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)
of $7,500 goal.
Raised by 80 donors
44% 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 August 20, 2017

Posted on August 20, 2017

Ryleigh Update:

Here is your longer update on Ryleigh and how everything is going.

Yesterday, (Friday) around 5:15pm the 1st chemo drug was started. It ran for 1 hour and was finished. She then had the next chemo drug over 1 hour along with post hydration that was done over 2 hours, to protect her kidneys. During the 2nd chemo drug they have to take her blood pressure every 10 minutes to make sure she doesn't have a reaction.

Overall, she did extremely well considering. During chemo we are restricted to her room. Which she does NOT enjoy because she likes to be on the move.

Last night, well at some time after midnight, Daddy was finally able to get her to sleep. She does not sleep well in the hospital, and I don't blame her one bit. Thanks to my amazing husband his cuddles and the magic in his voice when he sings to her each night, she was able to get a few hours sleep until the nurse came in for vitals and woke her up.

Today she was a little more cranky. Daddy fed her breakfast, I got to feed her lunch, and she seemed to be in a much better mood for a little bit.

Tonight chemo started again around 5:15pm. This time it was just one chemo drug that ran for 1 hour with post hydration again to protect the kidneys. She also had to have her blood pressure checked every 10 minutes. She screamed the entire hour. She does NOT like anything being hooked up to her port or the BP cuff. She also doesn't really like the nurses or doctors if she knows they are going to be doing something. But going through the halls, she will smile at them.

Again, our girl made it through like a champ. Daddy then fed her dinner, and she was all smiles for a while. I'll post some pictures of her being adorable. :) 

Unfortunately, that didn't last long. I left the hospital for the night to bring the big girls home, when Daddy text me and said Ryleigh had puked everywhere. :(  She has gotten nausea meds since before even starting chemo, and around the clock and up until this point, they have helped tremendously. Currently, Daddy is washing her blankets so that she (and He) will hopefully be able to get some rest tonight.

Tomorrow, she is due to have the final chemo drug in this cycle and then be discharged. BUT, she will only be coming home IF she's not throwing up.

So, PLEASE pray that her nausea/throwing up calms down or we're looking at our girl being miserable and a longer hospital stay. Keep sharing the youcaring please, because just with her throwing up we are looking at several trips to the ER to be evaluated, and possibly admitted. Basically, we will repeat this the entire 3 weeks she has "off" from chemo until the next cycle.

#FuckCancer #Neuroblastoma #RyleighStrong #FightLikeAGirl #OurGirlKickedCancersAss #StayGoneCancer

Posted on August 19, 2017

Posted on August 19, 2017

Ryleigh Update: 

While I know everyone wants a big long update, honestly, I'm exhausted. So I will do a big update tomorrow.  

For now, I'll leave you with the important things: Ryleigh is safe and sleeping with her Daddy right next to her if she needs anything. The big girls are safe and with me at home for the night. We will go back up in the morning to go see our girl.  

Chemo day 2 is tomorrow. Keep praying and sharing the youcaring! Love to you all! 💜  

#Fuckcancer #Neuroblastoma #RyleighStrong #FightLikeAGirl #OurGirlKickedCancersAss #StayGoneCancer

Posted on August 18, 2017

Posted on August 18, 2017

Ryleigh Update: 

After speaking with Dr. Imran (Oncology) Ryleigh's stage of cancer has been upstaged from Stage 2 to Stage 3.  

After getting the full pathology report, it shows that the cancer travelled to the opposite side of the body into the lymph nodes. The 1 lymph node they removed on the other side of the body than the tumor showed cancer. This lymph node was NOT encapsulated in the tumor. It was not in the tumor at all.  

This makes much more sense as to why they want her to do chemo. We also went over the chemotherapy treatmemt and all of the awful side effects. Then signed consent for chemo to begin once we are admitted. 

The one good thing (because we have to find the good some where) is we originally thought we'd be here until Tuesday, but as long as everything goes okay we will be discharged on Sunday! That means both Tim and I will be with the big girls on their first day of school!!  

Keep praying please, because these next few months are going to be extremely difficult in many ways. Share the youcaring if you would, and donate if you're able! We appreciate every single prayer, penny and thought sent our way! 💜 

#Fuckcancer #Neuroblastoma #RyleighStrong #FightLikeAGirl #OurGirlKickedCancersAss #StayGoneCancer

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