JT went down to Maine Children's Cancer Clinic this morning for another attempt to unclog his plumbing. No dice. After two failed attempts at letting the Urokinase sit in there and eat the junk we were sent packing.
He'll give it another try tomorrow at 11am. I believe that I've mentioned this before...but the process is pretty basic. Inject meds into port, wait an hour and try to suck them out.
The big thing for JT is that he just gets bored waiting. Although, today we played plenty of Cars on the XBox360 and Zelda on his Nintendo DS. As a bonus, his pal Isaac was at clinic so they got to hang out...if only for a few minutes.
Hopefully, better news tomorrow.....now....where did I put that DS?
Hope all is well with y'all,
dct
Wednesday, September 17, 2008
Tuesday, September 16, 2008
Things can't just be easy....
This morning found JT up at Maine Med for his three month/pre-chemo MRI. JT was in good spirits until it was time to have his medi-port accessed. Despite Emla numbing cream he’s still extremely sensitive about the area and hates the needle (not that I can blame him). In any event, the needle went in while his mom, a nurse and I restrained him. It was shortly thereafter that we realized that flushes were going in (as they should) but there wasn’t a return. Not so good. But “no return” wasn’t a reason to delay JT’s inevitable date with the mega magnet. So, after a little Propofol JT was off to la-la land and went to get his head examined.
Meanwhile, Jennifer and I grabbed a pager – mind you the pagers are exactly like the ones you’d get waiting for your table at the Olive Garden – and went up to the café to grab a little breakfast. While returning to MRI we ran into MCCP’s Nurse Practitioner and described JT’s lack of return. Knowing that JT needs to go to the Clinic next Monday for blood work (read: they need to pull blood out of the port!) it was rather critical that the damned thing work. So, the NP, Chris, made sure that JT’s needle stayed in post-MRI and had us moved up to a room at Barbara Bush Hospital where they could try and work out what was clogging up the works.
While there are, I’m certain, many different reasons for a port to fail to give a return there are a few reasons for “no return” that I’ve heard more times than not. To explain even one adequately I need to briefly describe (with apologies to any healthcare professional reading this) the basic workings of his medi-port. The medi-port tube (or catheter) is woven into one of JT’s veins on his upper chest. When a needle goes into the access point, his medications travel down the tube and into his blood stream. The conventional wisdom is that when JT is accessed you press the plunger of the syringe the meds travel into him and if you were to pull the plunger out blood would travel up the tube, out the access point and you would see it enter the syringe. The act of pulling on the syringe plunger would suck out or “return” blood via the port. Thus, the term “blood return”.
Now, why wouldn’t you be able to get something simple as a return every time JT’s accessed? Good question. One theory of what’s going on is called tubesuckingthewallistis. Okay, I made that up. But it pretty much describes the phenomenon. Imagine putting a straw into your lemonade. It works well until you put the straw so far down that it rests squarely on the bottom of the glass. Then you can’t suck up lemonade. Imagine JT’s catheter doing the same exact thing. Except the end of his catheter is hitting up against the structure wall of where it ends.
Hold on….Nurses entering the room…..
Fast forward two hours….
JT and I just got back from Fluoroscopy. Now that, my friends, is cool. Real-time x-ray images of moving structures in the body. JT just laid there while the doctor injected contrasting dye into his medi-port. I got to sit there and see his port working right on TV. Wicked cool. What they found was JT has a little fibrin sheath (affectionately known as a fibrin “booger”) at the end of his medi-port catheter. In essence, a little strand of a clot hanging off the end of the tube. As junk is injected through the port it breezes right by the booger. But as soon as one tries to pull fluid back up the catheter, the booger sucks into the end of the catheter and blocks it up. I suppose my previous example should have been “pulpy” lemonade. Yep, there you have it….James has pulp stuck in his catheter.
There are tricks to beating this and so far the one dose of booger eating medicine (Urokinase) hasn’t worked. Tomorrow we’ll head to Maine Children’s and try again (and maybe again).
Talk to you later,
dct
Meanwhile, Jennifer and I grabbed a pager – mind you the pagers are exactly like the ones you’d get waiting for your table at the Olive Garden – and went up to the café to grab a little breakfast. While returning to MRI we ran into MCCP’s Nurse Practitioner and described JT’s lack of return. Knowing that JT needs to go to the Clinic next Monday for blood work (read: they need to pull blood out of the port!) it was rather critical that the damned thing work. So, the NP, Chris, made sure that JT’s needle stayed in post-MRI and had us moved up to a room at Barbara Bush Hospital where they could try and work out what was clogging up the works.
While there are, I’m certain, many different reasons for a port to fail to give a return there are a few reasons for “no return” that I’ve heard more times than not. To explain even one adequately I need to briefly describe (with apologies to any healthcare professional reading this) the basic workings of his medi-port. The medi-port tube (or catheter) is woven into one of JT’s veins on his upper chest. When a needle goes into the access point, his medications travel down the tube and into his blood stream. The conventional wisdom is that when JT is accessed you press the plunger of the syringe the meds travel into him and if you were to pull the plunger out blood would travel up the tube, out the access point and you would see it enter the syringe. The act of pulling on the syringe plunger would suck out or “return” blood via the port. Thus, the term “blood return”.
Now, why wouldn’t you be able to get something simple as a return every time JT’s accessed? Good question. One theory of what’s going on is called tubesuckingthewallistis. Okay, I made that up. But it pretty much describes the phenomenon. Imagine putting a straw into your lemonade. It works well until you put the straw so far down that it rests squarely on the bottom of the glass. Then you can’t suck up lemonade. Imagine JT’s catheter doing the same exact thing. Except the end of his catheter is hitting up against the structure wall of where it ends.
Hold on….Nurses entering the room…..
Fast forward two hours….
JT and I just got back from Fluoroscopy. Now that, my friends, is cool. Real-time x-ray images of moving structures in the body. JT just laid there while the doctor injected contrasting dye into his medi-port. I got to sit there and see his port working right on TV. Wicked cool. What they found was JT has a little fibrin sheath (affectionately known as a fibrin “booger”) at the end of his medi-port catheter. In essence, a little strand of a clot hanging off the end of the tube. As junk is injected through the port it breezes right by the booger. But as soon as one tries to pull fluid back up the catheter, the booger sucks into the end of the catheter and blocks it up. I suppose my previous example should have been “pulpy” lemonade. Yep, there you have it….James has pulp stuck in his catheter.
There are tricks to beating this and so far the one dose of booger eating medicine (Urokinase) hasn’t worked. Tomorrow we’ll head to Maine Children’s and try again (and maybe again).
Talk to you later,
dct
Friday, September 12, 2008
Just to clarify....
I'd just like to expand on a line from my post yesterday.....There have been in excess of $90 thousand charged by medical professionals to the insurance company thus far. We don't owe that. We haven't seen any bills from charges not covered....Yet. Sorry if there was any confusion there....
dct
dct
Thursday, September 11, 2008
Needles and Eyeballs.....
This week has been uneventful and eventful at the same time - if that makes sense. JT has begun to settle down into the routine of the school year...Up early, bus stop and the such. So far, so good. And that's the uneventful part of the week.
As for the eventful happenings, well, there have been a few. We begun the week with me taking JT to wonderful potluck benefit put on by my co-workers at DBC. To everyone who stepped up and cooked and donated I want to thank-you so very much. The food was amazing and although JT was pretty shy I hope you each got the opportunity to see the little guy. You are all wonderful people and your kindness and generosity is truly inspiring. Thank you again and again and again.
On Wednesday morning, James hit a milestone. He had run the month long course of antibiotics and was now able to get rid of his IV 'robot'! For that he was very happy. What he wasn't too happy about was the fact that he was also going to lose his access needle. What's the big deal you ask? Well, to remove said needle the nurse was going to have to remove the tegaderm adhesive that covered the access area. Imagine pulling off a 4" by 6" piece of thin, clear contact paper off your chest - do you sorta understand his anxiety now? Anyhow, the little guy didn't like it one bit, but it all came off and now he just has a regular band-aid (Spiderman, of course) on his chest. For now, he's free of tubes and needles and can be six years old for a while. Something he was able to do at his school BBQ that same night as he tromped around the playground with his pal Tate. We just hope and pray that these meds worked and that we aren't faced with yet another infection in the coming weeks.
Today James had his follow up appointment with the ophthalmologist, Dr. Jeffery Berman, who discovered JT's swollen optic nerves back in June that set us off on this wild ride. Dr. Berman looked over James, and told us that the nerves were flat and that his eyes do not require any patching, corrective lenses or surgery! Great news. But then again, after six hours of brain surgery, countless days/hours in the hospital and over $90K in medical bills those damn nerves better be 'flat.' Seriously though, it was really great news to hear.
Not quite sure what this weekend will bring but I'm pretty sure that we'll be laying sort of low. Next week JT is back at the hospital on Tuesday for a routine MRI to see how we're doing post-radiation and pre-full chemo. I'm not positive that anytime there's an MRI one could call it 'routine' but the boy has done his 3,000 miles and it's time to take him in for an oil change. After what he's been through since his last MRI, we'd be really surprised to see any tumor regrowth, but c'mon, we'd be naive to ignore the simple fact that another tumor really could be there. It's a fear that we have to live with every time he slides into the big magnet machine. Not to squash the mood here, but unlike some other cancers there isn't a 'cured' phase for medulloblastoma. As the oncologist said months ago, as JT grows and he is free of tumors you move into a more comfortable emotional place. JT becomes a survivor.
Please play safe, take care of each other and enjoy the weekend. We'll be checking in with you shortly. Love to you all,
dct
As for the eventful happenings, well, there have been a few. We begun the week with me taking JT to wonderful potluck benefit put on by my co-workers at DBC. To everyone who stepped up and cooked and donated I want to thank-you so very much. The food was amazing and although JT was pretty shy I hope you each got the opportunity to see the little guy. You are all wonderful people and your kindness and generosity is truly inspiring. Thank you again and again and again.
On Wednesday morning, James hit a milestone. He had run the month long course of antibiotics and was now able to get rid of his IV 'robot'! For that he was very happy. What he wasn't too happy about was the fact that he was also going to lose his access needle. What's the big deal you ask? Well, to remove said needle the nurse was going to have to remove the tegaderm adhesive that covered the access area. Imagine pulling off a 4" by 6" piece of thin, clear contact paper off your chest - do you sorta understand his anxiety now? Anyhow, the little guy didn't like it one bit, but it all came off and now he just has a regular band-aid (Spiderman, of course) on his chest. For now, he's free of tubes and needles and can be six years old for a while. Something he was able to do at his school BBQ that same night as he tromped around the playground with his pal Tate. We just hope and pray that these meds worked and that we aren't faced with yet another infection in the coming weeks.
Today James had his follow up appointment with the ophthalmologist, Dr. Jeffery Berman, who discovered JT's swollen optic nerves back in June that set us off on this wild ride. Dr. Berman looked over James, and told us that the nerves were flat and that his eyes do not require any patching, corrective lenses or surgery! Great news. But then again, after six hours of brain surgery, countless days/hours in the hospital and over $90K in medical bills those damn nerves better be 'flat.' Seriously though, it was really great news to hear.
Not quite sure what this weekend will bring but I'm pretty sure that we'll be laying sort of low. Next week JT is back at the hospital on Tuesday for a routine MRI to see how we're doing post-radiation and pre-full chemo. I'm not positive that anytime there's an MRI one could call it 'routine' but the boy has done his 3,000 miles and it's time to take him in for an oil change. After what he's been through since his last MRI, we'd be really surprised to see any tumor regrowth, but c'mon, we'd be naive to ignore the simple fact that another tumor really could be there. It's a fear that we have to live with every time he slides into the big magnet machine. Not to squash the mood here, but unlike some other cancers there isn't a 'cured' phase for medulloblastoma. As the oncologist said months ago, as JT grows and he is free of tumors you move into a more comfortable emotional place. JT becomes a survivor.
Please play safe, take care of each other and enjoy the weekend. We'll be checking in with you shortly. Love to you all,
dct
Thursday, September 4, 2008
First Day of First Grade
Despite worries about 1) taking his IV robot to school and 2) whether Tate would sit with him on the bus James began the first grade today (complete with temporary tattoos on each side of his head!) If I don't say so myself, quite an amazing task considering that he ended kindergarten with brain surgery.
