Saturday, June 28, 2008
Thursday, June 26, 2008
Just In Day +92
Well we went to clinic today and everything looks good!!!s
ANC 3200
WBC 4.6
PLT 211
They took him off 2 meds and cut his magnesium down.
We also had a consult about radiation but everything is still on the fence. We aren't sure he really needs it. After all his 100 day tests are done we will know more on what everyone thoughts are. July 1st will be test day!!
It was a very long day, we started at 9:30 and left at about 2:15!!!
Thanks to everyone who is checking in on Tyler.
Please leave a comment,just click on comment at the right hand corner and leave us a message. We love to hear from you!!! You can leave as anonymous and not have to sign in I think.
Thanks
KJC
ANC 3200
WBC 4.6
PLT 211
They took him off 2 meds and cut his magnesium down.
We also had a consult about radiation but everything is still on the fence. We aren't sure he really needs it. After all his 100 day tests are done we will know more on what everyone thoughts are. July 1st will be test day!!
It was a very long day, we started at 9:30 and left at about 2:15!!!
Thanks to everyone who is checking in on Tyler.
Please leave a comment,just click on comment at the right hand corner and leave us a message. We love to hear from you!!! You can leave as anonymous and not have to sign in I think.
Thanks
KJC
Saturday, June 21, 2008
Day +87
Day+ 87
I guess I haven't updated for a little while! Tyler had an appointment a little over a week ago and things looked pretty good. They decided to start weening him off the Tacro (anti-rejection med) which he wasn't taking very much anyways because his system didn't metabolize it well.I guess they want to have a consultation about radiation to make sure everything is gone on Thursday 6/26. I'm not sure what they want to do, mantle field or Total Body I guess we will find out. I am still researching it to see if it would do him any good or not. It's so hard to know what is best for him.
Tyler is out attending a couple of classmates Grad parties (outside ones)and trying to be semi-normal again.
Thanks to everyone for checking in and leaving messages! It means alot!!
KJC
I guess I haven't updated for a little while! Tyler had an appointment a little over a week ago and things looked pretty good. They decided to start weening him off the Tacro (anti-rejection med) which he wasn't taking very much anyways because his system didn't metabolize it well.I guess they want to have a consultation about radiation to make sure everything is gone on Thursday 6/26. I'm not sure what they want to do, mantle field or Total Body I guess we will find out. I am still researching it to see if it would do him any good or not. It's so hard to know what is best for him.
Tyler is out attending a couple of classmates Grad parties (outside ones)and trying to be semi-normal again.
Thanks to everyone for checking in and leaving messages! It means alot!!
KJC
Tuesday, June 10, 2008
Update 9 of 9Older Oldest 9 June 10, 2008 at 09:46 AM EDT
Oh the excitement around here!!! Tyler graduated High School!!!
But before we could do that of course we have had lots of storms here in Ohio and we lost two big trees and our electric line went down accross the road soooo, (this was Friday) all night John and JP sat out guarding the line so no one would run into it. Saturday after I got out of work here Matt Meyers had helped get our electricity back on our house (Toledo Edison apparrently had too much going on) and Jim, Rick Beeker and Jason Beeker came over and did a great job of cleaning up the trees and making sure our shed etc didn't receive any more damage.
Then up early Sunday to get everything ready for graduation. It was so hot that Tyler sat in the office until it was time for the kids to do their diplomas etc. When they called Tyler's name all the kids and alot of parents gave him a standing ovation. He was so suprised but very pleased at the same ( I am tearing up just talking about it. What great kids)!. The kids were going to wear masks in his honor but the principal was afraid other parents might be upset. That is ok cause it was their graduation also and just the thought that they would do that was wonderful! My camera was acting up (of course) so some of my pics are a little blury, I will check with some others to see if they have some pics. Thursday we go to UM for visit and blood work, will write more then.
I posted this pic on the front of his carepage< I just like the attitude!!!! These are two of Tylers friends John O and Frank B.
KJC
Oh the excitement around here!!! Tyler graduated High School!!!
