First on the list, for our Hero this week was 'the body.' He continues to do very well, even after last week's big treatments. Always sharing and in an effort not to let his little brother get too big for his britches, Paul kindly shared his cold with Joe. But even the common cold is thus far finding JoJo a formidable foe as it doesn't seem to be hitting him as hard as it's hitting Paul. There isn't any fever thus far and it hasn't gotten to his chest, right now just manifesting itself in the form of the sniffles. Here is to prayers and positive thoughts that that is as far as it gets and goes away quickly - for both the boys.
Next on the docket for JoJo, was 'the mind.' The doc shared with Team Taylor that the next couple of months were going to be much easier on our Hero, she suggested going back to school as the blood levels would allow. That information coincided with a trip that took Mom and Joe near school and Joe asked if he could visit his class. Needless to say, he was welcomed like... well... a returning hero. His hunger for knowledge immediately piqued and he quickly asked Mom if she could leave so he could "work for a while." Back to it then professor...
Last on his list was 'the spirit' which showed itself in three ways. First, in the form of learning what makes this less than fun process a little more tolerable for JoJo. In a word - control. When you are always being told where to go and what to do, a little empowerment can go a long way. Whether it's determining whether he takes his medicine crushed or whole, take his temp in the ear or under the tongue or choosing what to eat - any control over this situation can be of the utmost importance. Second, Team Taylor has found that spirit is strengthened by a familiar voice and face in the face of Nurse Jean (sister of Mom's friend Jenny.) So comforting was her presence that Joe asked to 'stay' and if Jean could help him next time too. Finally, what is a strong spirit if you can't share it with others in need, which Joe did by playing a bit with Hayden, a new patient who seems to be just starting the process. (Hayden was greeted with uproarious laughter when he asked JoJo if he liked Star Wars.)
The schedule for the week is pretty short and hopefully easy with labs and Vincristine tomorrow (Wednesday the 30th.) But just a reminder, good vibes and prayers for an end to the cold bug! Stay tuned...
**UPDATE** 1:00AM - Tuesday: It looks like the cold bug had a little bit more bite than hoped and JoJo has a bit of a fever so he was admitted and will be in for 48 hours. Keep the prayers and positive thoughts coming...
**UPDATE #2** 7:30 - Wednesday: The hospital confirmed Paulie had generously shared his Influenza B with little Joe but it was caught early and treated with a bit of Tamaflu so he is still in the hospital but feeling better (playing vids with Dad) but served as a good reminder that even though JoJo's spirit is superhuman his young blood is still a little susceptible to all the chemo he'd been doing. But the good thing is he has a long break before the next set of treatment so his levels will be getting stronger and stronger each day! Keep the prayers coming while our Hero rests up a little in the hospital to keep clean and safe and puts the end to the flu bug...
Tuesday, January 29, 2008
Thursday, January 24, 2008
ENCORE! ENCORE!
No one can sing the praises of a boy louder than their Mom, here is a communique from our Hero's Mom:
This child is amazing.He really worked through that two weeks of intensive chemo really well. We were able to maintain control of vomiting and nausea, along with other aches and pains. He had to go in daily for a hour of hydration and then take the medicine for two weeks. It is over! So exciting.We went in yesterday for our PEG (sober shot in the hammy both legs) and Vincristine (IV Push). None of us got any sleep due to the anticipation of the hurt that was to come. We drugged him up good, and wouldn’t you just know it, they were running an hour late. We finally got in, completely sauced as we were hoping he would be for the PEG but was for his labs. No alarm on this one. He actually asked me at a point a half hour later. Did I get my shot yet? He had to lift up his shirt to check to see if his IV was in his port to remember. That’s the wonderful thing about that Adivan, it sauces you up, gets rid of a lot of the anxiety, makes you drunk, and also makes you forget.We had a great appointment with the dr. and she informed us that this next phase of treatment beginning roughly 2/6, after a couple of weeks he should be good to go on vacation, school and a variety of things he hasn’t been able to do since treatment is mainly oral meds and his levels should be “up”. He is doing really well. His unbelievable Italian/Greek hair is putting up a fantastic fight. Dry as a haystack, 1/4 left, but still hanging on for awhile longer. He knows now that it is going, so we feel better about that.We finally got to the clinic for the “shot” and were told that his levels were pretty low (to be expected after two long arguace rounds of chemo, and he needed to stay