A Very Big Thank You.....

I would like to take this opportunity to thank everyone who attended the fundraiser at applebees last night in my honor as well as Maureen Bielecki for hosting a fundraiser at her home for me. Donna and I are so humbled by the outpouring of generosity and kindness from all of our neighbors, friends and family. I want to also thank Danielle Taroff for cochairing the Applebees fundraiser along with my wonderful daughter Amanda.
Donna came home today to find a card in the mail from the wonderful girls in Dr. Pecoraro's office ( by the way, if you need a great periodontist in jersey, Dr. Melissa is the one to see). They all know that she is going through a very difficult time right now. Her mom is staying with us recovering from a bought with pneumonia. Donna has been caring for her full time as well as dealing with my illness and holding down a job. The girls chipped in to have a cleaning lady come to our home several times to help out. It means so much to her as well as to myself. Again, I can't say thank you enough to everyone.

A Father's Day to remember....

i am usually not an adventurous kind of guy. Donna has more than enough adventure to make up for both of us. She enjoys camping and any or most outdoor activities. My idea of camping is a room at the Marriott!
To commemorate Father's day, I decided to do something a little crazy ( at least by my standards) and took the family ATV riding in the mud!! I have to say, it was one of the most memorable Father's day we have ever had. I will never forget their laughter and looking at my wife and kids covered in mud from head to toe. I am certain that they will never forget it either!

Happy Father's Day!

I would like to wish all you dad's out there a very Happy Father's Day! take the time to really enjoy your children on this very special day. Donna is preparing for family to come over and as always, is cooking a fabulous dinner.
I would like to thank everyone on my Soccer team for a tremendous job this past season and for attending the end of season picnic. Thank you for your gifts... I am truly humbled by everyones generosity. A very special thank you to my team mom, Janice for her help throughout the season. I am looking forward to coaching in the fall and hope that all of my kids will be returning.
I saw my Rheumatologists back here in Jersey on Wednesday. We are going to move forth with plans to be evaluated by a lung transplant team in mid July. Donna has been busy faxing info over to the Dr.'s at Beth Israel. We recieved a 40 page report from Northwestern on all of the testing that had been done there. My skin is worsening and the Tracleer that i have been taking for my heart has now been increased to double the dose. I will be increasing my visits to Robert Wood Johnson Hospital as well, from 6 months to every 3 months.

I will continue the fight!

Through the advice of my family and friends, i have decided to keep this blog and continue to post. It may not be daily postings, but I will try to keep this going. I have been feeling this past week that in some way I have let everyone down, particularly my Scleroderma brothers and sisters who are fighting this fight with me. This stem cell transplant was not only for myself but for all of the other men, women, and children (yes, even children are afflicted with this disease)who suffer and struggle every day of their lives. I was hoping to bring us one step closer to a cure. If I could have been a subject for this clinical trial to help science find that cure I would have. I will continue to fight this disease with dignity and Donna and I will continue to look for alternative methods. I am optimistic that someday there will be a cure. If any of my Sclero brothers and sisters out there are reading this, please consider taking that chance to help find a cure not only for yourself but for others who suffer like us. Dr. Richard Burt should be commeneded for his work in stem cell transplant therapy. He is a compassionate human being who believes in his work and he was heart broken to give me the news that this would not be a possibility for me. If anyone wants more information on his work and Northwestern Memorials program, please email me. We have sent people to the moon, I know we can find a cure for this! Remember that June is National Scleroderma Awareness month. Stay strong to live long!

A Disappointing Day...

I received a phone call from Dr. Burt yesterday with very disappointing news. It seems that there is new damage to my heart that wasn't there at my initial visit back in March. The right ventricle of my heart is enlarged from the disease which is making it work harder. The transplant would stress my heart and ultimately put me into heart failure. I stressed to Dr. Burt that I would be willing to sign all waivers not holding anyone accountable, but he explained that ethically he could not proceed with the transplant and told Donna and I that if I were to go forth with the procedure I would definitely not survive it. I think it is extremely important at this time to consider my children and the precious time that I do have remaining.
Donna and I want to thank all of our friends, family members and neighbors for all of your support both emotionally and financially by donating to the transplant fund in my honor. The money that has been collected will be used to offset the expenses incurred while traveling to Chicago for these evaluations as well as all medications that have not been fully covered by my insurance.
What's next you ask? I am going to follow up with my rheumatology team here in New Jersey and possibly be evaluated for a lung transplant. I am not certain that i will be a candidate for this either but I am not going to give up. Winners never quit and quitters never win. I will be following up with future updates as soon as i see my New jersey Doctors. BE STRONG TO LIVE LONG!

Home sweet Home.....

