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The next dose wasn’t successful. That’s because I’m here by myself, and need about 10 hands to do everything. Unfortunately, I have only 2. LOL! I attempted sitting him on my lap, holding his legs down by squeezing them between my thighs, holding his arms with one hand, and his head in the crook of my arm, and pouring the spoonful into his mouth. It didn’t work very well. We spent about 20 minutes fighting, and I finally decided that I’m not about to be successful at growing more limbs or getting stronger, so I’m leaving the dose until Trev gets home. I know I *shouldn’t* do this, but what’s more important…that he gets the meds into him, or that it’s on time?

Anyway…the hospital called this morning (while we were still sleeping) and left a message that Mason’s protocol is going to change. In 16 weeks, his protocol changes to a once weekly dose of this drug, rather than what it is now (4x on one day, every 2 weeks)…they are switching us to that portion NOW, and we’ll continue doing it until week 130. I’m pretty sure this will be a bit easier than what we’re doing now…since the biggest fight is the fact that he has to do it 4x and not just once. They will start watching his blood counts really closely, charting it and all that…and really watch him. I just hope this works, and he doesn’t relapse because of a slight change in the protocol. The protocol has been tested for years and years, and they rarely change it. But because he’s not in the study, they can…and I guess we’re all just hoping it works.

Well, he’s been playing video games for 25 minutes now…it’s 3 hours past bedtime…I think I’ll peel him away, put him in bed and crawl in myself. I’m tired…been a long day. Next dose is at 6 am…not sure how it will go…I can guarantee not very easily on his part, lol. I’m just wondering if I’ll be awake enough to deal with it. Ugh.

So anyway, she was REALLY nice, and she was very helpful. She said…you don’t need a reward system. You don’t need to bribe him. Just sit him down, remain calm…and make him take the meds. If he throws them up, don’t get mad…just tell him “ok, we’ll be trying again in 5 minutes”…walk away, come back in 5 minutes and try again. I have to admit, I was pretty skeptical, but willing to try. I have tried all day not to get anxious about it, because she’s right…they know when we are about to lose control, and they lose control, too.

Well, the nurses said that we have to do the meds tonight…he’s so far behind and there isn’t a way to make it up. So, we do it tonight. And…if we can’t successfully get the meds into him, the doctors have ordered that he get an NG tube put in and we will have to go to the city every two weeks and have one inserted, meds delivered, and then go home. I’m not really wanting that.

At 6 we sat him down, gave him his 8 pills and he started bawling. I sat down with him and very calmly told him why he has to take his medicine. He asked for us to put it in sugar. The specialist said to allow him to make ONE choice in the delivery method…don’t let him manipulate it and make it a game, but allow one choice. So I told him…he could have it in sugar but he had to promise to take it that way or we would do the whole pills. He was still crying and asked if he could play games (video games) afterwards and I said yes. So Trevor crushed the pills, divided into 2 spoons, mixed with sugar, we got him a glass of water. He stopped crying, opened his mouth and swallowed half the spoon. Drank some water, repeat. The last bit he didn’t want to swallow…but eventually he did…we did high fives, washed him a bit (because some of the sugar fell of the spoon, and he dribbled water) and put the video games on for him. He’s successfully taken 1 of 4 doses this round. Next dose is at 12. It will be harder, but I’ll still be up, and if the “video game” trick works again, I’ll stay up with him while he plays a bit. 6 am will be rough, but noon tomorrow should be OK again. I’m determined to stay calm, let him call the shots (to a point) and get these meds into him. Get a routine going, let him know who is in charge, and we’ll be good to go. I’ll update after our midnight dose.

We had a bad day yesterday. Or rather, *I* had a bad day. I was fine, until I called to confirm that we were seeing Child Life today…and the receptionist called back to tell me that they didn’t know anything about it. The nurses from the oncology unit, who I had talked to REPEATEDLY this past month, never bothered to call and book the appointment. They said “we’ll get you set up to meet with Child Life on May 17″…May 16 rolls around and they haven’t even done it yet! I was SO mad, and SO upset. The poor receptionist. I must have sounded pretty hurt, because she was apologetic right away and was saying “well, we’ll talk to the nurses, and see if they can straighten this out”. Now, I didn’t just get upset because they never called Child Life, but because the specialist WITH Child Life said because she didn’t know about me, she couldn’t see me. I have been NEEDING this appointment the past month. I need help, I can’t do this my way anymore, because it’s just not working. So, I was incredibly upset that after being promised to have help at this appointment, all of a sudden I wasn’t going to be getting help and I probably wouldn’t for another month. I can’t WAIT another month. That’s 2 missed rounds of chemo, not including the ones he’s already missed! It’s just not acceptible.

So anyway…I started hyperventilating and freaking out…thank goodness the kids were watching TV on the other side of the house. I sat here and cried like I have never cried before. Sobbing. I couldn’t stop. It’s just all catching up to me. I’m feeling like I’m sitting right at the edge, teetering, and any little thing could push me right off the edge.

Anyhow…it’s been resolved. Child Life still doesn’t have time to see me, but we’re supposed to have them page her as soon as we get to the hospital and she’ll come meet with us. We probably aren’t going to get the royal treatment (one on one time with the specialist, in the playroom, which they lock all the other kids out of during the session). But at this point…all I want is a new suggestion about how to get him to take these meds. I’m sure she’ll just look at us like we’re crazy when we tell her all the techniques we’ve tried.

