The last thing on the list has been checked off. Brinley did great with her port removal surgery. When she woke up and saw it was gone, groggy as she was, the biggest smile spread accross her face and her feet started kicking. We didn't have time to do the echocardiogram, we will do it next month. Those of you who have followed this journey for a while will know what I mean when I say that from here on out, a fever will just be a fever!! Break out the tylenol and take care of it! And from the queen of fevers, Brinley, that will be wonderful!! No more ER trips with $250 copays!!

Getting ready for surgery, wearing her tu-tu the nurses gave her on her last chemo day.


Leaving the hospital, still pretty groggy.

She's feeling pretty good this morning, I think she will recover pretty quickly. She already asked to have a friend over, I told her she probably should let her body rest a little before we start that. I love that we are done with this. So, so happy.

To the port!! Tomorrow is Brinley's surgery to remove her port. I thought she would be sad, like she was when we pulled her broviac line and she cried like it was a part of her we were taking away. Nope, she is all smiles, because "then I can't get accessed anymore!" Tomorrow is also her first off-treatment check. So she will get a blood test to see her counts and look for cancer cells. She should also get an echocardiogram to make sure she does not have any heart damage from the chemo.

To be honest, today has been a worrisome day for me. There is always a worry when there is a surgery involved, but then I also worry about the cancer. It's not very logical, Brinley is feeling great still. I'm sure everything will go fine, I mean they have been checking for cancer cells for two years now, and haven't seen any yet!!

If you could just give Brin a shout out in your prayers tonight, it would be much appreciated!! Will update tomorrow.


For those of you who don't live here, Festival of Trees is a HUGE annual fundraiser for Primary Children's Hospital. We had someone in our neighborhood contact us who wanted to do a tree in Brinley's honor this year. It was called "I'm Dreaming". I was beautiful and touching that someone would want to honor her this way. She loved it, and it sold, so someone has it in their house for Christmas this year :) Diehl's and Debbi, we can't thank you enough.


Here's some of our Park City adventure from the time-share my mom and dad donated to us to celebrate. First let me say exactly what was intended with this little getaway. To enjoy each other's company with not a care in the world. Mission accomplished. The hotel we stayed at was beautiful. We had so much space to just veg...
They had crafts in the game room scheduled that the kids could attend. Taylor even enjoyed them, as you can see.
We arm wrestled, and I was the champion.
For a minute.
Show off.
Poor little Mylee got the stomach flu the second day. Vomited all over at the pool. But really, what's a little stomach bug when you've been dealing with cancer for a couple years. Life goes on. Although you can't look at this little face and not feel bad..
Brinley got pink-eye too. As I was staring a $100 co-pay in the face for quick-care, I decided to call the on-call oncologist to see if they would save us. She did. She called in a scrip and all was well again!

TV. Lots and lots of TV. I have no shame in admitting it. We rented movies day and night and caught up on movies we've missed.
Our ONE DAY out was to go tubing. It was so much fun.

Taylor and I literally watched Hannah Montana and Wizards of Waverly Place until we couldn't keep our eyes open any more. She was in heaven, and I discovered that they are actually pretty funny. Who knew.
Ahhh, the best part. A heated outdoor/indoor pool. Swimming in the snow, you can't capture that on a picture. It was awesome.
Okay, two days out. Our last day we went bowling.
Friday night, our last evening there, we had a surprise party and sat the kids all on the couch. Once we had lured them into thinking mom was going to go off on some mushy ordeal about how blessed we all are, we silly sprayed them! They each got their own can and we started our party off with a silly string war. It lasted all of 4 minutes, maybe less, and then 45 minutes of clean-up. But the memories of mom and dad attacking them with silly string, I think it was worth it. We played WII together and had a great time.

So to summarize, TV, junk food, sleeping until 9, staying up until 1am (SOME of us), swimming, tubing, bowling, games. I'd say our trip was a huge success to celebrate no more chemo. We all loved it. Mom and Dad, thank you for giving us those memories.

Brinley decked out in her gifts from the nurses at the hospital.

I've been feeling like I need to gear up for something. I finally realized yesterday that Brinley would be getting her monthly chemo today. After a couple of good weeks, I feel anxious for something bad to prepare for, it's been our life for so long now. So instead of gearing up for chemo, I am gearing up for...ANOTHER CELEBRATION! Yes, another. Here's what we've been up to. For Thanksgiving Taylor had a tournament in San Diego, and so we drove to Las Vegas to have Thanksgiving dinner with David's family. When we arrived, they had thrown a surprise party for Brinley! We walked into a room full of wonderful, supportive, happy-for-all-of-us people. It caught Brinley off-guard and the first thing she did was turn around to walk out! We finally coaxed her in when she realized the party was for her. Thanks to those of you who made that happen, it was so much fun and we were touched.

Thanksgiving was a wonderful day. We have so much to be thankful for this year. We are still feeling so good about where we are in life right now, enjoying the blessings we have recently been given. Thanks Chance, Sole, Alexis, Caleb, and David for sharing this wonderful holiday with us. (Not to mention the food....mmmmmmm)

Seriously Mylee? Make yourself at home!
I just couldn't resist putting this one in there, David is totally in character.
Two beautiful girls. Brinley with Aunt Sole.

That afternoon, we were off to San Diego for some beautiful weather and my absolute favorite thing in the watch Taylor's team play soccer. My mom kept the kids in Vegas, so it was just David, Taylor and I. Our own little "older people" celebration. It was great to spend some alone time with Taylor, she doesn't get that too often. We left refreshed, and they played a good tournament, even though they didn't make it to the finals. They did show they can compete with the best in the nation. Go Avalanche!!

We didn't even take a picture of all three of us together! Lame!! Here's one of Taylor at the hotel.

Love this shot!

And NOW, as if we haven't already celebrated, we are getting ready for our little family celebration. My mom donated her timeshare to our family this year, and we are going to Park City for a whole week to stay in a beautiful resort and I know, Park City is very close to us, but we chose there because 1) none of us have ever skied and what better place than right here in Utah?? 2) we don't have to drive with all the kids for hours in the crammed car and 3) no gas money! I can't tell you how excited we are. I just want to scoop them all up and jump up and down shouting "We did it! We did it!!" because it was a family effort. This makes me feel like I'm doing that. We leave on Saturday. Thanks mom! Once we have our little family celebration, we'll start planning our BIG celebration in January. We want to celebrate with everyone else too!! More to come on that....

Life is just a big party for us right now, forgive us if we seem a little self-absorbed for a few weeks. We are just basking in our own little world over here. We'll be back, just need some time to take a deep breath and celebrate the beauty of normal.

