Taylor Posted January 1, 2006 Share Posted January 1, 2006 There is a family in our church whom I have known the Mom (June) since we were both teenagers. This is their announcement of their son Stephen's illness. Please pray for this 13 year old boy. God is a God of miracles and that is just about what it is going to take for this boy to pull through. I just can't imagine much worse news for a family to endure at Christmas time. They are a dear family and Stephen was recently baptized. Taylor In November Stephen (age 13) was carrying William (his little brother age 6) on his shoulders when William moved suddenly and twisted Stephen's back. The following days Stephen complained of aching and twitching in his back. His mom massaged his back muscles and felt what she thought were muscle spasms along his spine. Perhaps that was the first symptom of what has drastically changed their lives - metastatic rhabdomyosarcoma. Leg pain that was presumed to be sciatica was added to Stephen's ongoing backaches. Thursday (12/15) Wayne visited him at school and found him lying on a bench instead of interacting with the other kids. Together they walked up to the gym and Stephen got short of breath, even in such a short distance. Something was definitely abnormal. On Friday (12/16) Wayne (the father) took Stephen in for a doctor's check up. After listening to Stephen's chest, the doctor said there was reduced air flow in the right lung. A blood test and x-ray were ordered. Stephen was frustrated with the whole doctor process, but nevertheless, they got the blood drawn that day and then went home for the weekend. Friday evening, during family tree-decorating activities, Stephen was feeling low and as June (the Mom) looked at him lying on the couch, she felt that something looked wrong. He wasn't himself. On Sabbath June went to church, leaving Wayne home with the kids because Stephen was not feeling up to going out. After she got back, Wayne told her the doctor had noticed reduced air flow in the right lung and they decided to get their stethoscope and listen for themselves. Stephen's right lung was completely silent. June also noticed that his back looked deformed. There was a bulge on his right side. Immediately they took him in for the x-ray that had been ordered and didn't leave until they saw the results. Eighty percent of the right lung was solid white - filled with liquid. This was a serious sign that Stephen needed immediate intervention. After some consultation they decided the fastest route finding the root of the problem would be through the ER. There Stephen was given a cat scan and his parents were told that he had a tumor near his right kidney. More testing was done - the news got worse. The tumor, which Wayne and June at first had the impression was small, turned out to be 11 X 15 centimeters, encompassing his kidney, adrenal gland, aorta and part of his spinal column. The next day, Sunday, they inserted a chest tube and drained 2 liters of fluid off of Stephen's lung. They also took bone marrow biopsies from his hips. There were cancer cells in both the fluid from his lungs and 30% of the bone marrow samples. The doctors began aggressively pursuing tests to determine tumor cell type. It was a confusing picture. On Monday (12/19) they operated to clean out the tumorous tissue that had invaded his spinal cord, preventing progressive impairment of body functions. During this surgery they were able to get a biopsy of the primary tumor for testing. Wednesday (12/21), the final tumor diagnosis was made, and within a few hours, Stephen was started on an aggressive chemotherapeutic regimen. The regimen will involve chemo to shrink the tumor, then surgery to attempt resection of the tumor, then radiation to the tumor bed and finally, more chemotherapy. This schedule will occur over a one year period. We are kicking into battle mode, and are praying for a miracle. Quote Link to comment Share on other sites More sharing options...
Moderators Nan Posted January 2, 2006 Moderators Share Posted January 2, 2006 This is a horrendous diagnosis. I will certainly join the prayers for a miracle of healing for Stephen, according to the will of God, and for support for him and his family during this dreadful time. Quote Link to comment Share on other sites More sharing options...
Taylor Posted January 2, 2006 Author Share Posted January 2, 2006 Thanks so much for all of your prayers, and yes Nan, this is a dreadful dianosis. I understand that this type of cancer is quite rare and agressive. Quote Link to comment Share on other sites More sharing options...
Administrators Naomi Posted January 2, 2006 Administrators Share Posted January 2, 2006 Hello Taylor, Somehow I missed this post until this morning. What a sad thing to happen anytime, especially at Christmas time. Yes, our God is a God of miracles and I join with the family, you, and all the others who are praying for a miracle for Stephen. Please keep us informed of Stephen's progress. Naomi Quote If your dreams are not big enough to scare you, they are not big enough for God Link to comment Share on other sites More sharing options...
