Monday, September 23, 2013

Little Miss Incredible!

We set out for this second round, expecting at least a month long stay, but Miss Cami has done incredibly well and she shocked the Doctors with how quickly her levels came up this round!  We were at the hospital for 13 days (which is almost unheard of after the amount of chemo Cami got).  We are so thankful that her body is so strong and she is able to jump right back up after being knocked down.  

Cami all packed up.. ready to kick some cancer tooshy!

Yes, Cami bounced back quickly, but this round has been really rough on our little pumpkin, and we are only half way done!  After just a few days of chemo, she had major bone and muscle pain, sores throughout her mouth and gums, she was so nauseous even while on continuous zofran and she just had a general feeling of "ickiness".  She turned down visitors (which is very unlike Cami), she slept a lot, and she just wasn't her happy self.

In the first 5 days, Cami got very high doses of chemotherapy.  She was given two different kinds of chemos called: Etoposide (or VP-16) and Cyclophosphamide (or Cytoxan).  The Cytoxan gave Cami a weird side-effect and about 5 minutes after they pushed it, her nose felt like it was on fire and almost like she was under water and breathed in a bunch of water.  It was miserable for her, so she was put on lots of pain meds to help with that reaction.

Cami getting one of her chemo's.  
The nurses have to gown up to protect themselves from getting any of the toxic chemicals on them.  

The chemo's were pushed through her central line at different times throughout day.  These particular chemo's can really damage the bladder and kidney, so they gave an additional medication called Mesna with them to help protect the bladder, they also drip IV fluids at a fast pace all day and night so that the chemo doesn't just sit in her bladder.  This was the exhausting part.  She had to get up every 2-3 hours day and night.  It wouldn't have been so hard if she could just jump out of bed like a normal kid, but she can't.  She had a giant IV pole attached to her and she needed our help unplugging it and rolling it to the restroom each time.  Then we had the nurses and techs coming in through the night to change her fluids, give her meds, take her temp, check her blood pressure, and heart rate, etc, etc... it is just EXHAUSTING!  Around day 3 Cami started to feel the effects of the chemotherapy.  She was very nauseous and so tired.

Cami also started to puff up and retain water and her glucose and sodium dropped drastically. The Doctor's figured out that Cami had what is called SIADH (Syndrome of Inappropriate Anti Diuretic Hormone) this is a side effect of the chemo's and it is basically when the body stops flushing fluid, instead it retains fluid.  This is a hard situation, because they have NO CHOICE but to give her bags and bags of fluid in order to protect her bladder, but at the same time she was swelling and SO uncomfortable and those levels were dangerously low!  Cami was SO puffy she said "mom, my skin feels like a pair of skinny jeans".  Once they finished her chemo, they unhooked her from her fluids and restricted her fluid intake.  Within 24 hours, her puffiness had gone down SO much!  She lost 3 pounds of water weight in 2 days after that!  She is still retaining a little fluid, but they say it will flush out within a few weeks.  We are so happy that she is feeling better and that she is more comfortable now!  Her glucose and sodium levels are now on the rise and we couldn't be happier!

These pictures were taken only ONE week apart!  
This shows just how much fluid her poor body was holding!

They encouraged lots of walking while her levels were high enough to help get rid of that extra fluid.  She LOVED pushing all her animals in the wheelchair!

OK, now that I have updated you all on her health, I want to let you know the little information we have been given about her transplant.  As most of you know, Cami has ONE perfect match out of the TEN MILLION people that are enrolled to be donors on the registry.  Here's what we know about her one match:  he is a male in his 20's, who joined the registry just one or two years ago.  The marrow registry keeps everything VERY confidential to protect both the donor and the recipient.  The potential CURE for our daughter is literally walking around in his body and we have been on pins and needles waiting to hear his response.

Well, just a few day's ago we heard the AMAZING news that he is willing to move forward and donate to our Cami!  What an amazing gift!  We are so grateful to this man for the selfless act he is about to perform.  I keep trying to picture in my mind who this man is that is walking around with the key to saving Cami's life.  He may not even know how crucial he is to us!

The only thing he knows is that she is an 8 year old girl with cancer, who needs his marrow to stay alive.  Wow.  I am just amazed at this man that I don't even know.

Meanwhile, back at home... Pat and I have been trying to hold our little family together the best way we know how.  We switch off every other night sleeping at the hospital so that Caden can at least get a small dose of each parent.  We enrolled him in a new preschool that goes all day!  Honestly, this is one of the things that makes me the saddest.  This is supposed to be my last year with a preschooler at home.  He is my little buddy and I LOVE our special days together.  I miss him and I hate that I never get time with him and by the time I DO get to see him, I am so emotional and exhausted it is difficult to keep up.  Caden is really struggling with all of this change.  I'm sure he feels abandoned at times and it breaks my heart.  This has been just about as hard on Caden as it has on Cami.  I love my little bubba so much and I can't wait for our playful days together again.  