But before we could do that of course we have had lots of storms here in Ohio and we lost two big trees and our electric line went down accross the road soooo, (this was Friday) all night John and JP sat out guarding the line so no one would run into it. Saturday after I got out of work here Matt Meyers had helped get our electricity back on our house (Toledo Edison apparrently had too much going on) and Jim, Rick Beeker and Jason Beeker came over and did a great job of cleaning up the trees and making sure our shed etc didn't receive any more damage.
Then up early Sunday to get everything ready for graduation. It was so hot that Tyler sat in the office until it was time for the kids to do their diplomas etc. When they called Tyler's name all the kids and alot of parents gave him a standing ovation. He was so suprised but very pleased at the same ( I am tearing up just talking about it. What great kids)!. The kids were going to wear masks in his honor but the principal was afraid other parents might be upset. That is ok cause it was their graduation also and just the thought that they would do that was wonderful! My camera was acting up (of course) so some of my pics are a little blury, I will check with some others to see if they have some pics. Thursday we go to UM for visit and blood work, will write more then.
I posted this pic on the front of his carepage< I just like the attitude!!!! These are two of Tylers friends John O and Frank B.
KJC
Update 8 of 9Newest Newer Older Oldest 8 May 29, 2008 at 08:51 PM EDT
Everything looking Good! We went to Mott today and did bloodwork and all looks pretty good. Platelets are continuing to creep up and white cells are 4.0. ANC 3,000 so thats great!They also told Tyler that if he wears a mask he can walk with his class to graduate. We are thrilled! He has missed so much in his high school career, we were afraid to ask. We waited to see how he did before we asked.
We talked to Mr Hill and Mr Piv today and he should average out to about a 3.29 or so and they are willing to make what ever arraingements we need to get him through the ceremony so he should be good to go!!!
Thanks all
KJC
Everything looking Good! We went to Mott today and did bloodwork and all looks pretty good. Platelets are continuing to creep up and white cells are 4.0. ANC 3,000 so thats great!They also told Tyler that if he wears a mask he can walk with his class to graduate. We are thrilled! He has missed so much in his high school career, we were afraid to ask. We waited to see how he did before we asked.
We talked to Mr Hill and Mr Piv today and he should average out to about a 3.29 or so and they are willing to make what ever arraingements we need to get him through the ceremony so he should be good to go!!!
Thanks all
KJC
7 May 27, 2008 at 04:19 PM EDT
I haven't posted much lately, sorry about that, Tyler continues to plug away,doing well!We had a busy weekend getting much neede yard work done,planting and putting up a fence. Of course Tyler wasn't able to help with much and I think that bugs him a little. Also baby brother Ryan passed his drivers test so watch out he is on the road!!!! We have an appointment Thursday for blood work and to see Doctors,I will post more then.
I want to ask everyone for some extra prayers for some of our friends that are having some difficulty with there treatments Carly T,Nicholas R.,and Carson,and Allen B.,Please send some extra prayers their way!
Thanks
KJC
I haven't posted much lately, sorry about that, Tyler continues to plug away,doing well!We had a busy weekend getting much neede yard work done,planting and putting up a fence. Of course Tyler wasn't able to help with much and I think that bugs him a little. Also baby brother Ryan passed his drivers test so watch out he is on the road!!!! We have an appointment Thursday for blood work and to see Doctors,I will post more then.
I want to ask everyone for some extra prayers for some of our friends that are having some difficulty with there treatments Carly T,Nicholas R.,and Carson,and Allen B.,Please send some extra prayers their way!
Thanks
KJC
Update 6 of 9Newest Newer Older Oldest 6 May 19, 2008 at 02:41 PM EDT
Well nothing much happening right now, YEH!
Tyler is still doing well. UM has called today to start setting up more tests to make sure the hodgkins isn't coming back. I guess the first week of July they want to do eye tests, PET CT, Heart Echo, chest x-ray, pulmanary test, etc. I don't know the exact date yet she said she would call back.
We are also trying to get this graduation thing under control.
It's hard to get too excited when we are not sure what they will let him do. Our plan is to mask him up and let him walk with his class mates! Then we have the whole graduation party thing etc. But I think he is getting excited, I hope we can work it out!
KJC
Well nothing much happening right now, YEH!
Tyler is still doing well. UM has called today to start setting up more tests to make sure the hodgkins isn't coming back. I guess the first week of July they want to do eye tests, PET CT, Heart Echo, chest x-ray, pulmanary test, etc. I don't know the exact date yet she said she would call back.
