Hello friends.
Luke's Doctor continues to believe it is inevitable that this cancer will take his life. The most recent scans were further evidence of this reality. The kind of cancer Luke has is very aggressive and difficult to eradicate. The tumor on Luke's lung has gotten larger, and there is evidence of the cancer showing up in some new places in Luke's body as well. While Luke's condition is stable at the moment, the disease is showing steady progression in the face of treatment. The Doctors have no specific timeline, but they would be surprised if he lived much beyond the end of this year. There is so much we hate about our circumstances. We hate the cancer, and we hate that Luke's life has been changed so dramatically. We hate the conversations we are forced to have with Luke and his brothers. We hate having to tell our family and friends terrible news. Through our tears we hate the thought of life going forward without Luke. We hate all of it. The hate we feel is magnified by our love for Luke. He is clever and thoughtful. He loves to learn new things, and he has a gift for teaching others. He is generous. Even though he feels lousy most days, we treasure each day we get to spend with Luke, because we just love being with him. We are thankful that he is still with us today. We are grateful to all of you for your prayers, your tears, your presence, and your kind words. There is so much to be praying for: 1) Luke has decided to participate in another clinical trial, one that involves an experimental protein therapy drug that has shown some promising results in adults with cancer similar to Luke's. He chose this one because it's not chemotherapy, so the side effects are minimal, and he will only need to visit the clinic every other Thursday. While it is unlikely this drug will eradicate the cancer, it could stabilize the growth and give Luke a longer life. 2) Luke is laser focused on his upcoming Work Crew assignment at TimberWolf Lake. It's been a dream and goal of his to serve at a Young Life camp, and we are hopeful that he can make it happen. 3) We just need prayer for overall wisdom in knowing how to best care for Luke. 4) Pray for healing. The observable medical evidence says this cancer will take over Luke's body, but that hasn't happened. God isn't bothered by long odds. We know that at any point He could reach down and scrub the cancer completely out of Luke's body. We are praying every day for that to happen, expecting Him to heal Luke and bring much glory to Himself. As always, our prayer remains the same. We can't stop, WON'T stop praying for God to heal our boy. (James 5:14-16) God bless, James & Lu (for Sam, Jay, and Luke)
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Hello friends!
Has it really been 42 days since Luke's last scans? Apparently, it has. We know this because his regimen consists of two cycles of chemo (21 days each) and then they check progress with a full battery of tests. Since Luke has scans scheduled again this week, it must be that 42 days have passed! We will be spending two full days in Grand Rapids this week. The past month has been rough. The chemo has really affected Luke. He battles dizziness and fatigue. His appetite is low, and he's lost a few pounds. Because he's lost weight, his leg wasn't fitting correctly, but he was able to get it adjusted last week. His primary Docs at DeVos have been proactive about adjusting his chemo regimen, but they haven't found the sweet spot yet. Also, another one of Luke's friends from DeVos passed away, and Luke attended the visitation in Grand Rapids. There really are no words. It's just so heartbreaking. On Thursday, once we know the results of Luke's scans, we will be discussing the next steps in his treatment plan. The scans are always terrifying. We never know what we're going to hear. We are grateful that Luke's overall condition seems stable, but at the same time we continue praying that there would be zero cancer in Luke's body at the end of this treatment cycle. That's always the prayerful goal...zero cancer. Thankfully, Luke has had a BUNCH of visitors this week. It's always amazing how quickly his attitude and countenance improve when folks come over. He just loves people, and he is energized by these frequent interactions. Please don't hesitate to let us know if you'd like to come spend some time with Luke. To be praying: 1) For the "right" balance of diet and meds, that allow Luke to feel better and be more active. 2) For "NED" (no evidence of disease) in the scans this week. 3) For rest and peace for everyone in our family...we are all so very tired. 4) Luke continues to be excited about Work Crew...we're 7 weeks away! We want so much for Luke to feel strong enough to be able to serve and have a great experience. Thanks always to everyone who has prayed, encouraged, sent notes, and stopped to visit. We are thankful we are not alone. Our prayer remains the same. We can't stop, WON'T stop praying for God to heal our boy. (James 5:14-16) God bless, James & Lu (for Sam, Jay, & Luke) Hope is the expectation of a better future. When pain comes, the question of hope moves to the forefront. We've all placed our hope somewhere, but is that a trustworthy place? Is our confidence well-founded? Psalm 39:7 says, "And now, O Lord, for what do I wait? My hope is in you." Am I waiting for hope to arrive, when the fullness of hope is already here? Is there anyone more trustworthy than the Lord? Has He ever broken even one of His promises? Doesn't He alone offer the "expectation of better future" in Christ?
