Please join in support of the Maine Children's Cancer Program

The 2009 Maine Children's Cancer Program Walk is scheduled for this Saturday, September 19th rain or shine. James & I will be walking on the team named JT's Trekkers & Team Tucker, a joint venture on behalf of James & his buddy Isaac Tucker who has leukemia.

The link is below if you'd like more info. Just search for a walker under Jenn Taylor or JT's Trekkers if you'd like to sponsor or walk! Registered walkers that raise $50.00 in donations get a Walk T-shirt that day.
Thanks again for all your support!

https://fundraising.mmc.org/NetCommunity/SSLPage.aspx?pid=246

Boomerang Part 2 - What a long week!

So again...throw us out and we'll come right back! After feeling like we'd wrapped up visits to the hospital for a while after James' last chemo admit on August 5th, and enjoying some of the real summer weather (with a spontaneous trip to Splashtown on the 14th), we ended up back up at the big house last Sunday the 16th. James woke up with red bloodshot weepy eyes and developed a fever late afternoon, which when you have no white blood cells & a fever, means you're staying at BBCH for a few days.

The fever went a way quickly, but the red eyes took their time. We rested in a shaded room pretty much all of Monday as his eyes were so sensitive to light he didn't even want the curtains opened. Tuesday was better; he got out of the room but was still pretty sensitive. We got out on Wednesday after a few days of antibiotics and slightly climbing blood counts. Hearing test & labs again on Thursday to check his progress, and then an MRI on Friday. Still waiting on results from that.

Company & fun this past weekend, sans Hurricane Bill thankfully. Now James is tired, but for some good reasons too!

Round #9 - All done chemo!

So here we are on the last day of James' last chemo admit! He woke up around 6:15 a.m. long enough to express his awareness and happiness that it's the last day of all this, and promptly went back to sleep!

Yesterday I brought in cupcakes as a small token of thanks to all the nurses and staff here at the hospital. His pal Alice from Child Life Services made a huge neon poster for all to sign and hung it on his door. We painted golf balls that will be used in a BBCH fundraising golf tournament later this summer (yes, it's finally summer here we think), and played a few games of pass (pass-the-ball-past-Mom, that is) in the atrium. We've seen some familiar faces and met some new ones, and there's a performance by Circus Smirkus here today for the kids that James may want to stick around for, even if he's already been discharged.

We'll find out today when his next MRI is, and when we go to clinic again after next week's scheduled visit, but for now we know that he's got 1 more clinic visit and labs until his numbers and the docs say otherwise.

Honestly, it's all a little strange. We've been on this road for so long, not always knowing where it would lead, helped along by the love and support of all of our family and friends, and the amazing doctors and nurses. Now there is a big turn in the road, and it looks a bit smoother ahead.

I know we've said it a hundred times or more, but we can't say enough how much we are thankful for all the care, prayers, good wishes and support of all of you out there. We are truly blessed.

More later....Jenn

Hey folks....I do love the fact that I can post things via my phone now.

The last few weeks have been fun. JT has had a good temperment and good stamina. Just last weekend we began to get a glimpse of a healthy, active seven year old. As a matter of fact he really started to get his wiffle ball swing back. During an impromptu game he was connecting!

Well, believe it or not...tomorrow we head into the hospital to begin J's last chemotherapy cycle. A week from tomorrow he'll have his last Vincristin booster. I can't believe it. It's surreal that the year has past as fast as it has.

Take care and I'll post more soon.
dct

Home again...

Here are a few items from our week!

Despite taking a tetherball to the eye, I think James really enjoyed his first day.

The entrance

Mike and Sully gaurd the dinning hall...

Bass fishin' ...

Masquarade Ball...

Well, it's a wrap. Dinner was good and afterwards we all went down to the pond to launch the wish boats the boys made in arts and crafts. The celebration show was a kick. Both boys were in skits although JT didn't want to dance. This week has been awesome. We're going to look into a long weekend in the fall and will certainly be applying for next year. In any event I could see myself volunteering out here for many, many years.