On a more serious note, could I petition some prayers from you for a new friend? His name is Skyler and he has been battling the same type of cancer Brinley had, only everything that can go wrong has. Has has not left the Primary Children's Hospital since his diagnosis over 3 months ago. He started to recover from a life-threatening fungal infection, and has recently gotten worse again. He is back fighting for his life in intensive care. His mom, Crystal lost her husband two years ago, and it is just Skyler and his momma. I can't do much, but I can ask for prayers for them. Please take a few minutes to read about him, then hug your healthy kids tight and join us in the fight against this monster. We absolutely cannot allow this.

How do I begin to tell you how happy we are? How can I tell you what it is like to be done? To know that I never have to implement "steroid rules" again, or wake Brinley up to take her oral chemo, or watch them inject poison meant to kill her blood cells into her veins, or explain why most of the rules don't apply to Brinley when she is on chemo? Or to know that I will never, never have to look at her "chemo eyes" again and be helpless, or that in two weeks, we won't be gearing up again for chemo week, or that when we tell people she BEAT cancer we get a happy reaction instead of telling people she HAS cancer and getting a sad one.....I could go on and on.

Brinley has been running around like a little happy wind up toy. David and I have a theory that her oral chemo (that she has been taking for almost 2 years) had put her in a constant state of not feeling well. In the beginning of it she was nauseous a lot, but it eventually went away. We have decided she must have just gotten used to not feeling well because she is clearly acting very differently. She is just so happy. Brinley has always been a funny girl, but she has had us laughing more than usual, mostly because it is nice to see her so happy and silly.

Truly, we are stuck up in some cloud right now, I believe it may be number 9, and I haven't seen it for quite some time. It reminds me of right after I got married, how happy I was, or after every baby. The kind of happy that doesn't last forever, because then it wouldn't mean anything. You only get that kind of happy a few times in your life. This is one of them for us, and I am trying to bask in it before it leaves.....and gets replaced with a general "happy" that I will also be grateful for.

I am finding that many people don't realize what I mean when I say my daughter just went off treatment for cancer. I have been so anxious to shout it from the rooftops, and some of the reactions are "oh, cool." Eh? Did you NOT just hear what I said? I can't blame them really, unless you watch a replay of the last 2+ years how could you possibly know what that means? The battle that has been fought by a 2 year old, all the way to 4 year old. No, I couldn't possibly expect people to understand. So many times I keep it to myself. At the grocery store, when the checker says "How are you?" I want to reply with "I am superbly, fabulously, wonderfully, gloriously happy. My 4 year old just spent more than half of her life battling cancer. She has been to hell and back. We all have. And now, well now the burden has been lifted, and I realize how heavy it was because I feel so light I could float away." (I picture myself rising in the air as I speak.) I can't give that speech for an "oh, cool." So I usually just say great, I think that goes over better.

I can tell the difference you know. Between a person who is truly happy for us and someone who is just going through the motions of congratulations. Not that it even matters, but I love the sincerity I have seen too, from someone who "gets" what going off-treatment means to us. So many wonderful friends, family, strangers, who can catch a glimpse, even if you haven't been through it, of the marathon we have just run. I hope you know I am grateful for that.

We went to the HopeKids movie on Saturday and it was a full circle moment for me personally. Here's why: the very first HopeKids activity we went to was a movie, and before the movie, this man with a funny hat and a microphone (hi C.R.:)) had a little girl stand up who had just finished treatment. I had never experienced this before. Brinley was in the beginning phases of treatment and it was a hard place. I was moved to tears of happiness for her. It was the most sincere happy I have ever been for anyone in my life. And she was a complete stranger. Brinley got to go into two FULL theatres full of cancer families to announce her off-treatment news, and they cheered for her, and I knew that they were as happy for her as I had been for that little girl two years ago. Even if they are in a hard place....

(Just to get this out of the way, if you care enough to be reading this blog, I would group you in the "get it" group. Just wanted to set that straight in case you are sitting there thinking "which group does she put ME in?")

So we are just happy right now. Ready for the next phase of life, whatever that may be. And if a curve-ball gets thrown at us, so be it. We have this time, right here, right now, to be the happiest we have ever been and I will cherish and thank God for it forever. No matter what.

Last night Brinley took her very last dose of steroids. She is officially OFF TREATMENT!! As promised, here is the video of her last treatment.

Brinley's Last Treatment

Now we will give her a couple days to recover from this round, and for us to catch our breath and gather our thoughts and emotions. She has been very sick this time because her steroid dose was increased. She will easily crack a smile though when you tell her this is the last time she will feel like this!

We will find a way to celebrate this weekend as a family. Then.......we are planning a big par-tay in January to celebrate with everyone who wants to celebrate with us. We have a lot to celebrate.

For over two years, Brinley has been battling cancer. Yesterday was her very...last...treatment. The day could not have been more perfect. Let's get to the details first, get them out of the way. Her ANC was 2000 since she has been on hold for her oral chemo. Dr. Fluchel felt it was pointless to restart her oral chemo for 9 more days, soooooooo......when she is done with steroids on Tuesday, she is DONE!!! We were not expecting that, it was a nice surprise! We will be having our own little celebration once the steroids are done, next weekend probably. It did shorten my weight loss goal though! Instead of having 9 days to lose 2 more pounds, I now have 5. Anyhow, I have lost almost all the weight I gained while she was on treatment, 22 pounds so far! And I feel wonderful, all around wonderful.

She will have surgery to get her port removed in December and have her first "off-treatment" check, that we will be doing monthly for the first year.

Dr. Fluchel warned us going off-treatment can be very emotional and scary. We no longer have the "blanket" security feeling of the chemo keeping the cancer away. It is not correct, she does not have a higher chance of relapse when the chemo stops, but there is something comforting knowing she is getting chemo every day. So I'm sure we will be having all kinds of emotions. I just feel fluttery in my heart. It's like a nervous feeling, but happy at the same time. Maybe like before you get married, you are so nervous and excited at the same time.

Are you wondering why there were not any pictures of our perfect day? Well, we videotaped the whole thing, and in our hurry to make sure we got every little thing on video, we didn't take one picture. Not one. So look for a video in the next few days when we can get it together.

The nurses came and sang her an "off therapy" song and presented her with a gift, well, a slew of gifts really! It was such a happy day. We were hugging, and thanking, and smiling the whole day. Brinley had brought donuts to thank everyone, except she was fasting for her LP, so the whole ride in the car she said "those smell soooo good!" As soon as she woke up, she asked for one of her donuts back. Funny girl. They were happy to give her one.

