Another good day and night for our returning hero, he successfully came off his IV and no illness from his treatments! Aunt Kristi arrived to help the packing and travelling portion of the day, which was a monumental undertaking when it looks like a ToysRUs exploded in the room. But being so brave and strong can take it out of you too and JoJo was a bit slow, a bit tired and a bit sad when he finally had some time to decompress upon returning home. Enter big brother Paul Tor, home from school ecstatic to see his little brother home and his family back in order. He had enough excitement and passion to reignite everyone. Just a big brother looking out for his family, a hero in his own right. After some play - Taylor brothers style, everyone enjoyed a fantastic dinner cooked up by Yiayia and Papa and finally off to snoozeville.
(On more personal news, and news that any one can truly understand, Joe was especially pleased to return to the comfort of his own bathroom where he was...uh... well... let's just call it a success. :) )
Joseph will have to head back for a simple blood draw tomorrow. (Which is easy for us to say, it's not us they are pricking with a needle so it may be an interesting ride.)
Thursday - a little heaven on Earth, home all day w/o out any of the hospital stuff. A respite well earned JoJo!
Friday is IV Vincristine and a Day 8 bone marrow test from the hip (while sedated) to see what those cells are up to and if they are doing as we all hope and pray they are. This will be a great milestone, especially if we find they are recessing which would mean not another bone marrow test until Day 28, if not, it will be back again on Day 14 for another test.
The Family is adjusting to life back at home - but happy to be doing so. (Especially Paul.) Big thanks to Papa for letting Yiayia stay for a little while - a mother's work is never done and that goes for Mom and Yiayia! Thanks Papa!
Keep the comments coming everyone - the family loves reading them, and as always keep the prayers and good vibes coming.
Stay tuned...
Tuesday, October 30, 2007
Monday, October 29, 2007
Joseph the Brave Marches On...
To the surprise of no one but to the great relief of all, our hero was, well... heroic again today. Despite being a little reticent once he realized the room he was headed to was the same as he's perevious treatment, Joseph, with the help of some 'spin lights' the nurses gave him to hold on his way, soldiered on and as Mom puts it 'he rocked.' Team Taylor also welcomed yet another member to the fold, friend and current team member Jenny Serres' sister who is a nurse at Children's was there to provide great reassurance and guidance. Mom and Dad think Jenny may have had something to do with Jean's arrival on the scene. :)
Joseph came out a little drowsy but doing well, outside of the grumbling in his stomach that we all know is ever present with JoJo. Unfortunately the hospital couldn't grant his wish for breakfast so a faithful Team Taylor member, already on her way to the hospital the medicine chart, made a quick pit stop at Denny's for hashbrowns, bacon and pancakes. Refueled and re-energized JoJo was ready... for some lunch. Then it was off for his echo. After it was nap time, and then fully energized and excited - he dove into the box of fun that was provided by his friends. Then... dinner of course, a little "Dumb and Dumber," taking his oral meds and then off to the land of nod for our hero.
Oh, and lest we not forget, while Joseph was off with Aunt Tina getting his echo, Mom and Dad had a long, un-interupted talk with the doctors and if all the tests go well and the reports stay positive - JoJo will be returning to Casa de Taylor tomorrow! This of course shifts Team Taylor into overdrives and training and dry runs are in full effect as we speak, preparing for a hero's homecoming.
Now we come to the requests we have for the rest of us Team Taylor members:
1. More prayers and positive thoughts. Keep it up!
2. Given Joseph's limited availability to visitors, a project is being undertaken to build a bit of a photo collage of JoJo's biggest fans... all of us. So if you would, please take a moment and find some pictures of Joe's friends, family, favorite times, etc. Please send them to Stefani Johnson at aquinoaopi@comcast.net.
For those that would prefer to send the old fashioned way...
Stefani Johnson
13215 NE 202nd CT.
Woodinville, WA 98072
As always, stay tuned and stay focused people! :)
Joseph came out a little drowsy but doing well, outside of the grumbling in his stomach that we all know is ever present with JoJo. Unfortunately the hospital couldn't grant his wish for breakfast so a faithful Team Taylor member, already on her way to the hospital the medicine chart, made a quick pit stop at Denny's for hashbrowns, bacon and pancakes. Refueled and re-energized JoJo was ready... for some lunch. Then it was off for his echo. After it was nap time, and then fully energized and excited - he dove into the box of fun that was provided by his friends. Then... dinner of course, a little "Dumb and Dumber," taking his oral meds and then off to the land of nod for our hero.
