Saturday, August 31, 2013

A Birthday Escape!

Cami's levels came up very quickly this round. Much faster than the Docs expected! So after 22 days in the hospital, she finally escaped! We were thrilled because that meant she got to come home for her birthday! It was a birthday miracle! 

Getting her last chemo for this round. That little syringe looks so harmless, but the way the nurses suit up to protect themselves, you can see just how toxic it really is!

Goodbye room 4422!

We got home to the BEST surprise! My ( business partners and dear sweet friends organized, sanitized, and redecorated Cami's room for her birthday! It is SO beautiful! Cami loves it and just wants to spend her time reading and coloring in there. It really is a room fit for the princess that she is! 

They even put Millie's prints in there.. SO special for Cami! 

These amazing girls worked non-stop and made this transformation happen in less than 2 days! I am so lucky to have such wonderful friends! Love you guys! Thank you for putting your sweat and tears into this for my baby girl. It truly means the world. 

For her birthday celebration, we got the "OK" from her oncologists to take her to Build-A-Bear (only during a slow time while wearing a mask.) We were so thankful that they let us go. we needed the time together as a family being semi-normal. The kids were so happy to be together.

Then we stopped to get our last snow cone for the summer! 

Cami had another amazing surprise of the day! Her adorable, sweet friend Mia decided to shave her head for Cami! How can a child this young be so selfless and kind? This meant the world to Cami, and all of us! She has been talking about it all day! We love you Mia! 

Her doctors said it would be ok to have a few healthy friends over for a party! Jaclyn (owner of the amazing Sophisticakes) heard about our Cami having a birthday and delivered this AMAZING cake! Cami was THRILLED!! This cake was not only gorgeous, it was so yummy (even the fondant was marshmallow so it was delish!) 

Cami was delighted with all this yummy goodness!! 

Thanks to all her little friends for coming over freshly showered at the last minute, for washing their hands a hundred times, and for making our Cami girl happy!

We are so grateful for our little fighter. She has taught us so much in the last 8 years. Our sunshine girl is one year older and we couldn't be happier! Love you sweet girl! Happy Birthday! 

Friday, August 30, 2013

The plan

I keep putting off writing because honestly it just makes this entire nightmare more real.  Even after 21 days, I am still in shock and sometimes I look around wondering what the heck we are doing here.  Even though we hate that we have to be here, the 4th floor of Primary Children's has become our home.  I am grateful to spend time in the cancer unit.  I say that because the feeling in that unit is indescribable.  You can just feel the powerful energy radiating from each of those kids rooms and the spirit just pours over you the minute those double sealed doors open!  I would have to say that we are really learning to love it here.  Cami has made this little room her own and it is quite cozy.  Pat and I take turns sleeping with her each night because sleeping here is not very restful.  I am trying to learn to love the nights at the hospital,  even though they are extremely exhausting and that's when my anxiety seems to get the best of me.  BUT... the nights in the hospital are full of snuggles, movie time, nail polish, hair dye and glitter tattoo's!  Wouldn't miss them for the world! (thanks Amanda)

Cami was thrilled to learn about her CamiStrong bracelets!  
Giant thank you to Kaitlyn for thinking to order these for us!

Cami is hooked up to her IV almost constantly

She has daily physical therapy to keep her little muscles as strong as possible through this process.

So what's the plan?  Things were a little up in the air at first and we STILL wont know EVERYTHING until we get Cami back into remission, but we have a MUCH better understanding of what this battle entails for our Cami.  First, she will have to go through 3 rounds of intense, inpatient chemotherapy (we are just finishing up the first round now), we will get to go home in between each round for about a week or two while Cami's bone marrow and blood cells recover.  Once we make it through those 3 rounds, we will go in for the bone marrow prep (which includes more chemo and radiation) to clear out and prepare the bone marrow cavity.  They told us that they will basically take Cami to the brink of death with the chemo/radiation (to the point where they know her marrow will never recover on it's own), then they will rescue her with the new marrow.  We were really hoping that Caden (little brother) would be a match, but he is not.  Cami's bone marrow team has looked into the registry and found some really great options that are potential donors for Cami.  They need to dig more into each donor, but they feel confident with what the registry has to offer.