for a platelet transfusion and blood transfusion. (He was having headaches over the weekend that we attributed to the Cytrabine, but the Dr. actually said that is attributed to the low, low Hematocrit 16.2). Ummm, that adds an automatic 1.5 wait for the blood bank to bring his match and a mere 8 hours to the visit. We checked in at 930a and left at 745p. Long boring awful day.After he received the platelets they gave him his “shot”, he took it well as can be expected. They had me hold him face down into my neck so he couldn’t see the two nurses coming at him. When it was done through the tears he asked “why is everybody being mean to me”. The nurses got him a Star Wars ship. Unbelievable that they know just exactly what he likes and loves. Sort of tells you how much we are there.Today it was as if nothing was happening. Actually Paul has been sick with a fever, and he is the one that seems like he has been through the ringer. Joe is on top of his game. I guess it’s the new blood. He is “studdly” as dad says.We decided we more than likely (after looking at our treatment maps) that we probably just completed the longest hardest part of what Joe will have to face in the next few months. The “Study” arm of the phase will be over next week, and we are back to Standard treatment for the remaining 3 phases, Interim Maintenance, Delayed Intensification, and ahhh...Maintenance.Thank you to everyone for the prayers to our Joe and our family. They are truly working through him and us. We are so proud of Joe.
Stay tuned...
This child is amazing.He really worked through that two weeks of intensive chemo really well. We were able to maintain control of vomiting and nausea, along with other aches and pains. He had to go in daily for a hour of hydration and then take the medicine for two weeks. It is over! So exciting.We went in yesterday for our PEG (sober shot in the hammy both legs) and Vincristine (IV Push). None of us got any sleep due to the anticipation of the hurt that was to come. We drugged him up good, and wouldn’t you just know it, they were running an hour late. We finally got in, completely sauced as we were hoping he would be for the PEG but was for his labs. No alarm on this one. He actually asked me at a point a half hour later. Did I get my shot yet? He had to lift up his shirt to check to see if his IV was in his port to remember. That’s the wonderful thing about that Adivan, it sauces you up, gets rid of a lot of the anxiety, makes you drunk, and also makes you forget.We had a great appointment with the dr. and she informed us that this next phase of treatment beginning roughly 2/6, after a couple of weeks he should be good to go on vacation, school and a variety of things he hasn’t been able to do since treatment is mainly oral meds and his levels should be “up”. He is doing really well. His unbelievable Italian/Greek hair is putting up a fantastic fight. Dry as a haystack, 1/4 left, but still hanging on for awhile longer. He knows now that it is going, so we feel better about that.We finally got to the clinic for the “shot” and were told that his levels were pretty low (to be expected after two long arguace rounds of chemo, and he needed to stay for a platelet transfusion and blood transfusion. (He was having headaches over the weekend that we attributed to the Cytrabine, but the Dr. actually said that is attributed to the low, low Hematocrit 16.2). Ummm, that adds an automatic 1.5 wait for the blood bank to bring his match and a mere 8 hours to the visit. We checked in at 930a and left at 745p. Long boring awful day.After he received the platelets they gave him his “shot”, he took it well as can be expected. They had me hold him face down into my neck so he couldn’t see the two nurses coming at him. When it was done through the tears he asked “why is everybody being mean to me”. The nurses got him a Star Wars ship. Unbelievable that they know just exactly what he likes and loves. Sort of tells you how much we are there.Today it was as if nothing was happening. Actually Paul has been sick with a fever, and he is the one that seems like he has been through the ringer. Joe is on top of his game. I guess it’s the new blood. He is “studdly” as dad says.We decided we more than likely (after looking at our treatment maps) that we probably just completed the longest hardest part of what Joe will have to face in the next few months. The “Study” arm of the phase will be over next week, and we are back to Standard treatment for the remaining 3 phases, Interim Maintenance, Delayed Intensification, and ahhh...Maintenance.Thank you to everyone for the prayers to our Joe and our family. They are truly working through him and us. We are so proud of Joe.
Stay tuned...
Wednesday, January 16, 2008
The Force is STRONG with this one...
Our Hero continues to make big positive strides. He has weathered the most recent treatment cycle with limited nausea, no fever and no vomiting. Mom thinks it confirms that he was sick the last time he went in for treatment but it could also be aided by the military-like precision and timing of the nausea med dispersal.
