It's been a LONG and emotional week. I had the first "real" transplant consult of several, and it went good. I listened, I asked questions, I kept it together.....then Hilary and I went to 300 east and decompressed as we drank several glasses of wine. Hilary is my sister-in-law, she is married to my step brother. She and I have always gotten along great, but recently (over the past couple of years) we have really connected. She tries so hard to understand what we are going through. She is such a great support.
Speaking of "going through".....I met with Dr. Gilman for about 3hrs last Tuesday. He feels very confident that he can do this very complicated transplant, and be successful. He is not an expert on FA, but his is an expert on GVHD and T-Cell depletion. He is also an expert on Asplastic Anemia unrelated donor transplants. He likes to take more of an European approach and has worked with Dr. Boulard at Sloan Kettering. I didn't feel like it was a sales pitch as I was talking to him, but rather that he was a very caring and confident doctor who wants to save my son.
He has some interesting things to say about haplo-identical matched donors (half match). A lot of things to take in, but all very interesting.
The one thing that really stood out was Will's chance of survival. He has a 70% of survial with a 7/8 donor. That really just doesn't sound all that great to me. Like I said....a lot to take in.
We are going to Cincy next Sunday, and then hopefully NY in about a month. I really need to make a decision as to WHERE, then the WHEN will follow.
I am such a mess right now. I have my support system here, but I really feel so alone. I feel helpless and unsure of the future.
I keep telling myself that God will get me through this, and I know he will......but it's still hard.
Saturday, September 20, 2008
Thursday, September 11, 2008
Still Scared......
Counts seem to be dropping. I have increased his androgen over the past two weeks, and so far there is no response. It may be to soon to really tell, but my heart tells me it's not going to work. There is the option of tying a different androgen....but would it really matter? I don't know.
I am a mess right now. Scared for my son's life. Scared of making the wrong decision. Scared of not being able to provide for him. Scared of not being a good mom. Scared of everything.......
I wish I could just wake up from this nightmare and find that it was all just a dream.......
I am a mess right now. Scared for my son's life. Scared of making the wrong decision. Scared of not being able to provide for him. Scared of not being a good mom. Scared of everything.......
I wish I could just wake up from this nightmare and find that it was all just a dream.......
Wednesday, August 27, 2008
Scared...
I guess there are several words to describe my feeling today. Scared is one of there. There are also, nervous, shocked, surprised, lonely, afraid, sick to my stomach, fearful, powerless, angry and broke.
I got Will's counts this morning and they have dropped a little. Now I know that a little drop is not something I should get very upset over, but we don't usually have a drop, especially in hemoglobin. Since Will in on a androgen to stimulate the hemoglobin I wouldn't expect it to decrease much unless the androgen is beginning to stop working. That is my fear.
My head tells me that I should not worry until there is a "trend", but my heart tells me to cry.....so that is what I am doing......inside and out.
I can't even bring myself to think about that "what ifs". I can't even seem to decide on a transplant center. Something in my heart is telling to check out Sloan. I mean I have already been to the other two and I am also talking to our local doctor.....but I HAVE to go to NY. I had planned on going next August after Camp, but what if.....WHAT IF I don't have enough time.
Time is so precious. I try so hard to enjoy each and every moment. To give my children these wonderful childhood memories to carry with them through life. I love them so much, and I want them to always remember to live in the moment, but before you know it the moment is gone.
So day I will suck it up and remind myself that Will is in good hands.....he is in God's hands. Wow that sounds great doesn't it! Now if only I could figure out how in the heck to give up control and trust God enough to handle him with care. Crazy huh.....me giving up control and trusting God to give us the power and the strenght to get through whatever life hands us.
What is it that Randy Pausch said...."We cannot change the hand we were dealt, just how we play the game". Great Advice!!
Will Power
I got Will's counts this morning and they have dropped a little. Now I know that a little drop is not something I should get very upset over, but we don't usually have a drop, especially in hemoglobin. Since Will in on a androgen to stimulate the hemoglobin I wouldn't expect it to decrease much unless the androgen is beginning to stop working. That is my fear.
My head tells me that I should not worry until there is a "trend", but my heart tells me to cry.....so that is what I am doing......inside and out.
I can't even bring myself to think about that "what ifs". I can't even seem to decide on a transplant center. Something in my heart is telling to check out Sloan. I mean I have already been to the other two and I am also talking to our local doctor.....but I HAVE to go to NY. I had planned on going next August after Camp, but what if.....WHAT IF I don't have enough time.
Time is so precious. I try so hard to enjoy each and every moment. To give my children these wonderful childhood memories to carry with them through life. I love them so much, and I want them to always remember to live in the moment, but before you know it the moment is gone.
