Wrapping up June

Sorry for the lag in posts; we've been settling in at home, getting reacclimated to a different kind of schedule. Friday morning we had a meeting and evaluation with the visiting nurse who will be helping us at home with James' central line, blood work, and general check-ins on his status. After reviewing his treatment plan, she said to me, "You and I will become good friends." I'll take all the friends I can get in this!

Speaking of good friends, we need to thank from the bottom of our family's collective heart, ALL of the people at Fairpoint, Hall School (James' school), DBC and Lollipop Lane day care. We could never have imagined such an outpouring of support! We are deeply touched....more than all the words on this blog can even begin to say.

Friday was also Jack's 3rd birthday. Those Terrible Twos turned into the Tres Tempermental Threes. Poor little guy has been juggled around quite a bit the past few weeks, so it's all very understandable, but I can see we've got to dig our feet in a bit deeper with him now, as he digs his in deeper. He does still catch me off guard each time he asks James "Do you feel better?" or "Are you happy now?" with a big genuinely interested smile on his face. And I think he surprises James with it too, since it has for the most part made James smile.

The weekend was relatively quiet. It started with a few special deliveries on Friday from work, a buddy of J's from school & from our Turner family. Saturday involved a brief trip to Toys R Us to satisfy James' ever increasing Lego obsession, and Sunday was a quiet day spent mostly at home. Don had a break from all the action at home, and got out of town for the day with the boys. As his cousin reminded him today..."Hey Don, there's this new thing out now...it's called SPF...you might want to check it out." Love the vest, Susie Q.

James has had a break from the physical and occupational therapy since we've been home, and has yet to complain about it. He certainly seems more relaxed at home and willing to walk a bit more on his own, but we know...and he knows...the therapy will make its way back into our schedules.

So, sure enough, just when we get used to this pace, there's a little hill ahead of us. Today we took a trip back to the hospital for a day surgery visit. This shorter stay was for the insertion of the catheter port that will be used for IV chemotherapy and blood tests, a spinal tap to check the spinal fluid for any tumor "crumbs" (as we've started to call them for James' understanding), and the removal of the stitches on the back of his head from the initial surgery.

Surgery went well for James; he was asleep before even getting wheeled into the O.R....but my first trip into the operating room certainly left an impression. People keep asking how I'm doing, and for the most part my reply has been "OK." But there are moments...like standing in that white, bright room, with our little boy lying on that table, albeit peacefully asleep, that finally hit my heart, that even now 10 hours later...I'm not so okay. It's strange how it's creeping up on me little by little, each step of the way, as yet one more doctor talks to us about "risks," or as worry about J's flushed cheeks, and wonder if the moodiness he's exhibiting really is just because of the steroids. My mantra seems to have become "one step at a time" in more than one sense.

On that note, we've got June wrapped up. So far, we're doing pretty well considering. We'll take July one day at a time as well. With our love and thanks again - Jenn

Boomerang

Throw us out there and we'll fly right back...

Although we left Maine Med just last night we found ourselves returning today for a radiation consultation. JT, Jenn and I met with Dr. Jeff Young who will be administering James' radiation therapy. I felt that the consult was positive (although James refused to talk the entire time) and we were able to discuss the ins and outs of the therapy and really what to expect. The biggest challenge will be to see if JT is willing/able to remain still for the brief period he is on the radiation machine.

If during our simulation visits it appears that he can't (or won't) then we'll have to 'resort' to using an anesthesia to lull him every day. A prospect that makes this process just that much harder to swallow.

So, we've taken the first step in talking with JT about the big, scary machine and how he fits into the mix (plenty of Star Wars metaphors). Now we need to reassure him that everything is cool and have him practice lying on his stomach. Next week we'll be back in for some more simulation and to get a custom "basket" head brace to ensure that his head doesn't move during therapy. In the end, James needs to trust the doctor and get over any fear of the machine (no small task if anyone has ever been in a radiation room.)

As for JT's day, he had a decent day hanging with his mom. Although his mobility is greatly limited (he's trying to work through balance issues) he is in seemingly good spirits. His uncle, Chris, and young cousin, Russ, stopped by this afternoon as did Jenn's friend, Allisyn, and her 3 boys. Thank you for the visits. Now, JT is resting as he gets geared up for Jack's third birthday tomorrow. The rest of us will follow his lead shortly.

Love to you all,
dct

13 Days, 5 Hours and 32 Minutes...

....after entering Maine Medical Center we left. The Taylors are home again as a family and JT is resting in his own room.

Thank you to everyone - family, friends, co-workers, nurses, students and doctors - who helped us through the past two weeks. I don't know that I can re-pay each of you enough in my lifetime.

Now begins a new chapter in this crazy saga. Radiation consultation late Thursday. Enough for now. It is time to rest.

Love to you all,
dct

Steady as She Goes...

Monday was pretty smooth in JT-land. I went into the office for most of the day while James hung out with his mom and the cartoon box during the morning. He muddled through PT and speech and spent some time with his grandmother while Jenn got out to run some errands.

One noticeable change in JT was that there was some swelling on the backside of his head where the ventric tube had been. We called in a doctor to look at it and they seemed pretty cool that it was just swelling and not an overall increase in brain pressure (other symptoms of elevated pressure- nausea and headache). JT wrapped up his Monday with a wonderful visit from his friend next door, Izzy, and her mom.

This morning, James' swelling had seemed to migrate toward his right ear. Again, the doctors were called up to take a peek and they seemed okay with it.

At 1pm today Jenn and I met with the whole "Larsen Team" and reviewed JT's case. According to the speech and physical therapist they felt that he was doing well and that he would benefit from being at home where he would be comfortable, play and not have the pressure to perform. The medical members felt that James was stabilizing well and that, really, neurology would (and should) have the final call as to when J was good to go. The general feeling is that Friday may be the day.

When he does come home, JT will have home PT visits until he is strong enough to make the trips to the PT office. Additionally, JT will be back at Maine Med (probably next week) for another procedure to have a central line put into one of his veins. This will aid in the procedures that will follow for the next fourteen months - radiation and chemotherapy. At that time he'll be put to sleep and the team will also perform a spinal tap to check and see if there are any other tumors (the bright side of this is that the MRI showed no 'seeding' in the spine).

Another post on the pathology, diagnosis and treatment will follow soon. Love to you all.
dct

Getting here from there....

Some of you, for good reason, have asked us how this came to be. Well, hopefully, what I post here will give you an idea of how JT ended up at "First Words".

A few months back, James bumped the back of his head. Harmless, we know. But shortly thereafter he complained to Jennifer and I about some double vision. Jennifer made an appointment and Dr. John Vogt checked out JT. While Dr. Vogt couldn't replicate a lazy eye, he felt a complete opthamology checkout would be in JT's best interest and made a referral to Dr. James Berman at Maine Eye.

Now Jennifer and I both have corrective lenses so we've viewed the whole issue of eye correction for both of our kids as more of a 'when' not an 'if'. The only thing was that we didn't get into glasses until junior high and were hoping that maybe the kids would hold off a bit. Anyway, off we went.

On June 12th Dr. Berman examined James and determined that his optic nerves were swollen and that this would only come from pressure on the nerve from the backside (brain area). But why? Dr. Berman scheduled a CT scan for 1pm and a neurological consult for 4pm.

We made our way to Maine Med and JT had two CT scans. After a brief wait, the radiologist told us that there appeared to be a "mass" in JT's head. The same little head that was running the bases at t-ball just the night before. James was immediately admitted to the Barbara Bush Children's Hospital and worked into the schedule for a late-day MRI.

While waiting, Jennifer and I met with the pediatric team, the neuro-surgery team and the oncology team. It was all just a whirlwind. Then a treatment plan was put into place - MRI and surgery were certain. Pathology would decide the extent of oncology's role.

At about noon on Friday, June 13th - a mere 27 hours after Dr. Berman initial exam - James was wheeled from room 636 to pre-op where the anesthesiologist prepped to put JT to sleep for, gulp, brain surgery. As you can imagine, time stood still as Dr. James Wilson and his (amazing)team went to work for just over four hours.

