Our Hero continued his great week, going out and mixing with the masses a bit more. Well, OK, not quite the 'masses' but he is getting out of the house a lot more for things other than treatment and such. Included in that was Christmas at the Taylor's which, Joe like any other boy or girl, loved. That is until it was over... but then was quickly reminded he'd get to do it all over again at Yiayia and Papa's on Christmas Eve.
JoJo remains active - playing and running around. His appetite is still a bit small but the doctors say that is very normal for this part of his treatment. For those that know Joe, there is little fear that that appetite of his will return. :) Although his blood work numbers were a bit flat (28.9 Hematocrit and an ANC of 864) the doc reassured Team Taylor that this is good in two ways, the blood work indicates the effect that the treatment is having and it no longer measures how good he's feeling, that can now be indicated by Joseph's behavior, mood, activity level, etc.. All these things indicate the treatment continues to be effective and our Hero is feeling better because the cancer is no longer present, which reduces pain, lets your body work with you as opposed to against you and allows him much more energy. Oh, and getting of 'The Juice' (steroids) helped alleviate many of the symptomatic side effects as well. But even with all that caution remains the better part of valor in order to ensure Joe doesn't catch any bugs or anything.
The plan going forward will kick back off on New Year's Day (rather than the 28th of December due to the hospital being all booked up.) These treatments will make his levels go down, so this time off will be important to allow him to build up his strength for the next battle. It'll be a schedule of January 2nd - January 5th and then three days off and then back on for another four days of treatment January 9th through the 12th. Then JoJo will be all done with Consolidation and it will be on to the Interim Maintenance which should be more manageable with a lessening of medication and a more standard approach in the study. The phase after that is Delayed Intensification (which is much like Consolidation) but Team Taylor is ready!
All are looking forward to Christmas, being around family and being happy - all of which takes on renewed meaning for Team Taylor this year. All the best to all the family and friends and extended team members of Team Taylor, have a very happy holiday and remember Joe in your thoughts and prayers. Stay tuned...
Saturday, December 22, 2007
Monday, December 17, 2007
'Tis the Season...
Mom put it best in a recent communique from Taylor Manor:
Well Joseph Daniel Taylor went missing sometime in late September and returned this Saturday to his home in Kirkland.
Complete 360 Steroids wore off? Cancer is not present in the body? Body is on the up and up from the transfusion?
He has been running, playing with his toys, getting in sword fights, starting army guy wars, playing with his guys, chasing his cousins the whole nine yards. He has been told to “settle down”, and “quiet down” on several occasions both Saturday and Sunday. He wanted to join us for church, was the first to take communion and then wanted to join his class on the stage for the Christmas play at church. Good happy times over here with a weekend like that.
There is no gift that could be put under the tree that could rival that bit of information for sure! All of this is even more impressive after a big but successful day on Friday when everything went great, although it did seem to take forever. But our Hero celebrated the best way he knew how by preparing putting on a video game exhibition for Jen and Ericka on Friday... all the while preparing himself for Christmas at Nonnie and P.T.'s that will be taking place today.
As far as next steps in the treatment, Joe has an anti-pneumonia pill on Monday and Tuesday and then a spinal Methotrexate and IV Vincristine push on the 20th and then it's a full break until December 28th when the stronger treatments kick in again with two rounds of 1x Cycolphosphamide and the two weeks of F-M Cytarabine. For those keeping score at home, this was a tough one last time, but Team Taylor has not been sitting idly by and have learned the lessons - this time more IV hydration and nausea meds will be utilized to help ease things again.
Everyone is looking forward to Christmas, Mom had a great birthday (she says the world is always a better place after some time with Dad/some shopping and a trip to the spa with her nearest and dearest friends.) Keep the prayers and thoughts coming for more good momentum and positive response to the treatment!
Well Joseph Daniel Taylor went missing sometime in late September and returned this Saturday to his home in Kirkland.
Complete 360 Steroids wore off? Cancer is not present in the body? Body is on the up and up from the transfusion?
He has been running, playing with his toys, getting in sword fights, starting army guy wars, playing with his guys, chasing his cousins the whole nine yards. He has been told to “settle down”, and “quiet down” on several occasions both Saturday and Sunday. He wanted to join us for church, was the first to take communion and then wanted to join his class on the stage for the Christmas play at church. Good happy times over here with a weekend like that.
