Best buds...

Let me just start off by saying that I love the circle we live in. We couldn't have asked for better neighbors. Every night you can find kids playing and adults chatting outside. There is usually something fun going on outside our house. I know I can call any of my neighbors at anytime and they would do anything for me. To top it all off Cami's two best friends in the world live right across the street. These three adore each other. If Ryann and Elle are doing something, you better believe Cam is right there doing it with them!

Cam's hair is starting to really come out now and it is pretty scary and shocking for her to see. Another tip they gave us at the hospital was to give her a really short cut so when it falls out there is less in the chunk, making it seem smaller. She didn't want to cut her hair, but I have been pushing it on her because she gets upset seeing so much coming out.... its traumatizing to say the least! While washing her hair one night, I had a couple big (scary looking) chunks come out and I decided it was hair cutting time. Now I just had to get her on board.

I was so impressed when Ryann's Mom (jessica) called me and told me that Ry-Ry wanted to cut off her long, beautiful hair to support Cami. We decided to have a little haircutting party! Elle Lee (Cam's other little friend) wasn't sure she wanted to make that sacrifice, but she was going to come to the "party" for a trim. We called up Cassy (another friend from our circle, who cuts hair) and she came right away.

Ryann went first to help Cami be brave...

Look at that thick braid she will be donating to locks of love! 12 inches!

Proud Mommy..

Elle Lee's turn! She decided at the last minute to cut her's like the girls!

She got 10 inches to donate to locks of love. What a cutie!

Cami's turn...

Happy girl

So cute!

These girls helped Cam not feel so alone in all of this. I know how hard it was for these girls to let go of their long, "princess" hair. We SO appreciate their sacrifice. We adore these girls and no one else in the world could have made Cami feel better about all of this than these two, because if Ryan and Elle Lee are doing it, then Cami wants to too!!!

Cami, Ryann, and Elle Lee

These are the best friends and neighbors a girl could ask for!

Thanks you guys for the haircutting party!

Jess (Ryanns Mom), Me, Cassy (our amazing hair dresser) and Amy (Elle Lee's Mom)

Hunter Luke Photography

In my last post, I posted about all the GOOD things in life. I think that good people are what make those GOOD things happen. We have been so extremely blessed to be facing this challenge with an army of friends, family, ward, neighbors, friends of friends, and even strangers backing us every step of the way. I could go on and on about all the amazing things these truly GOOD people have done for us over the past 2 weeks, but I don't want to start crying AGAIN today so I will save my "thank you" post for another time.

Today I want to tell you (and show you) just one of those GOOD things that has happened to us...

I think one of the hardest things I have ever had to do as a Mother is to tell my daughter she would be losing her hair. I put it off for 2 days in the hospital. I went over and over in my mind what I would say, and how I would explain to a 4 year old that she would soon be bald. I still get shivers thinking about that conversation with her. I was so grateful when her Child Life specialist (like a therapist for kids) came in just after we had told her. He talked to her about it and then he pulled me aside and told me that for her age it is especially hard for the girls to lose their hair. He explained that at this age they define themselves as "boy" or "girl" thats it. Period. BUT he left me with some great suggestions. One of those being to get her picture taken before her hair starts falling out so she can look back, remember, grieve, and know that it will come back one day. I really liked this suggestion and I mentioned it to my amazing sister-in-law, Natalie. Natalie being Natalie jumped right on it and contacted her favorite photographer, Michelle. When Michelle heard Cam's story she offered to fit her in right away, pick up props for me, meet us anywhere we wanted and did it all on a Sunday evening!

Michelle was so cute with Cami and so patient with her (it was difficult to get her to smile and she was really grumpy... remember the steroids?). I am telling you, Michelle went above and beyond. The pictures turned out better than I ever would have imagined and we will love them forever! Cami loves looking at them, I know she feels beautiful and that is a gift she can hold on to throughout these next 3 years.

Thank you Michelle for your kindness, generosity and talent!

Please visit www.hunterlukephotography.com for more information on this amazing photographer (I am telling you if she can get a good pic out of this grumpy, sick, girl she will wok miracles on you and your family). She wrote did a cute post about her shoot with Cam here.

She sure captured our Camryn's sweet, spunky, spirit. We love them.. thanks again Michelle.. I seriously cant thank you enough!

MAD!

This weekend was a hard one for me. After finding Cam's ANC was high enough to take her out, I immediately started planning something fun we could do as a family. I was thinking parade, carnival or fireworks. I wanted to feel normal again, to just forget about needles, drugs, sanitizer, hair loss, nausea, bills, temperature, chemo and everything else that has somehow crept into our daily lives. I was excited to be outside, around people, and maybe even see a smile on my little Cam's face.

