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!

Thursday, November 21, 2013

Day 23- ENGRAFTMENT!!!

After 23 days of torture and pain, Cami has officially engrafted... HOORAY!!!  She has had an ANC of 500 for 2 days straight and today the Doctors declared yesterday engraftment day (they say you have to be at 500 for 2 days straight, but the real engraftment day is the first day you reach 500.. kinda strange)!  I cannot even describe the joy I feel today!  This is the day we have been waiting for!  This is the day our sweet Cami has been working so hard for and suffering so much to get to!  Her little body finally accepted that amazing donor's marrow as her own.  Today is our fresh start.  Today her body got the gift of a new immune system and one that will fight that yucky cancer FOREVER!  Cami still doesn't feel 100% (she has what they call engraftment syndrome) her tummy hurts, she's nauseous, and she gets the chills when she gets out of bed.  BUT.. her mouth sores are GONE and we are seeing her larger-than-life personality trickling back, so we will take it!  Now we will begin weaning Cami off her morphine pump, trying to get her to eat something, and take her medicine orally (instead of through her IV).  This is quite a process and it doesn't happen over night, but we could really go home anytime she is ready (and meets a few requirements)!  The Doc's think 5-10 days!  YIPPEE!!!

Day 22 was the day Caden, Aunt Linds, and Amanda picked.. they are the winners of the engraftment day bet (but Cami gets to keep the money, it's hospital tradition).

We are thrilled that Cami has engrafted, it is a BIG milestone reached!  BUT.. the next few months will be critical for Cami.  The next milestone is day +100 and we pray we can make it without any hiccups, then we can breathe a little easier once again.  Now that Cami's body has accepted the new marrow, there is still a chance she will develop Graft verses Host decease.  This is where the new marrow attacks Cami's body because it see's it as a foreign object.  Oddly enough,we are praying for a little bit of GVHD because when the marrow attacks Cami's body, it will also be attacking any remaining leukemia, but too much GVHD can be very dangerous.  Also, Cami will have a very low immune system for the next year (especially over the next 100 days), so we will be staying away from crowds (yes, that means school) for the next year.  We figured out that her day +100 will be February 6, 2014!  There is still so much to worry about, but today we are celebrating and taking a giant sigh of RELIEF!

Happy engraftment day little love-



Cami's darling friend Mia (yes.. she shaved her head to support Cami when she relapsed!) came to visit and brought her American Girl doll for a tea party and to celebrate the special day.  
We love you Mia!  

Silly girls!

Saturday, November 16, 2013

Day 18- little signs of improvement!

Yesterday was like Christmas morning... better than Christmas morning!  The nurse brought Cami's labs and I was floored!  She's got 0.1 neutrophils (this is the part of the white blood cell that fights infection and the part that her new marrow has to begin making on its own).  Her neutrophils along with all her white blood cells have been non-existent up until now (which is why we have to keep Cami so protected from germs).  This means that there is activity in her new marrow and Cami's body will soon have the ability to heal the horrendous sores and all the other pain she has been experiencing.  Her neutrophils need to be at 0.5 for two days straight to be considered engrafted, but this is an amazing start!  This is what we have been waiting for!  

Today Cami's neutrophil jumped up again to 0.2 and she is feeling so much better!  Her mouth sores have drastically improved and she is smiling, talking and playing.  Our little room is filled with her special spirit and light once again.  She is feeling a like she has the flu (which is normal when your marrow is regenerating), but it's nothing she can't handle after all she has been through.

Caden's cold has been clear for about a week now and I felt safe to bring him up to see her today.  They were both so happy and Pat and I were in heaven watching them play and chat together.  Caden was bragging all about how brave he was getting his flu shot and Cami could have easily dissmissed him, but she acted like it was the coolest thing ever and told him she was proud of him.  They love each other so much.  It is the first time our family has been together in 21 days and my heart was filled with joy.  We have so much to be grateful for today and we can't wait to see what those labs have to say in the morning!  Go Cami... GO!!!

Dancing for Cami

Hey everyone this is Pat. I know, I know, you're disappointed that I'm hijacking the blog but I'll be real quick.  :) 

We have been so blessed to have amazing people in our life that want to help us.  I was asked to post this flyer by my good friend Jon Ivins who is setting up a local fundraiser for Cami.

Although she most likely won't be able to attend it sounds like it's going to be a fun night. Cami really really loved to dance and I can't wait for the day that I get to watch her up on stage again. 

Learn more about the event here.  

Thank you!



Thursday, November 14, 2013

Day 16

It's been 5 day's since my last post and what a roller-coaster ride those days have been!  Cami went from really sick, to even sicker.  For a few days there, I wondered if we could make it through this! Cami started to get extreme bloody noses and because her body is not producing its own blood supply right now, she is always very low on platelets.  Bloody noses and very low platelets are NOT a good combination and once her nose started bleeding, it was almost impossible to get it to stop.  At one point, Cami was throwing up blood, it was oozing from her nose, and coming out of her eyes.  These bloody noses are INTENSE and so scary to watch!  Cami also spiked a fever which is horrifying when you don't have an immune system.   A fever can mean so many things like infection, virus, engraftment begining, or it could just be a reaction to one of the hundreds of meds she is taking.  Fevers are one thing the bone marrow team does not mess around with!  Cami was imediatly put on tylenol, 2 new broad spectrum antibiotics and 2 anti-fungals.   Soon after they started all the new antibiotics, Cami started complaining of intense pain and it slowly progressed until it was unbearable.  She spent the rest of the evening on the toilet and I will spare you the details, but we found out later she had a stomach bacteria called C-Diff.  This happens when the good bacteria in your gut is killed off from all the antibiotics and it is very painful.  It is odd, but to treat it they give yet another antibiotic.. just add it to her list!  Then the next day day, she came down with a little cough.  The cough could easily have been her body just trying to clear out her mouth and throat (which is lined with sores), but the combination of cough and fever made the Docs concerned.  So, Cami had to be given a chest X-ray to make sure she wasn't developing pneumonia.  Luckily, Cami's lungs looked pretty clear.  They could see some inflammation in them but once again, because of her condition this could be from many things: a virus, engraftment beginning, or the beginning of infection.. so we will wait and see how she does!

