Every time around Nov/Dec scans the news is always bad, Tyler either is diagnosed or relapsed with Hodgkins.
Even his oncologist had commented that they neede to stop scanning him at this time of the year.
But NOT this time! Tyler has officially broken the chain!!
His PET CT showed CLEAN!!
WOOHOO!!!!!
It has only been 9 months but this was a very nerve wreaking time!
Also blood counts are good, pulmonary was good, and cGVHD looked very good!
The BMT doc dropped his tacro down .5mg a day and his steroids down 16mg.
A very, very good day!
Party at One Year!
Everyone will be invited!
He is on his way! I feel very good about it!
He has never made a year yet but this is going to be the time! And beyond!
Love to all
And have a very Merry Christmas!!!
Kelly
Thursday, December 18, 2008
Tuesday, December 2, 2008
IN A Cloud
Ever feel like your mind is in a cloud?
Lately I feel I just can't think straight!
I am sure it's just the stress of upcoming scans but it sure is taking a toll on me. I have been trying to get hours at work but sometimes... it's the little blunders lately! Oh well, trying!
I want to thank everyone for writing in all the well wishes to Tyler!
It's nice having such wonderful and supportive friends and family!
Tyler is doing pretty good.
His first appointment back won't be till the 15th and ECP again the week of xmas.
His eyes,skin and mouth are looking better so maybe the ECP is working. He is having an issue with cramps in his calf off and on. He is trying stretching to relieve it. Probably the steroids.
I have talked to a Grandma of a young man who had a transplant a few months before Tyler. Unfortunately his GVHD is getting the best of him and he is on life support. Please say a prayer for Allen and his family, it doesn't look good. He has been in pain and hasn't walked for a long time.
I also talked to a friend and a little girl who was being treated for ALL when Tyler was being treated has relapsed and will need a transplant.We're praying for you Vesta! I don't know for sure but I think she is 5 or 6 now.
Also Eric, praying for a successful 2nd transplant
Adrienne hoping they will be able to pin point the pain and find a new trial for you
Noah hoping transplant will not be too far off
Also prayers for all our cancer warriors as they courageously fight their battles! We are thinking of each of you!
Kelly
Lately I feel I just can't think straight!
I am sure it's just the stress of upcoming scans but it sure is taking a toll on me. I have been trying to get hours at work but sometimes... it's the little blunders lately! Oh well, trying!
I want to thank everyone for writing in all the well wishes to Tyler!
It's nice having such wonderful and supportive friends and family!
Tyler is doing pretty good.
His first appointment back won't be till the 15th and ECP again the week of xmas.
His eyes,skin and mouth are looking better so maybe the ECP is working. He is having an issue with cramps in his calf off and on. He is trying stretching to relieve it. Probably the steroids.
I have talked to a Grandma of a young man who had a transplant a few months before Tyler. Unfortunately his GVHD is getting the best of him and he is on life support. Please say a prayer for Allen and his family, it doesn't look good. He has been in pain and hasn't walked for a long time.
I also talked to a friend and a little girl who was being treated for ALL when Tyler was being treated has relapsed and will need a transplant.We're praying for you Vesta! I don't know for sure but I think she is 5 or 6 now.
Also Eric, praying for a successful 2nd transplant
Adrienne hoping they will be able to pin point the pain and find a new trial for you
Noah hoping transplant will not be too far off
Also prayers for all our cancer warriors as they courageously fight their battles! We are thinking of each of you!
Kelly
Sunday, November 16, 2008
Anime/Halloween Costume
Tyler's Anime Costume
OK kids, Here's Tyler's Anime/Halloween costume and his pride!
He has been collecting pieces here and there.
The whole costume made him weigh an extra 30 to 40 pounds!
He wore it up on 7 Mott on halloween and to ECP.
On the out to the car we were stopped by security and wanted to know if he was a patient and if he had hospital I.D.
Funny thing is we were leaving (going towards parking elevators)after being there for 5-6 hours!
Oh well I told Ty I think he just wanted to see his costume! But we got a laugh out of it.
If you like it let Tyler know I am sure it'll really pick up his spirits reading peoples comments!Thanks
Kelly
OK kids, Here's Tyler's Anime/Halloween costume and his pride!
He has been collecting pieces here and there.
The whole costume made him weigh an extra 30 to 40 pounds!
He wore it up on 7 Mott on halloween and to ECP.
On the out to the car we were stopped by security and wanted to know if he was a patient and if he had hospital I.D.
Funny thing is we were leaving (going towards parking elevators)after being there for 5-6 hours!
Oh well I told Ty I think he just wanted to see his costume! But we got a laugh out of it.
If you like it let Tyler know I am sure it'll really pick up his spirits reading peoples comments!Thanks
Kelly
Another Day
Another Day
Posted Nov 14, 2008 1:00pm
Well, yes today was another day!!!Tyler had ECP today again but it didn't go as well.
We had Eileen again today but getting hooked up wasn't as easy.
She tried several veins and even asked someone else to try but it just had to be difficult.
Tyler said it hurt a couple of times but nowhere near as bad as before.
When she finally found a vein she could access it wouldn't draw blood!
So they covered his arm with a warm blanket to try to get the vein expanded and it did finally work.She could only get one cycle done by 11:30am (they started at 8:00am) and usually do three cycles. She said his blood was thick(?) and wasn't flowing very well.
She also said it probably would have been 4:30 or 5:00pm before they would of gotten three cycles in! Who knows always something.
But he did get a treatment of some anyways and Tyler wasn't complaining about leaving early.
Posted Nov 14, 2008 1:00pm
Well, yes today was another day!!!Tyler had ECP today again but it didn't go as well.
We had Eileen again today but getting hooked up wasn't as easy.
She tried several veins and even asked someone else to try but it just had to be difficult.
Tyler said it hurt a couple of times but nowhere near as bad as before.
