Thursday, September 30, 2010
WOW a lot has happened since my last post. We have been keeping busy while Cam's levels are up. Ringling Brothers came to town and they did an elephant parade on opening day.
The kids LOVED it!
waiting for the parade to start..
The Elephants really held on to each others tails!
For some reason I thought they only did this in the movies.
It was the cutest thing!
THEN later that night we got to go with Hope Kids to the circus.
They gave all the kids special passes to go down before it started. They got to try on costumes, meet the performers and watch them practice.
My kids thought they WERE the performers.
These girls are all the EXACT same age. They all have leukemia. They are so cute together. Cami calls them her "baldie friends".
Millie. Cami. Alivia.
They are all so brave! It almost brings tears to my eyes seeing them together and knowing what they have all been through. This was the first time Cami and Alivia had met (in person) and here they are holding hands. There is a bond that runs deep when you share the same battle.
I had to get one of Caden in there.
He was a little crazy that night. Oh who am I kidding..he's crazy EVERY night!
Check out his snow cone stash..
Then we went to a very special event put on in honor of Cami.
Some very amazing and gifted dancers (whom we don't even know) put on a show for Cami. They fittingly named it...
"A Circus for Cami".
Jessie, Grandma Di-Di and me watching the show.
They asked Cami to do a solo.
She danced to "She's a Butterfly" it was VERY emotional and sweet.
She did a beautiful job. I am so proud of her!
Thank you to these dancers for providing a night of fun!
It was a great night and Cami felt so special. Thank you to all the beautiful dancers who gave their time and efforts to make this a huge success and all for complete strangers. It was touching to say the least.
Monday, September 20, 2010
Cami had a smooth clinic visit today. Her ANC was high enough to up her dose of Methotrexate, so we are expecting a few hard days. Last time she had major headaches, nausea, and leg pains. Not fun, but last week they seemed less painful after a few days.
Weight: 18.4kg (40.5 lbs.)
Here is a shot of Cam's PORT hooked up to her chemo. The white oval has a needle on the other end, that is what they push into her skin to "access her port". It is scary to watch, but she has gotten really good at this part!
She is so brave.
Here she is getting her Vincristine push.
She heard the nurse talking about her push (meaning they push it through manually), she said "Vin who's gonna push me?"
Wednesday, September 15, 2010
Cami was planning on starting Kindergarten this year and she was bummed when the Doctors said she couldn't go. They did give her permission to go to a private preschool as long as her levels are higher than 1000. She was THRILLED when she found out she'd be going back to Miss Michelle's Small Stars Preschool. She absolutely adores it there, and guess what? Her first day back was "hat day"! How perfect is that? She was beyond excited because she has SO many adorable hats to choose from. Thanks Miss Michelle for fitting Cami in at the last minute, and thanks to all the kids and parents going the extra mile to keep Cami healthy.
We get to have a bit of normalcy in our lives because of you.
Sunday, September 12, 2010
September is Childhood awareness month...
Gold is the color of Childhood Cancer. Wear it proudly.
I am still learning all I can about childhood cancer, please do the same.
We learned the hard way that this can happen to ANY child at ANY time, lets do all we can to help find the cause and cure!
You can visit these sites for info and to donate-
*if you work for a corporation, tell them about Cami and encourage them to donate to one of these charities this year.
--I also want to mention that Chili's is supporting St. Jude all month long and on September 27th they are donating ALL profits to St. Jude Children's Research Hospital. If you can do nothing more, please go eat at Chili's on September 27th.
A few other foundations I want to talk about are:
These are two organizations that have touched us SO deeply, they have helped give us back the light in our Cami's eyes. They aren't looking to cure cancer, they are looking to cure the heartache that comes along with the diagnosis.
We really couldn't make it through all this without them!
We did a 5K walk with Hope Kids yesterday. It was a blast and I think they raised about $40,000! Thank you to all of you who helped Cami raise money for this amazing group! We LOVE Hope Kids!
We went on train rides-
There was dancing-
Caden got to meet Darth-
Cami was attacked by this bee,
he just loved her (and who wouldn't?)
Grandma Di-Di snuggled up to her Raccoon buddy
and best of all Cami was in heaven with all the princesses!
WOW this Cinderella made her week!
Thursday, September 9, 2010
Today was another clinic day, Cami was excited because she didn't have to see the "sleepy Doctors" plus Grandma Di-Di got to come. Cami also started the next phase of treatment today, called Standard Interim Maintenance. She will be going to clinic every 10 days to get a Methotrexate infusion and Vincristine push. For the next 57 days they will up her dose of Methotrexate each visit as long as her counts stay high enough. We also found out that if everything goes as planned, Cami's final day of treatment will be exactly 2 years from today 9/9/12. YAY!!
Common side effect for Vincristine: Constipation; hair loss; nausea; vomiting. Loss of deep–tendon reflexes, or "foot drop".
Common side effects for Methotrexate: Acne; chills and fever; dizziness; flushing; general body discomfort; hair loss; headache; itching; loss of appetite; lowered resistance to infection; nausea; sensitivity to sunlight; sore throat; speech impairment; stomach pain; swelling of the breast; unusual tiredness; vomiting.
Weight: 18.6kg (40.9 lbs.)
ANC: 1600 High enough to start school next week.. YAY!!