We are also trying to get this graduation thing under control.
It's hard to get too excited when we are not sure what they will let him do. Our plan is to mask him up and let him walk with his class mates! Then we have the whole graduation party thing etc. But I think he is getting excited, I hope we can work it out!
KJC
Update 5 of 9Newest Newer Older Oldest 5 May 15, 2008 at 02:56 PM EDT
We just got back from University of Michigan and Tylers CBC are back up, which is very good but now we have to wait and see where is anti-rejection medicine level is. We had to cut it down again because his body was not metabolizing it. So far things look good. Tyler had a breathing treatment to ward off pneumonia, which he said wasn't too bad and we have some skin peeling isssue but they seem to think it is an after effect of his chemo (just a little delayed).
Now we are trying to make sure things are in order for him to graduate. He's afraid his grades won't average out very good being he has been gone so much and it's almost the end of school! Hopefully I will get some good news from school. Everyone has worked so well with us and has been so understanding through his ordeal, THANK-YOU!!! I will be contacting you.
Also I want to thank everyone who has written thoughts of encouragement (by this site or by mail) it really means alot.There are so many people who have been so kind to us and Tyler that we want you all to know how much we appreciate it! Also his Eagle Scout court of honor, we thank everyone who was there,helped, sent cards, helped with the event etc... WE THANK YOU ALL!!!I have been so behind in making sure everyone knows how we feel. It was really cool for Tyler to see how many people care for him.(There sure were alot!!!!) We sure are blessed to have such wonderful friends, family, community, co-workers,and newly made friends etc...
KJC
We just got back from University of Michigan and Tylers CBC are back up, which is very good but now we have to wait and see where is anti-rejection medicine level is. We had to cut it down again because his body was not metabolizing it. So far things look good. Tyler had a breathing treatment to ward off pneumonia, which he said wasn't too bad and we have some skin peeling isssue but they seem to think it is an after effect of his chemo (just a little delayed).
Now we are trying to make sure things are in order for him to graduate. He's afraid his grades won't average out very good being he has been gone so much and it's almost the end of school! Hopefully I will get some good news from school. Everyone has worked so well with us and has been so understanding through his ordeal, THANK-YOU!!! I will be contacting you.
Also I want to thank everyone who has written thoughts of encouragement (by this site or by mail) it really means alot.There are so many people who have been so kind to us and Tyler that we want you all to know how much we appreciate it! Also his Eagle Scout court of honor, we thank everyone who was there,helped, sent cards, helped with the event etc... WE THANK YOU ALL!!!I have been so behind in making sure everyone knows how we feel. It was really cool for Tyler to see how many people care for him.(There sure were alot!!!!) We sure are blessed to have such wonderful friends, family, community, co-workers,and newly made friends etc...
KJC
Update 4 of 9Newest Newer Older Oldest 4 May 13, 2008 at 01:58 PM EDT
Sorry I have not posted an update,we have been a little busy.
Tyler has been doing pretty well. Friday we went to Toledo to Toledo childrens hospital for blood work. Everything looked pretty good. His plalets went up, hemoglobin-up, white cells and ANC (3,470) all up. We did find out also that his first PET CT showed no sign of recurrence of his disease. This is great but it is still early.
Monday we went back to TCH and platlets were down a little,hemoglobin - up a little, but white cells are down from 5.0 to 3.9, and ANC down to 2,700. Boy up and down it's hard to keep up. So far he seems to be fine in his range but I have to wonder why in a couple of days his cells change so much. But it is probably normal.
They keep reminding us he is still early out of transplant (48 days) and things can still bounce around.
It is so hard to understand that he is not "out of the woods" yet, being he looks so great and seems to be doing very well for someone going through so much.
Here are some web sites that tell more about Tyler's ordeal if anyone would like more info.
KJC
www.leukemia-lymphoma.org
www.lymphoma.org
www.cancer.org
www.cancer.gov
www.nlm.nih.gov
www.bmtinfonet.org
www.marrow.org
Sorry I have not posted an update,we have been a little busy.
