Teddy Rodd's Journal
Written Jan 20, 2010 12:51pm
As the Doctor begins to leave Teddy’s hospital room…
Teddy: Wanna Brownie?
Doctor: No Thank You.
Teddy: Wanna Star Wars Cookie?
Doctor: Maybe Later.
Teddy: Wanna Rootbeer?
Doctor: Okay, you’ve talked me in to it.
This scenario is routinely played out throughout the day as Teddy gives away cool stuff from his private stash. I have yet to hear him offer a bite of his waffles though J
Speaking of waffles, Teddy’s school, Florida Mesa Elementary School, has planned Waffles For Teddy, a benefit breakfast January 26, 2010 between 07:20am and 07:40am. They need a head count by tomorrow (Thursday) morning.
Teddy says to his school friends, “I miss you all and hope to see you soon. Thank you for all your notes. From Teddy with the gnarly scar.”
Steve, Teddy’s Dad
Written Jan 19, 2010 11:08pm
Hello World -- Auntie Anne here to give you an update.
It has been a joy to spend the last two days with Teddy. I showed up yesterday afternoon to him looking so little and still very hesitant to move - my first time to see him. Although he was soo much better than he'd been it was a tough sight to take in. Well, after a full round of PT and OT times and hanging out with him - I am amazed!! Teddy has made such great strides just since yesterday afternoon and his courage to try and push through tiredness and pain with a GREAT attitude is just really wonderful to see. I'm not sure I'd be as sweet and kind as he is if I had his pain!!
Here are just a few things he can do that he couldn't do yesterday afternoon... Give hugs...hold on to us and pull himself up...eat chicken noodle soup alone without even one spill!!...turn his neck more and more to both sides... pull his neck forward to make sure he's finished up all the chicken tenders on his plate...stand up before his therapists even get to "3" - the last time today he pulled himself up before they even got their hands ready to help lift!...wheel his wheelchair forwards, backwards, and even turn it around which is really tricky! (He's gone on two visits to the hospital lobby, pushing the elevator buttons himself!)...kick, hit, volley and throw balls; do great money math picking up the coins with no problem...be tricky and find ways to do what his PT says to do while avoiding the exact movement they were looking for (the twinkle in his eyes giving away his very purposeful trickery)...and put together his new playmobile set! That's just some of the hard work going on.
Some of his enjoyments the last few days have been a Hardy Boys mystery, playing X-box; talking for about three hours straight today;seeing the visiting dogs; giving his brownies to his night nurse who loved them;sleeping on his side for the first time in months; being with "Uncle Scott" who is one of the most amazing "kid communicators" around (his explanations to Teddy on life realities right now are so great!)
Its 10:30 pm and he's fast asleep after a long day full of "appointments." (this is what he calls all his OT/PT times, doctors visits etc.) Tomorrow will be another full day with a group breakfast down in the hospital cafeteria at 7:30 (his Durango buddy Noah is there too) starting if all off. He's planning on some basketball dunks for his morning PT time and we'll see what other amazing things he's doing by bedtime!
Good night to you all! Thank you for your support and love from around the world!
Anne Winter - "Auntie Anne"
Written Jan 19, 2010 4:21amA Clearer Picture...
We just met with the neurooncologist. We now have a clearer picture of the past, present and what the next eight years may look like. Teddy has a very slow growing brain tumor. In fact, it’s actually been growing inside of Teddy for more than two years. This specific kind of tumor is often misdiagnosed because of its slow growing nature. For example some may think that the inflammation and pain is the result of whip lash from a soccer ball. Sound familiar? This is the best news we could have hoped for in terms of brain tumors. It’s treatable with only a 5% mortality rate.
Teddy will undergo what’s called a light chemotherapy for approximately 14 months. This treatment will start six weeks from now. In six weeks, his team of doctors here at The Children’s Hospital will implant a chemo port, take another brain scan for a baseline and then administer the first treatment. It’s possible that he will be able to return home to Durango at this point for the duration of his treatment. In terms of historical chances regarding this specific treatment, there is a 50% chance for a free and clear cure. In the event that Teddy is not cured after these 14 months, there is another new breakthrough therapy in the ranks awaiting FDA approval that may be perfect for targeting Teddy’s tumor. No matter the short term prognosis though, Teddy will undergo brain scans every 3 to 6 months until the age of 18. At that point if there is no reoccurrence of tumor growth and expansion, then he will be pronounced free and in the clear.
In the mean time, permanent neurological function is the main issue on the table. It’ll be a few weeks before we know what neurological damage was caused by the expanding tumor, the debulking of the tumor in surgery, as well as the remaining bulk of the tumor that remains in the brain and spinal column. The debulking was needed because the tumor was expanding and shutting down his body functions. Leading up to the last week before the diagnosis Teddy had lost 15lbs. He had also lost a significant amount of use of his arms and legs. His body was shutting down. Numerous times he said that he just wanted to die because of the pain and lack of sleep from the previous two months. Now that the tumor is debulked, it’s like the traffic jam in his neurological highway has been reopened.
Just because the highway has been reopened though, full restoration of Teddy’s neurological functions will only come back through at least 4 to 6 weeks of hard physical and occupational therapy here at The Children’s Hospital. Teddy is demonstrating a ton of courage as his therapists push him just beyond (sometimes way beyond) want he thinks he can do. For example, though he has very little feeling from the waist down and all the feeling in the world along the line of his incision, he can command his legs to hold himself standing upright by looking into a full length mirror with the steadying hands of the therapists at his sides. He says it feels like he’s floating in mid air as he pushes through his pain and tears. We’re very encouraged by his grit, determination and progress. Just a few days ago he couldn’t feed himself. Now he can pick up a piece of waffle or melon with his fingers and lift it all the way up to his mouth. His buddy in the room next door, with whom he actually played on the same soccer team in Durango, promised to teach Teddy some new wheelchair tricks.
Looks like Rob and Karen will remain junior high parents for awhile longer. Apparently Rob is smitten by Henri the pug. As a family, we’ll need to figure out how to tag team in both Durango and Denver these next 4 to 6 weeks. Teddy is now fast asleep with a look of deep content. It’s been a great day of hanging with Uncle Scott and Auntie Anne, flying his remote helicopter in the hospital room, touring the lobby downstairs in his wheelchair with his Winter cousins, standing up in physical therapy and feasting on fettuccine alfredo, bread sticks and of course waffles…