We love Dr. Verma-
I got my mini lesson on this phase-
getting her port accessed, or "poke" as Cami calls it.
This is the hardest part.
a hug from Froggy always makes her feel better
A clinic gift doesn't hurt either (thanks Cali buds)
Doing a craft while she gets her Methotrexate infusion
Cami was SO excited to have Grandma Di-Di come to clinic today, she just had to show her all the cool things around the hospital...
The magic fish tank elevators-
the wishing waterfall (she's kissing her coin before tossing it in)-
and her FAVORITE the rainbow pony-
Saturday, September 4, 2010
Hearing that your child has cancer is one of the most devastating, life altering things a parent can hear. It feels like your whole world is caving in on you all at once and there is nothing you can do to stop it. Its was a HUGE "perspective moment" for me. Suddenly the pile of laundry, what to make for dinner, the disagreement with Pat, the spilled juice on my newly mopped floor all just don't seem to matter anymore. It still takes practice, but I am trying my hardest to appreciate my kids, to listen to what they are saying instead of just nodding and saying "oh, thats great honey". Im trying to soak them up. Enjoy every second I have with them.
This is all so easy to write about as I am typing and they are sleeping (looking so cute and peaceful), but it is a lot harder to put it into action on a day to day basis. At times it seems impossible to be loving, gentle and kind when life is happening and things get crazy all at once.. when all I want to do is pull my hair out and scream!! Lately Caden has been getting his 2 year old molars- that combined with not being able to go anywhere and being shipped off to babysitter after babysitter he has basically been a nightmare. At times the last week I have wanted to scream and lock myself in my room.
Then today I was given another "perspective moment". I think we are all given these events or moments in our lives where we are forced to take a step back and think to ourselves: I can do better. I will never take my loved ones for granted again, even through the hard times. Its actually following through that's the hard part.
Today was My Grandma Betty's funeral. Grandma was the sweetest, kindest, most loving, giving, thoughtful amazing woman. I wish I could show you all she did for her family throughout her life. If I could, I would show you the fabulous meals she made us, each one was set with china, linens, and a meal I couldn't describe even if I tried. I would show you her house, how organized and neat it always was and how she welcomed anyone and everyone to her perfectly set dinner table. I would show you her career at Hill Air Force Base and how she was the top ranked civilian (of men and women) when she retired. I would show you the amazing seamstress she was and all the gorgeous dresses she made all 6 of her granddaughters. I would show you so many things about this amazing Grandma of mine, but mostly I would show you what an example she was of putting her family first and loving us without judgment, or expectations. She was a great example to me, and I am so grateful I was blessed to have her as my Grandma. I am so grateful for the lessons she is teaching me even after she is gone. I know she is watching over our family and especially little Cami as she goes through this difficult trial.
If I could live my like with even a fraction of the love, grace, compassion, and service this woman lived hers I would be happy. What an example she was. I am so grateful that today I was, once again, reminded of how fragile life is and how fast it goes by. I sure needed that reminder because I was loosing it to a certain teething 2 year old.
Love you Grandma Betty, I cant wait to give you a big squeeze again someday!
Grandma Betty "soaking up" our sweet, newborn Cami.
You can just feel the unconditional love she has in this photo.
Friday, September 3, 2010
(Cami was hammin' it up for the camera.. I DID not, I repeat DID NOT pose her this way -what a goof)
My sweet Mom had the best idea to write to all her friends and family asking if they would send Cami a card for her birthday. She sent a mass email out and soon her friends were passing the word along to their friends and family.
About a week before her birthday we started getting cards in the mail, then came packages, large envelopes, and more cards-cards-cards! It started to become the best part of Cami's day, walking to the mailbox to check for birthday cards. We saved them all to open on her birthday. As the mail and packages piled up she could hardly stand the wait.
She was so excited when her birthday rolled around. We had so much fun opening all of her cards. It was unbelievable the amount of cards she received, it was well over 150. Complete strangers sent her toys, cards, letters, pictures, cuddly animals, craft stuff, postcards. We got things from England, the Caribbean, Scotland, Australia, Holland, Czech Republic, Africa, Japan, Samoa and all over the USA. It makes me emotional just thinking about how truly kind people are. There are so many GOOD people in this world who have made such a huge difference in our lives.
After opening, reading, and hanging them up Cami said "look how many people love me Mommy". I always read Cami the comments she gets on this blog, but this was something she could see and feel. She was really blown away by how many people support her. It was also very therapeutic for me to feel the love pouring out of each and every letter. The words written were so beautiful, they gave me strength, and lifted me up. It was an overwhelming feeling.
Thank you to everyone who participated in sending Cami a card or getting the word out. She LOVES getting mail, and this really gave her something to look forward to each and every day. When there's not a lot to look forward to, this was HUGE for us!
Thank you, Thank you, Thank you!!!
Because this helped to boost Cami so much, we would like to try and continue to get letters, cards, drawings or postcards for Cami throughout the year. If she gets 1 piece of mail a week she would be THRILLED! Like I said before, having something to look forward to helps so much at this time. Check out how much this helped our friend Millie get through her Chemo treatments here.
If you'd like to send Cami some snail mail, leave a comment with your email address or email me at email@example.com and I will send you our address.
Thank you all SO very much!!!