Cami has been given a handful of chemotherapy, most of which she has seen before.  The chemo is the same, except it is double or triple the doses she got the first time around.  The one new chemo and most toxic is Mitoxantrone.  The nurses call this the blue devil as it is potent and nasty.  This is the bad boy that dropped her counts for so long, hence our long stay in the hospital to keep her safe.  Here are the listed side effects of this nasty little chemo: Low blood counts 1-3 weeks after treatment, mouth sores, nausea, vomiting, loss of appetite, abnormal liver function, urine turns blue/green, the sclera (white part of eye) may temporarily turn blue/green, hair loss, skin rash, fatigue, increased heart rate, heart muscle damage, and headaches.  YIKES!  No wonder they call it the blue devil!

Cami got the blue devil on day one

Her little body just gets worn out

Around day 11, Cami's counts had dropped and she needed a red blood transfusion.  
Thank you to all those selfless people who give blood.  
It save's our Cami's life after the chemo kills all her cells. 

Obviously another side-effect of chemo is hair loss.  Since Cami has done all of this before, she knows what is coming.  She told us she would love to color her hair sunset colors before it falls out.  
Huge thanks to my long-time friend Emily (owner of Salon Revive) for researching non-toxic hair colors and getting this done in such a hurry!  

She was so happy with the end result!

Cami has kept busy and happy thanks to some great family and friends,
lots of visitors and so much support.
Thank you from the bottom of our hearts.
Truly, each and every one of you are pulling us through this!

Caden loves and misses his sister, when he visits he is so worried about her and he tries to be very gentile.  They are the sweetest together.  We just love that little guy of ours...

One day, Cami got the of attention another cancer friend across the courtyard.  They waved from their windows, got out their white boards and wrote back and forth for a good hour.  Gwen made Cami so happy that day!  They asked each other questions like:
"how long have you been in?"
"what's your favorite hospital food?"
"want to be friends?"
 It was seriously adorable! 

Cami got a bald moxi doll and she LOVES it!  She named her Katie and she takes her everywhere!

Oh, and of course Froggy goes just about everywhere too.

While her counts were still high enough, we were allowed to go for walks and play in the little oncology playroom.  

a plain sheet of paper and colored pencils are her favorite right now!

 A few days ago, Cami's hair just gave out.
It was coming out like crazy and she decided it was time to shave it.

Of course, Froggy watched with a thumbs up for his Cami!

There's our sweet bald girl.. oddly enough, I have missed that little bald head.

Of course Daddy got a buzz cut too.

Here she is getting her very last chemo ( in this round)!  YAY!!!

Cami has had a great attitude for the most part.  Yes, there are days where she sits at the window, looking out at the world and cries just wishing she could be out there.  There are days she wonders why this had to happen to her, but for the most part she wears that big beautiful smile.  She handles this with such spunk.  She is my hero.

Sunday, August 11, 2013

Here we go.. AGAIN!

There is so much to write about, I hope I can find the words.  Our world has been turned upside down... AGAIN!  The last 5 days have been the longest and hardest days of our lives, but we know things are about to get a lot worse before they get better.  For those of you who don't know, our sweet Cami has relapsed.  Gosh, it's hard to write that awful word.  Things off-treatment were going smoothly, she made it through all of her 1st grade year event free and was doing so well, but just when we started to get comfortable in normal life again... BAM we were hit with a ton of bricks!

