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Joey update


Forum: Recurrent Miscarriage and Pregnancy Loss

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  #1  
February 21st, 2009, 09:31 AM
esparando para bebé's Avatar Proud Car Seat Technician
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From his PR:

Quote:
Not sure what the last update was so I'll go over the major stuff real fast and then give the current updates. As everyone knows Joey was diagnosed with LCH on Jan 5 and started treatment immediately.

On Feb 2 we started weaning Joey off his steroids, or at least we thought we were weaning him. Turns out pharmacy messed up the prescription and instead of weaning him he took a drastic drop (went from taking 4.2 mg to taking .84 mg in one day). We didn't find this out until last night and I am obviously NOT happy. This also explans why his lab counts dropped so low last week, which delayed his chemo. His CT scan came back and there is major improvement but still active disease, so we did not move to continuation but are repeating initial for 6 weeks. So he started back on the full dose of steroids last night after his chemo (and thats a whole other pharmacy story that you don't even want to get me started on). Roid rage is back in full force and he seems really really tired today. I don't remember ever seeing him sleep this much since the first 2 weeks of Chemo. He's barely eating, and that has me worried. Yesterday he took all of 2 bottles and so far today he's taken one. No solids either, this is not like him. I'm trying to remember he's rebounding from extremely low white blood count and ANC levels and he got chemo yesterday and restarted the highest possible dose of prednisone you can possibly give a child his weight. he also threw up a few times last night and today, but they are sure its from the chemo. So since his formula is upsetting his tummy we're having to give some pedialyte and some water to keep him hydrated, and we have to force that in with a medicine syringe.

Last week we also had a horrible bout of constipation. He was on Colace for 4 days before we finally git some stinky diapers, then it was a full 36 hours before we got a full diaper. So for now they are keeping him on colace daily to prevent that problem from happening again. He was miserable and barely sleeping and eating little, though not as little as he has the past 2 days.

All in all he is doing well, just not feeling too hot after this chemo. He's lost very little hair and I can tell but most people can't. My BIL shaved his head completely, and DS1 got his head buzzed. Of course he wanted to glue his hair to Joey's head if his hair fell out. Gotta love how caring he is.

Yesterday before the Chemo Joey had his Littlest Heroes photo shoot. It was amazing. I loved our photographer and anyone living in the OC or surrounding area, if you ever want a prof on locatrion shoot I strongly suggest trying her. She had to have taken hundreds of pics of Joey, the older kids, us as a family. We got a shot of Joey, butt naked, with black feather wings, from behind. Really cute, can't wait to see. ANd then we got pictures of David crouching on a ledge with black feathered wings on and then jumping, mid-flight. Amazing. I can't wait to see the finished product. The kids enjoyed it and are already asking when we can do this again. And of course Joey was the STAR. Littlest Heroes is an amazing project and we feel so blessed to have the opportunity to catch our family in the midst of this battle.

And for the final update. Apparently an unnamed person submitted Joey's story to LegoLand and LegoLand sent 5 tickets for our family to just "catch a break and enjoy". I cried. I don't know who submitted Joey's story but it has to have been someone who knows how much my kids LOVE LegoLand. Not sure when we're going, have to see how Joey does in the coming weeks. But we will definately be taking the kids soon.[/b]

From CaringBridge:

"Ugh, precriptions, pharmacies, and insanity. Last night I went to pick up all of Joey's prescriptions and ran into complete nightmares. First off, the first pharmacy I took them to had 2, but not the third. But they didn't tell me that they didn't have the same strength of his steroids as he's been taking, so he would have to take more liquid to get the same dosage. Then we found out that the last time we got this filled 2 weeks ago there was the same problemn, but they did not tell us to take more liquid so he went from being on 4.2 mg of prednisone to taking less than 1 mg of prednisone instantly because the pharmacy messed up and didn't check what they were doing. In hindsight I should have checked and compared the 2 bottles. Luckily I was able to get the doctor called to confirm how much to give him, and this morning the doctor is calling in the right dosage amount to a pharmacy that does have this strength so he can take the less liquid for same med route. Then the next pharmacy had one of the ones the other didn't but didn't have the other one. So we picked that up (a 30 minute ordeal because of trying to figure out insurance issues). Then we headed to the next one to get the final prescription where they had the med but they hadn't billed both insurances they are suppose to bill and they refuse to bill CCS. So we paid the co-pay and took the meds and finally got home at midnight. Thank goodness for people who were willing to babysit (gramma and uncle Patrick). I would have lost my mind otherwise.

Joey's roid rage is back with a vengeance. But we are dealing with it and enjoying the snuggles we do get, even amidst the screaming. Amazing how quickly the roid rage sets in and how long it takes to go away.

Joey has had some nausea since his last chemo and thrown up a few times. He's barely eaten the past 2 days and we've had to give him some pedialyte and water (and apple juice) with a med syringe but he seems to be picking up some. He's slept most of the day, but I try to remember that the chemo and the steroids can make him very sleepy."
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  #2  
February 21st, 2009, 01:02 PM
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hugs Traci, I'd have decked the pharmacist that screwed up something like that... yay you for finding a solution!

I hope he continues to feel better, and I hope his appetite returns!
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  #3  
February 22nd, 2009, 01:06 PM
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Quote:
I hope he continues to feel better, and I hope his appetite returns![/b]


hugs!
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  #4  
February 27th, 2009, 09:17 PM
DawnN's Avatar Mega Super Mommy
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Continued prayers for precious fighter Joey!
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