It's been four weeks since Brinley's surgery, but I wanted to be sure to update here about the process.  First things first.  Brinley is a superstar.  She is amazing.  I am in awe of her, truly.  She took brain surgery like she was getting her tonsils removed.  I am going to give the details of the surgery in this post, however this has been an amazing spiritual journey for us and suffice it to say we have had some very personal experiences through all of this and I feel so blessed..

2/20/13 - Surgery Day

We had a very calm few days leading up to the surgery.  We all felt good about it and knew it would go well.  That all goes out the window however when you have to hand over your baby to a surgeon to operate on her brain.  Her other 4 minor surgeries during cancer she was only 2-4 years old, and taking her back to the OR was a much longer process.  This time she was all smiles, no nerves at all (although she giggles when she is nervous, so I'm sure she was nervous because she was very giggly) so they didn't give her any medications to help the separation anxiety.  They were running behind so they checked her out and rushed us to the waiting room.  Dr. Brockmeyer came out for a brief consult, said we will never know if it was caused by her cancer treatment because her spine looked normal, but it is possible, asked us if we had questions and that was that.  I felt flustered and could only muster up "I know you do this all the time, but we really love this girl.  Please take good care of her".  We wondered what he does to prepare to operate on a child's brain.  Does he get up, shower quickly because he's running late, rush into the hospital and just go to work?  Does he think or meditate first?  Does he utter a prayer?  Or is it just like David would log onto his computer to get started, he just starts the operation?  These were some of our thoughts.

The anesthesiologist came out and walked us down the hall to the OR doors and said this is where we part ways.  We expected it would be like her other surgeries, and it caught us off guard.  That was a good thing because I didn't even have a chance to cry, just a quick kiss and hug and she was gone.  They redid the waiting room and have areas sectioned off now, and I was so grateful for that.  We found a back corner and held each other for a few minutes and cried (well, I cried).  They told us it would take about 2 1/2 hours for the surgery, so David began the timer.  We couldn't read or concentrate on anything else.  The worst part was wondering what was happening the same moment as we sat waiting.  Had they cut into her yet?  Were her vitals okay?  What if she woke up?  How much was she bleeding while we sat there?  Would she need a transfusion?  Was her body handling the trauma?  Had he removed part of her little skull yet?  Had he removed part of her brain?  What do they do with it, just throw it away I guess?  What does it look like?  Time went so slow, every minute was an eternity.  Thankfully, Dr. Brockmeyer came out early, at an hour and 45 minutes!  Seeing him took my breath away and I couldn't wait another second to hear what would come out of his mouth when he spoke.  Please, God, let him say she is okay was all I could think.  The surgery had gone perfectly.  Perfectly.  She would not need to go to ICU, just to recovery and they would call one of us back when she woke up.  We gave a silent prayer of thanks and waited.  When I went back she was in a lot of pain.  It was hard to keep it together because she was just whimpering "mommy, mommy, my neck, my neck".  They got some pain meds in her and she closed her eyes, although she stayed awake because she was nodding her head when I talked to her.  She had blood dripping down her mouth from her loose tooth being removed and Vaseline all over her eyes so we cleaned her up.  I couldn't see anything because her hair was a matted, sticky mess behind her head.  I didn't even want to ask about it.  The nurse finally asked if I wanted to see it.  I carefully lifted her hair and saw where they had sewn her up.  I sent David a picture of it and of her.  It looked....gross.  Bloody and gross.  I just wanted to cry.  It was torture for him to not be back there, but I was so grateful he allowed me to go back.  I know it was difficult for him.  He is a very involved Daddy.

When she was awake and stable they moved her to her recovery room.  She was still in pain, but they finally got it under control.  Once she had some good meds in her, she was amazingly happy.  She was singing and laughing and being so funny.  She was moving much more than we thought she would be, and at one point she just sat up and about gave David and I a heart attack.  That first day was fabulous.

2/21/13 - Thursday

The next day was her worst day.  She was in a lot more pain since the local anesthetic in her neck had worn off.  They don't bandage the wound at all, so she was just trying to get comfortable.  The only thing that was comfortable was to lay right on the incision.  She said it didn't "bump" when she was laying on it.  She got up to go to the bathroom and did great with a lot of help from Dad.  We had a few visitors and that helped a lot.  Her nurse said she seemed so great we could try getting a wheelchair and going for a walk to the play room.  We went down there and she played for a few minutes, but then began having a lot of pain.  The rest of the night was bad.  We had avoided morphine until that point (I know, she is amazing....) but she was just hurting so bad.  They gave her morphine and she finally fell asleep and slept all night.

Two of Brinley's favorite things, a big pretzel, and grandma!

2/22/13 - Friday
Friday was a great day.  She was feeling a lot better and was walking a little by herself.  She was getting tired of the hospital and getting bored.  We were hoping to leave the next day, but she wasn't drinking and they would take her off fluids, and a few hours later she was feeling awful and they had to hook her up again.  Dr. Brockmeyer stopped by that morning and said she was doing unbelievably good, about 10x better than most patients with decompression surgery.  I believe this is because her medical innocence was lost years ago and she didn't have to experience that again.  It was a blessing that she was already used to poking and prodding and blood draws and IV's and pain.  I felt like she started ahead of the game than most children who have to experience the medical world for the first time with this surgery.  I was so proud of Brinley.  I don't know why this felt different than her cancer, I guess because she is older and can express herself more.  She was brave and strong during her cancer treatment, but I was amazed by her in a way I had never experienced.  She will not be brought down.  We can learn so much from children.  Not only Brinley.  It is a characteristic of children.  It tells us in the scriptures to be more childlike, and I thought I understood that fully, but I was able to see another angle to it.  She didn't let daily struggles get her down.  There was no moping or feeling sorry for herself.  She is bound and determined to be happy.  I love that about her.

She was able to take a shower, and as you can see she really needed it.  We tried to stay away from the site, but being able to get some of the gunk out of her hair felt so good.

2/23/13 - Saturday
Saturday she was walking around the room by herself.  Our biggest concern was not having access to IV pain medications if she started having a lot of pain.  She had not done well with the Valium and wouldn't take it, so pain was a worry since the muscle relaxer was important with her neck muscle pain. Brinley, however, was ready to go home.  We had been given the okay by Dr. B to go home that day, but David and I felt afraid to leave the security of the hospital.  By 1:00 she was practically begging and we conceded.  Home felt so good.

When she got home we had a visit from one of Brinley's besties, Kodiak of the Utah Jynx.  He has become like a part of our family (along with his family) and has always checked in on Brinley.  We love him.  It had been a hard day for her so it was the perfect time for a visit to lift her spirits.

2/27/13 - Stitches came out.  She was nervous but as always, very brave.  She didn't cry at all.

 2/27 - One week post-op.  Brinley had a few rough days.  There was a particularly sunny day where Brinley could not go out to play (she isn't supposed to ride bikes, run, jump, swing, etc. until she is cleared for activity).  She had a meltdown and was just so sad.  She cried and cried "I just want my old neck back!  The neck that was soft and smooth and didn't hurt.  And I could run and ride my bike and play with my friends!  I don't like brain surgery!"  It was a hard day.