Clio Posted January 2, 2006 Share Posted January 2, 2006 Oh Taylor... what dreadful news. I cannot think of a worse diagnosis for this young man, and his family to have to endure. I will also be praying for healing according to the mercy and will of the Father. OH Abba... please.... but according to Thy will, always. Clio Quote A heart where He alone has first place. Link to comment Share on other sites More sharing options...
Dr. Shane Posted January 3, 2006 Share Posted January 3, 2006 Our family will remember this family in prayer. "Even so, come, Lord Jesus." Rev. 22:20 Quote Pastoral Family Counselor... Find me at www.PostumCafe.com Author of Peculiar Christianity Link to comment Share on other sites More sharing options...
Anthony! Posted January 15, 2006 Share Posted January 15, 2006 OH! My Father in heaven, please, in the name of Jesus and I claim the Blood of Jesus to attend this prayer... Father please hear my prayer for Jesus' sake and for this lad Stephen... because I am an unfit vessel for thee... Father, please heal the boy from this cancer... Give comfort and strength to him and his family... Please guide and inspire the medical teams working in this situation... Please strengthen his system so that healing and victory over this cancer will come at last... Father, we know it will be a long road... May the Presence of Jesus, through our Comforter, The Holy Spirit be with them all... Please send your Holy Angels to protect them from harm, evil and danger... In the Wonderful Name of Jesus Christ, and by the Sacrifice and Merits of His Blood and Grace, Amen and Amen! Quote Link to comment Share on other sites More sharing options...
Clio Posted January 15, 2006 Share Posted January 15, 2006 In unity of faith with Anthony, Abba, I add my plea to his. Amen. Quote A heart where He alone has first place. Link to comment Share on other sites More sharing options...
Administrators Naomi Posted January 16, 2006 Administrators Share Posted January 16, 2006 Taylor, Do we have an update on Stephen? Still praying. Naomi Quote If your dreams are not big enough to scare you, they are not big enough for God Link to comment Share on other sites More sharing options...
Clio Posted January 16, 2006 Share Posted January 16, 2006 Updates are good... any news. Clio Quote A heart where He alone has first place. Link to comment Share on other sites More sharing options...
Taylor Posted January 16, 2006 Author Share Posted January 16, 2006 Update: December 31, 2005 at 06:37 AM PST You should have seen the nice color in Stephen's cheeks last evening! Especially good to see since he's had extreme fatigue and difficulty getting up at all for a couple of days. He saw his doctor yesterday. His white counts are extremely low (100). They did go ahead and give him the planned chemo infusion, but they also gave him a blood transfusion. The visible portion of the tumor on Stephen's back appears to be shrinking, in just 1 week of chemo. Stephen weighed in at 96 pounds yesterday, which is what Audrey said she will use as his starting point for the weight gaining contest. Michael LaiPang, Photographer, came to the house Thursday afternoon and got some nice pictures of the family. He donated his time and skill, and we are grateful. Our niece and her husband are here for a few days to help us out with William. My mom is doing a great job of running the household. We are sorting through our work issues. We are grateful to both our LLU and Kaiser employers for their understanding and flexibility as we work out a schedule where either Wayne or I will always be with Stephen. Wayne and I each put in a few hours at work this week...concentrating is still a challenge. God really does meet each need as it comes up. Quote Link to comment Share on other sites More sharing options...
Taylor Posted January 16, 2006 Author Share Posted January 16, 2006 Today (Monday 1/9) Stephen started his third round of chemo. This involves going to the pediatric oncology office and getting IVs all day long (we were there almost 10 hours). We watched Candid Camera most of the time and laughed a lot. Thanks to those who sent those DVDs! We've still got lots of them left, but are realizing that comedy is a great thing. Anybody have any more good ideas? The doctor seems to be quite pleased with how Stephen is doing. She's convinced the tumor has shrunk dramatically, and so are we! Prayer and chemo are working! He hasn't gained weight yet (in fact he lost a bit, but the doctor said that's the tumor shrinking). We have the 8-10 hours of chemo each day all this week, so it's going to be hard for Stephen to get in much visiting until the weekend. Thanks for the cards and phone calls. Even if we're not answering them all (we've been really busy with all that's going on), we are reading/listening to and appreciating each one. Quote Link to comment Share on other sites More sharing options...