Oh, and lest we not forget, while Joseph was off with Aunt Tina getting his echo, Mom and Dad had a long, un-interupted talk with the doctors and if all the tests go well and the reports stay positive - JoJo will be returning to Casa de Taylor tomorrow! This of course shifts Team Taylor into overdrives and training and dry runs are in full effect as we speak, preparing for a hero's homecoming.
Now we come to the requests we have for the rest of us Team Taylor members:
1. More prayers and positive thoughts. Keep it up!
2. Given Joseph's limited availability to visitors, a project is being undertaken to build a bit of a photo collage of JoJo's biggest fans... all of us. So if you would, please take a moment and find some pictures of Joe's friends, family, favorite times, etc. Please send them to Stefani Johnson at aquinoaopi@comcast.net.
For those that would prefer to send the old fashioned way...
Stefani Johnson
13215 NE 202nd CT.
Woodinville, WA 98072
As always, stay tuned and stay focused people! :)
Treatment rolls on...
When last we left our hero, he had just successfully traversed his first course of treatment and although a bit tired, came through like a champ. Today Joseph (by Joe's request - we will be calling him by his full name - and of course we should - heroes need to have a formal moniker as well) will be having an intrathecal spinal of Cytarabine as well as a PEG Pegaspargase two intra-muscular thigh. Because the doctors are concerned his superhuman strength will be too much for the machines they use, Joseph will be mildly sedated. He would have preferred to have continued to play Xbox while it was being done but the player 2 controller ran out of batteries so he couldn't beat up on Dad anymore anyway so he figured he might as well catch a little shut eye while the doctors and nurses did what they needed to do. Everyone send some extra positive prayers and vibes - even for a hero of young JoJo's stature these treatments can be taxing and difficult.
Joseph's legend continues to grow and people from all over are flocking to see the hero in purpose his Uncle Father Gus and Aunt Kay flew in from San Francisco to bring their prayers to him in person. The only thing that out numbers the toys in Joseph's room are the blessings that are residing there - Team Taylor feels every bit of that so keep it all coming!
Speaking of Team Taylor it's important to point out that this is a team that is deep and strong. Whether it's Michelle Dahl bringing Halloween cheer, Kelli's cookies that must have some sort of cocaine based secret ingredient to explain their addictive nature, Aunt Tina spending the night to give Mom some well needed recharging rest, Papa personal catering work that has started to feed other families on the floor, coordination of a meds list for the maintenance months ahead, Mom's girlfriends for making her laugh when it seems impossible to do so, Big Brother Paul's inspiration by going out and hammering in 4 goals and one assist in his soccer game on Saturday, Dad's unshakable patience, Yiayia's stepping into make lunches, help with homework, breakfasts and dinners at casa de Taylor and of course Mom whose engine just refuses to slow down - we've said it before - this illness picked the wrong kid to mess with - not only because of him but the team he has.
Joseph's legend continues to grow and people from all over are flocking to see the hero in purpose his Uncle Father Gus and Aunt Kay flew in from San Francisco to bring their prayers to him in person. The only thing that out numbers the toys in Joseph's room are the blessings that are residing there - Team Taylor feels every bit of that so keep it all coming!
Speaking of Team Taylor it's important to point out that this is a team that is deep and strong. Whether it's Michelle Dahl bringing Halloween cheer, Kelli's cookies that must have some sort of cocaine based secret ingredient to explain their addictive nature, Aunt Tina spending the night to give Mom some well needed recharging rest, Papa personal catering work that has started to feed other families on the floor, coordination of a meds list for the maintenance months ahead, Mom's girlfriends for making her laugh when it seems impossible to do so, Big Brother Paul's inspiration by going out and hammering in 4 goals and one assist in his soccer game on Saturday, Dad's unshakable patience, Yiayia's stepping into make lunches, help with homework, breakfasts and dinners at casa de Taylor and of course Mom whose engine just refuses to slow down - we've said it before - this illness picked the wrong kid to mess with - not only because of him but the team he has.