3/5/13 - Two weeks post surgery

She got a virus that was a setback with her recovery and her mouth had been covered with sores and she had 4 days of very high fevers, but it passed.  Her neck looked like it had been a month.  They hardly shaved any hair so unless she has her hair in pigtails you wouldn't even see it.

Four weeks post surgery:  It has been hard.  She started school last week and did really well, but she is frustrated with progress.  She is still so tender all over her head and neck.  She is still having stomach aches, so we are moving forward with figuring them out.  She had her oncology visit and we are doing a "cleanse" this weekend to get everything out and see how she feels after that.  She has lost 3 pounds, which is a lot when you only weight 42 pounds.  I am hoping as she feels better and returns to full activity she will seem less frail and thin.  The headaches have still been around, though not as often.  She has felt kind of crummy the last couple days.  It is discouraging, but we have to remember to be patient.  She started out so fabulous that we had very high expectations for recovery.  This will be a long road and it's very hard for her to be patient.  The novelty of having a cool scar has worn off and she's not happy about the idea that it will always be on her neck.  I know she will get used to it.  The nice weather had been very difficult for her because her friends can go play outside and she has so many restrictions it's not much fun for her to be outside.  She often says that she wishes she didn't have brain surgery during the times she feels discouraged.  Then sometimes she is so funny, while doing homework when she figures something out she'll say "I can't believe a girl who just had brain surgery can do this."

Although she complains about it, she does love to show off her scar to anyone who visits.  It's a big scar, but it's in a great place.  And as my friend Crystal says, "Never be ashamed of a scar.  It simply means that you were stronger than whatever tried to hurt you."  She has a few to prove that.  She is a strong girl and I can see how her experiences are shaping who she is.  She has had so many challenges, and in so many ways that is just hard to watch.  She is learning every day though and I have noticed something inside her that has changed.  Her eyes water when we talk about adult things that children don't generally need to talk about.  She understands that life is hard, but good.  She learned that younger than most.  She understands that "fair" is now always what we think it is.  I just love her zest for life.  

As far as the success of the surgery goes, like I said, we will need to be patient.  I have noticed a difference in handwriting, balance and coordination, and things like cutting and coloring.  So that is great news.  I just hope and pray that she will "feel" better than she did before surgery.  It's hard to separate from post-op stuff and what will continue to be a problem.

Sorry the update is so late.  I really wanted to have it here for her, even though most of this is old news.  This was her experience and I hope she will appreciate being able to look back through it and see what she's overcome.  

After 5 very long weeks of waiting we had our visit with Dr. Brockmeyer, the Neurosurgeon at Primary's.  He showed us Brinley's image and told us the basics, which we already knew, that she does in fact have Chiari 1 Malformation.  He was not at all surprised that she is having the symptoms that she is having, and while I was over prepared to plead her case to him, it was unnecessary. He said that her brain is acting like a cork and blocking her spinal canal so the flow of CSF fluid is interrupted, causing her symptoms.  He stated that based on her image and her symptoms, he strongly recommends decompression surgery and was very confident that it would be helpful to her.  We felt very comfortable with him as her surgeon.  We know he has done hundreds of these surgeries and is competent.  He's not the kind of guy you want to give a big hug to afterwards, and we know long-term we may have issues, but he knows what he is talking about and that is more important to us right now.  I felt a little rushed and had to interrupt several times as to not be rushed through and leave more confused than we came.   I was expecting that though, so I didn't mind.  He was extremely confident, and that really put us at ease with the decision to do the surgery.  He did, however, give us the choice between two surgeries.  One is a bony decompression, where part of the skull is removed to make more room for the brain.  It has a fairly high success rate, however Brinley's herniation is a large one, so he said we would have a better chance of alleviating her symptoms with the decompression with duraplasty.  It has more risks involved, but also has a higher success rate, and a less chance of having to re-do a brain surgery, which we don't want.  It involves removing the part of the skull to make more room, then opening up the dura, a membrane surrounding the brain, shrinking the cerebellar tonsils, and patching the dura with another material to make more room for spinal flow.  It is more involvement with the brain, however it would be devastating if we did the surgery only for it to not be successful.  We scheduled the surgery for Feb. 20th and have a week and a half to decide.

He also wants to take a look at her spine to make sure she doesn't have a syrinx, a pocket of spinal fluid built up in her spinal canal.  He will also check for tethered cord syndrome and make sure she does not have a leak where she received dozens of lumbar punctures during her cancer treatment.  If she does it would have to be repaired as well or it could potentially cause the same problem again.  We are hoping it is just a typical chiari 1 malformation and nothing else is involved.  That MRI is scheduled for Tuesday.

David and I both felt good about this during our meeting.  Although I have been having a difficult time when I think too much about it, I still feel that we felt good about it because it is right.  We still have decisions to make about the surgery, but feel we will be guided to what is right for Brinley.  We could not do this without that guidance and peace of mind.  I know that the Lord knows everything, and without being able to turn to someone who knows all to help us we would be lost right now.  My faith is stronger than ever.  We are in a good place spiritually and that is a huge blessing.

The next day I had anxiety about the decision to schedule the surgery.  A good friend with similar headaches as Brinley has told me if she had the choice to relieve her pain without the extra decisions of a family needing her, school she would miss, financial ramifications, etc.; if she could think of only HER she would do it without a doubt.  That helped so much.  It's so difficult to make a decision like that for someone else, especially your own child, but I imagined Brinley as an adult, trying to make the decision to have a surgery that her parents were too afraid to get her, and having a family to figure out, finances to work through, a life to put on hold, and I realized that we would be doing a great disservice to her by not trying to help her now, when she doesn't have all those things to deal with.  Thank you for following a prompting to tell me that.  You know who you are.

Brinley has a mixture of feelings right now.  She is so excited at the thought of being pain free and is literally counting down the days to surgery.  She knows it will be painful and hard, but she is ready for it.  She is nervous and asks a lot of questions.  She asked me tonight if you can die from surgery.  So I know she is nervous and thinking about it.  She is so, so brave.

We will be fasting on Sunday, February 17th for Brinley and would welcome anyone who would be willing to join us.  We feel at peace, however there are a lot of things that can happen and a lot of stress involved right now for all of us.  Jade is very worried about her little sister, and said that she liked it better when she had cancer because it was easier.  I think her being older and understanding things better has put some extra anxiety on her that she didn't experience during Brinley's cancer treatment.  Taylor is very quiet about it, but Taylor doesn't share her feelings as easily and I know she is worried.  She tries not to think about it.

Brain surgery sounds big to me.  Too big to think about, so I keep it factual for now.  As it nears I know my nerves will get the best of me.  I pray with all my heart that this will all be okay, and that Brinley can live a pain-free life.  The NS said that it is amazing when these kids realize what life is like without pain.  As David and I look back, we realize she has been in pain for many years of her life.  We just didn't know this was contributing to it.  It makes us both sad, that she is so familiar with pain.