There is no gift that could be put under the tree that could rival that bit of information for sure! All of this is even more impressive after a big but successful day on Friday when everything went great, although it did seem to take forever. But our Hero celebrated the best way he knew how by preparing putting on a video game exhibition for Jen and Ericka on Friday... all the while preparing himself for Christmas at Nonnie and P.T.'s that will be taking place today.
As far as next steps in the treatment, Joe has an anti-pneumonia pill on Monday and Tuesday and then a spinal Methotrexate and IV Vincristine push on the 20th and then it's a full break until December 28th when the stronger treatments kick in again with two rounds of 1x Cycolphosphamide and the two weeks of F-M Cytarabine. For those keeping score at home, this was a tough one last time, but Team Taylor has not been sitting idly by and have learned the lessons - this time more IV hydration and nausea meds will be utilized to help ease things again.
Everyone is looking forward to Christmas, Mom had a great birthday (she says the world is always a better place after some time with Dad/some shopping and a trip to the spa with her nearest and dearest friends.) Keep the prayers and thoughts coming for more good momentum and positive response to the treatment!
Wednesday, December 12, 2007
Keeping the momentum rolling...
So far so good with the treatments this week. Whether it's due to no Cytoxan this times, the extra IV fluids, larger dosage of the anti-nausea meds or that our Hero was a bit under the weather last time - this week's treatment have been much easier on Joe. These things along with a long blood transfusion gave JoJo lots of energy which equated to the return of the rambunctious little man we all know and love. (It even resulted in a bit of smiling/giggling/flirting with the nurses - which was a first as normally our Hero has been all business when it comes to treatment.)
The blood work this week came back a little low (hence the transfusion) but all of that is completely to be expected given all the chemo. But even with all the treatment, Joe's ANC remained above 1000 which helps fight off the germs. So everyone keep the prayers coming that the treatments go well this week (Friday is a big one - Spinal Methotrexate - sedation, Vincristine - IV push and PEG muscular leg shots - while sedated) and that the next set of blood work shows a bit of a bounce back. Let's keep it going! Stay tuned...
The blood work this week came back a little low (hence the transfusion) but all of that is completely to be expected given all the chemo. But even with all the treatment, Joe's ANC remained above 1000 which helps fight off the germs. So everyone keep the prayers coming that the treatments go well this week (Friday is a big one - Spinal Methotrexate - sedation, Vincristine - IV push and PEG muscular leg shots - while sedated) and that the next set of blood work shows a bit of a bounce back. Let's keep it going! Stay tuned...
Monday, December 10, 2007
You can't keep a good Hero down...
After a bout of fever and some nausea our Hero started to bounce back as the week went on, energy elevated, the giggle meter started to tip into the red and even some of that JoJo fire we've all come to know and love flashed in the form of some brother-on-brother conflict. (Mom never thought she'd be happy to see that happen.)
The high point of the week was a trip to Lynnwood to Wights, where Joe, chief ornament and nutcracker analyst, loved looking around the store (hands stuffed in pockets per Dr. Mom's orders) telling everyone what one's he liked. It was great to get out on a day trip like that - it's been a while and hopefully will be something that will be happening more and more as Joseph gets stronger and stronger and STRONGER. In the meantime, JoJo will keep focusing his attention and strength on healing (and a little bit on the Xbox and the Nintendo DS video games.)
As far as meds and treatment goes, Joe continues to take his Mecapurine (anti-nausea medication,) Bactrim (anti-pneumonia medication) but no steriods! Joe didn't want any asterisks next to the records he plans on setting so opted for getting off 'the juice.' :) Seriously, they think Joseph's 'moon face' will disappear after about two weeks and his stomach has already gone down a lot and he's lost four pounds. The docs would prefer he not lose so much just yet. Sheesh! Make up your mind medical staff!!! The Italians say it best - Madone!
