MRI this Thursday

We had a great Memorial Day weekend. Joseph's friend, we'll call him Yogi, and our friends from Atlanta came up and we had lots of playing and fun. Joseph was so sad they had to go back.

We leave tomorrow for Memphis for the three month MRI. We have three days of scheduled tests and meetings, and Joe will have his port accessed tomorrow night. This will be the first time they've left the needle in overnight since radiation, so we are not anticipating a good night's sleep. He always freaks out with any blood draw or IV, so please pray for him to be strong and calm. The MRI will be first thing Thursday so we'll know the official results by the end of the day.

We are emotional and apprehensive about this MRI. He isn't showing any signs or symptoms of regrowth, but there could still be some growth. I guess this is how every MRI is going to be for a while. Please continue to pray for him and for us.

Also, if you've been following the other three year old boy with GBM in the links section, he is not doing well and is not expected to live much longer. Please pray for him and for the family.

Home again!

At Sea World





The train at Give Kids the World

Carousel at GKTW
Grandma came from St. Pete to visit on her birthday

We had a wonderful trip to Disney World. We were joined by Nana, Grandad, David, Mimi and Big Daddy for the first few days, then we were on our own the last half of the trip. We stayed in a great little "village" called Give Kids the World. It was basically a mini Disney with everything from a carousel to putt-putt golf all included. We stayed in a 2 bedroom villa and they had all kinds of events planned, including meeting Disney characters and parties and train rides. It was really an amazing place, run mostly on a huge team of volunteers. At meal times, at least 3 people would come up and ask if you needed more food, drinks, or help in any way.

We got to go to Magic Kingdom, Sea World, Universal Studios and Hollywood Studios. I think our favorite was Sea World b/c there was a huge fountain play area and we got to feed and pet dolphins. It was just a really interesting park and they had so much for toddlers to enjoy.

At first, Joseph was really scared of anyone dressed up, but after meeting Mickey Mouse he overcame that fear and then loved meeting Lightning and Mater, Woody and Buzz Lightyear, Barney and friends, Pinocchio, and even a special visit with Cinderella in her "private chamber." Holly was a little overwhelmed with all the activity and heat, so she and I rested for a little while at a special room in Disney for Wish families. They had couches, toys, Disney movies and drinks available to get refreshed. She loved spending time in there (as did I). We decided we could never go back to Disney as just regular people b/c we got such special treatment this time it would be hard to go back. We got to go to the front of every line and even got free parking and stroller rentals.

Make-A-Wish really went above and beyond, providing airline tickets, park tickets, spending money, and a car rental. We are so grateful for this amazing memory. We had so much fun!

Off to Disney

We're leaving tomorrow for Joseph's Make-a-Wish trip to Disney World and the kids are very excited. Joseph keeps saying he's going to see Mickey Mouse even though I don't think he has ever watched a Mickey cartoon. Holly has been asking for days when we were going on an airplane. So we'll be back next Friday with lots of pictures and videos.

Here are a few pictures from the past weekend when cousin WK came to keep us company during mommmy's birthday trip. My sister bought a bunch of dress up clothes at a garage sale and they were all princess costumes, but they told Joseph that his Snow White top was a king's costume and called him Sir White. Of course they didn't tell Daddy that he was wearing princess clothes until it was too late. But we got some good pics from it.

Missing Mommy

Gillian is away with her mom and sisters for a birthday beach trip and we're missing her. The house has turned into the lord of the flies, except with less order. We're surviving somehow.

Joseph got a huge package in the mail yesterday and he was so excited to see a brand new Lightning McQueen power wheels car. Thanks so much to the Shims who sent it to us. He hasn't been that excited in a long time.

a message for mommy:


The new car

Holly's Risky Business

Our Country Walk

We've started taking nightly walks around the neighborhood after dinner. As you can see, the kids are really into dandelions right now. Joseph did well at his doctor's appointment, dreading it the whole way there, but only cried for a little bit when they drew blood. He is doing great and is almost back to full speed running and playing. Thanks for praying for his visit. It went better than expected. Next visit in May we go back to St. Judes for another MRI.

We heard back from the Make-a-Wish people and we are all set to go to disney world in a few weeks. We had no idea what to wish for since all Joseph wants is his toys and his grandparents. Asking him what he wanted didn't work, he just said a new car. So we figured a Disney vacation would be best. Actually I told the people that his wish was for infinite wishes, but that's apparently one of the things you can't wish for. The kids are going to have a great time and we are really looking forward to it.