Thank you to those of you who have asked and cared so much.  Thank you to those of you who have looked into my eyes and said it will be fine.  I really helps, even if it's just words.   I truly hate that we are asking for prayers again for Brinley, it feels so redundant.  Yet she needs them, so we ask for them.

It looks like Brinley is going to have a new challenge.  I have been giving updates here and there on facebook, but figured since this is Brinley's story for her to read through I should probably post here as well, although honestly I haven't felt up to it since I haven't posted the good stuff lately.  I should have been better at that.

For the last 3-4 months Brinley has been  - not so great.  She has been having terrible headaches and it has turned into a daily headache that gets better and worse, but it pretty much never goes away.  Along with stomach aches that can be just as bad, we started to get concerned.  We talked to our oncologist and he offered to do a scan to see if she may have a sinus infection.  With a high-deductible plan we declined and just treated it as a sinus infection to see if it would help.  It didn't.  We went to our pediatrician who ordered an MRI of her brain, which at that point we didn't care how much it would cost.  The headaches had turned to migraines for her and seemed to be getting worse.  I didn't talk much about it, but last year around this time the same thing happened.  Brinley just felt miserable for months, and then she broke her arm over Christmas so we decided to check her bone marrow to make sure she hadn't relapsed, which she hadn't.  

The scan shows that Brinley has Chiari 1 Malformation.  You can read all about it at that link, but the basics are this:  The back of her skull did not fully develop to the correct size and there isn't enough room for her brain.  As a result of this crowding, part of her brain, the cerebellum, is hanging down into her spinal canal, causing all kinds of symptoms.  

When the doctor first told me this, his words were something like "I don't know much about it.  In fact I've only seen about 10 cases in my 40 year practice.  I'm referring you to a neurosurgeon and it will take a while to get in.  In the meantime you should google it to learn more about it."  That's the first doctor that has ever told me to google anything, ever.  He has always, always been wonderful to us, and this is no exception.  He said she can't endure life like this and put her on a medication he gives to patients who have migraines, and it seems to keep the headaches under control (making it so they don't get to migraines as easily) while we wait for her appointment. 

The day we were told I was so relieved.  It answered questions.  It wasn't cancer.  Nothing could be worse than it being cancer again.  This is not life-threatening.  It explained so many things about her that I have been blaming on the chemo late effects - headaches, stomach aches, frequent bowel movement accidents, decline in handwriting since the start of kindergarten, clumsy/balance issues, behind physically with coordination, blurred vision, etc.  To have answers was like a puzzle was just put together for me and it was such a relief.  Then I started googling and learning more about this condition....and I was so sad.  So sad that there was more in store for her.  I thought the mountain she climbed would be her cancer.  I don't want her to always know pain, and doctors, and a lifetime of medical crap.  I found a support group for parents of kids with chiari and I started seeing posts about walks, and chiari awareness, and it was so upsetting because of the familiarity of it all, except with childhood cancer.  I don't want us to belong to a new club.  So I cried, and researched for a few days and we have decided what we needed to happen for her - see the end of this post for our prayer requests.  

It has been 2 weeks since we were told about it, and I think I have learned everything I need to know, because I keep reading the same information over and over, with a few new things on occasion.  David posted a quote on facebook that could not have been more true - "A worried mother does more research than the FBI".  Children are typically asymptomatic, and it will show itself in adolescence or adulthood, but for some reason Brinley is having symptoms now.  They measure the size of the herneation - meaning how far the brain is hanging in the spinal canal - and anything above 5mm is considered chiari.  Brinley's herneation is 18mm, so I don't think there will be any question when we see the neurosurgeon as to whether or not she has it.  The question will be what to do with it and if it's in fact the cause of her symptoms.  

Treatment options are limited - there is a surgery they can do called decompression surgery that more often than not relieves symptoms, but there is no cure.  It consists of removing a part of the skull to make more room for the brain, among other things.  Sometimes it works, sometimes it doesn't, sometimes it helps for a while and then another surgery is required.  I believe there will be another test to check for any syrinx in her spine, which would determine whether surgery is "necessary".  It sounds like there is a grey middle where the neurosurgeons tend to disagree - when to do surgery.  There is a good chance that if our minds are not completely put to rest with the surgeon here we will be traveling to New York to be seen at The Chiari Institute for a second opinion.  We will see how we feel after our first meeting in three weeks (5 weeks to wait for an appointment is utter torture when you don't know what will happen and you are watching your 6 year old in pain every day, BTW).  I am fully prepared to fight for her if the need arises, hopefully it won't.  I have heard good things about this neurosurgeon.  

Another option is to treat symptoms.  Pain therapy, physical therapy, occupational therapy, etc.  Since there is not a cure, she would be managing symptoms throughout her life.  Right now we are just trying to get her to complete the school day without having to come home to go to sleep.  The thought of her living like this forever is what is truly tormenting my soul.  She has good days and bad days, but I can tell she has grown accustomed to having a constant headache, because she plays through it and only stops when it is severe.  Then she just sleeps until it feels better.  She is such a trooper.  However, she has a sick look in her eyes all the time (the look us mom's know so well), and I am worried she will not be recommended for surgery and will have to live with constant pain. My heart hurts looking at these eyes every day as we wait, and wait, and wait.  We would prefer surgery if it would alleviate her pain.

I have seen terrible stories about this condition.  I have also seen wonderful success stories.  I have read too many stories if I am being completely honest.  Back to what I have decided is most important.  The story that matters right now is Brinley's story.  She will be her own story.  The most important thing is that she will be able to lead a normal life.  Please pray that this will happen for her, whether it's through surgery or through her symptoms dissipating, that she will be able to lead a normal, functional life.   Pray that David and I along with her doctors (all of them) will be able to work together to find the best solution for her.  Pray that we will feel comfort when that solution is presented to us and that we will know that it's right.  Pray that the doctor will listen to us and that we will ask the right questions to get her to the best treatment.  We are feeling very vulnerable in this new world we don't understand.  

She has had some big challenges for such a young girl.  She has had pain as an unwelcome companion much of her life.  She tells me she just wishes she didn't have any more headaches.  I don't understand. I just don't understand sometimes.  I love her.  And it could be worse, I know that.  It could be much, much worse.  Thanks for checking in, and for asking about her.  I don't know where we would be without our family and friends.  I have done a lot of talking about it, thanks to those of you who offer a listening ear.


Dear Brinley,

Today is an important day.  Four years ago today , September 3, 2008, four doctors stood over us and told us you had cancer in your blood.  That was the scariest sentence that has ever been spoken to me in my life.  It was the most devastating day of our lives.  You don't remember very much of it.  You are too young right now to talk to us about this, but I have things to say to you today.  So I will say them here.

On one hand I can't believe it's been four years already, on the other hand it is starting to feel like a lifetime ago that you went through those difficult years.  Most of the time I don't think about it.  That is a blessing, because there was a time when I thought about cancer every hour, every minute, every second of every day.  Now it is a memory I have to search for and pull out when I want to, with occasional times where it is brought to the surface immediately by something that is said or something I see.  The fact that you don't remember much is also a blessing.  I remember our bishop telling us you wouldn't remember most of it.  It didn't make it easier, but it was true.  You remember how you felt on chemo, and the sleepy medicine, and your port, but so much of it has faded from your mind.

