These pictures are such treasures to me today! Look how happy she is. I treasured every second of walking to the park this day hand in hand with Gracie while we pushed our sleepy Tyson in the stroller. And so did she. She LOVES outside and the park...at least as long as the medicine doesn't overtake her body turning her into someone other than our Gracie girl. This week has been quite a week. No words could ever do justice. We are two worn out, completely emotionally spent parents. We were just saying I don't think anyone that doesn't do these steroids with their own young kids can get how hard they are. By raise of hands how many of you have had a Dr tell you your child has steroid psychosis? Maybe a few of you cancer mom's out there. It is completely heartbreaking...but of course not as heartbreaking as watching her in the middle of her roid rage psychosis where Todd is literally holding her in a straight jacket hold just to keep her from hurting herself. Can't count the number of times that's happened this week. There have been a few times where we're literally praying out loud and I'm crying just hoping somehow she can calm down. The nurses suggested tylenol or benadryl...haha fat chance that would ever do anything. We've been giving valium around the clock and adding oxycodone to the mix when necessary. The Dr last night said if she gets to bad and we can't handle her anymore we can bring her in to the ER and they'll give her IV valium. That thought of that is almost ridiculous...in a fit of rage if we even tried to put her in the car let alone for a 45 min drive she would totally LOSE it. Then once we got to the hospital she would be completely hysterical and probably throwing up as she's almost done several times b/c she's so mad we're giving her medicine. She's anxious anytime I'm in the kitchen doing dishes or any noise that sounds like crushing her medicine and starts panicking and saying "no more medicine, no medicine, I don't like it" and such while she works herself up. Needless to say I actually have anxiety about doing the dishes and cleaning for fear she will lose it. We have to whisper when it's diaper change time to get both of us ready and Tyson of course if on his own then as he seems to be often when we both have to try to keep her under control. She freaks about diaper changes and has had one shower (straight jacket hold with Todd) and one super short not very good bath with Tyson tonight. Otherwise TOTALLY refuses and so we do sponge baths. Why because she'll flail her body so wildly she will definately get hurt...with the older age comes greater ability to express the anger she feels with steroids. This is hands down the quickest onset I have ever seen. It seemed to start immediately. Eating gives us both HIGH high anxiety b/c nothing is ever right no matter how hard we try to do exactly as she asks. Everything seems to break....then it turns into a total meltdown of crying, screaming "broken, broken" over and over and "fix it"...but she's never ever ever satisified with the fixing or even getting a new one...and the crabbiness continues b/c she's hungry but can't eat b/c it's so upsetting. You know it's bad when you can't even remember how many meds you've had to give and it's 10 pm and your still trying to plan out how to give the daily dose of chemo that requires no food for 3 hours and the steroids cause hunger. I do know she's had over 8 meds today possibly over 10 but I seriously have lost track and dont even want to think through it. Tonight we had used up our last mac and cheese early this week when she requested it and then ate a little and didn't want it anymore and out of nowhere she demanded it and once she wanted it there was no persuading her of anything else even noodles with cheese. So Todd said he' go get some from the store she firmly refused and said "daddy, no go to store" so I said I would go and same story so I took a very long trip to the garage (aka safeway) to get some easy mac which she ate a few bites of and then got mad and didn't want it anymore. Todd got all dressed up to go to priest hood and I thought it would be a good break for him which he needs he's been here most the week and shes' glued to his hip day and night. He's mostly tried to study while layign or sitting with her watching her portable DVD player(lots of Barney) or the computer. Of course she was asleep when he was getting ready then woke up crazy mad and never calmed down much and Tyson woke up hungry and she needed Daddy. Yes I've been pushed off the bed and caused her to be angry just by being present many times. Hurts but I just remind myself its the drug not her.
Conference was very uplifting the little bit I heard today and hope we get the chance to rewatch all of it. Poor Todd was glued to Gracie as usual and got to hear very little. He's the official caretaker of Gracie and I'm the official caretaker of Tyson and errand girl for all needs. I'm sure I'll never be as strong as I am now running around getting everything for them while carrying 22 lb Tyson and occasionally holding 36 I'm sure more than that currently from steroids, Gracie. Everyone tells you how much you will love your kids before they are born...no one ever tells you how much you will hurt for them. Now I know first hand.
Todd had an interview in Salem this week...I actually made it most the day alone with both kids. He was so scared to leave us alone...poor guy. I don't think he was nervous at all for the interview just to leave us here. Crazy, crazy time of life. Can't wait to post on here in another year and a half and tell you all about our first month of no meds...and other incredibly exciting things!!!
Gracie certainly deserves better days and I long to see them. Hoping the steroids wear off soon.
Tyson boy has been my little ray of sunshine often this week when I needed it. He's such a little sweetie (or rather big, handsome sweetie). So grateful he's part of our family. He's moving around a LOT and super strong but still seems a little too top heavy to sit up well on his own and can turn aroudn in a circle and roll all over but no crawling yet. He's been saying "dada" a lot and is a smiley happy boy for the most part. Poor kid hope he's not too neglected from Gracie's special needs with cancer. I found a sticker on the roof of his mouth last night when changing his pajamas. Where was his mother when that happened? So grateful Gracie is part of our family too of course, just wish she wasn't suffering so much.
It's heartbreaking just to read about it all. It's probably hard for you & Todd to even remember what normalcy feels like anymore, eh? You're doing a great job - even with a sticker in Tyson's mouth. That kind of stuff happens with or without cancer. Give yourself a pat on the back (& some chocolate ice cream!).
ReplyDeleteLisa Smith
We are for sure not to that point but it gets worse each month. And we have over two years left! Carter actually told my 4 year old (who is THE sweetest thing in the world!) last month while on steroids that he wanted to punch her in the face with a brick. Uhhhh.... wasn't real sure how to respond to that one.
ReplyDeleteOur doctor has a few ideas if they get too bad. They may be ones you've already heard but email me if you want to know what she's mentioned. Good luck. :( Steroids are worse than cancer.
That sounds unbelievably TERRIBLE, I'm so sorry. I hope that the steroids where off quickly and sweet Gracie can come back. You, Todd and Gracie are AMAZING
ReplyDeleteI know I say it all the time, but you amaze me. Todd too, and of course Gracie girl. Those pictures are priceless and your kids are beautiful!
ReplyDeletePoor girl and parents! I have been on and off prednisone for an auto-immune disease for over 15 years.
ReplyDeleteI wish I had the excuse for acting like a three year old while on it! My heart reaches out to all of you for those times when the drug takes over. Please remember it is the drug. ugh.
The taste of the med is one I can conjure up with out much help. It is awful and partners itself with the suffering you have felt.
I'm an adult and still went through gag reflexes when approaching the countless initiial meds. One point I did wake up and just throw up every morning. Then take all my meds and head to work.
I wish I'd known early to communicate with my Dr. about loss of sleep, how it would suck the potassium from my body leaving my toes and feet locked in charlie horses in the middle of the night. Oh!!
But, even as an adult, I didn't figure to tell these things to the Dr. I just figured being nauseauted was my fate at the time. Then I discovered phenergen and Zofran. And had to take sleeping pills when on high doses of pred. Life saving.
Especially after one episode where I was up almost for a full week. I crumbled into a crying three year old!
Gracie is on my mind. Hold onto her. I have to hold onto myself still on that med. and just rock myself and remind myself that it will pass- but it doesn't make it easier to know a time frame. The hell is still hell.