A little boy in Philadelphia is fighting for his life today. His name is Dante. He is 17 days younger than Brody.
He has neuroblastoma. His mom, Jo, has already had one son die. Dante has been fighting this awful cancer since December 2007.
We thought Dante was about to turn the corner, then last week the bottom fell out. The cancer has spread. There is one treatment left: MiBG. Jo was given the choice of doing no treatment at all, and taking Dante home to die. Or doing the treatment, knowing it might kill him.
They chose to fight, and are doing the treatment, starting today.
The next 24 hours are critical for Dante, to see if he survives and can handle the radiation levels of the treatment.
If you pray, please pray for Dante. And if you don't pray, please think good thoughts for him.
Tuesday, November 11, 2008
Sunday, November 9, 2008
If I owned my own Children's Hospital. . . . .
If I owned my own Children's Hospital,
1. I would make sure that there was an adults only bar where parents could come and just get a little nip to take the edge off. Nothing alcoholic-y, no drinking til intoxication. I'm talking one drink per person - a glass of wine, a pint of beer, a vodka cranberry, etc.
One drink, because after you leave your child passed out in the OR, no matter how confident and positive you feel, you really just need a drink.
2. I would require full size actual beds for parents to sleep in if they stay in their child's room overnight. No pull out couches that torture backs, and no chairs that become beds. Parents are stressed out enough. Uncomfortable enough. And sleep is paramount because parents are already probably not going to sleep well, and so the least the hospital could do would be to give you a comfie spot to lay your head.
3. Roving masseuse. I think that in addition to the nurse who checks on your child every 30 minutes after surgery, all through the night, that if they wake you up, you get a 10 minutes neck and shoulder massage from a professional.
4. The pulse ox monitor would NEVER ring in the room. If the oxygen is getting lower, it does NO ONE any good for the fracking thing to beep in the room, and wake up the child so that he cries and cries, which in turn continues to lower his O2. Make the stupid thing ring at the nurses' station, where people who can actually fix a desat can hear it.
Ok, these are all the special things that would be at my Children's Hospital. Can anyone think of others?
1. I would make sure that there was an adults only bar where parents could come and just get a little nip to take the edge off. Nothing alcoholic-y, no drinking til intoxication. I'm talking one drink per person - a glass of wine, a pint of beer, a vodka cranberry, etc.
One drink, because after you leave your child passed out in the OR, no matter how confident and positive you feel, you really just need a drink.
2. I would require full size actual beds for parents to sleep in if they stay in their child's room overnight. No pull out couches that torture backs, and no chairs that become beds. Parents are stressed out enough. Uncomfortable enough. And sleep is paramount because parents are already probably not going to sleep well, and so the least the hospital could do would be to give you a comfie spot to lay your head.
3. Roving masseuse. I think that in addition to the nurse who checks on your child every 30 minutes after surgery, all through the night, that if they wake you up, you get a 10 minutes neck and shoulder massage from a professional.
4. The pulse ox monitor would NEVER ring in the room. If the oxygen is getting lower, it does NO ONE any good for the fracking thing to beep in the room, and wake up the child so that he cries and cries, which in turn continues to lower his O2. Make the stupid thing ring at the nurses' station, where people who can actually fix a desat can hear it.
Ok, these are all the special things that would be at my Children's Hospital. Can anyone think of others?
Saturday, November 8, 2008
High
Jeremy took Brody for the first half of the day, and at around noon, he dropped him off at my office so I could take him to the hospital. Neither of us have any leave left so we had to split the day up.
As we were walking into the hospital yesterday, I received a call from the hand clinic saying that they were running behind, and so instead of appointments, they were just going to open the clinic at 2pm and see patients first come first serve.
Why, then, did we have to wait 6 weeks for an appointment if it's just going to be a free-for-all?
Sigh.