I know we are submerged in the world of childhood cancer.  I also know that many people wonder why, when you are doing so well, we feel the need to continue the battle.  You won right?  We don't need the support any more, we are a happy, normal family.  Why are we constantly asking for people's help still for this cause?  Do we just like to relive it to get attention?  I am sure those thoughts have entered the minds of those around us.

There are a few reasons we continue with the fight.  One of them is for those left behind on the battlefield.  We love them and can't leave them.  We know they need our voice from this side of the battle because they are in the trenches and can't speak right now.  We can do the easy part now that we are out of those trenches.  Another reason we are so involved, and the greatest reason, is you.  Without you we would never know about this world that only existed in our peripheral vision.  You made us look at it straight on, wide eyed, and we were shocked and appalled at what we saw. We will never be the same because of it.

The same way we honor veterans who have fought so bravely, there are specific times in which we promise them we will never forget them and what they have gone through. This is how we honor you.  We don't care if you remember or not, we remember.  And we honor you by never forgetting.  September 3rd is our family's own personal 9/11.  Our own D-Day.  The day cancer attacked our family, because by attacking you, it attacked our family.  And yes, this enemy is as real to me as any enemy that exists to man.  It is a threat that seeks lives to destroy, families to devastate, people to break.

So every September, during Childhood Cancer Awareness Month, I will search my memory, and read back through the writings, and look through old pictures.  And remember the way you fought, and the way you suffered, and the way you conquered.  I will share with others where you have been.  Not because I want attention for it, or for you, but because you are a childhood cancer HERO and should be recognized as someone who fought the beast and won.  Until there is a cure, I will fight for those who I know are where you have been right now.  I fight for them, yes, but it is because of YOU that I fight.  You are a war hero, and what you have been through should NEVER ever be forgotten, by any of us. I witnessed it, and therefore could never push it aside as though it didn't happen.  

I honor you this month Brinley.  I love who you are.  I love what you bring to our family.  We would be much less without you, and I will always know that we could have lost you. And I thank God that we didn't.


Is the year half over?? I can't even believe it.  I hear the older you get the faster time goes.  Time seems to slip right through my fingers, which is okay I suppose.  It seems the further away we get from Brinley's treatment the more it fades into just a bad memory, not a way of life, or something that defines our family.  We are adjusted to "normal" again, though we will never take it for granted.  This feel right finally, to do the things a family normally does.  We have been busy with life....

Taylor is busy with soccer, piano, and getting ready for 10th grade (YIKES!)

Jade loves karate and even got two second place and one third place metals at her last tournament. She is also in the choir and learning piano.

Brinley is busy being a normal 5 year old.  Playing dress up, holding baby chicks, going to kindergarten. Look at her long hair :)

Mylee is so old...she turned 3 in March so we don't have any babies any more.  Vacations just started sounding more fun!

Brinley gets checked every three months now at Primary's.  Every time she passes with flying colors! We did have a scare over Christmas and had to check her bone marrow because she had been sick a few weeks and then broke her arm (which was how she was diagnosed...uh...scary) but all was well and her marrow remains free from cancer.  We feel so blessed to be where we are, words can't express.

With summer coming up, it is time for us to prepare for our big September fundraiser.  After MUCH thought, anguish, and discussion, David and I have decided to put all our eggs in the CureSearch walk this year.  We will not be holding Sweet Brinley's Grand Stand.  It took months to decide because it is so close to our hearts.  It was so much fun, and we love Alex's Lemonade Stand so much.  When it was decided the CureSearch walk would be held in September David and I realized it accomplished the purpose we set out to accomplish with our Lemonade Stand.  A community event during Childhood Cancer Awareness Month that would raise funds and awareness of pediatric cancer.  It was our first year last year putting on the CureSearch walk, and it raised over $70,000!  In the beginning I was very sad to not hold our stand but this just feels like the right thing to do.  We love CureSearch too, it is the same organization I have lobbied with in DC and they are working towards the same goal.  So I am on the committee with some amazing, dear, cancer mom friends and we are STOKED!  This year is gonna be big. You will not want to miss it.

Oh.  Of course.  You are wondering what part you can play in all of this.  First off, you will want to join our team.  Today.  Right now.  Trust me.  There are prizes.  There are competitions.  You will be glad did it.  It is only $10/walker.  Sign your kids up too.  They are FREE!  And there will also be prizes for kids on Team Brinley!  We are trying to build our team early on so we can make it fun over the summer, so if you think you will be joining us, do it sooner rather than later so you don't miss out!  You can sign up here:

If you live out of state or know you will not be around for the walk, you can just donate to our team under the same link.  That would be awesome too :)  Or there is a "virtual walker" option as well.

Still skeptical?  Need a little more info?  I will be back in a few days with another post that has more information.  I didn't want to word vomit all over you just yet.  A little at a time...

Hope to see some new Team Brinley members this week!

We have had the most wonderful Christmas ever...enjoying a healthy family at Christmas-time is something I will never again take for granted. I, yes, the president of the procrastination club that I will start next week, actually finished everything a few days early and just enjoyed being with my family these last few days. If we had a camera in working order I would post some pictures, but we are currently living life without a camera (GASP).

I love everything about Christmas. I love the shopping, the togetherness, the celebration of Christ, the traditions, I am crazy about Christmas. Every year seems to add a new tradition, and it does get crazy, but nothing melts my heart more than this from my 14 year old daughter. "I LOVE Christmas, not even because I get stuff, I just love the 'feeling' I get when the season starts and we start our Christmas traditions." This is the first year she gets that Christmas "feeling", I guess the feeling of home...that's what it feels like for me. I always remember Christmas being such a happy, special time growing up and I want my kids to have that same feeling when they are grown. So that made me really happy. Tonight all my kids said this was the best Christmas ever. I hope they will say that every year.

