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!

Radiation Day One

Well, this morning at roughly 6:00am, JT began Phase II. He awoke in an absolutely foul mood - the anxiety of heading in to the hospital and being accessed via his medi-port had him balled up and crying. After a few moments of Jenn and I trying to break through his wall, I stepped into the next room and pulled out my copy 'Parenting for Dummies'.... Aw, who am I kidding?! I bribed him with a post-therapy Happy Meal. I admit, it I caved. But the stark reality was that we were running out of time to apply Emla (numbing) cream to his port! Drastic times call for drastic measures. I hope this isn't the MO every Monday. But if it is, so be it. Heaven help us when they're not giving out Transformers!

At the hospital, JT was clearly still nervous, but his nurse had some tricks up her sleeve and before long he was accessed and his port was flushed with saline. It really goes without saying, that the accessing is the big thing that makes him the most nervous. After accessing, they can give him sleepy juice for his therapy. The other tough part is waking up. Hopefully, after a week or so, we'll have the drill down so that we have just enough anesthesia to get him in and out in the shortest possible time. In the end the guy was a trooper today. He went under, went in and woke up (albeit grumpy).

It has just occured to me that some of you may not understand what in God's name I'm typing about, ya know, the accessing part. Well, at the risk of repeating myself, nearly two weeks ago JT went in for a procedure to insert a medi-port (see top pic) under his skin just below is left collarbone. The white tube is put into a vein and runs just to the edge of his heart. The theory is that by inserting a needle into this port - just below the skin - one can avoid all the IV sticks. The other aspect is that when it comes to administering chemotherapy by using a port, the dugs are very quickly dispersed with a few heartbeats. Anyhow, putting Emla on the little bump on his chest numbs the skin, so albeit mentally trying on him, there's no "sting" of a needle. The routine during radiation will be that James is pricked (or accessed) by the needle (see pic #2) on Monday and will keep his tube accessed all week. Good for him - he doesn't get pricked everyday; bad for us - he can't get it wet = limited bathing. But you can bet your bottom dollar he'll be getting super-baths on the weekends!

A big part of this all will be simply managing side effects. The anxiety, limited bathing, redness from the bandage over the port....the anesthesia's side effects add to his pre-existing balance challenges, so he was even more wobbly after the simulation and today. The radiation causes fatigue, so not only did he get a "nap" during the treatment, but he left a nice drool puddle on the couch from his big nap this afternoon as well. We also filled a prescription for an anti-nausea medicine today to have on hand. Now, not once in Jenn's pregnancies did she throw up, but nausea was her shadow for the first few months. Try to imagine a six year old deal with the same shadow while pining away for a Happy Meal! Perhaps his love of the Golden Arches will get him through it all!

One down, thirty to go!

Not to be Left Out...

....of the medical high-drama, Jack decided today would be a good day to shove a blue button up his nose. Yep. You read that right. A blue button. Up his nose. While walking through Lowes with his mother and older brother he tells the former that there is a button up his nose. Now, mind you, Jack also says that it fell from the sky. At this point it's sorta hard to believe a word the three year-old utters. But, a quick tilt of the head shows that, in fact, there is something up his nose and it's blue. Beautiful, Jack - just beautiful. Much screaming, tears and a little bit of bubble gum to make him smile later, the button is out. We believe he has learned his lesson on this one! Thank you very much Martin's Point for sticking around late for a button extraction!

What a Kid…What a Heart..

Just just have to tell you all about a little girl around the corner....One of JT’s busmates, Bridget. Well, Bridget turned six this past week with what I suspect were all the typical trimmings – party, cake and the such. There was just one catch to her whole big party plan. Bridget (and her family) asked all the guests to “donate” their presents to James. Bridget's mother, Mary Beth, delivered the neatly wrapped presents to my uncle, who, in turn brought them over the other night. The generosity of this little girl and her family has left Jennifer and I speechless. You are wonderful, wonderful people! Thank you.

T-Minus Three Days and Counting…

JT had his radiation simulation this morning and it seemed to go pretty well, albeit longer than anticipated. Dr. Jeff Young was very apologetic about making us wait the extra time as he and his team got (a sleeping) JT positioned on the machine and began the exacting process of moving him into the precise positions that JT will need to be in during his therapy.

One of the “obstacles” to J’s treatment is that he’ll need to be positioned on his belly. On the surface, belly or back doesn’t seem to be much of a big deal. But the fly in the proverbial Emla ointment (lidocaine/prilocaine joke there) is that JT will be put to sleep for each procedure and that alone causes a few headaches. First, is the need to access his medi-port to give him fluids and sleepy juice. Given that it located, under his skin, just below his left collarbone, they don’t want him putting direct pressure on that. Also, since he’ll be sleeping his muscles will be, basically, asleep too. Second, the “added weight” of his body while laying on his belly may hinder his breathing and put unwanted pressure on his, er, boy parts. So, as it stands he shouldn’t need to be intubated every time. But a O2 mask will be positioned under the table, pointing toward his mouth. And, pads have been found to alleviate some pressure down south. Sounds like a big deal for five to ten minutes of radiation.

We also got our therapy calendar and marching orders this morning. JT is scheduled for thirty-one sessions. Monday through Friday, 7:30am. So we have to be at Maine Med by 7:15. This is a double-edged sword…you hate to get cranking that early, but, JT can’t eat anything until after his therapy so the sooner the better.

