Matthew Alan Styer, age 30, passed away peacefully with his wife by his side at the Hospital of the University of Pennsylvania in Philadelphia on December 19, 2011. He died after living courageously with leukemia for a year and a half. Matt was born on September 22, 1981 in Sellersville, PA to parents Alan and Grace Styer and grandparents Kermit and Edna Styer and Ralph and Doris Witmer. He grew up in Telford, PA and Greenford, Ohio. He was very active as a boy and known in high school for his skills in both soccer and football. He grew up to be an amazing cook, avid bicyclist, and creative designer and photographer. He loved to travel and go on adventures. His favorite thing to do was make meals to share with friends.
Matt attended Eastern Mennonite University in Harrisonburg, Virginia, graduating in 2005 with a degree in Communications. He then worked for EMU as a graphic designer where he left his mark by redesigning the alumni magazine. At EMU he met many amazing friends including his future wife, Lindsay Martin. He moved to Philadelphia in 2008 to be near Lindsay and start a masters program in digital design at Philadelphia University.
Matt and Lindsay were recently married on September 24, 2011 at his grandparents’ farm in Salem, Ohio. It was a beautiful day where friends and family shared in celebrating Matt and Lindsay’s deep love, a day where Matt’s bold and creative personality could be seen in every detail.
Matt is survived by his wife Lindsay Martin Styer, his parents Alan Styer and Grace Witmer Styer, his brother Jon and sister Amanda, his grandparents Ralph and Doris Witmer, 24 aunts and uncles, and 31 cousins.
A Celebration of Life service will be held at 11 am on Friday, Dec. 23, 2011 at Old North Church, 7105 Herbert Rd, Canfield Ohio. A private graveside service will follow. The family will hold calling hours from 5-8 pm on Thursday Dec. 22 at Old North Church. Arrangements are being made by Seederly-Mong & Beck Funeral Home in Columbiana, Ohio. Donations in Matt’s memory can be made to North End Greenway in Harrisonburg, VA.
Written by his loving wife Lindsay Martin Styer
Many people ask me, “What can we do for Matt, Lindsay and family?” Today an idea came to me of something everyone can send to Matt and Lindsay. A merry heart is good medicine, Proverbs 17:22. We often say, laughter is good medicine… so lets send Matt and Lindsay some good humor medicine. We all enjoy a good laugh. So if you have a holiday joke, funny video or humorous story post it. Now if the joke you want to send to Matt is well lets say not for all of us you can email him direct at …Matt.firstname.lastname@example.org. You can post jokes here or post them on Matt’s facebook page. You can also mail a funny card or poster to Matt Styer 4738 Osage Ave. Philadelphia 19143.
Yesterday the doctors told Matt and Lindsay that they feel like the Tcell therapy is not working effectively and that the Tcells may be causing damage to his heart. His heart is only working at about 60 percent function, and they saw leukemia cells in is blood work yesterday. A positive is that his fever has stayed under 100.5 for the last two days. That is really all I know. They are going to re-assess options, which I have no idea what they might be. They are going to wait another three days.. then maybe give him steroids and some other treatment to help his heart – but if they do that it will most likely make any Tcells that are working ineffective.
Thanks again for all your prayers and love for Matt and our family. It is hard to know what to say… but we are going to keep fighting this nasty illness with Matt with everything that we can… This verse has been on my mind today: “some trust in chariots and some in horses, but I will remember the name of the Lord our God.” I am asking for healing for Matt these next three days. Grandma Witmer called around and gathered about 15 of us on Wednesday night to pray at our house. Some specific things we would like your continued prayers for are, of course Matt’s restored health, that Matt can get out of the hospital and be home for Christmas and that God’s love would cast out fear.
I am so thankful for family and friends and love,
A little over a week ago, on Nov. 15, Matt received an infusion of special T-cells as part of the new treatment Grace described in the last blog post. It was supposed to be the first infusion of three, only 10% of the cells they had collected from Jon and genetically altered to attack cancer cells. The infusion went as planned around 1 pm and we were all very excited that this new treatment was actually happening! Then around 10 pm Matt’s temperature was 101. A little concerning but not unexpected to have a slight fever due to the new cells. Unfortunately his temperature just kept going up that night, as high as 105. Nothing seemed to bring it down very far and it stayed in the 102-104 range for several days.
Needless to say it was scary and Matt was in a lot of pain. The doctors guessed it was related to the T-cell infusion but treated it like a severe infection just in case (they now know it was not an infection). The study doctors decided not to give him the next 2 doses of T-cells because of the fevers. By Thursday Matt’s pain was mostly under control but the fevers continued. The fevers also increased his heart rate and lowered his blood pressure. He was put on fluids, antibiotics, and closely monitored.
