Clinic was your usual drill, a lot of waiting today :( I don't know what it is but being at clinic for 6 hours just drains me. Mama is one tired girl tonight. Presley kept telling me today..."I don't want chemo". We had an LP today. She was starving by the time that was over. Her request from when she woke up was a cheese quesadilla. She is so so cute when she comes out of anesthesia. She is not all there but wants her food. I always try to snap a picture while trying to support her! After the LP we went back to clinic to get chemo. The new chemo that she got today in her port was Ara-C and Cytoxan. Cytoxan can cause bladder irritation so when giving this chemo they make sure the kids are hydrated. We had 30 minutes of fluids then a 30 min infusion of Cytoxan. She will only get one does of that chemo. Presley also got Ara-C. This chemo she will get 8 does in an 11 day period. Today was the first dose.
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| "Wait mommy...we forgot EMLA cream!" |
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| ipad is such a life saver at clinic |
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| Waiting for her back poke. Always smiling. She really wants to happy when she had to get the LP |
Here she is eating her quesadilla!
Starving but still out of it from the anesthesia.
Presley will stay accessed (meaning the needle stays in her port) over night. This normally does not happen unless we are staying the night at the hospital. Usually she does not want them to take the sticker off (or de-acess her) but today she wanted it to come off. Having to stay accessed is not too fun. Her "tubies" are all attached. When she is accessed she hunches over and walks funny. We can choose to de-acess her everyday but we will try not to do that. The Ara-C chemo is given 4 days in a row.
Home health nurse will come in a drop off our goods and teach us how to push the chemo and flush her lines. Then we will give her the IV chemo, Thursday, Friday and Saturday and then de-acess her. By the time this is done I always joke with the docs that I will be getting an honorary degree in nursing from the U of U! Haha I only wish. But really we become nurses not by choice but by habit.
Presley will then have 3 days off and we will do that all again. This chemo gives her "flu like symptoms" and most kids get the body aches and just feel weak and sick.
Bathing, playing and walking just got a little more complicated. We will have to wear a aqua guard to make sure her dressing and port access is clean in the bath. And we will have to make sure Brother doesn't pull on the tube lines that are hanging out. He is very interested and even got his wrench out to figure out the tubes! Silly boy.
We stopped at the pharmacy for our Caution: Hazardous Drug: Special handling and disposing required. Sure...I will just give that to my three year old little girl. I feel sick to my stomach from that feeling. The rest of us have to wear gloves and masks to protect us but I'm asked to just give to Presley to swallow! Presley also started a chemo pill called 6-TG. She will take a night chemo pill for 14 days. So in 14 days she will take 23 does of chemo. Yikes!
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| Here we are getting chemo! I spy a Strider! |
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| Playing her favorite game at clinic! |
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| She has become a vending machine junkie...No I'm not proud of that. She picked pretzels... not too bad of a choice! |
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| Caution: Hazardous Drug, Special handling and disposal required. Sure...just give to my 3 year old! |
Her ANC is at 1400 but in a week will hit rock bottom! All this chemo is sure to send her back to the clinic to need blood and platelets. We will be keeping an eye on her for signs of needing those blood products.
Please keep Presley in your prayers. Her poor little body is really getting hit hard with chemo. Pray that she will handle it well and not get sick while her numbers are low.
Everyday I keep going...because of that little smile. It's not little. She is always smiling. Her smile makes me keep going. My little bald headed girl has taught me so much.
About a month we will see hair growth back and it will get to stay. She has almost lost all her eyelashes and eyebrows. The chemo "red devil" that she got a few weeks back made her hair come back in blond...that was weird. I love that bald head so much. It means so much to me. We had to sit down and talk to her after an experience at the Splash Park when a little boy laughed and said...That's a bald baby and ran and told his friends. She just stood there, not sure what to do. Daddy explained to her that the little boy didn't understand that the chemo made her hair fall out. Daddy looked her in the eyes and told her she was a fighter and a brave girl, and told her how much we love that bald head. We kiss it, we rub it, we love it! We will miss that little bald head. That was a hard, hard day to see the hair fall out and to see those cute curls fall down and hit the ground.
We are getting worn down. We are looking forward to maintenance. We know that it will not be a cake walk either but looking forward to life going back to a some what normal pace. When the doctors told me this was going to be the hardest 6-9 months of my life...they weren't lying. WORE OUT! We eat, sleep and breathe cancer right now. Looking forward to a day when this is all a memory.
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| Crew using his wrench to figure out what these tubes are doing hanging out of sisters shirt! |
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