Mathias did well at his treatment this week. He doesn't even cry when they put the needle in his chest anymore. He wants to help when he can and the nurses let him push the syringe when it's time to flush the line. He's back on the steroids and this morning he woke up at 8:00 asking for tacos. We're now all out of them, so I think I need to make a run to the store. So far he hasn't been interested in bacon, which is interesting. So weird how his cravings change. He has been saying he has a tummy ache, so I think I'm going to call the doctor. They said he may need an antacid when on the Decadron, so I think I may call for that.
Mathias' hair was looking pretty crazy again, so I gave him a bit of a buzz cut that now really accentuates his balding head. I think he looks really cute though. Mathias also has a crush on a girl here. I'm guessing she's around 9 or 10, but that doesn't stop Mathias. He stares at her and tries to play with her all the time. When she's not around, he keeps saying "where's my girlfriend"....so cute.
Wednesday, August 27, 2008
Saturday, August 23, 2008
Passing the time
So Mathias and I are pretty bored. This is a nice place to stay and all of our needs are met, but we are really looking forward to this all being over. Our day usually consists of bacon in the morning, watching Schrek or Spiderman or Cars.....playing on the slide, playing store, playing video games, playing chase....eating more bacon, maybe a game of bingo (ha!), watch more spiderman, ride the bike again....eat more bacon, another ride down the slide......etc, etc, etc.
Mathias likes staying here, but the same routine is now old. I cannot complain because I've met families that have been here for a year! Crazy. The past two weeks have gone fairly quickly so I'm hopeful the rest will be the same.
Mathias has been feeling really good. His counts were still good this past week, but I'm starting to wonder what they will be like on Monday. I have noticed a lot of buises on his body and he shivers sometimes when he says he isn't cold. It's making me wonder if his counts are crashing or if it's just due to his running and playing so much. There's always something to worry about, but I see kids here every day that look so much worse than Mathias so I have to be thankful.
One other thing I've found about Mathias is he has been very outgoing while he's been here. He tries to make friends with all the kids and before when we were still in South Dakota and I took him to daycare once in a while, he was a bit shy at first. I think it's interesting that he is so outgoing here... He's also been a bit naughty. He's so full of entergy that he tries to hit me...he says he's a superhero and he uses his blanket as a cape and then I get the punch. I also have to watch what he sees and hears. The other day there was a different version of Spiderman on TV and he heard a new line that he immediately started repeating "I'll kick your little a$$!"....followed by some kicks. I told him it wasn't something nice for little boys to say and then later on in the main dining room with everyone around, he started announcing it again. Definitely not appropriate for the Ronald McDonald House.. :)
I will update again after our treatment on Monday...
Mathias likes staying here, but the same routine is now old. I cannot complain because I've met families that have been here for a year! Crazy. The past two weeks have gone fairly quickly so I'm hopeful the rest will be the same.
Mathias has been feeling really good. His counts were still good this past week, but I'm starting to wonder what they will be like on Monday. I have noticed a lot of buises on his body and he shivers sometimes when he says he isn't cold. It's making me wonder if his counts are crashing or if it's just due to his running and playing so much. There's always something to worry about, but I see kids here every day that look so much worse than Mathias so I have to be thankful.
One other thing I've found about Mathias is he has been very outgoing while he's been here. He tries to make friends with all the kids and before when we were still in South Dakota and I took him to daycare once in a while, he was a bit shy at first. I think it's interesting that he is so outgoing here... He's also been a bit naughty. He's so full of entergy that he tries to hit me...he says he's a superhero and he uses his blanket as a cape and then I get the punch. I also have to watch what he sees and hears. The other day there was a different version of Spiderman on TV and he heard a new line that he immediately started repeating "I'll kick your little a$$!"....followed by some kicks. I told him it wasn't something nice for little boys to say and then later on in the main dining room with everyone around, he started announcing it again. Definitely not appropriate for the Ronald McDonald House.. :)
I will update again after our treatment on Monday...
Thursday, August 14, 2008
Homesick
Mathias woke up this morning saying "I want to go to grandpa's house, I want grandpa, I want grandma". I felt bad for him. He had a treament today that was a shot of Peg Asparaginase. The amount is apparently a lot for just one site, so they gave it in two injections...one in each thigh. There were two nurses, so he got them at the same time so that was good. He didn't feel very well today after that and complained that his tummy hurt.
As far as eating goes, he only wanted bacon today, so I fried up an entire package and put it in baggies in the fridge in our room. I'm trying to be prepared. They had bingo tonight (I feel like I'm living in a retirement home!) and the prizes were toys. Mathias tried to nab the toy he wanted without playing, but I got a card for him and he was patient enough to play and luckily we won pretty quickly. He was so tired that he fell asleep by 8:00...I'm thinking I should be trying to sleep because he'll be up early again....and probably demanding bacon!
As far as eating goes, he only wanted bacon today, so I fried up an entire package and put it in baggies in the fridge in our room. I'm trying to be prepared. They had bingo tonight (I feel like I'm living in a retirement home!) and the prizes were toys. Mathias tried to nab the toy he wanted without playing, but I got a card for him and he was patient enough to play and luckily we won pretty quickly. He was so tired that he fell asleep by 8:00...I'm thinking I should be trying to sleep because he'll be up early again....and probably demanding bacon!
Tuesday, August 12, 2008
Ronald McDonald House
We started Mathias' new round of chemo yesterday. He did not get the Methotrexate intrathecally, but rather ARA-C. He also got some other new IV chemo drugs. The rest of his hair should fall out soon. We were able to get into the Ronald McDonald House right away and we are all settled there. We have a room with a queen size bed, a full size bed, and a chair that pulls out to a single bed. We have a small fridge and microwave in our room and there are blinds that close any time of day to make the room pitch dark, so that is nice for daytime sleeping. The people here have been really nice. Last night a group made a turkey dinner for us, but Mathias was more interested in playing with all the new toys. So far he is still feeling pretty good. They increased his steroid dose almost double what it was last time and he will be on it for the next 7 days..then 7 off...then 7 on again. He has already started eating more and asking for tacos. A few minutes ago he ate a slim-jim, followed by a fruit snack, followed by cheerios, followed by a bottle of formula. Makes my stomach churn, but he just fell asleep, so I guess it hit the spot for him.
Subscribe to:
Posts (Atom)