CS Day 5: Morning discussion was great. Wonderful to hear from the parents of kids in remission and how they've dealt with it all. Kids loved their sessions. JT squeezed in another 18 holes before lunch. This afternoon has been parents free time. Jenn and I took a paddleboat out and were quickly reminded as to why we don't paddleboat. Should've grabbed a kayak or canoe. Anyhow, I'm soaking up the last of the sun watching JT play kickball. Jenn is in yoga class. And Jack is staring starry-eyed at his new bro-mance, Eric, his counselor. I have to say that of all the amazing things they do here the nearly 1:1 counselor ratio is phenomenal. Dinner soon. Then it's the Celebration Show.

Great dinner. Roast turkey with all the fixins. Boys had a blast with their respective groups. Was talking with one of the employees and they mentioned how many times they'd love to complete the Maine experience by serving lobster to the parents but haven't had the connection to do it. Anyone know a lobsterman looking for a good cause? Casual breakfast in the am then off to a panel discussion with a sixteen year-old volunteer/survivor. Should be great.

We opted for 18 holes of mini golf. Now just soaking up the sun waiting for our family portrait time. CS documents all families with photo in a book that we get upon check out. Well, that and a disc of 1200-1500 photos of the week. I guess when you've been doing it for 25 years (as they have) you learn how to do it well.

CS Day 4: Breakfast was great. Mom & Dad off to discussion group while the boys hit their groups. Quiet lunch & family playtime until dinner. Hmmm 18 mini holes, kayaking or playground? Time will tell. Boys will hang with counselors tonight while Jenn and I get to go the adult dinner. Real silverware & plates! Afterwards there is karaoke. Even if this wasn't a dry campus I'd opt out of that.

Sunshine talent show...these kids got game. Even if I had a talent I couldn't hold a candle to them.

Camp Sunshine - Day 3: Tough getting out the door. Two straight late nites. Jack went off to the Tot Lot. JT went fishing on a super fast bass boat and landed one fish. Then he hit the links for 18 mini holes. Jenn & I attended a parent's discussion group. BBQ outside for lunch. Now it's rest time. Lots planned for this afternoon. More l8r!

Fantastic evening. Masquerade/Costume dance. Jack's gonna be just fine. His head'll be sore. But he'll be fine. Might have knocked some sense in him...

Of both the kids, which ends up in clinic? Yep. Jack. Egg on his head. Classic.

Camp Sunshine Day 2. Look for tweet-like updates this week via the phone. Great weather. Both boys having a blast. Fishing w/ the Eagle Bass Masters tomorrow. Pro boats and all! Off to lunch!

James was accepted to Camp Sunshine today. We check in on Sunday!

Happy Anniversary

What a year, huh?

Exactly one year ago today we went to an eye appointment thinking James was going to get glasses. Instead he was admitted to the Barbara Bush Children’s Hospital awaiting surgery.

I have trouble putting in words the impact your support – near and far – has had on us. By just being there you’ve smoothed the bumps and eased the hard turns. Without you it’s possible that we’d be in a ditch somewhere spinning our tires. But instead we’re able to focus on helping James fight while trying to live a normal life.

Thank you.

As for Jimmy, he’s doing well. His blood counts have been down the past few weeks and there’s been chatter about transfusions to boost them. But in the end, it appears that he’s rebounding and we’ll escape another chemo round without fusin’ him.

On the non-medical side, JT has been busy wrapping up first grade, doing great in swimming lessons, walked the field at a Seadogs Game, and took a special trip to the NE Aquarium on the Downeaster. I’ll post photos soon.

The next few weeks will be busy ones. Cape Cod with friends, another chemo admit, birthdays for both boys and Camp Sunshine (fingers crossed) in mid July.

Again, thanks for being there.

dct

Shots of James and his pal, Ada, helping out at the Wayside Soup Kitchen.

Home again...

Hello,

I'm getting my social media messed up. I updated non-blogger friends but forgot out blogger ones. It won't happen again. I promise.

Well, we got out of the hospital a little early yesterday and got a decent night's sleep. Hopefully, we won't have any further port problems!

