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My turn to ask for a prayer.....
- Thread starter QRTRHRS
- Start Date
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Just to update.
Justin has stabilized nicely and the doctor's are pleased about it. It' s kind of the calm before the storm though because they are going to turn up the "heat" and intensify the treatment. So, his hair will soon fall out and his immune system will be severely compromised. Just about anything could do him in so keep up the prayers.
His father is still wading through a miriad of paperwork so no fund has been put in place other than a loose network of cash donations. Thanks again to all.
Justin has stabilized nicely and the doctor's are pleased about it. It' s kind of the calm before the storm though because they are going to turn up the "heat" and intensify the treatment. So, his hair will soon fall out and his immune system will be severely compromised. Just about anything could do him in so keep up the prayers.
His father is still wading through a miriad of paperwork so no fund has been put in place other than a loose network of cash donations. Thanks again to all.
Latest update.
Justin was able to leave the hospital and go home on Saturday. He will be making two trips a week to the hospital for treatment, about 80 miles one way plus two trips to a clinic per week about 35 miles away. At this time, this is expected to go on for two years or more.
Those of you familiar with upper New York state's winter weather can relate to the task at hand. The family lives near Messena, NY and the hospital is in Burlington, VT.
I asked his father if he was being pushed out due a lack of insurance coverage. The answer was no. He was being sent home because there would be less germs, etc. at home. He is by no means out of the woods yet however so prayers are still very much welcome. He will have to be home schooled.
Justin was able to leave the hospital and go home on Saturday. He will be making two trips a week to the hospital for treatment, about 80 miles one way plus two trips to a clinic per week about 35 miles away. At this time, this is expected to go on for two years or more.
Those of you familiar with upper New York state's winter weather can relate to the task at hand. The family lives near Messena, NY and the hospital is in Burlington, VT.
I asked his father if he was being pushed out due a lack of insurance coverage. The answer was no. He was being sent home because there would be less germs, etc. at home. He is by no means out of the woods yet however so prayers are still very much welcome. He will have to be home schooled.
Look into McDonald House and other charities. Many of them have places for cancer patients and their families to stay while in town for treatment. This might be a way of helping out during bad weather days.
http://www.rmhc.com/mis/mis_family/index.html
http://www.rmhc.com/mis/rmhs/index.html
As a show of our support for Justin, maybe we could all start collecting can tabs >> http://www.rmhc.com/mis/rmhs_poptab/index.html
Doc
- Ronald McDonald House U. S. Locations
State: VT
Name: Ronald McDonald House
House: Burlington, VT
Addr1: 16 South Winooski Avenue
City: Burlington
State: VT
Zip: 5401
Phone: 802 862-4943
Fax: 802 862-2175
Email: rmh-vermont.org
http://www.rmhc.com/mis/mis_family/index.html
http://www.rmhc.com/mis/rmhs/index.html
As a show of our support for Justin, maybe we could all start collecting can tabs >> http://www.rmhc.com/mis/rmhs_poptab/index.html
Doc
Just read this for the first time today. .
Very sorry to hear another child has to go through this kind of trial, may God have him in his arms... we'll keep him in our prayers.
Is he using the services of Children's Hospital aka CMN [childrens miracle network]. . ?
great programs there, I have been involved with many fund raisers for that organization... we'll worth your support as all the $ go to the research and the kids [not some fund raisers pockets with a very small % going to the charaity]
Very sorry to hear another child has to go through this kind of trial, may God have him in his arms... we'll keep him in our prayers.
Is he using the services of Children's Hospital aka CMN [childrens miracle network]. . ?
great programs there, I have been involved with many fund raisers for that organization... we'll worth your support as all the $ go to the research and the kids [not some fund raisers pockets with a very small % going to the charaity]
Children's Hospital aka CMN ?
willyslover
Not sure. They are getting the treatment at Fletcher Allen in Burlington,VT. http://www.fahc.org/Childrens_Hospital/index.htmlThank you for your prayers. I will pass this info on to my stepson.
willyslover
Not sure. They are getting the treatment at Fletcher Allen in Burlington,VT. http://www.fahc.org/Childrens_Hospital/index.htmlThank you for your prayers. I will pass this info on to my stepson.