First day at his new preschool

splashing makes us happy

Caden loves to visit his sister and he is always very concerned about her.
He washes his hands the second he gets home from school "so his sister can be healthy".  
Oh, bubba.. I love you!

Speaking of barely holding it together, I just have to say that there is NO WAY I could ever pull this off without my amazing husband!  Pat has been incredible and  is always picking up my slack.  He can always make Cami giggle (even in her worst times) and he can always turn a hard situation into something fun.  I am so thankful that my kids get to call him dad.  

Pat planned a special Daddy Daughter date on one of his nights at the hospital:
a candlelight dinner on the hospital patio.  Complete with Cheesecake factory and flowers.  Thank you Jess and Lindsay for helping set this up!

So many people have helped us get through the last few weeks.  Not a day goes by where I don't get a text, a phone call, an email or a Facebook message asking what can be done or offering words of encouragement and strength.  We have had so much support and there is NO WAY that we could get through this without the team of people holding things together for us.  

BUT, the one person I really needed was my sis.  Jessie is my only sibling and growing up it was just me, my mom, and Jessie.  We are very close and I just NEEDED my sis through this.  Unfortunately, Jessie lives in North Carolina with her little family and so, for a month of torture we tried connecting through Facetime and phone calls, but it is just not the same!  Some sweet friends of ours gave buddy passes to Jessie and her kids and she was able to make it out for a week!  It was just the pick-me-up I needed.  Oh I love my sis.  Just having her around made things better.  

The minute we got the word she could go home, 
Cami packed up as fast as she could and scooted out of there as fast as her little feet could go!

Now, we are home for 8 days and them back to the hospital for the second half of chemo round # 2!

Saturday, September 14, 2013

When you're the best of friends...

This post is extremely difficult to write.  One of the many reasons that Cami's relapse has been so difficult on her is because she is still grieving.  We all are.  Just 1 month before we got the news that Cami's cancer had returned, she spoke at her best friends funeral.  Her best friend, who was taken by the same disease she is still fighting.  Cami is scared.  She understands it all far too well and mostly, she misses her friend deeply.

For those of you who don't know, Millie Flamm was Cami's best friend.  Millie had cancer too.  These two girls were introduced when Cami was diagnosed with the same cancer just 6 months after Millie's diagnosis.  They fought right along side each other for 2 years.  They traveled together, sent messages and met up during clinic visits to cheer each other up.  The day after Millie went off treatment, they received the devastating news.  Millie had relapsed.  We were heartbroken and we had no idea what to do to help as we watched our dear friends prepare for their second battle.  Cami LOVED visiting Millie in the hospital!  It was the one thing we could do to help cheer her up.  Cami didn't have questions about the tubes, or the medicines, and she didn't worry about nurses or doctors like some other kids might.  Millie and Cami just played together.  Like normal little girls.  Their giggles could often be heard all the way down the hospital hallways.  Cami was always happier after visiting Millie and Millie was happier when Cami visited.  They were quite the little pair.  Millie went through so much, but her strength through it all was incredible.  We now understand that Cami needed to witness Millie's strength firsthand to help her through the trials she faces today.  Millie's fight has ended and we smile to think of her dancing tube free and pain free through heaven.  Millie is sorely missed and as we sit in Cami's hospital rooms day in and day out, we can't help but remember the happy memories shared within these walls with sweet Millie.  We miss Millie daily and because of her and her parents as examples, we are able to stay strong in some of the hardest of hard times.  Millie continues to shine her brightness down around Cami each day as she fights.  We will always be grateful we were lucky enough to bask in the Millie light.

Millie is still making a huge difference in so many people's lives and her legacy lives on through Millie's Princess Foundation.  Brady and Amanda (Millie's parents) have made Cami one of Millie's princesses and we are so honored!

Please take a minute to watch the video they put together of these two sweet girls-

Thank you Brady, Amanda and Austin for showing us strength and for being there for us at such a difficult time in your lives.  We will never forget the love you have shown us, we know it cannot be easy.  We love you guys.  We know that Millie is so very proud.

Friday, September 13, 2013

Calling all Super Heroes!

Super Heroes: Cami and her cancer buddies need your help!  Grab your mask and throw on your cape to come walk with us at the Salt Lake City CureSearch walk on October 5th!

Did you know that September is childhood cancer awareness month?  I know many of you already came out to support us at the Kisses For Cami event and we are so very grateful!  We in NO WAY expect you to come to all of these events we are posting about, but because it is childhood cancer awareness month, I wanted to give you every opportunity to do something for these kids!  

