As noted in the last post, our Hero as been cleared and has begun the last of the intense treatment phases. This, as we all remember, involves a dramatic increase in medicine and treatment visits - not to mention side effects. Joe is doing well so far but is starting to feel the effects of the new and increased meds. His hunger is starting to build but it is being stifled a bit by the nausea that has reared its head. Team Taylor is investigating to see if this is a result of the Doxorubicin or just how the Doxorubicin reacts with the Dexamethasone (Mom, Dad and Nouna will chat with the doc about that when Joe goes in for his spinal methotrexate sedation and PEG.) It seems to be slowing a bit but Mom is getting the anti-nausea medication ready but it's a delicate balance as no one wants to see JoJo uncomfortable but endlessly taking pills isn't fun either.
But even with all that stuff our Hero had a great and very weekend. Although he didn't feel up to play in his baseball game on Saturday, he did have a great time watching his big brother Paul and cousin Daniel tear it up on the baseball diamond. JoJo had fun with cousin William, had a double sleepover Friday through Sunday with cousin Adrienne sleeping over and topped it all off with a fantastic Greek Easter Dinner at YiaYia and Papa's house that stuffed everyone with food in preparation for a week of treatment.
As always, keep the prayers and positivity coming and stay tuned for updates on this week’s treatment...
Tuesday, April 29, 2008
Wednesday, April 23, 2008
Quick Update!
Hot off the presses... or more acurately, fresh out of the labs... our Hero's ANC has climbed back up to 1104 so he has been cleared to start his treatments! Stay tuned...
UPDATE TO THE UPDATE:
As stated above Joe's numbers are going back up - along with the ANC improvement came word that his Hematocrit was up to 35.1, platelets to 180 and WBC to 3.1. So as stated above, the green light has been given to start the tough Delayed Intensification phase. But as Mom says, 'we can't finish it unless we start it first.'
During this phase he will be getting Vincristine on Wednesday's for three Weeks and Doxborubicin for three weeks on Wednesday as well. He gets a PEG shot in both legs Monday 4/29 and a IT Methotrexate sedation Monday as well. He gets a week off of meds beginning 5/14 to prepare for 5/21 the Cytoxan (1 day admit) and ARA-C, daily doses in the hospital for 4 days. He will also be taking oral chemo at this time he will start the cousin to Mecaptopurine-Thioguanine for 14 days 5/21. If everything stays on schedule our Hero will be done with Thioguanine 6/3 and 2 weeks off and begin Maintenance (as long as his numbers are 750 or above) for 3 years beginning 6/18/08. This entails quarterly IT Methotrexate sedations, daily mecaptopurine; 2x weekly Bactrim, 1 monthly Vincristine, and 2x-5days a month Dexamethasone.
As you could all guess, with all that nasty stuff going in that means an increase in steroids to keep JoJo's numbers up. That increase (a double dose until the morning of May 14th) is most likely going to pack a hunger and craving inducing wallop for which the medical team advised Team Taylor to brace itself. Efforts are being made to do just that by going low salt as well as working to keep Joe busy and occupied (including continuing to play baseball for as long as he can until it gets too uncomfortable.)
This from the desk of Mom:
"We are so pleased to begin this last phase of intensive treatment. We are so proud of Joe. The Nurses are marveling at how great he is doing and how good he looks. We pray that this next three weeks for him isn't utter torture and discomfort. But WE CAN DO IT!
Rollin' rollin' rollin'. I am very pleased today."
And as all know, when Mom and Joe are pleased - all of Team Taylor is pleased. So keep the prayers and positive thoughts coming! The homestretch begins, stay tuned...
UPDATE TO THE UPDATE:
As stated above Joe's numbers are going back up - along with the ANC improvement came word that his Hematocrit was up to 35.1, platelets to 180 and WBC to 3.1. So as stated above, the green light has been given to start the tough Delayed Intensification phase. But as Mom says, 'we can't finish it unless we start it first.'
During this phase he will be getting Vincristine on Wednesday's for three Weeks and Doxborubicin for three weeks on Wednesday as well. He gets a PEG shot in both legs Monday 4/29 and a IT Methotrexate sedation Monday as well. He gets a week off of meds beginning 5/14 to prepare for 5/21 the Cytoxan (1 day admit) and ARA-C, daily doses in the hospital for 4 days. He will also be taking oral chemo at this time he will start the cousin to Mecaptopurine-Thioguanine for 14 days 5/21. If everything stays on schedule our Hero will be done with Thioguanine 6/3 and 2 weeks off and begin Maintenance (as long as his numbers are 750 or above) for 3 years beginning 6/18/08. This entails quarterly IT Methotrexate sedations, daily mecaptopurine; 2x weekly Bactrim, 1 monthly Vincristine, and 2x-5days a month Dexamethasone.
As you could all guess, with all that nasty stuff going in that means an increase in steroids to keep JoJo's numbers up. That increase (a double dose until the morning of May 14th) is most likely going to pack a hunger and craving inducing wallop for which the medical team advised Team Taylor to brace itself. Efforts are being made to do just that by going low salt as well as working to keep Joe busy and occupied (including continuing to play baseball for as long as he can until it gets too uncomfortable.)
This from the desk of Mom:
"We are so pleased to begin this last phase of intensive treatment. We are so proud of Joe. The Nurses are marveling at how great he is doing and how good he looks. We pray that this next three weeks for him isn't utter torture and discomfort. But WE CAN DO IT!
Rollin' rollin' rollin'. I am very pleased today."