I do want to share one of my highlights this season, because it really put life into perspective for me. Some of my cancer-mom friends and I went to the hospital to give a little gift bag to the families staying in-patient at the hospital on the cancer floor. When we got there, we were going to just drop by the gifts to those we knew there and say hi, then leave the rest with the nurses to give out. One of the mom's suggested we just poke our heads in the rooms and leave it ourselves (with the nurses permission, of course...). It's always hard because there are times at the hospital you just want your privacy, and there are times you are desperate for a visitor. So we tried to read the families as best we could. I left there so humbled, and it brought me back to that period of our lives. As we went to the rooms and learned about each family, an overwhelming sense of love for those families consumed all of us. One woman in particular who I will probably never seen again, but that I will not ever forget, was staying here from Idaho. She reluctantly let us in, and we talked a little at first and the more we spoke the more she opened up. Her 12 year old daughter had been battling a disease for 4 years (it was not cancer, but she was on the cancer floor because she had just undergone a bone marrow transplant). She was so sweet, and she talked to us about desperately needing a support system but that she couldn't afford the internet to get on any type of group. She just needed so badly to let out her emotions and frustrations to someone who understood. After we spoke for a few minutes we said our goodbye's. As I turned to follow out my friends she grabbed my arm, and quietly asked if she could give me a hug. We embraced, and she began to cry. She cried in my arms for a long time, and I felt something in her hug. It was the weight of the world, and it was on her shoulders. I muttered out the only words I could find, that she was thought about this holiday by people who cared about her and her family. We hugged again and said goodbye, but I couldn't possibly describe the connect we felt from one person who needed a shoulder to cry on to another who had one to give. I remember needing that but always being too embarrassed to ask for it. I was amazed that she was willing to ask a complete stranger to be that for her. She was lovely. That would be enough to make my Christmas, but wait.....there's more.....As we were leaving one of my friends came up and said "the woman from the room we were just in came out and gave me this and asked that we use it to continue this type of thing for others going through this." It was her, the woman who couldn't even afford internet, and she had given us an envelope with $80 in it. That she could wrap her brain around giving to help someone else at that time in her life was incredible.

We met so many new people that night, from a mom whose daughter had just been diagnosed two weeks ago, and also needed a hug (which she got from my lovely friends) to a mom with a new baby whose 2 year old son had just relapsed the week before after already going through chemo last year. We saw some kids and mom's we know and love. None of us wanted to leave, it weighed so heavily on our hearts, yet lifted them at the same time. I came home feeling so sad, yet so very grateful. I remember during Brinley's treatment how badly I wanted people to know what a blessing it was to have a healthy family. It reminded me that I have that, and I thank them for doing that for me. And I think of them so much, and I cry for them and I pray for them. I am a quiet gal, and don't always say or do the right things like I wish I did, but I know so many people struggling this year and I hope they know that they are in my heart, even if I am not perfect at expressing it.

I hope this season brought you joy and peace. It was a wonderful year for us. Merry Christmas.

Has it really been this long since I have updated? We did not fall off the planet, but have been crazy busy with life, it's moving along so quickly! First off, I need to do a lemonade stand update....we ended up exceeding our goal!! There are still a couple donations that need to go through, but we are so happy with those amazing people who pulled through at the end to help us not only meet but exceed our goal. It is so touching to cross paths with such amazing, wonderful people.

One of those people, a new friend who lives literally ACROSS the country and whom I have never met has decided to do a fundraiser to help in a couple of different ways. I would love, love, love for this to be a great success and I am very excited about it. She is a Scentsy distributor (is that the right word? Oh, I don't know) and is going to call her fundraiser "Buddies for Brinley and Friends". Here's what it entails: if you go to her site at, you can
you can purchase a scentsy "buddy". The stuffed animals purchases will then be sent to me to deliver to the cancer kids at our hospital. NO WAIT, there's more...all her proceeds from the buddies will also be donated to one of our faves, HopeKids. HopeKids is an organization that provides ongoing activities, events, and support to children and their families dealing with a life-threatening illness. And well, we love them. So it's win-win. Donate a bear to a child with cancer, part of the money goes to help families dealing with a child with a life-threatening illness. I know, right?! So let's get this clear, because sometimes there is still something "in it" for the person doing the fundraiser, such as "you help me sell my product, and I will donate some of my proceeds to your cause". No, not this one. All of the bears, and all of her proceeds are being donated. Just wanted to be sure it is understood how great this is. I love people like this, I just love them. So what's in it for Cheryl? That warm, fuzzy feeling that comes with helping children who need it. Is there anything better than that? Nope, sure isn't.

If you have any questions or want to purchase a buddy, you can also contact her at You can also purchase a buddy or make a donation through her paypal account at also.

I am very excited about this, and so is Brinley! She loves her cancer friends so much.

I must post pictures soon, everyone is changing so much it is unbelievable. Brinley is doing wonderful. She is in Kindergarten and loving just being a normal kid. And we are loving it too.

It has been a week since Sweet Brinley's Grand Stand, and I have not written about it. I don't have pictures yet, but would like to write about the experience and I will post pictures as soon as I have them.

Before I get into the report, I want to say that I am going to be brutally honest. Part of this journey with our Lemonade Stand includes disappointments. It wouldn't be the same without them, and our successes are so much sweeter because of them. So to leave that out would be like coloring a picture with only one color. And I can't pretend this year was not difficult.

I would like to start with our disappointments this year, that way we can end on a good note :)
Things were just harder. We worked harder, we made improvements, we tried new things and there was a lot more involved with our stand this year. All things that would get us to our goal.
Except we didn't make our goal. I was 99% certain we would do our $10,000 goal this year. We received a few sponsorships and we had 6 stands raising money to help us, both things we did not have last year. Those things together totaled over $5,000 of our goal. See how this would make me feel confident, since we were only $2800 short last year? Anyhow, after tallying things up we realized we are about $700 short of our goal, although all the funds are not showing yet, so that is just an estimate. I can't tell you how disappointed I was. We made a little less at the event, and had fewer online donations.

This event took everything out of me, physically, emotionally, and mentally. I am not sure how it happened, and I am still trying to figure it out. All I know is I have only felt this type of overall exhaustion one other time in my life - during Brinley's treatment. Our entire committee felt the same way, exhausted. I realized that we will not be able to continue without making some changes, because we couldn't do that to our family. After a full week, I am still not quite recovered. We talked about how we can do things differently as a committee and I am feeling very confident that with the necessary changes we will be able to continue this year after year.

There is something in the disappointment that I just can't seem to describe to people. Something that causes an ache in my heart when I think about it. I will do my best to describe it but I am not sure how successful this will be. Somewhere within me is a passion that is completely and utterly all consuming. It is a different kind of passion than what I feel for my family and loved ones, or for the Gospel. This kind of passion has never existed in my life before. It's a feeling of helplessness, like you are screaming and people aren't listening. Now before you start feeling defensive like I literally mean "nobody" is listening, please realize that there ARE people listening. Just not enough people to satisfy that "passion" that is inside of me. I think about Brinley and all she went through. Then I look at Skyler, who came to our Lemonade Stand, with so much stolen from him because of cancer, yet so blessed to still be alive. Then I look at Kaidan, who also came to our stand, in a wheelchair because of surgery she just had on both ankles to try and fix the constant pain she is in from after-affects of the chemo. I think about Jacob, who should be in 9th grade like Taylor, hanging out with his friends, but instead is in the hospital because he just had a bone marrow transplant. I think about Daniel, and Anika, and Tanner, and Nick who aren't with us any more. And then I can't breathe, and I don't understand why everyone I talk to doesn't care about this. I don't understand what more I need to do, what more I need to say, because to me it is so OBVIOUS how badly these kids need us, and it is so OBVIOUS what a difference we could make if everyone who heard about these kids would help somehow. But they DON'T! They don't and that "feeling" inside of me grows and grows, and then it's in my throat and my eyes burn and I feel angry and discouraged. It is so hard to have a drive like that for something and feel like you are swimming against the current, but you are swimming so hard because you want it so badly, but the current is the current, and people are people. They will stand in your way, and not listen, and not care, and make you want to throw your hands up in exhaustion and frustration because you are wasting your breath. Or are you?