I've been incredibly impressed with Luke's confidence that his future in heaven with Jesus will be better than his life here on earth. He is teaching me about hope. I'm learning that I might SAY that might hope is in Jesus, but often times I LIVE like it's elsewhere. Romans 12:12 says, "Rejoice in hope, be patient in tribulation, be constant in prayer." It is SO difficult to "be patient in tribulation." You want tribulation to be over as soon as possible. How in the world do you find patience in the midst of pain? You "rejoice in hope," and you "remain constant in prayer." Constant. In. Prayer. Here are some specific ways we are praying for Luke: 1) Luke has now completed his 3rd cycle of his new treatment. His blood counts have remained strong, so he has not had any precautionary trips to the ER. We are praying that this will continue, because (obviously) his strong preference is to be at home. 2) Luke has been struggling with dizziness, especially when he is doing physical therapy. This is a common side effect of chemotherapy. We're praying for the dizziness to go away so Luke can move forward with his rehab. 3) Luke is all set for Work Crew from mid-July to early August at TimberWolf Lake. We are praying that he will have the energy (and no dizziness!) to have a great experience, with no visits to the hospital during his session. 4) Luke will receive one more cycle (21 days) and then his next scans will take place on June 8th. His previous scan showed one remaining tumor, about the size of a silver dollar, on one of his lungs. We continue to pray for no cancer remaining in Luke's body, and that it would never come back. Zero cancer, gone forever. As always, many of you have been asking if there's anything you can do to help. As always, the prayers mean the most. We are so humbled by the sheer number of people who are praying for Luke on a daily basis. Thank you. As always, Luke loves visitors. Please contact me if you'd like to come hang out (and drubbed in a card game) with Luke. He perks up whenever people come over. Finally, as always, the gifts cards you have provided have been a huge blessing. The Speedway gas cards help us navigate the trips back and forth to Grand Rapids, the Chick Fil A and Subway and Cracker Barrel (see photo!) cards allow Luke to grab some food, and the Amazon cards and pre-paid Visa cards enable Luke to order cool things for himself and for his friends. Thank you so much. Our prayer remains the same. We can't stop, WON'T stop praying, for God to heal our boy. (James 5:14-16) God bless, James & Lu (for Sam, Jay, & Luke) Hello Friends!
Luke's scans went very smoothly, and the report was extremely positive. His Doctor's were pleased and encouraged. There has been a walnut sized tumor that has persisted in Luke's sacrum bone since he was diagnosed, which they have treated both with chemo and with 28 days of focused radiation. That tumor is gone. It was not visible on yesterday's scans. The other tumor on his back, which had been big enough to biopsy 6 weeks ago, is also gone. There is no new evidence of cancer growth anywhere in Luke's body. So...that's an amazing result. There is still concern. One tumor remains that shows up on the scans. It's on Luke's right lung, and it's about the size of a ping pong ball. It's about the same size and brightness that it was 6 weeks ago. Luke's Doctors want him to continue with his current regimen for two more cycles (42 days), and then see how the lung has responded. Thank you so much for praying. We have honestly been overwhelmed (in a good way!) by the way you all have reached out with prayers and encouragement. We are grateful that Luke's condition is stable, and fervently praying that there would be zero cancer in Luke's body at the end of this treatment cycle. That's the goal...zero cancer. Luke has loved it when friends have come to hang out...please feel free to contact me if you'd like to come visit Luke! Our prayer remains the same. We can't stop, WON'T stop praying for God to heal our boy. (James 5:14-16) God bless, James & Lu (for Sam, Jay, & Luke) Hello friends.