When she finally found a vein she could access it wouldn't draw blood!
So they covered his arm with a warm blanket to try to get the vein expanded and it did finally work.She could only get one cycle done by 11:30am (they started at 8:00am) and usually do three cycles. She said his blood was thick(?) and wasn't flowing very well.
She also said it probably would have been 4:30 or 5:00pm before they would of gotten three cycles in! Who knows always something.
But he did get a treatment of some anyways and Tyler wasn't complaining about leaving early.
Thursday, November 13, 2008
Half way good day
Today was a half way good day today!
Tyler wasn't in the greatest mood, about 15 min before we got to U of M.
I swear that kids whole personality changes (for the worst) when it's a hospital day. Issues with inserting the IV for ECP doesn't help the mood!
We started out at blood draw at 10:30am. Anything I suggested wasn't what he was going to do, but we got through it.
Then we went to clinic. We had a new young doctor helping out the BMT doctors, Dr Andrew Harris. We met him on Halloween when we stopped up on 7Mott (in costume). He is very nice and funny! He grew up here in Ohio not to far from us. He gave Tyler a complete work over, checking muscles and coordination etc. He and Tyler talked Ohayocon ( anime convention in Jan) and Boon Dock Saints movie. They had a lot to talk about. We also seen Dr Kitko. It's been awhile since we got to see her. She thought everything looked pretty good and they also said his counts (the ones that were in) all looked really good.
Then they figured he should get a flu shot. What a look I got from Ty. But he went through with it, but wasn't happy about it.
On our way out Tyler discovered his lap top power cord wasn't in his bag soooo... we ran back to blood draw and up to clinic to see if it had fallen out there. Needless to say it wasn't either place. So another bad attitude, he's sure somehow it was my fault, he was still working on why ( reasons were pretty bad). I'm sure I didn't help because he was fiddling around with stuff in blood draw that he didn't have time to do and my suggestions went on deaf ears, so it kind of ticked me off. We were running around looking for this cord, plus dealing with attitude... and we were a little late for ECP. Oh by the way, later we dicovered the cord was left at home because he forgot to pack it when we had told him to make sure to get around because we were going to leave... oh well.
Today we had Eileen for ECP and she got a vein right away! YAY Eileen!!!! Everything went real well there and that helped his mood somewhat except for the fact he couldn't use his laptop because the battery lost its charge right away.
Once we left up there about 5:15pm he was in a better mood, we weren't. My hubbie forgot to get the parking pass validated so it cost us $6 for parkig!!!!
Oh well, tomorrow is another day!!
By the way we talked to a really nice family again today at ECP. Chris and Frank's daughter Laura had anaplastic anemia and had a transplant. She had 2/six month long stays at the hospital ( other stays also just not as long), 3 week stint in PICU and cGVHD and has done 200 treatments in ECP!!!! Poor kid has been going through so much, her mother told me it has been 10 years of all this! I had a very nice time talking to Chris today, we have more in common than what I thought!
Throw some extra prayers their way.
I am going to try to put some pics of Tyler's costume on today or tomorrow. It's pretty good!
Thanks for checking in
Kelly
Tyler wasn't in the greatest mood, about 15 min before we got to U of M.
I swear that kids whole personality changes (for the worst) when it's a hospital day. Issues with inserting the IV for ECP doesn't help the mood!
We started out at blood draw at 10:30am. Anything I suggested wasn't what he was going to do, but we got through it.
Then we went to clinic. We had a new young doctor helping out the BMT doctors, Dr Andrew Harris. We met him on Halloween when we stopped up on 7Mott (in costume). He is very nice and funny! He grew up here in Ohio not to far from us. He gave Tyler a complete work over, checking muscles and coordination etc. He and Tyler talked Ohayocon ( anime convention in Jan) and Boon Dock Saints movie. They had a lot to talk about. We also seen Dr Kitko. It's been awhile since we got to see her. She thought everything looked pretty good and they also said his counts (the ones that were in) all looked really good.
Then they figured he should get a flu shot. What a look I got from Ty. But he went through with it, but wasn't happy about it.
On our way out Tyler discovered his lap top power cord wasn't in his bag soooo... we ran back to blood draw and up to clinic to see if it had fallen out there. Needless to say it wasn't either place. So another bad attitude, he's sure somehow it was my fault, he was still working on why ( reasons were pretty bad). I'm sure I didn't help because he was fiddling around with stuff in blood draw that he didn't have time to do and my suggestions went on deaf ears, so it kind of ticked me off. We were running around looking for this cord, plus dealing with attitude... and we were a little late for ECP. Oh by the way, later we dicovered the cord was left at home because he forgot to pack it when we had told him to make sure to get around because we were going to leave... oh well.
Today we had Eileen for ECP and she got a vein right away! YAY Eileen!!!! Everything went real well there and that helped his mood somewhat except for the fact he couldn't use his laptop because the battery lost its charge right away.
Once we left up there about 5:15pm he was in a better mood, we weren't. My hubbie forgot to get the parking pass validated so it cost us $6 for parkig!!!!
Oh well, tomorrow is another day!!
By the way we talked to a really nice family again today at ECP. Chris and Frank's daughter Laura had anaplastic anemia and had a transplant. She had 2/six month long stays at the hospital ( other stays also just not as long), 3 week stint in PICU and cGVHD and has done 200 treatments in ECP!!!! Poor kid has been going through so much, her mother told me it has been 10 years of all this! I had a very nice time talking to Chris today, we have more in common than what I thought!
Throw some extra prayers their way.
I am going to try to put some pics of Tyler's costume on today or tomorrow. It's pretty good!
Thanks for checking in
Kelly
Wednesday, November 5, 2008
Tuesday, November 4, 2008
Cancer's Angels
This video is so heartbreaking! To see all the Angels that cancer has taken away from us.
