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.
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!