At close to 6pm on Friday evening we were reunited with James in the Pediatric Special Care Unit and waited for James to wake up. When he did we were braced for the silence that followed - we had been warned that temporary muteness can be a side effect of this type of surgery. We sat and slept by his side and on Sunday - Father's Day - June 15th we got our "First Words".

As always, thank you for your amazing support. Love to you all.
dct

and a Better Sunday Afternoon

So the drain is out! And so is his last IV. No tubes! James is quietly eating his lunch now without anything attached to him except a hospital bracelet and some band-aids! I don't think he yet realizes the extra freedom this might lead to. One doctor even mentioned that it might be an option to sneak out of the hospital for a couple of hours and visit home! We'll see how this afternoon goes. We've got a bookmark to make, some rest to get, and are expecting a couple more visitors today before we think about sneaking out. One step at a time, and for now it's good to know that we've taken one giant step this afternoon! - jet

Good Sunday Morning....

JT and I were awoken by the nurse early this morning for J's follow-up CT scan. After returning and finishing up breakfast one of the on-duty neurosurgeons came up, reviewed the pics and told us that the ventriculostomy can come out.

The ventricles are still appear "swollen", but, the Doc told us the brain is not very elastic and we really could be looking at James' baseline since he's lived with the tumor. The decision comes down to weighing risk factors: The longer the ventric is in the greater risk for infection vs. taking it out and running the risk of elevating pressure (water on the brain). Considering that JT's been clamped (no drainage) since Thursday morning and has shown no signs of pressure (he makes about a pint of fluid a day) the decision is to pull it. We are psyched to be free of tubes.

We're off to PT right now. More as the day progresses. Love to you all.
dct

Maybe Tomorrow....

The CT scan showed that JT's ventricles are "swollen" so the ventric tube has to stay in for another day - but will remain clamped. JT will make the trip down for another CT on Sunday and the ventricles will be re-evaluated.

Now, are they "swollen" because the fluid is not draining down the spine? Or are his ventricles just normally that way? There aren't any other symptoms of elevated pressure - headaches & nausea. But, in the end, it's better to keep it in another day than run the risk of having to go to the OR and put another tube in.

Talk to you later....
dct

p.s. We finally made it outside today!

Fireworks

So amongst all the amazing things we've seen this past week....James' progress, the outpouring of support and love, a dramatic change of plans for this summer....James & I got to witness something we don't normally get to see from such a level.


Thursday night at Hadlock there were fireworks after the game. Thanks to the speedy help of Nurse Cindy, we were able to scoot over to the couch by the window of our temporary home here on the 6th floor of the BBCH and watch the light show from a height we've never experienced before. And what a show it was! Just when we thought it was the finale...there was more! And there were pyrotechnics we'd never seen before. In addition to the twinkly ones, the big expansive ones that seem to take up half the sky, and the ones that go higher than you expect, there were swirly ones that seemed to look like a far off view of the universe, with a bright core surrounded by a blurry circle of lit-up dust twirling around the middle. It was a great display!


So the Fourth of July comes to mind. Two years ago, we watched the Portland fireworks sitting in chairs along the sidewalk of Back Cove, across from the playground, close enough to the ice cream truck to grab a treat. Last year, we huddled under the cover of a tree to prevent getting totally soaked until the mad dash back to the car in the pouring rain. This year, I'll take a rainy spot on Back Cove over the couch here at BB.

jet

Long Day....

James has just now fallen asleep. It's been a long day. But good day. The alertness that was there yesterday made some appearances, but there was more grogginess. Part of that is the fact that he is being forced to sit up in chairs and walk to the bathroom. Then there was the mental stress of the CT scan this afternoon - at which he was a champ. Bottom line is, though, he's focusing a ton of energy on healing.

Dr. Wilson, in looking at the back of JT's head, was pretty confident that the ventric tube could come out. He just wanted to see the CT first. Since we live by "hospital time" that may happen tomorrow. May not. Only time - well, hospital time - will tell.

Clearly the toughest part of the day was as James lay in bed this evening he confided that he misses Jack. I wondered if he meant the same little guy who bugs the ever-living crap out of him at home or if he meant someone else. It's the little guy. We assured him that sooner, rather than later, he'll be back home ....and Jack will be bugging the ever-living crap out of him.

