Today's Clinic Appointment

Clinic went well today, overall. I was a little livid over the Pentamadine mix up (he was supposed to get it aerosol, and the pharmacy sent up the IV version instead, I wasn't in the room at the time and though my mom questioned it they said, "No, he's getting it IV this week.", 2 minutes after I get back to the room Nancy (his NP) comes in and says that they'll be starting his aerosol soon! ) I was pissed, she apologized for the mix up and said it would be taken care of next month. But anyway, the rest of the day went well. Donavynn was pleased that he got a clinic room with a Wii in it, so he spent the morning playing that. That surely spiced up his bad mood. We learned today that he has gained 10 lbs on the steroids and he'll be glad when they are done. That is what he told the nurse - "I'm puffy because of my medicine, but I'm still cute!" lol And he is, as adorable as ever. I have pics that I will post when I have time. His LP went well. That is the last one for 6 weeks I believe. He starts consolidation next week, which means we will be having our first hospital party. He is allergic to the PEG so they are ordering him the Erwinia. The only downside to that is for every one dose of PEG you need 3 of Erwinia so he will need to get that (at the hospital) Monday, Wednesday and Friday on the weeks he needs it. So the tentative plan for now (if they can get the Erwinia) is to go up Monday and to stay up from Wednesday to Saturday - he has to be an inpatient for the Ara-C on Thursday and Friday. We aren't 100% sure if they will be able to get the Erwinia or not, it is experimental so his insurance won't pay for it. So they are trying to get the hospital to pay for it, which they should, thankfully, (It is $6000 a dose or $1800 a week when he is on it twice a month for this phase) we just need to make sure that they can then get the medication.

His ANC is good still, it is actually higher than last week - 7400. Which they said isn't surprising becasue of the steroids and they want them to be up because I believe the next phase is count dependent and the Ara-C will drop them quick and hard. So that is when we will be worried about infection.

Tonight he is exhausted, sleeping already and he was complaining of a headache from the LP. My heart breaks for him. I hate to see him feeling like this. Although I have succeeded in my quest - he is actually looking forward to his hospital party next week. Remember, for updates next week you will have to check the blogspot (Wednesday-Saturday).

It came up in conversation at clinic today that Mercy does between 10 and 20 BMT a year there! That floored me! That is a lot. I guess that is good in one way, they do a lot so they know what they are doing. But so sad, that there are that many children needing them.

I am desperatly trying to find positives in this experience that we are living right now, and one that I found was that having inpatient stays for treatment instead of fevers may allow me to talk to other families and possibly make some local friends who understand our battle. Before we were only in for fevers which means you aren't allowed to leave the room, well he's not, which means I don't leave much either.

I feel like I am forgetting things. It has been such a long day and so much has happened. He has adapted well to this schedule again. He understands everything as best as he can and he just rolls with it. Today, we were getting out of the car to go into clinic and I put his mask on him and he asked "Mommy, am I neutropenic?" My heart broke, it still hurts that he knows that word and that he knows what that means, but the upside is that he understands that when he is, we are hermits for awhile! lol He used to yell when he was neutropenic because he would get such cabin fever but now he understands and goes with it. I think that is all for now. I'll update again when there is more to tell. Thanks for the prayers please keep sending them up!