Tuesday, March 6, 2018

#PrepWithPurpose - Prayers for Revel

For backstory on what #PrepWithPurpose is all about please read the blog entry and/or Instagram Post.

Hello Friends,

Less than one month until stage time. First show is St. Louis Pro on 3/30-3/31 and then the very next weekend Salt Lake City Pro. Coach is happy. Me .. not so much .. lol. That is the story of my "prep life" most of the time.

So much of prepping for that stage is mental and (for me) on days when I feel like I'm not on track to be stage ready .. I can get very UNMOTIVATED.  I kinda get that "what is the point" attitude that I SHOULD NOT have. Many people are motivated by set backs .... but for me it's the little daily "wins" that give me fire and if I don't feel like I'm having daily "wins" ... sometimes I am less motivated to PUSH myself. Insert PREP WITH PURPOSE!

This little prayer chain gives me life some days. When I want to give up, when I don't feel like it, when I want to complain .. all I have to do is shift my focus to the person I'm lifting up and for at the moment. If they can be battling whatever it is they are battling then I can certainly stop complaining and get my cardio or workout done. I am BLESSED to have the ABILITY to do this. I refuse to take that for granted.

This week another child with cancer is our focus. We will be dedicating our physical abilities to this little soldier who is fighting to simply ... LIVE.

Here is Revel's back story.

(Revel's story from the families Fundraiser Page)

Meet Revel, he was diagnosed in January 2017 with Stage 4 High Risk Neuroblastoma. Revel has been through 7 rounds of chemo, multiple surgeries, two bone marrow transplants,12 rounds of radiation, and then we moved on to maintenance Immunotherapy. Revel was NED (no evidence of disease) September 2017. We we're so relieved, all we had to do was finish up 17wks of immunotherapy and we're we're DONE. FINISHED.

We got half way thru immunotherapy before we found another mass. It appeared out of nowhere, Revel had clear scans in November. His new scans showed a 7X7cm tumor in his abdomen and a 2X2cm in his chest. But they were growing fast. Too fast. The decision was made to biopsy the masses and intubate Revel. The masses continued to grow, almost doubled in size. The one in his chest compromised his airway and threatened his aorta. So as of now he is in the PICU, sedated and intubated. Relapsed NB has no cure. It's all trial and error. Right now we are simply going from one facility to the next - looking for a cure. Looking to give our sweet baby a chance at life.

UPDATE as of 3/5/18 (his moms post on facebook)
Revel has had constant super high fevers for the last 48hrs. The doctors were certain it was due to his non existent white blood cell count, but today JR and I had enough. We requested that Revs be put back on the higher dose antibiotics that he was on prior to these fevers starting and that they do further testing just to make sure it wasn't something more concerning. The Dr gave me a whole condescending speech about if it looks like a duck and quacks like a duck it's probably not a goose. To which I replied, let's go on a fudging goose chase then! Anywho; after a day of labs, scans, and swabs; they confirmed that it's a goose... A goose named pneumonia. Those of y'all that know me know that I can be a little hot tempered, so you'll be proud to hear that I kept my cool and let JR handle it. But for goodness sake y'all, we know our kid. We know when he is not ok. Why can't we get them to listen? I will always advocate for my baby, if Drs don't like that, tough. So, now we're on the right meds and still waiting for counts. When counts are zero an illness like pneumonia can be deadly to cancer babies. Please keep praying and keep loving Revel, he is holding strong because of you!

His moms words in her Facebook posts are very hard to read. Here is the link to his page if you want to read them all, keep up with any updates and read more about him.

But here are some paragraphs from some of her posts that probably got me the most .... 

We're running out of time. Revel is fighting as hard as he can and y'all are praying with all your might, but how do we stop time?

Before Revel's cancer I never thought about time. I never thought that I would be begging for more time with my son, I took time for granted. I was always rushing around, pushing things off until I had time. I wish I could go back and pause. I wish I could slow down and enjoy every single second. I'm trying to remember all the giggles, all the hugs, all the kisses, all the cuddles. We all need to slow down and squeeze them a little tighter, hold their hand just because, tell them you love them a million and one times, kiss every boo boo, wipe every tear, let them climb into your bed, don't rush them out the door in the morning because you're running late, always make sure they know how special they are.

I have spent the majority of the last 72hrs staring at my sweet boy. Trying to memorize every feature of his sweet face. I watch his chest rise and fall with every breath. I keep my hand on his belly, I don't know if I'm trying to will this tumor away or just hold his boo boo for comfort, maybe both. .....
Why can't I save him? I am helpless, I can't do anything. Revel's tumor is too big, it's pushing too far up, his lungs are starting to need help. ........This is so unfair. I hate Neuroblastoma. I hate Cancer. God, please save baby.


Wow. Just wow. We are not guaranteed time my friends. Spend yours wisely and at some point in the 24 hours you are blessed with today .. please join me in lifting up and for this little boy and his family. #RevStrong

With every rep and every step I will be saying Revel's name and asking God for a miracle.


** Also, as always, I can not vouch for this families financial needs as I do not know them. But if you want to donate there are a couple of fundraising pages set up to help this single income family during this horrible time. Here is the Go Fund Me Page.  Also a group called the Quit Bitching Coalition is raising money. I don't know anything about this coalition but I'm going to look into them. I'm pretty obsessed with their name and what it seems they are doing!! You an Pay Pal them at INFO@QUITBITCHINGCOALITION.com, If you choose to go this route of donating ... MAKE SURE WHEN YOU DONATE YOU MENTION “Revel”. **

** Another update for those that are joining me regularly for PRP. The little girl Sydney that we lifted up and for a couple of weeks ago ... passed away. Please keep her family in your prayers.

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