So day I will suck it up and remind myself that Will is in good hands.....he is in God's hands. Wow that sounds great doesn't it! Now if only I could figure out how in the heck to give up control and trust God enough to handle him with care. Crazy huh.....me giving up control and trusting God to give us the power and the strenght to get through whatever life hands us.
What is it that Randy Pausch said...."We cannot change the hand we were dealt, just how we play the game". Great Advice!!
Will Power
Monday, August 4, 2008
Powerful Song......
My life,
Has led me down the road that’s so uncertain
And now I am left alone and I am broken,
Trying to find my way, Trying to find the faith that’s gone
This time, I know that you are holding all the answers
I’m tired of losing hope and taking chances,
On roads that never seem, To be the ones that bring me home
Give me a revelation, Show me what to do
Cause I’ve been trying to find my way, I haven’t got a clue
Tell me should I stay here, Or do I need to move
Give me a revelation I’ve got nothing without You
I’ve got nothing without You
My life,
Has led me down this path that’s ever winding
Through every twist and turn I’m always finding,
That I am lost again (I am lost again) Tell me when this road will ever end
Give me a revelation, Show me what to do
Cause I’ve been trying to find my way, I haven’t got a clue
Tell me should I stay here, Or do I need to move
Give me a revelation I’ve got nothing without You
I’ve got nothing without…
I don’t know where I can turn Tell me when will I learn
Won’t You show me where I need to go
Oh oh Let me follow Your lead,
I know that it’s the only way that I can get back home
Give me a revelation, Show me what to do
Cause I’ve been trying to find my way, I haven’t got a clue
Tell me should I stay here, Or do I need to move
Give me a revelation I’ve got nothing without You
I’ve got nothing without You
Oh, give me a revelation… I’ve got nothing without You I’ve got nothing without You
Has led me down the road that’s so uncertain
And now I am left alone and I am broken,
Trying to find my way, Trying to find the faith that’s gone
This time, I know that you are holding all the answers
I’m tired of losing hope and taking chances,
On roads that never seem, To be the ones that bring me home
Give me a revelation, Show me what to do
Cause I’ve been trying to find my way, I haven’t got a clue
Tell me should I stay here, Or do I need to move
Give me a revelation I’ve got nothing without You
I’ve got nothing without You
My life,
Has led me down this path that’s ever winding
Through every twist and turn I’m always finding,
That I am lost again (I am lost again) Tell me when this road will ever end
Give me a revelation, Show me what to do
Cause I’ve been trying to find my way, I haven’t got a clue
Tell me should I stay here, Or do I need to move
Give me a revelation I’ve got nothing without You
I’ve got nothing without…
I don’t know where I can turn Tell me when will I learn
Won’t You show me where I need to go
Oh oh Let me follow Your lead,
I know that it’s the only way that I can get back home
Give me a revelation, Show me what to do
Cause I’ve been trying to find my way, I haven’t got a clue
Tell me should I stay here, Or do I need to move
Give me a revelation I’ve got nothing without You
I’ve got nothing without You
Oh, give me a revelation… I’ve got nothing without You I’ve got nothing without You
Sunday, August 3, 2008
depression - 80/20
Life is so strange sometimes. There are so many ups and downs, and it changes at the drop of a dime. I have been feeling so out of place lately. It's seems like all I do is cry, sleep or worry. I know I have a lot on my plate, but these feelings are not typical. I am so worried about Will. I have this "dark cloud" gloaming overhead and it is getting the best of me. I have this sense that things are not as good as they seem and it really scares me.
When I lost my job in March I also lost the fantastic health insurance that covered me and my kids. I kept COBRA on Will because the insurance I have at my new job absolutely sucks. It has a $50k cap and to a FA patient that is mere pocket change. I can keep Will on COBRA until next August, but the expense is draining not to mention the stress. Never the less, he is covered and that is the main focus.
Okay, but to the sucky insurance....not only does it have a cap it also has a reimbursement of $600 for prescription meds. SIX HUNDRED DOLLARS! My anti-depressant alone is $360 a month, so I made the decision to take myself off of it. I haven't taken in almost two months. I am thinking that is the reason for this depression and for all of this weight gain that is getting out of control.
My whole life feels out of control. I am trying some nature remedies like B6, B12 and St. Johns Wort. I hope it helps. It has to work because I can't take this much longer. Don't get me wrong, I am not a Complete basket case (yet). I can still put on a happy face and pretend that everything is okay (for a short period of time), but then sometimes after I wipe of that "I'm Okay & Life is Great" smile and let it out....it doesn't just come out it's like opening a flood gate!
Funny thing is Will is doing okay. There isn't any bad news to cry about and since he was diagnosed for FA almost 6 years ago, I think it's had time to sink in so that's not the issue either. It's just overwhelming sometimes.
Dr. M asked me what it was that was holding me back from wanting to go to transplant. He said that is his opinion an unrelated mismatched donor FA transplant probably isn't going to get much better than 80%. He also said that he couldn't believe they were as successful as they are. Well if Will had cancer or leukemia or some other disease 80% might be okay, but Will has Fanconi Anemia. By telling me that there is an 80% success rate then my mind immediately goes to that 20%. That TWENTY PERCENT of kids who have names like Robbie, Alex, Coley, Davaan, Kendall, Taylor, Brandon, Henry, Emily, Charlotte, Cole, Cade, Maria, Abbey, Danielle, Taliah, Tom, Jack, Adam.....the list goes on and on. When you can put names and faces to that Twenty Percent, all of the sudden 80% doesn't sound so hot any more. There aren't enough of us to get excited about only a 20% loss because to be honest losing 20% of our FA kids is HUGE!
80/20 is just not good enough!
When I lost my job in March I also lost the fantastic health insurance that covered me and my kids. I kept COBRA on Will because the insurance I have at my new job absolutely sucks. It has a $50k cap and to a FA patient that is mere pocket change. I can keep Will on COBRA until next August, but the expense is draining not to mention the stress. Never the less, he is covered and that is the main focus.
Okay, but to the sucky insurance....not only does it have a cap it also has a reimbursement of $600 for prescription meds. SIX HUNDRED DOLLARS! My anti-depressant alone is $360 a month, so I made the decision to take myself off of it. I haven't taken in almost two months. I am thinking that is the reason for this depression and for all of this weight gain that is getting out of control.
My whole life feels out of control. I am trying some nature remedies like B6, B12 and St. Johns Wort. I hope it helps. It has to work because I can't take this much longer. Don't get me wrong, I am not a Complete basket case (yet). I can still put on a happy face and pretend that everything is okay (for a short period of time), but then sometimes after I wipe of that "I'm Okay & Life is Great" smile and let it out....it doesn't just come out it's like opening a flood gate!
Funny thing is Will is doing okay. There isn't any bad news to cry about and since he was diagnosed for FA almost 6 years ago, I think it's had time to sink in so that's not the issue either. It's just overwhelming sometimes.
Dr. M asked me what it was that was holding me back from wanting to go to transplant. He said that is his opinion an unrelated mismatched donor FA transplant probably isn't going to get much better than 80%. He also said that he couldn't believe they were as successful as they are. Well if Will had cancer or leukemia or some other disease 80% might be okay, but Will has Fanconi Anemia. By telling me that there is an 80% success rate then my mind immediately goes to that 20%. That TWENTY PERCENT of kids who have names like Robbie, Alex, Coley, Davaan, Kendall, Taylor, Brandon, Henry, Emily, Charlotte, Cole, Cade, Maria, Abbey, Danielle, Taliah, Tom, Jack, Adam.....the list goes on and on. When you can put names and faces to that Twenty Percent, all of the sudden 80% doesn't sound so hot any more. There aren't enough of us to get excited about only a 20% loss because to be honest losing 20% of our FA kids is HUGE!
80/20 is just not good enough!
Tuesday, July 29, 2008
Tears....
This has certainly been a week of tears! I just finished watching Primetime. It was a tribute to Randy Pausch and his life. What an incredible man. I first watched his "Last Lecture" a few months ago. I was touched so much. This man who was dying, standing on stage talking about life and living it! I have done nothing tonight but cry as I watched him live out the final months of his life, with his loving wife and children.
He said something about how it's not the hand your dealt, but how you play it. What a great outlook. I wish I could be more like him and find that positive attitude that some say I am known for. It's just not there right now, but I know it's in there somewhere.
If you were to look at my house it is a mess. It has been for quite some time now. I don't have any desire to clean it up. I don't have a desire to workout, to go anywhere or to do anything. I am just "blah" right now.
To be really honest, I have stopped taking my antidepressant medicine. It's been about a month in a half and I wonder if that has anything to do with it. I never really thought I needed it, but now I wonder. I stopped taking it because this crappy insurance I have at work won't cover it and it's over $300 a month. I know that may not be a good reason to some, but for someone who literally lives paycheck to paycheck that's the best I can do. Hopefully I will level out at things will get back to normal (whatever that is).
We are heading to Cincinnati on Thursday. Will has appointments on Friday and then back home on Saturday. It's busy, and it doesn't help being out of work (no PTO), but we need to be there so we're going. Camp Sunshine is next week, which is another 3 days out of work. Sorry if I am harping on money, but that is a big issue right now.
