ajzepp Posted May 8, 2015 Share Posted May 8, 2015 Hang in there, MadCap...you're in my thoughts and prayers, brother. Link to comment Share on other sites More sharing options...
plenzmd1 Posted May 8, 2015 Share Posted May 8, 2015 Hi all, Â Last update from Ricks wife is they are still doing tests to find the root cause of his paralysis and to evaluate treatment options. He is still in hospital. Â If anyone would like to consider donating a dinner or anything else, just contact Tony( Mr. info) or myself and we can help get arranged. Link to comment Share on other sites More sharing options...
Mr Info Posted May 8, 2015 Author Share Posted May 8, 2015 Although I had seen Rick a few times since my last update there was not much to report but there is today. They performed a biopsy on one of the tumors and it was identified as T-cell Acute Lymphoblastic Leukemia (ALL) which is what he has had all along. He has been treated here for that with chemotherapy and later aggressively with an experimental drug (which they stopped) but resulted in paralysis. VCU is reluctant to recommend further therapy. ALL can become tolerant/resistant to chemotherapy so they are not recommending a return to that nor do they have a targeted immunotherapy trial for ALL. He is now looking at 4 places that may have clinical trials for T-cell ALL or experimental treatments for ALL: Roswell Park, Johns Hopkins, Cancer Treatment Centers of America in Philly, or U Texas MD Anderson Cancer Center. They have been in contact with all 4 and are getting his records to them. Rick is focused on ALL and addressing transverse myelitis later. Rick looked better and was in better spirits than the last few times I saw him. Part of that is they resumed steroid therapy which resulted in strength returning to his hands and arms. He is bummed that he has to resell his Rush tickets but remains excited about the Bills. He says hi to TBD. Link to comment Share on other sites More sharing options...
plenzmd1 Posted May 8, 2015 Share Posted May 8, 2015 (edited) Although I had seen Rick a few times since my last update there was not much to report but there is today. They performed a biopsy on one of the tumors and it was identified as T-cell Acute Lymphoblastic Leukemia (ALL) which is what he has had all along. He has been treated here for that with chemotherapy and later aggressively with an experimental drug (which they stopped) but resulted in paralysis. VCU is reluctant to recommend further therapy. ALL can become tolerant/resistant to chemotherapy so they are not recommending a return to that nor do they have a targeted immunotherapy trial for ALL. He is now looking at 4 places that may have clinical trials for T-cell ALL or experimental treatments for ALL: Roswell Park, Johns Hopkins, Cancer Treatment Centers of America in Philly, or U Texas MD Anderson Cancer Center. They have been in contact with all 4 and are getting his records to them. Rick is focused on ALL and addressing transverse myelitis later. Rick looked better and was in better spirits than the last few times I saw him. Part of that is they resumed steroid therapy which resulted in strength returning to his hands and arms. He is bummed that he has to resell his Rush tickets but remains excited about the Bills. He says hi to TBD. Thank you for the update Tony. Great to hear he is looking better, and lucky him he does not have to go to a Rush concert! Just remind him when you see him next he cannot keep my uber cool Bills cooler! Edited May 8, 2015 by plenzmd1 Link to comment Share on other sites More sharing options...
BuffaloBill Posted May 10, 2015 Share Posted May 10, 2015 Although I had seen Rick a few times since my last update there was not much to report but there is today. They performed a biopsy on one of the tumors and it was identified as T-cell Acute Lymphoblastic Leukemia (ALL) which is what he has had all along. He has been treated here for that with chemotherapy and later aggressively with an experimental drug (which they stopped) but resulted in paralysis. VCU is reluctant to recommend further therapy. ALL can become tolerant/resistant to chemotherapy so they are not recommending a return to that nor do they have a targeted immunotherapy trial for ALL. He is now looking at 4 places that may have clinical trials for T-cell ALL or experimental treatments for ALL: Roswell Park, Johns Hopkins, Cancer Treatment Centers of America in Philly, or U Texas MD Anderson Cancer Center. They have been in contact with all 4 and are getting his records to them. Rick is focused on ALL and addressing transverse myelitis later. Rick looked better and was in better spirits than the last few times I saw him. Part of that is they resumed steroid therapy which resulted in strength returning to his hands and arms. He is bummed that he has to resell his Rush tickets but remains excited about the Bills. He says hi to TBD. Thanks for the update. Link to comment Share on other sites More sharing options...
