Way Too Many Florida Photos

Enjoy!

Wish: Granted!

Last Friday, Josiah was granted his wish, to go to Florida and see where Mickey Mouse lives.

Before being hurled in to the world of pediatric cancer, I thought Make-A-Wish just sent kids who were dying on trips, but in reality, they serve any family whose child has a life-threatening medical condition. While Josiah is stable, he’s not out of the woods. The group has met the wishes of more than 250,000 children around the world.

We interviewed with Make-A-Wish last year. The Mid-South chapter left our house and started raising money and support for our trip. At the party on Friday, we met some of the individuals and companies who made this possible. It was humbling beyond belief.



Just two days later — one week ago — we boarded a plane and headed to Orlando, the entire trip planned and funded through Make-A-Wish.

Upon landing and picking up our rental car, we headed to Give Kids the World. GKTW is a 70-acre resort with over 140 villas, entertainment attractions and venues, and fun specifically designed for children with special needs. There’s a pool, ice cream parlor and giant model train set. Disney characters visit almost every day, and there’s a party every night.



During the week, we visited Animal Kingdom, Hollywood Studios, Legoland and of course Magic Kingdom.



All free of charge. And at all four parks, we enjoyed special treatment. We didn’t wait for photos with characters or rides. We didn’t pay for said photos, or the strollers we rented. We had front-row seats to shows. Disney is as magical as everyone says.



On Thursday, we drove down to Cocoa Beach to let the kids see the ocean. Even though Allison Mae is a bit of a neat-freak, she didn’t mind getting covered in sand, or covering her brother with it:



One day at breakfast, a GKTW volunteer sat down across from me. “Everyone knows how special your kids are,” he said. “But you’re special, too. It takes a lot to raise children, especially if one is sick.”
His words are still resonating with me, and they will for some time to come. He summed up this trip better than I ever could.

It was great to be at a resort where every family knows the fear Merri and I live with. It was great to see our kids run and play on the beach, and to be spoiled at Disney. But it’s good to be home, too.

Josiah Gets His Wish

This morning, Josiah's Make-a-Wish trip was unveiled. Thanks to all of the family, friends and supporters who came out and have made our trip possible. We honestly are overwhelmed at your kindnesses.

Here are some photos from the party.

YAY!

Dr. B gave us an unofficial MRI reading of STABLE!

Dr B is extremely cautious and we love that about him. He reminded us that Josiah is not out of risk for tumor growth, but each stable scan means it is less likely! There was even talk of going to yearly scans.

That kind of makes us nervous so we're going to scan again in November 2013 and then decide at that point what we all feel comfortable doing.

YAY!

Pray for good news and successful treatments for BelleBelle and Hallie.

So It's April...

It's a catcher-upper so settle in, people.

March was pretty busy for us. Josiah, Allison and I had Spring Break from MDO which means we basically took up residence at the Kroc Center. It's awesome. Go take a tour if you aren't already a member.

The following week the three of us went with YiaYia to visit her family in North Carolina.

Bundled up driving through the mountains

Chillin' with Uncle Jeff in his chair

Lolly squishing Great Nana's face

With YiaYia at the carousel she rode as a child

Many of you know and have met Josiah's BFF, Belle Belle. While we were out that way we drove down to South Carolina to have a quick playdate and meet the Mitchell siblings. It was awesome.

We look forward to seeing Belle at the end of this week! She has scans Friday.

Everyone was worn out. Thanks to Aunt JenJen for the photo :)!

On our way across Tennessee we got to stop and spend some time with Uncle Josh and, my old roomie, Aunt Allyn! Josiah took this with his disposable "green camera" that bought with his piggy bank money from Superlo. He was very, very proud.

Not bad on the framing, J. Cutting off feet is better than cutting off heads.

So that was March. After two weeks off MDO 'school' Josiah told me he was done with school. Nice try, kid. You haven't even tasted kindergarten yet. Allison, on the other hand, asked almost daily when we were going back to school.

And now it is April and it officially feels and looks like spring. Every morning we go outside and try to guess which buds are going to open that day.

Josiah is doing great! His endocrinology appointment last week showed his growth hormone levels are both within normal range now. He's around the 30-50% for growth of kids his age.

His psychology evaluation also went pretty well. He's caught up so much in his two and a half years off treatment. Since having a healthy, precocious daughter I've noticed myself forgetting what a struggle every childhood milestone has been for Josiah. We are so proud of him and his hard work/ play with his OT, PT, and speech aunties. I can't even think about the day he graduates from needing weekly intervention. Mr. Social Butterfly will not take that well.

Those of you we have the pleasure of talking with regularly will already know that Josiah's MRI is this Wednesday morning. As usual, we are asking the Lord for another stable report. We will partake in the traditional Memphis Pizza Café pizza dinner the evening before in order to ease the hunger pains of being NPO.

Pray for our little friend Hallie as she powers through radiation these next few weeks. She and Josiah were diagnosed with the same brain tumor. We met her family when we both spoke on the same panel about how our children have benefitted from occupational therapy at St Jude.

Pray for Mitchells (BelleBelle) as they prepare for scans and what is best for their dear family.


Isaiah 41:13
"For I, the Lord your God, hold your right hand; it is I who say to you,"Fear not, I am the one who helps you."