This is long and upsetting but.....
I decided to share this letter from my stepson.
Hi everyone. Thanks to you all for doing all that you are. You truly are awesome. Justin and I went to Vermont today to get some other test results and medications. The results were not that great. We were informed that he is still very sick and has been moved from the “high risk” category to the “very high risk” category. I’m sure you are wondering what that means…it means that the “high risk”category that he was in had a 50-75% chance of living through the 2 ½ year treatment stage. The “very high risk” category (which he was diagnosed with today) only has a success rate of 30 to 50%. This means that the chemo and other medications will not effectively treat him, he will need to continue the chemo and additional medications for (at least) two weeks beyond the original 29 days of treatment. Then, if the cancer is in remission, he will be moved to another location (more than likely Philadelphia or Boston) to get set for a bone marrow or stem cell/cord cell procedure – success rate even with the proper donor is 40% for reaching adulthood. The first to be tested will be me, Anne and Jen as Jennifer (his sister) has the highest percentage of being a match for Justin (even more than Anne or I). We are all going to Vermont on Monday for all the blood work/tests to see if we are suitable (the results take 2 weeks to get and Justin can’t be tested himself right now because his blood/cell numbers are so low). If these tests don’t come back with great numbers, we will be requesting testing and blood samples from all family on both sides to determine if we have a relative that is compatible. Please don’t go and get yourself tested at this early stage until we learn more, as it is a very expensive procedure and not covered by most health care plans. If further family or friends are needed for testing, we will notify you and appreciate all support. But if we don’t have a suitable match even after the many screenings, then we will go with a “core cell” (placenta type “cord” transfusion). For today, they determined that Justin has my blood type (B positive) , but that is not a solid indicator at all that he and I will be the best match at all. This sure changes a lot and we are again hit with another notice just when we thought things couldn’t get much worse. Sorry to give you such news, but his doctors are very truthful with us (which we asked for from day one) and felt it best to give us this news as soon as it was known/discovered today. They are doing additional tests as I type this to verify these findings (those tests will take 2 weeks to come in), but it does seem that his numbers of cancer cells are not dropping with the meds and chemo as fast as expected at this stage of treatment in the high risk category and they need to be less than 5% before any type of bone marrow/stem cell treatment can begin, and he is still over 50% after the first 14 days of treatment with chemo of this 29+ day stage. We continue to be strong and have faith that the doctors can and will do what is best for him. I’ll tell you, I have never felt so helpless to help someone I love and care about so deeply. I asked the doctor today if there was a way that they could take something from me - anything - to help him and she said no, there isn’t. There is nothing you can do physically to help him now but to be there and support him with everything he is going through. We left at 8am and got back home here at 11pm tonight. Thank you all for all the email and support, we are flustered and find it very difficult to focus on even simple day to day things, I just figured I’d let you all know…I’ll send a copy out to everyone else in my address book, but please forward and notify who you can as well. He had a blood transfusion (took 4 hours today) and so many shots etc to mention. Breaks my heart. Thought I was tough and could handle just about anything life could throw, but this really exceeds my ability to function properly and sleeping is difficult. 30 to 50% is not great odds and I can only sit and wait to see each new day unfold but plan to help in anyway to win over this and have spent my life beating odds and numbers. Thanks for all you have done and what you are doing daily, I know it is also an emotional time for you and your family, as it is for us here and we are thankful to have such fine extended family in all of you! I thought I was ready to fight anything in a physical sense that would come our way, but not this unseen enemy haunting him right now. My soul is sworn to be his protector, but I feel I have failed him none the less and feel powerless each day to help him when he needs me most. He talked with me today during our trip to Vermont,. . about college and going to cooking school when he grows up etc…. I almost had to stop driving the car. . Please continue your efforts. Thank you all so much.
Steve
I decided to share this letter from my stepson.