Taylor Posted January 16, 2006 Author Share Posted January 16, 2006 January 15, 2006 at 07:36 PM PST What a week! We've finished the most intense chemo week in the regimen, and Stephen's oncologist can't believe how well his body is tolerating it. Most kids have to be hospitalized for this regimen, but Stephen not only stayed out-patient, but on Friday they let us come home at 1:30 pm and finish up the final bag of IV fluids here. When Stephen gets to this week of the chemo cycle next month, they said they will try to send us home with our last bag of IV fluids every day. While the end of the week was tolerable in the chemo infusion room, the first couple of days were so crazy busy that we came home with our nerves fried! Late Friday afternoon we began to wonder if they'd given Stephen enough chemo...He picked up his IV pole and chased his dad around the dining room table with it like a pitch fork. =) Then he came running out to meet June in the driveway on her return from an errand. What a beautiful site to see such a burst of energy. That's the boy we have known all these years. This coming week is the break between chemo cycles. Typically white blood cell counts drop from 7-10 days after a chemo round starts...that means most of this week Stephen's counts will be low. He will be up for some HEALTHY visitors in the afternoons from 4-6 pm. If Stephen's counts come back up in time, he will be readmitted to the hospital on January 23rd for several days to CT scan the progress of tumor shrinkage and start the second 3 week chemo regimen. Quote Link to comment Share on other sites More sharing options...
Clio Posted January 16, 2006 Share Posted January 16, 2006 Taylor, This is AWESOME news. Jesus, please hold Stephen continually in Your hands. Make his healing easy, and not hard on his disease ravaged body. We thank You. Amen Quote A heart where He alone has first place. Link to comment Share on other sites More sharing options...
Nicodema Posted January 17, 2006 Share Posted January 17, 2006 Amen. Lord thank You for your marvellous works of incredible grace and mercy in our lives, and in the lives of this family. Father we know You are not distant; you are He who is touched by the feeling of our infirmities. We know Your heart of love is yearning for this child's recovery. Be very near to Stephen, Lord. Guide his family and his doctors to make the smartest and wisest decisions for his care, and to be alert and observant of his condition. Work mightily Father to speed Stephen's healing. Thank You again for Your sustaining love. In Jesus' name we pray. And Father I add my agreement to the prayers Clio, Anthony and others have already brought to Your beautiful throne for this dear boy. Quote "After such knowledge, what forgiveness?" -- T.S. Eliot Link to comment Share on other sites More sharing options...
Anthony! Posted January 20, 2006 Share Posted January 20, 2006 Oh Father and Lord, I want to give you praise and thanks for the apparent good news... Thank you Jesus for again showing us how you are the great physician... Father, may this case please continue in this path of recovery, energy and love... Please give special grace and strength to the family members with the challenge of nervous exhaustion... Please continue to allow this family to bask in your love and have the peace that only Jesus can give through the Holy Spirit... May your hand and your Holy Angels please continue to guide and bless the medical team... You are worthy of all recognition and honor, Lord God our Father, with Thy Son Jesus Christ and the Holy Spirit... Thank you ever so much, we are grateful! Quote Link to comment Share on other sites More sharing options...
Taylor Posted February 2, 2006 Author Share Posted February 2, 2006 January 31, 2006 at 06:00 AM PST Another round of chemotherapy is behind us. Stephen got out of the hospital Sunday and continues to do well. He's gained 3 lbs. The final analysis of his CT scan was that the tumor is about 1/4 the size it was. This is obviously great news! But there still appears to be tumor around important structures like the diaphragm, the celiac plexus, and the inferior vena cava. We're praying that every single chemo molecule knocks out another cancer cell. The next two weeks should be primarily quiet here at home. Quote Link to comment Share on other sites More sharing options...
Nicodema Posted February 2, 2006 Share Posted February 2, 2006 The weight gain and CT scan sound like good news! Let's continue to pray for Stephen. Quote "After such knowledge, what forgiveness?" -- T.S. Eliot Link to comment Share on other sites More sharing options...
Moderators Nan Posted February 3, 2006 Moderators Share Posted February 3, 2006 Amen, and I too will continue with my prayers. Quote Link to comment Share on other sites More sharing options...