Clinging,

Merri

Heart Like a Kick Drum

I've been working a lot, and today after church, I decided Josiah and Allison should enjoy some of the systems we've put in the new building. The result? A dance party to their favorite song:

Making a Wish

Don’t tell Josiah, but we’re headed to Disney World with Make-A-Wish.

(Seriously, don't tell him. He has a "reveal" party right before the trip!)

Many of you know that our son has been in a fight with brain cancer since turning six months old. 

Now, at four and a half years old, we’ve been extremely blessed that his cancer has been stable for two years.

See, Josiah’s type of cancer doesn’t go in to remission. Here’s how the American Cancer Society defines the term:

When a treatment completely gets rid of all tumors that could be measured or seen on a test, it’s called a complete response or complete remission.

Or:

A partial response or partial remission means the cancer partly responded to treatment, but still did not go away. A partial response is most often defined as at least a 50% reduction in measurable tumor. Here, when we refer to a remission it will generally mean a partial remission.

Today, Josiah’s tumor is the exact size it was after his resection surgery back in the summer of 2009. 18 rounds of chemotherapy stopped it in its tracks, but the truth is Josiah will never live cancer-free, or in remission. “Stable” is the best term we can hope for.

Josiah’s cancer being classified stable is the result of the millions of dollars that St. Jude Children’s Research Hospital here in Memphis has poured in to his care.

It is the result of of research in to his type of cancer, thanks to the parents of children before Josiah.

It is the result of our hard-working medical care team.

It is the result of hours and hours of prayer on his behalf.

All any of us are given is today. When your kid has cancer, this truth is hammered in to your very being every single day. I’ve lost a lot of days with Josiah to work, this website and other things in my life, but for a week in April, none of that will get in the way. We’re elated to get to have this opportunity to have a week of fun with our family; we’re humbled, however, as well, knowing that many of our friends haven’t had this chance.

I wish they had. I wish that the new families that land in Memphis every day with the crushing weight of cancer on their souls get to enjoy time like we will.

We’ve watched countless families come to St. Jude over the last few years and leave, after their children have lost their battle with brain cancer, but we’ve also seen many, many “little friends” emerge victorious from the fight of their lives. I’m thankful for the time and memories Make-A-Wish is giving us, and I know I’ll treasure them, now matter how long Josiah is with us.

Living It Up

No hospitalizations in almost a year! God knows, this is to be celebrated! Josiah's tumor remain stable. He hasn't had any seizures since last March. His medication dosage remains the same since he hasn't gained any weight-- just getting taller. 

I read back over some old posts from 2010, and I didn't realize how much I've already forgotten (or blocked out) about his treatment and our experiences. That wasn't too long ago.

Josiah has a favorite song from Mother's Day Out that he just loves to mumble around the house:

God's been good to me!

God's been good to me!

He holds my hand, He helps me stand

God's been good to me!

Guys, it is all I can physically do to not grab him up and call out to God through tears. I am so thankful for my son and daughter.  Josiah doesn't even know what he's been saved from. But when he does grasp it, I pray his whole self responds in humility and thankfulness, not bitterness. 

Josiah's next scan is April 10th. He has a psychology appointment in a couple weeks just to check on his learning and make sure his therapies are meeting his needs. We continue to go to St Jude every Wednesday for speech, occupational and physical therapies. He and Allison love Wednesdays. :)

This weekend was a big one for Stephen because The Ray and Joan Kroc Center   opened! Stephen came on staff as the IT director exactly three years ago this month, and it's finally a real building full of real people! We will be up there at least three days a week between the splash park, swimming pool and fitness area. Way to go, Kroc staff!!

Guess which one of my children is introverted?
 J Money will be available for autographs as soon as he can write his name.

GoJGo!

Thank you so much to everyone who came out to cheer Saturday!

Over 18,000 runners...
Every race sold out...

GoJGo raised $15,284 to date, and every day that number is a little higher!
Thank you so much!

Total $5,884,754.80 was raised for St Jude Children's Research Hospital.

Incredible.

It was good to see BelleBelle and Arianna's parents running this year! Team Ingram was also well represented! Way to go, Dismuke sisters!!

This year I realized that St Jude Memphis Marathon day is my favorite day of the year. How was I not involved in this before Josiah's diagnosis?? It should be as uniting for our city as the Memphis Tigers going to the playoffs! Only Memphians understand that :). It is deeply personal to me now, of course. I am so touched by those of you who support us by training your body and sacrificing your time to fundraise for St Jude.

What always gets me is when I'm picking up cheering supplies at the 'Heroes' station. There are all these stickers, pompoms, tattoos, signs, cow bells, and more. And for some reason that is always when it hits me that there are thousands  of people doing this!
Thousands of people caring for children that they don't even know--
Thousands of people motivated to help my son and others they have never met--

...and I stand there and silently sob as I pick up our cheering supplies, because God (and Stacey H. and Tracy) knows, I cheer until I lose my voice.

Aand I'm tearing up again. Well, at least I only cried once while I was cheering.

"Thank you" is what I set out to write. So, thank you!

A St. Jude Christmas

Last night, we took the kids to a St. Jude Christmas party at Wolfchase mall. There were rides, face painters and even a place to decorate your own cookie!

Aaaaaand we took the most awkward Santa photo ever: