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
Wednesday, August 27, 2008
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!
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