Thursday, March 26, 2009

Finally Getting Some Transplant INFO :)

We came home Wednesday evening. Her fever broke Tuesday afternoon and so they let her come home Wednesday night after getting another blood transfusion. Avarie has not quite been herself this week, even after the transfusion she is just so exhausted this week. Usually she is just that tired when she needs blood, that is one of the signs of needing more blood, but even after getting it she continues to be really tired. I guess she is just trying to heal. I know I sure would sleep a lot if I was going through this.
We got some REALLY GREAT news today.... Avarie has a confirmed donor. All we know is that it is a man and he is a perfect 6 point match. That means that the 6 main DNA markers that they look for match hers. We are so excited. I can't even explain the feelings I have toward this man that I don't even know. That he would willingly be put on the registry and donate just because he knows it will help someone. He is taking time out of his life to go through all the additional testing and then the time of giving blood to collect the stem cells through all because he wants to help someone. I love this man whoever he is. My understanding is that he will remain anonymous to us for at least a couple of years and then we can request to meet him and if he accepts then we can exchange info. They do that to protect everyones privacy in the beginning and then just in case the transplant doesn't go well, there is no guilt on his part that he failed some how and caused a sad outcome or any blame on our parts, not that we would at all, but you never know how people will react in this situations.
The plan is to still move forward with the transplant in June, we don't have an exact date yet. We are planning to meet with the transplant team in a couple of weeks to re-evaluate Avarie and make sure that they still feel OK about moving forward with transplant for her. They are concerned about how weak she is already, that's not a good thing when going in to transplant. They like you to be as strong possible because the transplant is so hard on the body.
The other issue that came up today is where we live. The Dr's are concerned that we are a little too far away from the hospital for her 100 days of intensive follow up after the 4-6 weeks of isolation. The requirement is that Avarie be with in an hour of the hospital at all times, but they prefer them to be within only 30 minutes if possible. We are currently with good traffic about 45 minutes away, but we all know how bad I-5 can get around the Portland area during rush hours. They said that they won't require us to move closer, but that they are nervous about our location. They do require some families to relocate at least temporarily. We had been considering a move anyway and this has just confirmed to us that we need to aggressively look to relocate. Our current plan is to try to find a home around the Milwaukie, Gladstone, Oregon City area. We are planning on moving in with Craig's parents, so we are looking for a home that would accommodate both of our families. So anyone out there that knows any homes for rent that are at least a 4 bedroom please think of us and get the word out to your Wards and friends. We need something that will allow our two families some privacy. My mother and father in law love us dearly, but living 24/7 with us and our children will be a little trying for them. They also have Craig's niece and her 4 year old daughter staying with them, so we need to accommodate them for awhile also. We would love a 5 bedroom, but after looking at the prices of 5 bedrooms, we have decided that a 4 would do. It just needs to be the right set up and layout for us to make it work. We are hoping to stay in this situation for awhile to help us get through this time and hopefully to allow Craig to go back to school. After this last job loss, we have been praying for the right direction. We have always felt good about Craig going back to school, but we have let life get in the way time and time again. We now know what sacrifice really is and realize that we can make school work. We believe we are definitely ready and able to sacrifice to make it work, it will all just depend on the living situation. If we can find the right house then we will get through this and we will finally be able to accomplish something we have been wanting and needing to do for quite a while. So please, pass along our need for a home to anyone that you think of, sometimes people are considering renting a home, but haven't quite decided and if they hear that there is someone desperately looking then they might consider us and a lot of times people don't advertise the home because of the cost or they're not sure how to do it on the computer(this was my dad's problem for awhile, he finally figured it out though). We would like to stay around the Milwaukie area, that is where my in laws have spent the majority of their life and they don't want to move from that area, but anywhere even close could be considered if it was the right house. Thanks for reading this long post.

4 comments:

Faye said...

WE ARE PRAYING HERE IN CANTON GA.MY HEART HURTS FOR YOU.I PRAY THAT GOD WILL GIVE MOMMY THE STRENGTH TO GET THROUGH THIS,AND HE WILL BE WITH AVARIE.SENDING YOU ALL HUGS! BLESSINGS,FAYE

Heather said...

I have a house in mind. Right next to the milwaukie stake center is where the Crabb family lived and they are trying to sell it but I think they would consider renting it for you. It's huge and definately has room for everyone.
It's worth looking into. I'll ask my sister Heidi who lives next door. Love you guys and wish I could just give you a house.

Heather said...

I meant the Ruscliff building where Jim does seminary not the stake center. I told Heidi and she is going to email Wenda Crabb tonight and let me know.

K-jo said...

Jenell,
I just finished reading from beginning to end, and my heart aches for you and your family. You have been in our prayers all week. You are one amazing mother, Avarie you are one beautiful princess, and Giles family may you all be blessed for your enduring hope, faith and tears through this trial! What a truly amazing family you are!
All my Love,
Kara