We are just finishing up steroid week here in Cancerland, and while it was not as bad as last month, it is never a fun week. Brinley's stomach gets so upset and there is not much we can do about it. Our insurance doesn't cover prevacid, which is supposed to help w/ the indigestion steroids cause, so to get it would be over $100 each month. So they tried a liquid form of zantac and she refuses to take it. With all the meds I force her to take, I am just not willing to force this one down. I am really tired of these weeks that she is sick. I'll leave it at that.


She started telling me what her tummy says this week. I know how upset her stomach feels because she is obsessed with telling me things like "my tummy wants to swing. It said 'I want to swing'" (The voice for her tummy is about an octave higher than her normal voice) Or "My tummy wants a snack, did you her it? It said 'I want a snack!'" I try very hard not to laugh because Brinley doesn't like to be laughed at unless she is TRYING to be funny. She will wrinkle up her nose and yell "it's not funny!", however, her mad face is even funnier, you see the problem?

I never even updated on clinic last Thursday. Brinley was a superstar getting her port accessed. She just put on her tough face (oh so cute) and held still. She was so proud of herself that no one had to hold her down. Her counts are still not to where they should be so that we can increase her dose of oral chemo. She had a test done to see if she was low on a particular enzyme that would explain why her counts are so low (it affects your body's ability to metabolize the chemo quickly), but the levels were normal. So the next step was to take her off the septra (the antibiotic she take that prevents a certain type of flu that is very difficult to treat in cancer patients) because that can lower counts as well. They replaced it with IV pentamidine and it takes an hour at clinic to infuse. So it made for a longer visit, but she had no reactions to it, and that is good. She will get it once a month, and if her counts continue to be low they will just switch her back to the septra for convenience. I do not like this low dose of the oral chemo, I would like to see her back up to at least 50%. Relapse is such a big fear of any cancer parent and I don't want to leave the door open anywhere for the cancer to come back.

Update on ME! (Haha, I bet you weren't expecting that!) About a month ago I signed up to be an advocate for CureSearch, (you should too!) and soon after received an e-mail to write a letter to our State Representatives and Congressman about some much need funding for childhood cancer research. I wrote the letters through the CureSearch website and went on my merry way. Last week I received an e-mail from the director of Advocacy at CureSearch saying that she read my letter and it just so happens that they do not have a Team Leader in Utah (they have a team leader in 43 of the 50 states). She wanted me to become Utah's Team Leader. Gasp. I told her I needed some info, and to talk to my hubby and I'd get back to her. David gave the green light, he has a bit more confidence in me than I do in myself. I prayed about it since I have 4 kids and not an abundance of spare time and my family has to come first. I also know that I have to fight for this cause. Cancer has awakened my mamma bear, not just for Brinley, but for any child who has to go through this.

I got the packet in the mail, and as I started reading it I just started crying because I knew that I was supposed to do it. I just knew it. So I accepted. I am terrified. No joke. But all I have to do is think about Brinley, or any one of the kids I know going through it, or any one of the kids I've seen taken by this killer, and I can do just about anything. I still don't quite know what I am in for, but time will tell. I will be going to Washington D.C. in January for 2 days where they do some (much needed!) training and meet with members of Congress. I am very excited and very nervous.

I got the perfect e-mail today from HopeKids, they send little "hope minutes" to the parents of the kids signed up. Today they sent The Serenity Prayer: "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

I cannot change that Brinley has cancer. I can't take it away, and I have to accept that. The outcome of this will be what it is. I CAN do this: fight like crazy to make the world notice. That can CHANGE things. The more people fighting, the more the world will notice. Do I have the courage for that? How could I watch Brinley go through this an not have courage? She gives me courage. All of my kids do.





9 comments:

Anonymous said...

To say I am very proud of you Kristin would be no surprise, but I am "really" proud of you for accepting this inevitable call to use your voice,driven by your love and passion for Brinley and kids everywhere. I pray for sweet Brinley to feel better soon xo(I must stop reading these blogs before make-up in the a.m.) Here's to a good day ;)
xoxoxoxoxoxox

Lisl said...

That is wonderful that you were invited to Washington D.C to meet congress.

Rachel Inbar said...

Who's with me to donate so Brinley can get her medicine?

Marilyn Smith said...

Kristin, you are amazing! You are a very strong woman and I'm proud to be related to you!

Dani said...

Kristin,
Honestly you are one of the most inspirational people I know. You have no idea how much I look up to you.

Anonymous said...

Kristin I am so proud of you!!!!!!!! and you will be able to accomplish many good things. And abauto the drog that will make Brinley feel better(please) we (the family) can came up with the help neded.Again congratulations!!!!!Love Lidia

Dennis said...

woohoo!! that sounds like an AWESOME opportunity!!! what a privilege I'm so happy for you Kristin! and I thought I reached the love maximum for Brinley, but after reading the episode of the talking tummy, I just broke through all barriers of love I had for that little cutie!!!

Stacy said...

That is great news. I am sure you will do awesome. Way to be! And the talking tummy and her silly faces - I can totally believe it. She is so funny - even and more when she doesn't want to be. Way to get through another steriod week.

Anonymous said...

You don't know me, but I've been reading your blog since a 6-year-old boy in our community was diagnosed with Leukemia about a month ago. I couldn't help passing on some information that has crossed my path. A friend's daughter is on prevacid and just tried a preggy pop(for morning sickness) from her mom's store. Now she just uses preggy pops because they work so much better than prevacid. Just thought you might want to try them.