Brinley went in for chemo yesterday and started another steroid pulse. Clinic went wonderfully, Brinley did great getting accessed and everything went so smoothly. Brinley has gained a little weight, she weighs about 27 lbs., and the nutritionist was content with that. She is still in about the 5th percentile, but we'll take what we can get. She got taller too! Her ANC is 1200, so we will leave her at 50% 6MP and 25% MTX. I was hoping for an increase, but not this time. Keep us in your prayers as we go through the hard week, maybe it won't be so bad. Have a wonderful new year.
We have had an absolutely wonderful Christmas. My fingers were crossed for no fevers, and it was a fever free Christmas. It has been a bit so I'll start with one of our traditional activities, of course, gingerbread houses. The kids love gingerbread houses, something about decorating a whole house with candy maybe?
Then we had my Aunt Lori and her family in town from Maryland, so we packed like sardines in my living room and had a musical show the kids put together for their Great Grandma Hanks. It was so much fun, we were all so happy.
Aunt Lori brought chimes, and the kids got to each play one. I have never heard them so quiet, they were concentrating so hard on getting their part right. I loved having people I love crammed into my house, and I am not joking. I didn't used to be this way, it was always too stressful, I guess something about cancer has changed me and I don't care how many people are at my house or how crazy it is. I love being surrounded by people I love. Okay, getting the house ready was a little stressful, but that's a different story.
Next up, the cousin party to exchange gifts at my sister Melanie's house. Another fun night.
Then our traditional Christmas Eve nativity. Here is Joseph and shepherd Brinley, Uncle Dennis and Brinley.
Joseph and Mary (Jade) with baby Jesus, played by Mylee.
Then the opening of the first gift on Christmas Eve, PAJAMAS! Never a surprise, but always anticipated!
Leaving some cookies for santa and some carrots for his reindeer.
Brinley writing Santa a letter.
Christmas morning, FINALLY! Jade had been counting down the days and it couldn't come fast enough! Look how happy!
Grandma and Grandpa Torres were here from Las Vegas, we loved having them.
We truly had a wonderful Christmas. I wish I could have been able to find the time to write more, because I have felt so grateful for the Savior and I love the Spirit of Christmas when we get to celebrate his birth. I hope you all had a wonderful Christmas too!
This first picture has a story to go with it. A couple weeks ago, I asked the girls to clean up the living room. Taylor was in charge. She told the girls to take their stuff and put it away. A few minutes later Brinley came in and proudly said "Taylor, I cleaned up ALL my stuff!" Later that night I went into the downstairs bathroom, and could barely open the door....when I started asking around, I found out these were all the things Taylor had asked Brinley to put away.
I feel like I left everyone hanging, so I will give a quick update before bed. Sorry for the request for prayers and then...nothing! Well the LP went absolutely wonderfully. The best one yet, I think I will have to solicit prayers more often for those. She woke up fine, no crying, and did not get any fever. Her ANC was at 1300, so they are leaving her at 25% methotrexate and 50% 6MP, and we'll see what next month's counts look like. Clinic was such a long day. They had to give her chemo before the LP, so they did that, and we chatted with her doctors. I sure love them. Then we headed down for the LP. Then back up for her pentamidine. That always makes her sick during the infusion, but then she feels better when it's over. The pharmacy made us wait forever, until one of the nurses had to "break some knee caps" as she put it, and finally got the meds. LOL
I've been pretty quiet on the blog, I guess because I'm feeling pretty quiet myself. I have had a hard week. We are on countdown to one more year of chemo if all goes well. Next year at this time, she will have just received her last dose of chemotherapy. What a Christmas present. I can't wait. I know we can get through this year, I just know it. At the same time it sounds so long. Brinley gets a couple weeks to feel good and then we start all over again. It feels so repetitive, like we are in a boxing match and keep getting knocked down. We finally get back up only to get knocked down again. I am tired of Brinley being knocked down. All of us really. Especially when I know that it is coming. Brinley doesn't know when the blow is coming. It is tomorrow. I will drive to clinic tomorrow to knock her down again. I know, I know, this is what is saving her life. Still, I want to take her and run sometimes so she doesn't have to go through ANY more. We all know where that would leave us, so I am between a rock and a hard place.
Happy Thanksgiving! I am thankful for:
-How well Brinley's treatment is working
-A family that loves me even though I can be less than pleasant at times
-The knowledge of a Heavenly Father who loves and KNOWS me
-Parents who raised me in a loving home and think I'm pretty darned cool - someone has to!
-Each one of my kids, every day that they are alive and breathing and with me
-Laughter. I love to laugh
-Time passing - last year we were in much more difficult place
-Mylee joining our family - I know she was hand picked for us to bring our family joy, you can't look at her without smiling
-My husband to share my life with
-Good people. I LOVE good, kind people
-Everyone reading this blog, I can feel your love and support
-Food & shelter, oh how we take those two things for granted!
We have so much to be thankful for, I'll stop there because I am so stuffed all I want to do is go plop down on the couch! Hope you Thanksgiving was as lovely as ours!
Things are better now, we made it through another steroid pulse. Whew. Twelve more to go!!!
Steroid week is always so hard. However, this week I decided to do something different. I have been completely focused on making things happy around here. I have made sure to spend a few minutes each morning praying and reading the scriptures so I remember what this life is all about. Then I turn on some hymns all day. Literally. All day. I feel so in tune with the Lord and it has had such a calming affect. It has helped ME tremendously. I have avoided talking on the phone and other distractions, like housecleaning (besides the necessities). I've actually been able to get more done than usual because I am actually balancing myself. I have just felt such a peace this time. I am hoping that the rest of the steroid pulse will continue this way. Knock on wood.
We have had quite the week. Brinley was feeling better by Friday, so they started her back up on her oral chemo and we started her steroids yesterday. And they are definitely taking affect this morning. We managed to get the prevacid this month, (thank you, you know who you are!) and I am hoping that gives her some relief from feeling sick this month. Her counts were really good, so they are talking about increasing her dose of oral chemo, which would be a good thing. They want to check her again in 2 weeks to see if her counts are still good. I am really hoping they are.
The test was negative for swine flu for Brinley. We were all surprised with that because we were all pretty sure it was. Docs and nurses too.
Just wanted to petition a few prayers out there. Jade came home yesterday and was suddenly very sick with flu symptoms. It came on so fast. Brinley woke up this morning with a fever, up to 102, and so off to Primary hospital we went. She got the flu test and we will find out tomorrow. In the meantime, they gave her the IV chemo that was supposed to be Thursday so we don't have to go back. All other chemo is on hold until her fever is gone. We are not starting steroids yet until she is better. Thankfully, her counts are good, so we are not in-patient. They are pretty sure it is H1N1, so she is on the Tamiflu (holy $$$!). Our oncologist was nice enough to write a prescription for Jade too so I didn't have to take her in. I am trying not to worry, but how could I not? With Brinley in the "high risk" category, well, you know. And poor Jade is so sick.
Last reminder! Please join us tomorrow as we hold our first annual Alex's Lemonade Stand in honor of Brinley. We will be selling lemonade and hot chocolate to help raise funds for childhood cancer research. ALL of the proceeds will go to Alex's Lemonade Stand, who in turn put the money into grants to fund important research to FIND A CURE! So let's do our part to cure childhood cancer, "one cup at a time". Hope to see you there!
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