Clio Posted February 6, 2006 Share Posted February 6, 2006 Quote: Taylor said: January 31, 2006 at 06:00 AM PST Another round of chemotherapy is behind us. Stephen got out of the hospital Sunday and continues to do well. He's gained 3 lbs. The final analysis of his CT scan was that the tumor is about 1/4 the size it was. This is obviously great news! But there still appears to be tumor around important structures like the diaphragm, the celiac plexus, and the inferior vena cava. We're praying that every single chemo molecule knocks out another cancer cell. The next two weeks should be primarily quiet here at home. Thank You, Jesus. In times like these we cherish the small steps, the baby steps, and look eagerly forward to the leaps and bounds this child shall take. We thank You for the weight gain, the tumor reduction, and the quiet and rest available after walking out the hard times of chemo treatment. Lean down and touch this child and his family, with healing, undeniable healing from Your precious, gentle Hands. I ask it please, according to Your instructions, and the Blood Covenant which covers each of us. In Your Blessed Name, Amen. Quote A heart where He alone has first place. Link to comment Share on other sites More sharing options...
Toni Posted February 19, 2006 Share Posted February 19, 2006 I am praying that Stephen continues to make gains, and that if it is God's will for him, to be whole again. Praying that his family will be held in the Father's arms. Quote Toni Link to comment Share on other sites More sharing options...
Taylor Posted July 6, 2006 Author Share Posted July 6, 2006 35 July 04, 2006 at 01:27 AM PDT Well, campmeeting was everything Stephen had hoped for! He glowed! We were all so grateful that he was able to be there. He never once used his wheelchair, but wandered the campus with his friends. Friday night they interviewed him in the Early-Teen Tent. He rose to the occasion in Stephen-style! On leaving campmeeting Sunday, Stephen's health began to decline. It's a long, complicated story that does not yet have an ending. We took an ambulance ride from the little hospital in my parent's town of N. Conway NH over to the referal center hospital, Maine Med in Portland Maine a few hours ago. He is at this moment undergoing a diagnostic lumbar puncture. Stephen has been in a worsening delirious state, where he does not appear to recognize me or anything else, for the past 10 hours. Preliminary CT scans show that it is not related to brain metastisis...their deferential diagnosis at this time is leanig toward some sort of viral encephalopathy (inflamation of the brain). Please pray for wisdom and skill for the doctors as they try to figure out this complicated picture. Please pray that Stephen is pain-free. Please pray that we can make it home (soon). Thank you. June Quote Link to comment Share on other sites More sharing options...
Taylor Posted July 6, 2006 Author Share Posted July 6, 2006 That was posted on their website. June is Stephen's Mom.Wayne is his dad. Next update: 36 July 04, 2006 at 11:57 PM PDT It's hard to know what to say, so I'll just stick to the facts as we currently understand them. The lumbar puncture (spinal fliud from Stephen's back) appears to show cancer cells. His confusion is apparently related to cancer recurrence/spread to the lining of his brain and spinal cord. We're hoping that steroid medications will shrink some of this and he'll be able to recognize us again. That may or may not be the case. He currently is still not recognizing family. Stephen is being med-evacued from Portland, Maine to Loma Linda tomorrow (Wednesday, July 5). We expect him to leave Portland around 11:30 am and to arrive here at Loma Linda mid-afternoon or so. I just got done reading the latest Care Page messages. They mean so much to us. Thank you for your presence in prayer. Tomorrow William starts 3rd grade. Wayne Quote Link to comment Share on other sites More sharing options...
Taylor Posted July 6, 2006 Author Share Posted July 6, 2006 July 05, 2006 at 08:52 PM PDT We made it home!!! Stephen appears to visually recognize his family. It is a little difficult to know what else is happening in his head since he does not talk, or respond in a recognizable physical way to our questions. Carcinoma meningitis is the confirmed diagnosis. We've been in deep conversation with the medical team about various treatment options at this point. When looking at the big picture, we are opting to not pursue further chemo or radiation at this time. We have other decisions still to make regarding TPN, steroid usage, etc. Tommorrow we plan to bring Stephen home on hospice. Sometime after I've slept, I will tell you more about all the wonderful people we have interacted with in the past few days. There are many, many kind souls on this planet! June Quote Link to comment Share on other sites More sharing options...
Taylor Posted July 6, 2006 Author Share Posted July 6, 2006 My heart just aches for his family. June and I have known each other since HS days and we attend the same church as they. This has GOT to be hard for them! Thanks for your prayers!! Taylor Quote Link to comment Share on other sites More sharing options...
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