Tuesday, May 24, 2011

Please HELP!


Things are calming down in our house and I am slowly, but surely recovering from this nasty pneumonia.  Summer is upon us and we couldn't be more excited!  We are trying to pack our summer full of fun because the last 10 months we have been stuck inside 90% of the time and we have a lot of making up to do.  As the weather gets nicer, we are seeing lots of walks and races pop up.  This is so exciting, but it can also be confusing.  As much as we want to, our family can not possibly support all of the many cancer walks out there.  You really have to do your research when it comes to these fundraisers.  I think it is important to make sure the money our family raises is going EXACTLY where we want it to go (to finding a CURE for these cancer kids).  With the help of some of the more "seasoned" cancer mom's, we have done the research and found the right orginization for us...  


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 some of the oncology staff and Doctors participate in childhood cancer research).  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?  100% of donations will go DIRECTLY to this amazing research.  This is SO SO SO rare in any organization.. 100%-wow!!  I was floored when I found out that CureSearch was holding their first ever walk in Salt Lake City!  This means that our family will have a chance to participate in raising money for something that has become incredibly close to our hearts...and so will YOU!

The other great news is that the walk is July 9th, 2011.  This is the one year anniversary since Cami was diagnosed and our world was changed forever.  We are using this walk as a celebration of Cami and her first year FIGHTING and WINNING!  She has made it through so much and she has always come out with a smile.  This little girl is amazing and we want to show her our support by rallying around her at this walk.

BUT we need your HELP!!!
I am calling all Cami supporters.  Please come be part of the CURE for childhood cancer.  If you have been touched by Cami and her cancer buddies, if you have learned from their strength and courage, if you have read this blog and wondered how you can help...this is your chance!  These kids didn't ask to get cancer and they certainly don't deserve all the pain and suffering that goes along with it.  They are too young to speak for themselves.  We need to be their advocates, and their voices.  We may not be able to take away their pain, but together we can help them to have the chance at a better life and better cure.

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

Here's what you need to do...
There are many ways you can help our family make this fund raiser a HUGE GIGANTIC success.

#1- Join Cami's CURE crew.  Come walk with us on July 9th 2011 at 9AM for the CureSearch walk.  It will be held at Liberty Park in Salt Lake City, Utah.  It is only $10 to walk and show your support, remember every cent of your $10 will go towards finding a CURE for childhood cancer.  We are going to celebrate Cami's first year of kicking cancer's butt!  Click here to go to Cami's CURE Crew team page and sign up TODAY!

#2- Become a virtual walker on Cami's CURE Crew.  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 CURE Crew.  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 chelseacarver@gmail.com

#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 chelseacarver@gmail.com if you'd like to help out.

#6- Tell EVERYONE you know.  Link this blog 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.    

Not only will you be helping these kids, it is going to be a BLAST!  We 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! 

Thank you for your support!  
We are honored to have such wonderful friends and family surrounding us.  

**a HUGE thank you to Jen Herem Photography for taking all of these amazing photos.**

Thursday, May 19, 2011

Whirlwind.

We have been in quite the whirl-wind around here the last couple weeks.  It all started on Mothers day.   I woke up feeling extremely sick, I was having a hard time breathing and I just knew something wasn't right.  Cami was so upset because she had big plans for me on Mothers day, but we thought it was best I stay away from the kids so Cami wouldn't catch whatever I had.  I came to the conclusion that I was coming down with pneumonia and needed to start on some antibiotics ASAP, so off I went to Instacare.  When I got there, they said my heart rate was really high and my blood pressure was way too low.  They did a chest x-ray and it came back that I had moderate pnemonia in my right lung and a little bit starting in my left lung.  They sent me on my way with a perscription antibiotic and told me to get lots of sleep.  The rest of the day things got worse and then unbearable.  The Doctor at Instacare said I should start feeling better after being on the antibiotics for 24, well this was NOT happening.  Things were definitely getting worse and we thought it was best I get checked again, I was really struggling to breathe and it was getting scary.  When we got to the ER, they took one look at me and rushed me back.  My lips were blue and I wasn't getting a lot of oxygen.  My heart rate went up to 160 and my oxygen was way too low.  They hooked me up to and IV immediately, gave me fluids, more antibiotics, they gave me an inhaler, a breathing treatment, they took blood to test for deeper infections, and did another x-ray.  When my x-ray came back, they were able to compare it to the one I had gotten at Instacare.  They were shocked at how severe the pneumonia had gotten in just 24 hours.  They were also very concerned about my heart rate, blood pressure and oxygen levels.  