So I make the decision to ditch the hand clinic and go straight to pre-op. Brody was still in a wonderful mood, despite not having eating since 7am. We checked into the hospital, and I wheeled Brody in the radio flyer wagon up to the pre-op waiting area. They took us right in, but at this point, Brody wanted to pull the giant wagon with all of his stuff in it by himself. He refused help from me. "Brody do it, Mommy." So I let him. And he pulled the wagon through the waiting area, through the first hall and down six doors to our room. Naturally he loved the attention this stunt got him, and all the nurses saying "Oooh, what a big boy!" and "Look how cute he is!"
At this point it was around 1:30. I thought at some point Brody would remember the purple hospital gown he wears while here, or the rooms, or the "bracelet" (hospital id tag) but he didn't seem to have a negative memory. (He is 35 1/2 inches and 27 1/2 pounds, by the way. Not bad for preemie whose had 9 surgeries).
While waiting, Brody and I played football in the hallway. Everyone was impressed with his throwing ability. Catching not so much. But he was giggling loudly and we even got a few nurses in on the game.
Then they told us about the play room. I think after we got to the play room, and the hour and half we spent in there was probably the best time Brody's had in a few months. There was a giant playhouse, with a real doorbell, and doors and windows that opened and closed. And a train table wiht tracks, and a doll house, and legos and blocks and cars and books and pillow blocks. . . Brody squealed and ran with a smile right to the house. "Mommy! House!" He probably went in and out of that house 25 times, ringing the doorbell each way each time. Amazingly, he remained in a great mood, despite not having eaten for 8 hours.
Around 4:15, I took Brody back to surgery. We cantered back to the OR, and he laughed the whole way. The nurses said I really knew what I was doing, because that made going to the OR a fun experience instead of scary. Practice makes perfect.
The OR was very bright and Brody was getting apprehensive. I told him there would be no owies (at least not while he was awake) but he still resisted the mask, until I broke out the Brody song. Unfortunately I had to sing them with an audience of the surgical team, but no one made fun of my singing voice. They marveled that he calmed right down when I started singing. Well, who doesn't like to hear songs about themselves?
Surgery was about 90 minutes. Here are the findings:
1. I can stop wanting to harm the techs who did the failed cath on Monday. Brody has a tricky area - he has what looks like two tubes: but one is the urethra, and one is just a fake indentation. They were trying to cath the indentation. So the doc fixed that issue right there - he snipped the webbed skin making the two holes, and now there is one, but to make sure the area stays wide while it heals, he also has a plastic stent in his urethra that is acting like a catheter. We'll leave that in for 2 weeks.
2. Brody has two urine tubes. Not a good or a bad thing, but most folks have one. However, this means that he will not grow out of the reflux, and he does need surgery. That surgery to fix the reflux - to basically unkink the garden hose is what the urologist said - will happen in hopefully the next couple of weeks. When I marveled at the swiftness in him scheduling this and the next surgery, he said he was trying to focus on being more of a service oriented professional, since that was what medicine was. Novel idea. So we'll talk to his nurse scheduler on Monday and see what's what.
3. Brody has hypospadea and I'm not sure that is how you spell it. But he will need a subsequent operation, probably in the spring and a skin graft to straighten. The doc called this the "pretty penis" surgery.
4. Better news - neither of these two upcoming surgeries is urgent and neither of these conditions is life threatening.
5. Best news - Urologist reviewed the renal ultrasound. This is what he said: "Ok, so I looked at his ultrasound and the kidney looks fantastic."I think that is just sinking in right now. I was so tired at that point all I could do was smile. But I woke up this morning with an extra level of glad when I remembered that.
6. Bestest best news - none of the things I've talked about will have any lifelong effect on Brody. So we fix them, then we (eventually and hopefully) forget them.
Moment of levity: The doc was talking about Brody's tiny urethra, and tiny urine tubes, and I think jeremy made a comment and the doctor said, "Actually, his penis is pretty long." Jeremy beamed. It's not information I needed to know, or think about, but even the doctor laughed and said "Yeah, that just made dad proud."
We took Brody home last night. He's having a few bladder spasms, and we have meds for that which seem to be working. He seems to be fine - he slept almost 12 hours last night - but riding his bike is out of the question, because it causes "owie owie owie."
