Another year has come and gone, and to honest I can’t say that I am sad to see it go. This has been one of the worst years of my life. In the course of one year
1. I have lost my job and had to take a another job with a HUGE difference in pay
2. Patrick and I broke up and shattered any dreams of building a life with him and his family
3. I have found myself in a financial bind that seems like a bottomless pit
4. I had a huge scare when it appeared that Will was beginning to lost his response to Oxandrolone which prompted a round of visit to several of the transplant centers to discuss next steps
5. I have gained over 30lbs mostly due to stress and coming off of my antidepressants and hardly have anything that fits
6. I have started a new job that has an unbelievable amount of stress and uncertainty
7. I have broken my laptop
8. I have had numerous things around the house to break including the oven, dishwasher, front glass door, weather stripping, and more I am sure.
9. I was unable to go to VDC, which is something I was so looking forward too
10. I was introduced to the wonderful world of COBRA!!!
11. and to top it all off I have found myself in such a rut in my relationship with God that I am not sure how to overcome
Needless to say it’s been on hell of a year!
I know what most will say, focus on the positive and think about all the great things I do have for example I have two beautiful children who love me so much. Will is doing so great with the increase in his dosage that his counts are better than expected. I have a lot to be thankful for and please don’t get me wrong, I AM SO GRATEFUL but sometimes you just need to sulk a little and have a “why me” heart to heart with yourself. I think reflecting on what I will call one of the worst years ever will ultimate help me regroup and focus on how to move forward.
So what’s the motto going to be for 2009? Feeling Fine in 2009? Let It Shine in 09? Speak Your Mind in 2009? Let’s Realign in 09? Or maybe “Drink More Wine in 2009!?!
Whatever the motto is, I am looking forward to moving on because no matter what they say it wasn’t all that great in 2008!
Happy New Year!
Wednesday, December 31, 2008
Tuesday, December 23, 2008
Happy Holidays
I can't believe tomorrow is Christmas Eve! This season has been unlike any other, and it seems that I have not really had time to enjoy the holiday time like I usually do. I absolutely love Christmas. I love everything about it. I love shopping for the people I care about the most, and bringing joy to others. I usually have cards ready to go by December 1st and by this time we have usually gone to McAdenville at least 5 - 10 times and either driven or walked through. So far we have rode through once.
In the past when I was with the bank, we are usually slow and by December 15th it is quite and pretty much dead. I forgot what working in a Hotel was like during the Holidays and how it is rush rush with no time to do anything other than work. I have NEVER, and mean NEVER worked on Christmas, but this Christmas morning I will be in my office putting in my four hours in order to get paid. Same goes for Christmas Eve. I will be working until 4pm, after which we will rush to visit friends and then rush to Church.
My favorite service is the Christmas Eve candle light service. We always try to attend the late service. To me there is nothing quite like going to church on Christmas Eve, knowing that when it is over it is Christmas Day. I love singing Silent Night and seeing all the candles glowing. There is a peacefulness about that I am hoping I feel this year, since there hasn't been a lot of peacefulness lately.
I am trying so hard to have a good attitude and get in the spirit, but it is really difficult with all the stress. I somehow have to find a way to find that special place inside that I am missing. Seems like there is a lot missing, but I have to focus on the positive because in reality there is a lot of positive.
My kids are happy and we have such a great bond. My son is healthy and once again by the grace of God his counts are climbing upward. A friend of mine was visiting at my house and she commented on how much love there is in my home. I felt so bad for sometimes forgetting that, and for letting "life" get in the way. It's powerful to hear that from someone who comes in from the outside and looks in.
I hope everyone has a very Merry Christmas and a Happy Healthy New Year! I hope we can all learn how to slow down and live life and really enjoy it without all the distractions. I am going to make a commit to myself to get back to being ME and that starts by renewing my relationship with God.
I feel like I have lost myself along the way and in doing so I have lost a lot of what is important. I am not sure how, but somehow I am going to get back to that place....the 4th day.
GLYASDI,
Kayla
In the past when I was with the bank, we are usually slow and by December 15th it is quite and pretty much dead. I forgot what working in a Hotel was like during the Holidays and how it is rush rush with no time to do anything other than work. I have NEVER, and mean NEVER worked on Christmas, but this Christmas morning I will be in my office putting in my four hours in order to get paid. Same goes for Christmas Eve. I will be working until 4pm, after which we will rush to visit friends and then rush to Church.
