I miss you so much.
"nobody will ever know the strength of my love for you, after all you're the only one who knows what my heart sounds like from the inside"
Tuesday, February 8, 2011
2 years
Tyler
Hard to believe it has been two years since you were called up to heaven. Sometimes I walk in the room and feel like you will be there. It hasn't gotten easier, we miss you so much. I wonder what you would be doing now. Would you be finishing college, girlfriend, planning your future.
We love you Ty
Hard to believe it has been two years since you were called up to heaven. Sometimes I walk in the room and feel like you will be there. It hasn't gotten easier, we miss you so much. I wonder what you would be doing now. Would you be finishing college, girlfriend, planning your future.
We love you Ty
Thursday, February 25, 2010
Found on another Mom's page. It says it all.
What do we wish others understood about the loss of our child? Here is a partial list of such wishes:
I wish you would not be afraid to speak my child’s name. My child lived and was very important and I need to hear his name. I wish you wouldn’t feel awkward if I mention his name.
If I cry or get emotional if we talk about my child, I wish you knew that it isn’t because you hurt me: the fact that my child died has caused my tears. You have allowed me to cry and I thank you.
Crying and emotional outbursts are healing. I will have emotional highs and lows, ups and downs.
I wish you wouldn’t think that if I have a good day my grief is all over, or if I have a bad day I need psychiatric counseling.
I wish you knew that the death of a child is different from other losses and must be viewed separately. It is the ultimate tragedy and I wish you wouldn’t compare it to the loss of a parent, spouse or pet.
Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I wish you knew that all the “crazy” grief reactions that I am having are in fact very normal. Depression, anger, frustration, hopelessness, the questioning of values and beliefs are to be expected following the death of a child.
I wish you wouldn’t expect my grief to be over in six months. The first few years are going to be exceedingly traumatic for us.
As with alcoholics, I will never be “cured” or a “former bereaved parent,” but will forever be a “recovering bereaved parent.”
I wish you understood the physical reaction to grief. I may gain or lose weight, sleep all the time or not at all, lose my short-term memory, develop a host of illness and be accident prone, all of which may be related to my grief.
Our child’s birthday, the anniversary of his death, and the holidays are terrible times for us. I wish you could tell us that you are thinking about our child these days and if we get quiet and withdrawn, just know that we are thinking about our child and missing him terribly.
Please understand the I am not the same person I was before my child died, and do not expect me to "get back to my old self". I am forever changed, but if you give me a chance, you may find that you like the "new me".
That about sums it up. But I also want to thank all that have been there for us. It means so much.
K
What do we wish others understood about the loss of our child? Here is a partial list of such wishes:
I wish you would not be afraid to speak my child’s name. My child lived and was very important and I need to hear his name. I wish you wouldn’t feel awkward if I mention his name.
If I cry or get emotional if we talk about my child, I wish you knew that it isn’t because you hurt me: the fact that my child died has caused my tears. You have allowed me to cry and I thank you.
Crying and emotional outbursts are healing. I will have emotional highs and lows, ups and downs.
I wish you wouldn’t think that if I have a good day my grief is all over, or if I have a bad day I need psychiatric counseling.
I wish you knew that the death of a child is different from other losses and must be viewed separately. It is the ultimate tragedy and I wish you wouldn’t compare it to the loss of a parent, spouse or pet.
Being a bereaved parent is not contagious, so I wish you wouldn’t shy away from me. I wish you knew that all the “crazy” grief reactions that I am having are in fact very normal. Depression, anger, frustration, hopelessness, the questioning of values and beliefs are to be expected following the death of a child.
I wish you wouldn’t expect my grief to be over in six months. The first few years are going to be exceedingly traumatic for us.
As with alcoholics, I will never be “cured” or a “former bereaved parent,” but will forever be a “recovering bereaved parent.”
I wish you understood the physical reaction to grief. I may gain or lose weight, sleep all the time or not at all, lose my short-term memory, develop a host of illness and be accident prone, all of which may be related to my grief.
Our child’s birthday, the anniversary of his death, and the holidays are terrible times for us. I wish you could tell us that you are thinking about our child these days and if we get quiet and withdrawn, just know that we are thinking about our child and missing him terribly.
