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If you've never read a #MollysKids post, start with this one. Creative. Powerful. Real.

BESSEMER CITY, NC (WBTV) -

Emails. Chronological order. From a mom in Bessemer City.

This is how I received information about Jaxon Queen. Read on.

November 5th >>

"A Facebook friend of mine sent you a message about my son, Jaxon. You told her to have me email you. I really don't know where to start. My little boy has been fighting since conception."

November 5th, later in day >>

"In 2013 I was told I couldn't get pregnant, but then I did! I was high-risk from the start. My water broke at 25 weeks. Jaxon was born at 26 weeks. 

November 6th >>

"He weighed 1lb, 14 ounces."

November 8th >>

"Jaxon fought for what seemed like forever at Levine Children's Hospital. He overcame a long list of problems and extreme prematurity. But he made it! He smiled as we spent Halloween, Thanksgiving, Christmas and New Years at Ronald McDonald House of Charlotte."

November 10th >>

"After three months we finally got to bring our baby boy home. He was still smiling. We thought the worst was behind us. We were wrong."

November 12th >>

"In August, after yet another hernia surgery, Jaxon started having unexplainable seizures."

November 12th, later in day >>

"After another stay at Levine's, we left without any answers. Just lots of follow-ups. One of which was a sleep study. Two weeks after the sleep study I went to check on my son only to find him blue and limp. He'd stopped breathing in his sleep. We performed CPR and were rushed back to Levine's."

November 13th >>

"When we got to Levine's, we found out he has severe obstructive sleep apnea. Something was blocking his airway."

November 14th >>

"It was his tongue."

November 14th, ten minutes later >>

"His tongue is too large and falls down and blocks his airway. This, along with a newly-found leg deformation, lead to genetic testing."

November 14th, twenty minutes later >>

"But he still smiles all the time."

November 15th >>

"All this brings us to today. The genetic testing gave a whole new diagnosis: Beckwith-Weidemann Syndrome (BWS). We got the diagnosis the day before I sent you the first email. That's why I'm sending these emails in spurts. To make a point. This is what it's like to be a parent of a sick child. You just get little bits of information at a time. You never know what's coming next, or when. Meantime, you just hope your child keeps on smiling."

November 16th >>

"Just found out: Jaxon has to undergo a tongue reduction surgery in the coming weeks."

November 16th, later in day >>

"The surgery will be painful. He'll more than likely have to have a g-tube for six months. He'll also have scans every 6-8 weeks to check for tumors. BWS kids are 600-times as likely to develop abdominal cancers as a normal child."

November 17th >>

"Well, now you're caught up. And now you're going to get the information in real time like we're getting it. Jaxon had blood work done. Unfortunately, his AFP's (liver enzymes) came back extremely high. Now we're looking at a possible tumor on his liver."

November 19th >>

"We're still waiting for oncology to confirm."

November 19th, two hours later >>

"He's still smiling."

November 21st >>

"Still waiting."

November 22nd >>

"There's NO CANCER! Children with BWS often have elevated AFP's due to their genetic make-up. That's why Jaxon has high numbers! MY BABY DOESNT HAVE CANCER!!"

November 23rd >>

"Jaxon is scheduled for a tongue reduction on the 25th. This will make it the second year in a row he's spent Thanksgiving at Levine's and The Ronald McDonald House. It'll hopefully end up a great thing. Maybe the reduction will help (if not cure) his breathing and feeding issues?"

November 24th >>

"Now I find out it is not uncommon for BWS kids to need more than one tongue reduction. We're hoping the first time does the job. Big tongue or not, my baby has an amazing smile!"

November 24th >>

"Surgery is tomorrow. We still have no idea what time. I'm waiting on a call from the hospital. I have four kids and can't plan a thing for the day before Thanksgiving because we don't know whta time surgery is."

November 24th, an hour later (ten minutes before posting this) >>

"Wish us luck."

--

I have been very close with many families for many, many years, and never have I understood the journey like this. Thank you, Lauren Queen, for showcasing how the NOT knowing and the constant waiting can make a parent half-crazy. I was made half-crazy just sitting, waiting for your updates and it's not even my son. I kept all your notes. Once I understood what you were doing, I found them incredibly powerful. 

Good luck tomorrow. Whenever it happens.

Please, tell us how it goes.

You can send it in one note.

?#‎MollysKids

**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there – which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids at wbtv.com/mollyskids.**

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