They allowed us to videotape the whole LP (they sedate her, remove spinal fluid to check for cancer, and inject chemotherapy into her spinal fluid), one of the nurses did the video tape for us since we can't go in at the RTU. We had to get permission from the Dr and the anesthesiologist to do it and I was so worried they would say no way. I've heard of that happening. They were so nice and agreeable and had no problems whatsoever. I really want Brinley to have that someday, so I was so thankful they allowed us to do that.

I feel like we are in a dream, it doesn't feel real to me yet. I will have more to say this week, for now we are so happy this will be the last time she will do this, and sad at the same time. Not sure where the sad comes from, I guess we have been through a lot.

So what now? What do we do now, with no chemo and cancer and treatments to worry about? Now we watch her grow up.......

We are back on track with life finally! Brinley had counts checked on Thursday and her ANC was right at 500. So we did one more day of antibiotics Friday, assuming she was still climbing and would pass 500 in a day, and we were able to de-access her port. It is quite the inconvenience having a needle sticking in her port all day, so we were glad to get it out. She fell flat on it once, luckily it didn't do any damage, although it did hurt her pretty bad. She was able to go back to pre-school yesterday, as she had missed all week last week, including her class Halloween party.

She is still on chemo hold and we will see what her counts are at her LAST TREATMENT this week!!!! She will continue her oral chemo (if they decide to restart it) for another week or two after her last IV treatment. We have a kicking cancer's butt party (I mean off-treatment party) in the works.....gonna be awesome....can't wait.....

Brinley has out of the blue started complaining of back pain again. I am hoping it will just go away because it makes me nervous. I'll keep an eye on it, it's so strange that it would be suddenly back. Then again in the cancer/chemo world nothing is really strange any more.

I am back on track too, out of that mini-rut I got into after our hospital stay. In fact, I had a very intuitive friend come and jump start things for me. She came and cleaned my bathrooms and floors on Tuesday. It gave me just the boost I needed to catch up. I was able to catch up on laundry, which was getting to the no-underwear point (you know what I'm talking about). Her and I had a talk about accepting help, because it didn't take much convincing to get me past the embarrassment of someone else cleaning my bathroomsIf there's one thing I've learned, it's when you need help, and someone offers, DON'T TURN IT DOWN! I'm not talking about times when you really don't need help, so you turn down an offer. I am talking to those of you out there who are drowning, and when someone offers a hand, through your desperate gasps of air you choke out "no thank you, I'm doing just fine".

It reminded me of a story:

While out to sea, a large boat became shipwrecked and there was only a single survivor. This man prayed and asked God to save his life. Soon thereafter, another boat came by and offered the man some help.

"No thanks," he said. "I'm waiting for God to save me."

The men on the boat shrugged their shoulders and continued. As the man became more deeply concerned, another boat came by. Again, the people aboard offered this man some help, and again he politely decline. "I'm waiting for God to save me," he said again.

After some time, the man began to lose his faith, and soon after that he died. Upon reaching Heaven, he had a chance to speak with God briefly.

"Why did you let me die? Why didn't you answer my prayers?"

To which God replied "What more did you want? I sent you two boats!"

What I am trying to say is that God works through other people most of the time. If you are on your knees asking Him for help, and when He sends it and you are too embarrassed or prideful to accept it, how many more times do you think He will send it? The day after we got home from the hospital some members of my church offered to bring dinner. I accepted that right away too. Then I was on my knees that night thanking the Lord for sending the help I desperately needed. (And thanked them of course!!) And the people who have helped over the last couple years (you know who you are!), thank you for being in tune enough to know when you can help answer a prayer. We will all have our opportunities to serve and be served. I prefer to be on the serving end, but we can't be in that corner all the time or who would we serve? Nobody would need it right? So let's recognize the difference, swallow the pride, and let people be the Lord's instruments. It does not make you a mooch, or weak, or pathetic, or helpless. It makes you humble. And grateful.

This is turning out to sound like a lecture. Let's face it though, I've had two years to practice accepting help when it is needed. It is a lecture I've earned the right to give :)

Moving on.....Halloween was great this year. The first party was the Make A Wish trick or treat party. Mylee had a cough so she and Taylor skipped that one, but Brinley and Jade loved it. Brinley was dressed as a cat and Jade was a ballerina. Brinley switched costumes for Halloween because she wanted to be a witch. Actually it may have something to do with this funny story:

Brinley has been obsessed with smell the last year or so. She wants her hair to smell good, she wants us to take a shower if we have bad breath, if she needs one of us in the bathroom while she is doing you know what, we have to stand in the far corner "so you can't smell me, because then you will throw up." If I am cooking something, she tells me if it smells bad or good. If I am wearing perfume, she will just sit there and sniff me sometimes. I don't know why her sense of smell is so much more heightened than others, but she likes things to smell good. Anyhow, her kitty costume had a white tummy. It must have looked a bit like a skunk, because one of the staff knelt down to her and with a big, friendly smile said "are you stinky?" What I would give to capture the look on Brinley's face when she said that. It was HI-LA-RI-OUS. Here she was expecting this woman to come up and tell her how cute she looked, and she tells her the one thing that would mortify Brinley, that she is stinky. I am laughing just typing this. Needless to say, she didn't want to be a kitty any more, and she made an adorable witch too.

Well, that's it for now. This is a big week for us. Thursday will be her last treatment, and while I am excited for that day, we will still have to get through the week of chemo, the last week of chemo. How we got to this day I have no idea, it is all a bit of a blur.

Signing off from the never-a-dull-moment Torres household, thanks for checking in!

Make A Wish Halloween Party (Brinley's costume #1)

Can't have Halloween without pumpkin carving, even if it is on Halloween DAY! Procrastinators we are!!

Brinley's costume #2. Scary, but not stinky :)

Pretty ballerina Jade.

Gangsta Taylor. Can't see the gold chains though...

Mylee!! (the best picture we could get out of her)

We are recovering in every sense of the word. Brinley was released yesterday when her ANC went up to 100. That is still very low, but it shows an upward trend so they felt comfortable sending us home. She will need to be on IV antibiotics until she passes 500, and home health will need to come and check her again on Thursday. The onc again suggested a neupogen shot, but I still would like to see what she does on her own. I have a feeling by Thursday she will have increased even more. So we are holding all oral chemo until counts recover. They left her port accessed so we can administer the IV antibiotics and it is like we are in the beginning again, flushing the line and administering medicine, the same way we did when she had a broviac line before she got her port. When she walked in and Jade saw she was accessed, her eyes got huge and she said "She got her line back?? How?? Why??" I think she thought we were starting over again too!