My favorite service is the Christmas Eve candle light service. We always try to attend the late service. To me there is nothing quite like going to church on Christmas Eve, knowing that when it is over it is Christmas Day. I love singing Silent Night and seeing all the candles glowing. There is a peacefulness about that I am hoping I feel this year, since there hasn't been a lot of peacefulness lately.
I am trying so hard to have a good attitude and get in the spirit, but it is really difficult with all the stress. I somehow have to find a way to find that special place inside that I am missing. Seems like there is a lot missing, but I have to focus on the positive because in reality there is a lot of positive.
My kids are happy and we have such a great bond. My son is healthy and once again by the grace of God his counts are climbing upward. A friend of mine was visiting at my house and she commented on how much love there is in my home. I felt so bad for sometimes forgetting that, and for letting "life" get in the way. It's powerful to hear that from someone who comes in from the outside and looks in.
I hope everyone has a very Merry Christmas and a Happy Healthy New Year! I hope we can all learn how to slow down and live life and really enjoy it without all the distractions. I am going to make a commit to myself to get back to being ME and that starts by renewing my relationship with God.
I feel like I have lost myself along the way and in doing so I have lost a lot of what is important. I am not sure how, but somehow I am going to get back to that place....the 4th day.
GLYASDI,
Kayla
Monday, December 1, 2008
This site is my saving grace......
It's kind of nice to have a place where I can just be me, and not have to worry about who is or is not reading this. For example, I was going through some of Will's older journal posting, and I realized that many of them were very negative and filled with MY fears. They didn't really focus on Will that much. That why I decided to create my own Blog Spot, so I can say what I want, when I want and not worry about cluttering up Will's site with my opinions.
I have found myself in a really "rut" lately that I can't seem to get myself out of. I have found that over the past few months I have started eating a lot more, I am watching way more TV and I am spending way to my money (when I have it). My daily routine is eat and lay on the couch and watch reality shows that I could really care less about. My doctor told me last month that I have gained 30lbs since last year......and yet I keep shoveling it in! No motavation! No get-up-and-go! No Nothing.......
So yesterday I went to the YMCA to fill out the paper work to change my membership status. I have deffered it for four months in order to save money. I was going to cancel it, but the truth is I love going....when I can get my butt off the couch long enough to find my tennis shoes! So here is the deal.....I am giving myself three months. Begining today, I have until March 1st to get in gear. If I cannot or will not make the much needed changes then I will drop my memebership.
So my plan is to workout at LEAST three times a week (more would be great, but three is pushing it) and see what happens. I am not going to say I am giving up certain foods, so I am going to say I will "cut back" as much as possible. To be honest......along with hoping to fit back into my cute clothes, I REALLY just want to feel better. I have NO energy and no desire to do anything. So we will see what happens during the next three months.
Work is getting better. I have found that the less information I give about Will and our situation the better. They have no idea what all is going on inside my head and how many different directions I feel pulled in. The important thing is I go to work, I do my job well, and I stay off the radar.
Will is doing pretty good. He had a virus of some sort last week, and gave me a scare when he spiked a fever, but he is okay. I know how dangerous a serious infection can be right now so keeping him healthy is top priority. However that is pretty hard to do when he refuses to eat anything. I am hoping that things will change with Basketball season just around the corner. That is the one thing that seems to get him motivated. He will be playing on two different teams this year - one at his school and one at the YMCA. He is very excited.
Enough for today.....I will chat with you later.......
I have found myself in a really "rut" lately that I can't seem to get myself out of. I have found that over the past few months I have started eating a lot more, I am watching way more TV and I am spending way to my money (when I have it). My daily routine is eat and lay on the couch and watch reality shows that I could really care less about. My doctor told me last month that I have gained 30lbs since last year......and yet I keep shoveling it in! No motavation! No get-up-and-go! No Nothing.......
So yesterday I went to the YMCA to fill out the paper work to change my membership status. I have deffered it for four months in order to save money. I was going to cancel it, but the truth is I love going....when I can get my butt off the couch long enough to find my tennis shoes! So here is the deal.....I am giving myself three months. Begining today, I have until March 1st to get in gear. If I cannot or will not make the much needed changes then I will drop my memebership.