Will seems to be feeling okay. He had two nose bleeds two days in a row. That really concerns me. It seems to happen when he is swimming for some reason. Other than that he is doing good.
I hope to get the book "The Last Lecture" soon. I hope maybe it will help me get back on track, not only for my sake but for Will's too.
He said something about how it's not the hand your dealt, but how you play it. What a great outlook. I wish I could be more like him and find that positive attitude that some say I am known for. It's just not there right now, but I know it's in there somewhere.
If you were to look at my house it is a mess. It has been for quite some time now. I don't have any desire to clean it up. I don't have a desire to workout, to go anywhere or to do anything. I am just "blah" right now.
To be really honest, I have stopped taking my antidepressant medicine. It's been about a month in a half and I wonder if that has anything to do with it. I never really thought I needed it, but now I wonder. I stopped taking it because this crappy insurance I have at work won't cover it and it's over $300 a month. I know that may not be a good reason to some, but for someone who literally lives paycheck to paycheck that's the best I can do. Hopefully I will level out at things will get back to normal (whatever that is).
We are heading to Cincinnati on Thursday. Will has appointments on Friday and then back home on Saturday. It's busy, and it doesn't help being out of work (no PTO), but we need to be there so we're going. Camp Sunshine is next week, which is another 3 days out of work. Sorry if I am harping on money, but that is a big issue right now.
Will seems to be feeling okay. He had two nose bleeds two days in a row. That really concerns me. It seems to happen when he is swimming for some reason. Other than that he is doing good.
I hope to get the book "The Last Lecture" soon. I hope maybe it will help me get back on track, not only for my sake but for Will's too.
Saturday, July 26, 2008
Happy Birthday Mother!
WOW! Today would have been your 69th Birthday! Had you still been here I am sure we would have celebrated in style! I am also sure that I would have teased you about being so old, knowing that you were just a beautiful as ever! I bet you would have you a new boyfriend (or husband) and we would all go out to dinner tonight and then out to a bar somewhere for dancing and cocktails....and more dancing! I remember when you won that dance contest at Country City U.S.A! You loved to dance!!!
I miss you mom. I need you so much and even after 17 years it hurts sometimes. Some days are harder than others, and today is one of the hardest I have had in awhile. I am so scared of what is happening to my baby and I wish you could just wrap your arms around me and tell me it is all going to be okay. Will is doing okay, but this terrible disease is so unpredictable. Fanconi Anemia has changed our lives, and it is my biggest fear. I wish I knew what to do, when to do it, where to do and that all of my decisions would be the right ones.
I wish so much you were here to go through this with me. I feel so alone. I have friends, but I don't think they really understand...they try. I have my FAmily, I don't know what I would do without them. We are getting ready for our annual family reunion, otherwise know as the Fanconi Anemia Family Meeting. It's at Camp Sunshine in Maine. Boy I know you would like there! You would fit right in and there is no doubt that you would be there, right by my side, supporting me all the way.
You know so often I hear "God doesn't give you more than you can handle" and I have to say that is a the stupidest comment I have ever heard! I somestimes can't handle it Mother. I sometimes wonder "why" do we have to go through all this BS and why are you not here to help me! It's hard.
I know you are in a much better place and I know that your spirit is always here with me. You are in my heart!
Happy Birthday Mother! I will thinking of you today and I will find a way to smile because I know you are cancer free and free from all the worries of this world we live in.
I love you!
I miss you mom. I need you so much and even after 17 years it hurts sometimes. Some days are harder than others, and today is one of the hardest I have had in awhile. I am so scared of what is happening to my baby and I wish you could just wrap your arms around me and tell me it is all going to be okay. Will is doing okay, but this terrible disease is so unpredictable. Fanconi Anemia has changed our lives, and it is my biggest fear. I wish I knew what to do, when to do it, where to do and that all of my decisions would be the right ones.
I wish so much you were here to go through this with me. I feel so alone. I have friends, but I don't think they really understand...they try. I have my FAmily, I don't know what I would do without them. We are getting ready for our annual family reunion, otherwise know as the Fanconi Anemia Family Meeting. It's at Camp Sunshine in Maine. Boy I know you would like there! You would fit right in and there is no doubt that you would be there, right by my side, supporting me all the way.
You know so often I hear "God doesn't give you more than you can handle" and I have to say that is a the stupidest comment I have ever heard! I somestimes can't handle it Mother. I sometimes wonder "why" do we have to go through all this BS and why are you not here to help me! It's hard.
I know you are in a much better place and I know that your spirit is always here with me. You are in my heart!
Happy Birthday Mother! I will thinking of you today and I will find a way to smile because I know you are cancer free and free from all the worries of this world we live in.
I love you!
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