The second part of recovering is un-spoiling. Brinley has had the spotlight for 5 days and it shows. She was able to order whatever she wanted on the menu for breakfast, lunch, dinner, snacks. Everything she needed she got. There were no sisters to fight with or share the attention. So coming home after that has been very difficult. We had several tantrums yesterday (starting at the hospital) and some today. It is frustrating for all of us.

Next part of recovering is David and I. David missed too much work on a week he could NOT miss work, so he is spending all his awake hours at work. I missed too much work too (laundry, housecleaning, etc.) and I am trying to catch up, except when you spend a few days sitting in a hospital room with nothing to do but read, eat, play games, sit, your energy level significantly decreases. So I feel as though I have lost all my momentum and it is taking a while to get it back. I feel sad, not sure why, it was just 5 days. Maybe it all somehow came back to me, the shift to survival mode, dealing with never seeing David or the other kids, never getting things done, missing out on school assignments and homework. It is just exhausting, even for a few days. So I am just making this week recovery, trying to regain the momentum I had just last week....a friend of ours said this is cancer's one last sucker punch because it knows it's on it's way out of our lives. Fine then, get one last desperate sucker punch in. Then you're outta here!!

Brinley is still here at Primary's today. Her ANC continues to stay at 0 and we are really hoping it will come up at least a little by tomorrow. She has a little sore in her mouth and is having a hard time going to the bathroom, so we are giving her miralax to soften things up so she can go. I am a little worried about the mouth sore because I know with low ANC you can get sores through your whole intestinal tract that can be very painful. I have been worried about that for months because she has complained of pain during bowel movements for a while now, but always had a nice high ANC. The sore in her mouth is not very painful yet, just annoying her because she said it feels like a "bump", but it is not affecting her eating or anything. We'll just keep an eye on it. The nurse said they take them very seriously with 0 ANC, but the strong antibiotic she is on should be helping out.

The doctor recommended giving her a neupogen shot today to move things along (a shot that stimulates your body to create new white blood cells) , but I decided I did not want to do that. I would like to see her body recover on it's own. The last time we did the neupogen her ANC skyrocketed in 2 days, then fell again. I just didn't like it much, plus my regular onc said he is not a huge fan of neupogen. It can cause fevers and some other issues. He said he only recommends it if there is something major they are fighting, but with a negative culture and still no fever in over 24 hours he said it is not necessary. It was recommended by a different onc, who I also trust, but you just get different opinions across the board. We decided to wait at least one more day and decide tomorrow.

Dr. Fluchel was scratching his head as to why she would have crashed like this. It seemed strange to him, but he said a possible virus could be the culprit. Her red blood is also borderline transfusion, so they left it up to us to transfuse today. We decided against it since she isn't symptomatic and is happy and feeling fine. If it continues to drop tomorrow we will do a blood transfusion. Her platelets also dropped, but not low enough where she is at any risk. They are just slightly below where they should be. We didn't touch her chemo last visit,and her ANC was 4500. Thank goodness Dr. Fluchel decided not to increase her oral dose of chemo.

We were hoping for a nice smooth landing coming off-treatment, but it looks like Brinley's body decided on more of a crash landing. Oh well, at least we are landing, less than two weeks for her last IV treatment!!

Will update again tomorrow, maybe from home! They are considering just sending her home with IV antibiotics since she is fever free and nothing grew in the culture. Thank you for your thoughts, well wishes, prayers, encouragement. We appreciate it so much.

Brinley was released yesterday morning from St. George's hospital, so David and Brinley drove home. At 4am she got another fever, so she was directly admitted to Primary's and is there now. Her ANC is still 0. I'm not sure how much longer they will keep her, the fever went away and has not returned yet, so tomorrow is a possibility if her counts begin to rebound a bit. If you are unfamiliar with ANC, that stands for Absolute Neutrophil Count, and gives an idea of how her body is equipped to fight infection. The number comes from a combination of white blood cells and neutrophils (the white cells that protect the body against infection by destroying bacteria). Her neutrophils are 0, which means there is nothing in there to fight bacteria, and even a normal amount of bacteria inside her body can become dangerous when there is nothing to fight it.

A normal person's ANC would be somewhere around 5000. Anything under 500 is considered neutropenic and in the danger zone for infection. They are giving her a very strong antibiotic to counter her inability to fight infection, but the culture still has not grown anything, so it doesn't look like that is the culprit. But we will need her marrow to start making those important cells again so she is out of the danger zone.

Other than her lack of white blood cells, David says she is feeling fine. Talking non-stop and happy as can be. The rest of us just arrived home from a long drive from Las Vegas. I had to get my first Monster drink ever because I was running on 4 hours of sleep and needed to make it home without falling asleep. It did the job, I didn't get tired at all, in fact, I may be up all night.

I had a knot in my stomach all weekend, so I am glad to be home and closer to Brinley. I will be going in the morning to stay with Brinley while David goes to work. I will try and update tomorrow, and hopefully it will be good news.

We appreciate your prayers so much. Hospital stays are very difficult on our family.

Oh, the irony of this story with my last post! Taylor had a tournament in Vegas this weekend, and right before we left Brinley had a low grade fever. We decided to go anyway, knowing that whatever we decided would probably be the wrong decision. And, you got it, wrong decision. Does Lagoon sound familiar? Did we learn our lesson? Nope.

By Cedar City she had 101, so we put in a call to our hospital and were told to go to the nearest ER. We went to the ER in St. George expecting to be given the antibiotics and be on our way, we had arranged for a teammate to stop by and pick up Taylor so she would at least get there. Well, doctor was not my favorite person on earth, and asked questions like I should not have even been there and was wasting her time. "She didn't really have a temp when you got here. I am going to order another temp check" (mind you the thermometer was sitting right next to us). Thirty minutes later, temp check shows almost 102. Nobody listens to me when I say the nurses never do it right because Brinley has small ear canals and if you don't pull back her ear you'll get an inaccurate reading. So, once it was taken correctly it was most definately a fever. Anyhow, next question: "What made you decide to even check her temp?" I really have to answer that? She was feeling sick, she has cancer, she felt warm, take your pick. She just seemed annoyed with me, and I was annoyed with her. Then they tried to take two cultures from two different sources, port and arm. Mama bear said absolutely not, we have NEVER had to do that for the DOZENS of fevers she has had, and mom will trump doctor this time. Oh, turns out you can get both cultures from the port. Thank you very much. That will work.