They told me that they wanted to keep me at the hospital at least overnight, but with IV antibiotics they expected me to recover in a day or two.  Here I am in the ER feeling totally crappy.  



The next few days were a blur.  The Doctors found fluid surrounding my lungs on both sides, so they had to remove it with a giant needle.  They poked that thing into my back and sucked the fluid out multiple times.  It was very painful, but it helped me to breathe a little easier.  Even with the IV antibiotics the pneumonia continued to get worse.  I had a team of Doctors trying to figure out why I wasn't getting better and they were starting to run out of ideas.

Here is the Doctor with the HUGE needle and then the vials of fluid they got out.

ouch...



Here I am doing some of my breathing treatments.  Fun stuff!
 At one point I had 3 different IV's in and they took blood at least 3 different times each day.  My veins are always really hard to find and they burst easily.  I was so bruised and all my veins were mush.  They started to run out of places to poke me.

After a few days with no improvement, they brought in a lung specialist.  Dr. Pearl ran more tests on my blood.  He found that one of the antibodies in my blood was low, this suggests that I have some sort of immune disorder that has never been diagnosed.  He decided that I needed IVIG which is basically a replacement of those antibodies I was missing.  The only problem is that IVIG can cause serious complications and they had no way of knowing how I would react to this intense drug, but without it, Dr. Peal felt that the pneumonia would just continue to get worse and worse.  


We decided to go ahead and get the IVIG infusion.  It was really our only choice at this point.  Sure enough I had a reaction.  I got the worst chills I've ever had and my oxygen levels dropped so low they about sent me to the ICU.  Once they stopped the infusion, I felt better and my levels came back up...thank heavens!   The next day my pneumonia had improved a little, proving that even the small amount of IVIG that made it into my body had started to work.  Doctor Pearl wanted me to finish the infusion so that night they hooked me up, gave me lots of drugs to help with any reactions and we started the infusion again.  It was pretty scary for the first hour, but they ran it slow and it went smoothly.  I was able to go home 2 days later with an oxygen tank and strict orders to take it easy.  I spent 6 days in the hospital and boy am I glad to be home.


This is where Pat sat 90% of the time.  He just stared at my monitors especially after I was almost sent to the ICU.  I am so grateful to have such a caring husband who stayed with me every second.


I was so excited when my kids got to come visit, I missed them so much and little Cami was particularly worried about me.  We had to be very careful with her and I am still trying to stay away, but just to hold those kids felt so good, it was the best medicine.   








 I have such great family and friends who sent flowers, treats, blankets and who took care of my house and kids so Pat could be with me in the hospital.  Thank you to all the many people who helped our family once again as we were once again thrust into a medical whirlwind.  
We couldn't do it without all the amazing support!
Thank you!!!

 


I just have to add that most the time I spent in the hospital all I could do was think about the little cancer kids.  It was very emotional for me to go through this as I thought of all these kids go through.  I really think that I was put through this so I could feel just a fraction of what they deal with on a day to day basis.  It was really hard on me to live in a hospital bed and I was only there for 6 days.  We have friends who live in the hospital for MONTHS at a time.  I just cant imagine being a restless kid stuck in one of those beds.  It was so painful for me to have my IV's and get blood drawn all the time, but these kids are poked over and over for days at a time (and in their chest, which is MUCH worse than in an arm).  I was complaining earlier in this post about getting the fluid removed from my back, but these children get back pokes all the time!  By the time they are off treatment they will have gone through hundreds (if not, thousands of back pokes).   I am starting to feel better and my lungs are healing slowly, but some of these kids never fully heal and live with side effects for the rest of their lives.  After going through this in a small way myself, I just have so much more compassion and love for these kids.  They go through so much and they do it all with a smile.  I know I couldn't handle what these little kids were dealt.  Im just not that strong.  I cant ever describe how much I look up to these amazingly strong kids.  Each one of them is a true hero and example of strength and endurance.  I am so touched and honored to know these kids and I feel blessed that we have Cami's example of strength and courage in my home.  
I am so proud of my little cancer cutie!