Saturday, November 9, 2013

Day 11.. in the trenches

Things have not been easy for our little miss Cami the last few days, but she has been such a trooper!  As her mother, it just kills me to see her in such pain and so sick.  I can't imagine knowing that you are going to feel absolutely terrible for up to 4 weeks straight!  It is a living nightmare!  BUT.. each day that we cross off the calendar, we are getting a little bit closer to some relief for her.  The days are long and go by very slowly.  Cami doesn't feel up to playing or doing crafts like she has in the past.  We basically watch movies and pause them so she can throw up, or suction her saliva, or clean up her bloody nose, or get one of her medications hooked up, etc.

Speaking of medications, the sheer amount of medication given after a bone marrow transplant is UNBELIEVABLE!  Everything is given through Cami's central line with the exception of her mouth care and a few other medications that cannot be given through IV.  This means she has 6-8 IV boxes on her IV pole at once and an average of 6 tubes coming out of her constantly.  All the meds are carefully timed and scheduled as some are not compatible with others and each med is given at a different time of day.  When a med is finished, an alarm sounds and we let the nurse know that it needs to be switched out.  As you can imagine, with this many meds, Cami's alarms are almost constantly going off.. day and NIGHT! We are so sick of those darn alarms.. we could scream!  

As you can see, Cami is constantly hooked up to tubes and wires.
They get tangled and bug her ALL THE TIME!  


Just look at all those boxes on her IV pole!  
This thing is fully-loaded and they are constantly running different meds.. day and night!

Here is a list of all the meds Cami is on as of today.  
They cange almost daily, but here's today's list just to give you an idea:

Levaqin -IV (broad spectrum antibiotic as a precaution)
Diflucan -IV (antifungal as a precaution)
Actigall -oral (to protect the liver)
Cyclosporine -IV (anti-rejection med)
ZoviRAX -IV (anti-viral)
Nubain -IV (for itching)
Dilaudid -PCA (pain medication)
Apresoline -IV (hypertension)
Ativan -IV (used for nausea)
Benadryl -IV (used for nausea)
Zofran -IV (nausea)
Protonix -IV (for heartburn and acid in the tummy)
Electrolytes -IV
Tylenol- IV (for fever)
TPN- IV (feeding)
Lipids- IV (feeding)
Heparin -IV (to keep line from clotting)
Saline -IV (to flush line)
Imodium - oral (to control bowels)
Calmoseptine (cream for rash)
Melatonin- oral capsule (to help sleep)
Biotene (mouth care)
Nystatin (mouth care)



Even those little toes are constantly wrapped up in wires.


Look at those lips!  If you could see the inside, it is even worse!  
Poor girl is just covered in sores.

 I hate that my posts are so negative lately, but I promised to keep this blog real, and this is our reality right now.  We are in the trenches and Cami is battling her way through it like the little warrior she is!  Here are a few things that have made her extra happy the last couple days:

She received an autographed photo from the cast of Jessie (her FAVORITE Disney show).
This is her latest prized possession-

And she got this very special letter from a fellow cancer fighter.  Jake also had ALL, relapsed then went on to receive a bone marrow transplant.  He is doing extraordinarily well and just celebrated his one year bone marrow birthday!  We love you Jake!  
Thanks for the darling letter and for cheering Cami up!

20 comments:

  1. Please don't ever apologize for negative posts. Sadly, this is your reality right now and we are all here to support you and send prayers. What an awesome letter from Jake, wise beyond his years! Hang in there Carver family. Lisa. Salt Lake.

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  2. Yes, I agree with the other commenter. You are simply documenting, and its just not very pretty right now...and I thank you SO much for doing this. It is truly eye opening. You are such an amazing Mom! My heart aches as I read your words...as I try to put myself in your shoes. I hope you are both home soon and you can put this all behind you forever. XOXO

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  3. Thank you for sharing your reality with us - it just gives us a greater idea of what we can be praying for. There is a light at the end of this dark tunnel. I am praying that the engraftment happens sooner than later and that Cami can get the relief that she deserves.

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  4. Praying that Cami soon finds peace.
    Best wishes from Finland!

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  5. Oh man this is so heartbreaking for her to go through and for you to have to watch! Thank you for updating how she is doing and what is going on, she is on our minds and in our hearts constantly! If there is anything that would help her out or anything she likes please let us know-we would love to help her and your family in any way possible! My email is rabowlerfam@gmail.com. She is both of my little girls' hero and they ask about her and talk about her to their friends all the time. We will keep praying her engraftment happens sooner than later and that she can start the healing process. One of my former piano students went through this same process (relapse and transplant) 10 years ago at PMC and although it was soo difficult for him and his family then as an 8-9 year old, he has been and is doing fabulously!!!