Yesterday I realized it's been over a month since I've posted an update! There's been a lot going on. Luke is hanging in there. Sam and Jay are wrapping up their college schoolwork. Laura and I are...very tired, but also hanging in there. Here's the latest: 1) Luke's treatment regimen continues. Each night he takes 4 different chemo drugs orally. The side effects have been noticeable (dizziness, digestive issues, fatigues, typical chemo stuff) but manageable. Luke is really glad he can take these treatments at home. Each Thursday he visits the clinic in Grand Rapids for blood work and a physical examination from his Doctor. Each cycle is 21 days, and Luke in the 2nd cycle, so he's now on day 29 of his clinical trial. Luke will have diagnostic scans and a bunch of other invasive tests done on day 42, so they are scheduled for Thursday, April 27th. We would, as always, covet your prayers for absolutely zero cancer to be present in Luke's body. 2) We moved! We found a great house, just a couple of miles away, and we moved into it on April 3rd. We had a LOT of help. There's no way I'll remember everyone who helped, but we are so grateful to Ryan, Gary, Kim, Zach, Marj, Wayne, Eddie (The Edifier), Mark, Greg, Arika, Rob, Bob, Brian, Lee, Courtney, Cindy, Roger, Bryan, Frank (The Foreman) Jason, and MAN THAT'S A LOT OF PEOPLE! Luke loves the new house. It's just so much easier for him to get everywhere with everything being on one level. We are grateful for the opportunity to make this change. Oh, and P.S., we put our old house on the market and we received a full price offer on the first day. We said yes :) 3) Luke has a new (see photo) blade prosthetic attachment for running. It's made of a REALLY expensive composite, and not covered by insurance, which is why we are so thankful that Luke's prosthetic guy was able to convince the company rep to donate the blade attachment. Luke has learned how to switch out his regular prosthetic for the blade attachment. It is very slow going, but Luke is working with his PT to master this new skill. It's a really cool thing to watch, because Luke has always loved to learn new things. 4) Luke's buddy Brian Regan came to East Lansing and performed at the Wharton Center. Brian's manager contacted us and invited us to arrive early and hang out back stage with Brian. We gave Brian a framed photo of he and Luke on stage during the show Brian performed back in August, and then we had Brian sign (see photo) an identical photo for Luke to keep. Brian and his manager were very grateful to see Luke, and the comedy show was hilarious. 5) Luke got accepted on the Work Crew for Young Life camp at TimberWolf Lake in late July / early August. Jay will join him as a member of the Summer Staff. It's been a dream for both of them. 6) Jay got a job at the new Chick Fil A restaurant here in town! He will be the perfect Chick Fil A ambassador, and will surely win over the entire staff just by being Jay :) We are so thankful for your continued prayers and encouragement. It means so much. As always, our prayer remains the same. We can't stop, WON'T stop praying for God to heal our boy. (James 5:14-16) God bless, James & Lu (for Sam, Jay, and Luke) Hello friends!
Thank you for continuing to pray for Luke and ask about his condition. Luke's condition is stable, and he has continued his oral chemotherapy treatments until his longer term treatment plan could be established. Yesterday morning the national tumor team discussed the results of Luke's biopsy, and then we spoke with Luke's Doctor in the afternoon. Basically, there are several genes within Luke's tumor that are "over expressed," and so the medical team has identified four medications plus two more natural remedies that address those specific gene anomalies that Luke will begin taking once his clinical trial begins. Luke will have diagnostic scans on Monday, and then a clinic visit on Thursday, and then once everything is confirmed he will begin his new regimen. All of these are oral medications, so Luke will be able to continue his treatments at home. He will also have regular clinic visits and will continue with school and physical therapy at home. We will continue to pray for complete healing for Luke. For a variety of reasons, Luke's condition makes it difficult for him to navigate our two story house. For the past year we have been hoping to transition to a ranch style home, so that Luke can use his wheelchair in the entire house, shower more easily, etc. We have looked at a lot of homes, and then last week we finally found what we've been looking for. We will be moving next month. Luke is very excited, and the idea is growing on Jay. Sam, in his own words, is "indifferent." Our new house is only a couple of miles away, still in Mason, and it's perfect for Luke's current needs as well as our overall long term needs. We will miss our home of 15+ years, but we are very thankful to have the opportunity to make this change. Will you keep praying for Luke? For no more cancer in Luke's body? He needs more healing. His medical team is trying some new approaches, and we want them to work! In the meantime, we are taking things day by day, enjoying our time with Luke, and welcoming a steady stream of visitors into our home on a daily basis. Our prayer remains the same. We can't stop, WON'T stop praying for God to heal our boy. (James 5:14-16) God bless, James & Lu (for Sam, Jay, & Luke) Hello Friends.