I’m getting the pharmacy to give us liquid form this time again…we’ll see if we can make it work, possibly. Or maybe I just need to have the nurses hold him down and start putting in an NG tube, make him realize that IT is the “hard way”…if he’d just take the meds, it would be easier. Ugh. I don’t know.

Well, I have to get the kids ready…my MIL will be here to get us in less than an hour, and I have to find clothes for everyone. I hope I’m not crazy by the time I get home.

There are a couple layouts that aren’t up there, though…but that’s cause they are for the Ultimate Scrapper contest…they can’t be posted on my blog or in any galleries except the contest gallery until after the contest is over. So, if you want to peek at them, you can see them here:

Week 1 - Hitch Your Wagon To A Star (the challenge was to scrap our best photo, and we had to have taken it)

Week 2 - Just What I Am (the challenge was to scrap a photo of ourselves, and journal about who we are through our own eyes)

I’m pretty pleased with both of the layouts. I really like them. The next round starts Sunday night, I think…so I’m anxiously waiting to hear if I’m into the next round. I hope I am, but if I’m not, I think I’ll be OK and handle it gracefully. There are some seriously AWESOME layouts in there again this round. Of course, I would love to stay and compete with them a little longer, so I have my fingers crossed that the judges like my layout!

I’m going to try and get more regular at blogging. I’m still feeling drained and unenergetic (is that a word?)…another round went by, no drugs, I just can’t get him to take them. It’s frustrating because I’m the adult, and I am the one who has to worry about this. He forgets immediately and goes and plays…not knowing what it’s doing to him when he doesn’t take them. Ahhh. Anyway…I’m thinking…so that I’ll be a better blogger, I’m going to just put “post to blog” on my calendar in Outlook. Maybe that will help. Who knows? LOL! Until next time…

So, we got a little bit more gov’t money back this week…so we went shopping in the city again tonight. Got some new stuff. Let’s see…I got a new stove. Should be here Tuesday or Wednesday, hopefully…so I guess I have to get my kitchen cleaned up. I had this goal…that I wasn’t going to clean my stovetop (which is looking pretty stinking bad right now, I have to admit) until I got a new one. There just wasn’t a point…Trev spills over when he’s cooking and the pan underneath the burner is literally black. There was NO way I was going to scrub that sucker when I knew I was getting a new stove soon. LOL! So anyway…new stove, got a good deal on it. We got a flat ceramic top one…no warmer, and it’s not self-cleaning. But we had decided against self-cleaning because they get SO hot, and we live in a trailer, which are more likely to catch fire. Great.

What else? Oh yes…we bought new phones. If you remember, I beat the heck out of one of our cordless phones the other day. Guess what? It still works. But, the batteries on those cordless phones SUCKED so bad, you’d get like a half second warning and the battery would die. So, we bought new, good phones…5.8 GHz, nice silver, dual handset…they act like walkie-talkies too, and these ones you can have a conversation with both handsets at once. The old ones, if you had one on, the other wouldn’t work. Drove us NUTS. So, I will try not to smash this one. Maybe I’ll keep the old ones for getting rid of my frustrations. Haha!

I wanted to buy an EHD. I went to 3 stores trying to find a 250 GB one…nobody had them! How crazy is that? Guess I’ll have to order it online. I just want one with a fan…which is why I’m scared to order it online…what if I get it and it sucks? At least if I buy it in store, I can talk to the salespeople and find out if it’s got the features I want. Basically I want something that is 250 GB, has an internal fan, and a power button. That’s ALL I’m asking for, folks.

AND…then we went to Wal-Mart. I know, not as cool as Target, but we don’t have Target up here. LOL! So anyway…we went to Wal-Mart…my favorite place on earth. I bought another pair of yoga pants (LOVE these…so comfy, and they are long, too), and 2 pair of denim shorts/capris thingies. I have no idea what to call them. One pair comes to just above my knees, the others are below a little. I’m not keeping up with fashion very well these days. But anyway…I like them…and they are comfy. Hard to find things I like in my size, so I’m happy when I can find 2 pairs that fit! Trev wouldn’t normally let me buy that many pairs of pants at once, but he knows I need some (the one pair of shorts I’ve been wearing for 3 years have worn out completely) and knows how frustrated I get when shopping…so if he can keep me happy with that, then he does it. LOL!

Well, I need to get to bed…it’s late…and I have to work EARLY tomorrow morning. I told them I was available between 9 am and 9 pm. But they have me starting at 8 am tomorrow. Go figure. LOL!

The phone died while I was trying to force the spoon into his mouth. Trev called and it didn’t even last 30 seconds. So, I would have called the hospital, but no phone. Anyway…I got great pleasure out of smashing the phone against the dishwasher top. Stupid thing doesn’t even break right…the back flew off and the battery fell out. I kept on smashing, but it survived. Once I calmed down, I put the battery back in and the backing back on, and a few minutes later it started ringing when Trev tried to call again.

Anyway…gotta call them tomorrow morning once the battery is finished charging. I’m just going to tell them that I’ll bring him in every 2 weeks, we can stay in the hospital in-patient and they can give him the meds. Cause…I’m done. DONE. They think I’m not doing it right. These are the SAME people that said we weren’t doing it right when we had to give him anti-seizure meds…and then they tried and realized that he’s just fighting for the sake of fighting. They didn’t win, either…so it’s not just me. I think they’ve forgotten…it’s been a year…guess they need to learn their lesson again.