I have known several of these beautiful faces from carepages and caringbridge. I just thought I'd share with you. We need a cure!
http://www.onetruemedia.com/otm_site/view_shared?p=7482ab8599a71f7777881b&skin_id=601&utm_source=otm&utm_medium=text_url
I have known several of these beautiful faces from carepages and caringbridge. I just thought I'd share with you. We need a cure!
http://www.onetruemedia.com/otm_site/view_shared?p=7482ab8599a71f7777881b&skin_id=601&utm_source=otm&utm_medium=text_url
Thursday, October 30, 2008
Another Day
Well I'm sure I didn't make any friends today.
TY had ECP today and we had the same nurse so... I told her that it was too hard on Tyler (and he has been through too much in 3 years) to poke and jab to get a vein and if it wasn't able to get it the first time she had to let some one else try.
I was very nice about it , at first, and of course she didn't have any problems before?! Well there were alot of excuses etc etc etc.
I won't go into all the details but I'm sure I offended someone, it wasn't my intensions, but, doggone it I had to say something.
She did end up getting it in, we did switch off nurses, and Tyler compromised on where they could try to put it in with retrictions. I told them that we might have to talk to the doctor to see if she could come up with someone that may have a easier time with Tyler's veins.
Of course it was because Tyler's veins have been so overly used(?).
It isn't because of blood draws or ECP,but that is pretty much all they have used his veins for and they could get them in the beggining.
But anyways, I'm not there to make them happy, I'm there for Tyler.
He was getting so stressed out! The look he kept giving me. I felt so guilty!
In the end they said they understood, but then asked me if Tyler was on any anti-depressents? You know he doesn't need to be drugged out just so they can get his IV in!!
I'm sure he is depressed sometimes, I would be too! He does talk to us about things that are bothering him, does things with his friends, goes to school, tells us about his day and when things aren't going right. When he walks in the door of the hospital his mood does change completely. Do you Blame him!!!
We got through ECP after all that, last week he also got the Ivig infusion and that went fine too (oh and they didn't have to dig for the vein). Everyone was very nice down there. His nurse was very good! We also seen his main BMT nurse Teresa! And he didn't want one but Sara, who is a message therapist gave me a wonderful message (shoulders and neck). I think she could tell I really needed one! She is so sweet!
His blood counts were evening out last week and this week they look much better!
calcium is back up
AST - 22
ALT - 50
LDH - 331 a little high
ANC - 7.1
WBC - 10.3
HGB - 13.6
HCT - 39.1
PLT - 151
So far going pretty good! Oh he has another ECP tomorrow. We'll see how it goes. I like them as people, they can be very nice even nurse "jab" just sometimes some don't feel they have to listen to the patient, and have a hard time believing that maybe there not in the right.
Tyler is planning on wearing a costume tomorrow up there. I will try to post pictures.
Thanks for listening
And put a prayer in for our new friend Noah and mom Diane.
We met them last week. Noah has been through a lot, he's a cute kid!
Kelly
TY had ECP today and we had the same nurse so... I told her that it was too hard on Tyler (and he has been through too much in 3 years) to poke and jab to get a vein and if it wasn't able to get it the first time she had to let some one else try.
I was very nice about it , at first, and of course she didn't have any problems before?! Well there were alot of excuses etc etc etc.
I won't go into all the details but I'm sure I offended someone, it wasn't my intensions, but, doggone it I had to say something.
She did end up getting it in, we did switch off nurses, and Tyler compromised on where they could try to put it in with retrictions. I told them that we might have to talk to the doctor to see if she could come up with someone that may have a easier time with Tyler's veins.
Of course it was because Tyler's veins have been so overly used(?).
It isn't because of blood draws or ECP,but that is pretty much all they have used his veins for and they could get them in the beggining.
But anyways, I'm not there to make them happy, I'm there for Tyler.
He was getting so stressed out! The look he kept giving me. I felt so guilty!
In the end they said they understood, but then asked me if Tyler was on any anti-depressents? You know he doesn't need to be drugged out just so they can get his IV in!!
I'm sure he is depressed sometimes, I would be too! He does talk to us about things that are bothering him, does things with his friends, goes to school, tells us about his day and when things aren't going right. When he walks in the door of the hospital his mood does change completely. Do you Blame him!!!
We got through ECP after all that, last week he also got the Ivig infusion and that went fine too (oh and they didn't have to dig for the vein). Everyone was very nice down there. His nurse was very good! We also seen his main BMT nurse Teresa! And he didn't want one but Sara, who is a message therapist gave me a wonderful message (shoulders and neck). I think she could tell I really needed one! She is so sweet!
His blood counts were evening out last week and this week they look much better!
calcium is back up
AST - 22
ALT - 50
LDH - 331 a little high
ANC - 7.1
WBC - 10.3
HGB - 13.6
HCT - 39.1
PLT - 151
So far going pretty good! Oh he has another ECP tomorrow. We'll see how it goes. I like them as people, they can be very nice even nurse "jab" just sometimes some don't feel they have to listen to the patient, and have a hard time believing that maybe there not in the right.
Tyler is planning on wearing a costume tomorrow up there. I will try to post pictures.
Thanks for listening
And put a prayer in for our new friend Noah and mom Diane.
We met them last week. Noah has been through a lot, he's a cute kid!
Kelly
Thursday, October 16, 2008
Fun, Fun, FUN!!!
Hi all
I thought I would update after all appointments this week.We started the week Monday at UM with ECP Photopheresis. The nurse had some difficulty getting a vein and ended up giving Ty a nice bruise but other than that it went fine.
Tuesday he had an eye appointment at Kellogg eye center. Ty's eyes are very dry but his vision is still very good. The doc said to continue with the restasis eye drops but to schedule regular eye drops in through out the day at least four times a day. She also told us to watch for other issues being they are starting to wean on the steroids.