Because Cami's immune system is non-exsistant right now, they brought the X-ray machine to her!  

Another thing going on with Miss Cami, is her darn mouth sores.
They looks so painful!  She is hardly talking (and when she does she has a croaky little voice becasue everything is so swollen), and she wont eat or even swallow.  It hurts to smile or laugh so we haven't heard that little giggle in quite some time, oh how we miss her infectious laugh!
She wakes up with mouthfuls of blood and coughs blood up daily.


Her cheeks and lips are so swollen from those darn sores.  
She looks like she's been punched about 100 times!

As if we needed another thing to worry about, 
Cami's oxygen levels have also started to drop while she is sleeping,
 so she was put on oxygen.
Her cute Daddy agreed to wear one too.  

Cami's emotions have been very tender.  She is sad and she has every right to be.  I would be so depressed if I woke up every day feeling horrible for 15 days straight!  It is enough to make you crazy!
She has been missing her family lately (especially her brother and the pups) and she has become very attached to Pat and I.  She just cries and cries when he has to leave for work after spending the night with her.  This is wearing on all of us, but we have to just keep going for Cami.


This is a picture of Cami getting checked by her bone marrow Doc, Dr. Pulsipher.  They do rounds very early in the morning and Cami gets so sick of constantly being looked at, listened to, and talked about.  Even though she hates it, she has remained respectful and brave.. so proud of this girl!
Because of her extreme bloody noses, they have increased her platelet parameter to 30 (meaning if her platelets get below 30 (normal range is 150-400) they give her a transfusion.  The Docs have also increased Cami's pain med dose almost every day.  You can tell when she is in pain because she cries in her sleep, clenches her fists and her heart rate is really high.  It has also become very painful for Cami  to walk.  The Doctors say it is normal for her body to feel like it has been hit by a truck after transplant. Just walking to the bathroom is a HUGE ordeal for Cami.  She walks like an old lady and just cries the entire way.  It is the saddest thing.


I need to start getting more pictures with Cami and her nurses.  This photo was taken during one of our other hospital stays by the hospital photographer, but it is Cami with one of her favorite nurses Sarah.  I cannot tell you how amazing the nurses have been in this unit.  They are the ones who go through the grit and grime with us, they clean up blood, puke and do it with love for our Cami.  We are so beyond grateful for the amazing nurses and techs here.  They honestly love our Cami girl and do everything in their power to make her stay comfortable and fun.  Cami has also become quite the little boss of her medical needs.  She has learned the meds by name and she knows which ones work for her and when she likes them.  Each time the nurses have a shift change, she tells them exactly how she'd like her care handled for the day/night.  Little smarty pants.. 


Since I'm trying to end these posts with some good, here are a few things we are grateful for this week:



Two days ago she made a break-through and ate a few ice chips and sipped on some water.  
This is a really BIG deal and we hope that it means engraftment is coming soon.


She was also able to sit up for a few minutes and do a craft, 
she has not wanted to do much of anything the last 10 days so this made me one happy mama.  


Caden has had a little runny nose so we have been keeping him away from the hospital.  This has been so difficult on the kids.  They really do love and miss each other.  Often times, FaceTiming Caden is the only time I see Cami smile all day.  I mean, how can you not smile at that boy!  


Cami's Grandma's have been right there by our side.  Whether it's bringing me lunch so I don't have to leave Cami's side, doing laundry, cleaning our house or running my errands.. these two wonderful women have it handled for me.  They are incredible!


This little guy is LOVING his preschool and he has finally gotten used to going all day every day, and I am so GRATEFUL!  I can't imagine having to leave him somewhere where he was unhappy.  He is already speaking spanish, reading, spelling his name and other small words.  I am so proud of him, it makes my heart hurt.  Caden is so worried about his sister, he washes his hands about every 20 minutes when she's not even home with him.  He just wants to do everything in his power to make her better.  I wish you could hear their little FaceTime conversations, he loves his sister so dearly and she loves him.  
They have learned how much they really mean to one another.



Our Cami girl has also been a bit of a star lately!  Pat's uncle and aunt (the famous Rick and Linda Eyre) are amazing writers.  Linda wrote the sweetest blog post for Cami, and Rick wrote an article in the Desseret newspaper.  They are such fabulous writers, and their articles perfectly express our feelings on this journey we have been forced to take.


Cami was also THRILLED that one of her favorite people, Shauna Lake put together a beautiful follow-up story for Cami that aired last night.  It was Pat's night and when I called them after the story, he said Cami's spirits were so high after watching.. he hadn't seen her that happy in a long time!  
Take a minute to watch the story here:

(this photo was taken the day before Cami's transplant when Shauna came to do film the interview)

So for now we just continue to wait and pray and hope that there are no serious complications before she engrafts.  The last 2 weeks have been incredibly daunting.  It just tears my heart out to watch Cami in such pain and not being able to do anything but love her. Watching her go through all of this has hands down been the hardest thing I have ever done and I don't know if I will ever get rid of the anxiety I now carry with me.  I lay awake at night watching monitors and working myself up that something bad might happen at any minute.   I just worry constantly, but hopefully relief is around the corner... cross your fingers that those little white blood cells will start coming in soon!