With apologies to the LaSala’s (the bus stop is in front of their house), this morning Vince D and I split duties (okay, he did more than me!) in organizing a little first-day-bus-stop Munchkin Social. Vin brought the card table, coffee and mini muffins while I added the Munchkins and orange juice. By 7:55am most kids were munching and mingling while adults snapped pictures and talked about the last remnants of summer (and high-fived about the start of school!) We even had a few new kindergartners join our party for a "dry run" walk to the bus stop. They'll be joining us on the corner full-time on Monday.
And then at 8:10 Marcia turned the corner and brought ole’ #43 down Kenilworth to the screams of “Bus!!!” Kids jockeyed for position in the bus line while parents got their last kisses in. Then it was “all aboard.” Another school year was officially underway. It's gonna be a long year for the little guy. But he's got a great team behind him at Hall and hopefully, even with periodic hospital stays and chemo visits, he'll stay right on track.
With apologies to the LaSala’s (the bus stop is in front of their house), this morning Vince D and I split duties (okay, he did more than me!) in organizing a little first-day-bus-stop Munchkin Social. Vin brought the card table, coffee and mini muffins while I added the Munchkins and orange juice. By 7:55am most kids were munching and mingling while adults snapped pictures and talked about the last remnants of summer (and high-fived about the start of school!) We even had a few new kindergartners join our party for a "dry run" walk to the bus stop. They'll be joining us on the corner full-time on Monday.
And then at 8:10 Marcia turned the corner and brought ole’ #43 down Kenilworth to the screams of “Bus!!!” Kids jockeyed for position in the bus line while parents got their last kisses in. Then it was “all aboard.” Another school year was officially underway. It's gonna be a long year for the little guy. But he's got a great team behind him at Hall and hopefully, even with periodic hospital stays and chemo visits, he'll stay right on track.
Here are a few of the First Day photos.....
JT with his brother and "Robot"
Enough Already! Put that camera AWAY!
Bus Riders, KGartner Kids and Little Sibs
Ready for School!
JT and Ada are off to school!
Tuesday, September 2, 2008
Checking In...
Hello All,
Pretty quiet here in Taylorville. We're still a bit in shock that we don't have to scurry off to radiation every morning - but we're getting used to it. Now that James can relax and eat a breakfast in the morning we're trying to get back in some sort of routine before the first day of first grade this Thursday.
This past Friday the school nurse came by the house and we had a wonderful chat about what James has gone through and what his anticipated needs will be for the school year. Just this evening we all went over to Hall School to meet JT's teacher, Mrs. Dowdy, and to see the classroom. James went this evening worried about, of all things, first grade homework. He was assured by Mrs. Dowdy that she'd take it easy on them and not to worry. All in all, JT walked out of the school pretty excited about the school year. Tomorrow Jenn and I will meet with the principal, nurse and teacher for one final chat before he climbs back aboard Marsha's #43 at 8:08am Thursday.
Some have asked about JT's IV infusion pump so I thought I'd give you the skinny on that thingy. JT just started week four of a four week infusion of Nafcillin. He gets this infusion via a little pump that he carries around in a little shoulder sling. It is affectionately known as his Robot (sorry to repeat pics here...)
Anyhow...this little bugger fires off (medical term there) a dose of meds over the course of an hour every six hours. Pretty nifty little thing. But I'll be happy when we have to give it back. Or maybe I could sell it...I see there's one on eBay for $900.....
Another downside of not going to radiation is that JT's huber needle changes can't be done while he's under anesthesia. Oh, joy. Today was JT's first needle change by the visiting nurse. I'll be honest, I think that I had as much (if not more) anxiety as James about doing this. The nurse arrived at 11am and within just a few minutes had the old dressing off and the needle out. James was amazingly cool during this process given that when it comes to taking any dressing off in his port area he's very - I mean very - protective. And, frankly, I don't blame him. Who in their right mind would want a 6 by 6 inch adhesive pulled off their upper chest. I then applied the numbing Emla cream and Glad Press 'n Seal Wrap. Yes, readers Glad Press 'n Seal is not only good to preserve your Labor Day BBQ leftovers, it's recommended for use in keeping numbing cream in its rightful place.