Tyler has been doing pretty well. Friday we went to Toledo to Toledo childrens hospital for blood work. Everything looked pretty good. His plalets went up, hemoglobin-up, white cells and ANC (3,470) all up. We did find out also that his first PET CT showed no sign of recurrence of his disease. This is great but it is still early.
Monday we went back to TCH and platlets were down a little,hemoglobin - up a little, but white cells are down from 5.0 to 3.9, and ANC down to 2,700. Boy up and down it's hard to keep up. So far he seems to be fine in his range but I have to wonder why in a couple of days his cells change so much. But it is probably normal.
They keep reminding us he is still early out of transplant (48 days) and things can still bounce around.
It is so hard to understand that he is not "out of the woods" yet, being he looks so great and seems to be doing very well for someone going through so much.
Here are some web sites that tell more about Tyler's ordeal if anyone would like more info.
KJC
www.leukemia-lymphoma.org
www.lymphoma.org
www.cancer.org
www.cancer.gov
www.nlm.nih.gov
www.bmtinfonet.org
www.marrow.org
Update 2 of 9
Newest Newer Older Oldest
2 May 07, 2008 at 11:19 AM EDT
We are so exhausted today!!! We were called Monday afternoon and told that Tyler bacteria in his broviak had not cleared up so they wanted to surgery and take the line out on Tuesday. Once you get the phone call then everyone is calling!!! But we got everything rescheduled and we left for Ann Arbor around 6:30am and got home around 5:00pm. What a day!!!! We went and got blood work and then went to clinic. Everything looked pretty good(of what came in while we were there) except his platlets had dropped again!! They are now 76 which still isn't bad but they think maybe the infection or the meds were making them go down. We are now 42 days out of transplant. Then we were off to surgery! Everyone was very nice in ped surgery so... a big Hey! and Tyler is doing well! to all that took care of him! The surgery took longer than expected. They thought they could go in and just pull it out but apparently it was put in to stay.The P A to Dr Hershel said it was really in there and she had to get different instruments to pull it out so he was in longer than expected. She said it wasn't going to fall out that was for sure! While we waited we talked to a nice young couple who's daughter Isabella was getting her port out. They thought a mass inside her head was a cancerous tumor but it was benign and chemo resistent so they ended up taking it out. Now she just has to do check-ups YAH!!! We can only hope to get great news like that. Tyler was in the recovery room about 10-15 minutes before we were whirled off to PET CT. They wanted him to drink Berrium to help contrast their pictures but after just getting out of surgery and Tyler tellig them he thought he'd be sick they decided to do the test without it. I asked them if they thought the test wouldn't be any good without the berrium and they said no they thought it would be fine, but they didn't know if where he just had surgey would show a false positive. I thought they should have just waited but oh well. Now Tyler is home and doing pretty well today. I stayed home with him. They said he would probably be pretty sore and they think the bacteria was pretty localized to his line but they're not completely positive. We go in Friday for more blood work and we shall go from there KJC
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Newest Newer Older Oldest
2 May 07, 2008 at 11:19 AM EDT
We are so exhausted today!!! We were called Monday afternoon and told that Tyler bacteria in his broviak had not cleared up so they wanted to surgery and take the line out on Tuesday. Once you get the phone call then everyone is calling!!! But we got everything rescheduled and we left for Ann Arbor around 6:30am and got home around 5:00pm. What a day!!!! We went and got blood work and then went to clinic. Everything looked pretty good(of what came in while we were there) except his platlets had dropped again!! They are now 76 which still isn't bad but they think maybe the infection or the meds were making them go down. We are now 42 days out of transplant. Then we were off to surgery! Everyone was very nice in ped surgery so... a big Hey! and Tyler is doing well! to all that took care of him! The surgery took longer than expected. They thought they could go in and just pull it out but apparently it was put in to stay.The P A to Dr Hershel said it was really in there and she had to get different instruments to pull it out so he was in longer than expected. She said it wasn't going to fall out that was for sure! While we waited we talked to a nice young couple who's daughter Isabella was getting her port out. They thought a mass inside her head was a cancerous tumor but it was benign and chemo resistent so they ended up taking it out. Now she just has to do check-ups YAH!!! We can only hope to get great news like