Anyhow, ANC was 100 last night, direct admit. All of a sudden the doctor was concerned...hmmmmm. NOW it's okay that I came in. And what the???? Her ANC hasn't been that low in almost a year!! The hospital was really great, rooms were big and clean. We have some friends who opened their home to us literally last minute. Thank you Eric and Ashley!!! I stayed the first night, then David stayed there at the hospital and I came to the tournament for Taylor with the kids. This morning ANC was 0. Which means she has absolutely no way to fight off infection, so we are waiting for the culture to come back. There are no other symptoms so I am a little concerned it is a blood infection, but I've certainly been wrong before. I think they are going to let David drive back to SLC to be closer to Primary's in case the fever comes back. I'm just waiting to hear.

Did we really think we were just going to go out without a little drama? No, that's not Brinley's style....drama is her middle name....can I scream now?

Brinley is feeling better this week, although the steroids seem to be lingering in the form of roid rage, Brinley has been really difficult the last day or two. I always start thinking it's "her", then two weeks after steroids are done she returns to her normal happy-for-the-most-part self. She is so excited to have only one treatment left. She keeps punching the air and saying "I BEAT cancer! I'm so tough!"

This post, however, will be about yours truly :) Me.

It's always hard to write about what I'm doing, I guess I figure you don't come here to hear about me. But I think this one is post-worthy.

It is time to reclaim my life from cancer. I'll take that back, thank you very much! Cancer has been the focus of our lives for two years. The centerpeice at our table, the elephant in the room, the topics of our discussion. Cancer, cancer, cancer. It's time for that to change, and it will be a welcome change for us.

The first thing I will reclaim is my health. Since Brinley's diagnosis, I managed to put on 24 pounds. Twenty-four pounds!! That is more than I have ever weighed in my life! And so I avoid looking at mirrors, and pictures, anything that shows what I really look like. I mean, really, when you are trying to focus on saving your child's life, who the %!&@ cares what your backside looks like?! Right?? The saving her life thing, that kinda takes over...

I can't even describe the dark places we have been, and I was certainly last on the list of people to be taken care of (along with David, who tied for last place). So here goes.....I've already lost 18lbs, and plan to be back to my pre-cancer weight by the time Brinley is done with treatment (6lbs to go). Then I will have just a few more pounds to go from there. Why am I telling you this? Why am I not embarrassed to put it out there for everyone to see? Because I don't believe that a little extra weight makes me less of a human being. Why would any decent person think less of me because I gained 20lbs while my daughter was in treatment? (Notice I said DECENT person) And if the non-decent people do, so what? And because it makes me so happy to be in a position where I can exercise and take care of my body again, I wanted to share it. I love to exercise, and that part of my life was severely neglected, and I missed it so very much. So much that the first few times at aerobics, I was choked up because I was so HAPPY to be there! And I have some wonderful friends to walk with every day, exercise PLUS girl time, what more could I ask for!?

The second item of reclamation....(is that even a word? Dad?) MY HOUSE!! Cancer took over that in a jiffy too! Now that Brinley is in pre-school I actually have 6 hours a week to myself (naptime for Mylee) and that time will be used to put my house back to functional. It will be a process, piece by piece, but I'll get there. I know I'll always have my off days, but I am looking forward to "off" days as not being EVERY day.

Baby steps!! Those are the first two most important things I am working on. I am in a good place, a very good place. I feel like I'm recovering from a trauma. I suppose that is exactly what I am doing. Recovering, and reclaiming.

Brinley went to clinic last Thursday for her SECOND TO LAST injection of chemo. It went great, we talked about what to expect off treatment, she got her chemo, ANC was 4000 and we were out in time for pre-school! Although I am not excited about her counts being so high, they will not be increasing her chemo this month.

She had a dance planned out for her doctor, but got shy once the time came to perform. So the oncologist told her if she did her dance for him, he would do one for her. Well, she did it, and I was holding him to his promise. So we got a little break dancing from Dr. Fluchel, and it was the highlight of the visit! Now THAT'S what I call a good doctor! A grown man dancing for his 4 year old patient, love it!!

That night I got to go meet some cancer mom's at the hospital. We went to the cafeteria and one of the mom's brought in pizza (REALLY good pizza) and we just sat and got to know each other for a couple hours. A couple of the mom's had their kids in-patient and were able to slip away for some adult time. It was wonderful, and there is a bond between cancer mom's that I could never describe. I guess because we just know, without even having to say it, we know what it's like. One of them, Chelsea, shared this on her blog and I loved it, not sure who wrote it:

I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.
Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran , bald heads
Are always parts of our conversations,
As well as roidrage, tears, and meltdowns…
We always know where the closest puke bucket is,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We can drive to the hospital ,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you, With our eyes closed at any given time.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand ,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And on maybe only one meal a day .
We know the names of up to 20 different drugs,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day,
Seven days a week.
We are used to not always looking our best,
Hard to do with only a few hours of sleep .
Make up , hair styling, skirts are words of the past.
We have become addicted to texting ,
hospital, clinic, home, wherever…
We talk sometimes at all hours of the night ,
We know we can count on someone to be up.
Then for one of us , the world stops .
She has to walk away, broken.
This job is over .
The job is over, but the fight is on.
Remember , I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen, we vent, we cry, we laugh together.
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice,
Sometimes we win, sometimes we lose,
But never are we defeated.
We are not nurses
We are not doctors,
We are cancer moms…

I loved them right away. They are beautiful, compassionate, caring women I am privileged to be a part of.

Now, we are just trying to get through chemo week, but it has been much better than last month. She feels quite sick in the evenings, but the daytimes have been okay. She had to miss the LLS Light the Night Walk, and her favorite mascot from the Lemonade Stand, Grizzbee was there. He sent me a very nice text after the event saying that he had thought about Brinley when he was invited to come to the walk, and had been looking for her hoping she was there. When he found out she was sick, he said to give her a hug, and you should have seen the smile on her face when I told her that!!

She is a trooper, and has done this way too many times these past two years. I started video taping a little of what she goes through. I don't know why, other than I feel like I will be glad I did it someday. Someday we will look back on this and I just want to have as much of it as I can. There is almost a weird fondness, that is the wrong word, but it is an emotion I haven't a word for, that I feel about these chemo rounds. Like there is some kind of bond formed during the hardest times of life, between those suffering through it, and that bond is being strengthened during those moments. So when I say fondness, it is that bond I am talking about that brings a "fondness" to my heart. I recently saw a mother and teenage daughter embrace tearfully during a last chemo visit, and it was the most beautiful thing I had ever seen. Two women, mother and daughter, one going through it, the other wishing she could have taken her place, bonded through the tears, heartache, and despair in a way that can only happen with those things. There IS beauty in this journey, amidst the heartache. I see it every day.

