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Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths STRAIGHT.

Wednesday, November 17, 2010


We got Amelia's counts back...They are stable and will get us a ticket for another month.
Counts are
Wbc 3.4 (White Blood Cells)
Hgb 8.2 (hemoglobin)
Plt 24 (platelets)

ANC 850 (Absolute Nutraphil Count, Immune system) they like to have this abouve 1000 and Not below 500.

I have asked her doctor about a drug that might keep her counts up. The problem is they are not sure what they can do to the out come of a bone marrow transplant. Marshall was on a harsh one for years, but we had no choice with him as we could not find a match for him. Below is what the Dr sent me back about my question when I asked him how low would we let her counts get and can we try Danazole an androgen known to help with the Hgb.

"This is a good question. I dont know the answer on the danazol; it might be ok these days but Im hesitant to give. The good news is that you still have time as Amelia's counts have stayed up there longer than I expected. Ill keep my fingers crossed that she can wait. Id first use the G CSF (Neupogen) if I had do for her ANC if <500 but you are right that only the danazol has a chance for helping the platelets (although there is a new drug these days we might try). If she needs it, Ill see if I can get it for her. Nonetheless, Im hoping that the new policy starts July 2011 and I bet she can make that date. John"

So this is where we are today still needing you to pray for her, she has the sniffles right now and a cough...
I am thankful that her counts have remained stable, I just really pray that they can stay that way till all of this insurance stuff can be deciphered!
I'm hoping to get up some recipes later today....They were YUMMY!

Monday, November 8, 2010


Greetings faithful followers and fans...
Yes it had been quite a while since I last updated this site. We have been very busy with life and well to me that is just a great thing around here.

I just brought Amelia to get her counts this morning, so now I sit on pins and needles to find out her counts. I am praying really hard that they are OK, we had a finger stick done last Tuesday and well her hemoglobin was not the best at 7.4, I really pray that it is a wee bit better than that today. I am praying hard that we can make it to at least June with her counts, because I really really want to go with Dr Wagner for a transplant.

So a little of what has been happening. I am busy running around trying to keep up with my kids and their social calender. Marshall is in the church choir and the school choir so he has been busy with those. The choir will also be preforming "Babes in Toyland" in the beginning of December, so he is having to stay after school every day for practice.
Amelia is also in her school's choir and she will be preforming both Thursday and Friday. Thursday is at school and Friday we will head to New Orleans to the D Day Museum for her performance there.
Nate is in cub scouts, and that keeps us pretty busy too. Tonight is a pack meeting and he has to say his pledge in order to earn so kind of badge or something, I don't know I can't keep up with all of this stuff on top of regular school work and projects and all!!

To be honest I have been having a hard time dealing with that fact that Amelia's counts are dropping. Truthfully I am not sure why?? I mean I know that it is coming and I've known this for 10 years now. It is just NEVER easy to realize that your child has to go through something so horrible. Especially when she is doing great and looking great and feeling really well. Just her bone marrow is really sucking! That to me just doesn't seem fair not one single bit!! She is such a tough cookie and so happy. I hate FA!! It's just not fair that I may not get to see my kiddo's grow up, learn to do the little things in life, maybe never get married. I try, I really REALLY try to usually see the positive things in life and look for the bright side. There are more good days than bad days, but here lately it has been hitting me really hard. Sometime I will find my self crying about it for no real reason. I just get to thinking about it and boom it just hits me.
Well I don't want to start now so I think I will move on.

Our kitchen is finished!! It took 4 weeks to complete it, and that was thanks to my wonderful dad who did 95% of the work himself. The counter tops were the only things he didn't do....Here are a few pictures...

and now here it is today...I LOVE IT!! So much more room to move in it.

Yes it is much cleaner now, those were taken the weekend of Halloween and it was a busy in and out of the house weekend....
But I'm going to go dirty it up now making these cute little things for my littlest boy....

Then off to make quick beef stroganoff, who knows maybe I'll even post them tomorrow for Tasty Tuesday....Anyway have a great day!!!