Boy was I wrong! Cami had no interest in going anywhere. She was just too exhausted. I tried to tell her she'd have fun once we got there. I could tell she wanted to make it work for me, but when I stopped thinking about myself and took a good look at her, I knew she just wouldn't enjoy herself. I was pretty bummed and for the first time I realized how unpredictable cancer and chemo can be. I really need to throw all expectations out the window from now on (because otherwise Im going to get disappointed a lot!). I know I will learn to do this and I will get better at rolling with things as they are thrown at us, but this weekend it was hard and I hated it. I hated that my baby is sick, I hated that her childhood will be tainted with doctors, pokes, pain, stares, and just not having any energy. I was mad, mad, MAD!!!

We did get to go out on Saturday night and do a few fireworks with our neighbors, but Cami just sort of stared off into space and wasn't really "there". I kept thinking where is my Cami... I think she is lost to steroids/pain meds/chemo/trauma for awhile.

It all just felt forced. Again, it made me mad.

By Sunday I was really dying to get our little family out of the house to do something "normal". So we called up the Carver troops and we all met at a park. When we got there I asked Cami if she wanted to go explore with me and she just stared off into space. So I grabbed her little hand and took her exploring anyway. The entire time feeling sorry for myself and once again being mad! Then as we were headed up to our blanket in the shade I noticed a different family "troop". They were all walking behind an electric scooter-wheelchair. The young man in the chair was using his mouth to control where he went. He was paralyzed from the neck down. I immediately started to tear up. Here I was walking with my little girl hand in hand and all I could think of was how we didn't get to go to the parade. How I wish I could rewind to the beginning of this weekend. I'd try and appreciate the little moments that I missed out on because I was feeling sorry for myself and even Cami. I have so much to be grateful for and we have so much life to live (even if we ARE stuck at home).

This weekend I learned a valuable lesson. It is such a waste of time to walk around in misery, dwelling on all that is wrong in my life. Cami deserves better, I deserve better, our family deserves better and I am going to stop wasting all of our time on the sad stuff. We will just have to grin and bear it, cry when needed, but ultimately focus on all the good in our life. Because really there is just so much good!

Back to Chemo

Today we went back to the clinic for some more chemo and another bone marrow aspiration.

Her ANC level (body's ability to fight off infection) went from 300 last week (500 and below is the scary area) to 1200 today. Which means she can be more active this weekend. And maybe even go to the bountiful days of 47 thing-a-majigger.  Happy news!

Her bone marrow two weeks ago (at diagnosis) was producing 85% cancerous cells. Last week it was down to 30%. And today the preliminary tests had her in remission (which is less than 5%)!  This is fairly normal (happens in about 80% of the patients), and all it really tells us is that at this stage her body is responding to the chemo.  Now they just keep zapping her with chemo for 2 years so those nasty cancer cells don't come back.  This is great news, but unfortunately wont change her course of treatment.

So things are good so far. The steroids are making her eat like crazy!! And she has very specific cravings (C.P.K. "twirly" mac and cheese for example) and we've caught her rummaging through the fridge at 3 am.

She comes off the steroids for about 2 months on Aug 8th.

Thank you everyone for your prayers and support, the comments you have all left are so touching and have helped us know how much support and strength we have behind us...we are so so so grateful!

getting ready for chemo!  Notice her little cheeks compared to last week :)

getting weight, height and heart rate

waiting for the doc

this is after she got Chemo and is downstairs in the RTU waiting for the "sleep doctors" who put her to sleep to take her bone marrow aspiration. 

you have to understand how hungry this girl was with the steroids and not being able to eat all day.. this is her (at 2PM) listing (or drawing) all of the things she wants to eat when she wakes up.
1.) slushy (in the recovery room)
2.) cheese fries from training table
3.) pickle from Jimmy johns
4.) quesadilla from Chili's
5.) quesadilla cooked at home
6.) wendy's frosty.

She is such a silly little thing.  And for the record, she made sure she received ALL of these items (in order, according to her "list") not to mention 2 grilled cheese sandwiches from Training Table (pictured below).

waking up from sleepy time

Time to eat!!  Slushy first of course with a side of cheese and oreos.

She finished her first grilled cheese (and cheese fries) in about 10 minutes, when she asked us to order another one we laughed.. usually when she get's this meal she'll have maybe 4 small bites and she's done.  She ate 2 full grilled cheese (minus the crusts)+ cheese fries.  These steroids are crazy!!  We didn't know she could fit so much in that tiny body!