For about 2 weeks Cami had been complaining of pains mainly in her hips.  They were waking her up at night and keeping her from wanting to play.  Wednesday, July 31st, the pain in her hips became unbearable and she had a low-grade fever to top it off, so Thursday morning at 3am we took her to the E.R.  After a long wait, an x-ray and lots of blood work the ER docs let us know that her X-ray looked great but her labs came back a little concerning.

waiting in the ER

They sent us up to see the oncologists as soon as clinic was open.  When we got up there, the Doctors assured us that her blood looked like she had an infection or a virus and that we shouldn't worry about relapse.  We relaxed a little, but we still needed to get down to the bottom of her extreme hip pain, so they sent the infectious disease Doc's in to check her out.  They ordered a TON of blood to be drawn and tested for every virus and illness under the sun.  They also ordered an MRI of her hip to check for a bone infection.  We had a long, full day at the hospital and didn't leave until around 7PM that night.

She was a champ in the MRI and held perfectly still!

The next day Dr. Verma (Cami's main oncologist) called me to give me results.  She said the infection/virus labs were negative and that her MRI showed signs of bone damage (AVN from her steroids), and that her bone marrow was regenerating and that was concerning.  She wanted do a bone marrow aspirate so we could know for sure what was going on, but they couldn't fit us in until WEDNESDAY!  The next 5 days were probably the longest 5 days of our lives!  We googled EVERY explanation and prayed that there would be a simple answer.  When Wednesday finally came around, Cami was starting to feel a little better and her fever had gone down, so we were hopeful.

Waiting to go back to the "sleepy Doctors"

Bone Marrow Aspirate time

After Cami's bone marrow aspirate, Dr. Verma came in to deliver the results.  That Cami's cancer is back and she will need a bone marrow transplant.  My world instantly started spinning and I felt sick, I don't remember anything else she said after that.  Last time they told us her diagnosis we had the luxury of ignorance.  This time we know.  We know way too much and it is terrifying.  

They let us go home for the night to be together as a family before we checked in for the long stay.  Cami requested Boondocks, so we gathered the troops and took Cami out for a night of fun.  I am so grateful we had that night to be together and try to wrap our brains around it all.

Boondocks with her awesome cousins

It all started early Thursday morning, Cami went in for surgery to have her central line (broviac) placed then we were admitted to the cancer unit.  That day was overwhelming and exhausting.  Cami went through surgery, a back poke with chemo, an EKG, an EEG, another MRI, she started the dreaded steroids and 3 different chemotherapy's.. all in the first day!  We were blown away by Cami's attitude through the entire thing!  She was so brave and strong and just all around amazing, oh I love her so!

Cami preformed surgery on her dog 'Spot' to place a broviac just like the one she got.  
I took a picture so you can see what is now in her chest.

Cami has a long road ahead of her.  She will be hospitalized for about 5 weeks for this first round of chemo, and possibly another round after that.  Then she will need radiation and a bone marrow transplant which means ALOT of time in the hospital.  It makes the treatments she had the first time around seem like a cake walk!  This is going to be a long, hard battle, but we know that our Cami can do this!  I wish with everything in me that we didn't have to fight for Cami's life once again.  I hate cancer and what it has taken from our family, but we are trying to see the good in this.  We are trying to remember that Cami has touched so many people and will continue to inspire and uplift.  Even though the chemo is already starting to take over and is starting to make her feel really sick, she still has that bright, beautiful smile.

All smiles while she is getting her chemo-

The chemo is starting to take it's toll and little Cam gets quite sleepy-

Until her counts bottom out, 
we are allowed to take walks late at night while the hospital is empty.
We got lucky the other night and the helicopter took off as we were out watching the sunset.  
It made Cami so happy!

We are still completely overwhelmed and in shock by all of this.  We are still trying to soak it all in.  The one thing getting us through it all is the amazing amount of love we have coming our way.  We have felt your prayers and they are carrying us through.  Thank you to everyone who has brought meals, gifts, left words of encouragement and prayed their hearts out for us!  We would be lost without you.  Love you all!