that. Tyler was in the recovery room about 10-15 minutes before we were whirled off to PET CT. They wanted him to drink Berrium to help contrast their pictures but after just getting out of surgery and Tyler tellig them he thought he'd be sick they decided to do the test without it. I asked them if they thought the test wouldn't be any good without the berrium and they said no they thought it would be fine, but they didn't know if where he just had surgey would show a false positive. I thought they should have just waited but oh well. Now Tyler is home and doing pretty well today. I stayed home with him. They said he would probably be pretty sore and they think the bacteria was pretty localized to his line but they're not completely positive. We go in Friday for more blood work and we shall go from there KJC
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Update 1 of 9
Newest Newer
1 May 01, 2008 at 10:07 PM EDT
Well we went to Mott today and so far things are looking pretty good. Tyler still has his bacteria infection in his line but we are increasing the IV antibiotics, hopefully that will do it! He gets so frustrated on not being done with this and when he hears kids saying they wish they didn't have school, he says becareful what you wish for. He would give anything to be back and be just a kid again!! He's missed alot of the fun things about high school. prom,going to college night preview, dances, different sports and just hanging out with everyone. We still don't know if he will be able to walk with his class or not, we will just have to see what we can do. I know some of this stuff may seem petty compared to all that he has been through but you see it is important to Tyler and he feels like he has missed out. We have tried very hard to do for him so it isn't so hard and I know it has helped and he appreciates it ,but it just isn't the same. We will push on! Tyler is one of the strongest,courageous,brave, and stubborn young man I have ever seen. He doesn't want to let this beat him and I sincerely believe he is meant to do something special with his life! Probably helping others. He's pretty remarkable! KJC
Newest Newer
1 May 01, 2008 at 10:07 PM EDT
Well we went to Mott today and so far things are looking pretty good. Tyler still has his bacteria infection in his line but we are increasing the IV antibiotics, hopefully that will do it! He gets so frustrated on not being done with this and when he hears kids saying they wish they didn't have school, he says becareful what you wish for. He would give anything to be back and be just a kid again!! He's missed alot of the fun things about high school. prom,going to college night preview, dances, different sports and just hanging out with everyone. We still don't know if he will be able to walk with his class or not, we will just have to see what we can do. I know some of this stuff may seem petty compared to all that he has been through but you see it is important to Tyler and he feels like he has missed out. We have tried very hard to do for him so it isn't so hard and I know it has helped and he appreciates it ,but it just isn't the same. We will push on! Tyler is one of the strongest,courageous,brave, and stubborn young man I have ever seen. He doesn't want to let this beat him and I sincerely believe he is meant to do something special with his life! Probably helping others. He's pretty remarkable! KJC
Graduation
Update 9 of 9
Older Oldest
9 June 10, 2008 at 09:46 AM EDT
Oh the excitement around here!!! Tyler graduated High School!!! But before we could do that of course we have had lots of storms here in Ohio and we lost two big trees and our electric line went down accross the road soooo, (this was Friday) all night John and JP sat out guarding the line so no one would run into it. Saturday after I got out of work here Matt Meyers had helped get our electricity back on our house (Toledo Edison apparrently had too much going on) and Jim, Rick Beeker and Jason Beeker came over and did a great job of cleaning up the trees and making sure our shed etc didn't receive any more damage. Then up early Sunday to get everything ready for graduation. It was so hot that Tyler sat in the office until it was time for the kids to do their diplomas etc. When they called Tyler's name all the kids and alot of parents gave him a standing ovation. He was so suprised but very pleased at the same ( I am tearing up just talking about it. What great kids)!. The kids were going to wear masks in his honor but the principal was afraid other parents might be upset. That is ok cause it was their graduation also and just the thought that they would do that was wonderful! My camera was acting up (of course) so some of my pics are a little blury, I will check with some others to see if they have some pics. Thursday we go to UM for visit and blood work, will write more then. I posted this pic on the front of his carepage< I just like the attitude!!!! These are two of Tylers friends John O and Frank B. KJC
