Looking out over the Forest City I can only imagine that the view from this window at Barbara Bush hospital is going to be amazingly alive with color in just a few short weeks . In the wake of this weekend's rain and rain and more rain our first day of "big boy" chemo is underway. And the day looks gorgeous! There is a smattering of maples out there beginning to show off their bright reds and with the high clouds the western mountains are in clear view.
This morning, we were admitted at 8am and have made ourselves at home in room 640. James' new medi-port has been accessed and is working swimmingly! He's currently being given a big ol' dose of fluid to bloat him up before he begins getting the nasty drugs. The premise is , basically, the drugs go in and he pees out the remnants. So, over the next couple days JT will be peeing in cups so that it all can be tested.
Today's cocktail will be:
1-Vincristine - which JT had every Monday during radiation ~ this drug is what we joked about being "chemo-lite"
2- Lomustine - this will be a pill ~ JT practiced taking pills just yesterday by swallowing citrus-flavored Tic Tacs and did awesome. He was able to swallow three Tic Tacs straight and earned himself some new Legos. I'll admit this again...I'm not above bribery.
3 - Cisplatin - This will be the nasty one. On top of possibly affecting his hearing this will be the one that can give him the classic chemo nausea and will have a profound effect on his immune system in the coming weeks.
But, for now it's lunch time. I'll check in later! Enjoy the (partial) sun!
Love to you all...
dct
Monday, September 29, 2008
Sunday, September 28, 2008
Thank You, One and All...
We'd like to take a moment to give a heartfelt thanks to everyone who walked Saturday morning in support of the Maine Children's Cancer Program. Three teams, in particular, had very close ties to James - JT's Trekkers (Portland), Diversified Business Communications (Portland) and JT's B-ham Trekkers (Brunswick). Thank you very, very much for all of your contributions, fundraising and involvement. Cliche, I know, but without your help many, many things might not be possible.
As of this morning there was just under $50,000 raised online. "Our" three teams accounted for just over $7500 of that total (online monies only). Calculated out...we accounted for 15% of the total raised! Wow. You guys are great.
Without each of your help the "little things" would be much harder to support and keep going. And it's the little things that help make MCCP such a special place. Whether it be the video games, stickers or a small toys, each and every little thing, hopefully, helps the medicine go down a little easier, the needle pricks sting a little less and the long hours of IV therapy go a little faster.
A thousand thank-yous to each and everyone involved yesterday. You are all amazing!
I hope that you all enjoy the last hours of the weekend!
Love,
dct, jet, jpt & jwt
As of this morning there was just under $50,000 raised online. "Our" three teams accounted for just over $7500 of that total (online monies only). Calculated out...we accounted for 15% of the total raised! Wow. You guys are great.
Without each of your help the "little things" would be much harder to support and keep going. And it's the little things that help make MCCP such a special place. Whether it be the video games, stickers or a small toys, each and every little thing, hopefully, helps the medicine go down a little easier, the needle pricks sting a little less and the long hours of IV therapy go a little faster.
A thousand thank-yous to each and everyone involved yesterday. You are all amazing!
I hope that you all enjoy the last hours of the weekend!
Love,
dct, jet, jpt & jwt
Friday, September 26, 2008
The MCCP Walk...
....is a rain or shine event. According to many in the "business" we're supposed to get a "spell of weather".....Clearly, use your best judgement in deciding to walk. According to MCCP they will post any cancellation info on their website.
You can check the status on the walk page...here: https://fundraising.mmc.org/NETCOMMUNITY/SSLPage.aspx?&pid=246&srcid=183
You can check the status on the walk page...here: https://fundraising.mmc.org/NETCOMMUNITY/SSLPage.aspx?&pid=246&srcid=183
Monday, September 22, 2008
MediPort - Act II - Let's Try this Again
Ever feel like you're driving in circles? "Look kids, Parliament, Big Ben..." No sooner did we drive away dizzied by the new parking garage at Maine Med, we find ourselves, less than 48 hours later, going back around and around the parking garage up to Level 7 for the entrance to Day Surgery to get James a new port.
A couple of hours and a bit of Versed later, and James had to put the DS down (Gasp!) because the medicine's made him too loopy to be effective at keeping SuperMario alive. A little silly gas in the mask, and J was out. The kind Dr. Hartley took out the old port on J's left side, cleaned things up and put a shiny new one in on J's right side. He's got bandages on both sides of his upper chest and in the hand they used for the IV, so he was the walking wounded leaving the hospital late this afternoon.
Now at home, as he sits and watches Caillou (his little bald fictional twin), he's had his daily dose of McDonald's, and is resting comfortably in the big red chair. One more dose of Tylenol for the sleepy road ahead & it's off to bed for James. Tomorrow's picture day at school! Don't know if simply writing "First Grade" on the back of this picture will really sum it up years from now.
Good night! - Jenn & the boys
A couple of hours and a bit of Versed later, and James had to put the DS down (Gasp!) because the medicine's made him too loopy to be effective at keeping SuperMario alive. A little silly gas in the mask, and J was out. The kind Dr. Hartley took out the old port on J's left side, cleaned things up and put a shiny new one in on J's right side. He's got bandages on both sides of his upper chest and in the hand they used for the IV, so he was the walking wounded leaving the hospital late this afternoon.