I am FINALLY recovering from our "fun filled" weekend, if you call my previous post fun. I pick up where I left off, with Taylor coming into our room at 3am and had just thrown up. So with 4 sick ones, we decided we BOTH needed to stay home from church with them. The guilt I felt for pawning our Sunday school class on another teacher, wondering if we could have just had one of us go, quickly vanished when 15 minutes into our church time Mylee threw up all over our bed. I rushed her to the tub, David did the clean up (I have a VERY good husband BTW). I got her all washed up. David comes up with the idea to let her play in the tub since she was happy. I have one word for you. Hindsight. A few minutes into the "play in the tub" time she has diarrhea. In the tub of water. I really had to laugh at that one, it was bad. I took care of Mylee, again, and David was on clean up, again. Did I mention I have a very good husband? He is a great disinfect-er.

That night, who comes knocking, but Mr. Fever. 102.3 Mr. Fever. Of all four kids, Brinley is the only one with a fever. I have to tell you with all the ER trips, I honestly am covering my eyes as to what this hospital bill will end up being when all is said and done. I will take a peek in a couple months, when treatment is over. For now we just make our minimum payments, that tend to go up every month, and be grateful that our daughter is still alive.

I call the on-call, really believing this time she would not have us come in, since all our other kids were sick and I thought maybe it could wait until the next morning, when we can just go to clinic and save 4 hours and $200. My conversation went like this:

Me: Brinley has a fever again today, but all of my kids are sick so I am sure it is just a bug. Her 24 hour coverage (the antibiotic she got the day before at the ER) was up at around noon, but I was hoping we could just wait until tomorrow if she still has a fever. (I think my regular doctor may have agreed to this)

On-call dr: Do all of your other kids have fevers?

Me: (sheepishly) Well, um, no, but you don't know Brinley. She gets a fever with everything.

On-call Dr: Well, we have been seeing a virus that has come WITH a bacterial infection lately, so I don't want to take any chances. Better......

Me: (interrupting) We'll be right there.

David was off to the ER, got home around 1am, and the next morning she was fever free. And nothing has grown in the culture. Shocker. Am I sounding bitter? I don't mean to, I am just so very ready to be done with this part of life. So ready.

Some Torres funnies:

We were going on a walk and we walked by a house all decorated for Halloween.

Brinley: Mom, is that a huntin house?

Mom: Yes, they made it look like a haunted house for Halloween!

(next house, that is NOT decorated, but was pretty run-down)

Brinley: OOh, that's a scary huntin house too!

Mom: Shhhhhhh! That one is not a haunted house!!

Brinley: Well, why does it look so scary??

I pretend I don't hear her and pick up the pace a bit.

Two days later, with Daddy:

Brinley: Daddy, me and Mommy saw a huntin house!

Daddy: What? OH, you mean a haunted house?

Brinley: No Daddy, a huntin house.

Daddy: No honey, it's called a haunted house.

Brinley: (never one to be admit to being wrong about anything) DADDY! IT'S A HUNTIN HOUSE!! You say it.....HUN......TIN......HUNTIN!

Daddy: Okay Brinley, a huntin house.

You would agree with her too if you saw how serious she was! So funny. This little munchkin arguing with her Daddy about how to pronounce haunted.

Again, I say, thank goodness for laughter. I think David and I would be divorced by now if we didn't both know how to find the humor.

Unbelievable. If it didn't actually happen, that's what I would say. Here's the story:

Part of our Make-A-Wish trip included a "passport" we could use at amusement parks across the US that expires one year after our wish trip, which is coming up very soon. One of those parks is our Lagoon park here in Utah. The kids have been sooooo excited to go to "Magoon" (as Brinley calls it) and the day finally arrived (after pulling teeth from the guy in charge of it) for us to go. We woke up with all kinds of excitement from everyone. TODAY'S THE DAY!! MAGOON! MAGOON! FUN, FUN, FUN!! MUUUUUAAAAAHHHHHHHAAAAAAAAHHHHHHHAAAAAAA, THAT'S WHAT YOU THINK!

We got Mylee out of bed to find out she had thrown up overnight, and slept in it. Hmmmm, could she be sick? No fever, ah well. We're still going. Next Brinley gets up, tummy hurting. Throws up in our bed. Hmmmm. Today is the only day we can go. What to do.....we decided if we both agree to do something we probably shouldn't do, then it's probably okay to do it. I know, right? Mistake number 1. We decide we are still going to Lagoon anyway. Nothing will stand in our way of FUN. Well, except a fever. From the QUEEN of fevers. Mylee, no, she's fever free. We get to Lagoon to discover Brinley has 102 fever. Only Brinley, because everything comes with a fever with her. I call the on-call to plead for a solution, since we would lose our chance to have a great day! No, you still must come in. All the fun in the world doesn't change that your kid has cancer, and a fever is serious business. I ask if she can hurry along the ER today so we can give her some tylenol and get back to our fun, sick or not. (I know, some of you are tsk'ing me, but it was our one chance this year to go to Lagoon!). David leaves me and the kids at the park and heads to the $250 ER. The same $250 ER we went to last week. We try to make the best of it, so I put Mylee in the back of the double stroller and Taylor and Jade hit some rides. Not long after David leaves, Mylee starts throwing up. Massive amounts of vomit, like the movies where crap just flies straight out of the mouth. The first time, she manages to miss her clothes, but soaks the seat of the stroller. Ok, I discreetly clean it up as best I can. I put her in the front, since wet wipes don't do much in getting the smell out of the stroller seat. A few minutes later, an adult size portion of food comes up again. From the belly of an 18 month old. This time, no such luck on the clothes. They are drenched as if she had bathed in vomit, along with the front seat of the stroller. I get her to the bathroom, wash her clothes out with hand soap, hang them to dry on the stroller. She's sporting a diaper. I smell vomit throughout the rest of the day, in fact I believe it is permanently burned into my nostrils. That's my side....

In the meantime......

