Home again...

....home again, jiggidy jig. We're back home! The crew up at BBCH really pushed hard to get James his meds posthaste and we were allowed to check out of the inn earlier this evening. While James is quite tired he handled all of the drugs, questions and interruptions like a champ. One of the big questions I had in the back of my mind going into this week was how he'd react to the new chemo drug - cyclophosphamide. Would he be allergic? Well, he's not. He took two rounds just fine!

I've said this before but I think that it bears repeating again. The crew up on pediatric inpatient floor deserves all the praise that could possibly be given. And then a little more. Inevitably, there are going to be kids and families spending their holiday up on the west end and it blows my mind how these fine folks, selflessly, make each kid feel as though they were king or queen of the world. On Christmas morning while I'll be lucky enough to wake up at home and opening presents in the warmth and comfort of my own living room, my thoughts will be with all the doctors, nurses, kids and families that will be up in the big house celebrating the holiday. I raise my nog to you all.

Okay, now about our busy day....On top of his meds, playing ball in the atrium and drop-ins by some friends and family James was visited by US Navy officers from BNAS, a triathlete in training for London 2012 and a number of ME State Troopers bearing gifts. Of it all, James was definitely most impressed with the fact that the Troopers all had both guns and handcuffs inside the hospital. And, of course, their jet black German Shepard K9 - aptly named, Chase - was pretty cool.

As promised here are a few more shots from Santa's special visit to room 636...

If I don't type again before the Santa's coursers fly, enjoy your holiday everyone!
'To the top of the porch! To the top of the wall!
Now dash away! Dash away! Dash away all!'
Love to you all....
dct

Christmas Chemo Time!

This week the Taylors find ourselves in back in Barbara Bush Children's Hospital (the infamous room 636) for James' last inpatient chemo treatment of 2008. JT checked into the big house at about 9am today and we hope to be heading back home on Christmas Eve Day.

This evening, little did James know but Santa got clearance to use the hospital's helicopter pad to pay a special visit. He waved to many kids but tonight - by special invitation- Santa's only stop was room 636 to see James and Jack. He brought only two presents with him. One for James and one for Jack. James can't figure out how the man in red knew he was even here. All of James' letters came from our home address! When I asked him if, maybe, he secretly wished that Santa would come visit him in the hospital he said "Yes". Needless to say, after a day of being sort of "down" because the playroom is closed (read: No xBox 360/Legos Star Wars game) James is still in shock....more pictures later....The beauty of this one is how Jack is oblivious to Santa's presence once his present is opened.

Only two more shopping days left! I better get started, eh?!?
dct

Snowy Sunday....

So, the boys are resting (JT is getting very fatigued lately) and Old Man Winter is bearing down on us for the third time in under two weeks. I love the new blanket of snow because it covers all the leaves that I didn't have time to rake! But, damn, don't I hate cleaning up after the storms. I'm pretty sure that we can safely assume that we're in for a white Christmas here in Portland.

Anyhow, I'm hanging out flipping through iTunes and photos and figured that I'd post a few random shots for no other good reason than because I can. So here you are.

Hope you all are safe, warm and well.

dct

Not unlike a manager's line up card. Just keeping it all straight, at times, can be mindboggling.

Dinner's "appetizers". Thanks to the medication Gods JT takes everything well.

...and so it does.

For whatever reason a few years ago I began sawing off a little wafer of our Christmas trees. Not sure if it's the recession hitting our little house or just my poor tree selection abilities - but the trunk diameter is on disturbingly downward path. Gonna have to fix that in '09.

Happy Holidays

Hey there folks....

The Taylors are doing well and getting ready for Christmas. James is holding steady. We've noticed that lately he's been becoming more and more fatigued. I suspect that his treatments, all the season's excitement and a nice coating of snow to play in is catching up with him. So, we watch him carefully and are trying to get him to bed early and take naps when he wants.

I just want to take a moment to thank you all for your lovely cards, calls and emails. It's wonderful to know that we have such amazing family, friends and co-workers. Each and everyone of you has helped us cope with a pretty turbulent 2008. I raise my glass to each of you and toast to a happy, healthy and healing 2009.