Because you are reading this blog, you know that the cure rates for childhood cancer are obviously far from perfect.  Cami had one of the "good" kinds of cancers, the kind that is the most treatable.. CURABLE even!  Well, those odds didn't work out so well for us, and for far too many others if you ask me!  Too many kids are dying from childhood cancer and we need to do something about it!  Now is your chance!  Sign up for Cami's PS I Adore You team!  We are all dressing as super heroes to stomp out childhood cancer and our shirts will be available on PS I Adore You next week!

SO...what is CureSearch exactly?
CureSearch funds the Children's Oncology Group (or COG), the world's largest children's cancer research collaborative.  Primary Children's is a COG hospital (meaning that most of the oncology staff and Doctors participate in childhood cancer research or the studies that the COG provides).  This means they give money to researchers who are working DIRECTLY with our kids.  This special group of medical professionals are trying to find better treatment plans for our kids, less side effects, and ultimately a CURE to childhood cancer.  How amazing is that?!?  The best part?  97% of donations from this walk will go DIRECTLY to this amazing research.  This is SO SO SO rare in any organization.. 97%-wow!!

All of these children suffer from childhood cancer...just look at those smiles!

Here are some idea's of ways you can help support CureSearch...
#1- Cami's team PS I Adore You!  Come walk with us on October 5th at Sugar House Park!  It is only $10 for adults and kids are FREE!  (Remember every cent of your $10 will go towards finding a CURE for childhood cancer.)  
#2-  Many of you wont be able to physically come and walk with us that day.  Thats OK!  You can sign up to be a virtual walker and still be a part of our team.  Click here to register to be a virtual walker on our team!  Make sure you select the "virtual walker" option.
#3- Donate to Cami's team.  You can donate ANY amount, remember it ALL goes to finding a CURE for the kids.  Click here to donate.
#4- Get your company involved.  We are looking for corporate sponsorship.  If your company is interested in raising money for CureSearch, if they do a dollar match program, if they want to support and advertise plus get a nice tax write-off please contact me at
#5- Volunteer.  You can host a bake/garage/lemonade sale, help us pass out flyers, hang posters, or volunteer the day of the event.  Email me at if you'd like to help out.
#6- Tell EVERYONE you know.  Link this post to your facebook, blog and twitter.  Tell your family and friends to participate.  People can sign up/donate to be on Cami's team, create their own team, or donate to CureSearch in general.  No matter how you chose to participate, it is a great cause worthy of LOTS of support.  

Please try to make it to this fun walk!  Not only will you be helping these kids, it is going to be a BLAST!  They will have live entertainment, activities for the kids, lots of great food, and plenty of good company.  It is sure to be a day the entire family will want to make a tradition year after year.  We cant wait to see you there! 

 Cami's team from last years walk

 Here's our little fam at the 2010 walk

(and don't forget your super hero costumes)!!!

Watch this short clip explaining just how underfunded Childhood Cancer Research is.  

Thank You.

We have had very full hearts the last few days as we try to process the amount of love we were shown at the Kisses for Cami event on Saturday.  When we pulled into that parking lot and saw the line of people waiting to swab their cheeks we were stunned!  I immediately burst into tears.  How wonderful it is to live in a community where people come together to support a little girl in need.  I was told that they swabbed over 450 people that day and ran out of kits!  WOW!  To think that even one of those people may some day save a life makes that day more dear.

So many people that we love (and some we have never even met, came out to help)-

Check out the Cami-swag!
(thanks Adcentives West.. you guys have ALWAYS been so wonderful to Cami!)
She LOVES her swag goodies!

The sweetest notes were written on a GIANT bouquet of flowers for Cami!  
She LOVED them! 

Cami's little BBF's from our neighborhood made their own DARLING lemonade stand!  
Love these girls- thanks cute little ladies!

Even Annie the therapy dog made it out!  
Cami loves the therapy dogs who visit her in the hospital!

Great Grandma even made it to the big day!  Love you Ne-Ne!

Just look at this line of people who came out to swab!  It was at least a 45 minute wait!

Cami was SO happy that night!!  
We were grateful that she finally got a glimpse of the army that is behind her!  

She dunked her dad in the dunk tank...

We LOVED the Photo Booth!
(big thanks to Funny Face Photo Booth)

and the silly mascots made Cami giggle.  
We love you guys!  Thanks for coming out!

And when it rained... everyone DANCED!
A little rain can't bring us down (um.. or a LOT)!

These girls pulled off an INCREDIBLE event!  They refused to let me help and insisted that I spend time with my family.  They took care of EVERYTHING!  These girls are amazing friends and outstanding people.  We will forever be in their debt and we hope to one day pay it forward to another family in need.  Thank you for everything girls.  Thank you for showing us such love.  We felt it and it will truly carry us through this.

Love you girls so much!

“It's not how much we give but how much love we put into giving.” 

Thank you to M.K. Nash Photography for capturing this event so beautifully!