JT tells us that school was good and he's quite excited that his next science program will be about birds in the US. What's even cooler to him is that it begins while he's in first grade and continues in 2nd grade (he'll have the same teacher).

I also wanted to share that Friday's MRI came back clear. While, yes, we are excited and this is excellent news the big-time MRI test will really begin late this year when he's off his chemo. But for now we'll revel in the fact that there is no evidence of recurrent tumor and try our best to build some strength to enjoy the summer.

Peace...
dct

Any Port in a Storm

Just a brief check in...

James has recovered from his bout of conjunctivitis and subsequent allergic reaction in fine form. The only thing bothering him now is - what appears to be - seasonal allergies.

On Friday, we went into the hospital for a scheduled MRI. We found out today that the results came back clear.

This morning Jennifer and James returned to MMC for his seventh round of chemo. Now, I've chatted about this enough for you all to know that the number one thing that James hates more than anything in this world is being accessed. I don't blame him one bit. It's a damn big needle. EMLA or not.

Well, the first three attempts to access his portacath failed. The needle would go in but they couldn't get fluids in or blood out of the darned thing. Something was clearly up. X-rays showed that everything looked as if it was all in place. Finally, after a fourth attempt they were able to flush saline in. This opened the door for meds to be given to eat away at any clots in the line (if that was, in fact, the issue). An hour or so later, the port was back to cooperating (in and out)and pre-hydration could begin.

That being said, the portacath "issues" didn't derail the overall chemo schedule. It just pushed back today's therapy from what typically is about 3 or 4pm to just after 9pm. The upside is that the port works (and that's all that really matters). The downside is that we can't leave until 24 hours after chemo begins. So, were in until 9:10pm Tuesday night (at the earliest).

Hope all is well. I'll check in soon.
dct

Jimmy Red Eyes

Hey folks. Hope Spring is treating you all well. By far the best weekend of the year here in the Forest City.

So, yeah, it's been a while, huh? I hear ya.

I'm happy that the general consensus among readers is that no news is good news. And for the most part that rings true here with the Taylors.

The past month or so have been quite uneventful, medically speaking. We did have a less-than-stellar hearing appointment (hearing loss is a credible and not uncommon side-effect) but we feel because he had a serious amount of ear wax buildup it may have contributed to his low scores. And that's not just a parent in denial. We treated JT with nightly ear drops and four days later Jenn pulled out a hunk of wax the size of a Jeep. James sat up, said "I can hear!" and gave his mother a hug.

JT has steadily gained energy and we've really got to do more with less worry that JT will crash mid-stride. Now that we are aren't forced to wear snow pants and bundle up as much the freedom of bulky outerwear has led to the freedom of play. And it certainly doesn't hurt that cold season is in our rear-view mirror.

So, the past week has been sorta interesting. JT has been on April break and Thursday he went into the office with me. I had my yearly eye appointment at 9:30am and he tagged along (C'mon, is there really a better way to spend a vacation when your 6?!). Anyhow, his left eye was sort of red and the doctor tells us that he's coming down with conjunctivitis. Wonderful.

We get leave and get the script filled and on Friday it's really not looking any better. As a matter of fact the right eye is now red. And the left is getting puffier and he has plenty of eye boogers. By Saturday morning, both eyes are very puffy. Well, actually, they're swollen shut. Now James is blind. He can't open his eyes. He looks as though a prize fighter took him to task. After yet another talk with his oncologist it's decided that James needs to go see a doctor. Off to Maine Med.

The best guess anyone can come up with is that he had an allergic reaction to the eye drops! He spent last night in the hospital for observation (where I called play-by-play for the Red Sox-Yankees game at his bedside) and he got out just before noon today. The eyes are much less puffy and he can see his way around. The upside, he gets a few extra days of vacation. An, no, they won't be spent at my office.

I'll try and post some new photos and updates sooner rather than later. Although I've missed typing, I'm sure you can imagine that with James' upbeat spirits and energy levels it's tough not to put some things on hold.

