Thursday, October 31, 2013

happy Halloween! Day 2

It was another rough morning for Cami.  The nausea is stating to come on suddenly and without warning, early this morning she threw up in her sleep.  It is awful for her.  Cami felt pretty terrible most of the morning.  It is so awful to see her hurting and so nauseous.  All I can do is rub her back and hold the barf bucket.  It is a completely helpless feeling as a mother.  Thankfully we had an amazing nurse (Trish) who got things under control and by the afternoon, Cami was feeling a little better.  We were able to finish her legos and as we were sitting down to play with them we could hear the trick-or-treaters outside our door (each nursing station was set up for the kids to trick-or-treat).  Cami just broke down.  She is not allowed outside her room and it sounded like such fun out there in the hallway.  It was heartbreaking for me to see her so sad, but luckily she snapped out of it and asked to put on some kitty ears (she was not feeling well enough to put on her real costume- the Wonder Woman ensemble).  Even though Cami hasn't eaten anything in over a week.. Her cute nurse went trick-or-treating for her and came back with all sorts of goodies.  It made her feel like a part of things, which really helped!  Then some of the nurses came to see her costume and show off theirs.  She was so happy to see her nurse friends and even turned around an waggled her little 'tail'.  Thankfully, the day ended on a good note.  Quite honestly... I am a little scared to go to bed tonight for fear I will wake up to her uncontrollable vomiting.  Ohhh.. boy!



These are the hospital heroes... our nurses are the BEST around!
They love their job, they love these kids and it shows.
We are so grateful for the ICS nurses!

This is Cami with some of her visitors.  She can't leave her room, but she sure got right up to that doorway.

On the left is Andrea she one of the nurse practitioners on the chemo team,
and on the right is our awesome nurse Trish (she's one of our fav's.. shhh don't tell anyone)!  

Happy Halloween!!!

Cami insisted that Froggy have an outfit.  
Once he was dressed up, she made him pose while she snapped about 100 pictures of our little friend.
Happy Halloween Froggy!


Another really hard part about to day (for me) was not being able to be with my Caden.  I wasn't able to go to his school parade, or make treats with him, or take him trick-or-treating.  I didn't even get to give him a squeeze today, but I know he had a blast with friends and his Daddy and cousins.
Halloween is his absolute favorite..
I love my little Jedi master!


Wednesday, October 30, 2013

Day 1

Today Cami woke up with the biggest grin on her face.  She was so happy for the first hour and then she started getting really sick.  Her tummy is hurting, she is nauseated and her body aches.  Unfortunately his is all pretty normal for transplant kids and they expect it to get worse before it gets better.  They are pumping her full of so many meds it is hard to keep track.  She will need to be given lots of support care for the next few weeks.  She will be given nutritional support, transfusions, antibiotics, pain meds, fluids, electrolytes and meds to help with nausea (and that is just the list of supportive care).. there is a lot more that goes into her little body each day!  Today Cami kept saying she just felt "icky", so we snuggled up in her bed all day watching movies in between her throw-up sessions.

It breaks my heart.. just just looks so sick!  I'd do anything to take it away.

Feeling a little better after some zofran!  
Just look at all those boxes on her pole!  
She has to carry her tubes around her shoulders because they are so heavy.

Lego's are her favorites right now.. these little sets are keeping her quite busy.

day +1... DONE!!!

Froggy's stuffing transplant

If you know Cami, you have probably met Froggy.  Froggy has been Cami's lovey since the day she was born.  Froggy has always been important to Cami, but he became especially important when she was diagnosed with leukemia for the first time.  He has been to every single Doctors appointment, every inpatient stay and he has always been there for Cami to give her comfort when she needs it most.  Well, Froggy has been through a lot and he looks rather rugged these days.  Cami's oncologist (Dr. Verma) came in a few weeks ago and informed us that Froggy was in need of a stuffing transplant and he would need it soon!  Even though Dr. Verma was kidding, Cami took this very seriously.  Luckily, Froggy has a brother, Sam (who we bought to try to trick her when she was little so we could swap them for washing.. that didn't work, she knew who the real Froggy was).  We tested Sam and he was a perfect stuffing match for Froggy and so it was decided that Froggy needed radiation, chemo, and finally his stuffing transplant along with Cami.


