Our Recent Visit to Memphis

Dillan's checkup at the end of July was turned into a mini family vacation. We took all of the kids and my parents so we could enjoy some fun in Memphis. We traveled up on Saturday, July 27 and took our time getting there. Once we arrived in Memphis we enjoyed a yummy dinner at On The Border in Germantown. 
Sunday we had fun walking the entire Mississippi River at Mud Island. Isabelle and Ethan loved it and wanted to stay all day!

We enjoyed watching leaves and stick boats make their way down river. After our walk over the same bridge Tom Cruise ran on in the movie The Firm we rode the monorail back and headed to lunch. For lunch we decided to try The Spaghetti Warehouse. It was delicious! An added blessing for us, it was National Lasagna Day and their yummy lasagna was on special :) (I love a good sale)! 

After stuffing ourselves we decided to drive to Arkansas. Memphis is on the edge of the state line so it's literally just crossing a bridge on I-40. We drove to West Memphis and stopped at Walmart. I totally forgot to stop at the Welcome to Arkansas sign and take a picture of the kids :-/We wanted the kids to see the Loraine Motel so we drove back to downtown Memphis. History takes on a different meaning in person. To see where Dr. King stood and was killed is heartbreaking. 

Dillan's first appointment was Sunday evening so after our visit to the Loraine Motel we headed over to the hospital. Tim, Dillan and I got checked in at the Memphis Grizzlies House and we let the kids play for a little while before walking over to the hospital for the dreaded blood work appointment. Chandler decided to come back with us and I think it was good for him and Dillan. Chandler was able to see how hard this is for Dillan (he was very supportive and helpful when we had to hold Dillan down). Dillan appreciated his brother showing he cares :). We made it through getting the dreaded IV and walked back to the MGH to enjoy the family area a little longer. Unfortunately a game of air hockey was a little too much fun and Dillan accidently pulled his IV out. He was distraught to say the least. We stopped the bleeding and walked back to the hospital.

Nurse Ron took amazing care of Dillan and had him smiling again (Dillan said he did such a good job he'd let him put an IV in his other arm). Ron is an amazing and caring person and even checked on us the next day as he was coming into work and passed by my parents in the front lobby.After all that excitement we drove to the hotel to get our things for the night. Dillan wanted Gammy to sit with him for his MRI so Gamp stayed with Chandler, Ethan and Isabelle while Tim drove us back to St Jude's. (we booked a hotel in Germantown which is about 20 minutes from the hospital). Our day of appointments started with his 12th MRI at 6:45am. After it we grabbed some breakfast in the Kay Cafe (Kay Jewelers is a big supporter of St Jude's). Then Daddy, Gamps and the kids arrived so we headed to turn in the tabs and donations we had collected since our last visit in March. We had a little time before Dillan's next appointment so we played air hockey (this time without an IV so no worries) and Isabelle had fun on the playground at MGH. Dillan had a heart echo scheduled and he wanted Gammy and Gamps with him. I had to walk in with them for any questions but when I was going to leave he asked me to stay (rare moment that he wants me). The results were normal! Yay!! We headed to our next appointment which was OT. He did fine. She reminded him to take his time when writing so he can regain proper letter formation. Overall he's doing good :) For dinner we rode the trolly to Beale Street to Dyer's to try their famous burgers. They were good. We rode the trolly back to the hospital so we could enjoy craft night at MGH (some nights various local businesses, churches, etc.will come with dinner and/or something fun for families to do). Isabelle made a lightening bug while Dillan and Ethan made little aquariums.

Afterwards Dillan wanted to take everyone to one of his favorite places Menchie's (it's a frozen yogurt place similar to Chill). We all enjoyed a yummy dessert and played on the game table (a Samsung touchscreen smart table). Then daddy, Dillan, Ethan and I dropped off everyone else at the hotel and headed back to St Jude's. Our last fun thing before heading home was a yummy lunch at Memphis Pizza. Isabelle enjoyed it so much she asked to be excused to find our server and order another cheese pizza (she's one independent 5 year old). Before we started our drive home we dropped Tim off at the airport to fly to DC for work. 
Now for Dillan's MRI results. Dr Wright is always such a pleasure to talk with as is our entire medical army :) His MRI shows slight growth (1 millimeter). Since there was growth his past scans were reviewed and they were able to determine it took about a year and a half for this amount of growth. At this point he will continue to be watched and closely monitored for any further growth. The neurosurgeon did not feel surgery was necessary at this point. This is a minor bump in the road and we keep our faith in God and His amazing plans for Dillan. As always we appreciate the love and support everyone has shown us throughout this journey. We could not make it through this without all of our prayer warriors.

