Tuesday, January 7, 2014

Merry Christmas and a Happy 2014!

Well its been 70 days since Cami received her life saving transplant and things have not been easy for our little Cami.  The first few weeks at home were extremely difficult.  She was throwing up 5-10 times a day, not eating and needing heavy pain medication for body pain.  Being home is bitter-sweet.  In the hospital I didn't have to worry about the medication stuff as much.  I was there for Cami 100% to console her, hold her and help her with anything she needed.  At home, it is very stressful!  We are now responsible for Cami's care in every way.  We are in charge of her medication schedule, dosing, hooking her up to her IV, cleaning and changing her dressing, making sure the house is as sterile as possible, cooking 'bone marrow safe' foods, and EVERYTHING else that was done by the entire staff up at Primaries.  It is EXHAUSTING and overwhelming to say the least.  I developed severe anxiety in those first few weeks being home.  I would wake up panicked thinking I hadn't given Cami her meds, or that I gave her too much oxycodone.  I'd find myself constantly going in to check on Cami while she was sleeping.  We were all getting very little sleep because her pills needed to be given every 2-3 hours through the night.  I don't remember ever being that tired emotionally or physically in my life, but we still wouldn't trade it because she gets to be in her own bed with her brother down the hall to giggle with and it makes it all worth it.








Here's how Baylee feels about all of it.  The poor girl has been really worried about her Cami.

As hard as it was, here's the good news... We go back to the hospital once a week for checkups and the Doctors say that everything is looking great.  Cami hasn't needed a blood transfusion since we've been home which means her new marrow is now making it's own blood supply.  In the cancer world it is all a waiting game, but for now things look good.  On her 100 day post transplant, we will have a BIG checkup where they will take her bone marrow and test it to see how much of it is her donors and how much is hers.. we want it to be 100% donor on that day with no signs of cancer.  It will be a nerve wracking day.  

We have VERY long days at the hospital while they run tests or give Cami meds or order prescriptions.  It just takes FOREVER!  
Cami made this manger out of popsicle sticks during a hospital visit, yep thats how long we are there!
 

This is Ashtyn.  She had a bone marrow transplant about a year ago and she is doing SO great!  
We love running into friends who are doing so well and give us such hope!

Although Cami didn't feel great through December, we tried really hard to enjoy the season.  We were humbled on so many occasions during this season.  There were times I would get so sad that Cami wasn't out enjoying Christmas the way kids should.  Then sure enough, a sweet friend or family would bring dinner, leave little gifts, or text to tell me they were thinking of us.  I am so grateful for the many of you who have shown our family love and support.  
The true meaning of Christmas sure came through this year in a VERY big way!

We still have to be very careful with Cami.  Her immune system is still very fragile.  She is not allowed back in school for at least a year and we are supposed to keep her out of public places if possible.  A small cold could be very dangerous for Cami, so we try to be very diligent in where we take her and what we do.  Even her food has to be specially prepared to keep it as sanitary as possible and she cannot eat out at all.  Everything is prepared at home.  We did allow one Christmas outing and it was so very special, I can hardly write about it without bawling.  Creative Arts Acadamy dedicated their entire Holiday performance to Cami and her cancer journey.  Each dance was choreographed with Cami's battle in mind.  They had pictures projected and a narrater telling all that she had been through as the music and dancers expressed emotions in ways only dance can.  It was an amazing night and our family was truly shown so much love by our community.  What an amazing Christmas gift!  Cami was able to come sneak in for the last couple dances wearing her mask, it made her feel so special and I am so grateful she was able to be there, if only for a few minutes.  

Thanks to our amazing friends who dedicated so much time into helping make this event possible.

We decorated gingerbread houses 
(Mommy had to do most of Cami's, but she had fun for a little while).

We watched LOTS of Christmas movies under the lights.


Bubba stayed outside playing in the snow with the neighbors until dark one night.. he looked like a snowball when he finally came in!

Cami wanted us to build her a snowgirl, so thats what she got!

Animal Jam playdate in bed!

We spend lots of time snuggling in bed.  It is sometimes the only thing that makes Cami feel better.

This handsome lil dude had his preschool Christmas program 
(which Pat and I took turns watching so we could rush home to Cami).

Since Cami can't be out in public, Santa came to visit the kids here!  
Thank you Santa (thank you Flamm family)!

On Christmas morning, Caden came running in bright and early ready to go down to see what Santa had left him.  Cami asked if she could sleep just a little bit longer (that's when you know your kid feels pretty crappy). 



Usually, we are used to Holiday's filled with our big family and rushing from house to house so we can visit with everybody.  This year, we stayed home and it was lovely.  I tried my best to make our traditional brunch (it didn't even come close to Grandma's, but it did the trick).


We released lanterns to remember our sweet friend Millie.  Oh how we miss that girl!


 



Cami wasn't feeling too hot on New Years either, but she wanted to stay up and party!  She requested that we dress up, so we did!




Cami was feeling a little better New Years day, so we painted the Color Me Mine gifts from Millie's family.  Cami LOVED this!  I can't wait to take her there for 'art class' when she's allowed to be out!


Hooking her doll up to her nightly IV, just like mommy does to her.
Just look at that hair coming in.. so dark and thick-

ironically, she pushes her IV around in a doll stroller.

We have had so many ups and downs the past month. Every day is a hard road and it seems like just when we see a little progress something new begins.  Cami has had issues with kidneys, her legs hurt almost all the time and just yesterday we found out she has a bacterial infection in her gut called C-diff.  It is very painful and without going into too much detail- causes her to spend much of her time in the restroom.  This week we were scheduled to start lumbar punctures (this is where they put her out to remove spinal fluid and inject chemo into her spine because leukemia hides in the brain), but we had to put this off until this c-diff clears up.  