“Phase Two” is about to begin and we’re ready to take this on. We can beat this. It’s just gonna take some time, some tears and quite a few Happy Meals. At the risk of sounding very repetitive, the support that all of you wonderful people have extended to us has been amazing, if not humbling. Thank you so very much!

dct

Breaking the Blog Silence

Hey Everyone…

I hope this finds all of you well rested from your long, holiday weekend. The Taylors celebrated the Fourth by watching Sanford’s parade and having a lunch at Jenn’s parent’s house. We arrived back home in Portland late in the afternoon and despite earlier plans to attend the fireworks we (or should I say, James) decided we should stay home. The long day just plain tuckered him and us out.

The fifth brought with it friends, family and a “quiet” sixth birthday. The b-day boy woke up grinning ear-to-ear and quickly reminded Jennifer, Jack and I that today was his birthday. My attempt to fool him into thinking that he was really, really tired and he slept right through his birthday failed miserably. With the promise of pancakes for breakfast motivating us we managed to get out the door pretty early. After breakfast we stopped off to get the all important six balloons. Later, while enjoying the great weather, those in attendance sat around Jimmy (and his six balloons!) and watch him tackle cards, gifts, cupcakes and ice cream - superhero style. I must say that I was quite proud of JT for being as patient and understanding as he was throughout the afternoon. I know that it wasn’t easy for him to sit there – sidelined with limited mobility – and watch some of his friends and relatives run, jump and play. He did get up the gumption to take a few swings of the bat in the pick-up baseball game going on, and we were quite impressed by that initiative alone! By nighttime, JT was bushed and hit the hay with thoughts of what Batman Legos he might buy at ToysRUs with his new gift certificates and birthday money.

Sunday the sixth began with Jenn, Jenn and Heather heading out (sans husbands and kids) for some real breakfast, adult conversation and shopping. Okay, the shopping may have been only been at Target, but it still, technically, qualifies as shopping. Meanwhile, Mike, Vince and I did what dads do best – fed all six kids more munchkins, chocolate milk and orange juice than should be allowed by law. With the beautiful Sunday morning sun warming us, we were able to sip coffee while Sam, Charlie, Ada, Ben, Jack and James laughed and played in the yard. Special thanks to my Uncle Pete and Aunt Sharon for use of their house as our hotel!

That afternoon, after the McKeowns began their journey back to Medway and while the DiYennos lounged on Kenilworth, we loaded JT into the Subaru and hit ToysRUs to peruse the Lego aisle. Shortly after entering, we exited with a 449-piece Batman Lego set that left quite the perma-grin on JT’s face. After arriving home, eating and doing our chores we began building a portion of his new set - the Joker’s ice cream truck. Once it was done, it was too late to begin another item and JT begrudgingly went off to bed.

With the kids asleep Jenn and I broke into James’ new Wii (graciously given to him by the McKeowns – way, way too much guys – you are far too kind) and got to setting it up. Now mind you, I have nary a molecule of video gaming talent in my body. Never, ever have I been good at that sort of stuff. That being said, had anyone driven by our humble home at 10pm on Sunday night, they very well might have crashed into our maple trees at the sight of me “bowling” in my living room. There is no doubt that I looked like a complete moron. James however has become quite the pro bowler. His initial hesitance wore off, and bowling of all things has become a bit of an addiction, with baseball coming in a close second. It does seem to be improving his gross motor skills and balance, so we're sneaking in the therapy any way we can!

Monday we met with the staff at the Maine Children's Cancer Program down in Scarborough, got our bearings there for our weekly trips for chemo that will start in a couple of weeks. Tuesday we had a baseline hearing test to see where J's hearing levels are now, so it can be compared against later tests. Hearing loss can be a side effect of one of the chemo drugs as well as the radiation, so to know that we're starting off with healthy hearing is a good thing. (It's just his six year old listening skills that are the issue apparently!)

We're continuing with occupational and physical therapy this week as well, learning new exercises to strengthen his muscles and improve range of motion. Thursday we have radiation simulation, a trial run of sorts, with the doctor taking all the necessary measurements and making a brace for J's head to make sure it stays still during treatment, even with the sedation he's likely to be under each day for treatment.

So, that's plenty for now. Our thanks again for the continued well wishes and support. Hope you are all staying cool in this beautiful summer weather!

A Smidge of Good News....

Just a quick post to tell you that we heard back from the doctors today and that James' spinal tap came back "clean". Yay! Previously, we had discussed the MRI spine images with doctors and they had told us that they felt that JT's medulloblastoma had not "seeded" down his spine. But until the results of his post-operative lumbar puncture were back no one could tell for certain. Well, suffice to say, we're pretty happy for the little guy....we still have quite a road ahead of us..but..again, Yay!

Currently JT is resting up for a long day of both PT and OT tomorrow. On top of that we're all gearing up for JT's sixth birthday on Saturday. We'll celebrate with a very small, quite "Superheros" party - well, as small and quiet as a Superhero party can be. The only request JT has for his party is that he have six balloons. One Superman, one Batman, one Spiderman and one each, plain black, blue and red. I suspect that we can fulfill that one wish (along with a few surprises.)

Love to you all and please enjoy a fun, safe Fourth of July weekend!
dct