Wednesday, February 25, 2004

 

Wolf Cub!

Monday evening was the Cub Scout Blue and Gold dinner and Devin got his Wolf rank. Below is a picture of the newest Wolf Cub of Den 5, Pack 566.



Tuesday, we went down to Vanderbilt for a blood draw to check his Prograf level. While we were there, we got to peek in the doors of the new unit. The clinic has moved over to the new hospital. It is a gorgeous place and I sincerely hope that we are never able to actual go up on the ward to look around. The only way we can is if we are admitted and no one wants that.

Devin was able to see Miss Linda while he up there. As always, no news is good news on our end!

posted by Devin's Mom 8:46 AM

Sunday, February 22, 2004

 

Three years ago

It was three years ago when I had an appointment for Devin since I was concerned about his lack of energy and eating. All the kids had been sick but it just lingered with Devin. Something was just off with him although there was nothing really that was the problem. It was everything and nothing.

I took him in for the appointment and a routine exam showed nothing was wrong. The doctor suggested perhaps it was seasonal allergies that was the problem. I expressed concern about Devin's color so a blood test was drawn. A heart murmer did show up so we made an appointment with a cardiologist. I took Devin home, not very confident in the outcome because it just was off...something was wrong with him and I knew it.

I got a phone call a few hours later asking me to take him to Vanderbilt for a blood transfusion. I was asked to take him to the Pediatric Hemoc/Oncology Clinic. I knew what those words meant but it didn't click in my brain...why would it?

I got Devin down to Vanderbilt where Dr Shankar and Dr Ho examined him and took more blood. Devin was such a brave little guy, just turned 5 years old, though all of this. He sat in the back and watched a "Clifford" tape while Dr Shankar talked to me. Even after being asked about a history of childhood cancer in our family, nothing prepared me for her next words. I can still see her saying them too me.

"We think Devin has leukemia."

Those words will be forever etched in my mind. I think those are the worst words I have ever had spoken to me ever in my life. They started Devin and this family down such a road three years ago.

There have been low points and there have been high points but overall, we feel that we have been truly blessed by so many wonderful people and events.

Miss Linda was Devin's nurse that evening. To this day, Miss Linda is one of his favorite nurses and he talks about her often.

What a three years this has been!

posted by Devin's Mom 8:37 PM

Tuesday, February 17, 2004

 

Gone! It's All Gone!

Not quite but the NG tube is HISTORY folks! We mosied down to Nashville today for Devin's appointment. Of course, the main thing on his mind was the NG tube since we got the hint that it may come out.

Both Devin and I cheered when he weighed in at 49 lbs, up from his last visit and he was 49.5 inches tall. The first question Devin had was "Can I take the tube out?"

Luckily, Dr Frangoul gave the thumbs up and almost before the sentence was finished, Devin had the tube out. I say luckily since Devin had been practicing his fake crying in case Dr Frangoul said no...silly boy!

Since the tube is gone, we asked to switch some medications over to pill form. His cellcept and prograf are still liquid and while not tasty, he said he can deal with it twice a day.

His blood pressure has been doing well so five days before his next appointment, we will stop his medication to see if it is still doing fine. If it is, then we can dump the Norvasc.

Devin is doing just great, jumping around and acting like a goofball often. Next week, at the monthly Pack meeting, he will be getting his Wolf Badge. He is a little bummed that he won't be going to Boy Scout Day Camp this year since it is being held the same time as Camp Horizon, the oncology camp. He missed out on Horizon last year and has been eagerly looking forward to this year.

The other piece of good news is that we are now going to every three weeks between visits!! Woo hoo!

There is a little spot on Devin's face where the tape tore skin when he removed his NG tube. Once that heals, we will get a new picture of him sans tube and get it up on the site.

Also, I have not forgotten vacation photos, I just have not gotten to it yet. Here is a small sample of one of them, to see a larger version, just click the picture.

posted by Devin's Mom 9:28 PM

Tuesday, February 03, 2004

 

Back to the Clinic

Despite getting in very late last night, we were back up early to make our trek down to Nashville for Devin's clinic appointment.

He has lost a little bit of weight since his last appointment. Dr Frangoul wants us to really push his feeds and beef him up. If he has gained weight by his next appointment, we will discuss pulling his NG tube to see what he does.

His counts are perfect and Devin is looking fantastic. We brought along a picture of us on Splash Mountain and Devin told everyone about the great time he had in Florida.

We were able to drop one of his medications so now he is only taking: Acyclovir, Magnesium with protein, Norvasc, Vefend, Amoxicillian, Prednisone, Potassium, Cellcept, Prevacid and Prograf. His Prednisone is every other day and we won't mess with that at all until he gets to his one year mark in June. We are slowly but surely getting there!

After Devin's appointment, we walked over to the floor so he could see his nurses. Miss Yolanda was there and she hugged on him while he told her about his trip.

So everything is looking good, we are trying to get some meat on his bones before his appointment on the 17th.

posted by Devin's Mom 11:24 AM

Monday, February 02, 2004

 

Final Day in Florida

We made sure that we had everything packed up the night before so we could leave right after breakfast.

Of course, the kids had to ride the carousel a few more times and Disney had some characters running around. Alice from Alice in Wonderland was there so the kids got her to sign their autograph books. We also got pictures of them with Goofy and Pluto.

After breakfast, we went to check out. In our checkout packet was a photo taken of the whole family with Micky and Minnie. We also got a one year passport that is good in many themeparks for free admission for the entire family. We made a donation and got the book written by the gentleman who founded Give Kids the World. Devin had written his name on a star that was placed on the ceiling of the castle. He got a star to take home to remind him of that. The kids were sad to leave, they wanted to stay for another month!