 Here is Froggy getting his radiation with Cami.  They went through every treatment together.


A few hours before Cami received her transplant, it was time for Sam to go into surgery.
Here's a before picture.  Froggy was so grateful.

Sam getting his assessment before surgery.  It is AMAZING how much Cami has learned through her years of medical procedures.  She is very thorough especially with Froggy and Sam!

...and he's OUT!

The stuffing was taken out of Sam's hip, just as Cami's donor's marrow was taken from his hip.

Sam gave Froggy a fabulous amount of stuffing.. what a gift!
We love our donors.. just wish we had a name to put with Cami's!

Sam in recovery.  Happy that he was able to help his brother.

Now the critical part...
Froggy's transplant!


Cami was very cautious and remained sterile the entire time!

Froggy is now recovering with Cami.  He is getting fluids and meds through his broviac, just like Cami.

This has been very therapeutic for Cami to "play out" what she is going through.  Plus.. Dr. Verma was right!  Froggy DID need that transplant, he was getting saggy-baggy!

Happy Bone Marrow Birthday! (day 0)

I am overwhelmed with emotion as I try to put into words how I feel about yesterday.  Yesterday, our beautiful girl was given the best gift she will ever receive, our family was given the best gift we will ever receive and there was only one person who could give it.  ONE person out of the ten million people who are registered was a complete 10/10 match to our Cami, and he is a complete stranger.  Yesterday was about Cami, it was about our family and a new life for all of us, but it was also about our hero donor.

His cells arrived around 2PM in a cooler.  When they pulled out the bag, both the nurse and the lab tech commented on what a large donation it was (they were able to get close to double the volume from Cami's donor than the average donor.. yep that's our super-hero donor man).  The cells look just like a bag of blood, but that bag was holding our everything inside.



This is our hospital family (the staff here at Primary Children's ICU), they came in with giant smiles on their faces, singing Happy bone marrow Birthday and showering her with gifts on her special day.  We love this team of people who have fallen in love with our Cami.  You can just see how happy they all are that this day is finally here!


Happy Bone Marrow Birthday sweet girl!


Nurse Nancy and Nurse Aubri tediously checking the cells before hooking them up to Cami... we love these guys so much!

This picture is so blurry, but I love it because you can see Nurse Nancy hanging that precious bag in the background.

The infusion ran for over 4 hours and because of all the pre-meds they had to give Cami, she fell asleep about 15 minutes into the process.  It was a rather quiet afternoon watching that precious gold drip into Cami's veins.  It is a miracle that those cells can be transfused into Cami's central line, then they will eventually find their way and begin producing as if they were Cami's own marrow...  AMAZING!

We are so thrilled that those amazing hero cells made it safely into Cami's body.  I had many nightmares about the plane crashing or the bag cracking open before they made it to her.  Well, thankfully everything went smoothly and they are finally in her little body.  It will be a very long time before Cami is in the clear and now her real battle begins.  Now we wait for engraftment (or for her body to accept the transplant).  The Doctors say on average it takes 21 days for a child to engraft, but it can happen as soon as day 14 or as late as day 40+  we all placed bets on the day we think she will engraft...what's your guess?

Monday, October 28, 2013

Our little soldier (the negative days)

I titled this post 'the negative days' because 7 days before Cami's bone marrow transplant we started the countdown to transplant.  They call these days the negative days (or preparative regimen).  They countdown until the day of the transplant and that day is called day ZERO, after that day we get to start counting UP!  Once Cami gets to day +100 her risks for infection and graft verses host disease will go down a bit.  Then at the one one year mark, we can really take a deep breath and she can return to school and normal life.  So as you can see, this will be a very long process for our little Cami and it is not an easy road, but she is strong!  I am so proud of how she has handled things so far!  

Once we got home from Disneyland, it was time for the bone marrow process to begin.  In order to destroy the maximum number of cancer cells, the combination of total body irradiation and chemotherapy are given at very high doses that would be fatal if Cami did not receive a transplant because all of her bone marrow will be destroyed.  After this point, the bone marrow transplant is crucial.  One Doctor described it to us as taking Cami to the brink of death and bringing her back again.  Obviously this part of the process was terrifying to us.