Thanks to everyone who has been praying for Luke and asking about his condition. As usual, he is tired and has lots of aches, but otherwise he is feeling pretty good. Luke has had a ton of visitors in the past few weeks, which he has loved, and he has been refining his video gaming and card playing skills. Some other updates: 1) Luke's medical team is moving forward with treatment. The trial he is participating in at DeVos has kids from all over the world involved, with the goal of using specific DNA and RNA testing of tumors to produce better outcomes. The first step was the biopsy on Luke's tumor, which was a success. They were able to get clean and usable samples, and determine (as expected) that the tumor is comprised of metastasized alveolar rhabdomyosarcoma, the original type of cancer from Luke's calf. The samples have been sent to a lab in Arizona for specific DNA and RNA testing. The world of pediatric oncology is very small, since it is relatively rare for kids to get cancer, which means that the children's hospitals around the country share all of their information and treatment strategies with one another. Once Luke's tumor markers have been determined, his Doctor will lead a national tumor board discussion to determine the best treatment strategy for his specific tumor. We will find out what that protocol is during the first week of March. 2) In the meantime, Luke is taking oral chemotherapy each night to hopefully reduce or stunt the cancer in his body until the trial begins. Luke is glad this treatment is done at home, and he is thankful the pills are pretty small, but it's still chemo and that makes him feel lousy. 3) Luke has continued with his good work at Mason High School, with the goal of finishing his 2nd trimester classes. He has worked hard, and even though he has missed a ton of time he is on track to complete the work necessary in all of his classes. We are proud of his determination. 4) Laura's friend Rhonda took Luke (see photos!) out for his first driving lessons! Luke's parents are both outstanding drivers, so we expect him to be very successful behind the wheel :) 5) Luke is in the application process to be on Work Crew at TimberWolf Lake for a month this summer. This has been a dream of Luke's for a long time, and it looks like we'll be able to make it happen. He is very excited to be able to serve in community and help a bunch of kids be able to hear the Gospel. 6) Our oldest son Sam wrote a very cool post about his brother Luke. You can read it here. Would you keep praying for Luke? We are taking it a day at a time. We don't know what the future holds, but we do know Luke is here with us today, and for that we are grateful. He is so great, so funny, such a huge influence on others. Maybe his time here on this earth is short, or maybe it's not, we really don't know. All he can do is honor God and serve others today, knowing that it's up to God to determine the timing and results of everything in his life. Of course, that's pretty much true for all of us, isn't it. Our prayer remains the same. We can't stop, WON'T stop praying for God to heal our boy. (James 5:14-16) God bless, James & Lu, (for Sam, Jay, & Luke) Hello Friends.
The results from Luke's recent scans were not what we hoped for. There is still evidence of cancer in Luke's body. The spot on his sacrum remains, and a few other small spots have popped up on the scans as well. This is very troubling, because the Docs have already thrown their best punches. Luke has had four surgeries, 50+ days of focused radiation, and 18 months of chemotherapy treatments, and yet the cancer persists. His Doc is "virtually certain" that this cancer will eventually take Luke's life. This is not a huge surprise. From the beginning, Luke's prognosis has been very guarded, because this type of cancer is very aggressive and it had already spread throughout Luke's body. Most kids with similar diagnoses do not survive past five years. At the same time, we are just heartbroken for our son, for our family, and for our friends. Luke is a talented and clever young man who seeks to honor God with his life, and his influence on others is tremendous. We expect that to continue, and yet there just aren't words to describe how we are feeling as we face the thought of losing him. So...what now? Please keep praying. I guess maybe we should pray even harder, if that's possible?!? Long odds do not bother God. He is not surprised by this. He is not scrambling for a backup plan. He is trustworthy, and He is in complete control. Luke's Doc has no timeline for what will happen next, and Luke's overall health is pretty good right now. The amount of cancer in his body is very small right now, and he has been off chemo for a few weeks, so he doesn't really have too many symptoms these days. He has spent the weekend with his friends, laughing and playing video games and telling stories just like any 16 year old kid would do. He said it's the "best weekend after bad news" he could have imagined. Luke told me this morning that he doesn't want people to avoid him or be awkward around him. He wants everyone to feel free to approach him and talk and ask questions or whatever. Please let me know if you want to come hang out with Luke. He would love that!! There is a clinical trial at DeVos that Luke has decided to participate in which has some promise. His Doc doubts that it would cure Luke's cancer, but the meds involved are ones that Luke has not had yet, and they've had success in stopping or slowing the growth of Luke's type of cancer with this treatment regimen. They are going to biopsy his tumor on Wednesday, so they can study the cancer and determine its exact markers, and then develop a treatment plan specifically tailored to Luke's specific cancer. We will pray boldly that the next time they scan Luke his Doc will be amazed and speechless because of the miraculous disappearance of any signs of cancer from Luke's body. We also need prayer for peace, patience, healing, and trust in God for our entire family. We are truly exhausted, and we need God to sustain us. Our prayer, as always, remains the same. We can't stop, WON'T stop praying for God to heal our boy. WILL. NOT. STOP. PRAYING. (James 5:14-16) God bless, James & Lu (for Sam, Jay, & Luke) Hello Friends!