Hi everyone. Thanks to you all for doing all that you are. You truly are awesome. Justin and I went to Vermont today to get some other test results and medications. The results were not that great. We were informed that he is still very sick and has been moved from the “high risk” category to the “very high risk” category. I’m sure you are wondering what that means…it means that the “high risk”category that he was in had a 50-75% chance of living through the 2 ½ year treatment stage. The “very high risk” category (which he was diagnosed with today) only has a success rate of 30 to 50%. This means that the chemo and other medications will not effectively treat him, he will need to continue the chemo and additional medications for (at least) two weeks beyond the original 29 days of treatment. Then, if the cancer is in remission, he will be moved to another location (more than likely Philadelphia or Boston) to get set for a bone marrow or stem cell/cord cell procedure – success rate even with the proper donor is 40% for reaching adulthood. The first to be tested will be me, Anne and Jen as Jennifer (his sister) has the highest percentage of being a match for Justin (even more than Anne or I). We are all going to Vermont on Monday for all the blood work/tests to see if we are suitable (the results take 2 weeks to get and Justin can’t be tested himself right now because his blood/cell numbers are so low). If these tests don’t come back with great numbers, we will be requesting testing and blood samples from all family on both sides to determine if we have a relative that is compatible. Please don’t go and get yourself tested at this early stage until we learn more, as it is a very expensive procedure and not covered by most health care plans. If further family or friends are needed for testing, we will notify you and appreciate all support. But if we don’t have a suitable match even after the many screenings, then we will go with a “core cell” (placenta type “cord” transfusion). For today, they determined that Justin has my blood type (B positive) , but that is not a solid indicator at all that he and I will be the best match at all. This sure changes a lot and we are again hit with another notice just when we thought things couldn’t get much worse. Sorry to give you such news, but his doctors are very truthful with us (which we asked for from day one) and felt it best to give us this news as soon as it was known/discovered today. They are doing additional tests as I type this to verify these findings (those tests will take 2 weeks to come in), but it does seem that his numbers of cancer cells are not dropping with the meds and chemo as fast as expected at this stage of treatment in the high risk category and they need to be less than 5% before any type of bone marrow/stem cell treatment can begin, and he is still over 50% after the first 14 days of treatment with chemo of this 29+ day stage. We continue to be strong and have faith that the doctors can and will do what is best for him. I’ll tell you, I have never felt so helpless to help someone I love and care about so deeply. I asked the doctor today if there was a way that they could take something from me - anything - to help him and she said no, there isn’t. There is nothing you can do physically to help him now but to be there and support him with everything he is going through. We left at 8am and got back home here at 11pm tonight. Thank you all for all the email and support, we are flustered and find it very difficult to focus on even simple day to day things, I just figured I’d let you all know…I’ll send a copy out to everyone else in my address book, but please forward and notify who you can as well. He had a blood transfusion (took 4 hours today) and so many shots etc to mention. Breaks my heart. Thought I was tough and could handle just about anything life could throw, but this really exceeds my ability to function properly and sleeping is difficult. 30 to 50% is not great odds and I can only sit and wait to see each new day unfold but plan to help in anyway to win over this and have spent my life beating odds and numbers. Thanks for all you have done and what you are doing daily, I know it is also an emotional time for you and your family, as it is for us here and we are thankful to have such fine extended family in all of you! I thought I was ready to fight anything in a physical sense that would come our way, but not this unseen enemy haunting him right now. My soul is sworn to be his protector, but I feel I have failed him none the less and feel powerless each day to help him when he needs me most. He talked with me today during our trip to Vermont,. . about college and going to cooking school when he grows up etc…. I almost had to stop driving the car. . Please continue your efforts. Thank you all so much.
Steve
QRTRHRS, I have to apologize for my lack of a quicker reply as I haven't been to the other forum in awhile. My prayers go out to all of you, especially Justin. As a father of two I can only imagine what the parents and Justin are going through right now. I will keep him in my thoughts and prayers.
Scott W.
Scott W.
all is in Gods hands
QRTRHRS,we pray at home for Justin and his parents,at the end we have to understand,the God has his plans,not allwaysthey are our plans. But never give up,try your best!