Now at home, as he sits and watches Caillou (his little bald fictional twin), he's had his daily dose of McDonald's, and is resting comfortably in the big red chair. One more dose of Tylenol for the sleepy road ahead & it's off to bed for James. Tomorrow's picture day at school! Don't know if simply writing "First Grade" on the back of this picture will really sum it up years from now.
Good night! - Jenn & the boys
Sunday, September 21, 2008
Hey, we got a break!
JT was released from the hospital yesterday afternoon when the blood work came back negative for any junk (again, another technical term). Still not sure what spiked the fever.
From what we've been told JT is scheduled for surgery at 1pm on Monday to get some new plumbing. At that time they'll take out the cruddy port and give him a sleek new one. Fingers crossed that this is the last one we'll be replacing.
Enjoy your Sunday!
dct
From what we've been told JT is scheduled for surgery at 1pm on Monday to get some new plumbing. At that time they'll take out the cruddy port and give him a sleek new one. Fingers crossed that this is the last one we'll be replacing.
Enjoy your Sunday!
dct
Friday, September 19, 2008
In for the weekend....
JT was admitted to Barbara Bush last night after not having a great experience with his Vancomycin. Earlier today there was talk that JT would go in for surgery to remove his clogged port, then attack his infection with antibiotics and replace the port early next week.
Since I arrived here the plan has changed. They are going keep JT in the big house over the weekend and hit this infection with more Vanco. Then on Monday, early in the afternoon, he's going to have his port replaced with a new one.
After that are we free to flee? Your guess is as good as mine...time will tell.
Take care and enjoy your weekend!!
dct
p.s. DH, thanks for the gifts. Ginormous hit.
Since I arrived here the plan has changed. They are going keep JT in the big house over the weekend and hit this infection with more Vanco. Then on Monday, early in the afternoon, he's going to have his port replaced with a new one.
After that are we free to flee? Your guess is as good as mine...time will tell.
Take care and enjoy your weekend!!
dct
p.s. DH, thanks for the gifts. Ginormous hit.
Thursday, September 18, 2008
Strike three....
Jenn took JT down to the clinic today where they tried again to get JT's port unclogged. But to no avail. They tried changing the needle again and gave JT more doses of Urokinase. Still nothing. So they took his needle out and sent him packing. The next step may be surgery to replace his clogged medi-port. All we're looking for is a break in the action prior to his full chemotherapy later this month.....This stuff just can't be easy!
To add insult to injury when JT got home tonight he felt warm and wanted to lie down. After taking his temperature a few times we realized that he was running a true temp. After a call back from one of his oncologists it was decided that JT should go to the hospital to have tests. So we applied Emla to his port area to numb him up and off Jenn and JT went to the hotel on the hill.
The sad thing is that the way things have been playing out over the last few days there's a great chance that his port isn't going to work properly when the access him to get blood cultures. This will mean an IV stick in the arm. The poor fella just can't get his own break. Let's just cross our fingers.
Probably sadder than that has been my own attitude lately. I've noticed that I've become more cynical and sarcastic and that these posts have probably, at times, reflected this as I try and keep everyone informed. Hopefully, by me realizing this I can make a more positive shift in my attitude. As Jenn has repeated to me I know that things could be a lot worse - there could be more tumor, James could have had a tumor that couldn't be operated on and so on. But lately, as the school year begun and there was no more radiation and a break in chemo I hoped and prayed that JT would have some normalcy. If only just a little bit. As that hasn't really materialized to my own satisfaction I have to learn to embrace the little things a bit more. And I'm trying. I really am.
Hopefully, the next post will have some better news. Until then, take care of each other and I'll be here looking for the good things.
Love to you all,
dct
To add insult to injury when JT got home tonight he felt warm and wanted to lie down. After taking his temperature a few times we realized that he was running a true temp. After a call back from one of his oncologists it was decided that JT should go to the hospital to have tests. So we applied Emla to his port area to numb him up and off Jenn and JT went to the hotel on the hill.
The sad thing is that the way things have been playing out over the last few days there's a great chance that his port isn't going to work properly when the access him to get blood cultures. This will mean an IV stick in the arm. The poor fella just can't get his own break. Let's just cross our fingers.
Probably sadder than that has been my own attitude lately. I've noticed that I've become more cynical and sarcastic and that these posts have probably, at times, reflected this as I try and keep everyone informed. Hopefully, by me realizing this I can make a more positive shift in my attitude. As Jenn has repeated to me I know that things could be a lot worse - there could be more tumor, James could have had a tumor that couldn't be operated on and so on. But lately, as the school year begun and there was no more radiation and a break in chemo I hoped and prayed that JT would have some normalcy. If only just a little bit. As that hasn't really materialized to my own satisfaction I have to learn to embrace the little things a bit more. And I'm trying. I really am.
Hopefully, the next post will have some better news. Until then, take care of each other and I'll be here looking for the good things.
Love to you all,
dct
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