The hope throughout this time was that the T-cells were doing the job they were designed for, and the fevers were just a sign of the struggle going on inside his body as the T-cells started killed leukemia cells. But there is really no way to know that at this point. None of the blood tests so far have shown any indication of T-cells in his blood. Dr. Porter, the head study doctor, explained that this news is not good or bad, that he wouldn’t have expected to see any results yet as it is too early.
Matt’s fever came down quite a bit over the weekend, in the 100-102 range, and then on Sunday it was finally below 100. On Monday it was even normal and we hoped that the feverish spell was over and Matt could be out of the hospital by Thanksgiving. Unfortunately Tuesday night he spiked a fever of 104 again. Today so far he is ranging from 98 to 100.
It’s hard to know what all this means. We are realizing that this experimental treatment is just that, a new science that is very untested so far, that these doctors do not really understand exactly how it all works yet. Dr. Porter explained that they don’t really know the “right” dose of T-cells; they gave Matt 10% of what they collected, but even that small percentage was 50 million T-cells, and it might have been too big a dose since it caused such a reaction. Although they didn’t give Matt all the cells he was originally scheduled to get, they feel that the dose he got was sufficient to be successful and they might not need to give him any more.
Right now we are waiting. Waiting for Matt to stop having fevers, and waiting for real results that will tell us whether this treatment is working or not. Matt is waiting to go home. He has been in the hospital over 3 weeks now. He had a goal to be home by Thanksgiving. Today we know that is not possible. For those of you praying for us, please pray that we will have patience during these times of waiting. I am struggling to have patience, as I want Matt to feel better; and Matt is struggling to have patience, as he just wants to go home.
Grace and Alan and Jon and Amanda are on their way here. We had hoped to cook some delicious food together and relax at home; instead we will be crowded into Matt’s hospital room. But we will be together, and for that we are very grateful.
I am sitting here on Thursday with Matt and Alan. Lindsay is at work. Matt was admitted to the hospital on Tuesday. His white count was way too high (around 130). This caused Matt to feel like he has a very bad case of the flu. Lindsay described the doctor visit on Tuesday as “intense” as they explained the risks of such a high white count. Of course we never want to hear that leukemia cells are active again, but this was particularly bad as his white cells were doubling every day meaning the leukemia was very aggressive. They treated it with several types of chemo over the past few days. Today the doctor told us Matt is back on track; his white cell count is coming down and they believe this may have been triggered by an infection that they have identified. (As of Friday, his white count is all the way down to 3.4, so he has responded well to the chemo.)
Matt has been doing really well the last two months, so this was unexpected. Matt is scheduled to start a new treatment on Monday. He is going to be the first patient in a new trial in treating leukemia with modified T cells or gene therapy. You can read an article about this study in the New York Times http://www.nytimes.com/2011/09/13/health/13gene.html?pagewanted=all. This method has been tried three times on men with CLL, Matt will be the first with ALL.
The coordinators for the trial came by and talked with me today. I think I asked them questions for at least a half hour straight! They graciously answered every one. Matt is on track to start the chemo phase on Monday and then the cells will be introduced to him Tuesday, Wednesday and Thursday the next week (Nov. 15-17). After that they will closely monitor him for two years and follow him for 15. The doctor told me today that they are planning on Matt being one of their success stories. Matt is already my success story.
It is impossible to even describe my feelings as a mother over the past year and a half, since Matt has been diagnosed. They run the whole range – some days I am just plain scared and sad, then ask why; but the sweet depth of getting to know Matt and Lindsay and how they walk together in this very hard journey is incredibly sweet. It takes such a strong person to endure what Matt is going through. We all have resolve, and enjoy the good moments, and plan for the future. Every day I pray the Lords prayer as I wake up and ponder on the part “may your will be done on earth, as it is in heaven.” My goal for our family is to be able to understand that will and to walk in it here on earth. Every day, one day at a time.
These are some exciting days for medical science and medical breakthroughs. We may be experiencing some of them here. So I ask for your prayers for Matt’s healing along with the brilliant minds in the research and the compassionate care of the doctors and nurses. We pray for each of them as they all work together, doing this business of healing.
After very frustrating setbacks in August and September, Matt was able to get out of the hospital about a week before his birthday (30!) and our wedding. Matt and I had a fantastic wedding one week ago – the weather actually cooperated and the whole experience was amazing, with everything coming together in a way we could only have hoped for. Much of that was due to the hard work of our friends and family. It was an outpouring of friends and fellowship and we felt so blessed to have such support.