I have a 10 year old son,this summer he started to have epileptical seizures,he has learning problems,an as an addition my family is breaking apart. but there is no other way as to do the best we can,and pray,
Werner
QRTRHRS,we pray at home for Justin and his parents,at the end we have to understand,the God has his plans,not allwaysthey are our plans. But never give up,try your best!
I have a 10 year old son,this summer he started to have epileptical seizures,he has learning problems,an as an addition my family is breaking apart. but there is no other way as to do the best we can,and pray,
Werner
Thanks again to all for the thoughts and prayers. Still more bad news. Justin's leukemia has been "associated" or diagnosed as Philadelphia Chromosome Positive Leukaemia. This is much to complex for me to simplify but I will try. Gleaning from this site http://www.geocities.com/HotSprings/Spa/8719/philadel.htm it happens when two chromosomes swap information to create a leukemia specific gene which makes cells resist treatment. In a nutshell, Justin will most definetly need a bone marrow transplant.
I'm here
QRTRHRS,
I am spechless... Suddenly all my troubles seem so petty. Life is so precious and we take if for granted so often. It's sad that it takes something like this for so many of us to realize we have so much to be grateful for. That every morning at breakfast we should hug are children and kiss our spouses and thank god for another day together. I was a late bloomer for finding Jesus, but now that I have I know the truth as it seems many others here do to. This pain and suffering was placed before you, in your hearts. It is not by chance. Gods a smart guy and although it seems to us that this is just unbareable, he's got plan for all of us, especially Justin. I'm in tears reading this post for the first time tonight. I don't know much about bone marrow transplants other than it's not a very plesant proceedure, but when the time comes and if the need should arise I will screen. I'm A+ which I don't think will help, but if there's anything we can do out here, please don't hesitate.
I will pass this thread to others here in Hawaii. We will send our prayers out to all of you...
QRTRHRS,
I am spechless... Suddenly all my troubles seem so petty. Life is so precious and we take if for granted so often. It's sad that it takes something like this for so many of us to realize we have so much to be grateful for. That every morning at breakfast we should hug are children and kiss our spouses and thank god for another day together. I was a late bloomer for finding Jesus, but now that I have I know the truth as it seems many others here do to. This pain and suffering was placed before you, in your hearts. It is not by chance. Gods a smart guy and although it seems to us that this is just unbareable, he's got plan for all of us, especially Justin. I'm in tears reading this post for the first time tonight. I don't know much about bone marrow transplants other than it's not a very plesant proceedure, but when the time comes and if the need should arise I will screen. I'm A+ which I don't think will help, but if there's anything we can do out here, please don't hesitate.
I will pass this thread to others here in Hawaii. We will send our prayers out to all of you...
An update on Justin
First of all, thanks again to all for everything. Steve did briefly tell me to pass on his thanks for the donation on behalf of TDR that some members were a part of. Steve sent out an update and has put together a website for/about Justin. I like the part about the haircut. Please do check his site out.
Justin now has a Website: http://www.sevans.net/justin.htm (site will take about 30 minutes for me to post it)
This site has a day by day (the best that I could do) and also has the latest updates and we will update it as we are home to provide more info. But for now, I’ll fill you in. His cancer/blast cell levels have reached 0% and that means he is in remission. BUT he will have to stay there until we can find a donor for him and it must be a close match due to his Philadelphia Chromosome condition. We just got word that Jennifer (his sister) is a match for him (at 4:15 today), so that is two bits of good news for now. This by no means is a definite cure or any reason to think that he is out of the woods with this cancer, but it is sure a great bit of news for us now. He will be in the hospital next week while the alter his chemo dosages and get him strong for the transplant. We don’t know when this will take place or what part of the country we will have to go to, but we do know that he is now at 0% blasts, and that his sister is a match. I’ll update you when I learn more. Have to go…. Oh, If you did not want to get this email message, I do apologize and don’t wish you update anyone that doesn’t want the mail. If you wish to be removed from these mailing/updates on Justin, please reply with “remove” in the subject area so that I can remove you from my address book. Thanks
Steve
http://www.sevans.net/justin.htm
First of all, thanks again to all for everything. Steve did briefly tell me to pass on his thanks for the donation on behalf of TDR that some members were a part of. Steve sent out an update and has put together a website for/about Justin. I like the part about the haircut. Please do check his site out.