But let us keep one thing clear, just because JoJo is tough as nails as continues on his quest to rid himself (and who knows, maybe the world) of this illness, it doesn't mean he always has to enjoy it. Needless to say, on Monday, he let his displeasure about getting poked known. But after tomorrow, Joe won't be 'accessed' again until next Wednesday - which will be a big poke day if the blood draw allows - it will include a PEG poke in each leg... without sedation. Mom isn't necessarily concerned about the pain, but more the memory and fear of it. So slip in an extra prayer for that.
Everyone is very pleased by how well Joe is doing and he is working with his therapist on trying to wrap his young mind around the idea that his hair will indeed come back and it's not a big deal. Plus some of the coolest people were bald... Michael Jordan, Yoda and of course Dad. So there is no need to let it weigh on his already burdened shoulders.
Onward our Hero marches - only two more Cytrabine days until late April/early May! That's got all of Team Taylor excited and means the next phase is just around the corner. As always, everyone on Team Taylor is thankful for your thoughts and prayers as they certainly seem to be helping JoJo tolerate this stuff so well. Please keep them coming! Stay tuned...
But let us keep one thing clear, just because JoJo is tough as nails as continues on his quest to rid himself (and who knows, maybe the world) of this illness, it doesn't mean he always has to enjoy it. Needless to say, on Monday, he let his displeasure about getting poked known. But after tomorrow, Joe won't be 'accessed' again until next Wednesday - which will be a big poke day if the blood draw allows - it will include a PEG poke in each leg... without sedation. Mom isn't necessarily concerned about the pain, but more the memory and fear of it. So slip in an extra prayer for that.
Everyone is very pleased by how well Joe is doing and he is working with his therapist on trying to wrap his young mind around the idea that his hair will indeed come back and it's not a big deal. Plus some of the coolest people were bald... Michael Jordan, Yoda and of course Dad. So there is no need to let it weigh on his already burdened shoulders.
Onward our Hero marches - only two more Cytrabine days until late April/early May! That's got all of Team Taylor excited and means the next phase is just around the corner. As always, everyone on Team Taylor is thankful for your thoughts and prayers as they certainly seem to be helping JoJo tolerate this stuff so well. Please keep them coming! Stay tuned...
Wednesday, January 9, 2008
Getting on with the keeping on...
Although our Hero felt more than a bit anxious about his poke on Monday (and let everyone on the 6th floor of Children's Hospital hear about it,) his numbers stayed steady where they needed to while improving in the areas that needed a boost (platelets - 308, hematocrit - 385, WBC - 9.8 and his ANC jumped from 436 to 1630!) So with those numbers, Joseph was cleared to jump back into the treatments yesterday and did very well.
He didn't have the tough vomiting and nausea like he did the last time which came as a great relief to everyone. JoJo actually enjoyed his time at the hospital as the captive audience of Mom, Yiayia and Aunt Kelly provided a lot of attention - he enjoyed it so much that he didn't want to leave as he knew home wouldn't be the same. (If that's not progress, who knows what is?!) Although the medical folks say he will definitely feel a bit of nausea in the days to come, Team Taylor will do their best to alleviate with a lot of hydration and a steady, precise and punctual administration of the anti-nausea meds.
Joe will be back at the hospital today for hydrating and Cytarabine for 3 days on, then 3 days off and then 4 days on. But the good news is there is no more heavy nausea inducing Cytoxan until perhaps April!
Mom is back to happily crossing treatments and medications off the calendar, Joe although very much back to his old fun, caring, loving self, is riding out the wobbly stomach on the couch but Team Taylor knows he's the rubber band man and bounces back quickly once the medication effects fade. He's a hero after all. :)
Keep the prayers and thoughts coming as always... stay tuned...
He didn't have the tough vomiting and nausea like he did the last time which came as a great relief to everyone. JoJo actually enjoyed his time at the hospital as the captive audience of Mom, Yiayia and Aunt Kelly provided a lot of attention - he enjoyed it so much that he didn't want to leave as he knew home wouldn't be the same. (If that's not progress, who knows what is?!) Although the medical folks say he will definitely feel a bit of nausea in the days to come, Team Taylor will do their best to alleviate with a lot of hydration and a steady, precise and punctual administration of the anti-nausea meds.