AiO Posted May 11, 2015 Share Posted May 11, 2015 Although I had seen Rick a few times since my last update there was not much to report but there is today. They performed a biopsy on one of the tumors and it was identified as T-cell Acute Lymphoblastic Leukemia (ALL) which is what he has had all along. He has been treated here for that with chemotherapy and later aggressively with an experimental drug (which they stopped) but resulted in paralysis. VCU is reluctant to recommend further therapy. ALL can become tolerant/resistant to chemotherapy so they are not recommending a return to that nor do they have a targeted immunotherapy trial for ALL. He is now looking at 4 places that may have clinical trials for T-cell ALL or experimental treatments for ALL: Roswell Park, Johns Hopkins, Cancer Treatment Centers of America in Philly, or U Texas MD Anderson Cancer Center. They have been in contact with all 4 and are getting his records to them. Rick is focused on ALL and addressing transverse myelitis later. Rick looked better and was in better spirits than the last few times I saw him. Part of that is they resumed steroid therapy which resulted in strength returning to his hands and arms. He is bummed that he has to resell his Rush tickets but remains excited about the Bills. He says hi to TBD. God bless you Rick and thoughts and prayers are going out to you and your family. Stay tough! Link to comment Share on other sites More sharing options...
mead107 Posted May 11, 2015 Share Posted May 11, 2015 Thanks for the update. Thoughts and prayers go out to you my friend. Link to comment Share on other sites More sharing options...
Bad Things Posted May 12, 2015 Share Posted May 12, 2015 Sending you positive thoughts and prayers from New Zealand. God bless you, buddy. Link to comment Share on other sites More sharing options...
Mr Info Posted May 17, 2015 Author Share Posted May 17, 2015 An update: Paul (plenzmd1) and I visited Rick at the VCU hospital on Friday (May 15). He was in good spirits and we had a lively discussion on Bills/Sabres and other Buff stuff. He is due to be released from the hospital on May 28 as long as he is physically able. They do not have any other treatment options for him. He and Brenda are still working with other possible cancer treatment locations (see my previous post) but they are a bit frustrated due to typical administrative functions (sending medical records). Rick is still battling with limited functionality in his upper extremities (arms and hands) but they have discontinued steroids to treat the spinal cord inflammation causing the transverse myelitis. On Sat, I joined some of Rick and Brenda's co-workers to build a ramp at their house for his wheelchair. A picture is below. The person in the pic is one of their friends. The 10' metal ramp (you can see part of it in the lower left of the photo) will be attached to the end of the wooden ramp. The ramp is all pressure treated wood and will be covered with roofing-type material for further protection and anti-skid. Posts and hand rails will also be added. Â Link to comment Share on other sites More sharing options...
Rubes Posted May 17, 2015 Share Posted May 17, 2015 Thanks for the update. He's lucky to have such a great support group. We wish him our best. Link to comment Share on other sites More sharing options...
Beerball Posted May 18, 2015 Share Posted May 18, 2015 Thanks for the update. He's lucky to have such a great support group. Yes, he is. Link to comment Share on other sites More sharing options...
rockpile Posted May 18, 2015 Share Posted May 18, 2015 Thanks for the updates, and continued prayers for Rick and his family. Â It is great you are doing this and I am sure he really appreciates visitors to talk about something besides his illness. Â Kudos to you all! Link to comment Share on other sites More sharing options...
