Monday, December 13, 2010

Clinic 12/9/10 and chemo at home...eeeek!

Remember how I said I felt like my head was going to BLOW?!?  Well, now I have really lost my mind.  For clinic last Thursday, Cami was scheduled to get a Lumbar Puncture (or spinal tap).  When she gets this procedure done, they put her to sleep...thank heavens!  This means she cant have anything to eat or drink the morning before we go in.  Well, like I said I have lost my mind and when she woke up I offered her the usual chocolate milk.  Pat caught it, but not in time to stop her from getting some into her tummy.  When we got to clinic I had to tell the Doctor that I (yes me, the "responsible" mother) had given her milk to drink, then they told us they couldn't do the LP. Cami was THRILLED, but I felt like a moron.  I just feel so spacey lately and I honestly think my mind is just giving up.  Too much to think about and plan for, so its just not going to do anything at all.  This will just not work for me though...especially because for the next 2 weeks we will be giving Cami her chemo at home and THAT is something you CAN NOT mess up on!

Clinic went well.  Pretty much the same as always except Cami started the 2nd half of Delayed intensification (in other words the crazy chemo).  She got 3 new new chemo's:


Cyclophamide (Cytoxin): This one they give her through her port.  It infuses over 60 minutes.  Side effects are; nausea/vomiting, hair loss (haha..too late), low blood counts 1 to 2 weeks after treatment, blood in the urine, metal taste in mouth, hormonal changes (nice), heart damage with high doses (which Cami did not get).

Cytarabine (or ARA-C): This is the one we will give her at home 4 days in a row for 2 weeks.  It is a 3-5 minute push.  Side effects are; nausea/vomiting/loss of appetite, diarrhea, low blood counts 1 to 3 weeks after treatment, mouth sores, hair loss, abnormal liver function, irritation to the eyes, flu- like symptoms.

Thioguanine (oral chemo): Cami will take this pill every day for for 2 weeks.  Because it is chemo, we are supposed to wear gloves or wash twice after handling.  It is a strange feeling to put gloves on just to touch something you are letting your child swallow.  The side effects are; nausea, low blood counts, mouth sores, and abnormal liver function.


On the way up to clinic, we saw our cute cancer friend Millie and her mom Amanda.  Cami was really brave because she knew that Millie had just done the same thing.  

We LOVE when Daddy gets to come!

Here's the new chemo's

Here's the oral chemo she takes every day at home.

They have PCMC all decked out for Christmas.  
Cami LOVES this Horton tree.



Cami had to stay accessed which means she had to keep the needle and tubing in her port for 4 days so we could give her the ARA-C at home.  She HATED it, but we let her access her reindeer friend and she gave him his chemo too.


she even said ok, time for your Vincristine (another type of chemo Cami gets).
It was funny and sad that she knew the correct name.  
I think the entire family could go into the medical field after this.  


I got a not so fun delivery of everything we'd be needing to give her chemo at home...



Here's what is in a Chemotherapy spill kit, in case you were wondering.  

We had to put this in our fridge...
chemo in the fridge, makes ya feel all warm and cozy doesn't it?


To give chemo at home, it is quite the process.  I clean her tubing with alcohol, flush with saline (this pushes all the medicine through her tubes and into her body), pull back for blood, a zofran push (anti nausea push) over 3-5 minutes, flush with saline, ARA-C push over 3-5 minutes, saline flush, and then we finish with heparin (a blood thinner to prevent clots).  
No wonder I've lost my mind!!!
 
I have to wear a gown, and special (extra thick) gloves to protect myself from the poison I am injecting into my baby.  



This next picture makes me sad, I had to de-access her port (or pull the needle out).  
This hurts Cami every time and I HATE it!!!

What a brave girl this Cami of ours is!  




Clinic stats:
Height: 108
Weight: 17kg (37.4 lbs.)

ANC: 1100
WBC: 3.4
Hematocrit: 32.7%
Platelets: 291

20 comments:

  1. Oh wow you are so brave to do this to your own child! I know I wouldn't be able to do it myself... you are such a strong woman! We need more people in this world like yourself.... after this whole ordill you deserve something grand! Something just for YOU!

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  2. I just HATE when they bring all those supplies to my house. Seriously, where do you put all the stuff? Cami is just so adorable, and I hate that these cute kids are going through sooo sooo soooooooooooooooo much! She will make a wonderful nurse someday. I think that when you are all through you should get an honorary nursing degree.

    And the losing your mind thing is really bad. I have the same problem. It really is awful. I have started telling people that if we set something up that they have to call me a bit before to remind me. I write it all down, but it's like our minds just can't comprehend anything anymore. It must be some type of survival mode.

    You guys are really amazing! I keep thinking back to when you were next door to us in ICS and how much I wanted to come visit you and talk to you guys, but I just didn't really have the guts to knock on your door.

