| Author | Message | ||
     Jerry_haughton |
here's the latest news, and a couple of pix, on Matt Ware, via an e-mail this afternoon from Mitch, Matt's dad. thank you to everyone who keeps Matt and his family in your thoughts and prayers. FB ----------------------------- March 6, 2007 Everyone, We have some great news...and some hard realities to share. First the great news: Matt’s most recent MRI results came back stable again! That is to say that there is no new cancer activity, those hot spots are still absent and the one big tumor site we have been watching in the back is stable. This is really incredible and a huge answer to prayer!! Now the hard realities… Matt is in yet another transition physically, and therefore mentally as well as emotionally. The very serious negative side effects are starting to set in from all of the intense treatments. They include significant short-term memory loss, loss of balance, as well as slow mental processing. The most debilitating (and obvious) is diminished use of his left hand and leg/foot. At this point we are not sure why. It could be brain swelling, or some other pressure on the brain. This could also be a result of what they call ‘brain-neglect’. Simply put, the brain calls an emergency secret meeting of all of its lobes and then decides to vote the traumatized portions of the brain “off the island”. It then begins to shun or ignore the areas of the brain that received trauma from the treatments, which in Matt’s case was the right side and some of the middle and back. His brain is systematically “forgetting” to send signals to and is ignoring the right side of his body, starting with the extremities. This creates serious concerns with muscle atrophy… the epitome of “use it or lose it”. He has little or no use of his left hand, and is losing strength in his left leg. Add to that an overall loss of balance. This impacts not only walking, but the ability to stand as well. One tool to (hopefully) slow this down is to go through regular physical therapy and force the muscles to work. In effect you are ‘reprogramming’ the brain and the muscles. In Matt’s situation, the reprogramming doesn’t get ‘saved’ and so the next day you have to start over again. This is a difficult and frustrating measure that is physically and mentally taxing. You mentally fight with the feeling of ‘futility’… “what’s the use” and it is easy to want to give up. Matt is determined, but frustrated. We have to remind him daily to do his exercises, even though he is currently seeing little fruit from his labor. Ken, Matt’s physical therapist is very talented and is great with Matt (a photo of Matt and Ken are attached). However truth be known, this loss of functionality is probably a result of several factors. We are going back on steroids effective this afternoon to help with energy as well as any brain swelling. Matt continues to receive chemo every other Wednesday (a photo of his favorite chemoland nurse, Pat, is attached to this note). His “chemo-hangovers” last about 4 days, and consist of strong stomach pains and headaches. He and Bowser usually stay with us during that time so that he can be closely monitored for blood clots, etc. With the two good MRI’s back-to-back we wondered about tapering back the chemo… or even skipping a treatment to give him a break from the “poison”. The Doctors response was that this treatment is so new and is working so well, they are reluctant to change a thing. It’s the old “if it ain’t broke, don’t fix it” mentality. The doctors finally confessed that they haven’t even developed a ramping down strategy for this treatment yet. But they did agree to change the treatment cycle to see if that will help his energy level. So, we find ourselves in a new situation, the chemo works, but takes its toll with a significant compounding effect. How long can anyone, regardless of how strong willed, stay on this stuff? And, at what cost? The side effects of the treatments are presenting themselves and new significant life issues have emerged. Quality of life is very important and is a big priority… we are now scheduled to meet with the doctors in Detroit in a week or so… stay tuned! Imagine being in the painful process of discovering a “new you”… one that you didn’t ask for, filled with blindness, weakness, forgetfulness, stumbling and tripping, having to depend on others for the little things as well as other limitations. You have a different body, but you didn’t trade “up”. You are a totally different person physically and have to adjust mentally. Complicated math you used to do in your head is not even a consideration now. Playing the sports you love is something you can only watch now. At first glance, you aren’t crazy with what you have become. In fact, most of us would panic and scream out, “Why me???” For the first time in your life you are dependent on others for even the little things that we all take for granted, like buttoning your shirt, putting on a coat, cutting up a meal on your plate or even walking down the front steps of your house. That is tough on a 20-something! What you are, has been redefined for you by cancer, but WHO you are has not. Then there is Matt’s family. We struggle along with him, and in many cases suffer more as we watch and cannot ‘fix’. Sometimes the grief is overwhelming, thankfully, we are not all afflicted at the same time! We even though we are a close family, we all handle this in our own way. And we have all grown Smart money is on Matt coming through this transition. He will be a little more dinged up, but wiser for the experience. He is going to discover God as well as himself, in a new and even more profound way. I cannot imagine, especially at his age, having to let go of all of all of my dreams now the apparently shattered and then develop new ones. Letting go of what you thought was your true purpose in life that you had worked so very hard for and then, through the pain and suffering, discovering yet another more special purpose. But we know our son. And we have a strong faith in God. If anyone can pull through this... ...Matt can. Please keep Matt and his family in your prayers, and know that you remain in ours! Mitch and Family   January 26, 2007 Good morning everyone! It is hard to believe that this is the 3rd anniversary of the beginning of Matt’s cancer journey. And to think how far we have come. If you recall, during those first few dark days we discovered his prognosis was 18 months. And now because of your prayers, here we are 36 months later… How Cool Is That!! We have learned a lot in these past few years, not the least is that you are much stronger in everyway imaginable then you think you are. That is to say, with God’s help, all things are possible. They really are. We also have learned that contrary to popular