Sunday, October 28, 2007
Now on JoJo's hit list: Chemo
Friday our hero began his first steps to beating Leukemia by starting his first round of chemotherapy. Not surprising to any of his biggest fans, Joe is did well and continues to do well. He woke up happy and smiley on Saturday and rolled up his sleeves for some real important work - bedside XBox play with with Dad (big thanks to Rick for making that happen,) major LEGO building construction, coloring in the coloring book Courtney gave him, admiring the pictures that Adrienne drew, playing with his new dog (no not a real one) that PT got him - (because afterall, every hero needs a sidekick) and just generally sifting through the mounds of toys that seem to be littering every inch of available space in his room.
JoJo continues to be very perplexed by the less than stellar food the hospital chooses and serves him. So the diet has been generously altered with the help of Paps "pasta hats," Nonnie's banana bread and a steady flow of popcorn. Also supplementing Joe's food is a set of medications - Dexamethasone, Vincristine, Allopurinol and Ceftazidime which will all help JoJo beat Leukemia.
Thank you all for the positive thoughts, prayers and the comments on the blog - please keep them all coming - it all helps fuel Joe (not as much as the pasta hats, banana bread and the popcorn but it definitely is a huge blessing. :))
JoJo continues to be very perplexed by the less than stellar food the hospital chooses and serves him. So the diet has been generously altered with the help of Paps "pasta hats," Nonnie's banana bread and a steady flow of popcorn. Also supplementing Joe's food is a set of medications - Dexamethasone, Vincristine, Allopurinol and Ceftazidime which will all help JoJo beat Leukemia.
Thank you all for the positive thoughts, prayers and the comments on the blog - please keep them all coming - it all helps fuel Joe (not as much as the pasta hats, banana bread and the popcorn but it definitely is a huge blessing. :))
Friday, October 26, 2007
Leukemia just made a big mistake.
Here begins the heroic tale of young Joe Taylor, a bespectacled five year old boy who faced down ALL Leukemia. It is here on these pages, that I will attempt to tell the events that unfold around he and his Mom, Dad, big brother Paul and his grandparents, aunts, uncles, cousins and friends (all proud and heroic in their own right)….
As Angie detailed in the email that explained how things had unfolded, Joe was diagnosed with Leukemia early last week and currently is taking up residence at Children’s Hospital where he immediately began a steady ‘diet’ of intravenous fluids to best prepare him for the first major set of treatment that is due to start very soon. But for all of those of us that know Joe, our hero is a fan of food and when you have a group of well-meaning and caring (but controlling) nurses and doctors not allowing you to eat what you want, when you want – this is a recipe for an unhappy and frustrated Joe. But with that ‘unpleasantness’ came some positive news when the tests confirmed that there were no current infections and no cancer present in his spine. A great piece of news to go along with the fact that the ALL Leukemia is the more treatable of the two types of Leukemia that Joe may have had.
But as we’ll see, this is as much a rollercoaster ride as anything and if food cops weren’t enough, these same doctors and nurses that are going to help him beat this disease, are also constantly poking and prodding him challenging his patience and normally jovial demeanor. But who can blame Joe, to the most of us reading this are adults (at least in age if not in maturity or intelligence,) the idea of comprehending a confusing disease and an equally confusing treatment plan would be (and is) a very tough and daunting thing to grasp. Now put yourself in the shoes of JoJo, just a few days ago he was playing LEGOS and Army Men and now he finds himself in a hospital room they won’t let him leave yet – his world has been turned on its ear and that’s been a tough thing for Joe to come to terms with yet. It’s a lot to wrap is arms around so with the help of his parents and the staff at Children’s they are working to find the right combination of medications and such to help Joe stay relaxed as well as pain free as possible. No man is an island people – not even our hero.
Another step in Joe’s preparation was a surgery that took place today that implanted a shunt will allow for easier and cleaner and more direct access for administering of treatment, fluids, etc.. Although Joe’s heart is big and strong, he’s still a growing boy and those veins are small and it’s not fun continually so this implant will be a good thing – plus it allows for easier playing of Xbox and army men without having a tube connecting tying down a little guy that does not enjoy being tied down.
