Keeping our family together while Ryleigh fights cancer

For: Ashley Burrus
Daphne, AL
Organizer: Ashley Burrus
Keeping our family together while Ryleigh fights cancer (Ashley Burrus)
$6,685
of $8,500 goal.
Raised by 97 donors
78% Complete

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 December 15, 2017

UpdateImage

Posted on December 15, 2017

Ryleigh Update:

Well, I just called the Neurologists office AGAIN and left another message. They still haven't returned any of my calls. When I last updated I had mentioned they were waiting on a referral for Dr. Maertens since we switched to him just recently from his partner Dr. Chalub. Well, according to our insurance not only is that referral in, it's already been approved. Then there is another one for supplies and such, so IVIG. Well, according to our insurance that one doesn't need authorization.

So here we are still waiting to schedule IVIG and Ryleigh hasn't had it since November 2nd. That was 43 days ago. Well, she's supposed to now be getting it every 21 days. I'm beyond frustrated. But, I continue calling and fighting every day so that Ryleigh will get the treatment and care she not only needs, but deserves. 

Earlier this afternoon I received a call from the sedation nurses in the MRI Imaging Center. Ryleigh's MRI under sedation to make sure her cancer hasn't come back is scheduled for Monday at 8am. She isn't allowed to eat anything after Midnight, and then she can have clear fluids until 6am. We have to be there at 7:30 to check in and sign paperwork, and then they will access her port so they can give her the sedation medicine. Because of her OMS, sedation medications tend to make her extremely angry. So, she will probably wake up from sedation VERY mad. So, Tim and I will take Bunny Monday Morning, and then Thursday the 21st we are seen in the USS Hope Clinic to get the results of the scan. 

This anxiety I get every time Ryleigh is due for another MRI is almost crippling. My biggest fear is that it could come back. She's already been through so much, and will continue dealing with a lot. I just pray that the cancer will stay gone!! Please pray for our girl that her IVIG gets scheduled ASAP and her MRI comes back clear!!

#RyleighStrong #OurGirlKickedCancersAss #OpsoclonusMyoclonusSyndrome #ILoveA1in10MillionKindOfKid


Posted on December 11, 2017

Posted on December 11, 2017

Ryleigh Update:

Well, It's Monday which means a new week for me to continue fighting for Ryleigh to get her IVIG. I still have not gotten a return phone call from either Dr. Maertens' nurse or the nurse manager as to what is going on.

I was able to talk to Ryleigh's Hematology/Oncology nurse and she was able to look in Ryleigh's chart and see what was going on. Apparently the notes that were last entered (last week some time) say that they contacted Ryleigh's primary doctor to have a new referral sent in for Dr. Maertens since the original Pediatric Neurology referral was for Dr. Chalub. 

It then says that once they receive that referral, then and only then will they contact our insurance about getting IVIG approved. So basically in the 2 weeks since we've actually seen Dr. Maertens, NOTHING has been done to get Ryleigh scheduled for her next infusion. I'm so frustrated. I put another call in today, so we will see if they ever call me. Otherwise I'm going to call her primary doctors office tomorrow to get the ball rolling, and then contact our insurance about forcing the approval so we don't have to wait the usual amount of time which can be up to a week before approved!

Keep praying for our girl please! Her balance is really off, her eyes are now "dancing" again and she won't try to push her walker because she's scared of falling. Also, one week from today, on December 18th, Ryleigh has her next MRI under sedation to make sure there is no reoccurrence of her cancer. 

#RyleighStrong #OpsoclonusMyoclonusSyndrome #ILoveA1in10MillionKindofKid


Posted on December 8, 2017

Posted on December 8, 2017

Ryleigh Update:

To say I'm beyond pissed, would be the understatement of the year. Ryleigh saw her Neurologist on November 27th. 11 days ago. I still have NO idea when her IVIG infusion is going to be.

Dr. Maertans was okay with Ryleigh doing the IVIG at home, meaning home health would come to our house, and she would be in the comfort of her own home during infusions. Well, after speaking with the home health company, they informed me, "We have nurses, but we're not a home health company. We can't come to you, you have to bring her to us."  Meaning we have to drive even further than the USS Hope Clinic at the Hospital. I told them that whatever they do, it needs to happen ASAP because my child is suffering the longer they wait. She then rudely informed me that, "Nothing will happen ASAP."

After talking with Tim, we decided that this isn't Ryleigh's best option. We don't want her to have to get used to a whole new group of nurses, when she's already familiar with all of the amazing nurses at the USS Hope Clinic. So, I called and asked for it to be switched back to the hospital, because they will have to access her port each time, meaning we have to hold her down so they can put a needle in. 

I have been calling the nurse manager at the Neurologists office since LAST Friday, and she still hasn't returned my phone call. I just put a call in AGAIN to the Neurology clinic for someone to call me so I can figure out what the hell is going on. I talked to the nurses in the USS Hope clinic and they said as soon as they have orders, they are ready for us. So basically I am waiting for them to send an order over to the hospital, which is across the street from them so Ryleigh can have her IVIG.

#RyleighStrong #OpsoclonusMyoclonusSyndrome #ILoveA1in10MillionKindOfKid

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