Camp Rap-A-Hope was AWESOME!

Dillan attended Camp Rap-A-Hope this year for the first time. He wasn't sure if he wanted to go so being the mean mom that I am I decided for him. I absolutely do not regret my decision. He was a nervous-wreck on our way to drop him off.

Once we arrived and went thorough the check-in process I could tell Dillan's nerves were beginning to settle a little. We ran into one of his classmate's big sister, Sydney.  She's been before and was ready to show him the ropes. 

Then two of his counselors, Matt and Will, came over and told him he better be ready for a week of fun!  Ice cream before bed every night, fishing, horseback riding, no chores, swimming and many more things would make this an awesome week. 

As he went off ready for fun (with a little anxiety on being away from home) we left to head home without him. I'd be lying if I said I was perfectly fine with all of it but in my heart I knew he needed this experience and forced myself to drive away. Every once and a while I allow myself a weak moment and that Sunday was one of them. I knew Dillan was going to be well taken care of and he was going to have an incredible week but I cried just the same. 

Monday morning I receive a phone call from Melissa, Camp Rap-A-Hope's Executive Director, to check on me and let me know Dillan was doing great! I was touched she called to see how I was doing and extremely happy he was having fun. 

Tuesday my friend and fellow Gifted Ed Teacher, Talia, was at camp and checked on Dillan. She snapped a picture of him having a good time. I appreciated another update and cute picture of him with one of his favorite counselors, Brandon. 

Dillan knew a friend of ours from church, Whitney, would be making breakfast for all the campers and USA Children's and Women's provided breakfast on Wednesday. Whitney said he ate really well and gave her a big hug. From what Dillan said they had very good food throughout the week provided by many local businesses and groups. The Pilot Family, the owners of Camp Grace, not only donated the week at Camp Grace but also cooked something very yummy, too!

Two of our local news stations came out and filmed the campers enjoying a week of fun! Fox10's story Camp Rap-A-Hope is Underway and WKRG's story Summer Camp Inspires Children Diagnosed with Cancer! 

On Friday in the mail a very sweet surprise arrived. The postcard from Dillan made me so happy and the postcard from his counselor, Joe, made me very proud. 

The week flew by and when Saturday morning arrived I was up bright and early, ready to pick Dillan up so we could hear about all the fun he had. We pulled up to find him running around and enjoying spending his last morning with the counselors he grew to love over the week. These special men and women came from various parts of the country to spend the week with Dillan and the other 77 campers and ensure they all had a fabulously fun week. I am in awe of them. We snapped a picture or two before we gathered Dillan's belongings. 

He wanted to make sure we took pictures with as many camp counselors and staff as we could before he left. 

He had an amazing week including a visit from the tooth fairy! As we were hearing about his week he remembered his newly lost tooth and showed me where he has a new temporarily empty space. When he told me the tooth fairy visited him I was overwhelmed. Words can not convey how much everything everyone did to make his week special means to Tim and I. I know "making" him attend camp was the right thing to do. He knows he is not alone and other kids understand what he's going through. We all wish all types of cancer could be cured but until then I am thankful God inspired everyone associated with Camp Rap-A-Hope to do all they do to have "Fun for Kids with Cancer!"

Latest St Jude Check-up

We went to Memphis the week after Thanksgiving so I am a little late in posting this (along with a post I haven't finished regarding the beginning of school LOL). Dillan is still stable and there is no new evidence of disease which made a very Merry Christmas for us! While we were visiting Dillan had the pleasure of attending a very special Christmas Party hosted by Window World. The company has their corporate Christmas party at St Jude for all of the patients rather than spend money on a lavish party for themselves. We were amazed by their generosity and kindness.

Window World Christmas Party

OCC St Jude Chopper

 At the party we enjoyed painting an ornament, decorating a cookie, making a foam craft and a very yummy breakfast! The Danny Thomas/ALSAC Pavillon was decorated in a Winter Wonderland theme and the OCC St Jude bike and the Indy 500 Stinger were on display! The company also provided a new toy for every patient (Dillan went straight for a new Lego)! Dillan even chatted with the CEO, Tammy Whitworth.