Lastly, I wanted to thank those few people who came in and met with Dr. Larsen and Deb from MCCP. It's not that Jennifer and I couldn't have told you each the same information, but I guess it we wanted you to feel connected to the people who are becoming part of our family (and by association yours). Thanks for listening.

Love to you all...
dct

Snoop Dogg...

Okay, on a lighter note...My sister, Maggie, and her boyfriend, Michael, dropped off binoculars for James. I must admit that I've commandeered them and my current obsession is sitting on the couch and scanning the Forest City (not to worry, no windows). Hey, a reasonably well-adjusted adult can only take so much Cartoon Network. And in that vein, does Gilbert Gottfried do voice overs for every cartoon?
dct

PT, Speech and Lightsabers...

...that's what Thursdays are made of.

JT did well overnight. Jennifer hung here at the hospital while I took Jack and spent the night at the house. I haven't quite figured out where it's better to sleep - on the "couch" here or at home. Odd. I would have thought home would be pretty good, but right now they're equal.

Anyhoo, James' earlier, ahem, "issues" have "passed" and he seems in better spirits. This morning Jack came in with me and had breakfast with JT before heading off with Jenn to daycare. James followed breakfast with back-to-back hour-long PT and Speech sessions. We wrapped up the morning with grilled cheese and Star Wars: Revenge of the Sith.

I'll open up a little here and tell you that, yes, we've met with the oncology team and we have a diagnosis. We're taking our time digesting it all and trying to manage talking to each of you individaully. What I will say is that the Taylors - especially James - have a long, long year of treatments ahead of us which will certainly require your support. We'll post more details in due time.

For those of you at Fairpoint & DBC, thank you all again for the (sometimes overwhelming) outpouring of support, love and prayers.

For now, it's nap time. Love to you all.

dct & jet

p.s. Here's Starsky..on loan to JT during his stay from one of the teachers here on the floor. The gentleman's name is, you guessed it, Hutch. Starsky, from his perch atop the fridge, watches over all who enter.

Eggs with a side of PT

As I suspected, James had a good night of sleep after being up so much yesterday. He woke up and ate his entire breakfast of cartoons, eggs, bacon and a peanut butter sandwich.

Shortly after breakfast, PT showed up and took JT down to the rehab room where he played with big Legos to work on using those arms and hands. In doing so he had to walk a few steps to and from the wheelchair. The plan for the foreseeable future is PT twice a day. We'll meet with the entire team next Tuesday to go over the entire rehab plan.

Dr. Deano, one of the neurosurgeons, swung by and raised JT's fluid shunt (to technical to explain in a blog). This will test JT's own fluid dispersion. He feels that JT may be ready for a CT scan on Friday to see how the fluid pressure/ventricle is doing. Based on what is seen, maybe the shunt then comes out.

You all have blessed us with your prayers and thoughts and we appreciate each and every one. Today, along with thinking about JT, out thoughts and prayers go out to Liam (an old poker friend of mine)and his wife, Katie, who are here while their young twins have some procedures. Liam and Co.- You are in our prayers.

Now back to watching some Tom & Jerry and quiet time. Hopefully more later.

Love to you all,
dct

Do as the text msg says and no one gets hurt!

So my brother, who will remain nameless - the one who works in high-end furniture and lives in Bath, ME - text messages me that "that blog isnt gonna write itself, ya know!" Joking, of course. But, fully true.

The reality is that there has been a lot going on today and we do want to share a bunch with you.

The bottom line is that James is doing better than he was yesterday. He's had his ups and his downs today. He is having trouble with his, er, poops. The nurses have been trying to alleviate this and hopefully it will "pass" soon.

On a more positive note the occupational, physical and speech therapists all worked on JT today. Despite JT's initial reluctance they were able to get him into a wheelchair and he went for his first post-op stroll around the unit. While he appeared unimpressed, I know that inside he was happy to see something other than the inside of the room.

During his therapies he picked out and ate M&Ms and, in a great sign of progress, he tried his darnedest to use his right hand/arm to eat ice cream! We came back and have had a good afternoon just hanging out.