belief the medical industry is indeed filled with many wonderful professionals who are highly talented and really do care about you. You learn very quickly though, that you have to be your own best advocate. You learn to find out who is in authority and who can remove the obstacles in your way in a timely fashion. After all, we are racing the clock here! You learn how to say to the insurance companies: “I am sorry but that isn’t acceptable”. And you learn to say that over and over and over again (preferably without losing your temper). We learned that you have to form strong alliances with others tapping into their strengths. Or another way to put it… we have had to learn how to lean on others. Yikes… that is one of the most difficult things not only for Matt, but for all of us in this family!! However, without the help from others we couldn’t be as effective. Cancer is bigger then anyone one or two or six of us. We learned that we are blessed to have wonderful friends and family like you who support us. We are especially fortunate that near the center of this network of support is a very cool guy, our minister David Beelan. He has taken Matt under his wing and has helped Matt negotiate some of the spiritual challenges that we couldn’t. Dave is a great team member and he is always available for us to lean on. For that we are so very grateful! As you know, Matt has been through a lot! In the past three years, we have been through two rounds (14 weeks in all) of daily radiation as well as two rounds (one and half years and counting) of chemo. Through all of this, you meet interesting people along the way. We have made many new friends. It is like a brother/sisterhood of sorts. As soon as you walk in, you are part of the brother/sisterhood. Much like men and women who have been to war… regardless of age, cancer survivors and caregivers share a common bond. You see someone in the store, a woman with a scarf on her obviously bald head, you smile and point to your wrist band, you get a smile back and you have made a new friend without saying a word. Cancer impacts people from every walk of life. Without the illness, these folks probably would not give each other a moment’s notice. Now, everything is different. Every once in a while, especially at ‘Chemoland’, we see someone who is a loner. That in and of itself is okay, but occasionally there is someone who is literally shaking with fear. Sadness fills their face. They sit with eyes closed and hands clasped tightly together… just wanting this whole thing to be over with. Many times they are sitting all alone without the comfort of a friend or loved one close by. I often wonder why? Is it that they don’t want anyone to see them this way or is it that they are just alone? People shouldn’t have to suffer alone and certainly not with such sadness and fear. The nurses are great, but they are busy. In the 4 hours that we are there, we usually find the right time to reach out to these people one way or another, and try to bring some happiness into their lives even if it is for just a few minutes! Matt strikes up conversations with strangers easily. Other times, he breaks the ice and sends a non-verbal ‘friendly hello’ (all the while soliciting a smile from some unsuspecting person) by utilizing a well placed ‘honk’ from his new bicycle horn (that he hooks onto his portable chemo pole) then sharing that big smile of his as he makes his way down the hall to the restroom or whatever. He says he is honking at the nurses that dart into his way, however upon further review, I think he is trying to engage more he lets on! Everyday, bad things happen to good people. In this past year, several of our close friends have been diagnosed with high-grade cancer or MS or some other life altering disease. Several others have lost their jobs or have suffered major financial setbacks. There is hope for us all! One of the most important things we have learned in these past 36 months is what matters most is how you handle it. It is about keeping perspective. In the overall scheme of things, it is today that matters most. It is determining what I can control and what I have to let God handle and let go of (that’s the hard part). There are things greater then yourself, and there is a God that loves us and is willing to come to our rescue when asked. We have learned that each day really is full of ‘good things’…. even the seemingly bad days! But many often go unseen or unnoticed. We are learning how to appreciate each day for what it is, and to try our best to thoroughly enjoy the day. Sometimes, it’s just moments at a time. We are learning to slow down, it is fascinating to see all that you would have overlooked in the past. As for Matt, things are currently going along fairly well. Chemo is every other Wednesday, and then a 4 day chemo-hangover. His sense of humor is still very much intact and he tries to find every opportunity he can to utilize it! His analytical mind still works great and he will surprise us from time to time with technical info we thought was long forgotten. Attached are some photos of Matt, one taken three years ago when he had surgery, one taken a year ago at Relay for Life in Kentwood, and then one taken this weekend at our 3 year celebration dinner at Vitalies. There are many more at www.flickr.com/photos/team_matt_ware for you to enjoy. Matt’s next MRI will be taken in late February. We will keep you posted! Thank you for sharing this journey with us. You are a very important part of our team. Until then, inspite of the stuff, go out enjoy the ‘good-things’ of the day! Mitch and family (Message edited by jerry_haughton on May 05, 2007) | ||
| Jerry_haughton |
 Matt Ware and Alex Prior, September 2006, at Matt's house in Grand Rapids, Michigan | ||
| Prior |
Ferris, Thanks for posting this. I somehow missed this email from Mitch. Matt and family, You are in my prayers. Tumor stability is great news, but dealing with the after affects is going to be a challenge. Keep up the fight! Hope to be up and visit again soon. Alex | ||
| Nevrenuf |
this can really be a time of turmoil for you and your family matt. the only thing you can do is keep up the fight. you can ask for gods help but it is totally up to you whether you want to beat it or not. you and your family will also be in my prayers. i have another friends wife going through it her self and she is doing a pretty good job so far fighting it. | ||
| Daves |
Keep kicking it's ass Matt! | ||
| Djkaplan |
Fight the good fight, Matt. | ||
| Bcordb3 |
Matt, We're are with you buddy. | ||
| Stingaroo |
Ferris, thanks for the update. Matt is the definition of the warriors code, your in my prayers buddy. Keep the Faith. | ||
| Berry |
Jerry, Thanks for the news on Matt. Matt, keep up the fight, you deserve the best! Jim A |
