Cami has been doing better than I thought she would in this phase. I know it has only been 4 days, but so far she is handling this harsh, yucky poison like a champ! Don't get me wrong its no cake walk for her, but Cami's attitude has stayed pretty positive regardless. She has been more nauseous than usual, her legs pains are more intense, she is really weak and tires easily, but she is being strong. The steroids are starting to kick in. She is eating a little more than usual and we are most definitely seeing mood swings.
These days we keep a barf bucket handy at ALL times.
In a span of ten minutes, Cami can go from playing to completely ZONKED out!
We had to go back to clinic today. Cami had to get an echocardiogram because the "red devil" chemo can cause heart damage and they want to stay on top of that. She was very brave and watched a movie the entire time. While we were walking to the cardiology unit Cami kept saying "mommy you are going the wrong way. I promise! OUR clinic is on #4 in the elevator." She knows her way around all too well.
She also had to get another chemo called Asparaginase or PEG shot today. This shot has to be given into the muscle, and the nurses say it is one of the most painful shots anyone will ever get. She got 2, one in each leg and she screamed so loud my ears were ringing after. She also said "I wish I didn't have cancer" to her nurse, which broke my heart. The nurse just said "we really wish you didn't have cancer too".
Side effects of the PEG shot: loss of appetite, local skin reaction at injection site, abnormal liver and pancreatic function tests, allergic reaction, high blood sugar, drowsiness or headache, increased thirst or urination, decreased clotting factors in the blood.
She wanted to send a picture to daddy (who had to work today) after getting her shot.
She was trying to wave to him, but you can tell how much pain she is in.
Clinic stats:
Height: 107.5
Weight: 17.3kg (38.1 lbs.)
ANC: 5100
WBC: 6.1
Hematocrit: 35.2%
Platelets: 263
Cami's ANC is really high because of the steroids she is taking.
The Doctors tell me it will drop drastically after she stops taking them on Wednesday.
I am so proud of Cami, and I have never actually met her! What a TOUGH girl to be getting that big shot! My eyes got a little teary eyed reading this post, and the post before it. I wish I could reach out and hug the both of you. If you are up at PCMC this week, I would love to meet the both of you. My daughter is having surgery this Wednesday and will be there atleast one night, perhaps in the PICU! Email me if you would like to meet for a little bite to eat, or just to say hi. camisaari@msn.com
ReplyDeleteOh, and I recognize your anestheseologist in the picture. All I remember is her name is Megan. We loved her when she worked on our daughter.
Thank you for posting so well and keeping us updated. I love your sweet daughter! She is one special lady!!!! We all learn from her! (and you mom!)
She's lost so much of the swelling she had early on. Yes, even without knowing your daughter that picture is heart breaking. It sounds painful just reading it! Hope she feels better and is back to normal soon.
ReplyDeletethat last picture breaks my heart. those shots sound horrible. hang in there!
ReplyDeleteYou have a beautiful family and an AMAZING little girl! I stumbled on your page through another blogger that I am friends with. My daughter who is 21 months has Cystic Fibrosis and struggles daily to maintain her health. I'll never know what you are going through, but I do know that you must be a very strong mom to go through this so well. Cami is beautiful and our family will continue to keep her in our thoughts.
ReplyDeleteoh, poor cami! your description of the peg and that picture of her after her shot made me tear up a little.
ReplyDeletei'm glad that, overall, this round is going a little better than expected. i feel like you're retelling our story when you said, "she's handling this phase better than i thought she would. i know it's only been 4 days, but..." that was EXACTLY what i said. and the whole phase has been better than expected for us - i hope and pray it goes that way for you guys, too!
FOUR different chemo's in one week!!! Two given intravenously, one given directly into her spine and one by shots in her legs! Hurts my heart but I am SOOOOO extremely proud of that beautiful, courageous, spunky Cami girl! I LOVE YOU CAMRYN!
ReplyDelete~ G'ma Di-Di
that bottom pic breaks my heart...trying so hard to be happy and yet in pain!! love that sweet little face...she is the most brave little girl ever!
ReplyDeleteSometimes I actually forget how horrible these drugs are until they need something like an echo. It is kind of like a reality check. I'm glad DI hasn't been as bad as you thought it would be. And for us the first half was worse than the second. So hopefully it will get better soon. Daph seemed back to her regular self before we were even done with DI.
ReplyDeleteCami is so gorgeous I can't get over it. Her eyes kill me. It is good to see her be so playful.
We have a "vomit kit" in our car too. Bucket, rags, wipes, 2 liter bottle of water.
Hang in there ladies!
Hang in there Cami, you are so brave & strong!!
ReplyDeletexoxoxo
Dave & Kristen
Poor (Strong) little thing! I hope today brings happiness for Cami and for you!
ReplyDeleteCami you are such an inspiration to all of us because in the midst of everything you are going through you have remained one tough little cookie. You are so strong and brave and we love you! : ) Just know that God is with you and your family always and He is holding you in His hands and that is the best place to be! In this world we are faced with many challenges and struggles but we are never alone...I hope that you can find comfort in The Lord and in the fact that He loves you and your family so much. May He be your strong tower and resting place in the storms of this life! : )
ReplyDeleteChels- I don't know how you do it. You. Are. My. Hero.
ReplyDelete(((hugs)))
Chelsea I think about you all the time! You inspire me to do and be better. You are such a great mother and your daughter's biggest supporter. Made me cry when you said "Cami wished she didn't have cancer." What a harrowing, refining thing you are going through. You are in my prayers.
ReplyDeleteSuch a little hero! We heard (and saw via the Internet) that Cami was the Princess of the world on Saturday!
ReplyDeleteSo GREAT!