Please understand the I am not the same person I was before my child died, and do not expect me to "get back to my old self". I am forever changed, but if you give me a chance, you may find that you like the "new me".
That about sums it up. But I also want to thank all that have been there for us. It means so much.
K
Saturday, February 6, 2010
It's been one year
I can't believe it's been one year since Tyler left us. I still feel at times that I'll walk in the door and he'll be there.
It just stinks that he was doing so well and had been through so much to be taken so suddenly by a pulmonary embolis.
We are still trying to find our way in this new "normal" it's so hard! We all feel like a piece of our heart has been ripped out.
As for now we engulf ourselves in school and work. We want to find something special to honor Ty. We have done LLS "light the night" ACS walk, and written an article for Bone marrow donation drive. Thinking of starting a foundation in his name to help many organizations and a scholarship for kids that maybe in general have a challenging life. Tyler was interested in the scholarship, he asked about it several weeks before he died. Maybe he knew more than we did.
It just stinks that he was doing so well and had been through so much to be taken so suddenly by a pulmonary embolis.
We are still trying to find our way in this new "normal" it's so hard! We all feel like a piece of our heart has been ripped out.
As for now we engulf ourselves in school and work. We want to find something special to honor Ty. We have done LLS "light the night" ACS walk, and written an article for Bone marrow donation drive. Thinking of starting a foundation in his name to help many organizations and a scholarship for kids that maybe in general have a challenging life. Tyler was interested in the scholarship, he asked about it several weeks before he died. Maybe he knew more than we did.
Wednesday, October 7, 2009
Light the Night
http://pages.lightthenight.org/noh/Toledo09/TeamTyler
We are walking in support of so many who are fighting this awful disease in Tyler's memory the way he would want us to. If you would like to support us in any way,walk,donate, it would all be much appreciated. Just go to the link.
Kelly
We are walking in support of so many who are fighting this awful disease in Tyler's memory the way he would want us to. If you would like to support us in any way,walk,donate, it would all be much appreciated. Just go to the link.
Kelly
Saturday, May 30, 2009
Monday, March 30, 2009
Thursday, March 12, 2009
It's been a while since I have updated and I'm still not sure what to say.
It's been pretty tough on all of us since Tyler passed away.
We really had no warning, no idea that this was going on. Tyler never complained about anything or showed any symptoms that anything was wrong. He basically layed down on the floor (the boys thought he was playing with the cat) and he was gone.
We have so many unanswered questions of what may have caused this, I will try to contact his BMT doctor again when I get the coronors report.
I have not heard back from them.
It was such a shock, everything was pointing in the direction of him doing so well. Even the coronor said it is hard to understand why this might have happened in someone as healthy as he was.
Healthy seems so unusual of a word for someone in his shoes, but that goes to say his insides were still in good shape.
It's hard to write, so I am taking baby steps right now. I will write more later.
I do want to thank EVERYONE for all their sympathy, support, love and prayers.
And also for including Tyler in their carepages,caringbridge and blogspot sites. Thanks to everyone at the LLS discussion board and webmagic-hodgkins lymphoma board for all your love and support.
Mrs Blausey you are such a special lady, we love you.
Everyone at the Eastwood schools including his class of 2008, you're all wonderful. All of our FAMILY and FRIENDS, including Troy Twp Fire and EMS have done so much for us, thank you. Amy thanks for being there, I know it was hard.
And Sara thank you for including Tyler's name on your bike ride in Tahoe benefitting LLS. Everyone who has taken such good care of Tyler, Thank you.
To all our cancer warriors keep fighting, you can win this war.
Prayers to all
Kelly
It's been pretty tough on all of us since Tyler passed away.
We really had no warning, no idea that this was going on. Tyler never complained about anything or showed any symptoms that anything was wrong. He basically layed down on the floor (the boys thought he was playing with the cat) and he was gone.
We have so many unanswered questions of what may have caused this, I will try to contact his BMT doctor again when I get the coronors report.
I have not heard back from them.
It was such a shock, everything was pointing in the direction of him doing so well. Even the coronor said it is hard to understand why this might have happened in someone as healthy as he was.
