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)
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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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