As we were walking into the hospital yesterday, I received a call from the hand clinic saying that they were running behind, and so instead of appointments, they were just going to open the clinic at 2pm and see patients first come first serve.
Why, then, did we have to wait 6 weeks for an appointment if it's just going to be a free-for-all?
Sigh.
So I make the decision to ditch the hand clinic and go straight to pre-op. Brody was still in a wonderful mood, despite not having eating since 7am. We checked into the hospital, and I wheeled Brody in the radio flyer wagon up to the pre-op waiting area. They took us right in, but at this point, Brody wanted to pull the giant wagon with all of his stuff in it by himself. He refused help from me. "Brody do it, Mommy." So I let him. And he pulled the wagon through the waiting area, through the first hall and down six doors to our room. Naturally he loved the attention this stunt got him, and all the nurses saying "Oooh, what a big boy!" and "Look how cute he is!"
At this point it was around 1:30. I thought at some point Brody would remember the purple hospital gown he wears while here, or the rooms, or the "bracelet" (hospital id tag) but he didn't seem to have a negative memory. (He is 35 1/2 inches and 27 1/2 pounds, by the way. Not bad for preemie whose had 9 surgeries).
While waiting, Brody and I played football in the hallway. Everyone was impressed with his throwing ability. Catching not so much. But he was giggling loudly and we even got a few nurses in on the game.
Then they told us about the play room. I think after we got to the play room, and the hour and half we spent in there was probably the best time Brody's had in a few months. There was a giant playhouse, with a real doorbell, and doors and windows that opened and closed. And a train table wiht tracks, and a doll house, and legos and blocks and cars and books and pillow blocks. . . Brody squealed and ran with a smile right to the house. "Mommy! House!" He probably went in and out of that house 25 times, ringing the doorbell each way each time. Amazingly, he remained in a great mood, despite not having eaten for 8 hours.
Around 4:15, I took Brody back to surgery. We cantered back to the OR, and he laughed the whole way. The nurses said I really knew what I was doing, because that made going to the OR a fun experience instead of scary. Practice makes perfect.
The OR was very bright and Brody was getting apprehensive. I told him there would be no owies (at least not while he was awake) but he still resisted the mask, until I broke out the Brody song. Unfortunately I had to sing them with an audience of the surgical team, but no one made fun of my singing voice. They marveled that he calmed right down when I started singing. Well, who doesn't like to hear songs about themselves?
Surgery was about 90 minutes. Here are the findings:
1. I can stop wanting to harm the techs who did the failed cath on Monday. Brody has a tricky area - he has what looks like two tubes: but one is the urethra, and one is just a fake indentation. They were trying to cath the indentation. So the doc fixed that issue right there - he snipped the webbed skin making the two holes, and now there is one, but to make sure the area stays wide while it heals, he also has a plastic stent in his urethra that is acting like a catheter. We'll leave that in for 2 weeks.
2. Brody has two urine tubes. Not a good or a bad thing, but most folks have one. However, this means that he will not grow out of the reflux, and he does need surgery. That surgery to fix the reflux - to basically unkink the garden hose is what the urologist said - will happen in hopefully the next couple of weeks. When I marveled at the swiftness in him scheduling this and the next surgery, he said he was trying to focus on being more of a service oriented professional, since that was what medicine was. Novel idea. So we'll talk to his nurse scheduler on Monday and see what's what.
3. Brody has hypospadea and I'm not sure that is how you spell it. But he will need a subsequent operation, probably in the spring and a skin graft to straighten. The doc called this the "pretty penis" surgery.
4. Better news - neither of these two upcoming surgeries is urgent and neither of these conditions is life threatening.
5. Best news - Urologist reviewed the renal ultrasound. This is what he said: "Ok, so I looked at his ultrasound and the kidney looks fantastic."I think that is just sinking in right now. I was so tired at that point all I could do was smile. But I woke up this morning with an extra level of glad when I remembered that.
6. Bestest best news - none of the things I've talked about will have any lifelong effect on Brody. So we fix them, then we (eventually and hopefully) forget them.