Pretty quiet here in Taylorville. We're still a bit in shock that we don't have to scurry off to radiation every morning - but we're getting used to it. Now that James can relax and eat a breakfast in the morning we're trying to get back in some sort of routine before the first day of first grade this Thursday.
This past Friday the school nurse came by the house and we had a wonderful chat about what James has gone through and what his anticipated needs will be for the school year. Just this evening we all went over to Hall School to meet JT's teacher, Mrs. Dowdy, and to see the classroom. James went this evening worried about, of all things, first grade homework. He was assured by Mrs. Dowdy that she'd take it easy on them and not to worry. All in all, JT walked out of the school pretty excited about the school year. Tomorrow Jenn and I will meet with the principal, nurse and teacher for one final chat before he climbs back aboard Marsha's #43 at 8:08am Thursday.
Some have asked about JT's IV infusion pump so I thought I'd give you the skinny on that thingy. JT just started week four of a four week infusion of Nafcillin. He gets this infusion via a little pump that he carries around in a little shoulder sling. It is affectionately known as his Robot (sorry to repeat pics here...)
Anyhow...this little bugger fires off (medical term there) a dose of meds over the course of an hour every six hours. Pretty nifty little thing. But I'll be happy when we have to give it back. Or maybe I could sell it...I see there's one on eBay for $900.....
Another downside of not going to radiation is that JT's huber needle changes can't be done while he's under anesthesia. Oh, joy. Today was JT's first needle change by the visiting nurse. I'll be honest, I think that I had as much (if not more) anxiety as James about doing this. The nurse arrived at 11am and within just a few minutes had the old dressing off and the needle out. James was amazingly cool during this process given that when it comes to taking any dressing off in his port area he's very - I mean very - protective. And, frankly, I don't blame him. Who in their right mind would want a 6 by 6 inch adhesive pulled off their upper chest. I then applied the numbing Emla cream and Glad Press 'n Seal Wrap. Yes, readers Glad Press 'n Seal is not only good to preserve your Labor Day BBQ leftovers, it's recommended for use in keeping numbing cream in its rightful place.
After about an hour the nurse returned and it was...cue the music....needle time. I had all the supplies lined up and ready to go. Had we been able to just stick the needle in I think we'd have been golden. JT was watching Star Wars - Return of the Jedi and was zoned right out... But there was one hitch...his port area needed to be cleaned of Emla and then scrubbed with a sterilizing agent for, get this, a minute. James' anxiety festered, grew and reared its ugly head at about the 45th second. The poor bugger broke down and began a full -on tantrum. Luckily, the nurse was good enough to see that her window of opportunity was rapidly closing and wasted no time in putting the needle in as fast as she could. With the needle in JT's port, he finally began to calm down.
Then....the needle didn't work. Seems that during the tantrum's movement the needle missed its mark. Now mind you, I'd basically sold what little soul I have left for this to go smoothly. And in this brief moment (that seemed to last forever) it wasn't going very smooth at all. As I turned to get another needle out of the CVS that is my dining room hutch - convinced that we'd have to stick the guy again - the nurse called out "it's good!" Seems that after JT made some more movement the needle settled in and we got a good blood return. Frankly, it's not the best stick I've seen. It has a little list to port (no pun intended). But, three things - he was having a tantrum not sedated, I couldn't do better and it works. So, I'll just shut up.
After few quiet moments, tissues, hugs and kisses and the nurse left, Darth Vadar had been beaten and all was back to being cool in JT's world.
We hope that you all had a great Labor Day weekend. Thanks and be safe out there. I'll try to check in in the next few days....
Love to you all,
dct
P.S. Lauren...Keep up the good fight. JT's pullin' for ya. It's not a sprint...it's a marathon. And it's okay to grab some water from the folks handing it out. Best of luck...
Monday, August 25, 2008
Smile....
Here are just a few snapshots showing JT and friends ....
One of Dad's crazy looking breakfasts
(Gotta be creative when the patient doesn't want to eat!)
When they aren't trying to kill each other - they really do like each other.
Ode to the Sox
Clearing Fort Popham of all Battle Droids.
Ice cream with buddies.
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