Every single day I look at this child with awe.  She has been sick or in pain since July and still she glows.  Her smile lights up the room.  I get stressed out, worried and negative, but Cami (like her daddy) is so positive and happy, that she just lifts us all up with her.  Even though she wakes up in tears every morning and feels pretty crappy most of the day, she still giggles and colors and tries her best to play.  Oh, I love my little hero, I am so honored and proud to be her mommy.  

Saturday, November 30, 2013

Thankful Hearts

Our hearts are so full, I am having a hard time finding the words to properly describe how amazing the last week has been...
A few days after Cami engrafted, the hard work began.  It was time to get her weaned off the pain pump, get her up and moving, and switch all IV medications to oral.  These may seem like easy tasks, but for bone marrow patients they can be extremely difficult.  Cami worked so hard!  She still felt so crappy, but each day she took her pills like a champ (sometimes she would throw them up immediately after taking them and then she'd say "Come on mom, lets get them down again") and slowly weaned off her pain pump.  She also went on some awesome walks around the unit to help strengthen her legs.. this was like running a marathon after laying in a hospital bed for so many weeks.  

Here is Cami's morning dose of pills.. not an easy task for a tummy that has been empty for weeks!

Cami prepping Froggy to go home.

Cute cousins visiting-


We were given a list of cleaning to prepare our home for Cami's arrival.  We had so many amazing friends and family come out to help.  These guys bleached every nook and cranny and scrubbed with toothbrushes!  We are so incredibly grateful for their help.. there is no way we could have tackled that list on our own.  Love all you guys!  We can never thank you enough for helping with this!





THEN.. my dear, sweet, thoughtful friends came in and put up all my Christmas decor so Cami could come home to a house full of Christmas magic.  Can you believe how awesome they are?  Thank you girls.  What a wonderful thing to come home to!


To top it all off- Pat's thoughtful sister, Lindsay, surprised us with a couples massage at the Montage resort in Park City!  My cute mom was nice enough to sit with Cami at the hospital (Cami was in on the surprise.. and so excited for us) while we spent the afternoon being pampered.  There is nothing in this world that could have been better after all the stress and tension we have felt the last few months (not to mention sleeping on a tiny, hard hospital sofa.. not the best on your back).  
We will never forget this amazing experience... Thank you Linds!


 Then the day before Thanksgiving, we were told that Cami was cleared to go home!
What perfect timing!  We have much to be thankful for.

I had to take a few pics of the room that we spent so much time in an literally witnessed life-changing miracles in.  

This was the little couch/bed Pat and I slept on.. I will NOT miss this little thing!

Kathy is such an amazing nurse.  She was a favorite for sure!  She helped us get out of there and answered my millions of questions before leaving.. thanks for being patient with me Kath!


Each day in November, Cami tried to write on a leaf for her Thankful tree (thanks for the idea Shawni).  We did not help her with these, I really wanted her to think about something to be thankful for each day, even through her hardest of times.  Her leaves made us laugh and cry at their sweetness.  

Here is what they say: Doctors, my button (pain pump button), my house, nurses, kisses from Mommy and Daddy, ANC 500, medical bills (what???), Froggie, movies, fresh air, Grandpa Bruce,  a sip of water, trees, my donor- he saved my life, Dad- mommy, Baylee and Millie (her pups), Rebecca (her American Girl Doll), Caden, and the sun.  
Oh, how I love this girl!


They have a special program at the hospital called the Beads of Courage.  Each time Cami does something difficult, she gets a bead.  Each bead has a special meaning.  For example: the cat bead for a cat scan, the glow in the dark beads for radiation, the bone for bone marrow transplant, etc.  Cami already has 2 full necklaces from her previous leukemia treatments, but this necklace she started fresh after her relapse.  It is amazing to look at all these beads, knowing they represent a procedure, surgery, poke or other treatment.  She has been through so very much.  

She loves her beads of courage necklace!


Once we got all our medications from the pharmacy, and packed up our room.. we were good to go home!  The hospital staff gave Cami quite the send off and she got to ring the bell for the second time!  Our phones were acting up and we didn't get a video.. I am so sad!  I was in tears, it was a very emotional send-off!

Since Cami is on the bone marrow team now, Dr. Verma is no longer in charge of Cami's care, but she will always be her Doctor in our eyes.  She has kept close watch over Cami through her transplant and has visited her often.  She came over to sing to Cami and send us off!  We are so grateful for such a great Oncologist who truly cares!
We love you Doctor Verma!

 The first thing Cami wanted to do when we got home, was read under the Christmas tree by the fire.  She sat there content and happy for about an hour.

Then her and her Caden had to do their own decorating!
 

While Pat and I learned to hook Cami up to her nightly IV... UGH!


 Then the next day, our awesome soldier friends the Air Force AMMO's brought us a Thanksgiving feast and gifts for the kids!  Oh, how we love these guys.. they have been so incredible to us!

Because Cami's immune system is very weak, our Thanksgiving was a little different than our usual large family gathering.  It was just the 4 of us and it was perfection.  My heart was bursting with happiness all day.  Grateful doesn't even begin to cover it.

This is how Cami feels about eating right now... haha!

Love this little family of mine.


Cami's Thanksgiving picture:


It is a lot of work to be home.  We are now Cami's nurses and just keeping the medication schedule straight is a task all in its own (we figured out Cami takes on average 34 pills a day, and has IV feedings on top of it!).  We are up every 2-3 hours through the night giving medications and hooking her up to her IV.  Cami still needs help with almost everything she does and gets nauseous quite often through the day.  It is crazy around here with Caden running around, trying to keep the house germ free and just managing everything is a huge task!  BUT it is all worth it to hear the kids giggling down the hall, to have Cami in her own bed, and to be out of that darn hospital room. 
We are together and it is everything!