I promise more of an update (with photos) in the very,very near future. James goes into the hospital on Monday (12/22) and is slated for discharge Christmas Eve. This particular chemo cycle is only four weeks so we'll find ourselves back in January. While more of a break away would be nice we're comforted in the fact that the middle of January will have two milestones. First is that JT will eclipse the half way point in his total treatments (radiation and chemo). The second is that JT will be done the first main cycle of chemo treatments - or better put he'll be 1/3 of the way done with chemo!

For now though we'll concentrate on the short term goals of getting into the hospital, getting out of the hospital and watching for Rudolph's red nose!

Take care and love to you all.

dct

2 Down, 7 To Go

So while Don takes a break tonight (and yes for the past month too) from the blog, I'll fill you in on the last week. James had round 2 of chemo on Monday, Nov. 10th into Tuesday the 11th. No major differences from the last go around except that the chemo started 4 hours earlier this time, which meant James got to sleep just a wee bit more overnight, and that he got to play more Star Wars Legos on the XBox.

No major differences also means...so far...no puking. Mom & Dad & the nurses are thrilled.

Speaking of that, I'll go back just a bit and cover the last month briefly. James handled the chemo like a champ. There was no explicitly chemo-related puking...always good, especially since there can be a delayed nausea effect with 1 of the 3 drugs he received. His blood counts stayed up high enough on all levels to keep us out of the clinic for the 3 week break in between chemo rounds. Also, knock on wood, no infections. So he's been going to school, keeping his OT & PT appointments and trying to keep busy with some of the normal busy life stuff of a 6 year old.

There was apple-picking, scarecrow-making, leaf-raking, playing with friends, Halloween, and a cousin's birthday party. Of course, he was Darth Vader for Halloween (thank you DeeDee), and collected his fair share of candy which he has unknowingly shared with his mother.

James is thrilled that one of his favorite nurses, Kristen, gave him an early Christmas present. Her kids had outgrown them, so James is now the happy inheritor of over 1,500 Pokemon cards. (Ada, Tate & Bella...we've told him to share!) "It's like Christmas for me today," he said. "Remember that on Dec. 25th," I thought to myself as he's also been busy making up "wish lists" out of the numerous unsolicited toy catalogs that seem to be flowing into this house daily.

James went to school for most of the remainder of the week, but a phone call came from the school nurse Friday after lunch. Turns out all the chemo meds & side effects were not his biggest problem this week. The kid can beat all that...apparently, it's a double ear infection he couldn't escape this week! Throw another medicine into the mix; what's one more, right?!

Truly, he's been a trooper through all of it so far. There are things he definitely does not like, but he gets through it in his own ways and then moves on to the next thing a 6 year old boy might care about.

Thank you to all who have continued to ask about how James is doing, and those of you who have kept him and us in your thoughts and prayers. I know it's still almost a couple of weeks away, but we realize we have so much to be thankful for this Thanksgiving, and will have you all in our thoughts as well. - Jenn

Sorry for the Silence

I know, I know.....it has been awhile. Just so you know everything is cool with JT. He's doing very well - except we'd like him to eat more. His blood counts are good. Thank you everyone for asking.

Dad's just a slacker. Everyday life has sort of gotten in the way. I'll be certain to post an update very soon! Hang tight!

dct

Snap Shots....

Here are a few pictures from today and one from yesterday...

Pill swallowing practice. He did amazing.

Lego building just after admitting.

Needle accessed in his new medi-port. Ready for fluids!

Nintendo DS coma.

Here comes a chemo drug - Vincristine.

Warning.

Update: Meds tonight...

JT's chemotherapy will begin in earnest tonight. He's currently still getting IV liquids to get his bladder filled to the brim. At 4pm he'll be taking four pills of Lomustine followed by more IV liquids mixed with some anti-nausea meds. At 7pm he gets the Vincristine and a six-hour Cisplatin IV will begin.

Over night he'll be awoken every few hours to pee.

I'll check in with you later!
dct

Big Boy Chemo - Day One

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

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

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

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

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

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.

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

No Dice....

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

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

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

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

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.

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!

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.

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...

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.

Phase II - Complete!!