Older Oldest
9 June 10, 2008 at 09:46 AM EDT
Oh the excitement around here!!! Tyler graduated High School!!! But before we could do that of course we have had lots of storms here in Ohio and we lost two big trees and our electric line went down accross the road soooo, (this was Friday) all night John and JP sat out guarding the line so no one would run into it. Saturday after I got out of work here Matt Meyers had helped get our electricity back on our house (Toledo Edison apparrently had too much going on) and Jim, Rick Beeker and Jason Beeker came over and did a great job of cleaning up the trees and making sure our shed etc didn't receive any more damage. Then up early Sunday to get everything ready for graduation. It was so hot that Tyler sat in the office until it was time for the kids to do their diplomas etc. When they called Tyler's name all the kids and alot of parents gave him a standing ovation. He was so suprised but very pleased at the same ( I am tearing up just talking about it. What great kids)!. The kids were going to wear masks in his honor but the principal was afraid other parents might be upset. That is ok cause it was their graduation also and just the thought that they would do that was wonderful! My camera was acting up (of course) so some of my pics are a little blury, I will check with some others to see if they have some pics. Thursday we go to UM for visit and blood work, will write more then. I posted this pic on the front of his carepage< I just like the attitude!!!! These are two of Tylers friends John O and Frank B. KJC
The Enemy
My name is Tyler Chambers,
I am currently a senior in high school, 18 years old, I live in Ohio, and have been fighting Hodgkins Lymphoma since 10th grade (16 years old)
In October 2005,I found a lump on the side of my neck about the size of half a tennis ball. I went to my Doctor Jon Dvorak and he immediately sent me for tests and to meet with Toledo Children's Hospital, Dr Dagmar Stein, pediatric oncologist.
I was diagnosed early stage 2 nodular scelrosing Hodgkins Lymphoma
I received 2 cycles of ABVE-PC chemo considered a rapid responder and was given 2 more cycles.I also received involved radiation to the neck and chest area.I went into remission.
In November 2006 I relapsed with the same stage 2, nodular scelrosing, Hodgkins.I was given "ICE" chemo and received an Auto stem cell transplant (a bone marrow transplant using my own cells)(January 2007) at University of Michigan Mott Childrens Hospital.Again went into remission.
In December of 2007After several CTs for a lung infection, they found another tumor forming.
After a PET CT and a CT needle biopsy they discovered I had relapsed again.I did yet another chemo regimen of Gemcytabine, Vinorelbine and Doxil (PEG-doxorubicin) on day 1, day 8 and day 21 until into remission (2 cycles and it showed clean on the PET CT)
A matching donor was found for an Allo stem cell transplant, since neither my mom or dad or two brothers matched. He was a 35 year old man, A+ blood type like me, 10 out of 10 match, and CMV- (which is good)After a SCT chemo regimen of Busulfan, Fludarabine, and small doses of Methotrexate I had my transplant. I am currently 35 days out of transplant (transplant day 3/26/2008) and am doing pretty well!
I am currently a senior in high school, 18 years old, I live in Ohio, and have been fighting Hodgkins Lymphoma since 10th grade (16 years old)
In October 2005,I found a lump on the side of my neck about the size of half a tennis ball. I went to my Doctor Jon Dvorak and he immediately sent me for tests and to meet with Toledo Children's Hospital, Dr Dagmar Stein, pediatric oncologist.
I was diagnosed early stage 2 nodular scelrosing Hodgkins Lymphoma
I received 2 cycles of ABVE-PC chemo considered a rapid responder and was given 2 more cycles.I also received involved radiation to the neck and chest area.I went into remission.
In November 2006 I relapsed with the same stage 2, nodular scelrosing, Hodgkins.I was given "ICE" chemo and received an Auto stem cell transplant (a bone marrow transplant using my own cells)(January 2007) at University of Michigan Mott Childrens Hospital.Again went into remission.
In December of 2007After several CTs for a lung infection, they found another tumor forming.
After a PET CT and a CT needle biopsy they discovered I had relapsed again.I did yet another chemo regimen of Gemcytabine, Vinorelbine and Doxil (PEG-doxorubicin) on day 1, day 8 and day 21 until into remission (2 cycles and it showed clean on the PET CT)
A matching donor was found for an Allo stem cell transplant, since neither my mom or dad or two brothers matched. He was a 35 year old man, A+ blood type like me, 10 out of 10 match, and CMV- (which is good)After a SCT chemo regimen of Busulfan, Fludarabine, and small doses of Methotrexate I had my transplant. I am currently 35 days out of transplant (transplant day 3/26/2008) and am doing pretty well!
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