For those keeping score at home. JT has an MRI on 5/8 and his seventh chemo admit round begins on 5/11.

Talk to you later. Love to you all.

dct

Eyes swollen shut. Sorry for the clarity, it's from my phone.

I can see! It's tough, but I can see!

Home Again...

Hey there,

We made it home late yesterday. JT was in a great mood all day Tuesday except for the removal of the bandage that holds on his accessing needle to his chest. He told me as he laid on his bed last night that he "didn't even feel the needle coming out." I replied that made sense because he was too busy crying and screaming over the tape.

Here's a shot of JT catching up on a little addition and subtraction while getting his meds.

Take care,

dct

Top of the Fifth...

Hey there. Today began JT's fifth chemotherapy cycle. And, of course, it can't begin easily. We awoke to nearly 10 inches of new snow. If Mother Nature is reading..enough already. Give the kids in southern California a treat and dust them with the snow. We here in Maine have had enough this winter. I know, I know. We New Englanders are supposed to be a hardy bunch. But guess what? My hardiness just up and went on vacation...to a place where there's no snow. I'm ready for spring.

Anyhow, I digress. JT and his mother checked into Barbara Bush Children's Hospital this morning around 10am and have pretty uneventful day. According to Mom, JT was absolutely amazing during his medi-port accessing. Nary a wince from the little guy. Typically, a "good" accessing involves a fair amount of whining (in opposition, not pain) and a few leg kicks. Probably the same thing I'd do if in the same position. Not this time though. Mom says that we only had a minor leg twitch. While one event certainly cannot constitute a trend, would it be a stretch to think that 30-some-odd weeks into this journey he's getting used to the big needles? Probably not, but one can hope if only for his own anxiety levels.

The rest of the afternoon was spent hydrating and finally late in the day he began getting his Lomustine, Vincristine and his six-hour Cisplatin IV. At around 5pm I arrived for the overnight shift and Jenn left to get Jack and head home. By 11pm tonight he'll have "consumed" all the chemo for this round. The following 18 hours will be spent hooked to an IV so he can pee it all out. If things go as scheduled we'll be out of here by 6pm tomorrow.

I'd like to take a moment to mention little superstar out in Colorado and ask that we all keep him in our thoughts and prayers. I came across Tyler Luttrull's story late last year and was struck by how eerily similar Tyler and JT's stories were. So much so, that I contacted Tyler's father, Jay, through Tyler's CaringBridge.org page and subsequently have had the honor to share JT's experiences with him and vice-versa. Tyler, a medullo-fighter like James, has had his fair share of battles. As if fighting cancer wasn't enough. These troopers have to fight nausea and weight-loss. Big T's has had his ups and downs but he's showing us all how to fight like a champ. Keep up the good fight Tyler. You still have a good amount of racing to do.

Here's a little glimpse into this amazing little guy. http://tinyurl.com/d2nr3u

Well, I'm going to say good night. I'll check in tomorrow. I have to go and prepare my "lovely" couch-bed and get JT down for the night.

Take care and love to you all.
dct

Full Update Soon....

In a nut shell, we've been experiencing a nice break and have a lot to update you all on. Four weeks since the last Vincristine shot and doing well. We'll be back in the hospital on Monday for round #5 of 9. 'Til then here are a few snapshots of the last few weeks.

Nearly 40 Valentines for school!

The elusive Great Horned Jimmy

Just waiting...

Uncle Whit gets JT a meeting with Teemu Selanne before the B's game.

Teemu presents JT with his game stick from the night before. Teemu scored a goal with it versus Buffalo the night before and had 18 other Ducks sign it.

JT scores an official game puck!

Intently watching the game.

Highs and Lows

Shea passed away last night. Peacefully, I suspect. The sort of peace that morphine and the such provide as the person takes the final turn off of this bumpy road.

She was only 12. She fought not only cystic fibrosis but cancer, to boot.

On the very same morning that we are waking to celebrate James' half-way point my thoughts occasionally wander off to Shea's family. Although my children are still here (fighting over video games as I type), I have been there, on the front line of end of life decision making with both my mother and brother. I just remember how quick it all happened. How you are forced to put your mourning on hold and attend to the 'business' of death. It's horrible yet unavoidable.