Today he had a BMT clinic appointment and ECP. His Immunoglobuling is low (325) which are basically his immunities, ability to fight off infections and viruses. Next Thursday he is going to be infused with Ivig which takes about 6 hours. Needless to say, Tyler was not happy about it! But they have been watching it and it has been going down. They say that's not unusual after a transplant. They were surprised when we said Tyler has never had it before. After three years of treatments and two stem cell transplants the most he has to be infused with is one thing of blood and that is it! He is not the usual transplant patient.He is also having a slight issue with his glucose level. It was the most it has ever been, 238 (the most we have seen is like 140). Steroids can cause diabetes so here is another thing they are going to keep an eye on!Tyler wasn't thrilled with this news either. He was rather grouchy at our visit. I think the stress just starts getting to him!
The rest of his counts were:
Calcium a little low (unusual)
Protein a little low
ALT 55
AST 17
LDH 321
WBC 11.5
HGB 14.6
ANC 9.9
Also they cut his steroids down again 64mg evey other day.
So then off we went to ECP and had a little issue with getting the IV started. She continued to poke and prod into his arm and I had to step in also because she was so determined to show she could get it in, she really made it miserable for him! The other nurse kept saying she could get it in the other arm,but to no avail she wouldn't listen to her. Then she put it inside his fore arm which continuously hurt him and we told her it had to come out! GEES!!! Don't get me wrong she is a nice enough person but.... I think we will just not let her do it anymore! Two times (days)is enough!!! So anyways he got his ECP and they had to watch his BP because it tends to run low and it did get to 93/52. That same nurse insisted he needed a big kit instead of the small, don't know why because it still took as long as before and they still had to watch because of his BP! I still don't see the benefit and I don't think I was the only one who thought that way!
Around 6-6:30pm we were on the road for home. Another LOOONG DAY about 10 1/2 hours including drive time!
Well thanks for checking in! We appreciate the prayers!
Please keep all our cancer friends in your prayers!
Including:
Nicker (wilms) praying for NED
Carly getting through her treatments
Nick B had a hard day at UM the other day
Allen with his cGVHD and has been in the hospital alot
Chelsea I hope scans come back NED
Evan just starting with cGVHD
and all our UM,Toledo Childrens, LLS board,caring bridge, carepages and Web magic board friends who are all fighting their battles so bravely!
It's so sad there are so many!
And to Babyhope who earned her angel wings may her family find peace!
Kelly
I thought I would update after all appointments this week.We started the week Monday at UM with ECP Photopheresis. The nurse had some difficulty getting a vein and ended up giving Ty a nice bruise but other than that it went fine.
Tuesday he had an eye appointment at Kellogg eye center. Ty's eyes are very dry but his vision is still very good. The doc said to continue with the restasis eye drops but to schedule regular eye drops in through out the day at least four times a day. She also told us to watch for other issues being they are starting to wean on the steroids.
Today he had a BMT clinic appointment and ECP. His Immunoglobuling is low (325) which are basically his immunities, ability to fight off infections and viruses. Next Thursday he is going to be infused with Ivig which takes about 6 hours. Needless to say, Tyler was not happy about it! But they have been watching it and it has been going down. They say that's not unusual after a transplant. They were surprised when we said Tyler has never had it before. After three years of treatments and two stem cell transplants the most he has to be infused with is one thing of blood and that is it! He is not the usual transplant patient.He is also having a slight issue with his glucose level. It was the most it has ever been, 238 (the most we have seen is like 140). Steroids can cause diabetes so here is another thing they are going to keep an eye on!Tyler wasn't thrilled with this news either. He was rather grouchy at our visit. I think the stress just starts getting to him!
The rest of his counts were:
Calcium a little low (unusual)
Protein a little low
ALT 55
AST 17
LDH 321
WBC 11.5
HGB 14.6
ANC 9.9
Also they cut his steroids down again 64mg evey other day.
So then off we went to ECP and had a little issue with getting the IV started. She continued to poke and prod into his arm and I had to step in also because she was so determined to show she could get it in, she really made it miserable for him! The other nurse kept saying she could get it in the other arm,but to no avail she wouldn't listen to her. Then she put it inside his fore arm which continuously hurt him and we told her it had to come out! GEES!!! Don't get me wrong she is a nice enough person but.... I think we will just not let her do it anymore! Two times (days)is enough!!! So anyways he got his ECP and they had to watch his BP because it tends to run low and it did get to 93/52. That same nurse insisted he needed a big kit instead of the small, don't know why because it still took as long as before and they still had to watch because of his BP! I still don't see the benefit and I don't think I was the only one who thought that way!
Around 6-6:30pm we were on the road for home. Another LOOONG DAY about 10 1/2 hours including drive time!
Well thanks for checking in! We appreciate the prayers!
Please keep all our cancer friends in your prayers!
Including:
Nicker (wilms) praying for NED
Carly getting through her treatments
Nick B had a hard day at UM the other day
Allen with his cGVHD and has been in the hospital alot
Chelsea I hope scans come back NED
Evan just starting with cGVHD
and all our UM,Toledo Childrens, LLS board,caring bridge, carepages and Web magic board friends who are all fighting their battles so bravely!
It's so sad there are so many!
And to Babyhope who earned her angel wings may her family find peace!
Kelly
Friday, October 10, 2008
Saturday, October 4, 2008
LOOOOONG DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
LOOOONG DAY!!!!!