It seem as though it was just yesterday we walked into RadCu for the very first time. Today was the 31st - and last - day of radiation for James! The past six weeks - like most summers - has been nothing short of a blur. Although we are very, very happy that JT will not have any more treatments, I think I speak for all of us when I say that there is a part of us which is sad that tomorrow we won't be making the trek to the basement and seeing all the friends we've made over the last two months.

I'd like to list, individually, each one of you who has cared for JT during the treatments but for fear that I'd leave someone out, I won't. You all know who you are - nurses, anesthesiologists & the radiation therapy group, and a special visitor from MRI . From the bottom of our hearts, we thank you for all you did and for all you do for everyone who walks or rolls through your automated doors! For anyone out there who happens to visit the kind folks in the basement off of Bramhall Street, trust me, you are in the best of hands.

That said, today's mood was a little lighter than the normal therapy days. On JT's last day he was presented with a new light saber, Darth Vader mask and costume, Star Wars Legos, 2 balloons and chocolate munchkins.....Thank you so very much.....Below are a few candid shots of the morning.

So, for now we'll wrap up the last couple of weeks of antibiotic infusions, begin first grade, get an MRI, maybe see some Blue Angels in the sky or hit a fair, get vision and hearing tests and soak in a bit of warm late summer sun. Then we'll hit the ground running on September 29th when JT is admitted back to big house for his first full regimen of chemotherapy.

JT's Crew around Darth JT before his last therapy. Thank you again and again and again. We owe you more than we could ever possibly repay.

Dr. Ted and Nurse Red put JT under for the 31st and last time.

Darth Judy

The past week...

(OK, so it's been a week since the last posting, and we haven't outsourced it yet, so I'll give Don a break and take a stab at it this time and see if I can come close to his wit and wisdom.)

The Taylors had a wonderful weekend being around friends and family for the last three days. On Friday we went Kingston, NH to see some old friends, on Saturday we picnicked with the MCCP, and on Sunday we joined the Taylor cousin reunion in Ferry Beach. All the while, honing our skills on either the Nintendo Ds or the Wii – I’ll tell ya, J's friend Sammy can play Wii baseball with the best of them.

Monday morning found us back at radiation therapy for the sixth and final full week – yay! We wrap up radiation on Monday the 25th. The one and only hiccup was that JT’s medi-port wasn’t seeing things our way. Even with a new needle. It was allowing meds, saline and the such to go in, but it wasn’t allowing anything out (i.e. blood return). Suddenly the wisdom of "no red, no meds" became clear. Before he got chemo, he got a dose of “catheter liquid plumber,” as I've come to call it, in hopes of clearing the gunk out. After letting the meds sit in the catheter and break down blockage, things were flowing both ways once again & we were on our way with IV antibiotics pumping away.

Apparently while getting his post-radiation hash brown fix at Mickey D's on Monday, James had a bit of a revelation. It dawned on him that McDonald’s had been giving out Star Wars toys since Friday, and he was just now getting his long-awaited Star Wars Happy Meal. Heaven forbid, he have so much fun with family and friends that he forgets about Happy Meals for 3 whole days!

Tuesday through Thursday of this week have held little excitement, fortunately. We got back into the routine of physical and occupational therapy to gain strength and motor skills, and are counting down the days until the end of radiation treatments and the beginning of school. James has expressed his disappointment with ending his daily "naps," and even said he didn't want to go to school, he just wants to keep going to the hospital to learn "doctor things." Don reminded him that there's not a Dr. in that hospital that was able to skip first grade! So James has decided he wants to be "a doctor like John," one of the many radiation care unit nurses that have been absolutely great with J. Little does he realize now the years of school ahead of him, but think of the jump he'll have on a lot of other med students with all this first-hand experience!

Take care out there & thanks again for your well wishes and support! It's really helped us get through this first phase. Have a great weekend! - Jenn

Walking for James & MCCP

In case anyone is interested, the Maine Children's Cancer Program where James receives all of his therapy and support is having a walk on Sept. 27th (the Saturday before James starts his next round of chemo treatments).

I plan to walk and have formed a team named JT's Trekkers. If you would like to join the team by walking in Portland or one of the many other locations in Maine (Augusta, Lewiston, Sanford, Brunswick, or Waterville), we welcome the company and support. You may also walk as an individual, form your own team, or simply volunteer at any of the locations.

You can find more information by visiting https://fundraising.mmc.org/NETCOMMUNITY/SSLPage.aspx?&pid=246&srcid=183.
You can search by my name, the team name, and you can also sponsor the team by donating online through the same link.

I apologize for any bugs in the link or my directions to it; this sort of thing is a bit new to me, so I'm trying to get everything linked as best I can for everyone out there.

If you have any questions, feel free to comment on the blog as well.

Thanks again for all of your support! - Jenn

Home Again.....

JT was told grab his things, antibiotics and IV pump and hit the road. We're back home....and James and Jack are already pretend fighting in the living room. Ah, click your heels and repeat after me..."there's no place like home...there's no place like home". Ugh.

The new IV unit is pretty cool. It holds 48 hours worth of meds and pumps them automatically over the course of an hour every six hours. The downside, he need to carry the unit around in a sling-style pack (it's about the size of two video cassettes - I know, what's a video cassette, right? If you're too young to know, then look it up, or better put....Wikipedia or Google it). But I think after a few days he's going to be okay with it. He'll need to have these meds for 4 weeks. We're all crossing our fingers that this will knock the bugs out for good.

On a lighter note, for being such a good sport he was able to get a new game for his Nintendo DS. We went to Game Stop and picked up some sort of Cars racing game - Understand that this gaming thing is a new, foreign world to me. Well, twasn't twenty minutes later he lost the whole kit and caboodle after acting up. I think he set a new Taylor record for fastest toy put in "time out". The poor boy never even got it home. Tomorrow's a new day, though, and hopefully he'll enjoy his new game.

We'll be taking the next three days off to heal, rest, hang with some old friends travelling north, enjoy a MCCP picnic and go to a Taylor family reunion. Hope to post some good pics here next week.

Till then, take care and enjoy your weekend everyone...
dct

One More Night....

..and by that I don't mean the "lovely" Phil Collins ballad. I mean we're hoping that this will be JT's last night in the big house for a while.

JT is resting comfortably in his room while the team of doctors and lab personnel attempt to figure out just what type of infection he has. One theory is that the current infection stems from his original infection. In essence, the first treatment just didn’t get all of the junk out and it grew back.

If this is in fact the case, the plan (tentatively speaking) would be to send James home on some new antibiotics. The difference this time would be that he would be hooked to an IV pump every six hours for 4 weeks with a few hours "off pump" every couple of days. This is quite a change from the last go-around which had him hooked up for only about 40 minutes/day for 2 weeks. But if that’s the deal, we’ll play the hand. I’m all in.

So far, JT hasn’t minded too much that he’s back in the hospital. Another boy, Isaac, who is battling his own health problems found himself back at BBCH for central line work. JT and Isaac have seemed to hit it off and have spent some time in the playroom and chatted about different Nintendo DS games. As much as I hate to see Isaac (or JT) spend any time in the hospital, it is nice that the two have become familiar with each other.

Hopefully, the next update will be from home. And, just so you know, we haven’t forgotten about the interview. Stay tuned. We will re-join our regularly scheduled programming shortly.

Be careful out there…
dct

Another Infection.....

Tonight finds JT back at Barbara Bush Children's Hospital. The difference this time, room 635.

During the past 24 hours JT has been fighting a cough and a spiking temperature. Last night Jenn and I spent a lot of time checking on JT and watching his temp go up and down. At one point around 3am we decided that we'd take him in but at the last moment his temp dropped and we stayed home. This morning at radiation therapy his temp remained in the normal range but he developed some upper respiratory congestion which complicated the overall therapy. While JT was never in any trouble the situation did prompt his nurse, fondly referred to as Auntie Judy, to call Maine Children's Cancer and ask that he be evaluated prior to being discharged for the day. She didn't want us to leave, go to the clinic only to be turned around and drive back to the hospital.

After a quick exam and consult it was decided that JT would leave Maine Med and go to his scheduled chemo appointment at the clinic in Scarborough. While at the clinic JT got his chemo treatment, some antibiotics, chest x-ray and they took some blood cultures. The treatment went well and the chest x-ray came back okay. So doped on some antibiotics and Tylenol JT was given his walking papers and Jenn was given the orders to keep an eye on all the typical things. Tonight, James started off well but at about 6pm he began shivering, got sick and spiked yet another temp. Jenn called MCCP and Dr. Rossi gave us permission to give some more Tylenol and watch the temps. Then at 9:30 Dr. Rossi called and told us that the lab had contacted her and JT's blood cultures had, in fact, come back positive for infection and that he'd need to be admitted. So out the door we went. I dropped Jenn and JT off at Camp Maine Med at 10:15 and he was admitted.

We're not quite sure what the infection is yet, but if history is any lesson he'll probably be in for a couple of days. My fingers are crossed that it is as smooth as the last time. For now though it's time to rest.

Take care,
dct

Ups and Downs…..

This past weekend JT got to enjoy nearly 36 hours without his medi-port being accessed. Or better put, no tubes attached! I would say that for the most part JT’s weekend was pretty okay. Saturday was probably longer than he’d have liked (we all went to Sanford for Jenn’s grandmother’s funeral) but he was able to play, take a bath and joke around without the worry of hitting his access point. All in all he laughed a bit, cried a bit (because of me I’m sure) and got to be a six for a bit.

Now, a word about JT’s bath on Sunday. Many of you are aware that JT is in the process of losing his hair and of our subsequent decision to shave his head. Well, it’d be naïve of us to think that just because we shaved JT’s head that all the little stubble wouldn’t fall out. I just didn’t expect that when Jenn gave the bugger a bath- and washed his scalp - the stubble would all rub out! And that folks..is what happened. He went in the tub stubbly and came out Mr. Clean. (Except for a small patch at the base of his skull – now, I just want to save that part!)

Monday began JT’s fourth week of radiation. For JT, his week begins by getting his medi-port accessed. Mind you this is a process that would, most likely, un-nerve some of us adults…let alone a six year-old. Regardless of all the numbing Emla cream you put on the access point, the nurse still has to stick a one inch needle into JT’s medi-port by his collar-bone, and JT doesn’t like it. One bit.

On this morning, with his anxiety running sky high, the decision was made to give JT some Versed to try and ease his worried mind. This drug is designed to make him a wee-bit loopy so that the nurse can access him with less “resistance”. The problem was that the Versed dose wasn’t quite enough and JT was still “with it” enough to express his…oh, how-do-you-say……displeasure. Then to add insult to injury he complained of his port hurting “underneath”. This prompted further action – Lidocaine shots around the port to ease any discomfort. So, in the end, the kid who didn’t want any pricks, owies or otherwise wound up with at least three and was mentally together enough to recall all of it. Poor guy. No one wants to be a pin cushion. But shit like this is going to happen. And no one’s to blame. We can only hope that there’s some time to heal before it happens again.

Monday night, after JT had lied down in bed and the Taylor house was quieting down JT slipped out of bed to talk with his mother. Apparently, lying in his bed he began to worry that in the morning he was - in some way, shape or form - going to have to relive another accessing. Despite reminding him of the fact that he was already accessed (he can look down and see his tube hanging off his shoulder)and he wouldn’t need accessing until next Monday, it was tough to talk the little guy off the ledge. Jennifer did a great job of easing JT’s worried mind by ensuring that the next Monday he’d be given more Versed and that he wouldn’t (fingers crossed) have another morning like he’d just had. After some hugs and kisses JT went off to bed (hopefully) with the peace of mind that he’s have an uneventful week.

Jump to Wednesday.

In RadCU this morning the nurse went to flush JT’s port in preparation for the morning’s procedures. After a brief moment she met resistance in the line and mentioned that she’d have to re-access him. Something wasn’t working properly in the needle. My stomach sank. Say it ain’t so! Not 36 hours earlier Jennifer and I had, basically, wagered our lives that JT didn’t have to see another needle for a week! “Can we get Versed, and a lot of it?”, I asked. After some nurse/doctor discussions the decision was made to de-access him and apply numbing cream. All the while, JT can hear most of this and is becoming increasingly nervous. Luckily, just before taking the needle out the nurse attempted to flush JT one more time. Bingo. Blood return (don’t worry that’s a good thing)! The medi-port and needle work and we were back in business! Needless to say, we’ll be crossing our fingers tomorrow and Friday in hopes that the needle does what it’s supposed to and Jenn and I get to keep our word to the kid…..