And as all know, when Mom and Joe are pleased - all of Team Taylor is pleased. So keep the prayers and positive thoughts coming! The homestretch begins, stay tuned...
Thursday, April 17, 2008
Patience is a virtue and learning from experience is good!
Team Taylor has learned many things on this journey, one of which is that schedules are kind of pointless and the only schedule or calendar that is needed is the lab results. The last week or so has been yet another reminder of that. After a lab that revealed a decreasing ANC of 695, our Hero's oral chemo meds were cut in half with the intention of returning to normal dosages after this week’s labs. Well, this week’s numbers revealed a 34.0 Hematocrit, 198 Platelets and a lower ANC of 289. So instead of pushing it the doctors suggested taking the week off in order to prepare for the start of the Delayed Intensification on April 23rd. Again, keeping in mind that that is dependent upon Joe avoiding illness and his ANC getting back up to 750.
How is all this reshuffling and variation affecting JoJo you ask? Well, simply put, it's not. Mom says that he's been a champ, including strutting into the hospital like he owns the place. We can all agree that if courage and bravery were currency, he'd own the hospital, the block it sits on and the city in which it resides. Our Hero has been the shining example of how to take pills and deal with multiple finger pokes. No complaints, no tears, no fear. He really is starting to take his Hero persona seriously.
But fret not extended Team Taylor members, JoJo's life hasn't been all blood draws and chemo treatments. As they say, you can take Joe out of a 'normal boy's life' but you can't take the 'normal boy's life' out of Joe. He's been playing baseball, running around with his big brother Paul, his cousins and his friends and had a fantastic trip to the awesome Great Wolf Resort water park. Unfortunately for Joseph, his efforts to convince Mom and Dad to allow him to quit school have fallen on deaf ears. That is a monster that even this Hero can't slay.
It has been fantastic to see the return of the kind, affectionate, inquisitive, loving and caring boy that everyone knows Joe to be. But as great as that's been, Team Taylor is lamenting the very real probability that when the aggressive treatments (50 days of high steroid doses, bi-weekly chemo and dealing with discomfort, trouble sleeping, insatiable cravings, etc.) return, the "Real JoJo" will disappear for a while. However, if there is another thing Team Taylor has learned is that the "Real JoJo" is fiercely resilient and will never be far.
So with that, Team Taylor prepares for next week and the start of the last tough phase of the treatment as well as Greek Easter. Now it's also important to realize for everyone else that the break isn't just over for Joe, it's over for all of us too - crank up those prayers and positive thoughts, the finish line of the hard part of the treatment is in site, but it's a steep home stretch. Stay tuned...
How is all this reshuffling and variation affecting JoJo you ask? Well, simply put, it's not. Mom says that he's been a champ, including strutting into the hospital like he owns the place. We can all agree that if courage and bravery were currency, he'd own the hospital, the block it sits on and the city in which it resides. Our Hero has been the shining example of how to take pills and deal with multiple finger pokes. No complaints, no tears, no fear. He really is starting to take his Hero persona seriously.
But fret not extended Team Taylor members, JoJo's life hasn't been all blood draws and chemo treatments. As they say, you can take Joe out of a 'normal boy's life' but you can't take the 'normal boy's life' out of Joe. He's been playing baseball, running around with his big brother Paul, his cousins and his friends and had a fantastic trip to the awesome Great Wolf Resort water park. Unfortunately for Joseph, his efforts to convince Mom and Dad to allow him to quit school have fallen on deaf ears. That is a monster that even this Hero can't slay.
It has been fantastic to see the return of the kind, affectionate, inquisitive, loving and caring boy that everyone knows Joe to be. But as great as that's been, Team Taylor is lamenting the very real probability that when the aggressive treatments (50 days of high steroid doses, bi-weekly chemo and dealing with discomfort, trouble sleeping, insatiable cravings, etc.) return, the "Real JoJo" will disappear for a while. However, if there is another thing Team Taylor has learned is that the "Real JoJo" is fiercely resilient and will never be far.
So with that, Team Taylor prepares for next week and the start of the last tough phase of the treatment as well as Greek Easter. Now it's also important to realize for everyone else that the break isn't just over for Joe, it's over for all of us too - crank up those prayers and positive thoughts, the finish line of the hard part of the treatment is in site, but it's a steep home stretch. Stay tuned...
Wednesday, April 9, 2008
On Target...
Our Hero continues to avoid any bumps in the road and is doing well - happy and busy! Between baseball practice, Legos, riding his bike and his scooter (not to mention a big trip today to Great Wolf Resort) - JoJo barely has time to be annoyed by taking his meds. Team Taylor hopes to have these positive signs affirmed by Joe's labs that are being done today.
If all goes well and everything remains on target, Joseph will re-engage the full treatments again on April 23rd - so needless to say, everyone is trying to really enjoy the break before it fires up again. Once the current phase is completed it will be on to the 50 day treatment phase that hopefully will start on time in mid-June. Although, Team Taylor has learned the up and down and somewhat unpredictable nature of JoJo's treatment schedule, everyone is hoping for a good long patch of smooth sailing so keep the prayers and vibes coming... Stay tuned...
If all goes well and everything remains on target, Joseph will re-engage the full treatments again on April 23rd - so needless to say, everyone is trying to really enjoy the break before it fires up again. Once the current phase is completed it will be on to the 50 day treatment phase that hopefully will start on time in mid-June. Although, Team Taylor has learned the up and down and somewhat unpredictable nature of JoJo's treatment schedule, everyone is hoping for a good long patch of smooth sailing so keep the prayers and vibes coming... Stay tuned...
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