Friday was the treatment day as usual and started calmly and quietly until the numbing cream was applied and our Hero is no dummy, he knows that means a poke is imminent. Yiayia and big brother Paul both knew it was going to be a 'loud ride' to the hospital. A little "Mission Impossible" movie action in the car helped calm things until he saw sign of the cart and the JoJo siren was turned on for the two 'child life specialists' and a 'poker' (who Mom is convinced will be asking to be moved to another case next time.) But then calm set in and Nonie arrived after the poke and didn't understand the stories because she was witnessing a very calm and collected little man. After the back poke, flu shot, hydration (for the Cytrabine) he had to stay a bit longer than normal but didn't mind at all as his grandmothers were providing a good audience for his Nintendo DS mastery. Finally, it was off to "Johnny Rockets" for some lunch and although Joe didn't eat much he did enjoy the new scenery.
Fingers are crossed for the weekend and today's therapy and the chemo that accompanies it. It's the hope of everyone that the hydration done on Friday will really help the nausea. The count is on for January 18th when Joe and Team Taylor can move past this phase of the treatment.
Joe's blood work indicated his blood was tolerating the increased 'chemo blasting' from last week and his Hematocrit is at 24.4 (any closer to 20.0 and he'll go in for a bit of an 'oil change' next week - aka a blood transfusion.) His ANC was 1545 which is still great to fight off any germs with which he may come into contact.
As a final note, Team Taylor wanted to spend out some special props to an object that has come to be known by all as "Creamy." "Creamy" is JoJo's blanket and he and "Creamy" are inseparable - and "Creamy's" reputation proceeds him as even the nurses say hello to him when he comes in with Joe. All hail Joe the Hero and his faithful "Creamy."
Keep the prayers and positivity coming for a good week of treatment. Each day brings another 'x' on the treatment calendar! Stay tuned...
The high point of the week was a trip to Lynnwood to Wights, where Joe, chief ornament and nutcracker analyst, loved looking around the store (hands stuffed in pockets per Dr. Mom's orders) telling everyone what one's he liked. It was great to get out on a day trip like that - it's been a while and hopefully will be something that will be happening more and more as Joseph gets stronger and stronger and STRONGER. In the meantime, JoJo will keep focusing his attention and strength on healing (and a little bit on the Xbox and the Nintendo DS video games.)
As far as meds and treatment goes, Joe continues to take his Mecapurine (anti-nausea medication,) Bactrim (anti-pneumonia medication) but no steriods! Joe didn't want any asterisks next to the records he plans on setting so opted for getting off 'the juice.' :) Seriously, they think Joseph's 'moon face' will disappear after about two weeks and his stomach has already gone down a lot and he's lost four pounds. The docs would prefer he not lose so much just yet. Sheesh! Make up your mind medical staff!!! The Italians say it best - Madone!
Friday was the treatment day as usual and started calmly and quietly until the numbing cream was applied and our Hero is no dummy, he knows that means a poke is imminent. Yiayia and big brother Paul both knew it was going to be a 'loud ride' to the hospital. A little "Mission Impossible" movie action in the car helped calm things until he saw sign of the cart and the JoJo siren was turned on for the two 'child life specialists' and a 'poker' (who Mom is convinced will be asking to be moved to another case next time.) But then calm set in and Nonie arrived after the poke and didn't understand the stories because she was witnessing a very calm and collected little man. After the back poke, flu shot, hydration (for the Cytrabine) he had to stay a bit longer than normal but didn't mind at all as his grandmothers were providing a good audience for his Nintendo DS mastery. Finally, it was off to "Johnny Rockets" for some lunch and although Joe didn't eat much he did enjoy the new scenery.
Fingers are crossed for the weekend and today's therapy and the chemo that accompanies it. It's the hope of everyone that the hydration done on Friday will really help the nausea. The count is on for January 18th when Joe and Team Taylor can move past this phase of the treatment.
Joe's blood work indicated his blood was tolerating the increased 'chemo blasting' from last week and his Hematocrit is at 24.4 (any closer to 20.0 and he'll go in for a bit of an 'oil change' next week - aka a blood transfusion.) His ANC was 1545 which is still great to fight off any germs with which he may come into contact.
As a final note, Team Taylor wanted to spend out some special props to an object that has come to be known by all as "Creamy." "Creamy" is JoJo's blanket and he and "Creamy" are inseparable - and "Creamy's" reputation proceeds him as even the nurses say hello to him when he comes in with Joe. All hail Joe the Hero and his faithful "Creamy."
