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
Wednesday, May 13, 2009
Monday, May 11, 2009
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
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
Sunday, April 26, 2009
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!
Wednesday, March 4, 2009
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
Monday, March 2, 2009
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
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
Friday, February 27, 2009
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.
Sunday, February 1, 2009
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.
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.
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