Healthy seems so unusual of a word for someone in his shoes, but that goes to say his insides were still in good shape.
It's hard to write, so I am taking baby steps right now. I will write more later.
I do want to thank EVERYONE for all their sympathy, support, love and prayers.
And also for including Tyler in their carepages,caringbridge and blogspot sites. Thanks to everyone at the LLS discussion board and webmagic-hodgkins lymphoma board for all your love and support.
Mrs Blausey you are such a special lady, we love you.
Everyone at the Eastwood schools including his class of 2008, you're all wonderful. All of our FAMILY and FRIENDS, including Troy Twp Fire and EMS have done so much for us, thank you. Amy thanks for being there, I know it was hard.
And Sara thank you for including Tyler's name on your bike ride in Tahoe benefitting LLS. Everyone who has taken such good care of Tyler, Thank you.
To all our cancer warriors keep fighting, you can win this war.
Prayers to all
Kelly
Sunday, February 15, 2009
Monday, February 9, 2009
We just heard from the coroners office.
Tyler had a pulmonary embolism ( Pulmonary embolism is the sudden blockage of a major blood vessel (artery) in the lung, usually by a blood clot. In most cases, the clots are small and are not deadly, but they can damage the lung. But if the clot is large and stops blood flow to the lung)
His death was instant,no symptoms, the coroner said sometimes they just develop.
He also said their was no evidence of disease (Hodgkins)
Tyler had a pulmonary embolism ( Pulmonary embolism is the sudden blockage of a major blood vessel (artery) in the lung, usually by a blood clot. In most cases, the clots are small and are not deadly, but they can damage the lung. But if the clot is large and stops blood flow to the lung)
His death was instant,no symptoms, the coroner said sometimes they just develop.
He also said their was no evidence of disease (Hodgkins)
Tyer is in Heaven
After a three year long battle with Hodgkins Lymphoma, Tyler passed away suddenly Saturday night around 6:00pm.
Tyler was always a fighter but couldn't fight what ever took him from us Saturday.
We don't know what took him but it was fast and we don't believe he suffered.
Funeral services will be :
Marsh Funeral Home
Luckey Ohio 43443
419-833-4011
Visitation:
Wednesday February 11th
2:00-4:00
6:00-9:00pm
Funeral:
Thursday February 12th
11:00 am
St Johns Lutheran Church
5520 Fremont Pike (State RT 20)
Stony Ridge Ohio
graveside service following and Beveavement Luncheon following
Online obituary and guest registry www.marshfuneralhomes.com
We really miss him!!
Tyler was always a fighter but couldn't fight what ever took him from us Saturday.
We don't know what took him but it was fast and we don't believe he suffered.
Funeral services will be :
Marsh Funeral Home
Luckey Ohio 43443
419-833-4011
Visitation:
Wednesday February 11th
2:00-4:00
6:00-9:00pm
Funeral:
Thursday February 12th
11:00 am
St Johns Lutheran Church
5520 Fremont Pike (State RT 20)
Stony Ridge Ohio
graveside service following and Beveavement Luncheon following
Online obituary and guest registry www.marshfuneralhomes.com
We really miss him!!
Friday, January 30, 2009
levels
We haven't checked in for a while, things are going pretty good.
The week of christmas while doing ECP, Tyler's immuniglobin dropped into the 200's and the day after christmas he was at UM getting Ivig infusion.
Our friend Jan's grandson passed away on December 27th after battling cGVHD for about a year after an allo transplant. We met his family when Tyler had his transplant. He gave it a very good fight until his body just gave out. Our thoughts and prayers are with his family.
Last Friday Tyler had an appointment at UM cancer center and for some reason his counts decided to go a little off from two weeks ago.
His Tacro (anti-rejection med) level went high
His platelets droppedThis is his CBC levels we're watching:
------- 01/07/2009 --- --- 01/22/2009
Tacro level ----8.0 --- -- 1.5
Potasium ----5.2 - ----- 5.1
immuniglobin ---- ? --- -- 417
Platelets ----162 --- -- 109
RBC ----- 4.30 --- -- 4.22
WBC ----- 13.6 --- -- 8.6
ALT ----- 49 --- - -- 43
LDH ------ 381 --- - -- 389
ANC ------11.2 --- - --- 6.1
Some levels dropped down and others went up, so they don't know if he was dehydrated or had a virus (a week ago he had diarrhea) so they ordered more tests, including thyroid (he's always so cold).
