Ryleigh's fight-Opsoclonus-myoclonus after Neuroblastoma

For: Ashley Burrus
Daphne, AL
Organizer: Ashley Burrus
Ryleigh's fight-Opsoclonus-myoclonus after Neuroblastoma (Ashley Burrus)
of $8,500 goal
84% Complete
Raised by 106 donors

The Story

As you all know, we had an appointment on Tuesday morning with Ryleigh's Neurologist to go over the results of her MRI that was done on Monday.

We were given the absolute worst news that a parent could ever get about their child. Our sweet girl, our bunny, our baby... has CANCER.

They found a large tumor in her pelvis. It's on her sacrum and is pushing up against her spine.

We were directly admitted to the Children's Hospital from the doctors office, and it's where we've been since Tuesday, and where we will remain for I don't know how long.

As soon as we were admitted, they began running more tests. (Labs and a CT to look for more tumors) We got the results on Wednesday for the CT and it shows NO more tumors. Just the one in her pelvis, which is great news considering the diagnoses!

She has been diagnosed with Neuroblastoma. Just based on the MRI and the characteristics of the tumor, they are diagnosing it.

Tomorrow, (hopefully) she will be undergoing a biopsy that will just confirm what we already know, and at the same time, a bone marrow biopsy to check for cancer there as well. They will then send the biopsy out and we will have results in about a week. The results will help them determine the best course of treatment for our sweet girl.

After the biopsy, she will end up in the PICU for pain management. They will keep her in there until she is comfortable enough to be moved back to her regular room.

As you all also know, I went through with my surgery on Wednesday. I need to be 100% in order to be there for our girl. So, the nurses have put it in her chart that I'm not allowed to lift her, and have all been SO sweet and helping. They've also been taking care of me and changing my bandages for me. They also called the Ronald McDonald House, and got me an apartment. That way I have somewhere close to the hospital to rest, and I can keep the big girls with me. This is our new "normal" for a long time, so we're doing the best we can with the hand we've been dealt.

Also, my amazing Mother in Law, Karen Bosley drove down on Wednesday to be with us, and said she will stay as long as we need her here. We couldn't ask for a better support system.

All I ask, is just pray for our sweet girl. She needs them more than ever. She WILL beat this! She has all of us cheering her on!
#FUCKCANCER #Neuroblastoma

While we do have amazing insurance, we are an hour round trip from home. While away from home, we will need to have extra gas money to go back and forth, especially once the big girls start school so we can keep our family together, and groceries/meals for our apartment at the Ronald McDonald house. All leftover money after using for needed expenses only will go towards donations for the Ronald McDonald House for their amazing hospitality. Any amount helps! Love and hugs to you all! 

Fundraiser Updates

Posted on March 8, 2018

Posted on March 8, 2018

Ryleigh Update: 

Ryleigh's been discharged and is home!! She was so happy to be leaving the hospital. While Mimi (Karen Bosley) and Grandma Tammy hold down the fort with Addisyn and Ryleigh, MiKayla and I are driving up to be with our other family, William's family so we can say our final goodbyes. 😔 

Thank you for keeping Ryleigh in your prayers, and please keep sharing the youcaring because March and every month following is going to be extremely busy with lots of trips back and forth for appts 3 days a week, some weeks 4 days.  

Also, please keep William's family in your prayers as they are all going through something no family should!  

#RyleighStrong #NeuroblastomaSurvivor #OpsoclonusMyoclonusSyndrome #ILoveA1in10MillionKindOfKid 

Posted on March 6, 2018

Posted on March 6, 2018

Ryleigh Update: 

Ryleigh will receive a dose of high dose steroids tonight and tomorrow night, then one more time on Thursday morning.  

After she receives them on Thursday, we will be discharged home! She will get IVIG every 2 weeks and on her off weeks from IVIG she will receive high dose steroids. We're hoping that this will help her continue to improve.  

Her myoclonus is still apparent, but not nearly as bad as when she was admitted on Friday. So things are going in the right direction, we just hope it continues going that way. As of right now, chemo is put on the back burner. We would only go forward with chemo if this new plan were to not help her improve.  

She's been eating every day, and spending a lot more time awake during the day! Which is huge considering at home she wouldn't eat and did nothing but sleep.  

Please continue to pray this new plan works, and sharing the youcaring if you would. Thank you for your continued support through Ryleigh's journey. Please also keep Williams family in your prayers as well because they need them even more so now. 💜 

#RyleighStrong #NeuroblastomaSurvivor #OpsoclonusMyoclonusSyndrome #ILoveA1in10MillionKindOfKid 

Posted on March 5, 2018

Posted on March 5, 2018

Ryleigh Update: 

Ryleigh's excited because, "I don't have to have chemo!!" After talking to Dr. Maertens just a little bit ago it's been decided we will do the 5 days of steroids still. 

Then going forward we will be doing IVIG every 2 weeks instead of every 3 weeks. Then on her off weeks from IVIG we will come in for high dose steroids.  The steroids will drop her immune system a bit, but not nearly as much as chemo. So, we will go forward with this to see if it helps her improve. Although her Myoclonus is still happening, it's not nearly as bad as it was when we were admitted on Friday.  

So, we are going to be in Mobile 3 days a week at least every single week. Some days 4 days a week because she has other appts and her MRI under sedation coming up this month.  

Please, please share the youcaring, donate if you're able to. I wouldn't ask if it wasn't needed. Thank you all SO much for your continued prayers. They mean the world to us. 💜 

#Ryleighstrong #NeuroblastomaSurvivor #OpsoclonusMyoclonusSyndrome #ILoveA1in10MillionKindOfKid 

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