To my surprise JT has been up for most of the day. He snoozed for a little bit while Jennifer and I got out and had a coffee with some friends from my office (Thank you CJT and Dad for "sitting"). I know that as the days go by J's level of grogginess will diminish as he gains strength. I just didn't expect today's level of alertness. It was a nice surprise and I suspect that he will sleep quite well tonight.

I can't express enough how much we appreciate all of your calls, emails, comments and texts. Believe me when I say we read and listen to each one of them. Just please be patient with us if we don't get back to you ASAP. Heck, as I type this I'm just now remembering that I never called my brother-in-law, Brian, back. Dude, I'm sorry about that. Also, we're certain that you understand that if tomorrow (Wednesday) we ask that no one visits the room. Some of you may have found that we put the visitor block up this afternoon - sorry about that. That's not to say you can't drop a note off at BBCH reception....but, we're in for a big day of therapy and the such and JT needs another day to just chill.

Again, thanks for the love and support. Love to you all.
dct

Neuro Update...Monday..

Yes, he's sticking his tongue out at the camera.

Dr. Wilson swung in just a while ago and tells us that the post-op MRI looked "superb" and that he "couldn't be happier." He mentioned that James' right arm motion will come back and that it was a side effect of him working in that area of the brain. He mentioned that every ounce of metabolism is going toward healing James' head and that we should expect the grogginess and that we can put the junk food to him. Most of the calories will be used to heal his head.

Dr. Wilson also confirmed that the tumor was the size of a peach. Yes, you read that right, a peach. Without question I'll never, ever look at a peach the same way again.

Oncology swung by to introduce themselves. Pathology is still out, but the new oncology doctor for the week wanted to introduce himself. Coming off of Dr. Wilson's visit, it was rather sobering. But the silver lining to that cloud is that the oncology doctor said that JT has overcome his first and biggest treatment challenge - tumor removal.

Physical, occupational and speech therapist each stopped in for only a moment. The phy/occ therapists moved JT to the chair and the speech therapist asked some questions and tried to get some words. They'll all be back tomorrow.

Lastly, I can't say enough about the nurses who have been by our side throughout. I'll have to post more about them later. But for now I want everyone to know that the nurses, techs and med students here in BBCH, SCU and Radiology are amazing. Just amazing.

dct

p.s please excuse any errors in spelling and grammar...I'm trying to do this quick.

Just Another Manic Monday....

Well, Dr. Deano Vis-something-or-other - Okay, so everyone here calls him Deano. Deano came by early this morning and checked on James. He said that he appears to be doing well. He's looked at the post-operative MRI and feels that there wasn't anything "funky". He also mentioned that Dr. James Wilson - the surgeon who led the team - may stop by today to chat.

James will have a CT scan later this week to see how the fluid is moving and/or collecting. This will give us a better indication as to how that fourth ventricle (the one that was blocked by the tumor) is working. But, as it stands, the shunt will remain in the back of James' head.

On today's docket for JT...physical, occupational and speech therapies. They want him out of bed- if only over to the chair. And we are pushing for some more words. I was able to get a "No" out of him last night.

Thanks to everyone for stopping by yesterday. Special thanks go out to Curtis, Ben, Ada, Tate and Riley. I know that it's tough for you kids to see all of that scary stuff. But understand that James really liked seeing each of you (and getting the presents.) If you're scared don't hesitate to talk to your folks. You didn't hear it from me, but, they're pretty smart like that and can answer some of your questions to make it a little less scary.

Thanks....

Late Sunday and I'm sitting here and wanted to say that words can't express enough about how grateful we are to all of you - friends and relatives and relatives of friends. Each of you has touched our family with your thoughts, prayers, visits, gifts and love. You are all making this easier. Thank you.

...and, James has made it out of the special care unit and back to his room at Barbara Bush.
dct

First words!

James spoke his first post-operative words..."I have to go to the bathroom." Sounds tiny, but after not hearing him speak after brain surgery...it's huge. Couldn't have asked for a better Father's Day present. Hearing the news actually made me speechless.

We'll continue to work on getting him to use words (as temporary muteness can be a side effect of such operations) and hopefully soon he'll be driving us mad with his chatter.

dct