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     Prior |
It's been a bit since I've posted one of these, we've been waiting to see what effect chemo is having on Matt's tumors... The latest from Mitch, Matt's dad: Everyone, As most of you know, Matt's condition has worsened. The neurologist ordered an urgent MRI for last night. The MRI was read locally and we did not get the news we wanted. It appears that the tumor has grown significantly (not sure what the medical definition is here). Hence one might deduce that the new functional issues we are facing are a direct result of the growing tumor(s). We are overnighting the MRI to Henry Ford for further review. Stay tuned... we will let you know what they discern and recommend. In the meantime, Matt is taking some vacation days and is at our house. Feel free to give him a call or drop him a line. Thanks! Mitch The tumor that has grown significantly is at the reoccurence site of his original tumor, Ford has identified an additional, but much much smaller tumor at the back of his brain. Matt and I had planned a visit in Grand Rapids last weekend, but based on his current sleep patterns, chemo regiment and all that is going on, we decided to put it back until his current condition is sorted out a bit. Tough call to make, but for the best. I did end up going to Michigan to participate in an alumni golf outing with my fraternity though, and Matt called in the middle and about 15 of us had the chance to chat with him for a bit. Definitely a small thing that helped to cheer him up. I spoke with Matt for a while on Thursday, they were headed to the Ford Clinic to determine the next course of action, be it more/different chemo, invasive etc. They should have this sorted out soon, and I'll have another update then. If any of you have a message you'd like to send Matt and/or his family, I'd invite you to send it to me via PM, I'll print them out and get them to Matt, it's been difficult for all of them to keep up with email etc. as of now. I'm going to start posting these updates back in the RANE thread of the Tale Section, so they don't fall into the archives as quickly. Thanks to all of the Badwebbers who have been with me, Matt and is family and friends through this whole ordeal, it's meant a lot to us all. Please keep Matt, his family and cancer patients everywhere in your prayers, tough times are ahead. Fight hard, my friend. Alex ---------- [EDIT - FB] from Mitch: June 13, 2006 Everyone, Here is the latest scoop... things continue to be rough for Matt, the chemo he was on called 'Temadar' didn't work. We went to Henry Ford Hospital yesterday to meet with the experts, they suggest more radiation. That stuff is nasty on the brain. The side effects can cause blindness, deafness, loss of use in limbs, and such. In fact his stroke was directly tied to the last round of radiation. We are really having to make a tough decision. The radiation would buy us some time, but might very well sacrifice the quality life we are shooting for. Matt has gotten to the point where the left side of his body was failing fast, i.e. he can hardly walk, he cannot type or use his left hand, his speech is sometimes slurred, he cannot tie his shoes, button his shirt, or zip up his pants. His sense of balance is way off and he falls if he isn't supervised. Even his thought process is dulled somewhat. He suffers from a condition where the left side isn't recognized by the brain anymore, the doctors say it is called simply 'neglect'. As a result, he holds his head and looks to the right. In another observation yesterday on our way home, he laid his left arm in his food at the table and didn't know it until we pointed it out. All of this is a result of the tumors pushing on the right side of his brain. The doctors say that the tumors are probably low grade, however they are big and causing lots of pressure. They are not really a solid mass yet, so they cannot be effectively removed with surgery (unfortunately). So chemo and radiation are our best weapons at this point. The Radiologist at HFH wants to basically repeat the same treatment that Matt had 2 years ago... everyday for 6 1/2 weeks. And, he wants it done down there. That would mean that we would have to move to Detroit with Matt for the duration of the 6 1/2 weeks. We are going to consult with our local Radiologist to see if the radiation can be done here in GR. The HFH Radiologist said that he would consult with our local guy but would not layout how it should be done for him. We are meeting with our local oncologist on Friday to get set up on a new chemo where he will have to go to 'chemo-land' and have an IV drip administered several times a week. We will keep you updated!! Thanks for your prayers and kind thoughts! The war isn't over yet!! Please join your faith with ours as we make a mid-course correction and go after this these tumors! Mitch P.S. At least this time when we shave our heads, it will be summer :-) ------------ [EDIT - FB} from Mitch: June 22, 2006 Everyone, Here is the latest on Matt's medical condition. We met with the local Radiologist today and he is setting up treatment for Matt here in GR. However, he suggests that we may have to have some of the radiation treatments in Detroit at Henry Ford Hospital. The doctors at HFH and our Radiologist here in GR are working together on this new plan of treatment. Drawing up the radiation plan for treatment to the brain is a very complicated endeavor and must be exceptionally precise. An error in the calculations, even a very very small one, could be catastrophic. These guys are very good at what they do. We asked them if we could get started next week, and the doctor replied perhaps. He wants to study more films and cat scans of Matt's head before he makes his final radiation treatment (targeting, pathway and dosage) plans. We have a tremendous amount of confidence in this team of doctors. Once we begin the new round of radiation, we will resume the chemo. Stay tuned for more info, as we will keep you apprised. As Matt mentioned in his note last week, a very good time was had by all at the Relay For Life! You will find a photo or two attached to this note. We are in the process of trying to figure out how to post a group of photos on the internet so that you can go there and browse 'til your hearts content! In fact if you attended the event, we probably captured you on film! We have some excellent photos of Matt from Saturday with his grass skirt and coconut bra on. Definitely worth the time to check out! Also, here is a link to an article from the Thursday June 22, 2006 Grand Rapids Press Community section about the Kentwood Relay For Life in which Matt is interviewed. www.mlive.com/search/index.ssf?