Day +14
WBC holding at .7
All day Max was a little crab. He just couldn't get comfortable. And on the advice of the resident I tried to increase his amount of formula vs. apple juice. It's just so much easier to give Max apple juice because it's in the room and ready to go. Formula is in the fridge and we have to warm it up in the microwave out in the kitchen area. But since he's been doing so well drinking, it made sense to give him more nutrition and calories via formula. Maybe this was a good idea, but at the end of the day, after his belly was looking enormous, he puked like he's never puked before.
And then he felt a little better. After some anti-nausea meds he napped again and woke up at the end of the night a little more like his old self.
Speaking of his old self, his bad butt is back. So we're back to the rubber cement product, ILEX, and hopefully that will help. The good news is that his count is still a good number and his rash is much much better. If his tummy and butt can just feel a little better, he'll be the champ again that we know he is.
As for G, well she and I attended our first event in the Metrodome. We went to the Minnesota Viking preseason game against the Cardinals. We took a city bus to the game and went right to our seats. They were pretty high up in the upper deck but the view was pretty good. Grace was into the game, and enjoyed the scoring because that meant we got to try to sing the Vikings song (who knew) which begins with "Skol, Vikings, Let's Win This Game" Ahh these Minnesotans love their heritage. The mascot was a treat too, his name is Ragnar, and according to his website he is the most recognized mascot in the world. Of course, that could be because he's pretty much the only human mascot in professional sports. Anyway for a treat, check out his story:
http://www.ragnartheviking.com/about.htm
Grace and I shared a bottle of Coke and she was content to just sit in the seats. I asked her many times if she wanted to get a snack but she always said no. She was very well behaved. A lady next to us gave her a purple bead necklace and Grace was happy. The game was slow paced and unmemorable except for former Northwestern running back Damian Anderson running for a long touchdown for the Cardinals. During one long injury time out the TV screens kept showing different couples framed by hearts. This was called the "Kiss Cam" and the idea is that when you see yourself on TV you should kiss. The crowd seemed to really enjoy this. One time it stopped on a couple and the woman hid her face and the man was trying to shake his head to get the camera to go on someone else. The many possible reasons for their behavior were fun to consider.
Just before halftime Grace asked me if the game was over. I said no, and is this a good time to get a snack. She said yes and she wanted to go home so I said OK. As we got out to the food area, halftime arrived and a dome full of people surrounded us. Grace looked like she had to go the bathroom so we went in the men's room. I guess it's been awhile, because I hadn't seen the classic stadium "urine trough" in a long time. I told Grace it was too dirty and we got out of there. With a bucket of popcorn in hand we headed for the exit. Grace opened a door and we were in a room that led to the outside. She tried and tried to press a button to open the door but it never opened. So I pushed the door and we headed out. What we forgot to realize is that the entire roof of the Metrodome is supported by forced air. So the exits open an air lock. As we moved outward the air began to push us out and Grace almost got knocked over. Instead all her hair blew forward over her face and the top third of her popcorn just blew out of the container into the crowd. Grace just lost it. She's been so emotional and she just got so mad. "That's not nice! I want ALL the popcorn!" Tears were streaming, people were feeling awful for her, and we just sulked our way out. Finally we found a taxi and we headed home. In the cab she said she had a great time at the game but a bad time LEAVING the game. When I told her how she looked, she stepped back and said, "Wow, Dad, that was funny." Now I'm back at the hospital for what I hope is a peaceful night.
We are doing our best to help our kids while we are all away from home. We will have many memories of our time here. But the luau the other night and the unsealed air lock tonight will be two of the best.
Thanks for your support, especially all of you who take the time to write in the guestbook (our lifeline),
--Mike
addendum from Mike 8/29 6:08 A.M:
Since I returned to the hospital at around 9:30p.m. Max has been throwing up all night. But that's not all. Let's just say that it's been coming out both ends. The want a CT Scan in the morning to look at his brain. Everyone feels that the most likely explanation for this is chemo. It's strange to us that Max's tummy would start to go bad on day +14, but we're still in that window of when all the bad stuff should happen. They want the CT Scan to make sure that his brain is still doing OK as far as the hydrocephalus is concerned. Unfortunately non-stop vomiting is also a sign of high pressure build-up in the brain. Please pray for Max that his stomach gets more settled and that his brain is OK.
And now the big news. The nurse just came in and said, "I know it's been a rough night, but his counts are really good: his white blood count is 1.4" Grow cells grow!!!!!
