Okay, I mean long week. Here's the update for the week. It sucked. I hope Taylor doesn't read this because that word is actually not allowed in my house.

Here are the details if you want to keep reading. I have been sick for 4 days (finally beginning to feel better today), we'll start with that. Fever, stuffy nose, sore throat, the works. Unfortunate timing for David, because Brinley has gotten up for hours in the middle of the night for 3 or 4 nights in a row. I mean for hours. Thank you steroids. I have been OUT so he has been on his own until last night( since I was beginning to feel better, I figured I'd give the poor guy a break). I have to find humor in all of this or I would absolutely lose my mind, so here it is.
Brinley is hilarious when she wakes up at night. It's like someone snuck into her room and wound her up and let her go on us. Her mouth is moving a mile a minute and her feet are too. Someday I will videotape it because it is so funny. David said all he could her last night was "thump, thump, thump, thump" of her running around downstairs. Insane.
On Wednesday, Brinley caught the second virus going around our house and went down to the hospital for a dose of antibiotics and a release for decent counts. Thursday, fever is back. I convinced them she has a virus and is acting fine and they say to follow up on Friday since the fever is low. Thursday night was met with some major hacking of junk. So I call first thing Friday, getting nervous about lung infections and all. We go in at 10:00. Here is a recap of our day.

10:00 - Arrive at clinic. Nurse comes in to quickly access port so we can be "in and out" once we see her counts are fine and get a culture. Ahem, mom forgot to put the numbing cream on the port, the numbing cream that takes 30 minutes to work. Mom of the year award number one. More to come. Nurse applies numbing cream.

10:30 - Nurse comes back for access now that site is numb. Access goes as usual, crying and holding down. Nurse goes to draw blood, everything comes out fine for culture, all of a sudden port stops working and no blood will come out. Nurse tries and tries, calls on other nurses to try and try, to no avail.

11:30 - This isn't going to work, no matter WHAT position Brinley is placed in, and they order TPA to put in the port to dissolve any clots/blockage. TPA needs to sit for 30 minutes to work. In the meantime Mylee is getting hungry. She is more hungry than usual because I rushed out the door without feeding her rice cereal. Mom of the Year award #2. Mom doesn't have enough milk. Let me get the bottle to give her some formula. OOPS. Forgot to bring a bottle. Award #3. Try to nurse what little I can.

12:30 - TPA is not working either. What now? Either de-access and re-access, or do a finger stick. Um, finger stick! And hope the port works next time. Finger sticker comes, sticks finger, Brinley screams and is very angry. Will not speak to finger sticker. I actually said "can you say thank you?" then I realized I was telling her to thank the person who just sliced her finger and squeezed out her blood. OF COURSE SHE WON'T SAY THANK YOU!! Call David, I won't make it home in time for Jade to come home from school. David goes to the rescue.

1:30 - Counts come back, ANC is 300. Neutropenia. Again. I'm sorry, did someone say maintenance was going to be waaaaay easier? Direct admission....unleeeeeeess the hospital is totally full and your kid actually looks fine....let's send her home. Which is fine with me because she really is fine, just caught the same stinking virus Jade and I had. However, we need to make sure it really IS viral, so let's stick that tube up her nose and down her throat again so we are comfortable sending her home. In the meantime, poor Mylee is in desperate need of a nap and getting fussy. Poopie diaper, mom didn't bring wipes because we don't have any, on my "to do" list for today. Ha. Award #4.

2:00 - Nurse comes in to collect mucous. Brinley immediately recognizes the tube from the ER last week and starts panicking and crying. Mom, once again, holds her down so nurse can stuck the tube up her nose. There all done. That's funny, I didn't hear it suck it out like last time. Did we get it? Yes, says nurse. Oh wait, tube was not actually connected to suction device. Nurse, alsmost in tears for making such a mistake (she gets the nurse of the year award) (btw, she is one of our favorites, so I am not mad at nurse), tells Brinley we have to do it again. Brinley wails, Mom holds her down, nurse sticks tube up nose again, down throat, Brinley gags, coughs, hacks, and tube comes out with sample. Another nurse holds Mylee, who is screaming in unison with Brinley. One more thing down.

2:30 - Doctor comes in and explains that we need Brinley's bone marrow to recover and start producing white blood cells again. She has had way too much neutropenia and her marrow needs a little help because it is dangerous for her to be neutropenic so often. It is expected in the beginning phases, but not in Long Term Maintenance. She needs a neupogen shot every day until her counts recover, hopefully within a couple days. Nurse orders neupogen shot and antibiotic. We wait, and wait, and wait.

3:30 - Ahh, antibiotic arrives. Start infusion....20 minutes later....infusion complete. Take dressing off port, Brinley wails, de-access port. Gets shot in leg, one last little jab to make her day even better, as if it wasn't already good enough. Hope you are picking up the sarcasm. Brinley tells nurse "you maked me have blood!" from shot site. Nurse says sorry, Brinley will not say goodbye to nurse after being silly with her most of the day. I guess if you stick someone with a needle on their way out with a big smile on your face you aren't gonna get much of a sweet goodbye, no matter how much you bonded throughout the day.