We also had to get more blood work this week (haven't heard results yet). They dropped his tacro from 1 mg twice a day to .5 mg twice a day (and he had to skip next two doses), dropped his steroid from 48mg every other day to 32mg every other day and stop Bactrim for now.
I have to tell you starting Sunday his eyes started to look red (cGVHD?) his temp on two different thermometers was 94.5f and 94.7f, We were a "little" concerned on breathing.
Monday night at about 7:30pm he proceeds to tell us everything went black on him 3x that day, he didn't pass out but he had to wait for things to come back.
We started to push him to drink more including some powerade, and kept him from school the following day.
No, we didn't call UM because he was still controlled and we kind of thought maybe between being dehydrated and the big drop in meds that could of been the cause.
We even debated on whether or not his skin was starting to look a little red.Wednesday things started looking better and today eyes look alot better, skin doesn't look red at all and no more blackout issues!
Who Knows?!!
I am just glad things are starting to turn back around. He is much better about keeping hydrated (we think that it kind of scared him) and now he realizes how important it is.February 20th is next cliic visit but we're sure he will have to have Ivig before that. That will be his 4th blood product he has received besides stem cells in his three years of fighting this awful disease.
March we start 1 year tests
Please keep all our cancer warriors in your prayers!!
God Bless
Kelly
The week of christmas while doing ECP, Tyler's immuniglobin dropped into the 200's and the day after christmas he was at UM getting Ivig infusion.
Our friend Jan's grandson passed away on December 27th after battling cGVHD for about a year after an allo transplant. We met his family when Tyler had his transplant. He gave it a very good fight until his body just gave out. Our thoughts and prayers are with his family.
Last Friday Tyler had an appointment at UM cancer center and for some reason his counts decided to go a little off from two weeks ago.
His Tacro (anti-rejection med) level went high
His platelets droppedThis is his CBC levels we're watching:
------- 01/07/2009 --- --- 01/22/2009
Tacro level ----8.0 --- -- 1.5
Potasium ----5.2 - ----- 5.1
immuniglobin ---- ? --- -- 417
Platelets ----162 --- -- 109
RBC ----- 4.30 --- -- 4.22
WBC ----- 13.6 --- -- 8.6
ALT ----- 49 --- - -- 43
LDH ------ 381 --- - -- 389
ANC ------11.2 --- - --- 6.1
Some levels dropped down and others went up, so they don't know if he was dehydrated or had a virus (a week ago he had diarrhea) so they ordered more tests, including thyroid (he's always so cold).
We also had to get more blood work this week (haven't heard results yet). They dropped his tacro from 1 mg twice a day to .5 mg twice a day (and he had to skip next two doses), dropped his steroid from 48mg every other day to 32mg every other day and stop Bactrim for now.
I have to tell you starting Sunday his eyes started to look red (cGVHD?) his temp on two different thermometers was 94.5f and 94.7f, We were a "little" concerned on breathing.
Monday night at about 7:30pm he proceeds to tell us everything went black on him 3x that day, he didn't pass out but he had to wait for things to come back.
We started to push him to drink more including some powerade, and kept him from school the following day.
No, we didn't call UM because he was still controlled and we kind of thought maybe between being dehydrated and the big drop in meds that could of been the cause.
We even debated on whether or not his skin was starting to look a little red.Wednesday things started looking better and today eyes look alot better, skin doesn't look red at all and no more blackout issues!
Who Knows?!!
I am just glad things are starting to turn back around. He is much better about keeping hydrated (we think that it kind of scared him) and now he realizes how important it is.February 20th is next cliic visit but we're sure he will have to have Ivig before that. That will be his 4th blood product he has received besides stem cells in his three years of fighting this awful disease.
March we start 1 year tests
Please keep all our cancer warriors in your prayers!!
God Bless
Kelly
Thursday, December 18, 2008
And the news is...
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
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
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
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