David arrives at hospital. They are so very quick to get him in, they knew they were coming, had a room clean and even ordered the antibiotic before they got there. Wow, they were prepared like never before. Muaaaaaaahhhhhhaaaaaaaaahhhhhhhaaaaaa. You really thought they would go against the ER handbook that clearly states NO ONE will be released without doing their fair share of time at the ER? Oh, they made him think they would do it. Always pretending to be hurrying, having the doctor come in right away. Getting the antibiotic started within an hour of them stepping through the doors. So can someone PLEASE tell me why it was FOUR HOURS later that they came back to the park??? Why, oh why, oh why do I let them fool me into thinking it will be fast every single time! Oh, we'll have you out real soon....let me just go find a heparin flush. Oops, we need to order it from the pharmacy. EH? Since when is there not a HEPARIN flush lying around??? And the pharmacy will take about an hour to send it. Here's to hoping your BLOOD DOESN'T CLOT UP THE LINE in the meantime!! Bahhhhhhh! The sick and wrong side of me actually pictures them hehehe'ing outside our door, rubbing their hands together at how they've fooled us again.

Here is my problem. Really? Really? Brinley Torres has dealt with so much CRAP these last two years. We are having a fun freaking day, and I would really appreciate it if you would all just cut the kid some slack and actually TAKE only the 45 minutes to do 45 minutes worth of stuff. Give her some tylenol, get the stupid culture and CBC, give her the antibiotic and send us on our merry way. JUST THIS ONCE!!! For Brinley. I KNOW it is possible. Oh, I love you people dearly. I really do. The nurses and doctors there, I adore you. I am normally so very patient and understanding. We have had dozens of 6 hour ER trips where we have smiled, laughed, joked around, always being patient. But this time, well this time it was not cool. It was just not cool. Okay, my ER rant is over.

So they finally get back to the park at 4:30 or so. Taylor and Jade had a blast together. I missed all the rides I wanted to go on, and I LOVE rides, but I just resigned myself to make sure the girls had fun, which they did. David and I couldn't help but laugh at how NOT surprised we were that things had gone the way they had. And Jade threw up on the way home. The End.

Our first Grand Stand was a great success! We were so worried, but everything went smoothly and we were able to have a wonderful time!

There is so much to tell, I just don't know where to start!! We had over 60 volunteers, and I just can't thank them enough. We had a great DJ donate his time, and made everything so much fun. Then we had Grizzbee, the Grizzlies mascot, come join the party, and brought another mascot, Willie, with him. Brinley fell in love with Grizzbee, I mean when she cried about something, she ran to Grizzbee for comfort! She wanted him to go down the slide with her again, and again, and again! When he left he sent me a text about how touched he was with Brinley and how much he enjoyed being there. When I asked Brinley what her favorite part was, she said "Grizzbee!" It was really cool. We may even have to become hockey fans to take her to visit him!

We had so many people come to show support, many we knew and many we didn't. I tried to ask people how they heard about it if I didn't know them. One man donated $200.00 from his construction company, so I asked him how he heard about us. He said that someone had left a flier on his door. How cool is that? Talk about compassion.

It was so cool to see the beginning of something that I feel will be really big. This was our first "grand stand" year, when we didn't really know what we were doing yet, and we all felt like it was a great success. As of today, our total raised is around $6300.00! I know our goal was $10,000, but are really feeling good about what we raised our first year. We multiplied last year's by 5!! Look out $10,000, we're coming for you next year!!

A big thank you to all of you who donated online. You made up $2700.00 of our total! That is huge and shows that even if you don't live close to us or couldn't come to the stand, you can make a difference in our efforts to rid the world of childhood cancer. You can still donate online if you missed it at

Another thank you to the donations to our stand, we had cookies donated, a bounce house, the DJ, prizes, supplies, items to sell, rentals. It wouldn't have happened without your donations.

The best part in my eyes was seeing all these people coming together against cancer. We all have our stories, so many people have been touched by it somehow, and we know how to fight back! There were gold ribbons everywhere, it was a great feeling. We are still exhausted from it, but still basking in how amazing it was. It felt so good to be kicking childhood cancer's butt, one cup at a time :) More pictures to come when I get the rest of them...

Brinley and Grizzbee sliding together

Think she's happy?

Our AWESOME volunteers! The morning ones were missing, so add about 20. That's a lot of people who wanted to help!

The committee counting the money we raised!

I haven't a way to express this post, so that will be today's title. Wow.

Our family was invited to go to the Huntsman Cancer Institute to present grant money to two research leaders with a rep from Alex's Lemonade Stand today, who flew out from Pennsylvania to come to our stand and deliver the grant money. They awarded them $300,000.

It was a full circle moment for us. The researchers were so kind, and sincere, and grateful for what we are doing. We got to thank them, and they got to thank us. We recognize how important they are, and they recognize how important we are, in our own ways. We saw that we are all just human beings performing within our capacity to perform, trying to fight this beast together. Wow. Right?

They work every day to better the treatment, to improve survival rates, to make the chemo less harsh, to find out why our kids get cancer. Every day. Fighting cancer. Just like Brinley, only on a different level.

The NCI (National Cancer Institute) funds cancer research according to population affected. When you compare childrens cancers to adult cancers, you can guess who gets the bulk of the research money. Frustrating, but reality. This is truly a grassroots effort. If you give $10, or $100, or $1, and we have enough people give whatever donation they can, we can meet our goal of $10,000. That $10,000 doesn't do a whole lot by itself, but if people do that all over the place, you get to award grants to the most promising research of amounts like $300,000. From LEMONADE STANDS! They have raised over $30 million for research from lemonade stands.

David and I have the passion. We can put this together just by pure adrenaline from watching our child suffer through this, not to mention the children we see so often (ok and a REALLY dedicated and awesome committee). But I can't give $10,000. My goal is to share our story enough to help somehow, to get someone to give a little to a cause that is the #1 cause of death by disease in children. Childhood cancer.

Bottom line is this: I WANT TO KICK CANCER'S BUTT!!!!!!!!!!!!!!!!!!!!!!!!!!!! Let's all do it together!

Jen, the rep from Alex's Lemonade Stand presenting the checks to the researchers

At least Taylor is smiling.

My fave, Brinley with the researcher who just got a $200,000 grant for Acute Lymphoblastic Leukemia research, which is her cancer. The one who wants to save lives, and the one whose life is threatened. Love it, absolutely love this picture.

We got a tour of the Huntsman Center. They had rows and rows of research like this. Awesome.

Remember, you can donate online at You can also text to donate and automatic $10. Just text "Lemonade E67204" to 85944 and it will automatically be charged to your phone bill. How easy is that, huh??

I will resist the urge to talk lemonade and just give you an update on Brinley, with another one soon to follow on other stuff....

