Ryleigh's fight-Opsoclonus-myoclonus after Neuroblastoma

For: Ashley Burrus
Daphne, AL
Organizer: Ashley Burrus
Ryleigh's fight-Opsoclonus-myoclonus after Neuroblastoma (Ashley Burrus)
$7,225
of $8,500 goal
85% Complete
Raised by 107 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 April 28, 2018

Posted on April 28, 2018

Ryleigh Update: 

Today has been a rough day for my bunny. She woke up screaming and having a horrible rage attack. I couldn't even get her dressed without Tim's help.  

I gave her, her medicine that helps with the rage and she ended up laying back down. Once she got up I fed her lunch, and then she went right back to being inconsolable. So, she's back to laying down again. She's starting to sleep constantly again. 😔 Luckily, she still has a little appetite though.  

Why my bunny? Why must she have to endure so much? Why can't I just take it for her? So many questions, no answers and a mama's heartache. 💔 

Waiting to hear from Dr. Maertens on whether Ryleigh will be admitted on Monday or Tuesday. She goes to the ER today to have the TB (tuberculosis) test read to make sure it's negative. Which I'm pretty confident it is, because she hasn't had a reaction.  

Please share the youcaring, I have a feeling that quite a few hospital stays are going to be necessary. Thank you everyone for supporting us and loving our girls! 💜 

#RyleighStrong #NeuroblastomaSurvivor #OpsoclonusMyoclonusSyndrome #ILoveA1in10MillionKindOfKid 


Posted on April 5, 2018

Posted on April 5, 2018

Ryleigh Update:  

We're in the USS Hope Clinic today for IVIG and high dose steroids. Steroids are already done, and IVIG is at the max rate. We should be done a little before 3, so just in time for the big girls to be done with school. 

Ryleigh LOVES balloons, and when we get to see them in the USS Hope Clinic it's a celebration because it means another child is marking the end of treatment by ringing the bell!! Today, Ryleigh got to have 2 of those balloons! 💜  

Now, we just walk the halls to pass the time until IVIG is complete and we get to go home. On a good note, her weight is up and holding at a little over 22lbs. Everyone keeps saying how good she looks and how much hair she has! We're still coming back every week for now, it's just Been a little messed up with me being so sick, hopefully I'm on the mend now. Please share the youcaring if you're able to, because every week here adds up SO fast. 🤦 Thats all for now, have a great day!  

#RyleighStrong #NeuroblastomaSurvivor #OpsoclonusMyoclonusSyndrome #ILoveA1in10MillionKindOfKid 


Posted on March 26, 2018

Posted on March 26, 2018

Ryleigh Update:

Okay, it's the update everyone has probably been waiting for....Ryleigh's MRI results are in:

Ryleigh is CANCER FREE!! There was no new tumors found!! The MRI is clear!! 

Sorry it took me forever to update. It's been a long day, and I'm still not feeling 100%.

But, today we will be once again thankful that our girl is Cancer Free!!

#RyleighStrong #NeuroblastomaSurvivor #OpsoclonusMyoclonusSyndrome #ILoveA1in10MillionKindOfKid

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