Well we were up and going this morning to get to University of Michigan for clinic appointment and ECP.Clinic went well. Tyler's CBC were pretty good,
WBC 14.7
PLT 136
HGB 15.4
ANC 12.7
ALT 45
AST 15
LDH 249
His cGVHD looks pretty good, a little red on his arms and eyes still dry.Mouth is still patchy also, but all in all not too bad! Dr Choi brought his steroids down a little again and thinks he is doing good!Then we went to ECP. Tyler is an unusual kid, normally BMT patients don't have such a high Hematocrit (which isn't a bad thing) plus his size, he should be able to do a "big kit". Because his blood pressure run low they have to do a "small kit". The problem is that because of all the red cells in the Hematocrit, they tend to spill over when trying to collect white cells. So basically it takes longer to do the "photo" part of the treatment. OH Well, about 5-6 hours later we were done and on the road for home at about 6:30pm tonight! But everything went well, he's a little tired out and not thrilled to be up there that long but.... is our glass half full or half empty?!!!
We are very blessed that through all this Tyler is still doing pretty well. It could be much worse!
We are also blessed with such good people around us! A big THANK-YOU goes out to Eastwood High School class of 2008 for the gas card for three hundred dollars!! THANKS! It sure comes in handy with all the trips to Ann Arbor!
Also an update on Ryan, his knee is doing well.
Thanks for the prayers and support
Throw a few more in for all our friends battling this awful disease!
Kelly
Well we were up and going this morning to get to University of Michigan for clinic appointment and ECP.Clinic went well. Tyler's CBC were pretty good,
WBC 14.7
PLT 136
HGB 15.4
ANC 12.7
ALT 45
AST 15
LDH 249
His cGVHD looks pretty good, a little red on his arms and eyes still dry.Mouth is still patchy also, but all in all not too bad! Dr Choi brought his steroids down a little again and thinks he is doing good!Then we went to ECP. Tyler is an unusual kid, normally BMT patients don't have such a high Hematocrit (which isn't a bad thing) plus his size, he should be able to do a "big kit". Because his blood pressure run low they have to do a "small kit". The problem is that because of all the red cells in the Hematocrit, they tend to spill over when trying to collect white cells. So basically it takes longer to do the "photo" part of the treatment. OH Well, about 5-6 hours later we were done and on the road for home at about 6:30pm tonight! But everything went well, he's a little tired out and not thrilled to be up there that long but.... is our glass half full or half empty?!!!
We are very blessed that through all this Tyler is still doing pretty well. It could be much worse!
We are also blessed with such good people around us! A big THANK-YOU goes out to Eastwood High School class of 2008 for the gas card for three hundred dollars!! THANKS! It sure comes in handy with all the trips to Ann Arbor!
Also an update on Ryan, his knee is doing well.
Thanks for the prayers and support
Throw a few more in for all our friends battling this awful disease!
Kelly
Friday, September 19, 2008
More info
We found out more info on echo: Injection fraction is 63% and Shortening fraction is 45%.
In other words he still has a NORMAL heart!!
http://www.acor.org/ped-onc/survivors/cardio/cardiotests.html
Tyler also started ECP Photopheresis today and he said it was a breeze! Hopefully it will do it's job against GVHD. I asked what an "average" length of time would be for doing ECP and I was told an average could be 18 months to 2 years! But... it might start at every 2 weeks then eventually be changed to 3 weeks, 4 weeks,once a month, every other month. It also could be a shorter time or longer just depends.
Also blood work looked good
Alt on it's way back down
WBC a little high (caused by gvhd we think) but not too bad
Platelets a little low but not bad
Over all another good day!!
Love to all
Kelly
In other words he still has a NORMAL heart!!
http://www.acor.org/ped-onc/survivors/cardio/cardiotests.html
Tyler also started ECP Photopheresis today and he said it was a breeze! Hopefully it will do it's job against GVHD. I asked what an "average" length of time would be for doing ECP and I was told an average could be 18 months to 2 years! But... it might start at every 2 weeks then eventually be changed to 3 weeks, 4 weeks,once a month, every other month. It also could be a shorter time or longer just depends.
Also blood work looked good
Alt on it's way back down
WBC a little high (caused by gvhd we think) but not too bad
Platelets a little low but not bad
Over all another good day!!
Love to all
Kelly
Wednesday, September 17, 2008
Woo Hoo!!!
We got a call from Dr Stein, she said PET CT Scan looked good!
NO SIGN OF RELAPSE!!!!
He's only 6 months out but I was very worried this time!! Don't know why but a feeling that we needed to get over this hump!
Heart Echo was good(45%?)don't understand the number but we were told it was good,down a little, but good.
Pulmonary Function test, not back yet but the tech thought it was down just a little from March but still normal range.
We go to University of Michigan tomorrow and I'm sure they will explain more.I was at work when Dr Stein called so I couldn't ask everything I want to know.Also tomorrow we start ECP Photopheresis. Here is a web site that kind of tells about it.
http://www.photopheresis.com/patients/index.jsp
This one below goes into a little more detail look under general background pages 1,2 and GVHD page 5
http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0320_coveragepositioncriteria_photopheresis_extracorporeal_photochemo.pdf
Thanks everyone for the prayers!!
Kelly
NO SIGN OF RELAPSE!!!!
He's only 6 months out but I was very worried this time!! Don't know why but a feeling that we needed to get over this hump!
Heart Echo was good(45%?)don't understand the number but we were told it was good,down a little, but good.
Pulmonary Function test, not back yet but the tech thought it was down just a little from March but still normal range.
We go to University of Michigan tomorrow and I'm sure they will explain more.I was at work when Dr Stein called so I couldn't ask everything I want to know.Also tomorrow we start ECP Photopheresis. Here is a web site that kind of tells about it.
http://www.photopheresis.com/patients/index.jsp
This one below goes into a little more detail look under general background pages 1,2 and GVHD page 5
http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0320_coveragepositioncriteria_photopheresis_extracorporeal_photochemo.pdf
Thanks everyone for the prayers!!
Kelly
Sunday, September 14, 2008
Bone Marrow Drive
2008 NASCAR Foundation Blood and Marrow Drive
July to October at race tracks nationwide This summer and fall, join with thousands of other race fans to help save lives. Be part of the annual NASCAR Foundation® Blood and Marrow Drive — give blood and join the NMDP Registry as a bone marrow donor. Race tracks nationwide have teamed up with the Hendrick Marrow Program and National Marrow Donor Program (NMDP), The NASCAR Foundation and the Jimmie Johnson Foundation (http://www.jimmiejohnsonfoundation.org/) to save lives.