Thanks for continuing to pray for us.

Breaking in the New House

Cousin Eli came to visit in ATL before we moved Last time for Bouncin Bob New Hair cut and nose job The little Princess Joe's new room

Joseph and Holly have started breaking in the house with their patented style of destruction and chaos. We have enjoyed our first week in Franklin and the kids are loving being so close to their grandparents and uncles Dave and Matt. Earlier last week we finally convinced Joe that it was time for a haircut. We were tired of the question from strangers: did he try to cut his own hair? On a side note, kind of like asking if a woman is pregnant, never do this. Anyways, Big Daddy, Holly and I accompanied him, and he did great until the end when he started crying saying, "What happened to my hair?" He didn't really like the buzzed look, but it looks a lot better than the weird patches he had before.

He is doing fine right now; we go this week for his first oncologist visit in Nashville for blood work, so you can pray for that to go well. He usually has a major freak-out when he realizes someone's going to access his port. Next month we'll go back to St. Judes for another follow-up scan.

I found out about another three year old boy who has GBM a few days ago on the internet. We put up his link to the side. Please check out his website and pray for him and his family as well.

We made it!

We had a great moving day on Saturday. Thanks to all our friends both in Atlanta and Franklin who helped move furniture and boxes. Special thanks to Big Daddy and John, who drove to Atlanta, helped load the truck, then drove back to Franklin. What troopers! It only took one hour to load up the truck in Atlanta--after BJ and Allen loaded up some of the heavier items. Then in Franklin we had many friends waiting to help us move in. The biggest surprise was that our house had been decorated and furnished (in many rooms) and the kids' rooms were painted and decorated in "Cars" and "Princess" themes. Can you guess whose room got the "cars" theme? We were shocked and so thankful to receive such an amazing gift. The kind people who did this are part of a small group from church and they worked together to make the house very warm and welcome for us. Thank you, Steve and Glenna's small group!

We are really getting settled into our new home, with just a few more boxes to go (and a garage full of stuff to weed through). It is just an amazing house and we are so thankful to be able to live here. It is really out in the country compared to our Atlanta home (our road turns into a dirt road!), which I LOVE, but it is only a 10 minute drive to Kroger or Publix. I have yet to find a Target within 10 minutes, which I will have to learn to live with. :) Many of you know my special relationship with Target. But, the peaceful surroundings far outweigh any proximity to my favorite store.

Joseph is loving his new surroundings and has slept wonderfully so far! No night wakings and he even slept until 10 one morning...a feat never before accomplished. He is still full of life and just so thrilled to be so close to his grandparents. He has another checkup next Thursday for bloodwork (this one is a little early b/c St. Judes need his labwork to send us his chemo drug). We continue to be amazed at his resilience, his sweet personality, and his advanced humor (we think it is for a 3 yr. old). Every day I am reminded what a precious gift from God he is and I just want to treasure every moment.

Before we left, our friends in Atlanta threw us a going away "extravaganza" as Rhianna rightly called it. They rented a fun place called Atlanta KidZone, and the children were all completely entertained while the adults could mingle and talk. It was just wonderful! Here are some pictures of the party:

Update

Joseph had his first neuro-oncologist appointment on Thursday to draw blood (which we have to do each month as part of our clinical trial) and do a checkup. They had to access his port, which he was upset about, but the whole process only took about 30 seconds due to two wonderful, efficient nurses (one was helping me keep him still). Dr. Janss said he looked great and he actually smiled for her and let her check him out without a fuss. So, they will send the results to St. Jude. I don't know exactly what they measure but we usually get a long page of different things and they let us know if something is low or high.

We have started packing up the house and plan to load it up Saturday morning to be in Nashville on Saturday. Thank you, Steve, for letting us use the moving truck! So, any strong and buff men or women who like to move heavy things, come on over and we'll let you test your strength on our furniture.

We are really going to miss our dear friends in Atlanta. After 7 years here we have made some wonderful friends and memories. But we are also hopeful that this move will be a great thing for our family and that the children will thrive in their new environment (nothing can compare to Mimi and Nana's house!) In fact, when the Make-A-Wish people asked where he would like to go, he said either Mimi or Nana's house (I cannot remember which, although both are like Disney World to him).

It will probably take several days to get our Internet in working order, but we will post again once everything is set up. Please pray for our move, that we will all get up there safely and that the kids make a good transition to their new home (and that something in the TN air will make Joseph sleep soundly at night :)).