Trying on some hats!

Home away from home...

Yesterday Camryn was due for another round of Chemo, so back to the hospital we went. This time instead of going to the ICS, we went to the Bone Marrow Clinic. From what I understand this will be our "home away from home" from now on. This is where she'll get her Chemo, blood drawn, blood transfusions, and we will have our weekly visits with her team of Doctors. She also had to get a bone marrow aspirate and spinal tap again this week. Not a fun procedure!

It all made for a long day, but in the end it wasn't as bad as I thought it would be. I think we can tolerate it once a week. Cam woke up this morning asking if we had to go back again, she was delighted to learn we only have to go once a week. She said "well, that wont be so bad".

Leave it to this girl to look at the glass half full!

Here are some shots Pat got with his phone...

She was automatically on high alert when we walked into this place,

she knows this is where the dreaded "pokes" happen.

she cant eat until after her bone marrow aspirate is done

(because they put her under anesthesia), so she was hungry after.

She had a slushy, 2 string cheeses, chocolate milk and oreo's

while they were giving her chemo.

We do a LOT of distracting while we are there...

Feeling good after they de-accessed (removed needle and tubes)

from her PORT (or chest IV)

Her ANC count (Absolute neutrophil count) was 300

which is low (meaning she cant fight off infections and can get sick easily)

so she had to wear a mask to the car.

They gave her this shirt that says "Im stronger than you" and boy is it true!

She really is one tough cookie!!

She had lots of energy when we came home and my sister had Caden

so we had a picnic in Mom and Dad's bed while watching a movie.

She thought it was the coolest!!!

--Thanks to Nat and Jessie for watching Caden for us,

I know it was a long long day and he can be a stinker!

Love you guys!

Not herself

Not hungry.
Too tired to sing.
Too tired to dance.
Too tired to play.
But never too tired to watch movies

Tired, But In Good Spirits

No Dust Bunnies Here!

I mentioned in my last post that it was a little scary to bring Cami home from the hospital where it is sterile, controlled, and they monitor her every move. Well my amazing sister, the Woods (her in-laws) and some other friends just took care of that for me. They brought a team in here and scrubbed Cami's walls, wiped down every DVD, disinfected every toy, washed every rug, towel and blanket. They Lysoled every inch of my house, vacuumed, dusted, and deep cleaned. They were here for hours. All without me asking or even knowing.

When we carried Cami in, I was brought to tears by the amount of work that had gone into our home. What a gift... what a PERFECT gift! I don't even know what to say. I wish you could smell it here. It just screams CLEAN! They took such a huge burden off our shoulders tonight. Instead of scrubbing, washing and cloroxing I was able to take time and help Cami learn to swallow pills, give Caden (who I've missed terribly) a bath, eat dinner, and visit with those that came to visit.

To top it all off Pats car got a flat while parked at the hospital and our air conditioning stopped working. Clark (our Brother-in-law) has been here for 2 days trying to get it working. My Dad slipped out the door tonight without me noticing and came back with a gigantic portable air conditioner to keep us comfortable until ours gets fixed. Clark and Lenna went to pick up Pats car without a second thought, we have had 3 meals brought to us already and my Mom scheduled the next 10 days for dinners, all our laundry has been done, I have had grocery's and baskets of cleaning supplies brought over, we have been sent gorgeous flowers (which weren't allowed in Cami's room, but we sure are enjoying now -thanks!). Caden has been completely taken care of and he even go to go to the zoo one day (thanks Tony and Nat). People have just done SO SO much! I could go on and on. So many people have reached out and made such a huge difference in these miserable last few days. Oh man, I am just so grateful for our extraordinary friends and family.

We love you all to the moon and back!

I am so glad Jessie snapped some pictures of these awesome people cleaning.

Thanks again for organizing this, you are the BEST!

These guys are serious, they took every toy out of the playroom and disinfected it..WOW!

Going home!

We are THRILLED to be going home! (Well I guess I have to say Im a little scared...its scary taking your sick vulnerable little girl out of that sterile, safe environment.) Thanks to an amazing staff and amazing doctors at PCMC. We have already made amazing friends there.

Thank you!

Visitors

These are just a few of the awesome visitors Cam had in the hospital. Thanks to everyone who visited, called, emailed, texted, or facebooked us. We appreciate the comments and support. It really does help more than you know.

Cami even got to have a dalmation dog come visit her... in bed!! This dog was amazing. He get to visit the cancer kids once a week. Cami fell in love!