"B's Battle" Fight Against Sarcoma

$13,566 of $25,000 goal

Raised by 195 people in 28 months
Early April our family went on vacation, while on vacation we noticed a lump on our sons back when he was in the crouched position.  We figured it was something he did playing like any other bump, bruise, or scrape a 3yr old boy would get. When we returned home we waited a week to see if the spot would go down.  After the week it didn't go away so we made an apointment with our doctor to have her look at it (4/21/2016).  She wasn't sure what the spot was either but felt she should order an ultra-sound to see if she could see something. A few days later we took our son to the to the hospital for the ultra-sound (4/26/2016).  By the time we made it back to work the doctor called and told us we needed to go to Peyton Manning's childrens hospital in the morning. The spot was not benign and needed to be looked at by a Pediatric surgeon.  Scared and confused we went the next day to meet with the Pediatric surgeon (4/27/2016). The same with our family doctor he didn't know for sure what the lump was from and ordered an MRI for the next day along with an appointment with the Oncologist.  He was honest enough to let us know that we wouldn't see him again for if the lump needed to be removed he would send us to an Neurosurgeon since it was so close to the spine.  As we traveled back home our hearts sank, What could this be? Why are we meeting with an Oncologist? What is going on with our son? What are we going to do? As another restless night passed we took our son back to Peyton Manning for the MRI the next morning (4/28/2016). After the procedure they sent us to meet with the Oncologist. We met with the Oncologist who made us aware of her concern after reading the MRI results. She didnt want to speculate on what she thought it was but wanted to get more information on the lump she called Sarcoma. She then sent us to the Neurosurgeon who met with us the same day. After meeting with him he told us rather than just taking a Biopsy he would rather take the whole tumor out. We all agreed that this should be done and that we should do this as soon as possible. As we traveled back home still not knowing exactly what it was other than a SARCOMA TUMOR. We spent a weekend speculating, researching, and worring. We returned to Peyton Manning for surgery on Tuesday morning (5/3/2016). The procedure took three hours and the Neurosurgeon met with us after words and told he felt he removed the whole tumor but had to take a little more muscle than expected. They put us on the third floor after the surgury which is the last place we wanted to be because we knew this floor was the Cancer floor. We spent the next two day wondering how this happened to our son. He has never been sick, not even an ear infection or sore throat. Now we are in the Hospital recovering from major surgery waiting to hear for sure what it was. On Thursday afternoon the Oncolosist came in and told us the initial results of the pathology report of the mass Rhabdomyosarcoma or RMS and that is was Embryonal. She wanted to get a few more test done that day so we went for an Catscan, Bonescan, and another MRI. The next day she met with us to let us know that there was still residual spots left on the bones in our son. We would need to start Chemo and Radiation next week after central line port would be put in his chest.  So in 1 month we went from what we thought was a bump or bruise on our sons back to having it removed and on a 43 week treatment plan. Whats next? How are we going to do all of this? How did this happen? How are we going to afford all the travel and time off work? Our eldest son is graduating and can we juggle everything?
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Our precious “B” went home to be an angel with our Lord and Savior Jesus Christ at 12:03 this afternoon. Although our hearts are aching and broken, we are relieved to know he is no longer in pain.
He has been an inspiration to all of us, and that is how we want him remembered.....a fighter, a warrior, leader, and a faithful soul! He loved his family and Jesus too.
We will update everyone later with a celebration of life ceremony soon.
God Bless all of you!
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As most of you know we had to cut our vacation short. B man took a turn on us and wanted to be home. We left yesterday morning and we got home early this morning. Hospice has been called in and TBH our time with him is coming to an end. I don’t know what else to say at this time. We ask for your prayers at this time and for patience as we struggle with this trying time for our family...
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Some shots of B and our family...
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Well things didn’t go as we had hoped yesterday at CCH. When we arrived to start the trial B had built up fluid on his left lung. This was from the tumors causing the lining to leak. They removed 410cc off of him which is just shy of a big bottle of water. We have been kicked off that trial for a minimum of two weeks since the drainage procedure. But if we have to do it again it will be another two weeks and that’s if we get approved again for a trial and they still have a spot open. They are sending us home and back to PMCH for another look at the chest tomorrow and Monday. We were told at this time we are really out of options, because the tumors are growing and causing this to happen on his lungs. Really they are gonna try and make him feel good for the Disney trip but that the quality of his life will start to dissipate without a miracle. Please just pray for B today and everyday over the next few weeks that the tumors at minimum stop leaking on his lungs to even give us a fighting chance at trying something new.

Thanks, the Rayburn’s and Mr. Brantley
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Read a Previous Update
Kara Raychelle
28 months ago
1
1

Please give him a hug and a kiss for me. I love this little guy so much. My thoughts are with you guys.

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Kalen Edwards
28 months ago
1
1

Kalen, Michelle, Presley and Declan... Continue to Fight

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Jessica Miller
28 months ago
1
1

Im praying for you all. Ive shared this & hopefully that will get you guys some more help. If we can do anything please let us know. I hate that you guys are going through this.

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Corey Lobo Davis
17 months ago

I'm going to do everything that I can possibly do, to get every biker whom I know, to help you raise money needed. I will be praying for all of you. Much love, Corey

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$13,566 of $25,000 goal

Raised by 195 people in 28 months
Created May 9, 2016
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DP
$100
Darryl & Sharon Pierce
3 months ago

So sorry for your loss. Little B's ordeal is over. He's in Heaven now and what a wonderful place to be!!!!

$25
Anonymous
3 months ago
Kara Raychelle
28 months ago
1
1

Please give him a hug and a kiss for me. I love this little guy so much. My thoughts are with you guys.

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Kalen Edwards
28 months ago
1
1

Kalen, Michelle, Presley and Declan... Continue to Fight

+ Read More
Jessica Miller
28 months ago
1
1

Im praying for you all. Ive shared this & hopefully that will get you guys some more help. If we can do anything please let us know. I hate that you guys are going through this.

+ Read More
Corey Lobo Davis
17 months ago

I'm going to do everything that I can possibly do, to get every biker whom I know, to help you raise money needed. I will be praying for all of you. Much love, Corey

+ Read More
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