RIP board member TheMadCap

[ajzepp]

Hang in there, MadCap...you're in my thoughts and prayers, brother.

[plenzmd1]

Hi all,

 

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.

 

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.

[Mr Info]

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.

[plenzmd1]

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

[BuffaloBill]

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.

[AiO]

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!

[mead107]

Thanks for the update. Thoughts and prayers go out to you my friend.

[Bad Things]

Sending you positive thoughts and prayers from New Zealand.

God bless you, buddy.

[Mr Info]

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.

 

[Rubes]

Thanks for the update. He's lucky to have such a great support group. We wish him our best.

[Beerball]

Thanks for the update. He's lucky to have such a great support group.

Yes, he is.

[rockpile]

Thanks for the updates, and continued prayers for Rick and his family.

 

It is great you are doing this and I am sure he really appreciates visitors to talk about something besides his illness.

 

Kudos to you all!

[Mr Info]

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.

 

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.

 

[Rubes]

Thanks for the update.

[Keukasmallies]

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.

[BillsFanM.D.]

 

Rick is still due to leave VCU on May 28.

 

 

Please let us know how things go today. Still praying for him.

[shrader]

I've always pictured him as a gorn.

 

Keep up the hard work, Rick.

[TSNBDSC]

Stayin

[LOVEMESOMEBILLS]

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

[Mr Info]

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