thank you for showing us that you care!
You taking the time to message us, check in on us, pray for us, and show your love in tangible ways is what carries us. It’s what keeps us going.
I say this all the time, but I truly wish you could feel what it feels like on our side of the phone when those messages come through.
There are moments when we feel completely wrung out. Days when we’re exhausted, discouraged, overwhelmed, and hanging on by a thread. Days when the weight of it all feels impossibly heavy.
And then a message comes.
A prayer.
A simple “thinking of you.”
A reminder that we’re not alone.
And somehow, it helps us take the next step.
You may think it’s just a text. You may wonder if it really matters. I promise you, it does.
Your kindness reaches farther than you know. Your words carry more weight than you realize. Your love has held us up on days when we didn’t know how we were going to keep moving forward.
We have been carried by so many people this year, and we are endlessly grateful.
Thank you for loving our family so well. Thank you for remembering us. Thank you for continuing to show up.
More often than not, it’s those small acts of love that give us the strength to face another day. ❤️
-our story for Gods glory
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