Justin now has a Website: http://www.sevans.net/justin.htm (site will take about 30 minutes for me to post it)
This site has a day by day (the best that I could do) and also has the latest updates and we will update it as we are home to provide more info. But for now, I’ll fill you in. His cancer/blast cell levels have reached 0% and that means he is in remission. BUT he will have to stay there until we can find a donor for him and it must be a close match due to his Philadelphia Chromosome condition. We just got word that Jennifer (his sister) is a match for him (at 4:15 today), so that is two bits of good news for now. This by no means is a definite cure or any reason to think that he is out of the woods with this cancer, but it is sure a great bit of news for us now. He will be in the hospital next week while the alter his chemo dosages and get him strong for the transplant. We don’t know when this will take place or what part of the country we will have to go to, but we do know that he is now at 0% blasts, and that his sister is a match. I’ll update you when I learn more. Have to go…. Oh, If you did not want to get this email message, I do apologize and don’t wish you update anyone that doesn’t want the mail. If you wish to be removed from these mailing/updates on Justin, please reply with “remove” in the subject area so that I can remove you from my address book. Thanks
Steve
http://www.sevans.net/justin.htm
Back to the top.
My wife and I had a real nice xmas with Justin and his family. Barring any complications, the family will be going to Philadelphia on Jan 14th where his younger sister will be donating bone marrow to him.
We found him in amazingly good spirits. Other than the loss of hair, tubes, body stocking and pale skin tone, you would not have known him to be so ill. He had a blood transfusion a few days prior and that sort of charges his batteries. Still, his chances of survival are very slim.
Again, I want to thank those who responded to my original post. For anyone who had missed this, please do check Justin's site. Share in one families ordeal, it may make your situation seem not so bad by comparison.
http://www.sevans.net/justin.htm
My wife and I had a real nice xmas with Justin and his family. Barring any complications, the family will be going to Philadelphia on Jan 14th where his younger sister will be donating bone marrow to him.
We found him in amazingly good spirits. Other than the loss of hair, tubes, body stocking and pale skin tone, you would not have known him to be so ill. He had a blood transfusion a few days prior and that sort of charges his batteries. Still, his chances of survival are very slim.
Again, I want to thank those who responded to my original post. For anyone who had missed this, please do check Justin's site. Share in one families ordeal, it may make your situation seem not so bad by comparison.
http://www.sevans.net/justin.htm
QRTRHRS,
Being recently new to the board I had never seen this post before. Our thoughts and prayers go out to you, your family and Justin. I bookmarked the webpage under my favorites so I can check in on updates. Being the father of two lil boy's (2&6), I couldn't imagine anything like this happening. The only good thing out of this is that kids are usually stronger than us grown up's.
I have a close friend that is a survivor of Leukemia as a kid and another close friend of our's son had cancer at the age of 4. Today he is a ripping terror. At the age of 15 you would never know he had went through such a struggle.
Being recently new to the board I had never seen this post before. Our thoughts and prayers go out to you, your family and Justin. I bookmarked the webpage under my favorites so I can check in on updates. Being the father of two lil boy's (2&6), I couldn't imagine anything like this happening. The only good thing out of this is that kids are usually stronger than us grown up's.
I have a close friend that is a survivor of Leukemia as a kid and another close friend of our's son had cancer at the age of 4. Today he is a ripping terror. At the age of 15 you would never know he had went through such a struggle.
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Issue 128 – Digital Version
Digital Magazines
FREE!
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Renew
Subscribe
Gift Subscriptions
Back Issues
Subscription Status
Address Change Form
Buyer's Guides
Ram Diagnostic Trouble Codes
The Perfect Collection
The Perfect Collection Vol. II
TSB Updates
Dodge/Cummins Historical Overview
Cameron Collection
What Makes Us Tick?
Product Showcase
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