We knew Shea as much as blogs, conversations with friends and meeting up with her on the sixth floor allowed us to. She was part of our MCCP family. Despite not having the closest relationship with her we got to know her well enough to know that we walking on earth are much, much poorer this morning.

I try and not make these pages my pulpit and, at times, I carefully tow the line. I just ask that you join us today in raising a glass to our milestone and - immensely more important - bow your head for Princess Shea's peace and her family's healing.

State Police Pics

I previously mentioned that just before Christmas the Maine State Police stopped by BBCH to hand out gifts. Here are a few snapshots of the visit. http://www.maine.gov/dps/msp/

If those officers only knew how much they hit the proverbial nail on the head by giving this six-year old some Bakugan toys. I’m not quite sure what in God’s name they are supposed to be and/or do. But I do know this....The have the ability to control on JT’s mind. I know this because when he's playing with them he ignores every word I utter.

Enjoy the weekend folks.
dct

Why this Sunday is a Super-Super Sunday....

Yes, there is a little football game. But with the Patriots playing golf and fishing, we don’t seem to have the Super passion this year. C’mon, Arizona? Really?!

The real reason – for the Taylors anyway- is that Sunday, February 1st, will mark the half way point in James’ rad/chemo protocol. As hard as it is to imagine that's twenty-eight weeks down, twenty-eight to go - so long as we stay healthy and are able to stay on track. For those of you keeping score at home, that’d be a total of fifty-six weeks.

Diagnosis and initial surgery aside, behind us are two mediport surgeries, six straight weeks of radiation therapy, two MRIs, four inpatient chemo stays, six Maine Children’s Cancer chemo visits and countless home nursing blood draws.

Before us we still have quite a trek. Five more inpatient chemo stays, nine more MCCP chemo visits, more MRIs and weekly blood draws. But with pinch of good luck we’ll look to wrap in up in late August. Just in-time for JT to head to second grade.

Enjoy your Super Sunday. We’ll be partying too.
Love to you all,
dct

Day Two Update....

James is doing well. His meds ended last night at 11:30ish and he's getting his post-hydration now. With luck we'll be home by 7 tonight.

If I know one thing, it's this: despite all of the civics lessons imparted on our wonderful children during their early formative years they really don't give a rat's ass about inaugurations. Especially, when there are video games in the other room. But, being a smart parent, I leveraged the video games for some inauguration. Okay, I bribed him so I could watch.

Take care everyone. Love to you all.
dct

P.S. - Good luck Tyler. You know who you are....We're thinking of you.

Hey there...

Thought I'd drop a note from hospital - it's chemo day. Things have been pretty routine..admitted just after eight, hung out waiting for orders to be filled, four hours of hydration and chemo began at 5:23. Tonight, if things work properly, at 11:23 chemo will be done and we'll begin the 18 hours of post-chemo hydration. Gotta pee all that bad stuff out, ya know.

James is suffering it all with grace (as the pictures below show). He's developed quite the affinity for the xBox 360 Spiderman video game. He and another little boy got to play it a fair amount in the playroom.

Have a great Tuesday!

dct

A Sigh and a Prayer

I just got a call from JT's oncologist and the head and spine MRI that JT had this morning looked fine. Of course, it will never look 'perfect' or 'normal' since he's had surgery, but we'll take fine any ol' day.

On top of that his blood counts have bounced back. Ironically, just in time to go back for more chemo on Monday and Tuesday. It's a vicious cycle; this cancer battle.

And.....probably more important I was hoping that all of you could do me a little favor. Tonight, tomorrow, whenever...take a moment and say a little prayer for a little 12 year-old girl named Shea. We know her from our time up at BBCH and - putting it far too mildly - she's hit a rough patch and could be doing better. She and her family could use some positive energy and/or prayers. Thanks.

Enjoy your weekend everyone. And stay warm (it a scorching 4 degrees as I type)!
Love to you all.
dct

Over 3000!