Joe will be back at the hospital today for hydrating and Cytarabine for 3 days on, then 3 days off and then 4 days on. But the good news is there is no more heavy nausea inducing Cytoxan until perhaps April!
Mom is back to happily crossing treatments and medications off the calendar, Joe although very much back to his old fun, caring, loving self, is riding out the wobbly stomach on the couch but Team Taylor knows he's the rubber band man and bounces back quickly once the medication effects fade. He's a hero after all. :)
Keep the prayers and thoughts coming as always... stay tuned...
Thursday, January 3, 2008
Resolution has renewed meaning in 2008
A hero's Christmas isn't much different than any other boy or girls Christmas, he played with his brother and his cousins - lots of Lego's, video games, movies, etc.. Needless to say the only place bristling with more activity was Santa's workshop. Although it was great having all the kids playing at Joe's house, it did expose some challenges that we'll need to be addressed as he continues to get better. Mainly, as Mom put it, JoJo has gotten 'a little emotionally spoiled.' He has pretty much had his run of things (and rightfully so) so when things didn't go his way he let it be known. Team Taylor has to give extra special thanks to Paul and all of Joe's cousins who are trying very hard to understand why the rules are a little bit different for Joseph at the moment.
If you all remember, our Hero was scheduled to kick off another round of treatment on New Year's Day. Well, although his Hematocrit was up to 35.4 (that means his body is producing red blood cells,) his platelets are up to 347 (and clotting on his own at safe levels) and his WBC is at an acceptable 2.8 his ANC fell to 436 which if you remember makes it tougher for JoJo to fight off the germs. Because of that, the treatment had to be pushed back to January 8th (if his ANC comes back up.) The nurses tell Team Taylor that this is par for the course. As his body starts doing it's own work again, levels will rise and fall and it requires a bit of patience and flexibility. Just a bit frustrating, as everyone would like to get this phase over as quickly as possible.
Joe continues to struggle a bit with nausea since his last treatment. A bit of vomiting and a pretty limited appetite has resulted in a loss of eight pounds. Even though he's looking a lot more like the Joe everyone is familiar with and he doesn't get too scared or upset about his stomach getting... well... upset... everyone would like to see the weight loss and the nausea stop.
Christmas morning Team Taylor also noticed that, according to his pillow, it's not just weight JoJo is losing, his hair is going too and by all accounts should be all gone by the end of January. Mom says it's thinning out evenly and looks like it just wants to come out. But unlike Dad's, our Hero's hair will be back. :)
Thanks to everyone for keeping Joe and Team Taylor in your thoughts and prayers, please keep it up! Here's to hoping the numbers are back up and JoJo is ready to start crossing off treatments on the calendar again. Stay tuned...
If you all remember, our Hero was scheduled to kick off another round of treatment on New Year's Day. Well, although his Hematocrit was up to 35.4 (that means his body is producing red blood cells,) his platelets are up to 347 (and clotting on his own at safe levels) and his WBC is at an acceptable 2.8 his ANC fell to 436 which if you remember makes it tougher for JoJo to fight off the germs. Because of that, the treatment had to be pushed back to January 8th (if his ANC comes back up.) The nurses tell Team Taylor that this is par for the course. As his body starts doing it's own work again, levels will rise and fall and it requires a bit of patience and flexibility. Just a bit frustrating, as everyone would like to get this phase over as quickly as possible.
Joe continues to struggle a bit with nausea since his last treatment. A bit of vomiting and a pretty limited appetite has resulted in a loss of eight pounds. Even though he's looking a lot more like the Joe everyone is familiar with and he doesn't get too scared or upset about his stomach getting... well... upset... everyone would like to see the weight loss and the nausea stop.
Christmas morning Team Taylor also noticed that, according to his pillow, it's not just weight JoJo is losing, his hair is going too and by all accounts should be all gone by the end of January. Mom says it's thinning out evenly and looks like it just wants to come out. But unlike Dad's, our Hero's hair will be back. :)
Thanks to everyone for keeping Joe and Team Taylor in your thoughts and prayers, please keep it up! Here's to hoping the numbers are back up and JoJo is ready to start crossing off treatments on the calendar again. Stay tuned...
Subscribe to:
Posts (Atom)