/base/news-30/1150989210191910.xml?grpres s?NEG&coll=6 This link takes you to the mlive website which may ask you your zip code and the year you were born... an informal way for them to see who their demographic user is... so don't get freaked out if that pops up! It is perfectly harmless. Once you click the year you were born, you will go directly to the article. Hopefully the photo that appeared with article in the newspaper will be there too! It is a great photo of Matt making the survivors lap with a new friend who had several forms of cancer. We cannot thank our Team Matt Ware Captain Lisa Champlin of the Burch Fabrics Group, or her helpers Cyndy Lange of Monroe Inc, and Marty Faasse of Alticor enough. They worked very long and hard to put this together. Also, Tracy Williams, Lori VanHarlem, Missy Boersma, Cy Jorden, Scotty Ware, Jenni Townsend and Ken Tarbell turned in countless hours of work planning, coordinating and managing details like food, sign-ins, set-up and tear-down. Mike Modreski and Beth Kaminski both loaned us their tents so that we could have the best set-up in Kentwood! Ditto General RV for the RV they donated for the weekend for Matt to have a quite place to rest!! Wow, how cool was that? There are many others as well (and you know who you are  who have put in time and money to make this all come together. And, we have collected over $25,000 for brain cancer research. That is incredible. This event was a tremendous success because of your collective efforts. As we get our new battle plan defined, we will let you know! In the meantime, thanks so much for your prayers, and support. It is a little easier going into this next battle knowing that you have our backs! Mitch and family ---------- [EDIT - FB] from Mitch: July 2, 2006 Everyone, Matt is feeling great and in fact, he is doing better then he has done in a very long time. The Doctor (radiologist) Friday told us that is because the inflammation and swelling from the tumor has been temporarily eliminated or at least reduced by the steroids. Matt and I worked on his house some Saturday and he enjoyed being 'home' for the weekend living in his own castle (so did Bowser!). He is also eating everything that isn't nailed down! He knows the treatments that lay ahead are not only going to take his hair, but also his appetite. So he is bulking up. Trouble is, we are bulking up with him! Too many late night trips to Cone City! The doctor also gave us some news we were not expecting. He shared with us that he will not be able to treat Matt locally. He went into great lengths to explain and demonstrate utilizing MRI and CT scan films why Matt's condition is more difficult then we were lead to believe. He has spoken with the team in Detroit Henry Ford and they will see us there for the treatments. This isn't good. After the explanation of Matt's condition, with our hearts crushed... we asked if the treatments are even worth doing. He paused and then said guardedly... maybe. After thinking out loud for what seemed forever, he encouraged us to go have the treatments and see what happens. The side effects can be very debilitating, however without them, Matt only has 4 to 8 months. And those last 4 months would be very difficult with similar debiltation as from the treatment. With them and assuming they work, he could have up to 12 and maybe as many as 24. The side-effect that Matt dreads most is going blind. And, the way the radiation would work this time, it is highly possible that the beams will hit part of the optic nerve network, taking out small pieces of his field of vision, creating black holes in what little vision he has. We asked about just taking our chances with chemo, he said that wouldn't work this time. Matt told us that he has peace in his heart that he should go ahead and have the treatments. This will probably mean that we will have to get an apartment in Detroit and stay there for daily treatments for 6 weeks. Then come home for the follow-up chemo treatments. So, what does this all mean? Quite simply... it is fight or die time. Matt says let's fight! That brought to mind the old adage that with Gods help and blessing, ordinary people can accomplish extraordinary things getting miraculous results when they have too. We have seen him go down hill quickly, and we know what lays ahead if the treatments aren't successful. However, in spite of the rough patch that lays up ahead, we are going to push on with everything we have to beat this thing. So please join your faith and strength with ours, and lets go to war with this thing. When we meet with the team in Detroit, we will let you know exactly when the treatments will start etc. Again, thanks for your prayers and support! Mitch and family ------------- [EDIT - FB] from Mitch: July 21, 2006 Everyone, From time to tine people ask about our family. Matt has three younger brothers. And it has been an interesting few weeks around the Ware household. Bowser (the lionhearted Pomeranian wonder dog of Matt's who is only 5 pounds but thinks he is 105 pounds) has moved back into the household where he aspires to unseat Lori's boss-cat Daisy... Scotty is working as a landscaper this summer and getting ready to go play college football, Tim is busy working two jobs to earn additional money for school and a different car, while Dan is busy working in his career designing and building orthopedic devices for children... and we have begun our