4:00 - We are in the car, Brinley is sleeping, Mylee is hungry (and ate a HUGE bowl of rice when we got home) and I am dumbfounded wondering if I am really in the right life. David has to work late because of all the time he missed today, so I am flying solo for a while.

9:00 - Kids are finally in bed, after many tears, books, songs, and more tears. David arrives home from work. We look at each other with bloodshot eyes, and sit down to watch 2 hours of Lost and forget about the day for a while. Time for bed.

The good news: I actually made dinner. Oooooh, the temptation was strong to eat out after this day, but I had to make up for all of those "are you seriously the mother of four" moments I had at the hospital. And now I am typing on the computer because if I look anywhere else I will see what a mess the house is. When is Disney World? Ten Days? Will everyone be healthy? We shall see.....

For 5 days in a row I have rocked my sick child. For 5 days in a row I have listened to her tell me she is sick. For 5 days in a row I have seen a shell of my happy 3 year old daughter. For 5 days in a row I have fought back tears of sadness for her and the dreadful disease that has been thrust upon her. And I have had an awakening.

In the beginning, I wanted to get through all of this for US. For my family. For my Brinley. I wanted the 2 1/2 years to be over so we could get on with our lives. A year later, I want more than that. I want more than for this to be over for Brinley.

This month is Childhood Cancer Awareness Month. I thought about Breast Cancer Awareness. During that awareness month, I see pink everywhere. I have purchased many items in support of Breast Cancer Awareness. Brinley was diagnosed during Childhood Cancer Awareness Month. I had no idea until later in the month when a friend pointed it out to me. As I look around this month, I am wondering "where is all the gold?" Where are all the Childhood Cancer Awareness items in the grocery store? They are not there. Why? Maybe it is because the people who suffer through breast cancer have a voice, and use it. They KNOW what it is like to have the horrible disease, to go through chemotherapy, or radiation, to battle for their lives. And they want the rest of the world to know too.

My awakening was this: I am Brinley's voice. I am her witness. David and I, we are the ones who have seen everything she has gone through. We have seen her pain and her suffering. No one else has been there for everything she has gone through. She doesn't have a voice in this world yet. It is run by adults. I am the one who must speak on behalf of children with cancer, because I have seen my child have to fight it. The day we go off treatment I will be one happy woman, but that same day, 46 other children will begin their journey through hell. A hell that I would not wish on anyone.

This is not right. It is not right for ANY child to be so sick, not just MY child. It is not right for ANY child to have to suffer a long and painful death. No child should have to suffer it and no parent or sibling should have to watch it. We need a cure. We need advocates for children with cancer. We need adults who will make the world aware of the suffering that is happening. So I will become one of those adults. And I hope that anyone who has followed us, anyone who has prayed for Brinley or any other child with cancer, will become one too, in whatever way you can. Donating money, or time, or passing out awareness ribbons. No matter how small or big, we can all be a voice for someone who doesn't have one. Here are some facts:

Childhood Cancer Facts
  • Each school day, 46 children are diagnosed with cancer.
  • One in 330 children will develop cancer by age 20.
  • Each year in the U.S. over 12,600 children are diagnosed with cancer.
  • Although the 5 year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis.
  • Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
  • 80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.
  • There are currently more than 270,000 childhood cancer survivors in the U.S.
  • Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe.
(taken from candlelighters.org)

When the children do survive, the long term side effects can be harsh.
Brinley asked me to rock her yesterday while I was already rocking her.
"Rock me Mommy".
"I am rocking you."
"But I still feel sick."
"I know".
My heart breaks every day I have to do this. When David gave her the steroids that make her so sick, she said to me "Daddy doesn't make me sick, he makes me better." It dawned on me that when we say "here is your medicine" she thinks we are helping her to feel better. With the very medicine that makes her sick. I went to the bathroom to get her a drink and had a good cry.

I don't know how you can go through this and not wonder God's role in it all. I don't believe he enjoys our suffering, especially when it is a child. But I do believe that suffering causes people to take action, and I know He enjoys us helping each other, coming to each other's aide. I do know that action is what gets things done. And I can sit back and help Brinley through this treatment and then go back to the way life was pre-cancer, or I can take action and be a voice for a group of people who need a voice so desperately. Would God have me go back to my life pre-cancer? I don't think so. How can I sit by and watch this and not take action? That would be tragic.

So we are starting with ribbons. A little late in the month, but hey, it's still September. If you live near us, and see me and I don't give you a gold ribbon, ask me for a ribbon to wear! When people ask you about it, TELL THEM about the children with cancer. Tell them about Brinley. Tell them to go to curesearch.org and see what they can do to help. If you don't live by me, buy or make a gold ribbon. They are super easy to make. We bought enough to make 300 ribbons for $4.50. And I am not crafty, those of you who know me can attest to that. E-mail me a picture of you in your ribbons. I will show Brinley. kristinltorres@gmail.com

I have awakened and am ready to speak out! No more of this!! Let's find a cure and give children with cancer a chance at life. One child lost to cancer is one too many. One child sick with a frown on their face because of the poison running through their body is one too many. One child with long term side effects from chemo is one too many. We have to do better. That child is somebody's son, daughter, sister, brother, friend, niece, nephew, cousin. And that one is too many.