Take care out there…
dct

I’m no Oprah

As we’ve created this little space in cyber-world, I’ve done my best to tell James exactly what is going on with the blog. He clearly understands that there is a blog site and that many of his friends and family members check it out to see what and how he’s been doing. And he, like many of you, likes the pictures and stories – he’s quite fond of “The Button”episode. Many, many times I’ve asked him if there is anything special he’d like to “say” to everyone reading his blog and the answer is always a resounding “No”.

Though yesterday his attitude shifted slightly. I believe that there may be a crack in the Jimmy-armor. I came up with the idea that I could interview JT about a whole host of things (or at least what he’d let me) and post it here. In essence, have him “say” something while thinking he’s not saying anything at all. I know, it’s sneaky and underhanded. But I’m a parent. That’s part of my job - Get kid(s) to do thing(s) while he/she/they don’t know they’re doing it.

While my mind ran wild thinking of questions, I realized that I should also give y’all a shot at asking a question. If there is something anybody (kids included) is curious to ask the patient here’s your chance. You can either post your question as a comment to this entry or email us. I’ll give it a few days before I conduct the "interview of the year." If there’s interest, great. If not, no worries.

Big day tomorrow. End of radiation week three - the midway point. And a scheduled port de-accessing. The first time de-accessed in two weeks!

Love to you all and take care,
dct

Hair Today, Gone Tomorrow

JT hit another milestone early this week. His hair began to fall out. And when I say fall out, I mean fall out...It became quite noticeable yesterday morning while as he was still asleep, post-radiation, his mom ran her fingers through his hair only to pull away and see her hand covered in hair. Now you can effortlessly pick clumps out. And James does. He thinks it funny.

In talking with James, he mentioned that he wouldn't mind shaving his head so long as he could go to Snip-its on Wednesday. Why Wednesday? No clue. That's just what he said. This morning though, Jenn mentioned that today would be better where JT is now leaving a furry trail wherever he goes.

So, following the fashion trends of his buddies Tate, Big Jack, Ben D and Mr. Balzano James is going sans hair....

Love to you all. Enjoy the pics.
dct

Thinning.....

An ode to New Kids on The Block.

Working the back.

Concentrating on his video game....

Aw yeah!

Bald is beautiful!

Radiation: Two Weeks Down...

..four to go. James will get his first opportunity in two solid weeks to not see the inside of a hospital. The good Lord willin’ we shall not return until Monday.

Last I posted, James was getting his antibiotics and clearing up his infection in the hospital. Since then he’s returned home (Monday afternoon) but is still on IV antibiotics for a few more days. On JT’s first full day home a visiting nurse came and educated Jenn in the fine art of IV administration. Now mind you, James is still accessed via his port, so there aren’t any needle pricks for this. But nonetheless, Jenn has taken on the roll of Clara Barton and is mastering the S.A.S.H. – (S)aline, (A)ntibiotics, (S)aline, (H)eparin - process. Bless her heart. I can’t tell you how many times we’ve heard a derivative of the phrase “bet you didn’t think you’d be nurse by the end of this, did you?” We’re quickly learning the stark truth to this notion. If our house was bugged, at times, the listener might think that we were re-enacting an ER episode. Drug names, procedures and conditions roll off our tongues as if we’d completed medical school. So, if anyone is interested in discussing the administration of the InterMate Infusion System...Jenn’s available most evenings.

As for JT, he says that he’s feeling well. So for the most part, we take his word for it. He’s perky when he’s doing what he wants and a cranky crab when he isn’t. Lately most of his ‘negative’ feelings are Daddy induced. When I tell him ‘No’ or that, in fact, he does have to eat something for dinner before he can play his Wii, he’ll get pouty. Probably a little bit more than a normal 6 year-old….but, really, just the same.

Last night, though, JT did mention that his head hurt and we’ve begun to see some hair on the bed in the morning. Yet another reminder that while we’ve been blessed to see plenty of healing and improvement (emotional or otherwise), the physical changes – such as hair loss and weakness – have yet to fully arrive. Jenn inquired about JT’s soreness and one nurse told her that it’s reported that during hair loss the scalp gets a “funny” feeling to it. Something JT may be communicating to us as “hurting”. Suffice to say, we’re going to do our best to throw some fun diversions at Jack and James this weekend before we wake up on Monday and climb back on this wild ride.