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  6. Praying for you guys! Your strength is staggering and inspiring. Hoping this passes quickly!

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  7. Praying for Princess Cami and family. Keep up your fighting warrior spirit Cami your an amazing girl.

    God bless you all

    Erika

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  8. That sweet baby girl. I am so so sorry she is struggling and so sick right now. We are praying and hoping that she engrafts sooner than later so those counts can start going up and she can begin to heal. I wish I could come and give you both a big squeeze. Hang in there. We are thinking about you every single day. Love you guys. Love the Jamieson's.

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  9. I am completely speechless! what a sobering experience it is to read this, my heart and eyes simultaneously overflowed. I cannot even imagine what you as parents and your angelic daughter are experiencing. It seems so incredibly unfair and puts well into perspective how much I, personally, take for granted. I hope somehow, someway you feel the multiple thoughts, wishes. prayers, tears and hope that are felt and given for your sakes. Words cannot adequately convey the admiration I hold for each of you and the enduring love and strength you show each and every minute of every day... each of you fight a seemingly endless battle that most of us would give up and lose. But you choose to embrace this nightmare with grace, dignity and unparalleled strength of character. I am simply amazed and deeply humbled. Bless you all...

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  10. Hang in guys. I know she feels terrible but to tell you the truth, I think she looks great!! Her color looks good, no dark circles under her eyes. I'm feeling good things happening here. I know you're heard it all before and it's not just words...I am so inspired by your Cami. She is truly so much stronger than I am. What a terrific kid. Can't wait for her to feel better...any time now!! Thoughts and prayers to you all from here on Cape Cod.

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  11. Dave and I just got caught up on your happenings. We laughed with tears as Froggy got his transplant and are so sad that she has been feeling so badly. You amaze us and your strength is such an example to us. Thank you for sharing this with everyone. We are continually praying for you and your sweet Cami Angel. We pray she will engraft quickly.

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  12. I stumbled across your blog a couple of weeks ago. I'm from Germany. There's a specific leukemia study in my hometown in Baveria and people come from different countries for that new treatment. At the moment, it's the second time that my mom helps a family -- she speaks their language. This time it's a very young child and of course, you're getting very attached. So now, I'm praying for both your Cami and this child. I'm leaving you a link: http://www.theaustralian.com.au/news/health-science/recovery-could-rewrite-leukemia-treatment-rules/story-e6frg8y6-1226016138992 I don't know much about it -- if it could ever be relevant for you or someone you know. But in life, sometimes information at the right time is key... Ruth

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  13. That letter left me with a lump in my throat. Most of us will never know what this experience is like and I'm sure these kids become "old souls" at a young age because of it.

    Thank you for sharing your journey with us, it's inspiring and certainly makes one stop taking anything for granted. You are an amazing family! Many thoughts and prayers for you all.

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  14. Sending love and hope for "feel better" days for you all soon!

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  15. Praying for your family! It will get easier. Be prepared for all those meds she is getting through her line, she will have to take them orally before she can go home. This was such a hard thing for my Shannon. We went home on 26 different pills. We were however so thankful to get out of the hospital that it did not seem quite as daunting! You may be half way to grafting! Yay! Your future is bright :)

    Vickie Johnson

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  16. Transplant is so hard. Lucca like Cami had so many meds and tubes it was insane. And keeping them untangled was a joke. The alarms were awful and you wonder how you are even able to live on such little sleep. I hope that Cami and you will get some relief soon. I hope your days fly by and you can look back and see how amazing you all are to have made it through. I will say some extra prayers for you and your sweet family.

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  17. I don't even really know what to say - but I do want you to know I've been sitting here, reading Cami's story for the past hour, and my heart is full to overflowing for your family, and your sweet girl. Thank you for sharing her story, and your story -- in all it's real-ness, and all of the hard things. In some ways, I think that keeping it real is probably one of the most therapeutic things you can be doing right now. Because of Cami and the original story on the news, I joined the Bone Marrow Registry. Thank you, Cami , for bringing so much good into the world with awareness. This sounds like it's been a really, really hard couple of weeks!! I'm so, so, so sorry that it's been so horrible! <3

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