Need help from those who lost a parent at a young age...

I am wanting help from anyone who lost a parent when they were young. I want to know if your parent did or left you anything that made growing up without them easier.

I have a book that I have written letters in for her. They mostly are for specific ages to help through puberty and give her advice on how to act... what is right and wrong. I also have a scrapbook of me and her and me together... and many of all of us as she grows up.

I have a hope chest that I have filled with things that are important to me or special in anyway that I want to pass down to her, and I have put notes on everything to tell her what it is and what it meant to me.

I have a couple little video clips of her and I together so she can see me with her and hopefully see how much I love her.

I started doing these things shortly after I was diagnosed, because I wanted to be sure she would "remember" me. I also figured that even if God heals me she would like to have these things some day anyway.

I still have both of my parents and really don't know what would mean most to someone who has lost a parent. I am hoping there are some people out there who have some ideas for me.... Thanks for any advice :)

Still Fighting the Fight

Well, it's that time again! I just had another PET scan and brain MRI on Tuesday. Wednesday I met with my doctors and got the results. I hadn't had an MRI since my radiosurgery in September. I was a little anxious to see if the surgery had done anything. The good news is my brain looked good. It appears the surgery did it's job. This doesn't mean more met's can't turn up later but for now it is good.

 The bad news, the last PET scan in November they could not see any cancer so we continued the same chemo as it appeared to be working. This scan shows one of the many tumors has reappeared. It is only one of them, but it came back while on chemo this time not even while taking a break from treatment. This is not a good thing. It shows that the cancer has become resistant to this chemo. Although I am upset over this and was hoping and praying for more time with no cancer being seen on the scans, I have to look at the big picture. I have been on this same chemo for a year now. That is actually amazing. My doctor told me when the cancer began spreading, and the goal went from killing the cancer to managing it, that chemo's will work for maybe 3 months or so and then the cancer becomes resistant so we will have to change chemo when that happens. Well, this chemo worked alot longer then that. Praise the Lord for giving me that extra time!

Since the cancer is becoming resistant we have to change chemo's. Unfortunately, I have had many different chemo's now and don't have many choices. My doctor would like to get me in a trial. They are all phase I trials, which means there isn't any proof that it will work, but they are coming at the cancer in a different way. We have been in the process of appealing the insurance company to cover a trial. In the past they have been clear that they will not cover anything to do with a trial or complications of a trial... so this has kept me out of them. Yesterday the insurance company told me I had to purchase Medicare and it is to be my primary insurance. Although it is going to cost us more, Medicare will cover 80% of trials. So if the insurance company will be willing to cover the other 20% I will probably be entering a trial.

In the meantime, we will be switching to another chemotherapy. I was not willing to hold off chemo to see if the insurance will work with us, because you never know how long that will take. I felt that if the cancer was growing while on chemo it could explode while off. 

Thank you all for your prayers and support during this never ending battle. It is hard for me to believe in a couple months it will be 3 years battling this obsessive disease. Part of the time I hate that I have to continually fight to be here, and the other part I am thanking God for giving me way longer than my doctor ever thought I would have. October of 2010 when the cancer began spreading my doctor felt I only had 6 months. It is now 2012 and praise the Lord I am here and only 1 tumor is big enough to see on the scans. 

I am still praying the Lord will miraculously heal me, but I also know that He may not choose to do that. Although I can not say I am ready to leave my loved ones, it is becoming more realistic each time the cancer grows. I try to not think about it, but there are times when it hits me that this time next year I may not be here. I know that should not make me sad, because I will be in Heaven with my loving Father.... but I am human and as I have never seen Heaven or been there to experience it, I can't picture it but can picture and feel what it would be like to have to leave those I love behind. I think I hurt more for them then I do for myself, and I am a control freak and hate the thought of not being here to raise my baby girl. But these are things I am trying to put in the Lord's hands, and hopefully when the time draws near I will be at peace and have anticipation to meet my Heavenly Father and see my Heavenly home to wait for the ones I love to join me.