Well yesterday we had to go to the clinic to check Jasons liver enzymes again. Still way to high to start transplant tomorrow. They are actually going up. So they asked that Jason stop all medications and we go back in on Friday for more lab work to check the levels again.

The plan for now is to not do a bone marrow transplant but to do a peripheral stem cell transplant.

Basically that is putting more mature cells in your body from the donors blood than getting baby cells from the marrow. Better chance of cure, more chance of GVHD (graft vs host disease)

So alot processing in my head right now.

Jason looks and feels great though so that really makes me feel good.

It is spring break this week so him and Austin can fight all day like brothers do. The fighting drives me nuts but i let it slide so boys can be boys

A lot at stake today

I know i havent updated in a while. There has been alot going on. We got home about two weeks ago. WOW were we ready. I am ready. I am starting to hate the hospital. We miss being home and the stress is starting to break me. All the sick kids around me and all the things going on are really breaking me down and i just sit there and cry. Jason runs to me (moves from his bed to my couch) and sits and my lap and tells me it will all be okay and dont worry. I keep asking him "why do you always have to comfort me when you are the one that is sick?" He is so strong i dont know how he does it.

He had to come home on IV meds which scared me since i am not familiar with how to do all that. So we get an IV pole and run his medication through every night. That has been a challenge in itself because i miss a step or do it wrong. I get so stressed out about it that if i just relaxed it would be ok. He knows how to run it all and will catch me but phew it makes me nervous.

So transplant is supposed to be around middle of next week. But his liver is elevated and at this point no where near able to handle transplant. I have to take him back today to test his levels and see what direction to go.

It just doesnt right. You look at him and he is fine. We actually had to take him to the barber the other day and trim his hair. He is so strong the chemo doesnt make it fall out.

But next week will be another story. I have to hold back tears when they tells us all that is going to happen. It is scary to think of my little one having so much put into his body and hoping it works.

We did find a donor. A 22 year old female. That is all we know about her. But she is a live saver. Whoever you are i owe you my own life.

OK gotta stop now or i will start crying and i have alot of work to do today.
Shawns bday is also tomorrow so gotta plan something.

Will keep everyone udpated!!! Thanks again!

Jason is doing great as always. He is getting blood today. Was looking pretty pale. His counts are playing around a little but growing so i hope we get to go home within the next week or so. We have been here since Jan 22nd and i am ready. So far the plan is to get us out then back around March 8th then transplant around March 15th. That is if everything goes ok with the donor..which we still dont have one nailed down. They have 2 that are good and another one came in yesterday so they are ordering the results to be expedited..then once they have those results will pick the best out of the 3..such a long process but so worth it for my beautiful son.

As for my other son..wow he is growing up so fast and i never see him it seems like. I feel like i am missing out on such an important part of his growing up. So thankful for Shawn for all he does

Jason is still doing great. No ANC yet but patiently waiting.
He got plateletes yesterday and getting blood today
I am going to get Austin today to bring him up so they boys can hang for a while. They havent spent time together for almost a week. And i miss seeing them interact.

Update on donor...
We had 4 come in
2 are too much of a mismatch so they arent canidates any longer.
1 is still in the running although they are a KIR match and we are looking for a mismatch if possible
The other is in the running we are just still waiting on KIR results
And one more person coming in on Feb15
So WOW we had 5 potientials. Feel pretty good about that

Will keep everyone posted.

Thanks to Shawn for all the love and support you give..I hate that my family isnt together and i am so glad i have you to lean on. I love you babe

My dad is going to stay here Sat night so we are going to hang out with Austin and take him putt putt golfing and goofing around. I cant wait!!!

OK the infection came back as Ecoli but he is doing good. Only fevers that one day so he is doing great. Smiling and laughing and doing homework. He is reading over my shoulder as i write this so i better be nice...Jason says hi to everyone.
Thanks Daphne for the cinnamon rolls..

Yesterday about 4am Jason started getting a fever. Then by 8am he was shaking, vomitting, sweating, in pain and feeling like crap. So of course they do the normal steps of starting you on 3 antibiotics and drawing blood to see if you have an infection. He seemed to get a little better through out the day and we just layed around and dozed in and out. Then again around 6pm he was back to having a 101.8 fever. The nurse came in and said he has a bacterial infection in his red line of his broviac which is why he is getting sick. He has nothing in his system to fight off the infection. So lets pray the medicine does the job.
This am the nurse came in and said that she is surprise he is doing as well as he is with this type of infection. The kids ususally get more sick. But you know Jason...hard as steel. His hair still hasnt fell out from this round. He is such a great kid

Yesterday was a fun day. Jason has alot of homework he needs to get done this week and of course they needed to give him 3 units of blood yesterday so he slept all day. The day before he slept all day cause his blood was low in his system. Poor guy cant win for anything. He had a reaction to the platelets and was getting leg cramps and hives all over his body and started coughing. He also hasnt been able to poop for about 4 days so they are loading him up on meds to make him go.
Finally last night around 12:30 am he was done getting his blood with no reactions and as we are trying to sleep there are code red alarms being announced over the loud speaker. The roommate is trying to go to the bathroom and is hitting everything in his path with his pole. I guess after so long the noise just becomes back ground noise.
I know these kids hate being here and i feel so sorry for them.
I just wish this would hurry up and get done!!!