Keep the prayers and positivity coming for a good week of treatment. Each day brings another 'x' on the treatment calendar! Stay tuned...
Tuesday, December 4, 2007
Even Heroes have tough days...
After riding an extended streak of relatively incident-free days, our Hero hit a little bump in the road when late last week he woke with a bit of a fever. Admittedly the bump was a bit more significant for Mom and Dad as this has been the first fever Joe has run since the start of his journey. The fever was on and off so not too terribly troublesome but to be on the safe side JoJo spent the day/night in the hospital on Friday where he slept almost all the way from 2pm to 9am Saturday morning. Joe's roomate was an 11 year old boy with a brain tumor who was very sick so needless to say, Team Taylor left with renewed perspective and an odd feeling of gratitude that Joe's illness is being treated and he continues to respond well.
The remainder of the weekend was spent in the friendly confines of Taylor manor, relaxing on the couch, snoozing and watching movies. Sunday and Monday also involved a couple of more trips to the hospital for Cytarabine treatments but now there is a break before it's back for a spinal and more Cytarabine on Friday - and Cytarabine daily for the 3 days after that as well. A Hero's work is never done.
Speaking of responding, Joseph had his first case of vomiting after his treatment of both IV Cytarabine and Cyclophosomide. After which he very quickly notified Mom that Dad will need to be getting him a new Xbox game for his efforts. Can't argue that logic.
Joe's fever continues to come and go but the doctors aren't too terribly concerned because his daily tests have shown that the fever is not bacterial and it appears that the fever may be just a bit of a reaction to the Cytarabine which does have a history of having some "flu-like symptoms" that serve as side-effects. Team Taylor is treating our Hero with Tylenol every 4-6 hours, alternating it with the nausea medication.
There is a break on the horizon though, as Joe will get to be free of the treatment (minus the Friday spinal sedation Mothotrexate treatment) from 12/11 to 12/28. Happy Holidays indeed! An additional piece of good news, as of Sunday JoJo is off the steriods and it has resulted in a 75% reduction to his stomach and he's lost 1.5lbs.
While Mom crosses the dayst of treatment off the calendar, keep the prayers coming that Joe doesn't suffer much with the nausea, fever, etc.. Although he still isn't much for complaining or whining, sometimes Joe's placid silence can be just as deafening. All are used to seeing our Hero flying around with his cape flapping behind him, it's not a fun or easy thing to see him dragging a bit so say an extra prayer and send extra positive vibes to Team Taylor.
Stay tuned...
The remainder of the weekend was spent in the friendly confines of Taylor manor, relaxing on the couch, snoozing and watching movies. Sunday and Monday also involved a couple of more trips to the hospital for Cytarabine treatments but now there is a break before it's back for a spinal and more Cytarabine on Friday - and Cytarabine daily for the 3 days after that as well. A Hero's work is never done.
Speaking of responding, Joseph had his first case of vomiting after his treatment of both IV Cytarabine and Cyclophosomide. After which he very quickly notified Mom that Dad will need to be getting him a new Xbox game for his efforts. Can't argue that logic.
Joe's fever continues to come and go but the doctors aren't too terribly concerned because his daily tests have shown that the fever is not bacterial and it appears that the fever may be just a bit of a reaction to the Cytarabine which does have a history of having some "flu-like symptoms" that serve as side-effects. Team Taylor is treating our Hero with Tylenol every 4-6 hours, alternating it with the nausea medication.
There is a break on the horizon though, as Joe will get to be free of the treatment (minus the Friday spinal sedation Mothotrexate treatment) from 12/11 to 12/28. Happy Holidays indeed! An additional piece of good news, as of Sunday JoJo is off the steriods and it has resulted in a 75% reduction to his stomach and he's lost 1.5lbs.
While Mom crosses the dayst of treatment off the calendar, keep the prayers coming that Joe doesn't suffer much with the nausea, fever, etc.. Although he still isn't much for complaining or whining, sometimes Joe's placid silence can be just as deafening. All are used to seeing our Hero flying around with his cape flapping behind him, it's not a fun or easy thing to see him dragging a bit so say an extra prayer and send extra positive vibes to Team Taylor.
Stay tuned...
Subscribe to:
Posts (Atom)