Matt felt really good for the wedding, considering the recent infections and hospital stays, although his vision was severely limited due to retinal bleeding from low platelet levels. (The vision problem started about 3 1/2 weeks ago and there is not much the doctors can do but wait for his body to absorb the blood; they are keeping his platelet levels higher to prevent any further bleeding.) He was able to eat and drink and be on his feet most of the day, which we are very grateful for.
The doctors allowed Matt to leave town for a few days before and after the wedding, so we were able to go early and prepare for the wedding as well as take a little honeymoon afterward. We rented a cabin in Southern Ohio and enjoyed the chance to relax together and absorb the whole experience.
Now, we are back in the hospital. Since Matt responded so well to the last round of chemo, they wanted to do another round while he is still feeling pretty good. He was admitted Sept. 30 and the goal is to be discharged on Oct. 3. It is a bit of a rude awakening to return to the hospital so soon after such a wonderful celebration but we are hanging in there, as always, together.
Matt was admitted to the hospital again a week ago Monday. He had a stomach infection. Which is painful and gave him a fever and did not help his appetite. That seems to be under control now, but his immune system numbers have not been coming up as quickly as we had hoped. So it looks like they will do another round of chemo, to wipe out those “bad cells” again.
Matt is so ready to feel well and have some normal life again. The good thing about this hospital stay is that he has a very nice, very large room. A Sofa, 2 lounge chairs, a nice view, it at least makes the days more pleasant. Recently he has also had a nice steady stream of visitors. I was able to spend 4 days with him last week, Jon came for the weekend too. An Uncle, some cousins and friends have stopped by too. Of couse Lindsay is his most important daily visitor. They have lots to do each evening with finalizing their wedding plans.
We are making wedding preparations here too, buying dresses and suits, ordering food and beverages, and planning music. Alan even has the pizza oven ready to go. But we really are praying for Matt that the doctors and the healing hand of God will touch Matt now. He wants to feel good for the wedding! Tomorrow a local group of men called “Men of Faith” are having a prayer breakfast and Matt is their special “guy” for the morning. So please join along with about 100 men tomorrow morning and please pray for Matt, healing and comfort and miracles.
Last weekend we had a Witmer family reunion. The Enos and Hannah Witmer family of 13 children, and their children and grandchildren. I believe there were about 160 that came sometime during the weekend. We had a wonderful Sunday service too, including the group praying for Matt and our family. Also there were special prayers for a young nephew with a back injury from a farm accident and a blessing for two of the great nephews going on a canoe adventure. You can follow their ministry and blog here, http://www.sugar2salt.com/. We are very thankful for the prayers and support of our family and friends.
The month of July has been an up and down time for Matt. He seemed to be status quo for the first part of July, but two weeks ago, his white cell count went on the rise again. He was admitted to the hospital on July 26 feeling pretty sick. The doctors had warned us that he would probably need some chemo to keep the leukemia cells knocked down. Matt had a reaction to one of the chemo drugs that literally “drugged” him. Jon arrived late Friday evening expecting to keep Matt company in the hospital, play games, watch movies etc. I talked to Lindsay mid-morning on Saturday and she said that Matt was really sleepy that morning. Then I talked to Jon about 1pm and he was still basically sleeping. At that point everyone became concerned. Matt just could not really wake up, and when he was awake he was disoriented and confused. After running tests they concluded that is was a side effect of one of the chemo drugs. Sunday afternoon they decided to give him an antidote to help him come out of it. Within a few hours he was somewhat better, but it took until Tuesday for him to really be awake and not confused. This was an unexpected and hard side effect that was scary to Matt and all of us.
Matt came home on Thursday and is recovering from the harsh chemo. He is really suffering this weekend with stomach pain. Matt is on a hard journey. Please continue to pray for healing, health, comfort, and peace of mind.
The hospital does have some helpful support. There is a wonderful woman chaplain that has been really helpful to Matt and Lindsay. There are also volunteers that come around and do Reiki. Matt really appreciates your prayers. I am also so grateful to all the wonderful friends and neighbors that constantly ask about Matt and tell us they are praying for him. We love and appreciate you all.
Sue and Jenna, (Lindsay’s Mom and sister), Amanda and I hosted a bridal shower for Lindsay at Jim and Beth’s home, north of Philadelphia. It was a beautiful early July Sunday afternoon. Lindsay was beautiful and it was a great day for all of us. Matt and Lindsay were able to have a great Saturday sailing with their friend Bryce before Matt went into the hospital. They also started mailing out wedding invitations this week!
