Wow! I have to say that Dr. Farid Boulad just blew me away! He was so interesting and his expertise is amazing. I am so confused on "where" to go now.......before this week I was about 90% leaning toward Cincy. I think I have ruled out Minnesota (but maybe not), only because I feel just as confident that Will can get the same quality of care in Cincinnati. Since we have been going to Cincinnati for six years, we are comfortable there and it feels good. Now, out of nowhere comes NEW YORK!
One thing about NY that I didn't care for was the Ronald McDonald House. I know that beggars can't be choosers, but I have stayed at two other RMD's and I have to tell you this just didn't do it for me. It was rather dreary and not at all open and inviting. It was nothing like Cincy or Minnesota. The rooms were "okay" as far as that goes, but they would definitely have to have a good cleaning! There was "mold" on our shower curtain. The decor was dark.......I really didn't feel comfortable there.
Also, I can't believe how much money I spent! I mean all the siteseeing we did was free, so how is it that I spent a ton of cash??? TAXI's! They are outragious! Food is way over priced too. I am not sure I can afford to take Will to transplant in NY!
Dr. Boulad was incredible! He is such a kid person. Will really like him a lot. He went into great detail about the transplant and how he is just a little bit different from the others. He really explained a lot about T-cells, in great detail. He also explained how he doesn't use steriods as long as the other centers. I mean he was awesome!
I think it works to our benefit that he and Dr. Gilman have worked together. Dr. Gilman is located here in Charlotte and will be our follow up care (I hope). I haven't broken the news to him that we have decided not to have it done at Levine's, but I would love to still have him on Will's local care team. I hope that works out.
Then......there's Cincinnati! We LOVE them there. We love the hospital, the city, the people, the RMH.....everything! Why am I so hesitant to just confirm Cincy???? I don't know? I mean I love them.....so why can't I just go with that? I am so confused! I really love Dr. Davies and Dr. Smith from Cincy too.
I am just going to pray about it and see where I am led. I will keep you posted!
K.
Wednesday, October 29, 2008
Friday, October 17, 2008
God is good!
I don't even know what to say, except Praise God! I have really special angels out there looking out for me.
I got some WONDERFUL news yesterday regarding our benefits here at work! Nothing is confirmed yet, but there are plans in motions to start offering us some paid holiday, paid time off and maybe even a better insurance plan! I can't tell you have great that would be!!!
I am not so depressed today. I see a light at the end of the tunnel.....I just have to keep myself out of the tunnel going forward. I can do it.
The big plan now is to focus on Will and start saving money for transplant. I don't want to have to depend on anyone for anything during that time. My family has already said that is no financial help from them at all. That really hurts to hear, but it make me more determined to not even ask.
I know God will take care of us, and I feel like he is giving me a chance to prove myself now. We will be okay.
Will is feeling so much better! He is so looking forward to seeing Emily. He loves her so much. He has already bought her Christmas present. He picked it out, and paid for it with his own money. He is so excited! He wants to go ahead and give it to her now. I know she doesn't read this, so I can tell you that it's a tie-dye poster with a peace sign on it. He is so thoughtful....and that is SO her! I don't even want to think about Christmas shopping this year! I have already gotten my niece and nephew.....and now I only have to buy for my kids. Everyone else is SOL.
I have a VERY busy weekend! Meeting at church, a Godstock Fundraiser, a church picnic and visit at my dad's at some time......
Have a great weekend!
I got some WONDERFUL news yesterday regarding our benefits here at work! Nothing is confirmed yet, but there are plans in motions to start offering us some paid holiday, paid time off and maybe even a better insurance plan! I can't tell you have great that would be!!!
I am not so depressed today. I see a light at the end of the tunnel.....I just have to keep myself out of the tunnel going forward. I can do it.
The big plan now is to focus on Will and start saving money for transplant. I don't want to have to depend on anyone for anything during that time. My family has already said that is no financial help from them at all. That really hurts to hear, but it make me more determined to not even ask.
I know God will take care of us, and I feel like he is giving me a chance to prove myself now. We will be okay.
Will is feeling so much better! He is so looking forward to seeing Emily. He loves her so much. He has already bought her Christmas present. He picked it out, and paid for it with his own money. He is so excited! He wants to go ahead and give it to her now. I know she doesn't read this, so I can tell you that it's a tie-dye poster with a peace sign on it. He is so thoughtful....and that is SO her! I don't even want to think about Christmas shopping this year! I have already gotten my niece and nephew.....and now I only have to buy for my kids. Everyone else is SOL.
I have a VERY busy weekend! Meeting at church, a Godstock Fundraiser, a church picnic and visit at my dad's at some time......
Have a great weekend!
Thursday, October 16, 2008
$$$
Well have gotten myself in such a bind, and I am not sure what to do next. I hate that so many things in this world have to revolve around the mighty dollar. Everyone says money can't buy happiness, but it sure can cause a lot of pain and frustration. Why? Why must I worry about things like Insurance, mortgage, child support, bills, groceries.......and everyday expenses?
Why is it that a man will create a fictitious company and have half his income paid out to that company....just to avoid paying child support? Why is it that a man can own FOUR houses, TWO cars, a van, a boat, a jet ski and God knows what else.....but he doesn't pay his child support on time and doesn't pay nearly enough consider his net worth?? Why doesn't he ever see his son, or take an interest in his life? Why doesn't he care that his son is about to go through a HORRIBLE experience of having a bone marrow transplant? I will NEVER understand!
Since I lost my job at BOA and all the benefits that go with it my finances have taking a beating. I have been out of work over the past 5 months about 2 weeks without pay. I have traveled to Cincinnati, spent money I didn't have and then had to pay for medication that is now finally approved through insurance.
I am just VERY frustrated right now. I know things will get better, but right now I need to just have a good cry (and maybe a cigarette).
This too will pass.....
Why is it that a man will create a fictitious company and have half his income paid out to that company....just to avoid paying child support? Why is it that a man can own FOUR houses, TWO cars, a van, a boat, a jet ski and God knows what else.....but he doesn't pay his child support on time and doesn't pay nearly enough consider his net worth?? Why doesn't he ever see his son, or take an interest in his life? Why doesn't he care that his son is about to go through a HORRIBLE experience of having a bone marrow transplant? I will NEVER understand!
Since I lost my job at BOA and all the benefits that go with it my finances have taking a beating. I have been out of work over the past 5 months about 2 weeks without pay. I have traveled to Cincinnati, spent money I didn't have and then had to pay for medication that is now finally approved through insurance.
I am just VERY frustrated right now. I know things will get better, but right now I need to just have a good cry (and maybe a cigarette).
This too will pass.....
Saturday, September 20, 2008
Update...........
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.
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.
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
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