Life. It's in you.Join the donor Registry and give hope to patients everywhere. To help you save a life, the Nationwide Foundation and the Hendrick Marrow Program are covering costs for volunteers who join at a participating track or online during a special campaign September 7 - 22, 2008.
Join at a race track near you Visit The NASCAR Foundation to find participating tracks: http://foundation.nascar.com/NetCommunity/Page.aspx?&pid=201&srcid=183
Can't make it to a track? Join the NMDP Registry for free here September 7 - 22
Join online now.
http://www.marrow.org/ABOUT/Your_Contributions/Hendrick_Marrow_Program/index.html
July to October at race tracks nationwide This summer and fall, join with thousands of other race fans to help save lives. Be part of the annual NASCAR Foundation® Blood and Marrow Drive — give blood and join the NMDP Registry as a bone marrow donor. Race tracks nationwide have teamed up with the Hendrick Marrow Program and National Marrow Donor Program (NMDP), The NASCAR Foundation and the Jimmie Johnson Foundation (http://www.jimmiejohnsonfoundation.org/) to save lives.
Life. It's in you.Join the donor Registry and give hope to patients everywhere. To help you save a life, the Nationwide Foundation and the Hendrick Marrow Program are covering costs for volunteers who join at a participating track or online during a special campaign September 7 - 22, 2008.
Join at a race track near you Visit The NASCAR Foundation to find participating tracks: http://foundation.nascar.com/NetCommunity/Page.aspx?&pid=201&srcid=183
Can't make it to a track? Join the NMDP Registry for free here September 7 - 22
Join online now.
http://www.marrow.org/ABOUT/Your_Contributions/Hendrick_Marrow_Program/index.html
Saturday, September 13, 2008
Hi
Ryan , my younger son had his knee surgery Friday and is doing well! He was so funny after they gave him his pre-meds. He said and did such goofy things. The nurses just loved him! He is at a homecoming dance at this moment, beieve it or not! I think he's going to be sore afterwards but what do I know, I'm just mom!
Kelly
Ryan , my younger son had his knee surgery Friday and is doing well! He was so funny after they gave him his pre-meds. He said and did such goofy things. The nurses just loved him! He is at a homecoming dance at this moment, beieve it or not! I think he's going to be sore afterwards but what do I know, I'm just mom!
Kelly
Thursday, September 11, 2008
Scans and photpheresis
Tyler had his appointment at UM today.
This was just a re-check.
His GVHD looks better but still there and his liver enzymes (alt and ast) are elevated enough to put him back on actigal. Also his white blood cells and his glucose is elevated. From what they told us this is probably from the gvhd and some from the steroids he is on. Funny (not really) he went from about three pills twice a day to about ten pills twice a day in about 2-3 weeks.
But he is doing good and we are going to start photopheresis on the 18th. So far he will do this 2x a week every other week until they feel he doesn't need it anymore (if it works or doesn't). The hopes are to get him off steroids before they do damage to his body.
Also PET-CT, PFT, Heart Echo on the 16th. We will post when we find out results.
We're feeling all the love and prayers coming our way!
THANK-YOU
Kelly
This was just a re-check.
His GVHD looks better but still there and his liver enzymes (alt and ast) are elevated enough to put him back on actigal. Also his white blood cells and his glucose is elevated. From what they told us this is probably from the gvhd and some from the steroids he is on. Funny (not really) he went from about three pills twice a day to about ten pills twice a day in about 2-3 weeks.
But he is doing good and we are going to start photopheresis on the 18th. So far he will do this 2x a week every other week until they feel he doesn't need it anymore (if it works or doesn't). The hopes are to get him off steroids before they do damage to his body.
Also PET-CT, PFT, Heart Echo on the 16th. We will post when we find out results.
We're feeling all the love and prayers coming our way!
THANK-YOU
Kelly
Tuesday, September 2, 2008
Another day
Another day at U of M. Appointments went ok. Tyler's GVHD is of concern to the doctors. They are afraid it will get away from them and get into his organs and so forth. They increased his Tacro (anti-rejection) meds to 2.5 mg a day, new steroids Medrol,64mg a day, Flucmazole for fungal infections and another cream for his face. They also would like to start some treatments called ECP Photpheresis. This is where they would take your blood from one side of you, seperate T-cells (part of your white cells that fight infection, cancer etc) expose them to UVA light, and return them to his system. The result is suppose to stimulate the treated cells to attack cells causing disease. Like a vaccination. There is a lot more medical gargan that goes along with it and there are many sessions.Tacro limits the cells, kind of keeps them under control, Steroids kill off cells, thats why they're limiting amount, and this ECP trains cells (basically).
It's all well and fine, but Tyler so strong and so in control, had a breakdown after we left. He would not be happy if he knew I said anything,but I told him it was good to get it out. It's so frustrating for him! He just would like a chance to be a normal kid! Even if he is 19 now, he hasn't had a chance to be just a kid since 10th grade! I am helpless, I can't "make it all better" isn't that what mom's do?! I have always tried to help my kids work thru any problems they had, and I guess that's all I can do! Be there for him. It's just so unfair how these kids have to go through this!
Thanks for listening
Prayers appreciated
Throw in few extras for those fighting this awful disease
Kelly
It's all well and fine, but Tyler so strong and so in control, had a breakdown after we left. He would not be happy if he knew I said anything,but I told him it was good to get it out. It's so frustrating for him! He just would like a chance to be a normal kid! Even if he is 19 now, he hasn't had a chance to be just a kid since 10th grade! I am helpless, I can't "make it all better" isn't that what mom's do?! I have always tried to help my kids work thru any problems they had, and I guess that's all I can do! Be there for him. It's just so unfair how these kids have to go through this!