As I was crying (literally) to my close friend a few days after the event she said this to me. "But Kristin, I am aware now. And my sister is aware. And my friends are aware. And my parents are aware." And I realize that there are people listening. There are people doing something. It may be 1 in 10 people I talk to, but GOD BLESS THOSE PEOPLE. Instead of focusing on the people who don't listen, I should focus on those who have been listening.

Which brings us to the successes of our event. We raised $9,300!!!! That is huge!! How can I sit there and focus on the $700 we didn't raise when we raised $9,300! Robert and Catherine Pedersen were our presenting sponsors, and opened up their home to us and listened to our message. And really heard what we had to say and immediately wanted to help us! Six people/families took on the task of holding their own stands and they were crAZY successful! A few of my dear friends were unable to hold their stands, but I know where their heart was, and I consider each of them as having held a stand anyway. I am so proud to have friends and family willing to do something like this. I will never be able to show them my heart, and how they fit into it, but every person who helped us with this event fits in there somehow. Those who donated, or showed up at the event, or donated money or supplies or items to sell, or helped out during the chaos of setting up (chaos is an understatement), or volunteered, or brought their kids or grandkids, or helped in any other way. They went into that place in my heart that is reserved only for those people who care about this. I have friends and family who are dear to me, and fit into special places, but this place is somewhere different. This is the place where Brinley's pain hides, and the sorrow I feel for those kids suffering or lost goes. It is a place that is reserved only for this. I don't know how else to describe it, but there is no other place in my heart like it. It is tucked away, protected from all other parts, and it is very special to me.

Another success: awareness. This year was miles better than last year as far as getting attention for our cause. We were able to be on Good Things Utah, our event made the 5pm and 10pm news, and we were in the West Jordan Journal and the Salt Lake Tribune, with a HUGE picture in the paper. Half of this battle is awareness, because awareness=funds=research=cures. Several of my cancer mom friends were in news stories, or newspaper articles and it made me so happy to see the media giving this some attention. We even spread it to other states with our Las Vegas and Maryland stands!!

After our event, I read the blog of our dear friend Skyler. His mom had written about our event, and if you know anything about Skyler, he has been to hell and back. He has been on death's door, and survived. He is truly a miracle and we love him. Every time I see him my heart breaks. It rejoices that he is still here, but breaks for what cancer has stolen from him. And as I read her blog, I knew that if we did not succeed in anything else, reading her blog and watching him go down that slide and take something back from that beast was all the success I needed. You can read about it HERE.

Last but not least, we learned something from this. We learned that we are not perfect, we make mistakes, we offend people accidentally, we hit walls, we fail, we succeed, we get frustrated, we cry, we fall down. Then we get back up, brush ourselves off, and keep swimming against the current. Because there are kids on the other side who need us to swim.

There are so many thank-you's to offer. Our amazing committee, who have been dedicated to this from the beginning. David who is right there with me all the time. I am so blessed to do this together with you. Alissa, Craig, Nancy, and Melanie, you make my heart happy and I am so blessed to have you in my life. Thank you. Mom and Dad, Matt and Jen, Ali, the Creer Family, Lori and Rob and my awesome cousins, the Nawrocki family, Alissa and Craig, Nancy and posse, thank you for taking on a stand of your own this year. You amaze me. So many people who helped in so many ways. Thank you. This was a success. It really, really was.

One more plug for tomorrow....

Join your voice with ours in the fight against childhood cancer! Come to our Alex's Lemonade Stand Grand Stand tomorrow at Veteran's Memorial Park in West Jordan from 12-6. The event will include a bounce slide, rock wall, carnival games, music, food, and FREE lemonade!! All activities are free, and hot dogs will be available for purchase. Help us raise awareness for these little brave fighters!

We got to go on Good Things Utah this morning to talk about it. Here is the clip:

REMEMBER if you can't make it you can donate online at

Hope to see you there!

I wish I had more time to write, but I am in over my head planning our Grand Stand this year, and just have to get this information out. IF you are unable to attend our Alex's Lemonade Stand Grand Stand this year, there are many other opportunities to attend an Alex's Lemonade Stand, thanks to our several stand hosts! This is something we added this year to our stand and have had so many amazing people step up to the plate. It will do so much to help us reach our goal this year. I want you to know about all the stands around town and out of town that you can also attend. Be sure to notice the dates, several of them are the week before ours.

Hosted by my dear friend Susanne Creer and her sweet daughter Abby! (Okay their whole family really).
Location: Windmill/Thayer
Date: Sept 10th
Time: 10:00-3:00

Hosted by my wonderful parents and just as wonderful friend Ali Thompson!
Location: Albertson's
Date: Sept 17th
Time TBD


Hosted by my Aunt Lori and Uncle Rob all the way across the country (wow, amazing right?). Well, yes they pretty much are.
Location: Edgewood Nutrition
Date: Sept 10
Time: 11:00-3:00

Hosted by Angela and Tige, Taylor's step mom and brother. Yep, that's right, my ex's wife. Read it again, it does not say my ex-wife. Gotta love that right? Thanks Angie!!
Location: TBA
Date: Sept 17th
Time: TBA


Hosted by Kristi Gulczynski, another cancer momma (a new cancer mom) with just as much gusto and passion as...a cancer mom. And a big thank you to Lori for allowing us to have them at her WACKY tournament!
Location: Two softball locations, TBA
Date: Sept 10
Time: ALL DAY!

Hosted by Mystee Sudbury, another fellow cancer mom and a pretty amazing lady, I hope to be just like her someday!
Location: TBA

Hosted by our very own committee members Alissa and Craig, Aunt Nancy and her amazing posse that we ADORE. Wow, they do it all! Actually this is three different stands, each entrance. There is no escape.
Location: Downtown SLC Smith's Marketplace
Date: Sept 1oth
Time: most of the day

Hosted by Alisa Ross, a veteran cancer mom who constantly works her tail off for the cause.
Location: TBA
Date: Sept 17th
Time: TBA

Hosted by the Hill family, our long-time friends who we LOVE so much.
Location: Saratoga Springs
Date: Sept 17th
Time: 10-1 or so (they have to close up shop to come down to our Grand Stand!)

There are a couple more possibilities, so stay tuned!!

I hope you can make it to one of these stands. If you have a specific one you'd like to go to and need more info (addresses, etc.) post a comment and I'll get you the info.

Now, don't forget you can still donate online if you won't be able to come.

And just to throw this out there, we are desperate for something electronic at our raffle (which is going to be AWESOME) so if anyone has any connections to an electronics store or has an IPOD touch sitting unopened in a corner somewhere you'd like to donate, let me know!!

Let's spread some awareness - someday people will know what September is.

