Ara-C stay updates from morning to early evening

This stay, as with all Ara-C stays has been a rough one. The diarrhea started last night, the fevers are starting the morning and the N/V has been going on since before we even started the chemo yesterday. He is feeling ok for the moment, but his temp is rising. However, we look at it as... if it is making him feel this bad then it must be doing it's job. We got the GCSF shots delivered today and he will be starting those tomorrow after his Erwinia shot. We are supposed to go home tomorrow but w/ the fevers and vomiting it isn't likely. They usually keep us at least one extra day if not 2 b/c he gets his Erwinia tomorrow and then he is due again Monday so they hate to send us home Sunday to turn around and come back up Monday. But during these two weeks it doesn't really matter a whole lot, we are here at least every other day anyway. We just pray that he doesn't get sick and we are happy. But it took the GCSF 2 weeks last time to makes his counts recover... We really hate the nightly shots of GCSF followed by the every other day shots of Erwinia but he understands that it is all to make him better. That is about all for now, just overall sick feeling. Praying he starts to feel better soon... at least as soon as he finishes his last dose of Ara-C at 6 am tomorrow. Thanks for the prayers.

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Late Morning

His temp is now 104.7, and he is a little hypovolemic. His feet are pale and he's tachycardic so they are giving him a bolus of normal saline now. They gave him trilasate to take the fever down and hopefully that will start working soon. They are also going to schedule Benadryl. One of the doctors feels that the fevers from the Ara-C may have an allergic component. So we are going to try that, I hope it works but if it does I just wish we had figured that out sooner as we only have 1 more Ara-C stay after that. They drew cultures which is standard when they spike a fever, and a CBC if he is neutropenic they will start antibiotics as a precaution. They are monitoring his BP, last check was 85/63 which is a little low but he usually runs low anyway. I'll keep you posted with any new updates.

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4pm

His fever is on it's way down. It has been fluctuating most of the afternoon and he ended up getting 2 bolus's of NS. But they did the trick. His capillary refill is good now and so is his coloring. His temp was back up to 104.7, so they gave Tylenol and have that scheduled for every 4 hours in hopes that once we get it down it will stay there. The last time they checked it it was down to 102.5 which was a big improvement in just 30 minutes or so. He is playing with his cars in his bed now which is a huge improvement from the rest of the day. That is about all for now.

Hr 42 Level

Is 0.65 - not low enough. They will draw another level between 3 and 4 tonight (hr 48) and they want that to be at least 0.4 or less if not they up the leucovorin I believe. So he isn't clearing as fast as last time, which I don't understand b/c he is doing so much better this time w/ eating and voiding and BM's - which he needs to do to clear it from his system. Oh well. Hopefully it will be below 0.1 sometime tomorrow so we can go home. We are tired of being here already, ready to get home and enjoy the little time we have between now and our next admission. Keep praying that he clears fast! Thanks for all the support!

My Child is Brilliant!!!

Ok so Dr. Shore asked why I have a giant NO COLACE sign on his wipeoff board. Well it's because he doesn't need a stool softener that has never been an issue. The chemo never stops him up if anything it has the complete opposite affect. And I have always thought that it is so sad that he knows the name of his meds and what they look like. That he can call them by name. But this morning while I was in the shower the nurse brought in colace. Thankfully he told her he doesn't take a red pill! lol So I think she left to get it in another form and he called me and said "Mommy, she's making me take a red pill" so I told him I'd be right out and if she came back to tell her that I said he doesn't need that. Now he is always so polite and cooperative but if he knows he isn't supposed to have it, he isn't so nice apparently. She came back in and I heard him. "I DON'T NEED THAT!" Then he screamed for me! lol I am so proud of my little man for speaking up for himself. If more patients were as aware and would question things, there would probably be alot less errors. As we are only human and humans make mistakes but we need to trust ourselves that as the pt we know more about ourselves than others. I have no problem when a pt has asked me... "what's that for?" "I don't usually take this" Then I can put them at ease by explaining why &/or look again and make sure there wasn't an error b/c often time doctors order things in the hospital that the pts don't take at home. Ok, off the soap box, just thought I would share my little moment that my son showed me once again how amazingly smart he is!!! Off to play in the playroom now!

Methotrexate Stay AGAIN

We got here yesterday at 8am and were in our room by 9:30. He finished his chemo at 3:30 today and drew his initial level which Is 70.11, and it needs to be below 0.1 before we can go home. So now we wait. He has done really well this time around. He has been eating and drinking. Not much, but anything is better than his usual nothing. He has had a little nausea but other than that it has been a good stay. I'll keep you posted w/ his levels when they are checked. I believe they will be checked again at 4 in the morning or so, but I'll have to double check. Thanks for all the prayers!