So my plan is to workout at LEAST three times a week (more would be great, but three is pushing it) and see what happens. I am not going to say I am giving up certain foods, so I am going to say I will "cut back" as much as possible. To be honest......along with hoping to fit back into my cute clothes, I REALLY just want to feel better. I have NO energy and no desire to do anything. So we will see what happens during the next three months.
Work is getting better. I have found that the less information I give about Will and our situation the better. They have no idea what all is going on inside my head and how many different directions I feel pulled in. The important thing is I go to work, I do my job well, and I stay off the radar.
Will is doing pretty good. He had a virus of some sort last week, and gave me a scare when he spiked a fever, but he is okay. I know how dangerous a serious infection can be right now so keeping him healthy is top priority. However that is pretty hard to do when he refuses to eat anything. I am hoping that things will change with Basketball season just around the corner. That is the one thing that seems to get him motivated. He will be playing on two different teams this year - one at his school and one at the YMCA. He is very excited.
Enough for today.....I will chat with you later.......
Friday, November 14, 2008
Still here......and feeling sorry for myself.......
It's been weeks since my last posting. Sometimes I get so caught up in the stress of everyday life that I let it consume me. I forget how unimportant some things are in the big picture that I get trapped focusing on the smaller stuff. For example, WORK! My day to day has been overwhelming, and I am fearful that my performance is not as stellar as it should/could be. I am reminded that sometimes less information about the "big picture" may be best, and I try to live life as normal as possible.
The truth is my life is not that normal, and my priority is not to anyone other than my children. My life is filled with doctors and decisions and the fear of the unknown. My life is filled with trying to educate myself on the latest and greatest, trying to following the stories of our Friends who are or have experienced some of the same obstacles. My life includes making contacts and giving back as much as possible.....even if it is just lending a shoulder. My life is filled with preparing for the best possible future, and researching the options.
How sad it is that I sometimes have to pretend all is well, when it may not be. I am so tired of trying to succeed in other areas of my life, when the only success that is important is the success of Will's transplant and making my children happy.
There just aren't enough hours in the day or enough time to really enjoy life when there are schedules to keep and stress to deal with. I hate that I have to do all of this alone. I hate that I don't have a partner to help carry the load. I hate that I feel like a failure sometimes for not being able to do it all......I just don't understand it.
I don't understand why I can't/don't have "that life"? You know.....that life where two people lead on each other and help each other deal with whatever life gives them. That life where the sole responsibility of EVERYTHING doesn't fall on my shoulders.
I see so many families who go through transplant and treatment, and they make it work because they are a team. It's not up to just one person to provide all the financial support or the insurance or the physical/emotional support.....they do it together. Why can't I have that? Why did God give me such a responsibility, without anyone to lean on? Why did he give me so much love in my heart, without anyone to share it with? I just don't get it.........
Just think how much better Will and Emily would have it if I had that "conventional family". That family that so many other people got.....but somehow we missed out.
I just feel like something is missing right now.
The truth is my life is not that normal, and my priority is not to anyone other than my children. My life is filled with doctors and decisions and the fear of the unknown. My life is filled with trying to educate myself on the latest and greatest, trying to following the stories of our Friends who are or have experienced some of the same obstacles. My life includes making contacts and giving back as much as possible.....even if it is just lending a shoulder. My life is filled with preparing for the best possible future, and researching the options.
How sad it is that I sometimes have to pretend all is well, when it may not be. I am so tired of trying to succeed in other areas of my life, when the only success that is important is the success of Will's transplant and making my children happy.
There just aren't enough hours in the day or enough time to really enjoy life when there are schedules to keep and stress to deal with. I hate that I have to do all of this alone. I hate that I don't have a partner to help carry the load. I hate that I feel like a failure sometimes for not being able to do it all......I just don't understand it.
I don't understand why I can't/don't have "that life"? You know.....that life where two people lead on each other and help each other deal with whatever life gives them. That life where the sole responsibility of EVERYTHING doesn't fall on my shoulders.
I see so many families who go through transplant and treatment, and they make it work because they are a team. It's not up to just one person to provide all the financial support or the insurance or the physical/emotional support.....they do it together. Why can't I have that? Why did God give me such a responsibility, without anyone to lean on? Why did he give me so much love in my heart, without anyone to share it with? I just don't get it.........
Just think how much better Will and Emily would have it if I had that "conventional family". That family that so many other people got.....but somehow we missed out.
I just feel like something is missing right now.
Wednesday, October 29, 2008
Decisions..........
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.
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.
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
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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