Sunday, May 4, 2014

Results

The dreaded/wanted bone marrow aspiration happened Monday. She had to fast until 2:30 and that was torture. I felt so bad for her. She handled it pretty well. The drive home was long and I am pretty much sick of that drive. The poor girl hates to travel... especially when she isn't feeling well. Breaks my heart.
We started "Round 2", which includes 5 days of steroids and Vincristine (chemo through her PICC). Oh the steroids... I hate them. I think she hates them too. She is older and understands that they make her ornery, hurt and really hungry. It was a long week. I really wanted to enjoy our week at home. I did enjoy it, but that doesn't mean that it wasn't hard. I wanted to be a normal family and enjoy each other's company. That wasn't an option when the steroids started taking effect. I didn't want to depend on anyone, I didn't want to ask for help, I didn't want to feel incapable or mentally/physically exhausted. But I did.
Don't get me wrong, she loved being home. Steroids at home are way better than steroids at the hospital.
She is still loving her new room. She loved having some freedom because she had good counts all week. It was nice to be able to go out with little restrictions and feel "normal".
 

 Waiting until Thursday for the results was torture. I tried not to focus on it, but I couldn't. When my phone rang, I had the biggest knot in my stomach. I was trying to gauge the "results" by the way my doc sounded on the phone. It felt like 10 minutes before he broke the news, but it was probably more like 3 minutes. He let us know that the bone marrow aspiration showed 0% leukemia cells. Nothing... hallelujah! The overwhelming feeling was more than I could handle. They have decided that we will finish round 2 and then prepare for the bone marrow transplant. I guess that means potentially 4 more weeks and then the transplant process begins. We will also do another bone marrow aspiration at the end of this round to make sure she is still in remission. Wow. I am sure the testing for Tait will begin as well. I am hoping she has gained a little weight so that MAYBE we would be able to get enough marrow from her body. So much to think about.


Having my babies under one roof, was a feeling that I hope I never forget. Even though it's been extremely difficult because I feel like I can't do it all, there were still some sweet moments that I hope to remember forever. I know the next 5 months..ish will not be this way so I hope to keep those moments dear to my heart. The next little while is going to be a giant struggle and challenge. I hope I can do it... I hope we can do it. We have the greatest support system ever. Seriously. Family, friends, neighbors and strangers that have already done so much for us. It is very humbling and reminds me that there is so much good in this world.
We are headed up tomorrow for a 3-5 day stay in the hospital (if things go well). It will start out with clinic and an LP (that she has to fast until 2pm for). I am hoping and praying that they do because my brother is getting married and we would love to be a part of it all. We should have the weekend off and then head back up to be checked in for another 5 day stay with an LP at the end.
 
 
 
Taleah hasn't been feeling well coming off of the steroids. She usually doesn't. But this time she has said that her belly hurts a lot and that she needs to throw up. Well, today she did throw up. She hasn't wanted to sit up at all and has no energy. Her counts don't show that she needs blood yet so I am attributing it to the steroids. Watching her suffer and be in pain is so difficult. I know there is worse to come, but I just really hate cancer. Hate is such a strong word, but I really do HATE cancer. I don't like what it does to these kids, I don't like what it does to families, actually I don't like anything about it. Yes, some really great things have happened because of our "cancer journey" but it is hard to remember those sometimes. Tonight I just want to be mad and sad for little Taleah. It seems so unfair that she can't be a normal kid and have a carefree life. Instead, she is stressed about the bone marrow transplant and what is to come (yet, she really has no idea). It's going to be fine. She is tough. We will get through. Today.. I am just a little mad.


4 comments:

  1. You have every right to be mad and sad! Cancer sucks!
    That is great news about the aspiration! You guys are always in our prayers. Love you!

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  2. Cancer sucks! Those pictures of Taleah and Tait together are the sweetest. Hoping she does well this week so you can participate in the wedding fun.

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  3. I have been following Taleah's journey from the beginning via blog. Please know that you have prayers being lifted from Maine for Taleah's healing along with peace for your family. Happier days ahead.

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