It all started with twice a day total body irradiation.  Each session lasted about 45 minutes.  I cried through the entire first radiation session and crying is not something I do in front of Cami, but this was one time I couldn't hold it in.  I had to watch as the Doctors hooked Cami up to what seemed like a torture device and then I was forced to leave.  Forced to lock my daughter in a room full of toxic poison.  I was a wreck and it didn't help that after the first session Cami was so weak and tired an extremely nauseous that later that night when it was time to go back she begged and begged us to let her stay home.  It was one of the hardest things I have done this entire time.  Forcing her to go back to get sick all over again.  Pat and I pleaded with her to stand still to get it done as quickly as possible
because each time she moved they had to stop the machine and go in to adjust her lung shields and it just added that much more time on to her sessions.  It was a VERY long and VERY difficult 4 days.  Cami was exhausted and nauseous afterward and to drive up there twice a day was just awful, but I am so proud of her.  Even though she didn't want to, each time she walked into that room knowing that she would come out feeling awful, but she still did it!  She held so still and stood there even when her body was weak and tired and I'm sure she wanted to just give up.  She said to me "mom, I'm standing still and strong like a soldier."  I am so proud of my strong little soldier.  She showed that cancer who's boss even when it wan't easy.  I love my little fighter and I am so glad that battle is over and done with!

Here they are getting her all set up (this process takes about 10 minutes)

Trying to peek over them to see her movie

Each session was 15 minutes on the front and 15 minutes on the back. 

Fighting with a smile!


This is how she looked on the way home each day

Thanks to Aunt Jessie for coming to one of the longest days and being a giant help!  This is Cami after one of her treatments.. just completely zonked out!

ALL DONE!

On our way home we spotted some gorgeous trees that were "raining leaves".  We realized Cami hadn't had a chance to play in the leaves since the seasons changed, so we pulled over to celebrate no more radiation and danced in the leaves.  It was perfect.


Cami loves her Grandma Di-Di

Later that night we had a surprise at the door.  Cami was thrilled when she opened the door and real life soldiers were standing at there to greet her.  Cami was made an honorary AMMO troop member by the 649 Munitions Squad for being a brave little soldier through her treatments.  She was grinning ear-to-ear the entire time and she has told each and every nurse, tech and visitor all about it since!
Thank you 649 MUNS!  You are all heroes in more ways than one.

The next day it was time to check in for the fight of her life, so she put on her new soldier cap and walked in like a brave little fighter...

This are the only pictures I got while she was getting chemo.. 
here we are passing the time playing with my lipstick.  
Oh, I love my girl!


Oh, and here they are taking her into our new, bigger bone marrow transplant room.
Here we go.. ready or not!



Saturday, October 26, 2013

Disneyland

When we saw the massive amounts of appointments Cami had to go to while she was out of the hospital, we started planning.  We wanted to cram in as much fun as we could because we know that Cami's immune system will be weak for a VERY long time after her transplant.  In fact, she won't be able to attend school for at least a full year after transplant.  It is going to be a very long winter for her.  SO... Pat being Pat made up a plan to talk the Doctors into letting us go to Disneyland!  I was shocked and thrilled when Dr. Verma gave us her blessing.  She actually thought it was a great idea, but she would not allow us to fly because of the circulated air, so we packed up the kids and off we went!

The kids were beyond excited to be there, the weather was perfect and we truly appreciated everything about being there together. 


Disneyland was decked out for Halloween (our family favorite)!

Wonder woman and Spidey even got to attend Mickey's not so spooky Halloween party!  
We knew that Cami was going to be in the hospital for Halloween so how perfect that she got to trick-or-treat at D-Land!?!



Here are the classic ride pictures (I know you want to see them)...




We enjoyed eating whatever we wanted while we still can (soon Cami will be on a restricted diet)
Hot dog for Cami:

giant pickle for Caden:


Of course Cars Land was a GIANT hit!

We met up with the big man... he was so sweet with the kids!



 
 

 

We met so many characters, but Cami's favorite was always Mickey.  He grabbed her after a parade for some special bonding time.. she LOVED every second!  
 

We met up with the Flamm's (Millie's family) and the party REALLY started!

 
 


It was the trip of a lifetime and we are so happy we went.  
Our little family needed that calm before the storm, especially this little lady.