Brinley is having the worst round of chemo she has ever had. For some reason she is especially sick and it has been a very hard few days for her. It just breaks my heart, really. She won't play, she won't laugh. She just wants her mommy to hold her, and if I am not holding her, she is moaning at my feet. This morning was her last dose of steroids, so I expect tomorrow she will be starting to feel better.

I took her to aerobics with me and she just watched me with a frown on her face. A little girl tried to talk to her and she just ignored her and looked away. Then she laid on her jacket and watched the other kids play and have fun. I left early, and in a weak moment as we walked out, I said "it's not fair, is it?" I have never said that out loud to her before, and I probably never will again. I have always tried to get her through it without making her feel sorry for herself. But at that moment, that was all I had for her. It's not fair. I should count the times a day she tells me something on her hurts, or she doesn't feel good. It would be close to a hundred these last few days. Her head hurts, her stomach hurts, her legs hurt, her feet hurt, she feels like she is going to "puke". And all I can say is "I know", and give her a hug. This picture was taken today, and this is the sweet, sad little face I looked at all day.

One thing that has been sweet is that even though my girls fight A LOT, they come through for each other when it matters. Jade is a good little caretaker of her sister, asking me often how many more times Brinley has to get chemo. When Brinley got that high fever last week, the first thing Jade asked when she got home from school was "did Brinley have bacteria in her blood? Because I feel bad when she is really sick, and I don't want the bacteria to get in her blood." I knew she had thought about her sister that day. So sweet.

And then I start to think, this will all be a memory soon. It will get more and more distant. Only two more treatments. How will I manage to keep it there, fresh in my memory, so that I can continue to fight? I have to find a way.

That's right, we are sporting gold all month for Childhood Cancer Awareness Month. I wanted to share some facts about childhood cancer.

  • Around 12,000 children are diagnosed with cancer each year in the US. Around 200,000 children are diagnosed each year worldwide.
  • One in every 330 Americans develops cancer before the age of twenty.
  • On the average, 36 children and adolescents are diagnosed with cancer everyday in the United States.
  • On the average, one in every four elementary schools has a child with cancer. The average high school has two students who are current or former cancer patients.
  • Cancer is the leading cause of death by disease in children under the age of 15 in the United States.
  • Childhood cancers affect more potential patient-years of life than any other cancer except breast and lung cancer.
  • The causes of most childhood cancers are unknown. At present, childhood cancer cannot be prevented.
  • Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.
  • Despite these facts, childhood cancer research is vastly and consistently underfunded.
As I watch Brinley this round of chemo battle things out inside her body I am faced, once again, with a helpless feeling, with no way to take away her pain and sickness. I believe in the advancement of medicine, and I believe God gave us the tools to figure this out. Let's get there! As quickly as possible. What will the day be like that we can say each child with cancer will live! Will be able to have children, a family. Will have a healthy, strong body without disabilities from the chemo. They deserve that. Brinley is sleeping in my arms as I type because she is too tired to play. She couldn't decided if she wanted to go to her friends house, or pre-school, or sunday school because she is too tired and sick. No child should have to do this. It isn't right.

We can't wait for our Alex's Lemonade Stand. We are hoping to have a good turnout, you just never know. As we have planned this event, I have realized that there are people who truly care, and people who just don't. It is interesting to watch from one person to the next. We have had people call us and ask what they can do to help spread the word when they hear about it. Or making a donation without batting an eye. And we have had people look at us like we are trying to sell them a Kirby vacuum. I'm not sure what the difference is, why one person is so annoyed to have to listen to us talk about childhood cancer, and the next person is filled with compassion for these kids. I'm sure anyone who has tried to advocate for a group of people can relate. We have had to focus on the good people out there so we don't get too discouraged, because they are out there.

I remember last year, the man who lingered around our stand for a while, then finally wrote out a check for $1. None of us will forget that donation. We all wondered what it took for him to give us that money, and what was going through his head as he debated whether he would contribute or not. Anyhow, we have had some pretty amazing experiences and are ready to bring this cause to the community!

Remember if you can't make it you can still donate online. Click on the sidebar and it will take you to our donation page. Or if you aren't much for making online donations, you can now text to donate. It is the coolest thing, you just text "Lemonade E67204", to 85944 and it will be an automatic $10 donation. Text donations are billed directly to your cell phone provider and then paid to Alex’s Lemonade Stand Foundation. It will show up in our stand total, but we won't know where it came from, so let us know so we can thank you!

Brinley is feeling better, at least her fever is gone. She is dealing with chemo now, and her cough is still yucky, but she did not get a fever yesterday or today, whew.

Brinley got a fever last night and we made the trip in to the ER at 9 or so. Her counts were great and so they gave her the antibiotic, took a blood culture and sent us on our way around 1am. She was already scheduled for her chemo today, so we went in to clinic this morning. She woke up with 102 fever, but Tylenol brought it down to 100. Clinic went well, she got her chemo and we talked to the doctor. The only change this month will be she will no longer take the IV pentamidine. She got so sick last month during the infusion, they decided it was not worth it to put her through that any more. So our next and last option for this situation (these antibiotics prevent a particular type of flu that is very hard to treat in cancer patients) is to give her dapsone every day. It is only for 2 more months, so hopefully this one works out. We are also going to check her again to see if her counts are still high (4200 ANC today!) so that we can increase her chemo. They don't like to do it when the kids are sick because blood counts can do wacky things when you are sick.

We will hold off on steroids until Saturday to see what is going on with her sickness, but she still got her vincristine. Later this afternoon her fever spiked to 105 when she fell asleep and she was very sick. This mom no likey 105 fevers. I managed to get the fever down again, and I am hoping tomorrow will be better and we will not have to make a trip to the hospital. If things go really bad tonight I would just take her in to the ER again.

She is coughing, and has been for 2 weeks, and it does not seem to be getting any better. It is a pretty nasty cough, I am pretty sure everyone at clinic breathed a sigh of relief when we finally left. I would be if some kid was hacking all over clinic, even with a mask on.

Soooo, that's the medical update on Brinley. Today was a hard day :(

I added some pictures to my last post of where were were two years ago this week. It's pretty hard to look back through those pictures, but I'm glad we have them. So scroll down and re-read the post with the pics if you have time.

As promised here are some current pics of Brinley. Good to see a lot of smiling lately! This is at Radio Disney when we got to do an interview for our lemonade stand.

Okay, a little cheezy, but still cute.

This is Brinley singing a song she learned in pre-school.

And there was a time I didn't even want to step foot in a park....

My point is that two years later, she is happy, feeling good (during non-chemo weeks!) and a normal little girl. Life is good.