It is September again. Today is Brinley's diagnosis anniversary. Three years ago today we were told our daughter has cancer. During Childhood Cancer Awareness Month. Except I didn't know it was, because there is never any gold anywhere. I won't start down that path though, it may not turn out pretty if I do. Our Brinley is doing so well. She is getting better and better, looking healthier and happier month after month. It's so hard to believe where we sat three years ago. I remember begging time to be our friend, so that we could just pass that trial, and praying that we would learn from it. What a blessing it has been to learn from our experiences. Now let's not ever go down that road again.

August was a very emotional, difficult, wonderful, stressful month. The emotional part, our sweet friend Daniel passed away. Cancer took his life at 7 years old. Much too young to leave this world. May I just tell you about him? He made the world a better place. When you were with him you wanted to be better. You knew you couldn't complain, because he didn't, and he had every reason in the world to complain. He was so very special, in a way I could never explain or describe. Special in a way that you wonder why he is even in this world, he was too good for it. Then you realize he is here to teach us. To receive a body, and teach us how to live. I had the opportunity to speak at his funeral about the way he has touched people. I just couldn't do him justice. I tried so hard, but while preparing I realized our vocabulary is very lacking, there aren't words beautiful enough to share. It reminded me of the story of Christ coming to the America's and they weren't able to write his prayer because it was too beautiful, too sacred, and there weren't words for it. That is how I feel about Daniel. Special doesn't cut it. Wonderful, nope. Amazing, still not good enough. That's why I feel so privileged to have known him. I don't need a word I suppose, because I got to be with him enough to experience it myself. The morning he passed away we were able to go visit him and give him a kiss (he was quite the ladies man and was used to kisses...) and he was surrounded by love. So very sad, and so beautifully peaceful. His legacy, to "Love Each Other" was shown in that room, and it was a tribute to what he taught us, to love each other. He will be missed in this world, but I only imagine those rejoicing to receive him in heaven. They are lucky.
Sweet, sweet Daniel, we will miss you. Please save a hug for us. Your hugs were so special. And you are free now, from cancer, forever and ever. You won. Thank you for touching us the way you did. Our hearts are changed forever. We went to the movie theater today where we saw Pooh and you wanted to sit by "Brinley baby" and got candy stuck in your teeth. Brinley and Jade remembered how fun that was. Brinley did your Cars pinata at her birthday party and we were pretty sure you were laughing with each swing, watching us try to break that thing open! They will always remember you and how privileged we were to know you. And I wish we had more time to know you better.

With Daniel's passing we are more motivated than ever to beat this beast. Which leads me to the stressful part of the month - the upcoming Lemonade Stand! Oh, this year we are getting bigger and better (or at least we hope...) We have reached our goal of 10 stands in different locations (12 actually!) helping us get to our $10,000 goal. We have stands all over the place, Salt Lake area, Las Vegas, Reno, Montana, Maryland. I will give more details this week because many of them are happening the 10th, and if you are close to one and can't make our *Grand Stand* (that's really what it's called, I didn't name it that, although it will be grand..) you could stop by one of the other stands. A HUGE thank you to those of you who have taken this on. It is touching to have people so willing to help this cause, and it makes September one of my favorite months because we all come together for these kids who need us. We have some very special people in our lives.

If you can't make it to our stand this year, please consider making a donation, every single dollar helps, and gets us closer to a cure. You can donate at It would be a wonderful "diagnosis anniversary" gift (hint-hint).

Please do something this month to spread awareness. Make gold ribbons and pass them out. Write a grocery store and ask them to do something to spread awareness for childhood cancer. Wear a ribbon and give someone the chance to ask you about it. Hold your own lemonade stand with Alex's Lemonade Stand. Eat at Chili's where part of the proceeds will be donated to St. Jude's this month. I don't care what it is, just do something in honor of these kids.

I was watching Rapunzel with the kids and the part in the bar where they all sing about their dreams came on. I started wondering what I would sing about (am I really admitting that?) and I realized my dream (second to finding a cure) is for September to be covered in gold the way October is covered in pink. No joke, it was like a daydream from Mr. Krueger's Christmas, I pictured walking into a store where there were gold balloons, products with gold ribbons, Alex's Lemonade Stands in the front of the store. That's the way September should be. It would honor these warriors who fight a battle inside their little bodies. A battle that nobody can fight for them. They are only children, fighting so hard to become adults. SO LET'S HELP THEM BECOME ADULTS!! Help them have that life that we all treasure, a family of their own, children, grandchildren. That's my dream.

Please don't tune me out this month, because I am about to get annoying. Facebook friends, beware. Don't do it...don't hide me....

This morning I was writing a request letter to a business to request a sponsorship for our Alex's Lemonade Stand coming up next month. I was writing about Brinley, her story, and I was sitting directly across from my kitchen window. As I was telling her story, I could see her outside playing and was overcome with a desire to tell them more than was appropriate. There was so much I wanted to say, to write, and so I decided I would add it here instead. Here is what I would have liked to add...

"At this very moment I am looking at her play outside. She is smiling. Her hair is long and curled. She has a flower crown around her head because she is the princess in the game her and her sister Jade are playing. She is swinging on the swing set and facing me but she cannot see me watching her. When she smiles her cheeks puff out and her eyes squint. She has a high dimple on one of her cheeks. I love her smile. She looks like she could be in a movie. Everything seems in slow motion. The tears well up in my eyes, I am not quite sure why. Partly because I remember her bald little head just trying to feel good by swinging on that same swing set. Partly because the future will always be unsure, I will always wonder if the cancer will come back. Partly because her happiness is so beautiful to me. Partly because of where she has been, and where she is now. Mainly because she is my child, and my love for my children is so uncontrollable it makes me cry. Uncontrollable to the point I would die for any one of them in a heartbeat, without a second thought.

I wonder for a moment what it would be like if the cancer had won. I imagine her disappearing in the swing, the joy I was experiencing at that moment disappearing because we had lost her, and could no longer experience these "mortal" joys with her. I wonder if you will feel this with me as you decide whether or not to donate or become a sponsor. It felt so hollow, so empty. Jade outside playing alone, missing her sister, crying for her in the night. I wondered how any family could possibly move on. I am overwhelmed with immense gratitude that she is still here, swinging on the swing, and desperate sorrow for anyone who does not share the same outcome as us. And I wonder how in the world I can give you a picture of this moment. I only wish I could send it in this letter somehow so you could feel it when you read these words, how desperately I would like to give that to you. I beg you to help us raise this money, help fund this research that is so unfairly underfunded. I beg you to care about this. I beg you."

That's what I wanted to write.

My how time flies...our Alex's Lemonade Grand Stand is fast approaching! Now I know what you are thinking. You are thinking....Kristin, you just asked us all for something, rememberrrrrr? The CureSearch Waaaaaalk??? I know, I know, I really did ask you to join our team, begged maybe, if I remember correctly. I couldn't help it. It was the first walk, I was so dang excited about it, I thought I could get away with asking for a couple of things right in a row and then laying low until next year again. Plus the walk was amazing, and if you came I really don't think you regret it. PLUS, I was very clear about not asking for donations for the walk (yes there was a $10 registration fee, but that's where it stopped, right? Remember?) How does that sit? Okay, got that out of the way, I can see that thought drifting from your mind. So...

