“it’s conclusive, your son has Fanconi Anemia”…..
Those are the words I heard on September 25, 2002. I also heard that “statistically, kids experience bone marrow failure by the age of 7” and “without a successful transplant, his life expectancy is 12 years old”, and let’s not forget “leukemia would be a walk in the park compared to what he’s up against”.
Never in a million years did I expect to be celebrating WILL’S 11th BIRTHDAY……and for today, he is HEALTHY!
This is a good day for us. I am sure next year when he hits twelve I will be even more overjoyed!
When you are told from the beginning that there really isn’t much of a future and that your son only has a 20% chance of surviving and then IF he does survive a bone marrow transplant he will have an EXTREMELY high chance that he will die of cancer before the age of 22.…you tend to enjoy life and the little things it has to offer a lot more.
I do have to say that Will isn’t really beating the odds, the odds are changing and they in the medical/research field are progressing each and everyday. Medical years are world apart from calendar years and we have come so far. It’s very exciting to see all of this progress unfold right before our very eyes. It’s exciting to see the direction that we are heading and to think that maybe….just maybe…..we will one day have a cure.
We are in a good place and I am so excited to be able to sit back and smile, and enjoy this wonderful day!
Will’s birthday!
Monday, March 16, 2009
Wednesday, December 31, 2008
Happy Freking New Year.....and all that....
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!
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!
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!
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