We have been dealing with a lot here in the last few weeks. Dealing with some real nut cases in there too!!!Some one who is trying to screw with my little girls life, by messing with some other things! Jealous asses need to grow UP!!
We still don't have a date for transplant because the hospital is still in "negations" with the insurance. Don't ask I don't even know if I could explain it correctly....I can try. We received confirmation that yes they did indeed up the transplant cap to $800,000.00. The hospital also received this info, but now they are trying decipher the writing, the hospital said the insurance starts 5 days before transplant and the hospital stops billing under transplant 50 days after transplant and then bills the insurance under major medical. Yes it's crazy I know and it is getting to be very aggravating!! I talked to the donor coordinators last Friday and they said their biggest hold up is that they need a date. They cannot secure a donor till they have a date, not a tentative date a date set in stone. Once they have that date they can call the National Marrow center and have them start the work up on the donor and get things set up for the donor to donate on the transplant date. There is a lot involved in getting this life saving marrow! It is all done on the day of transplant. What will happen is Amelia will have a work up week, which is a full week of nothing but appointments, they will test every major organ in her body to see how they are functioning and to make sure they are up to par and in great working order to with stand the major stress that they will be under and also get a baseline to see where they are functioning at. Once that is done she will be scheduled for her central line placement, then she will check into the hospital on an evening, we will have to report to the hospital and spend the night and then the next morning things begin and we start to count down at -7. Day -7 will be full body radiation...a day that will stick in my head for ever with Marshall! We are not allowed to be in there with them for obvious reasons, they are in there all a lone and we sit out side in a small waiting room with a sign flashing radiation in use.....I remember looking at Tyren and saying there is no turning back now....do you realize what they are doing to our child in there? They were basically killing him. It is a very sinking feeling at that moment in time. I know that there is a bigger picture and that is an aspect of a total picture...but in that moment it's hard to breath. It didn't last very long maybe a half an hour to an hour and we were back in the room.
Then the next few days are chemo days and a few other things, until day -1 that is a day of rest. How they can rest is beyond me when you have just put them through pure hell and they are so sick, with nausea and sores in their mouth and all the way down their throat!! That is why to this day Marshall will very seldom drink carbonated can drinks...they still burn his throat. and you pray that this doesn't happen to your child....
Yep Marshall has major radiation burns!
Day 0 will be transplant day. On that day some where in the world early that morning a person will go into the hospital and have a needle inserted into their hip bone and the marrow drawn out. It will be placed in care in a package to keep it safe and fresh and will be flown to Minneapolis MN and it will arrive at the hospital and be processed and filtered and be ready for you child and it will look like this.....
Then over the next 100 days you sit and watch your child go through so many different phases that you never thought a human body could or even should go through....
If everything goes according to plan you will be out of the hospital in about 4 -5 weeks and going to clinic every day till things are much better and going every other day and so forth and so on. Now I have no experience in that as we were hospitalized for exactly 5 months!! From Sept 11th to February 14th. Then of course once you get out if you get a fever back in you go and that did happen to Marshall just 4 short days from getting out of the hospital. I am praying that this go around for Amelia will be different and we will have a more "normal" transplant! Pray with me for this please?!?!?
Well gotta run, I will try to keep you updated on this insurance stuff. I will try to walk you through every step of this transplant as if you were right there with us!
Thank you in advance for your continued support and prayers they truly mean a lot to all of us...some times it is what carries us through the rough spots!
Blessings,
