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