I took Brinley for her monthly chemo today. I have been very worried about her behavior and pains this month, and found out my worries are warranted. I had kept a log of the things she is complaining about, when they are happening and how long it lasts. I presented it to Dr. Druzgal, and she confirmed to me that this is certainly cause to worry. It may sound crazy, but I needed to hear that. She told me exactly what I needed from her, that I have a good reason to worry. It didn't make me worry any more or any less, it just made me feel like I am not crazy. It's an awful feeling to worry about everything now days, and I am constantly wondering if I am over-reacting. So no, I am not over-reacting. Thank you Dr. Druzgal. We met with the other oncologist, Dr. Fluchel and he was also in agreement.


We are going to check her bone marrow next Thursday to see if she has relapsed. They felt it would be okay to schedule her LP early as opposed making us wait until next month to check her marrow. They don't want us to worry needlessly for a month when they can just as easily push up her LP.

A relapse would be devastating for us, and we are praying like crazy that it is not the case. I didn't even dare ask what the course of treatment would be if she has relapsed, so I don't know where we would go from there, but I do know that it would be like starting over again with harsher treatments.

If we rule out relapse next week, then we move on to see what is causing the pain. They said she should not be complaining of this much pain, but let's make sure the cancer is not back before we proceed. We all joked that once we check her marrow, her pain may very well mysteriously disappear, wouldn't THAT be nice?! Some weird freakish thing that just resolves itself!

Her blood counts are actually perfectly normal, no sign whatsoever that she has relapsed. However, Brinley's leukemia presented itself different than most cases. She never had abnormal blood counts, or had any blasts in her blood. She never complained or was sick, she just started fracturing bones. So I presented that to them as well, my worry is that if we wait until it presents itself, it will do it again with broken bones, and that was so very painful for her. They agreed this is the best route to take, and we were all in agreement with how to proceed.

We have a week to worry now, so I have decided I will need to stay very busy and distracted. David and I both get a knot in our stomach's thinking about it, but I just can't let myself lose it. There is a very good chance that this is not a relapse, but there is simply enough "evidence" to warrant a check. I think I have enough to do that I will not go insane, until I lay my head on the pillow at night and am left to my thoughts.

Confession: I am scared. Please, please pray for our Brinley. We love her so much and can't bear the thought of her going through any more than she already has. Thank you, thank you, thank you, those prayers mean the world to us.

I have a story to tell you. I just learned it tonight, shame on me for not knowing this story from the beginning of our association with this wonderful organization, HopeKids. In 2008, right before Brinley was diagnosed, there was a family who moved here to Utah. They left Chandler, Arizona, the place they were comfortable, their home, their parents. Not because they have family here, not because they were offered a job with $$ they couldn't resist. They moved here to bring hope to children with life-threatening illnesses. They moved here to open a chapter of HopeKids in Utah. We have been a HopeKids family for quite a few months now, and we absolutely LOVE them. Here is what makes them different. This couple, the Oldhams, take the time to get to know each and every HopeKids family. They visit them at the hospital, they worry about them, they pray for them, I'm certain by name. They have so many events, constantly giving us something fun and free to do. Movies, parties, craft nights, etc. Don't they sound great? Well, there's more. They lost a daughter to cancer 5 years ago. They know the battle we are in. They watched their daughter fight it until it took her life.


I can only imagine the grief that comes with losing a child. I am certain they have seen more than enough from the beast cancer. Yet here they are, submerging themselves in the world of cancer and other life threatening illnesses to help kids who are still in the battle. They took their pain and they turned it to help people. They have done so much good to help so many people, and they CARE. If that isn't inspirational, I don't know what is.

Since they opened this chapter, they have grown to over 200 families. They are getting new families almost daily, which is wonderful. The growth, however, is difficult to keep up with financially. They are doing a fundraising dinner and auction on May 22nd to help raise these much needed finances. If you would like to participate, it is $50/plate. If you know of a company who would like to sponsor a whole table, there are options for that as well. I can't begin to tell you the good that they do, your money would be bringing those amazing smiles to kids with life-threatening illnesses, believe me, I have seen them on my Brinley. (The other kids in the family too!!) So I feel like since I am in there and experiencing it first hand, I am the perfect person to tell you how wonderful they are and how much we need them to stick around!! If you'd like to participate go to www.hopekids.org and go to the Faces of Hope link on the right sidebar. If you aren't able, but know someone who is, please spread the word. It's all about the kids.

UPDATE ON BRINLEY:
This has been a very strange month for Brinley. She bursts into tears constantly, hurts often, stomach, knees, back. She's tired and wants to lay down or be rocked. It's like steroid behavior, without the steroids. Then every once in a while, she'll perk up and get a couple hours of play time. If someone comes to visit, or her and Jade find something fun to play. The weather has been so nice and Brinley loves to swing, so she has spent some time outside. Just when I think she must be feeling better, she starts feeling bad again. She wanted to go to church so bad Sunday, but I knew she was not feeling good. She just laid on the floor before church and cried because she didn't want to walk anymore, but she wanted to go to church. We let her go and I peeked in on her in primary and she was on her teacher's lap getting a cuddle. She just looked so tired, but it was very sweet, she loves her primary teachers. I was glad we let her go.

We go in on Thursday for chemo and start a steroid pulse, even though it feels like we are already dealing with that. I just feel so bad for her and I don't know what is wrong. Hopefully it will pass. Thanks for checking in, I know all of your lives are busy. Thanks for caring about Brinley and our family.