--mike
All day Max was a little crab. He just couldn't get comfortable. And on the advice of the resident I tried to increase his amount of formula vs. apple juice. It's just so much easier to give Max apple juice because it's in the room and ready to go. Formula is in the fridge and we have to warm it up in the microwave out in the kitchen area. But since he's been doing so well drinking, it made sense to give him more nutrition and calories via formula. Maybe this was a good idea, but at the end of the day, after his belly was looking enormous, he puked like he's never puked before.
And then he felt a little better. After some anti-nausea meds he napped again and woke up at the end of the night a little more like his old self.
Speaking of his old self, his bad butt is back. So we're back to the rubber cement product, ILEX, and hopefully that will help. The good news is that his count is still a good number and his rash is much much better. If his tummy and butt can just feel a little better, he'll be the champ again that we know he is.
As for G, well she and I attended our first event in the Metrodome. We went to the Minnesota Viking preseason game against the Cardinals. We took a city bus to the game and went right to our seats. They were pretty high up in the upper deck but the view was pretty good. Grace was into the game, and enjoyed the scoring because that meant we got to try to sing the Vikings song (who knew) which begins with "Skol, Vikings, Let's Win This Game" Ahh these Minnesotans love their heritage. The mascot was a treat too, his name is Ragnar, and according to his website he is the most recognized mascot in the world. Of course, that could be because he's pretty much the only human mascot in professional sports. Anyway for a treat, check out his story:
http://www.ragnartheviking.com/about.htm
Grace and I shared a bottle of Coke and she was content to just sit in the seats. I asked her many times if she wanted to get a snack but she always said no. She was very well behaved. A lady next to us gave her a purple bead necklace and Grace was happy. The game was slow paced and unmemorable except for former Northwestern running back Damian Anderson running for a long touchdown for the Cardinals. During one long injury time out the TV screens kept showing different couples framed by hearts. This was called the "Kiss Cam" and the idea is that when you see yourself on TV you should kiss. The crowd seemed to really enjoy this. One time it stopped on a couple and the woman hid her face and the man was trying to shake his head to get the camera to go on someone else. The many possible reasons for their behavior were fun to consider.
Just before halftime Grace asked me if the game was over. I said no, and is this a good time to get a snack. She said yes and she wanted to go home so I said OK. As we got out to the food area, halftime arrived and a dome full of people surrounded us. Grace looked like she had to go the bathroom so we went in the men's room. I guess it's been awhile, because I hadn't seen the classic stadium "urine trough" in a long time. I told Grace it was too dirty and we got out of there. With a bucket of popcorn in hand we headed for the exit. Grace opened a door and we were in a room that led to the outside. She tried and tried to press a button to open the door but it never opened. So I pushed the door and we headed out. What we forgot to realize is that the entire roof of the Metrodome is supported by forced air. So the exits open an air lock. As we moved outward the air began to push us out and Grace almost got knocked over. Instead all her hair blew forward over her face and the top third of her popcorn just blew out of the container into the crowd. Grace just lost it. She's been so emotional and she just got so mad. "That's not nice! I want ALL the popcorn!" Tears were streaming, people were feeling awful for her, and we just sulked our way out. Finally we found a taxi and we headed home. In the cab she said she had a great time at the game but a bad time LEAVING the game. When I told her how she looked, she stepped back and said, "Wow, Dad, that was funny." Now I'm back at the hospital for what I hope is a peaceful night.
We are doing our best to help our kids while we are all away from home. We will have many memories of our time here. But the luau the other night and the unsealed air lock tonight will be two of the best.
Thanks for your support, especially all of you who take the time to write in the guestbook (our lifeline),
--Mike
addendum from Mike 8/29 6:08 A.M:
Since I returned to the hospital at around 9:30p.m. Max has been throwing up all night. But that's not all. Let's just say that it's been coming out both ends. The want a CT Scan in the morning to look at his brain. Everyone feels that the most likely explanation for this is chemo. It's strange to us that Max's tummy would start to go bad on day +14, but we're still in that window of when all the bad stuff should happen. They want the CT Scan to make sure that his brain is still doing OK as far as the hydrocephalus is concerned. Unfortunately non-stop vomiting is also a sign of high pressure build-up in the brain. Please pray for Max that his stomach gets more settled and that his brain is OK.
And now the big news. The nurse just came in and said, "I know it's been a rough night, but his counts are really good: his white blood count is 1.4" Grow cells grow!!!!!
--mike
posted by Mike Ciacciarelli
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