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!

Waiting, always waiting...

Donavynn has his 6th and final Erwiinia shot for about 4 weeks. But last night started a crazy whirlwind for our family. It started when Donavynn's temp kept fluctuating between 100.6 and normal. So irritating, b/c it was 11:30 before we finally went to bed if you want to call it that, and the nurse on call wouldn't budge on their "protocol". So we know Monday has ANC was 0, so this is really concerning to me. Donavynn, Rachael and I finally head to bed (she went w/ me this am so stayed here last night) at 1:30 I wake up to Donavynn screaming that he is going to be sick, so off to the bathroom we run. Thankfully my husband was home by then and came to our rescue, as loving and supportive as always. We got things settled down and headed back to bed. But for the next 2 hours or so Donavynn was incredibly antsty (btw we are monitoring his temp throughout this and it's still bouncing) and whining in my ear. He says he is scared, but that is all. Dave finally comes to get him at 3:30 when he realizes that we are still up, and then Dave comes to get me at 5:30 because Donavynn's screaming that his butt hurts, and it is at this point that I wish these oncologists could spend just one of these nights w/ our kids so that they would understand why we are so frustrated when we hear "call me back when it hits 101.5" We are worried, and nausea and vomiting (2 weeks after finishing chemo), "almost" fevers, and booty pain sure don't help us to relieve that worry. Anyway, we were back up at 7 to head up to clinic. Thankfully they drew cultures, and all went well w/ his shot. But his ANC is 10, platelets are 29, and so we have to go back up on Friday, b/c the cut off for platelet transfusions is 20. We were supposed to be done for 1 week, going back up again next Thursday for his LP, but no such luck. Provided he doesn't spike (he's still hovering at 100.5) we have to check his counts locally tomorrow night to save some time Friday morning. The only reason I'm not totally freaking out is b/c they drew cultures so even if he doesn't spike at least they will be watching for a problem and can call us to come up. Oh and the booty pain, he has a small laceration on his bottom thanks to all the poo from the chemo. They said it is itty bitty so just keep it clean and give him sitz baths to help soothe him. So I'm praying that that doesn't become a bigger issue. I guess that is all for now. One crazy night, and now we wait, for culture results, for platelets, for the fever to go away or come full force and take us back to the hospital. It is heartbreaking to see him like this. I couldn't even get him to walk into clinic this am b/c his legs are so sore from getting daily or BID shots for 2 weeks. So please send up prayers that he starts to feel better and that his cultures are negative. I'll post an update when there is news to share.

Update

It has been a long week beginning w/ coming home Sunday night to turn around and head back up Monday morning and then blowing a tire on the way home! lol But he did great w/ his Erwinia shots this week and has 2 more next week. (Monday and Wednesday) He has been on the GCSF and his counts still tanked but we are hoping that they are recovering now and that we won't have an illness this time. I made a boo boo last night, forgetting that he has tubes in his ears I encouraged him to lay down. Consequently his ears will killing him last night. The doctor told me to use his Ciprodex ear drops to prevent an ear infection, so hoping that will help. I felt so bad, he's had them for a year and it just slipped my mind. Other than that all is going good here. He and all of us are missing his sissy. But she is having a blast w/ her GG. That's all for now, please pray that he remains fever free so we can stay home and stay on track w/ his treatment schedule.

A Long Night

Donavynn was up most of the night b/c of his upset stomach, diarrhea and fever. He finished his last dose of Ara-C this morning at 5. So I'm hoping that these symptoms will clear up now but after his ANC jumped so much overnight I'm not sure. We are waiting on a stool sample b/c as of right now his blood culture is still negative (Thank God). The doctor explained this am that their counts can do that as a simple stress response to a fever, however this has never happened to Donavynn. If his counts jump, there is a reason. So anyway, w/ his diarrhea we are trying to rule out other possible sites of infection. Right now he is sleeping. I'm hoping this afternoon will be a better one for him, and that the diarrhea, and vomiting will clear up. I am praying that for once he did something atypical for him and his counts are a reaction to his fever. Just once, I want my fears to be wrong. If they are we could be home tomorrow, if not who knows... so right now things are still pretty up in the air and time will tell. I'll post again when I have more information. Unfortunately if we don't get his stool sample soon we won't know anything today as they only run the C-diff tests once a day. But as soon as I know something I'll post it.

So Much For That...

Ok so he did great until 3 o'clock this afternoon - his temp rose up to 102.2. So they drew a CBC and cultured him. His ANC was 1140 yesterday and jumped to 4770 today, which shouldn't have happened since he had cytoxan a week ago, if anything they should be tanking, which tells me he likely has an infection. So my guess is his culture will pop positive by morning. I just hope it isn't anything too bad, and am thankful that we are here so they can nip it in the bud. So chances are we won't be going home tomorrow. Other than that he has been doing pretty well today. He has slept alot but he did perk up for awhile, talk to daddy on skype, sit up in the chair and play his DS, let me give him a sponge bath and even played w/ his lego's so overall he seems to be feeling pretty good. He just got his first evening dose of Benadryl/Reglan b/c he was getting sick and now he's resting again. Please pray that whatever is going on isn't anything major and is easy to fix. My poor kid, I would just like for something to be easy for him.