Matt has had several appointments since our last post so I wanted to share an update. Generally, everything has been going well. We are hopeful that Jon’s healthy donor cells are working hard to fight the cancer cells. An indication that this is happening is that Matt’s white blood count has been decreasing over the past several weeks, rather than increasing. My understanding of what this means is that the leukemia has not been replicating as it typically would. The doctors see this as a very positive response to taking him off immunosuppressants. So that is good news, and we truly believe that it is a sign of God’s presence affirming our (and your) prayers for a healing miracle.
Matt has been struggling day to day with nausea, lack of appetite, fatigue, and most recently, a pain in his side. At his doctor’s appointment yesterday, the doctors determined that Matt has an enlarged spleen (which was causing the pain in his side). This is apparently common in leukemia patients. The treatment is steroids, so Matt has started taking those. The steroids should also help him feel better in general.
Because nausea is a common symptom of graft vs host disease, Matt had to get a double endoscopy on Monday (“double” meaning that they go in both ends). That procedure involved getting tissue samples from areas along Matt’s gastrointestinal tract to biopsy and check for graft vs host disease. (Luckily Matt was fully knocked out during this procedure and doesn’t remember a thing.) We will get the results of this procedure on Friday. Depending on the results, Matt may be admitted to the hospital in preparation for a DLI (donor lymphocyte infusion) as early as next week. The DLI involves four days of chemo, and then an infusion of lymphocytes (a particular type of white blood cell) from Jon. Then a few days of recovery in the hospital for a total stay of 6-10 days. The doctors expect to be able to set dates for the DLI on Friday, so we will have more to share then.
The best bit of practical good news from all this has been that Matt is able to eat fresh fruit. And he has been eating a lot of it! Blueberries, cherries, mangoes, watermelon, apricots – he loves it all! A daily smoothie has become a habit. We enjoyed a day by the pool at Jim & Beth Styer’s on Sunday, which included a picnic of fruits!
My sister has been visiting us since Saturday, and we have enjoyed her company and help with meals and dishes. Plus my parents are coming all the way from Oregon tomorrow and will spend the holiday weekend with us. So we feel the support from all directions! Thanks to all of you holding Matt in your thoughts and prayers.
The road to Matt’s recovery from the bone marrow transplant is very long, and unfortunately Matt has hit a very rocky patch. At his doctors appointment on Monday, June 13, Matt was told that his white blood cell count was elevated and there were the presence of some Leukemia cells again. This was shocking, scary and very frustrating news. The only immediate action was to have Matt go off immunosuppressants (medicine to prevent rejection of Jon’s cells). They are now waiting a few weeks to see how Matt responds to Jon’s cells not being suppressed. The hope is that the healthy cells from Jon will be able to fight off the cancer cells. Matt has a doctors appointment this Monday, June 20 to find out more about the next course of action. It has been a rough week since then. A bit of good news is that on Friday the doctor emailed to say that his most recent lab results looked good – his white cell count was down significantly from Monday.
None of us really know what this means. However, after hearing this very troubling news, on Tuesday morning I was standing at my kitchen sink and I felt a whisper in my heart. This whisper said to me, “I know that you are very thankful for the wonderful Ivy League doctors and great hospital, but now it is time to ask me for a miracle.” So, over this week, I have been asking everyone to pray for a healing miracle for Matt. Healing for his body, his emotions and his spirit. But we also ask for peace of mind in enduring this unknown time. I believe that Jesus is a great healer. Please pray along with us.
All of us are spending the weekend as a family with Matt and Lindsay. It is a wonderful way to spend Father’s Day together. Thanks to the generous giving of Grandpa and Grandma Witmer and the Aunts, Uncles and Cousins, we got a Kinect today. We look pretty funny playing sports games, batting around in the air. Gets us moving and sure makes us laugh! Thanks dear family!!
It has been a year since Matt (and all of us) have been on this roller coaster journey. Matt is at home, trying to not be too bored, recuperating. We had a great weekend with Matt, Lindsay and Jon at Jim and Beth’s country home. We had a good time doing nothing but cooking, eating, sitting on the patio, chatting, reading, being together and celebrating Jon’s birthday. Matt is still limited in his activities, and has to stay away from being around too many people. Healing is a slow process. Keep him in your prayers, as he still deals with fatigue, upset stomach, headache, sleeplessness… However, he seems to also be making good progress. He had a bone marrow biopsy about a week ago and we expect results from that this week. Everything seems to be going well according to the doctors. Here are some photos from our weekend!