If you are an old-timer with this blog, you will remember from last year Sweet Brinley's Grand Stand. If you are new, here is a rundown. September is Childhood Cancer Awareness Month. One day, long, long ago (way back in Cancer Land, 2009), I was rocking my chemo-sick child during the month of September. I had an awakening that I will never forget. You can read about it here. We have been determined to fight back and raise awareness from that moment on. We had our first Alex's Lemonade Stand the next month, Sweet Brinley's stand, in honor of Brinley. Alex's Lemonade Stand is one of our very favorite organizations that raises funds for pediatric cancer research. It was started by a little girl, Alexandra Scott, a 4 year old who was fighting neuroblastoma and wanted to do something to help find a cure, so she decided to hold a lemonade stand in her front yard. By the time she passed away in 2004, at the age of 8 years old, she and her family had raised over $1 million dollars. Her parents continued the organization that bears her name, and to this day they have raised over $40 million dollars.

Last year we decided to host our first Grand Stand during September (Childhood Cancer Awareness Month), with a goal of 10,000 going towards life-saving research for pediatric cancer. We ended up with $7,312, great for our first year. This year we want to meet that goal of 10,000 and are asking for your help. Want to be involved yet? GREAT, here are the ways you can help:

  • Hold an Alex's Lemonade Stand in your neighborhood under our Grand Stand. I would provide cups and lemonade, signs, posters, etc. You could hold it the day of our stand (September 17th) or the week before. It could be at a local store, in your neighborhood, whatever works for you. You would finish up by coming to the party in the afternoon where we will all meet together at the central stand location. We are trying to get at least 10 families/volunteers to participate in this and will give more details if you think you are interested. You can e-mail me at We would love to spread our Grand Stand all over the place this year if we can, the more people recognize Alex's Lemonade Stand the better.
  • Volunteer at the stand. Just give us the hours you can be there and we will give you a job. It could be anything from selling things, running the bounce house, serving lemonade, blowing up balloons, easy stuff like that.
  • Make a cash donation. You can donate online at Honestly, amounts are not important. Something as simple as $5 shows you care. Our first year we had an elderly man write a check for $1. It was something none of us will ever forget. I donated $1 at the grocery store the other day for a fundraiser and guess what? They didn't spit in my face! They didn't say "is that all?" They didn't laugh, or ask me if I was poor, or tell me to keep my stinkin' dollar. They thanked me! With great big smiles!
  • Donate a raffle item. Our raffle was a huge success last year, and really fun!! So we would love to make it bigger this year. If you would like to contribute something to it we would be so grateful! There will also be drawings for gift cards, so any donations to restaurants or shopping would be wonderful.
  • Show up with your family. Show your kids that we are here in this world to help other people, even if it doesn't directly affect us. I'm sure they won't mind the free bounce house, carnival games, face painting, dancing, prizes, food (okay the food's not free..but the lemonade is!)
  • We are also looking for a food vendor that would be able to serve food on-site and donate the proceeds. Just thought I'd throw that out there too :)
The details:

When: September 17, 2011

Where: Veteran's Memorial Park
1985 West 7800 South
West Jordan, UT 84084

Mark your calendars and we hope to see you there. Your support means the world to us. Truly.

Our inaugural CureSearch Walk in Salt Lake City was a HUGE success. I mean HUGE!! When we started committee meetings we set our goal at $50,000 (sounded almost out of reach) and 30 teams. Our team goal was 50 members and $500 (we weren't really fundraising since we have the Alex's Lemonade Stand coming up). Our team ended up with 66 members and $775! To those of you who joined our team, virtual or present, THANK YOU. Words will never express our gratitude. It was hot, yes. It was a few hours, yes. What you did, that small act (or not so small act) of showing up, or signing up from afar, showed not only us but cancer kids and families in our state that you care about them. You care about their pain, their suffering, their accomplishments, and their losses. Here is our report: Salt Lake City raised over $72,000, had over 40 teams, and 1400 walkers! I was so proud of my state. So very proud. It was an amazing day.

Here is Team Brinley minus a few, we should have taken a shot before the walk.

Brinley's best bud Grizzbee was there, of course! When she saw him she ran up to him and gave him a giant bear hug, no pun intended. We got to hang out with him a lot of the day. We love Grizzbee!!

David stayed up until 2am the night before making this shirt. It was totally worth it, I loved it.
This is Brinley saying hello to her friend Skyler.

Before the walk, they had an Opening Ceremony. They honored those who have lost their battle by a single white balloon released by each person representing a child/loved one lost to cancer. It was very touching and I couldn't stop the tears for these lost lives. Nick's mother was there, so soon after his passing, to represent him and remind me of why we fight.

Then they introduced our cancer fighters/survivors and gave them a metal. Brinley got to say her name in the microphone, to which she was asked how old she was. "Four and a half" was her response. She was then asked "when will you be five?" With all the confidence in the world, knowing she had the right answer, she said "on my birthday." We had a good laugh.

Here they are. The reasons we walk. How do I begin to tell you what these kids mean to me. They are our friends, we know many of them, but whether we know them or not, we are connected to each one of them in a way that is beyond my capacity to describe.

Our kids started out the walk for us, we walked about 1.5 miles, a very casual walk. There were so many people there walking. It was quite the sight.

This was our walk committee. Each one of us on a different road, but each one of us also intertwined in the world of childhood cancer. After the walk, we had a little "group hug" and I looked these ladies in the eyes and was overwhelmed with a sense of love and appreciation for each one of them. What an amazing blessing it is to know what is in their hearts without having to ask them, or have it described to me, because it was in my heart also. Salt Lake City did us proud. Thank you for caring.

Although the walk was a huge success, I have found myself in a difficult place. The night before the walk, one of my friends and neighbor sent me a text that her son's brain cancer had relapsed again, for the last time. There is no more the doctors can pull out of their sleeve for him. Many of us walked for him too. He was in my heart and mind, and has been ever since. They are going to Disneyland to make some memories before his symptoms set in and he is unable to enjoy things. This has weighted so heavy on my heart. Daniel is so special. He will soon have a baby brother, and he probably will not be able to meet him, not is this world at least. We brought him some gifts from our cancer mom's group, and he just kept saying "I'm so loved" as he opened each gift. He is right.

This is a time where I don't think my heart can be in this section of the world any longer. There is a place you feel stuck sometimes, a place somewhere between running away and fighting harder. The pain can be so debilitating, yet keep you going at the same time. I speak of my pain, but I can only imagine the pain in their hearts, knowing he will soon be gone from their loving arms. Now that is pain.

Some friends are having a bake sale for them to cover family expenses. If you would like to help them, please stop by. It would be nice if we could cushion a little of their burden this way.

Friday, July 15 3:00 - 8:00pm
LDS Church 7000 South 2700 West, West Jordan, UT

Again, thank you for reading. I know I have slowed down with writing, but we are still here. Brinley is doing wonderful and we are grateful for every day that our family is healthy and happy.