Moment of levity: The doc was talking about Brody's tiny urethra, and tiny urine tubes, and I think jeremy made a comment and the doctor said, "Actually, his penis is pretty long." Jeremy beamed. It's not information I needed to know, or think about, but even the doctor laughed and said "Yeah, that just made dad proud."
We took Brody home last night. He's having a few bladder spasms, and we have meds for that which seem to be working. He seems to be fine - he slept almost 12 hours last night - but riding his bike is out of the question, because it causes "owie owie owie."
Thursday, November 6, 2008
Roller coaster
Low: Monday, when the hospital used feeding tubes to try to cathaterize my baby while he screamed. please forgive me
High: Obama winning. Brody is safe and will have health insurance. And a president who knows there is a constitution.
Lower: Brody having surgery for something we hadn't even thought was an issue, a stricture in his urethra. please keep him safe and healthy And getting anxious to hear results of how his one kidney is functioning. please let it be working well
Slightly higher: At least he can have solids until 7am, and clear juice until 1pm on Friday. please don't let him think we are being mean to him
Lowest: Just now, found out 2 year old Dante's neuroblastoma cancer has spread. To his spine, and possibly his bone marrow and there are lesions all over his body, including his head. And there's one treatment (MiBG), and if he doesn't get well from a respiratory infection in his lungs (which could also be cancer) within the next 4 days, then there is no treatment.
please please please
Please.
High: Obama winning. Brody is safe and will have health insurance. And a president who knows there is a constitution.
Lower: Brody having surgery for something we hadn't even thought was an issue, a stricture in his urethra. please keep him safe and healthy And getting anxious to hear results of how his one kidney is functioning. please let it be working well
Slightly higher: At least he can have solids until 7am, and clear juice until 1pm on Friday. please don't let him think we are being mean to him
Lowest: Just now, found out 2 year old Dante's neuroblastoma cancer has spread. To his spine, and possibly his bone marrow and there are lesions all over his body, including his head. And there's one treatment (MiBG), and if he doesn't get well from a respiratory infection in his lungs (which could also be cancer) within the next 4 days, then there is no treatment.
please please please
Please.
The afterglow
Jeremy, Brody and I were eating dinner with the TV on last night, discussing vacation and holiday plans (and not Barack Obama). President-elect Obama was on TV at various points, replaying his speech from Tuesday night.
Brody was happily eating his spaghettios.
Then he interrupts us to say very urgently: Mommy, daddy!
Me: Yes, baby?
Brody: Rockobamama coming!!!
Jeremy: Yup, Barack Obama is coming.
Brody: Yeah, Rockobamama coming
Naturally, this assured us yet again that Brody is, in fact, a genius.
Brody was happily eating his spaghettios.
Then he interrupts us to say very urgently: Mommy, daddy!
Me: Yes, baby?
Brody: Rockobamama coming!!!
Jeremy: Yup, Barack Obama is coming.
Brody: Yeah, Rockobamama coming
Naturally, this assured us yet again that Brody is, in fact, a genius.
Wednesday, November 5, 2008
President-Elect Obama
I argue and write for a living, and I have no words today.
Some photos of reactions from around the world after Senator Obama became President-Elect Obama.
India:
Jerusalem:
Greece:
The Netherlands:
France:
Some photos of reactions from around the world after Senator Obama became President-Elect Obama.
India:
Sydney, Australia:
Jerusalem:
Greece:
The Netherlands:
France:
Monday, November 3, 2008
Vote vote vote!
If you are an American, it is your obligation, duty, honor and privilege to VOTE.
Do so.
I will be at an elementary school precinct, serving as a voter protection watcher for the Colorado Democratic Party. If there are people intimidating voters, or too long of a line, voter suppression, I call the "boiler room."
And then they do something about it.
It's like having all the benefit of insider information with really none of the responsibility.
Do so.
I will be at an elementary school precinct, serving as a voter protection watcher for the Colorado Democratic Party. If there are people intimidating voters, or too long of a line, voter suppression, I call the "boiler room."
And then they do something about it.
It's like having all the benefit of insider information with really none of the responsibility.
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