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!  

15 comments:

  1. Hi Cami and the rest of the family!

    I just started reading your blog and I think you are a very brave little girl to be going through some tough and painful stuff. I'm 20years old from Canada and have watched my mom go through many cancer treatments at Princess Margaret Hospital so I know a bit of what your family is feeling as they help you out. My neighbour's son was diagnosed a year ago and he is only 19months old so I had a quick question for your mom. When you are at the hospital the attention is for Cami, but aside from people visiting, what else do you find that you are in need of? I was thinking of bringing some fresh fruits since all my neighbour has been eating is snaky foods like goldfish and cheerios. Would you think that would be appreciated?

    Cami I wish you the best and I know you are strong enough to handle anything life throws at you!

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  2. I don't know Cami, but it breaks my heart to see her like this! I have followed her story and Millie's for years. I am so sorry that she is in so much pain and hope and pray things look up soon. My younger sister had AML and MDS at age 9 and had a successful bone marrow transplant. She is now 10 years out! I feel for Cami for that reason, I still remember the long days in the hospital, and dealing with disease of my own, I can identify with some of her symptoms. Especially mouth sores - they are the absolute worst and hers look awful. After many doctor's appointments, it was my dentist that came up with the best solution. I wonder if Cami has tried the prescription magic mouth wash that contains lidocaine? It does provide temporary relief. I also take a liquid medication called sucralfate that helps soothe and coat the ulcers throughout my digestive tract. It might be contraindicated for her, and she probably can't swallow right now anyways, but I just thought those two wouldn't hurt to ask about! Much love to her and your family.

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  3. Praying for your sweet daughter.

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  4. Oh Sweet Girl! :) Any day now! Any day now! I just KNOW IT!!!

    Amy Ohlson

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  5. I wish you all the best, and I hope Cami will start feeling better very soon. If she'd like to receive a postcard from Paris, send me your mailing adress and I'll make sure I pick a really nice card for her :-)

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  6. Really hope that Cami feels better soon. If you think she might like a letter or card from the UK, email me on alicedotjohnston24@btinternetdotcom and I'll send something.

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  7. Praying for all of you. Cami is a superstar! Much love from Ohio...

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  8. Praying for engrafting to happen soon. We love Sarah! She was a Tech when we were in the hospital. she was working on her nursing degree. Shannon helped her with some wedding plans. Tell her Shannon Johnson and her mom says hi. We learned a little trick for the horrible bloody noses. One of the nurses tried it with Shan when her nose would not stop bleeding for hours. Soak cotton balls in nose spray like Afrin, they ordered some from the pharmacy. Then you put them in your nose. It was like magic! Her nose stopped bleeding every time. Oh thinking of you and these very hard times and wishing you could just fast forward through it all. My Shan is now almost 14 and was 11 when she had her transplant. She tells me she would not change a thing because she is much stronger, humble, more faithful and she has much more empathy! She feels it has made her a better person and I agree. We are so blessed to have these beautiful strong amazing souls sent to us to care for. I am thinking of you, crying with you and hoping and praying with you.

    Vickie Johnson

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  9. Oh my goodness, your poor baby. I was so incredibly sad reading your post. My son, Peter, did not go to transplant, but had horrible mucositis and nearly died from it a couple of years ago. We spent a month with Pete stuck in a darkened room and on iv morphine and ketamine which didn't seem to do anything. The worst part was that I couldn't even comfort him. If I tried to get near him he would just point for me to go away. I've blocked most of that time out as it was just so hard. And I hate to think of anyone else going through it.
    Huge hugs to you all. I can't believe what our poor children go through.
    Bridget Pirie

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  10. What a difficult update this must be to post and publish.
    Sending prayers of healing for the whole family.
    From "Cool Kid" Allison (an ALL survivor, 3 mo post treatment) and her family in Baltimore, MD

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  11. So hard to read as we all have become attached to your sweet family. My son was in the hospital for 5 months when he was born and I have only a small understanding of this but feel so much pain for what your all going through. I am praying my heart out that relief will come soon.

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  12. I just want to reach through my computer and hug you all! Im so glad that you love the nurses and that you have such wonderful grandmas to help you through these tough times. Praying for your daughter and for your aching Mamas heart. XOXO

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