Thanks for listening
Prayers appreciated
Throw in few extras for those fighting this awful disease
Kelly
Monday, August 25, 2008
YEP it's GVHD
Tyler had an appointment at U of M today and we were not suprised when they told us he has gvhd on his shoulders, arms,back and chest. Possibly some on his face. Of course it is still in his mouth and also in his eyes. Now the trick is to keep it under control! Dr Yanik described it as balancing on a balance beam. Lean too much to the right (no gvhd) hodgkins would probably come back, too much to the left and gvhd could be life threatening, we want him right in the middle!Of course they don't wish for gvhd but they have found that chronic gvhd may ward off lymphoma from returning. We were told that hodgkins can come back, generally in 6 to 12 months, and maybe that is what is going on and maybe that is why this is really kicking in because it see's it as an intruder. Problem is it see's other cells as enemies also.
Anyways he is feeling ok, just some dry mouth,eyes and skin is dark and patchy. He has steroids by mouth and to put on his skin and some to rub on his lips and inside his mouth. They have increased his Tacro (anti-rejection) meds and magnesium. We go back on next Tuesday and they want to check his lungs.
I want to thank everyone for checking in.
I also want to thank all the doctors,nurses,technicians etc,etc,etc, at Toledo,Sylvania and Ann Arbor for always taking good care of Tyler!
Here is a web site that shows some of what gvhd can look like etc.
http://www.marrow.org/PHYSICIAN/Patient_Care_Post_Tx/PDF/QuickRefGuidelines_cGVHD__screening_Part_II.pdf
Kelly
Anyways he is feeling ok, just some dry mouth,eyes and skin is dark and patchy. He has steroids by mouth and to put on his skin and some to rub on his lips and inside his mouth. They have increased his Tacro (anti-rejection) meds and magnesium. We go back on next Tuesday and they want to check his lungs.
I want to thank everyone for checking in.
I also want to thank all the doctors,nurses,technicians etc,etc,etc, at Toledo,Sylvania and Ann Arbor for always taking good care of Tyler!
Here is a web site that shows some of what gvhd can look like etc.
http://www.marrow.org/PHYSICIAN/Patient_Care_Post_Tx/PDF/QuickRefGuidelines_cGVHD__screening_Part_II.pdf
Kelly
Saturday, August 23, 2008
Just an update
Tyler started college and really seems to like it although he said a couple of classes are pretty long. He has four classes, three on M,W and two on F. I think just being able to attend school is something he really missed (Can you believe missing school?!).
We have an appointment on Monday at Ann Arbor (just a check up) but we have noticed his skin getting kind of red and patchy. No real bad reactions to it but just different. We went on marrow.org and it kind of looks like more GVHD. Hopefully this is as bad as it gets and it kicks in that graft verses lymphoma effect!!!!!
We also have an appointment for his younger brother Ryan for his knee. Looks like torn cartilage according to the MRI. The doc said may need surgery. One thing after another.
I also want to take a minute and give thanks for such good friends and family! There are so many of you that I couldn't begin to name you all (I include you all as either friends or family :) or both!!! We are truly blessed for all the caring,love and support.
I want to thank the amazing young man who gave his time and his cells to give Tyler another chance at life! Your are truly a great person!
Please make sure to keep all our young friends in your prayers.
Some extra prayers for our friend Ryan S. who is having a little scare right now. And also for Nicker who is fighting a great fight against wilms, baby carly, Chelsea C, Nick (breakthru) ,Allen who is back in the hospital (he has been in for months).And Tex's mystery (hopefully they will figure it out). Also Evan S who grandma lives where I work, hope all is going well with his transplant!
Congrats to Chelsea for her new Job and starting college!You Go Girl!!
Colleen K congrats on your new school,have a great year and "Don't break anything"!!!
And "HI" to Amy and Megan F, I hope Megan is doing well! CALL ME (Not Saturday mornings, I am at work until 2:00)
Also a big Congrats to Jody Madaras, we're missing ya! Hope the tour is going well!
Love to all
Kelly and Tyler
We have an appointment on Monday at Ann Arbor (just a check up) but we have noticed his skin getting kind of red and patchy. No real bad reactions to it but just different. We went on marrow.org and it kind of looks like more GVHD. Hopefully this is as bad as it gets and it kicks in that graft verses lymphoma effect!!!!!
We also have an appointment for his younger brother Ryan for his knee. Looks like torn cartilage according to the MRI. The doc said may need surgery. One thing after another.
I also want to take a minute and give thanks for such good friends and family! There are so many of you that I couldn't begin to name you all (I include you all as either friends or family :) or both!!! We are truly blessed for all the caring,love and support.
I want to thank the amazing young man who gave his time and his cells to give Tyler another chance at life! Your are truly a great person!
Please make sure to keep all our young friends in your prayers.
Some extra prayers for our friend Ryan S. who is having a little scare right now. And also for Nicker who is fighting a great fight against wilms, baby carly, Chelsea C, Nick (breakthru) ,Allen who is back in the hospital (he has been in for months).And Tex's mystery (hopefully they will figure it out). Also Evan S who grandma lives where I work, hope all is going well with his transplant!
Congrats to Chelsea for her new Job and starting college!You Go Girl!!
Colleen K congrats on your new school,have a great year and "Don't break anything"!!!
And "HI" to Amy and Megan F, I hope Megan is doing well! CALL ME (Not Saturday mornings, I am at work until 2:00)
Also a big Congrats to Jody Madaras, we're missing ya! Hope the tour is going well!
Love to all
Kelly and Tyler
Saturday, August 9, 2008
August 9, 2008
Well we went to University of Michigan. Everything looked pretty good but it looks like Tyler is getting some Graft verses host disease (GVHD). All his blood work up looked good, but inside of his mouth is some whitish bumps that we believe is GVHD. Tyler said he didn't realize it was there except he did feel that his mouth seemed dry.