Thanks for reading and be safe out there,
dct

Ways I know...

...we've spent far too much time at the hospital.

1) I look up for corner-bubble mirrors at home and work...
2) I miss mac-n-cheese Fridays when at home...
3) I blog and pay bills online from the hospital room...
4) I can easily distinguish the subtle sound differences between an HVAC unit and the final approach of a LifeFlight chopper...
5) Watching LifeFlight landings and take-offs are sooo last month...
6) We've been told by insiders about the super-secret ketchup-packet stash...
and finally...
7) The Cafe staff asked me..."Are you an employee?"

Infection Update....

The doctors have narrowed down the infection to what family it belongs and we are now waiting for confirmation as to which family member this bugger is. Imagine, if you will, you were to visit the Taylors and were greeted by awful stench. You know that one of the Taylors stinks (the family). Then in your investigation you find out that, Jack (the family member) has pooped his pants. Of course, instead of "eliminating" Jack, we'd probably just "eliminate" the offensive issue.

Anyhow, once the culprit has been confirmed then the final lab work - the sensitivity - will be done (read: "what antibiotic best kills the darned thing" not "what makes it cry and cuddle") and JT'll be on that antibiotic for 10 to 14 days. It looks as though we'll be discharged on Monday. But not before his regular radiation therapy and his first chemotherapy drug, Vincristine, is administered.

Meanwhile JT is chillin' like a villin'. Watching TV, building Legos and surfing the net sans fever.

Love to you all,
dct

Room 636....

.....at Barbara Bush Children's Hospital has an odd grip on us Taylors. It was five weeks and one day ago that James was given this room as we prepared for his surgery. And tonight it's from where I type this entry. There are 48 kids being treated here tonight. All the rooms in the inn are taken. And we ended up in the exact same room. Whoa.

Long story short, James began spiking a fever yesterday. His temp got to the point that last night that the doctors at the MCCP clinic advised us to take JT to the emergency room and have blood cultures drawn and possibly get an antibiotic. James went to the hospital and both were done. He was sent home later that night with the instructions to follow up with MCCP and to watch the temp.

This morning we went to rad-therapy but JT maintained his temperature. During his therapy Jenn called MCCP and just before noon they called back and asked that he be brought down to the clinic. At clinic he was accessed, received another round of antibiotics and took a nap. It was during the afternoon that the oncologist decided that it would be best that James be admitted to BBCH until the final results of the prior night's blood cultures came back. The thought was that JT may have an infection around his port. Unfortunately, BBCH was full and Jenn and James had to "wait it out" at the clinic. At around 5pm James was finally admitted and was given his old room.

The good news is that James' temp seems to have dropped and he has a little sparkle in his eye (though that could be the steady diet of Cartoon Network). The cultures are now coming back and the hope is that the bug will soon be identified and we can knock it out sooner rather than later.

But until that time comes we'll rest in the comfort of what seemingly has been our summer camp over the past five weeks, BBCH room 636.

Love to you all,
dct

A Morning in the Life of James Taylor...

Today I thought that I’d let the pictures do the talking.

A sly smile in the elevator....

....to the basement.

The long walk down to RADCU.

"Dad, c'mon, stop taking pictures"

Shirt off, ready to roll.

A quick story while waiting.

Off to the treatment room!

Quick stop outside....

..and in he goes.

"The Machine" - Out of that glass square thingy comes the lasers and radiation.

So, here you see the table that JT “rests” on. JT is brought up to the table broadside, put to sleep and then flipped onto his stomach to lay face down. The plastic mesh “basket” that you see at the head of the table goes over his head and is secured to the table. This ensures that while his therapy is going on his head doesn’t move. Clearly, this is precise science and movement is not so good. This may also give you a clearer understanding of why JT needs to be put under during this. God love him, but, there’s just no way he’d stay still.

Sweet dreams.

JT’s notes and stats in the control room.

..and we’re done. Time to wake up!