I forgot to mention earlier that each day, one of the Village volunteers comes into the villa and leaves a newsletter that details the happenings for the day, the menu and other information. It lists what is going on, what movie will be played in the theater and things like that. Along with the newsletter, they also leave little presents for the kids. We got videos, cars, stuffed animals and little candies. The kids loved to go back to the villa to see what surprise was waiting for them.

Our final park visit was Disney's Animal Kingdom. Iain really liked this park since he could ride and go into almost everything rather than be stuck in the stroller.

The first thing we did, after getting another primo parking spot that had us right at the front gate, was head to "It's Tough to Be A Bug". This is a 3-D show based on It's A Bug's Life. From there, we headed to the Africa section to take a 2 week safari through a game preserve. We saw lions, elephants, hippos, giraffes, rhinos, birds...all kinds of animals while on the little trek. Iain liked to see the elephants.

We headed over to the Lion King show and managed to get some front row seats. The show is a combination of a lot of live action dancing, singing and acrobats combined with large characters. Kierynn watched the entire show with wide eyes, she really liked it. It was an excellent show.

The kids wanted to go over to the Dino-Land area so we walked over there. Iain fell asleep and slept for a few hours while Dad sat and talked to other Dad's watching sleeping kids. The other kids and Mom went on many rides. Nicholas, Kaity and Ryan opted to go on the Kali River Rapids ride while Mom and Devin opted to stay dry. Everyone made there way over to the Asia section and went on a trail where we saw gorillas and tigers.

It was time for the parade so we watched the parade. Since we had to be at the airport by 6:30, we left the park after the parade.

One major gripe from Mom is that there are NO adult sized shirts with Simba on it. No where. Cub Simba is my favorite character and I have a 10 year old Simba watch that is on its last legs. I was bummed to not find a Simba shirt.

As we left Animal Kingdom, Nicholas announced that he wanted to spend his money on an alligator he saw at GatorLand yesterday. We had to go right past there so we thought we would make it. We had not counted on traffic. The gift shop closed at 5:30 pm and at 5:28 pm, we were almost 3 miles away in standstill traffic. We took the chance and pulled up. A man was letting people out of the gift shop and after explaining the situation, Nicholas and Dad went in to get the alligator. Nicholas was quite pleased to get his 2 foot long alligator.

We turned in our rental car and then waited for our plane. While we waited, Dad got us pizza from a airport pizza stand. The flight was only half full so we were able to spread out where each of the kids got a window seat. Iain was very tired by this point but didn't want to sleep.

A limo took us back to our van, which has also been washed and cleaned while we were gone.

A very tired but happy crew finally made it home to happy animals just after 11 pm.

posted by Devin's Mom 10:27 PM

Sunday, February 01, 2004

 

Blah!

Our day started off very early by a knock on the door at 1:30 am by Devin. He had gotten sick and his NG tube was out. I asked if he wanted me to wait until morning to put it back in but he was a trooper and asked me to do it right away.

By morning, Devin was not feeling any better but had no fever at all. We were pretty sure that he had gotten whatever Kierynn had a few days prior but were keeping a close eye on him and ready to call back to the clinic if he got any worse.

Since he was feeling badly, that cancelled out our plans for the day. The rest of the family went over to breakfast at the Gingerbread House and then wandered around the Village a little bit.

Mom, Nicholas and Kaity decided to go fishing and after a few hours and 2 slices of bread, we managed to catch 9 fish.

Following lunch, Dad decided to get the kids out of the house to give Kierynn and Devin a chance to get some sleep. Mom stayed at the villa with them while Dad took the others to a nearby attraction.

GatorLand is located less than 10 miles from where we were staying.

It was a pretty neat park and everyone enjoyed it. Nicholas and Ryan got into a fight over a viewing station but overall, they behaved. We did get a picture of Kaity with a large boa around her neck and the boys holding a 3 ft alligator. There was an alligator that was rescued from the Tampa area, they called it Doggone. This gator developed a taste for dogs before he was captured. There were also a few salt water crocodiles and various other animals, including llamas.

Devin was feeling well enough when they got back to pout a bit over the fact that he didn't go to GatorLand with them. He went back to lay down while we went to dinner.

After dinner the kids wanted to go over to the SuperBowl party that was being held over at Julie's Safari Theater. Kaity had a spider and spiderweb painted on her face. The girls doing the painting wanted to give her a heart, a flower or something girly but she wanted a spider. Ryan got a big orange T for UT on his face.

The mayor of GKTW Village is Mayor Clayton, a 6 foot rabbit. He was elected Mayor for life and one of the benefits of staying here is to have Mayor Clayton tuck you into bed. We were the only tuck in for the evening so the Mayor's assistant called to ask if they could come early.

We got the kids back from the party and ready for Mayor Clayton. Mayor Clayton was dressed in his nightshirt. He signed the kids autograph books and headed back to the bedroom to tuck them in. It started out nicely, with the Mayor fluffing pillows but then it got silly. Rather than tucking them in, he pulled all their bedsheets and blankets off before throwing them back onto the kids. Sitting on the edge of the bed, he bounced as high as he could. The kids giggled hysterically while this was all going on. Kaity had socks on so Mayor Clayton pulled them off, reeling from the smell, and tossed them into the bathroom. Iain had been sleeping when this all began but he woke up and enjoyed watching everyone being tucked it. Mayor Clayton tucked all 5 kids into bed and then left.

Devin was feeling great by this point and had fun with the rest of them. He drank some Sprite and said he felt a lot better.

We got the kids settled back down and headed off to bed.

posted by Devin's Mom 12:01 AM