So this brings us to the next steps, treatment will be beginning very soon (if it hasn’t already.) It is a fairly intensive set of first treatment that comes with a list of some potential side-effects that could be tough on JoJo – and of course therefore tough on all his family and friends. During this time, much to the sadness and frustration of big brother Paul, Joe will remain in the hospital. (On a side note, JoJo’s lucky to have such a great big brother – mine used to beat me up all the time.) Paulie, like the rest of us, wants Joe to come home very soon and that’s where we all can help a bit. As we all know, during the time of treatment Joe’s immune system is taking a bit of a pounding so he’s much more susceptible to virus, infection and etc. so for now keep the steady flow of prayers and positive thoughts coming! (Oh and if anyone can find a Vera Wang or Dolce-Gabbana sterile suit for Ang that would be great.)
Check back here regularly for updates on our JoJo’s battle and keep the thoughts and prayers coming!!!
P.S. Thanks to Jose Ocasio, the 82nd Airborne is currently discussing taking Joe on as an Honorary Member. We’re telling you Leukemia, you picked the wrong kid to mess with…
As Angie detailed in the email that explained how things had unfolded, Joe was diagnosed with Leukemia early last week and currently is taking up residence at Children’s Hospital where he immediately began a steady ‘diet’ of intravenous fluids to best prepare him for the first major set of treatment that is due to start very soon. But for all of those of us that know Joe, our hero is a fan of food and when you have a group of well-meaning and caring (but controlling) nurses and doctors not allowing you to eat what you want, when you want – this is a recipe for an unhappy and frustrated Joe. But with that ‘unpleasantness’ came some positive news when the tests confirmed that there were no current infections and no cancer present in his spine. A great piece of news to go along with the fact that the ALL Leukemia is the more treatable of the two types of Leukemia that Joe may have had.
But as we’ll see, this is as much a rollercoaster ride as anything and if food cops weren’t enough, these same doctors and nurses that are going to help him beat this disease, are also constantly poking and prodding him challenging his patience and normally jovial demeanor. But who can blame Joe, to the most of us reading this are adults (at least in age if not in maturity or intelligence,) the idea of comprehending a confusing disease and an equally confusing treatment plan would be (and is) a very tough and daunting thing to grasp. Now put yourself in the shoes of JoJo, just a few days ago he was playing LEGOS and Army Men and now he finds himself in a hospital room they won’t let him leave yet – his world has been turned on its ear and that’s been a tough thing for Joe to come to terms with yet. It’s a lot to wrap is arms around so with the help of his parents and the staff at Children’s they are working to find the right combination of medications and such to help Joe stay relaxed as well as pain free as possible. No man is an island people – not even our hero.
Another step in Joe’s preparation was a surgery that took place today that implanted a shunt will allow for easier and cleaner and more direct access for administering of treatment, fluids, etc.. Although Joe’s heart is big and strong, he’s still a growing boy and those veins are small and it’s not fun continually so this implant will be a good thing – plus it allows for easier playing of Xbox and army men without having a tube connecting tying down a little guy that does not enjoy being tied down.
So this brings us to the next steps, treatment will be beginning very soon (if it hasn’t already.) It is a fairly intensive set of first treatment that comes with a list of some potential side-effects that could be tough on JoJo – and of course therefore tough on all his family and friends. During this time, much to the sadness and frustration of big brother Paul, Joe will remain in the hospital. (On a side note, JoJo’s lucky to have such a great big brother – mine used to beat me up all the time.) Paulie, like the rest of us, wants Joe to come home very soon and that’s where we all can help a bit. As we all know, during the time of treatment Joe’s immune system is taking a bit of a pounding so he’s much more susceptible to virus, infection and etc. so for now keep the steady flow of prayers and positive thoughts coming! (Oh and if anyone can find a Vera Wang or Dolce-Gabbana sterile suit for Ang that would be great.)
Check back here regularly for updates on our JoJo’s battle and keep the thoughts and prayers coming!!!
P.S. Thanks to Jose Ocasio, the 82nd Airborne is currently discussing taking Joe on as an Honorary Member. We’re telling you Leukemia, you picked the wrong kid to mess with…
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