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.......

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.

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.

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!

$$$

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.....

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.

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.......