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All the love for Amelia

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All the love for Amelia

We wanted to create a space where friends and family could get updated information about Amelia.

08/25/2026

Friday was scan day to check out the lesion on Amelia’s hip. They resulted it as a nonaggressive lesion. We spoke to the oncologist yesterday and they want to get another look at it in October when Amelia has her 3 month MRI. The oncologist still isn’t sure exactly what the lesion is but since it had minimal growth (0.3mm) since her last scan and Amelia doesn’t have any symptoms associated with it the risk of a biopsy doesn’t outweigh the benefit.

08/08/2026

Back to School✏️ Going back to school has been a big adjustment for Amelia and she ended up with a migraine on day 2. We have a lot of appointments coming up as well.
August 21- CT to check the lesion on her hip/lower spine
October 1- MRI of brain 3 month follow up
October 2- Neurology (we may see him sooner to check on her migraines and switch medications)
October 13- Oncology
When we got her original diagnosis I thought all of the appointments would be the testing leading up to surgery and then surgery itself. I didn’t realize how much would still be involved after surgery. It’s an exhausting cycle. This is a lifetime adjustment for us all and doesn’t just include doctors offices. It’s the phone calls from school, the back and forth between appointments, the big emotions at home and advocating for our girl. On top of all of that we are raising 2 other kids with big needs as well. Thank you to everyone who has extended a helping hand, lightened our load and shown us grace during the hardest season of our lives❤️ We all need a big nap and a vacation 😅

07/14/2026

Today was Amelia’s oncology appointment. Dr. Smiley said the brain looks good! There was a little bit of the borders from her excision that lit up on the MRI but they think it’s scar tissue vs the tumor growing back but they are going to keep a really close eye on it. Amelia is scheduled for an MRI every 3 months for a full year then will go to every 4 months 1 year post op and then the following year every 6 months and then after 5 years will go to 1 a year. The oncologist is still working with radiology to decide what scan would be best for the lesion on her hip. She mentioned the likelihood of a CT scan in the next week though. She is very confident that it’s not the same as her brain tumor due to the way it reacted to the contrast and lit up on the scan. We are still hoping it’s benign and just a bone cyst or something similar. Based off of the pathology reports from Amelia’s brain tumor and the genetic mutation her tumor had, IF it were to come back, she would be a good candidate for oral chemo vs getting a port and IV chemo. We also met with a genetic counselor today which we didn’t know was happening! Genetics is getting a prior authorization to move forward with genetic testing to make sure we aren’t missing anything else. Looonnngggg day at oncology and a lot of information but we are so thankful for the best team of doctors🩷

07/10/2026

Amelia had a great follow up with Dr. Mangano! He gave her the “All Clear” from a neurosurgery standpoint! He looked at her MRI and said that the brain is his expertise so he didn’t want to comment on the findings on the lower spine/hip but he did show me a picture of it and said it wasn’t related to her brain tumor. Nurse Jillian picked out a fun Amelia Bedelia book and had it waiting in the room too🩷 We meet with oncology on Tuesday and will hopefully have some answers then on what the next steps will be. Thank you to everyone for all the prayers!

07/08/2026

We got Amelia’s results back from her MRI yesterday and they found a 7 mm lesion on her lower spine/right hip. The imaging wasn’t great because they were only getting her brain, neck and spine and the lesion was at the very bottom of the film. We won’t have any other info or a plan until we meet with her oncologist on Tuesday. Although this isn’t the news we were hoping for we are trying to remain optimistic that it’s nothing scary🩷 Thank you for all of the love and prayers!

07/06/2026

Amelia did awesome for her scan! When she woke up her first request was Chipotle so that’s what she got! We are now headed home to rest and wait for results🩷

07/05/2026

Our sweet Amelia has her 3 month scans tomorrow. She has to be at Children’s Liberty at 8am to get prepped. She is having an MRI of her brain, neck and spine so she will be sedated and they said to expect the testing to take about 2 hours. Feel free to wear your Amelia shirt tomorrow and say some prayers for good results🩷 If you want to leave Amelia an encouraging little note below I will make sure she sees them all!

06/15/2026

Last week Amelia went to the dermatologist for a routine skin check. When we met with her oncologist we found out that the genetics of her tumor were linked to melanoma. Along with all of her other follow up appointments we will also be adding skin checks every 6 months. In 3 weeks Amelia will have a sedated MRI of her brain and spine and then the following week we will meet with her Neurosurgeon to hopefully be cleared for ALL activities and will also meet with her oncologist. She is ready to get back to doing flips on the trampoline and being able to run and play with her friends!

05/28/2026

Last Day of 1st Grade🙌🏻 This has been the most wild school year but we are so thankful for the amazing staff and students who have supported us throughout this journey! Amelia has been so strong, brave and determined to finish this school year! We are so proud of her🩷 Amelia has her MRI of brain and spine on July 6, Final Post Op appointment with Neurosurgery July 10 and then July 14 she will see Oncology to review her MRI results. Until then you can find us at the baseball fields cheering on Teddy, at the pool with friends or around a campfire eating a s’more! Cheers to summertime☀️

05/08/2026

Logan Supermart is our favorite place to stop and get a sweet treat! They let Amelia create her own stacker and it is delicious! Stop by this weekend and give it a try🩶

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PO BOX 129
Guilford, IN
47022

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