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.

20 comments:

mCat said...

As soon as I saw the title of this post, my heart sunk.

Of course prayers and love are coming from the Catmull home.

And anything else you want or need.

xoxox

Kristine said...

I'm so sorry you have to go through a week of waiting. I can't imagine how scared you must be...I'd be a mess I'm sure. You're all in my thoughts and prayers.

I'm praying it's just a blip and everything is 100% fine after the test.

Unknown said...

i'm so sorry kristen! you guys are always in our prayers - we'll just step them up a notch & make sure you're on the san antonio temple prayer roll when we go next. nothing like all of central texas praying for you! ;) you're amazing. hang in there.

Susi said...

We will PRAY!!!! Sorry you have to wait a week! That is awful. Hugs!!!

Lidia said...

I'm praying for you my beloved children. I know it is a hard time not only for you but for whole family. Please, TRUST HEAVENLY FATHER, be donfident, we are permenently with you. Love you with all our heart. Everything will be okay... GP David

Stacy said...

oh wow - that just didn't ever cross my mind as something that could happen while she was still on chemo. I am sorry that you have to deal with all that worry - we will pray really hard that it isn't a relapse. We love sweet little Brinley - she is such an angel. Hang in there Torres family - we love you all.

Ali said...

You got it.

Rent the A&E Pride & Prejudice...it will help ease those restless, sleepless nights.

LaAna said...

Our thoughts, love, and prayers continue to be with you, your family and sweet Brinley.

Anonymous said...

Oh Kristen...I am so, so sorry. I can't imagine waiting a week to find out something so scary. We will pray for sweet Brinley. She is such a beautiful, sweet little girl and Ashley and I just adore her.

Sara said...

I'm sorry Kristin! It makes me so sad knowing all that little Brinley is going through (and you guys, too!) We constantly think of all of you and pray for your family! Brinley is lucky to have such an amazing family:) Hang in there!

Anonymous said...

prayers for no relapse and a resolution for the pain that is a permanent resolution. have they ruled out AVN with Brinley? Skyler is getting and MRI done for that soon.When skyler had his last bone marrow aspiration done, his dr called me the same day to say there was no relapse. See if you can request that. I know they still have to send the results out, but they can do a smear right after. I hate the waiting game:(

Emily said...

I'm so sorry you have to wait one whole long week. Gosh, that's hard. Lots of prayers coming your way. We love you all!!

Anonymous said...

hi kristen
i am sophie from greece.i am so sorry to read your last post!i am praying and hopping that everything will turn to be ok!your kids are great!please hold hard and update!i really-really want all this pain to be a false alarm.
hugs from greece-sophie

Missy said...

Hi Kristin,
Sending lots of healthy healing thougts your way....I too hope this is just a fluke and this pain mysteriously disappears, this like this often do as soon as we begin to investigate further.

Missy Anderson
Colo Springs, CO

Anonymous said...

Kristen I have been reading your posts for about a month and you and your family sound like you have soooooo much faith to see everything through. I am a new member to the church just recently and you have been a great example that prayer does work.

I hope that you and brinley and your family will be alright in the end.

Marilyn Smith said...

Lots of love and prayers for Brinley! Keep holding on, Kristin. I admire you so much for all you are going through and how strong you are!

Unknown said...

Just wanted you to know that you have a whole "new" and large family praying for you every step of the way!!

Rebecca said...

Hi there! I found Brinley's blog through a series of other blogs and have been following you guys for a little while now. I go to college in California and I am fascinated by how well families like your cope with the pain cancer has given you. I've become so interested in this that I'm considering pediatric Oncology as a career, or some other field where I can help kids with cancer. This post broke my heart a little bit, but I am hoping and praying for your family. You have the most adorable family and I look forward to reading your posts each day...truly inspirational! Stay strong - you have every right to be worried and frustrated, but everything will be resolved soon!

Rebecca

Matt & Jen Hanks said...

Kristin and fam,

Matt and I were so sad for you all when we read this. We are hoping for the best and will pray some extra prayers for Brinley and for you guys to find comfort and peace. We love you guys and miss you a lot!

Anonymous said...

Parents just know when things are not right. I'm so sorry this is happening. Hopefully it will not be as you suspect, but good news instead. We will all be praying for sweet Brinley.
Love,
Mom