So I'll quickly fill in for Don in passing along that J's white blood cell counts are now over 3,000! We are all so excited! He went from just under 200 last week to 3468 this week, so chemo on Monday is a go, keeping him right on schedule (so far), and making us feel a bit more comfortable about James being around Jack's recent coughing fits.

James also had a follow-up MRI this morning and they looked at both his head and spine. We should know the results on that next week. For now, we're simply happy with the white counts!
Take care & thanks as always - Jenn

Happy New Year!

So, here it is - 2009. As cliche as it is, time does fly. Back in June the surgery, radiation and chemo schedule that laid before us felt like it would be a lifetime - 56 weeks! Now I when I glance at the back of James' head as see his scar it feels like a lifetime ago Dr. Wilson was describing the surgery he and his team were going to delicately perform.

Not to bring the mood down here, but 2008 was one hell of a year. One we Taylors hope not to go through again any time soon. Now don't get me wrong, there were many happy moments. However, March saw the passing of my brother, Nathan, at the young age of 34 as well as Jennifer's grandmother, Irene (Grand Memere) at 85 years young in late July. And, of course, this whole little cancer thing sprouted up in June. Why we didn't just pull up stakes and head for a little cabin in upstate Minnesota is a testament to y'all out there. Your support, love and kind words have really kept us grounded and focused on the path to wellness. Thank you.

Now for some news on the man, the myth, the legend. On the outside he's doing well. Those of you who have seen him up close may have noticed that JT is getting some fuzz hair back. He's getting more rest which, along with the passing of the holidays, has seemed to keep his energy up. While a full day of school takes a toll on the little guy, he's yet to fold. Nap, yes. But not fold.

On the inside, well, he's still fighting like a champ. This last chemo round took a toll on JT's blood counts. For one of the first times the Clinic firmly warned us that JT is not to be around any sick people. His ANC counts (basically, white blood cells) were essentially zero which classifies him as neutropenic. In layman's terms, neutropenia is a condition where you have low white blood cell counts and are at an increased risk of infection. Your defenses have just been beat to hell. So that's where JT is. His body is rebuilding the little buggers as best he can. It's just going to take some time. While his ANC was basically zero a week and a half ago he's climbed to a whopping 198 this week. Now clearly I'm no hematologist, but from what I've read, to put this into perspective he normally should be north of 1500.

For those keeping score at home we head into BBCH on Friday for a "routine" MRI. Let's keep our fingers and toes crossed. While I can't imagine anything, let alone a tumor, could be growing in his head right now, I also couldn't have imagined it to be there in the first place. Then a week from tomorrow, if all goes according to schedule, JT'll be back in the Big House for another two day chemo treatment.

On a much brighter note, James has finally joined his first grade brethren who have already lost teeth. I like to say that there was a great story behind his tooth loss. A big donnybrook on the playground or something. But I can't. James simply wiggled and twisted his first loose tooth out of his melon. To say that he was excited would be an understatement. Mom and Dad feel the same. It brings a welcome bit of normalcy into the little guy's life, letting us focus on the more typical milestones of being 6. Another nice thing is that he'll now go back to eating things harder than Spaghettios.

And then there's this. Jenn and I occasionally joke that Jack is the "evil one". Geez, the way we joke about it we've probably already laid the foundation for a lifetime of therapy. The argument can be made that his curly, wavy hair is only there to hide the spike horns. There's no denying his kinetic energy can be a little overwhelming at times but he does have a cuteness factor (parental bias, I know) that - more times than not - gets him out of the trouble he's created. James brought home this picture with his schoolwork this past week and was quite proud of it. I'm not trying to say anything here, but you'd have to agree that when your 6 year old brother "paints" this picture of you.....well, we'll let the picture speak for itself. It's titled "Jack, 500 Years Old."

Lastly, I'll leave you with this. One of Jenn's co-workers spent a great deal of time and energy on making these incredible foam light sabers for the boys. They have fallen head over heals in love with them. Here they show off their Jedi talents. Don't all Jedis wear fuzzy moose slippers?