Right now the doctor gave him some penicillin in case of infection (which they say can happen in liver etc.) and also he is back on Bactrim as long as his counts stay up. As long as his GVHD doesn't get carried away he should be ok. Right now we are on a watch and see how he does. If it starts getting bad he'll be put on steroids and increase his tacro (anti-rejection) and he will be back on stronger restrictions.
We go back on Monday the 25th unless things start getting bad. So far he feels ok.
This Monday he has an appointment with our local college about getting him in and maybe get him into a program with a lesser work load.I know it's going to be difficult getting into the swing of things again for him.
John has alot going on for him this week being I have a full work schedule. Tyler also needs a MRI on his knee for a bump that has been giving him some trouble and Ryan has been in therapy for his knee that he first injured back in the spring. And then the college appointment! CRAZY!!!
Well thanks everyone for checking in
KJC
Right now the doctor gave him some penicillin in case of infection (which they say can happen in liver etc.) and also he is back on Bactrim as long as his counts stay up. As long as his GVHD doesn't get carried away he should be ok. Right now we are on a watch and see how he does. If it starts getting bad he'll be put on steroids and increase his tacro (anti-rejection) and he will be back on stronger restrictions.
We go back on Monday the 25th unless things start getting bad. So far he feels ok.
This Monday he has an appointment with our local college about getting him in and maybe get him into a program with a lesser work load.I know it's going to be difficult getting into the swing of things again for him.
John has alot going on for him this week being I have a full work schedule. Tyler also needs a MRI on his knee for a bump that has been giving him some trouble and Ryan has been in therapy for his knee that he first injured back in the spring. And then the college appointment! CRAZY!!!
Well thanks everyone for checking in
KJC
Saturday, July 26, 2008
RESULTS AND GRADUATION PARTIES
Sorry we haven't posted for a while. We have been sooo busy!!
Well to start all of Tyler's tests ncame out GREAT! PET CT showed no evidence of disease (Hodgkins), Pulmonary function test (lung function) was in high 80's, heart echo was great in fact the BMT doctor said his heart was probably in better shape than all of ours (which is pretty amazing with all that he has been through)! All blood work (including liver panel,platelets, WBC, etc) was all in the normal range!!!
He is now down to just a few pills (hardly any) he takes every day. He looks great!
The new thing is that they want to do a therapeutic regiman of radiation on the area where his disease was. It would be something they really haven't done on a post allo transplant patient (hodgkins). They don't know if it will help or not but they would like to try it on him. We are still in the talking stages, there are different reasons we are not completely sold on the idea, we shall see.
On a lighter note Tyler had two fantastic graduation parties! One in Michigan with my side and one in Ohio with John's side and also with our friends! I want to send out a BIG thank-you to everyone for making both days so special for Tyler!! You will never know how much it means to all of us to have such wonderful,supportive and loving family and friends!!
Will try to keep up on the posts!!
KJC
Well to start all of Tyler's tests ncame out GREAT! PET CT showed no evidence of disease (Hodgkins), Pulmonary function test (lung function) was in high 80's, heart echo was great in fact the BMT doctor said his heart was probably in better shape than all of ours (which is pretty amazing with all that he has been through)! All blood work (including liver panel,platelets, WBC, etc) was all in the normal range!!!
He is now down to just a few pills (hardly any) he takes every day. He looks great!
The new thing is that they want to do a therapeutic regiman of radiation on the area where his disease was. It would be something they really haven't done on a post allo transplant patient (hodgkins). They don't know if it will help or not but they would like to try it on him. We are still in the talking stages, there are different reasons we are not completely sold on the idea, we shall see.
On a lighter note Tyler had two fantastic graduation parties! One in Michigan with my side and one in Ohio with John's side and also with our friends! I want to send out a BIG thank-you to everyone for making both days so special for Tyler!! You will never know how much it means to all of us to have such wonderful,supportive and loving family and friends!!
Will try to keep up on the posts!!
KJC
Tuesday, July 1, 2008
Scans and Tests
Long day at Michigan!!!
Tyler had a PET CT which took almost three hours! They said they were running behind.
Pulmonary Test
Heart Echo
He was suppose to have an eye exam to make sure everything is going well there but because the PET ran late they canceled it. I had made the appointment at 3:45pm but they changed to 11:00am because the doctor had somewhere to go. Oh well, he doesn't seem to be having any vision problems so now the appointment is for July 15th.
Now we wait for the results! Our next appointment is on July 10th, Tyler's Birthday!
Hopefully everything will be great! He feels good and looks fantastic! His hair is coming back in. So far so good!
In between appointments today we noticed our car temperature gage was getting into the red! So John figured out it was a fuse and also the one fan was tied up! What next?!!! It's always something!!! But he has it going again, new fan and all!
Thank you to everyone's thoughts and prayers for Tyler and thanks for checking in!
KJC
Tyler had a PET CT which took almost three hours! They said they were running behind.
Pulmonary Test
Heart Echo
He was suppose to have an eye exam to make sure everything is going well there but because the PET ran late they canceled it. I had made the appointment at 3:45pm but they changed to 11:00am because the doctor had somewhere to go. Oh well, he doesn't seem to be having any vision problems so now the appointment is for July 15th.
Now we wait for the results! Our next appointment is on July 10th, Tyler's Birthday!
Hopefully everything will be great! He feels good and looks fantastic! His hair is coming back in. So far so good!
In between appointments today we noticed our car temperature gage was getting into the red! So John figured out it was a fuse and also the one fan was tied up! What next?!!! It's always something!!! But he has it going again, new fan and all!
Thank you to everyone's thoughts and prayers for Tyler and thanks for checking in!
KJC
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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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
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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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