Steve had an appointment yesterday with Dr. Nick in Orlando to read his most recent MRI. This was the 1st MRI he’s had since adding his new chemo drug “BCNU” 6 weeks ago. The MRI did not show improvement and still showing growth. The Dr. believes that one cycle with BCNU is not an adequate measure of the new drug’s effectiveness. For now, he will remain on his current chemo cycle (Avastin every 2 weeks and BCNU every 6 weeks). He will have another MRI in June to determine if the chemo drugs are still helping. If there is still growth at that point, the next step will be to add radiation. Steve and Roxie are both still at their home in Clermont, FL. They have a nurses aide that comes every mon-wed-fri to help Steve get up in the morning. They usually have a visit from PT, OT or the RN in the afternoons. His PT (as usual) is amazed by his progress. PT has been working with him to “retrain” his brain to use his left side of his body. Because of the pressure the tumor (right sided) is having on his brain, he has trouble moving is left side of his body and trouble balancing. Steve is not in pain and is alert and oriented. He has his “mental moments” at times, but is still able to crack jokes and be himself. Planning has begun to try and get them back to South Bend for the summer (probably August/Sept). Steve is determined to be home for the Barron Lake Triathlon (in his honor benefiting the Racing for Steve-O foundation) August 30th!
Home Sweet Home!
Steve-O was sent home Saturday morning after 4 months of being away. Keep up the good fight!!
Youngest daughter, Molly and her husband Josh, Braylen (6), Malena (4) and Easton (2) are all there this week for Spring Break to keep Grandpa on his toes!!
Steve-O went into Orlando to visit his neuro-oncologist this past Monday. Dr. Nicks first reaction was surprise when he saw him, because he said the last time he saw him (ORMC) he didn’t look too good and he was sick. This time he said he looked good and seemed strong and alert, not what he was expecting. The MRI did show some progression, which was a larger hazy area, (more enhancement) compared to the last MRI. He said the Avastin is slowing down, but is more-than-likely keeping the area growing more slowly. He feels at this point it’s time to add BCNU to the mix and, possibly, radiation. This will be discussed at the next tumor board. Surgery is not an option, too diverse.
BCNU attacks the cancer cells in a different way. For best explanation, look it up-BCNU chemo treatment. It would be administered by injection every 6-8 weeks.
In the casual part of the evaluation, Dr. Nick said that he was not expecting Steve to be in as good a shape as he’s in , in light of the MRI, especially. That was a good thing.
He’s still getting stronger at Lake Bennett Rehab where he stays 24 hours a day for the past 2.5 months. Our goal is to get him home with home health care. He says he’s definitely planning on being back in South Bend for the Barron Lake Triathlon! He’s pretty excited about that and it keeps him working hard!
Thanks to Nick Weiler and everyone else involved with making this amazing video from Adams Swim Team! You guys are awesome! Especially love the quotes and tributes from the guys at the end of the video! BTTW!
Steve-O and his brother Jim taking dad on his 1st day trip in over 3 months! Getting stronger everyday!
Steve-O is still at Lake Bennett Health and Rehab in Ocoee, Florida. Everyday he gets a little stronger. He’s able to walk short distances with a walker during PT sessions. He’s able to stay awake longer now too. Roxie visits twice daily for meals and a walk in the wheelchair with him. Otherwise he’s busy with PT or an afternoon nap. He’s been away from home for over 60 days now. Our goal is to eventually get home again with home health. He had a MRI this week and we’ll find the results on Monday when he goes back to Orlando to visit Dr. Nick (neuro-oncologist). The tumor is growing very, very slowly (thanks to Avastin chemotherapy). If he didn’t have the chemo every 2 weeks, the tumor would grow very rapidly. We are so thankful that he’s responded so well to his treatments. Most people with Glioblastoma are not as fortunate, but we all know Steve-O is not like most people! He’s approaching the 2 year mark on April 24th for his diagnoses. He’s been amazing through all of this and continues to fight and keep his spirits up. His mind may not be as sharp as it used to be, but he often cracks a joke and let’s his personality shine! Roxie brings in “get well” cards from everyone almost daily. Many are hanging on his bulletin board in his room. If you’d like to talk to him, you’ll have to call Roxie’s cell at 574-323-6862. She’s usually there 11-2pm and 5-7pm. Cards can be sent to 742 Summit Greens Blvd. Clermont, FL 34711 Visitors are welcome, just call Roxie and let her know.
Nice visit last week with Sarah and Layne. Steve-O enjoyed the banners from Cole’s 3rd grade class and Triple Threat Triathlon team! He’s been working hard in rehab retraining his brain to walk again.
1st Annual Barron Lake Triathlon
August 30, 2014
Olympic:1500M Swim, 40K Bike, 10K Run
Sprint: 200 Yard Swim, 8.3 Mile Bike, 2.4 Mile Run
Individual, 2 Person and 3 Person Team Relay options available
Benefiting Racing For Steve-O
Steve-O has been doing well at Lake Bennett Rehab in Ocoee, FL. Although, he had a slight set back 2 nights ago when he fell out of bed and broke his wrist. He has been at Orlando Regional Medical Center (ORMC) these past couple days for observation, but should be transferred back to the rehab facility tonight. His brothers (Greg and Mike) and Dad (“Smitty” / 93 years old!) are all visiting this week. He’s still in good spirits and looking forward to getting back to rehab!!
Steve-O doing well in rehab. Stood up and transferred to wheelchair by himself with stand by assist. He says to tell everyone “I may be sick, but I’m still handsome !”
Sarah Ingle starts her marathon training today! 5 miles on the snow packed streets 3 degrees (felt like -10) for Steve-O!!
1st Annual Barron Lake Triathlon
Benefitting the “Racing For Steve-O” foundation
August 30th, 2013
Sprint: 200 meter swim, 13.2K Bike, 2.5K Run
Olympic: 1500 meter Swim, 40K Bike, 10K Run
www.barronlaketri.com (Registration opening soon!!)
Steve’s still in the hospital in Orlando (3 weeks now). He’s seizures have lessened and we think Dr’s may have gotten his seizure drug levels under control. Our hopes are that he can be discharged to a Rehab Facility this week to start working on getting his strength back.