Hello All, well we are finally back home and enjoying this beautiful weekend. What a change from 48degree Chicago. The kids managed to do very well without us... Mikey even managed to do his own wash a few times times this week! I just can't thank our neighbors and friends enough for all of the phone calls and visits to check on the kids. It meant a lot to them and even more to Donna and myself. Mikey has a soccer game this afternoon. I am looking forward to coaching my team again. They are a great group of kids.
Hopefully we will hear some news this week from the insurance company as well as from the transplant team.. I am hoping for only positive news. Please say an extra prayer or two or three this week....

Some good news and not so good news.....

Hi All, well let's start with the not so good news first.... We met with the cardiology team today and it seems that there is an abnormality on my cardiac MRI. The concern here is whether or not my heart will be strong enough for transplant. Evidently,this was not an issue three months ago, but with my disease progressing there is a concern now. The team is going to meet with Dr. Burt and evaluate the situation. I told them that I am fully aware of the risk involved and i am ready and willing to take it....if you know me well enough, you all know that I am a risk taker and at this point this is my only chance... I am going for it!
The good news is... All tests are finished and we are leaving tomorrow morning! I miss my kids and I can't wait to get home, and yes, I even miss Mylo, our beagle.. I would personally like to thank everyone for your posts to this blog, your emails and the many phone calls. Everyone has been so supportive and it means a great deal to both Donna and myself... see you all back in Jersey!

National Foundation for Transplants

Mike Adams - Flemington, NJ
	Donate Today Donate with		Transplant Type - Bone Marrow Mike, a husband and father of two, first suspected Lyme disease was the cause of swelling and pain in his hand until further testing showed he suffers from Systemic Scleroderma, a rare autoimmune disease causing the tissues of various organs to become very hard and eventually stop functioning. Doctors have told Mike a bone marrow transplant is his only hope for a second chance at life. Mike was once very active, spending time with his two children, jogging five miles per day and playing softball as often as possible. However, his condition has forced him to stop the activities he once loved. An active coach in local Readington Township athletics, Mike has coached his children's athletic teams for 15 years. He is thankful that he has still been able to coach and hopes he remains healthy enough to continue helping. Mike looks forward to playing baseball with his son once again and walking his daughter down the aisle someday, and he hopes a lifesaving bone marrow transplant will allow him to do those things. A bone marrow transplant costs approximately $300,000. And that's only the beginning. Mike faces significant medical expenses related to his transplant. Because Mike's insurance will not cover a large portion of the transplant costs, his hospital has estimated that Mike will be responsible for approximately $170,000 out of pocket. You can help! To make a donation to NFT in Mike's honor, click the link below his photo. If you'd prefer to send your gift by mail, please send it to the NFT New Jersey Bone Marrow Fund, 5350 Poplar Avenue, Suite 430, Memphis, TN 38119. Be sure to write "in honor of Mike Adams" in the memo line. Thank you for your generosity! Patient Health Institute: Northwestern Memorial Hospital

Day 3 down and one more to go!!

Hello all, well another day down of testing... yesterday I had an adenosine stress test followed by a visit to the vein clinic. We received a tour of the area where they will be harvesting my stem cells and a brief overview of the machine that will actually be extracting the cells from me.
Today I had a cardiac cathetarization. This is the third one i have had done, so It was almost routine for me. The Cardiologist said my pressures looked good and that he was going to give the thumbs up for transplant.
Donna and I took a short tour of the Museum of Science and Industry this afternoon. This has been the only time we have had an opportunity to see a little bit of Chicago. The highlight of the afternoon was actually when we were waiting for a taxi back to the hotel... an ice cream vendor and a cab driver got into a heated argument about the prices being charged for an ice cream cone. It was something right out of Comedy Central!! At one point the ice cream vendor threatened to throw the cone at the cabbie... only in Chicago!! It has been several hours later and Donna and I still can't stop laughing about it. Tomorrow is the last day of testing. I have an MRI in the morning and a consult with the cardiac team in the afternoon. Piece of cake!!

tests, tests, and more tests....

Hello all, well the day has finally come to an end and what a busy day it was...most of the morning tests were fairly easy. I had 20 vials of blood drawn and felt dizzy afterwards, I was in need of a glass of juice or something sugary... just when i thought the worst was over, the afternoon rolled around and i had an MRI. Now I have had an MRI before, but this particular one looked like a medieval torture device! They literally strapped my arms down to a table and put me in this tube. You know you are in trouble when they hand you a panic button and tell you to press when needed. I treated it like i was a contestant on one of those reality t.v. shows... How long can Mike Adams last in the tube without pressing the panic button?? It was hell. I had to stay in there an hour! My prize....Donna handed me a snicker bar. I'll take it! haha. My visit at the dental clinic didn't go as well as I hoped either. Apparently I have a tooth with an old root canal that is failing, so when i get home i have to visit a specialist to have my root canal redone. They have to do this because once i get the transplant, my immune system will be nonexistent for a while and if this tooth should decide to suprise me with an infection it could actually be life threatening Lucky me, a root canal to look forward to upon my return home! . Hopefully all will go well tomorrow.