The attached photo represents a pretty big milestone for Luke. Luke has had a hospital bed in the living room of our home since September, 2015. Now, it's gone. At the end of December Luke moved back upstairs into his own bed in his own room. We are so thankful for this step, as it represents a huge step for Luke toward independence and fuller mobility. Many of you have asked for more specifics about Luke's diagnostic scans this week. The scans themselves will happen on Tuesday, 2/7 at 9:00, and we will meet with Luke's medical team on Thursday, 2/9 at 11:00 to discuss results and next steps. Thank you so much for your prayers and encouragement, for peace and for full healing in Luke's body. Our prayer remains the same. We can't stop, WON'T stop praying for God to heal our boy. (James 5:14-16) God bless! James & Lu (for Sam, Jay, & Luke) Hello Friends!
The past few weeks have been challenging. The most recent round of chemo has hit Luke with more side effects than usual. He has had nausea, dizziness, fatigue, and random pains. Luke missed an entire week of school, which made him anxious about falling behind. In addition, one of Luke's friends from the clinic at DeVos has taken a turn for the worse, which has been hard on our family emotionally. A few of the moms we've gotten to know at DeVos have created their own word for the fear and nervousness they face every time their child faces diagnostic scans. They call it "scanxiety." We can relate. Luke has CT and PET scans coming up next week, to determine how effective his treatment has been in eliminating the cancer from his body. We have been praying, fretting, hoping, and not sleeping very much, trying to believe truth about God and His grace in our lives. This journey feels a lot like one of those stairways where every time you go up one floor there's a landing. You climb for a while, you reach a plateau, and then you climb some more. For Luke, the first plateau he needed to reach was to stop the advance of the cancer in his body. When he was first diagnosed, the cancer was fast growing, so treatment was aggressive. After multiple surgeries and several months of chemotherapy, the cancer stopped growing. There has been no new cancer growth in Luke's body for over a year. We keep climbing. The second plateau is our friend "NED," which stands for "No Evidence of Disease." Luke has endured two rounds of radiation and continues to receive chemotherapy, all toward the goal of "No Evidence of Disease." We're hoping and praying that, after 18 months of treatment, the scans next week will show no visible cancer in Luke's body. We know that being "NED" is not the top of the staircase. Just because you cannot SEE the cancer doesn't mean it's gone. A cancer patient has to be "NED" for five full years before Doctors will pronounce him or her cancer free. They call this "remission." That would be the next plateau. Then, at the top of the staircase, is a cancer free life. We know that's years into the future for Luke. We also know that you can't become cancer free without being in remission, and you can't be in remission without being "NED." Please consider praying for Luke and for our family this week. Pray for patience and rest. Pray for God's peace in the midst of "scanxiety." Most of all, please pray for all of the cancer to be gone from Luke's body. Zero cancer. That's the goal. Thank you so much for your continuous prayers and encouragement. Our prayer remains the same. We can't stop, WON'T stop praying for God to heal our boy. (James 5:14-16) God bless! James & Lu (for Sam, Jay, & Luke) |
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