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  3. that is SO not nice to make the mom give the chemo!! I'm sure it's for a good reason but that just breaks my heart. And i would be totally freaked out using the needles and all that...

    you are a totally on the ball person, so the fact that you are getting frazzled really says something. we'll keep praying for you guys! hang in there!

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  4. Oh Chel, I am so sorry that you :as a mother" ever has to do that to her baby! That is awful! You are an amazing mom, and dont you think for one sec you arent! I bet half of us moms couldnt do what you do in a singal hour! I KNOW I COULDNT! I serously look up tp you so much! Cami is so brave! Love you guys!
    XOXOXOX
    Nat

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  5. No wonder you've lost your mind is right! Good grief. No one will ever know what you all have gone through. What a valiant family! We love you and continue to pray for you!

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  6. you are A.M.A.Z.I.N.G!!!!! seriously, my mind would be totally gone!

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  7. Stay Strong Cami, praying for you daily beautiful girl!

    also, praying for the rest of the family!

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  8. Ugh I hate the fact that you have to take this yucky hospital stuff into your home. Since you have seen it done so many times though I bet you are way better at doing it than the nurses now. You are awesome, stay strong. We are thinking about you guys always. Love ya!
    Crystal

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  9. Chelsea,
    I just found your blog through Courtnie Cotterells and wanted to check up on you and see how you are doing. My heart broke to see the hard things you guys have had to go through, but how amazing and strong you all are. Our love and prayers are with you. Hope you guys have a good Christmas!
    -Brook Gibbons Black
    (we live in WA now, so i guess that is why I am so out of it..)

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  10. Wow, thank you so much for all of the updates, many of which made me cry, a lot of sad tears, but happy tears too :) I am so happy that so many groups and people have shown up for you at your doorstep, fundraisers, etc. and have made you and Cami smile! (and Pat too). You all continue to amaze me; your courage, your honesty, your humility, everything that you go through, you do it with a humble heart. I wish for Cami and you, the best, pain-free Christmas that you have ever had. She is such a sweet heart. Her sad pictures make me wish I could reach out and hug her. I could never say enough, so I will stop trying :) You are in my prayers, and please give little Cami a hug from one Cami to another.

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  11. Just so you know that you are not the only one, I also gave Erin milk one morning when she was supposed to be NPO. I felt so stupid. We ended up just pushing back her bone marrow aspirate to later that day. I felt awful making Erin go without food and drink until 3pm that day! Ugh!

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  12. Just to make you not feel so bad, one of Brinley's LP's David was about to give her a peice of gum, right in front of the doctor!! I didn't even notice, the doctor had to tell us "NO, she can't have that!!" She probably walked out of there shaking her head. Not to mention all the times I forgot the emla cream. I mean really, how much can our heads hold at once????

    Seriously though, you are in such a hard place and I hope you know what a great mom you are, head spinning and all. How could you not be overwhelmed? You are in the hardest part!! You are doing an amazing job, just hold on even if it's with your fingernails...

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  13. Yeah, I have also been THIS close to giving Elena food/drink on NPO days. I do think we get to a point where our brains are just too full of stuff! :)

    Hang in there guys - it looks like you're taking great care of that little cutie!

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  14. I did the same thing once...I made her a piece of toast and she ate 3 or 4 bites before I remembered!! I was mortified to tell the docs... I agree with what someone else said, how much can one brain hold!
    It totally sucks giving your baby chemo, but on the bright side...only 2 more weeks of DI and then a much needed break! Hang in there...youre doing awesome!

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  15. FREAK....I LOVE HER SOOOOOOOOO MUCH! BRAVEST GIRL I KNOW!!!!!

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  16. I don't know how you do it Chels! You are amazing. I love you guys! Hang in there...

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  17. Ahhhh!! Chelsea your scaring me!! IM SO SCARED FOR THE SECOND HALF!! Oh no...your going to have to give me any tips you can, we start the second half on the 29th and Livi is on count recovery right now, but its been aweful. She is a zombie. I just read your post about Cami last week and that is exactly how Liv has been acting. Its so horrible! So do you just de-access or do you have to access then de-access?? I dont think I can access it! That scares the bajesus out of me!!!! I will be calling you if I have any questions for sure! and no worries, I have lost my mind too so we should seriously plan to go to dinner or something before we both have to be put away....hahaha

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  18. omg- you continue to blow me away! I come to your blog often and love to read your posts (yes, even your so-called "negative" posts) You are such an inspiration and might I say ONE HOT "DOCTOR!" I am so happy that so many people have been able to help you out- and I can only imagine how many people YOU have helped through your blog. I've said it before and I will say it everyday, I can't imagine going through what you are going through. I don't know why people, especially children, have to go through things like this but I am hopeful we will find out someday. I keep you and Cami in my heart & prayers every day. Please let us know if there is anything we can do for you! We hope you are all able to have a wonderful Christmas and a Happy New Year!

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  19. Hang in there Cam! We are keeping all of you in our prayers! We love you guys sooooo much!

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