Mr Info Posted May 23, 2015 Author Share Posted May 23, 2015 I visited Rick today and have an update. They have set appointments at Johns Hopkins on June 8, Penn State on June 10, and Roswell on June 16. Hopefully, one of them has a protocol/study/trial/experimental therapy that he could qualify for and get admitted. Â Rick is still due to leave VCU on May 28. Their van has been outfitted for a lift that will raise his wheel chair and place him in the front seat. Here is a picture of him filling out the menu selections for tomorrow. It was great to speak with him today and it is obvious that he is excited to go somewhere else where a treatment may be available. The strength in his hands and arms is rather limited and it is difficult to only assist him when absolutely necessary. But he is working hard to re-acquire his dexterity and strength and even small accomplishments are confidence boosters. Â Link to comment Share on other sites More sharing options...
Rubes Posted May 23, 2015 Share Posted May 23, 2015 Thanks for the update. Link to comment Share on other sites More sharing options...
Keukasmallies Posted May 28, 2015 Share Posted May 28, 2015 Prayers to Rick as well as very kind thoughts going out to Mr Info and plenzmd 1 for their caring and thoughtful efforts on Rick's family part. Link to comment Share on other sites More sharing options...
BillsFanM.D. Posted May 28, 2015 Share Posted May 28, 2015 Â Rick is still due to leave VCU on May 28. Â Â Please let us know how things go today. Still praying for him. Link to comment Share on other sites More sharing options...
shrader Posted May 28, 2015 Share Posted May 28, 2015 I've always pictured him as a gorn. Â Keep up the hard work, Rick. Link to comment Share on other sites More sharing options...
TSNBDSC Posted May 29, 2015 Share Posted May 29, 2015 Stayin Link to comment Share on other sites More sharing options...
LOVEMESOMEBILLS Posted May 29, 2015 Share Posted May 29, 2015 (edited) Prayers for Rick and his family. Here's hoping one of the appointments he has in June will have a way to help him. Hang in there Rick. Keep battling. Edited May 29, 2015 by LOVEMESOMEBILLS Link to comment Share on other sites More sharing options...
Mr Info Posted June 15, 2015 Author Share Posted June 15, 2015 (edited) I am sorry to relay this but say your prayers. Rick made it to Johns Hopkins but they did not have anything for him. He is unable to make it to Penn State or Roswell as he experienced difficulty breathing and is now on a ventilator at VCU and his kidneys are failing.... Edited June 15, 2015 by Mr Info Link to comment Share on other sites More sharing options...
mead107 Posted June 15, 2015 Share Posted June 15, 2015 Thanks for the update. Thoughts and prayers go out Link to comment Share on other sites More sharing options...
Mr Info Posted June 15, 2015 Author Share Posted June 15, 2015 (edited) Went to see Rick at VCU Med Ctr today and was unable to see him as he was sedated. However, his wife, Brenda, and his family from Buffalo and elswhere in the US were outside in the Critical Care visiting room. Just before my arrival, Brenda received a call from MD Anderson Cancer Center that they will arrange with VCU for air transport for Rick as long as the ventilator is removed and kindey issues resolved. They (MD Anderson and VCU) believe the ventilator is necessary due to increased fluid in lungs and they have drained it and are using a diuretic to address this. They believe the kidney issues are related to a contrast dye that was used and will be using dialysis to help them recover. They have already started showing signs of recovery. I was expecting a far different scenario than what I encountered but it was great to see. Keep the good thoughts coming. Â Btw - article in the BN on Friday, June 12 about OmniSeq at Roswell. Very interesting and might be benefical for anyone with lung cancer tumor though it may be applicable to other cancers as well. http://www.buffalonews.com/city-region/medical/roswell-park-looks-to-spinoff-company-to-help-revolutionize-cancer-care-20150612 Edited June 15, 2015 by Mr Info Link to comment Share on other sites More sharing options...
Rubes Posted June 16, 2015 Share Posted June 16, 2015 Thanks for keeping us updated. Hope he can turn this around. Link to comment Share on other sites More sharing options...
