Holy cow, if we'd known what kind of day it was going to be, I think we all would have just stayed in bed this morning and never come out.
We won't know the results of the bone marrow aspirate and spinal tap until next week to let us know if she's been successfully put into remission.
Peyton had the worst treatment she's had to date, and hopefully the worst she'll ever have to suffer because I can't imagine a worse day. The doctor prescribed her an anti-anxiety medication to help soothe her through her treatment days, especially while she's on the steroids and a little nutty as it is. We couldn't find a pharmacy that had the medication, could get it for us in time, AND took our insurance….what a mess! So, we had to go to the clinic pharmacy in Tampa to get it filled.
But we found that was the easy part. Poor Peyton's surgery was scheduled for 2 PM, which means she couldn't eat after midnight! I woke her up in the night to stuff her like a turkey! But by 8AM she was starving and wanted spagetti…..it started. She began to wail and scream and it didn't stop until 1:30 when they took her off to surgery. She screamed for food, for us to leave her alone, "NO NO NO" was her favorite line, for more food, for us to go home, for more food! If we just could have fed her it would have been fine, but we had to literally torture her. I told my mother that if I'd had to stab her repeatedly, she couldn't have screamed louder, harder or longer than she did today. She actually burst a blood vessel in her eye.
Yeah, that anti-anxiety medication wasn't a whole lot of help.
So, after 5 hours of screaming 2 year old, we wait while she has her procedure, guiltily scarfing down sandwiches because we know she's hungry to the point of insanity and here we are eating. God forbid she sniff a crumb on us!
When I get to the recovery room, she is coming out of the anesthesia violently….and I do mean violently. She is kicking, screaming, scratching, pinching, thrashing around, it was horrifying to watch. She was like a child possessed. They got us out of recovery as fast as they could, we had to have her port access removed and then we ran out of the clinic with our tormented child with every intention of buying her a side of beef and a pound of french fries to go with it.
Not so much, she screamed every time we tried to stop for food, she was just so spazzed out from the anesthesia that she couldn't even speak. She started spitting and making up her own words and just mumbling….for those who know don't know her, she normally speaks very clearly, so for a few minutes I was having visions of some wierd neurological reaction. She was yelling at us in some foreign language that we couldn't even begin to understand. This went on for about 20 minutes.
She finally calmed down and passed out….sweet blissful silence. We're about to pull into our neighborhood and she freaks out! "I thought we were going to McDonalds!!!!" Ok….
We went to McDonalds, we got her some chicken, she was amazingly enough a beautiful smiling child. If only all our problems could be as easily remedied by french fries and chocolate milk. She was pretty thrilled with life once her stomach was full…her day ended peacefully with additional meals of spagetti, green beans, olives, chips and milk…..
As for her future plans…we found out we have the next whole week off without any treatment!! Yeahhhh, and the world rejoices! Plus, she's finished her steroids!! Sooo, we should have a week to see her personality come back to normal and her start feeling better before we have to go anywhere near the clinic.
The new protocol when we head back will be a Monday spinal tap, IV meds, and shots…then Tues, Wed and Thurs we only have to go up for leg shots. So, we're there 4 days a week instead of 5 which is good news.
She's going from 3 chemo meds to 6…so we have no idea what her reactions to these new medications are going to be. Her hair is falling out rapidly now, I'm betting by the end of the week we can give her a cigar and teach her to do Kojak impressions. Between our dog and Peyton there's hair all over the floor. It's pretty sad. Her blood counts are going to start dropping rapidly. We're in the process of getting the dedicated donor stuff lined up so that anyone who wants to donate specifically for Peyton can when she needs a transfusion. Please visit the website for the Florida Bloos Services, they have very specific timelines for giving blood as a dedicated donor. Give blood even if you aren't her type…which is A+….they need it, someone elses's child may need it, you never know who you might be helping.
When she's happy she's soooooo sweet, we wait and wait for those few smiles we get during the day. It makes it worth it to see that little bit of our baby come out. We pray for more good days than bad, for patience to endure the bad ones, and for strengh for the whole family to get through this together.
—-Anissa
ps…I have a dear person in my life who has suffered the loss of an unborn child this week. Please keep her and her family in your prayers.
on Aug 24th, 2008 at 10:21 pm
You’re amazing. I’m sorry your family and Peyton had to go through that horrible day. It sounds so painful. I hope you get more and more smiles.