After our E Clinic appointment I remembered to snap a picture of Dr. Wright.

She told him after she squatted next to him all his friends are going to wonder about his doctor since in the picture they look like they're the same height. We love our St Jude family and their happy nature with us!

As we traveled home Dr. Wright called to give us the official results of Dillan's latest MRI. They were backed up a bit due to three new patients being admitted (makes me sad for those families beginning their journeys).  She was excited to tell us his tumor and pocket of fluid area are stable. Plus some of the areas we thought would be permanent brain damage, due to his large tumor size and brain surgery in general, showed signs of improvement! She was as excited by this as we are...God continues to heal Dillan and amaze all of us with another miracle!

 Dillan being very brave after his IV clogged and caused his vein to burst...

 Our preferred means of travel includes a few redbox DVDs! We can rent them before we leave and return them when we get there!

 Dillan was very excited he was given a new blue hat

Thank you for your continued prayers. Dillan's next check-up is in March :)

Our Recent St Jude Check-Up

Occasionally I allow myself to think and reflect on August 26th, 2011. By no means for a pity party but as a reminder of all the blessings God has given us throughout Dillan's journey. That date, as some great friends who've been on the other side of a similar date twice now, is when EVERYTHING stopped working the way we thought it always would and our new normal began.
One of the many blessings we've received is God putting such amazing people at St Jude. We love everyone we've had any contact with when there and over the phone. It is truly an amazing place of HOPE!

I meant to take a picture of Dillan and Dr Wright but I forgot :( She is, along with all of Dillan's medical army, amazing and kind. The nitty gritty of his check-up is the following:

Speech: He did great with his language abilities and vocabulary recognition. His voice continues to get stronger and his swallowing is much better (hard to believe 10 months ago he was adjusting to eating again after being on a feeding tube for a month). He still has difficulty with his soft palette but Kelly thinks we should monitor it and make a decision on any future treatment in 6 months to a year :)

Physical Therapy: Dillan received his shoe inserts and when he saw them I think he finally realized no one will know :). He still has a lot of balance issues and in time these will hopefully correct them or at least make them better.

Eyes: The doctor wanted to check his peripheral vision for a follow-up with this machine ( I had to snap a picture).

After he took the test we waited for his results and I told Tim I thought he might have been trying to "beat" the test. Surprise! I was correct! His doctor said his results were quite bad and showed him having a huge decline in his peripheral vision. We all explained to him the point of this test is to show how he's doing and make sure he's improving.

MRI Results: The biggest news is the tumor left behind is still not growing! He still has the area of concern but it seems to be a bit better. There is a contusion which will hopefully heal over time. We found out he has some nerve damage as well but in light of everything we've been blessed with we can happily except a small amount of brain damage. Since he's doing really good and it has been almost a year Dr. Wright has moved him to come every four months!

While we were there we tried to grab a few fun moments:

Like taking a minute to drive a very excited Dillan to Arkansas! It literally was just a few minutes from St Jude. Funny thing it took us driving across twice for me to snap a picture of this sign LOL

We celebrated good MRI results with some yummy dinner!

I wish I could take his place and so does Tim. His nerves are getting the best of him when we went for his blood work and IV for his MRI. Then Nurse Kelli and her sweet husband came by to visit! they brought him treats and she made him another blanket to keep warm with during his MRIs. They brought a huge smile back to him!

His eye doctor let Tim and I check our 3D vision. Dillan's is getting better!

Memphis looks beautiful from the bridge :-)

Crossing the state line AGAIN!

This pyramid is just down the street from the hospital. It was a sports arena but now Bass Pro Shop has a sign out front. 

Out for a little drive

We had no idea Memphis was the

Dillan wanted to go for a walk and see the St Jude statue.

Our home away from home, Memphis Grizzles House.

Our evening view

My morning stroll across campus is very peaceful and beautiful.

During our recent visit there was a heat wave so I thought about jumping in but I do not think the firemen checking the hose would have appreciated it.

Memphis has some really neat stuff to see...like Giant Catfish on Mud Island!

All Aboard the River Boat!

Mississippi River

Dillan finally made it to Mud Island! He has always loved maps so the Mississippi Riverwalk was right up his alley.

As we traveled home a beautiful rainbow appeared!