BillsFanM.D. Posted June 17, 2015 Share Posted June 17, 2015 Still praying for him. Link to comment Share on other sites More sharing options...
plenzmd1 Posted June 19, 2015 Share Posted June 19, 2015 Briefly met some of Ricks family last night. They indicated things are trending positive, but we did not go into any detail. keeping positive thoughts flowing for Rick and his family! Link to comment Share on other sites More sharing options...
Rubes Posted June 20, 2015 Share Posted June 20, 2015 That's good news, thanks. Link to comment Share on other sites More sharing options...
motorguy Posted June 20, 2015 Share Posted June 20, 2015 I will keep this man in prayer as well, man get yourself better by listening to what the Doctors have to say. Â Good luck Sir, all the best. Link to comment Share on other sites More sharing options...
boyst Posted June 21, 2015 Share Posted June 21, 2015 Lets keep hearing that it is getting better! Link to comment Share on other sites More sharing options...
The Poojer Posted June 24, 2015 Share Posted June 24, 2015 WOW, this thread is pinned and yet I am just visiting it. Props to Mr Info & Plenz for representing the TBD crowd, glad the Richmond contingency has been able to visit him, bring him a legend lager, that would lift his spirits. Keeping MadCap in my thoughts. Keep the updates coming! Link to comment Share on other sites More sharing options...
plenzmd1 Posted June 25, 2015 Share Posted June 25, 2015 Emailed with Rick's wife yesterday. Rick is still on the ventilater as his blood pressure and heart rate have been very erratic. Does not appear that MD Anderson is an option at this point. They need some good news at this point...I am not a religious sort but if you are please say a an extra prayer or send positive thoughts for this family. Â Hope to see them this afternoon. Link to comment Share on other sites More sharing options...
Rubes Posted June 26, 2015 Share Posted June 26, 2015 Best wishes...hope he can turn this thing around soon. Link to comment Share on other sites More sharing options...
mead107 Posted June 27, 2015 Share Posted June 27, 2015 Stay strong. Prayers on way Link to comment Share on other sites More sharing options...
DC Tom Posted June 27, 2015 Share Posted June 27, 2015 I'm not a praying man, but let him know he's in my thoughts. And an idiot. Link to comment Share on other sites More sharing options...
Gugny Posted June 27, 2015 Share Posted June 27, 2015 Prayers and positive thoughts headed his way! Link to comment Share on other sites More sharing options...
Mr Info Posted June 28, 2015 Author Share Posted June 28, 2015 Rick's wife Brenda just called me a few minutes ago and Rick just passed. Â Here's to a great guy!!! It was a privilege to know him. Â His wife & their two young boys will appreciate anyone's help more than ever. I will post info on services when I find out. Link to comment Share on other sites More sharing options...
boyst Posted June 28, 2015 Share Posted June 28, 2015 RIP Rick's wife Brenda just called me a few minutes ago and Rick just passed.Here's to a great guy!!! It was a privilege to know him.His wife & their two young boys will appreciate anyone's help more than ever. I will post info on services when I find out. You can change the thread title by going to the original post, looking below it where it says edit and use full editor to change the subject title. I understand if you do not have the energy nor desire to do so. Â I sent a note to mods to change the title. Link to comment Share on other sites More sharing options...
mead107 Posted June 28, 2015 Share Posted June 28, 2015 So sorry for his wife and family. Link to comment Share on other sites More sharing options...
LOVEMESOMEBILLS Posted June 28, 2015 Share Posted June 28, 2015 Sorry to hear the news. Prayers go out to his wife and boys. RIP. Link to comment Share on other sites More sharing options...
Doc Posted June 28, 2015 Share Posted June 28, 2015 RIP. Link to comment Share on other sites More sharing options...
Beerball Posted June 28, 2015 Share Posted June 28, 2015 RIP Link to comment Share on other sites More sharing options...
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