cancer treatments in Detroit! After the sober conversation we had with our local doctors a few weeks ago, we have put on the full armor and have begun bringing the fight to the cancer with a unique version of 'shock and awe' via a special (new) form of radiation called IMRT... combined with a chemotherapy ... all at the Henry Ford Hospital Brain Cancer Center in Detroit. So far so good as Matt is tolerating it all fairly well. Mitch drives Matt to Detroit on Mondays and stays with him until Lori arrives late Tuesday, who then is with him Wednesday, and Thursday and then they drive the three hours back to Grand Rapids Friday after his treatments. Matt is spending some of his free time seeing some sights... while he has the energy to do so (a few weeks from now the radiation and chemo will probably cause him to sack out about 3pm each day for several hours... and seeing sights will be a very low priority). He has been to the Detroit zoo... checked out all of the snakes and such (return trip needed for sure) and spent an interesting time one evening trying to find a particular spot in downtown Royal Oak... but without much success! A return trip will also be planned for that one as well. Baseball is Matt's first love in sports. We are trying to get to a Tiger game, but the Tigers are surprising us all and winning like crazy!! Who among us would have thought that the team that was only one game away from setting the all time worst record in the entire history of baseball only two years ago, would not only be in first place in late July of this year, but also hold the best record in all of baseball?? All of that success makes those tickets next to impossible to get. But that is okay, Matt and Mitch enjoy watching the games on TV while cheering the guys on from the comfy confines of home (or wherever). AND... these Tigers are just another reminder that MIRACLES DO HAPPEN!! Another little miracle is that the Weston Hotel in Southfield has made accommodations available to us through the American Cancer Society for at least the first two weeks. That is a $2000 value... for free! It is only 10 minutes down the Lodge to the hospital, so it is very convenient! The ACS is working to get them to commit to another 4 weeks to cover the entire session of treatments. They tell us that they are fairly certain that management at the Weston will agree to the deal. We are so very blessed... Lisa Champlin, a.k.a. as the Relay For Life Captain of Team Matt Ware, received a very nice letter today from Matt's fraternity at Kettering University. Enclosed with the letter was a check for $1000. The guys raised all of this money in honor of Matt by holding the first annual 'Pike Spike for A Cure' all-campus volleyball tournament. The guys did a great job raising some serious cash. That brings our total raised for Team Matt Ware brain cancer research to over $26,450! How cool is that?? We will make a difference this year in research thanks to many of you! We have finally posted the photos from the Relay For Life at a very cool free website for your review and enjoyment. This is our first (and very humble) attempt at such a cyber type of undertaking. If you were a part of Team Matt Ware at the 'Relay' in Kentwood, chances are we have captured you on film with acception to a few very illusive and camera shy people like my good friend Cy... who was there all night long holding down the fort along with Scotty and a half dozen or so high schoolers. As the kids would say, "Cy, you rock man!"). Anyway, you will see lots of photos... most with tags on them describing the action or simply denoting which teammate is in the photo. For a fun photo tour of the event, resist the temptation to scroll down through the big photos when you first arrive at the site and instead click on the newspaper article icon on the upper right part of the screen titled Relay For Life. Then for an added treat, click on the slideshow icon in the upper right part of the screen and see how many people you know that were there as part of Team Matt Ware! The slide show runs about 4 minutes or so... you can pause, zoom in, zoom out etc. as you go. Also, click on the newspaper article photo and read the great article written by a very fine journalist for the Grand Rapids Press Julie Makarewicz. Okay time to go to ... www.flickr.com/photos/team_matt_ware Many thanks to several people who captured all of these wonderful memories for us; John and Pam Burch, Julie Makarewicz and Mark and Lori VanHarmlin. There are other shutterbugs who contributed but wish to remain strictly behind the camera and anonymous. And as always, the Ware family found time to snap a few as well! Make a mental note that we will be adding new photos of Matt and friends to this site as we continue on this journey. We will keep you updated as we add new photos. I realize this sounds like a broken record, however we are so blessed with great friends and family. We are constantly being asked how can I help? The greatest gift anyone can give another human being is prayer. We covet and ask for your prayers. We all are so very grateful for them. What greater gift is there, then making petition with the Creator of the universe on Matt's behalf? Wow, what a humbling thought. Matt also appreciates the phone calls (let me know if you need the number), and emails from his friends. He was incredibly touched by all of the love and support as evidenced in the Relay For Life. Matt is still talking about it. That weekend not only brought a lot of joy to him but to all who participated. And finally, even though we are in an all out war for our life, we are not letting this disease steal any of our joy! There is joy all around and we plan on enjoying as much of it as physically possible! It is our hope that you can appreciate the many little joys in your life. Share them with someone close to you in your life today ! Thanks again for being on our team, Mitch and family (Message edited by jerry_haughton on May 05, 2007) | ||
| Jerry_haughton |
hang in there Matt. you're in out thoughts and prayers. fight hard! FB&D |
