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?

Home again...

....home again, jiggidy jig. We're back home! The crew up at BBCH really pushed hard to get James his meds posthaste and we were allowed to check out of the inn earlier this evening. While James is quite tired he handled all of the drugs, questions and interruptions like a champ. One of the big questions I had in the back of my mind going into this week was how he'd react to the new chemo drug - cyclophosphamide. Would he be allergic? Well, he's not. He took two rounds just fine!

I've said this before but I think that it bears repeating again. The crew up on pediatric inpatient floor deserves all the praise that could possibly be given. And then a little more. Inevitably, there are going to be kids and families spending their holiday up on the west end and it blows my mind how these fine folks, selflessly, make each kid feel as though they were king or queen of the world. On Christmas morning while I'll be lucky enough to wake up at home and opening presents in the warmth and comfort of my own living room, my thoughts will be with all the doctors, nurses, kids and families that will be up in the big house celebrating the holiday. I raise my nog to you all.

Okay, now about our busy day....On top of his meds, playing ball in the atrium and drop-ins by some friends and family James was visited by US Navy officers from BNAS, a triathlete in training for London 2012 and a number of ME State Troopers bearing gifts. Of it all, James was definitely most impressed with the fact that the Troopers all had both guns and handcuffs inside the hospital. And, of course, their jet black German Shepard K9 - aptly named, Chase - was pretty cool.

As promised here are a few more shots from Santa's special visit to room 636...

If I don't type again before the Santa's coursers fly, enjoy your holiday everyone!
'To the top of the porch! To the top of the wall!
Now dash away! Dash away! Dash away all!'
Love to you all....
dct

Christmas Chemo Time!

This week the Taylors find ourselves in back in Barbara Bush Children's Hospital (the infamous room 636) for James' last inpatient chemo treatment of 2008. JT checked into the big house at about 9am today and we hope to be heading back home on Christmas Eve Day.

This evening, little did James know but Santa got clearance to use the hospital's helicopter pad to pay a special visit. He waved to many kids but tonight - by special invitation- Santa's only stop was room 636 to see James and Jack. He brought only two presents with him. One for James and one for Jack. James can't figure out how the man in red knew he was even here. All of James' letters came from our home address! When I asked him if, maybe, he secretly wished that Santa would come visit him in the hospital he said "Yes". Needless to say, after a day of being sort of "down" because the playroom is closed (read: No xBox 360/Legos Star Wars game) James is still in shock....more pictures later....The beauty of this one is how Jack is oblivious to Santa's presence once his present is opened.

Only two more shopping days left! I better get started, eh?!?
dct

Snowy Sunday....

So, the boys are resting (JT is getting very fatigued lately) and Old Man Winter is bearing down on us for the third time in under two weeks. I love the new blanket of snow because it covers all the leaves that I didn't have time to rake! But, damn, don't I hate cleaning up after the storms. I'm pretty sure that we can safely assume that we're in for a white Christmas here in Portland.

Anyhow, I'm hanging out flipping through iTunes and photos and figured that I'd post a few random shots for no other good reason than because I can. So here you are.

Hope you all are safe, warm and well.

dct

Not unlike a manager's line up card. Just keeping it all straight, at times, can be mindboggling.

Dinner's "appetizers". Thanks to the medication Gods JT takes everything well.

...and so it does.

For whatever reason a few years ago I began sawing off a little wafer of our Christmas trees. Not sure if it's the recession hitting our little house or just my poor tree selection abilities - but the trunk diameter is on disturbingly downward path. Gonna have to fix that in '09.

Happy Holidays

Hey there folks....

The Taylors are doing well and getting ready for Christmas. James is holding steady. We've noticed that lately he's been becoming more and more fatigued. I suspect that his treatments, all the season's excitement and a nice coating of snow to play in is catching up with him. So, we watch him carefully and are trying to get him to bed early and take naps when he wants.

I just want to take a moment to thank you all for your lovely cards, calls and emails. It's wonderful to know that we have such amazing family, friends and co-workers. Each and everyone of you has helped us cope with a pretty turbulent 2008. I raise my glass to each of you and toast to a happy, healthy and healing 2009.

I promise more of an update (with photos) in the very,very near future. James goes into the hospital on Monday (12/22) and is slated for discharge Christmas Eve. This particular chemo cycle is only four weeks so we'll find ourselves back in January. While more of a break away would be nice we're comforted in the fact that the middle of January will have two milestones. First is that JT will eclipse the half way point in his total treatments (radiation and chemo). The second is that JT will be done the first main cycle of chemo treatments - or better put he'll be 1/3 of the way done with chemo!

For now though we'll concentrate on the short term goals of getting into the hospital, getting out of the hospital and watching for Rudolph's red nose!

Take care and love to you all.

dct

2 Down, 7 To Go

So while Don takes a break tonight (and yes for the past month too) from the blog, I'll fill you in on the last week. James had round 2 of chemo on Monday, Nov. 10th into Tuesday the 11th. No major differences from the last go around except that the chemo started 4 hours earlier this time, which meant James got to sleep just a wee bit more overnight, and that he got to play more Star Wars Legos on the XBox.

No major differences also means...so far...no puking. Mom & Dad & the nurses are thrilled.

Speaking of that, I'll go back just a bit and cover the last month briefly. James handled the chemo like a champ. There was no explicitly chemo-related puking...always good, especially since there can be a delayed nausea effect with 1 of the 3 drugs he received. His blood counts stayed up high enough on all levels to keep us out of the clinic for the 3 week break in between chemo rounds. Also, knock on wood, no infections. So he's been going to school, keeping his OT & PT appointments and trying to keep busy with some of the normal busy life stuff of a 6 year old.

There was apple-picking, scarecrow-making, leaf-raking, playing with friends, Halloween, and a cousin's birthday party. Of course, he was Darth Vader for Halloween (thank you DeeDee), and collected his fair share of candy which he has unknowingly shared with his mother.

James is thrilled that one of his favorite nurses, Kristen, gave him an early Christmas present. Her kids had outgrown them, so James is now the happy inheritor of over 1,500 Pokemon cards. (Ada, Tate & Bella...we've told him to share!) "It's like Christmas for me today," he said. "Remember that on Dec. 25th," I thought to myself as he's also been busy making up "wish lists" out of the numerous unsolicited toy catalogs that seem to be flowing into this house daily.

James went to school for most of the remainder of the week, but a phone call came from the school nurse Friday after lunch. Turns out all the chemo meds & side effects were not his biggest problem this week. The kid can beat all that...apparently, it's a double ear infection he couldn't escape this week! Throw another medicine into the mix; what's one more, right?!

Truly, he's been a trooper through all of it so far. There are things he definitely does not like, but he gets through it in his own ways and then moves on to the next thing a 6 year old boy might care about.

Thank you to all who have continued to ask about how James is doing, and those of you who have kept him and us in your thoughts and prayers. I know it's still almost a couple of weeks away, but we realize we have so much to be thankful for this Thanksgiving, and will have you all in our thoughts as well. - Jenn