The reason they stopped is because while we were in St. Louis trying the study drug with the chemo to try and get her blood counts to rebound, we had a minor set back.
The study drug was trying to shut down her liver.
We arrived for the fourth day of treatment (out of seven) and she had a fever. We noticed she was yellow. As the day progressed she was turning orange.
They tested her blood and to put this all in perspective, normal billrubin (liver waste) counts are supposed to be 1.0 or under. When she came into the hospital before treatment, she was at a 1.5. Elevated but not bad.
On the fourth day of treatment, she was an 11.8.
She was severely jaundiced.
So on the fourth day of treatment, we were admitted to the hospital instead. She was developing a fever and not responding well to treatment so we were back at square one.
While all of this seems really frustrating, we knew we were taking a chance when we agreed to do the clinical trial. When you get leukemia because of a previous chemo treatment like she did, the odds are stacked against you. That's why we had to try the trial. We were hoping it would get to a place where she was blood transfusion independent and that would buy us some time before the bone marrow transplant.
But either way, we were going to have to do the bone marrow transplant. The clinical trial wasn't a long term fix. So her doctor removing her from that trial was a good thing. It just wasn't right for her body.
Where are we now?
At this time we are back in Little Rock. She goes twice a week to the hospital to have her blood checked and get transfusions if needed. She is having to get them at least once a week but again, that isn't necessarily bad news. It is just the way this disease works.
She did start losing her hair this past week from what little chemo she did get so I'm currently it hot pursuit of some fun hats for her. If you know of a place to get some cool beenie hats, let me know. If you haven't had a chance to read all the updates from St. Louis, you should. She is a CHARACTER so if I can find some funny hats for her, I know she'll wear them and fun with it.
When we talked to the nurse in St. Louis earlier in the week, they were still in the process of finding the best match. They have two blood samples that they are testing further to see if it will match her. They said we would be in transplant phase anywhere from 6 - 8 weeks from now if one of those work.
Everyone is asking what they can do to help us.
1) Register as a potential donor. Please.
You have no idea what it can do for someone else. Even if you aren't a match for Pat, you may be a match for someone. And to give someone in a situation like this hope is priceless. When you are in this situation and you hear that a bone marrow donation is the only answer, you are putting your life in the hands of strangers.
You want to be a hero? You want to leave a legacy? You want to do something meaningful with your life?
Give someone else more time with their family. Give a grandmother more time to watch her grandson grow up. Give more time to a young child so that a mother and father don't have to face the heartache of losing their child.
The stories are endless of people out there who are waiting on their hero. You could could be that here. To find out, you simply swab the inside of your cheek.
How to Register
2) Send prayers.
Pat has no immune system right now. Any little virus or infection can do some serious damage. We need an air of protection around her. We need her to be able to eat well, and stay hydrated, and stay well! Since the diagnosis back in November/December, she has been hospitalized twice with pneumonia.
That's irritating. And to be honest it is scary.
When this process starts up again, pray that she has strength to get through. That she receives the treatment well. That she accepts the donated marrow well.
4) Participate in the giveaway.
Promote it. We want to raise awareness with this as well. Again, you may not be a match for Pat but there are millions of others who need their heroes just as bad as we do. Post your swabbing selfie on Instagram or Twitter. Post a reason why this is so important or why others should swab.
The giveaway is on the original drive post. You can find it here.
3) Please stop by the following bloggers and show them some love as well.
I reached out to them to ask a favor... help me promote this drive and help find a match. And then they took it and went above and beyond. They have tweeted, blogged, facebooked, emailed.... these girls are my angels and I consider each and every one of them my friends now. Real angels do exist here on earth and they live among us doing little things for little people. Please reach out to them and thank them for being such wonderful people in what can sometimes be a very ugly world.
Nina @ theninashow.com
Holly @ thestanfieldclan.com
Erin @ shesabigstar.com
Meg @ nerkyblog.com
Amanda @ abrownieworld.blogspot.com
Royal @ royalproclaims.blogspot.com
Tammy @ youwouldntcallitadrinkingproblem.com
If you would like to read the story from beginning to end, here you go (they aren't all sad. we find can find humor in almost anything):
First Post (Big Bad Bloggers Bone Marrow Drive)
Second Post (St. Louis Days 1 and 2)
Third Post (Day 3: First Day of Chemo and Rikki Lost her Shit)
Fourth Post (Day "What the Eff Ever" Update)
Fifth Post (On Gratitude and Little Things)
Sixth Post (Let's Get Some Perspective)
Seventh Post (Shit My MIL Says)
Eighth Post (WTF Wednesday: Disposable Panties)
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