Thursday Morning

December 1st, 2005

It’s been a great week. Tommy was able to leave the ICU on Monday night. He was moved to the third floor.:)
Aflac sponsers a Childrens Cancer wing at the hospital. Pretty nice place. Play room for the kids, kitchen, family room, and now we can sleep in the same as Tommy.
Last night Tommy was able to eat solid food for the first time. Chocolate pudding, apple sauce, and a few soda crackers. Maybe next week he can start off with happy meal.
He still seems a little disoriented at times and is very weak, he’ll probably stay in the hospital until Christmas.
The hair is really starting to fall. I shaved mine so that he wouldn’t feel all alone.
dad and tom


Monday Morning

November 28th, 2005

We woke up this morning full of smiles and giggles. We were able to ride over to radiation via the Emory Tunnel. No trucks, just a good long walk thru the underground hallways.
The hair on the back of Tommy’s head is almost gone. I’m going to go home tonight and shave my head. We’re trying to talk Tommy’s 16 year old brother J.J. to do the same, we’ll have to wait and see
I’ve started posting to a new web blog. I’ll still post here, but the new site will be easy to remember.

Barbie Hair

November 27th, 2005

Each day gets just a little bit better. If you look at today and yesterday there’s only a small amount of change, but If I compare today and two or three days ago, it’s a huge amount.
Tommy was able to get out his ICU room for a few minutes today and go for a wheelchair ride. Robin and one of the nurses, Miss Trisha ;) , took him down to see the fish aquarium and buy a few things from the gift shop. tommy picked out a little squishy “porcupine” ball. It must of felt really good in his hand, he held onto it for most of the afternoon. I think it’ll be good therapy for him to play with.
The hair is really starting to fall out. The back of his head that sits againts the pillow is “Mel Palmer” smooth. I can run my hands through his hair and it just falls out.
On Monday we start another week of radiation treatment and maybe we’ll get to leave the ICU. We’re crossing our fingers and saying our prayers.
A million thanks to everyone, especially the prayers. They’re working.


November 26th, 2005

Today we made our schedule run to the Winship Center for our radiation treatment. Everything went well. The treatments only last about 2 minutes.
Tommy did the whole trip without the ventilator. With no ventilator to hold us back, we’ll be able to go to the third floor on Monday.!!!!
We started to find a few strands of hair on Tommy’s pillow on Friday. Today you can softly pull it from his head. No problem. He’s full of smiles and laughs when we talk to him. That the important part. ‘I’m getting ready to shave my head, It’ll be a small price to pay to show my son some solidarity.
Maybe I can get the radiation team to help me with my back hair. ;)
Tommy’s still shakes when he moves his arms and legs, but it isn’t as bad as yesterday. Tomorrw we should be able to load him up in a wheelchair and go for a ride to the fish tank……Yeah!

Elephant Tranquilizers

November 25th, 2005

Tommy is breathing on his own during the day. He has a hose hooked up to his tracheostemy but it only supplies warm moist air. His lungs are doing all the work.
Last night was a rough one. Tommy had a dry cough that kept him up most of the night. He would just start to nod off and then he’d cough. Also his medicine pumps were beeping most of the night. I figured after this mornings trip to “radiation” that he’d be tuckered out. The nurses usually give him a good dose of Pentabarb before the trip. Today he had two shots of it and it only made the little guy smile. I was hoping that it would knock him out for a few hours and let him rest.
Thanks again for everyones support and prayers. I’m going to change my name from’”Grumpy Pants” to “Cry Baby Pants. ;)

Nov 24, 2005

November 24th, 2005

The “Evil Twins” are gone, along with the Methadone and Valium. Today Tommy is breathing on his own with only a little bit of help from the ventilator. Tommy’s body still shakes when he moves. There’s no sign of seizures. One of Tommy’s tumor Doctors described it that his nerves along his spine and brain are starting to open up and do their job. This process might take a week or two. Tommy will answer small questions by squeezing our hands or shaking his head. He’s stating to watch and listen to his favortie “Sponge Bob” DVDs. We should be out of the ICU by next week. We would like to go right to the 4th floor, where the hospital has a Cancer Center sponsered by AFLAC, but if we still have to be on a ventilator we’ll go to 6th floor.
Happy Thanksgiving.


November 21st, 2005

It’s been 4 days since Tommy’s surgury, some good days a some not so good. The Doc’s still have Tommy sedated.
Saturday they tried to wean him off of the morphine and vercet, but the Valium and Methadone didn’t cut it. He became very aggitated and twitchy. He had to go back up on the morphine and vercet. Robin, my wife, has started calling these two drugs “The Evil Twins”. The Doctors and Pharmacists are trying to come up with a new plan. We did have good news from our “Lump in the Head” Doctor. Tommy’s CAT scans are not showing any more swelling in the brain and the Ventrals are opening up to drain.
I really can’t tell you all how Thankful we are to all of you. Your prayers, thoughts, cards, and gifts have overwhelmed us. We are truly blessed to have friends like all of you. Today while we went to radiation treatment, one of the nurses there asked me how I new a certain family. The fact was that I had never heard this name before, but someone must have passed our name to them and they had put our name on their Church’s prayer list. I was very touched and had to spend few minutes wiping the tears away.

First Week of Radiation

November 18th, 2005

One week down…..Five to go.
Tommy has been intubated and on a respirator since we arrived at the hospital. When he’s awake he has no trouble breathing, but due to all the sedatives and because of the tumor, Tommy has a difficult time breathing when he’s asleep. We were told last week that he’d probably need a tracheostomy and that most likely it would only be temporary. Yesterday afternoon he had the surgury for the Tracheostomy. Everything went fine, and he actually looks good without the breathing tube in his mouth. Tommy will have to spend the next 7 to 10 days in the ICU, but hopefully after that he will be able to breath on his own and we can go to the AFLAC Cancer Center on the 3rd floor


November 16th, 2005

I havn’t been keeping up with this. Sorry. Tommy was finally diagnosed with a brain Tumor. Our Doctor called it a PNET which means Primitive Neuroectodermal Tumor.

I’m just going to call it “BOB”. ON Saturday, November 12th we started kicking “Bob” in the butt. Tommy is on his 5th day of Radiation treatment. Every weekday, Tommy recieves a dose of CarboPlatinum, Then we take a short ride to the Winship Cancer Center, In a big Truck.
big Truck!

Then they load him up onto the Radiation machine. He has to wear a special mask to keep his head immobile
The treatment only last a couple of seconds, then it’s back into the truck for a ride back to the ICU. We spend more time packing him up and unpacking.
Here’s a shot of the machine and his mask.


Tests and More Tests.

November 13th, 2005

The Doctors didn’t know what was causing the swelling in my son’s brain. Large amounts of blood were drawn to send out for testing. Also, the took some of the “brain” fluid that had drained out and sent it out for tests.
Doctors of all flavors begain to visit us in the ICU. Infectious Disease, Nuerologist, Nuero-Suergons, and Hemo-Oncolagist. All asked the same questions. “Had Tommy been out of the country?” “Out of the State?’…etc
They still didn’t know what he had.They were testing him for every rare virus, parasite, and bacteria. It almost killed us when we heard it might be leukemia