Friday, February 29, 2008
The Charge Begins Anew...
After what Mom describes as the "longest month of their lives," great news came in on our Hero's most recent tests. His ANC went up to 1344, Hematocrit to 31.6 and his platelets were up to 244! With the docs go ahead Joe had a treatment done on Wednesday and now just medication (lots of pills) for the next two months. After which JoJo will be going in to see the doc for a blood test and then two weeks later in for some treatment with sedation. Keep the thoughts and vibes coming!!! Stay tuned...
Thursday, February 14, 2008
The Climb begins again!
As was noted in the update to the last post, our Hero's ANC numbers jumped up to 270 which was fantastic news. Joe's hematocrit was up again (32.6) and his platelets were up to a healthy 291. Although his WBC remains low at 1.5, the hope and expectation is that as this is determined by a formula which includes the ANC, this will improve exponentially with the improvement of his ANC. Mom very appropriately describes the improvement as a definining moment as it marks the beginning of the 'Interim Maintenance' phase which is a real sign of progress that has felt a long time in the coming. Additionally, when JoJo's numbers reach the appropriate levels it will be time to bid adieu to the "study" as the next courses of treatments will be the standard courses. Let's keep those great vibes and prayers coming to get all the numbers up into not only acceptable but very healthy ranges!!! Stay tuned...
**UPDATE** Joe's numbers went up a bit more in his last lab work. His ANC now up to 348, which isn't where it needs to be to start the next cycle of treatments. But it was up enough for Mom to 'lift the bubble' a bit and let our Hero get some good quality play time in with his cousins and big brother Paul over the weekend. Stay tuned...
**UPDATE** Joe's numbers went up a bit more in his last lab work. His ANC now up to 348, which isn't where it needs to be to start the next cycle of treatments. But it was up enough for Mom to 'lift the bubble' a bit and let our Hero get some good quality play time in with his cousins and big brother Paul over the weekend. Stay tuned...
Monday, February 11, 2008
The Dog Days of Winter
We all got a little spoiled. Everything had been going so swimmingly that we expected to have nothing but glowingly positive results and reports. But if Leukemia was all peaches and creme, our Hero wouldn't be going through all the stuff he's been going through for the last five or six months. So it is with that that Team Taylor has encountered a slight slowing to the momentum that has been gaining so much speed. JoJo's numbers have been yo-yo-ing a little bit over that last couple of days. Specifically we can see the ANC go from 75 to 138 to the 99 he's remained steady at for the last two labs. (Keep in mind 200 is the magic number to remain a bit more solid for fighting up bugs, bacteria and the like.) The medical staff component of Team Taylor is not concerned about it as they report that this is common to see this after an intense chemo session followed by a bad flu bug.
That being said, the family component of Team Taylor would do virtually ANYTHING to see those numbers go up. First and foremost, we want them up so we can all be a bit less concerned about Joe being susceptible to any bugs or viruses (not to mention to stop the stress of going in for labs every two days.) Joseph is no dummy, getting poked with needles isn't fun and since he is feeling fine he doesn't understand the necessity for all this nasty business. Additionally all the people working in the toy factories all over the world would like to see JoJo's numbers go up so they can stop working double shifts that are required to keep the toys coming to reward our Hero for his bravery. (Mom is not a big fan of using the toys as behavior modification tool but every hero has one soft spot and with as angry and upset as Joe has been with this stuff, sometimes it's all that works.)
So with that, for the sake of our Hero, his family, his friends, yourself and the frantic toy workers all over the world, please roll up your prayer and positive vibe sleeves for our Hero, let's get those numbers back up so he can get a bit of a break from the hospital trips and everyone else can rest a bit easier knowing he's a bit more resistent to the bugs that having been hammering everyone else. The next trip to check the numbers happens on Tuesday so stay tuned!
**QUICK UPDATE** - The numbers are in and our Hero has gone from an ANC of 99 to an ANC of 278. Way to go JoJo!
That being said, the family component of Team Taylor would do virtually ANYTHING to see those numbers go up. First and foremost, we want them up so we can all be a bit less concerned about Joe being susceptible to any bugs or viruses (not to mention to stop the stress of going in for labs every two days.) Joseph is no dummy, getting poked with needles isn't fun and since he is feeling fine he doesn't understand the necessity for all this nasty business. Additionally all the people working in the toy factories all over the world would like to see JoJo's numbers go up so they can stop working double shifts that are required to keep the toys coming to reward our Hero for his bravery. (Mom is not a big fan of using the toys as behavior modification tool but every hero has one soft spot and with as angry and upset as Joe has been with this stuff, sometimes it's all that works.)
So with that, for the sake of our Hero, his family, his friends, yourself and the frantic toy workers all over the world, please roll up your prayer and positive vibe sleeves for our Hero, let's get those numbers back up so he can get a bit of a break from the hospital trips and everyone else can rest a bit easier knowing he's a bit more resistent to the bugs that having been hammering everyone else. The next trip to check the numbers happens on Tuesday so stay tuned!
**QUICK UPDATE** - The numbers are in and our Hero has gone from an ANC of 99 to an ANC of 278. Way to go JoJo!
Tuesday, February 5, 2008
Slowly but surely...
The focus for our Hero and Team Taylor remains the lab numbers. On Saturday Joe's numbers went down a little to 30ANC and .8 WBC. But never one to remain complacent JoJo's numbers seem to be making the climb upward now with the next set of labs happening tomorrow (Wednesday the 6th). Everyone keep your fingers crossed that the ANC climbs into that safer 200 range so that Mom can stop holding her breath.
Another thing everyone would like to see go up a bit is Joe's weight. What sounds like a luxury to the rest of us has gotten to be a bit of a concern for Team Taylor. Although he would look great in all the most recent fashions on the runway, everyone would much rather see him get back up to his "healthy, climbing trees, wrestling Paul and rolling in the mud" weight. Mom says if Legos were edible, this wouldn't even be a concern. But since they aren't, the focus is on getting JoJo feeling healthier (i.e. no flu) so his famous appetite returns.
Well it appears as if Mom and Dad's concern about getting our Hero to take his antibiotics was warranted. Whether it's his declarations of that he feels better and doesn't need it or his assertion that he does not care too much for his physician, the administration of the meds has been a challenge to say the least. So, who do you turn to when Joe refuses? Well, big brother Paul of course! Paul has begun to lead by example by taking placebos of water with cherry juice with JoJo. As the song says, 'he ain't heavy, he's my brother.' It's a good thing pride is not an exhaustable resource because if it was Mom and Dad would be all out of it because both of these boys are worthy of tons of it.
Just a reminder, lots of prayers and positive vibes that our Hero's numbers continue to climb along with his weight. As always, stay tuned...
Another thing everyone would like to see go up a bit is Joe's weight. What sounds like a luxury to the rest of us has gotten to be a bit of a concern for Team Taylor. Although he would look great in all the most recent fashions on the runway, everyone would much rather see him get back up to his "healthy, climbing trees, wrestling Paul and rolling in the mud" weight. Mom says if Legos were edible, this wouldn't even be a concern. But since they aren't, the focus is on getting JoJo feeling healthier (i.e. no flu) so his famous appetite returns.
Well it appears as if Mom and Dad's concern about getting our Hero to take his antibiotics was warranted. Whether it's his declarations of that he feels better and doesn't need it or his assertion that he does not care too much for his physician, the administration of the meds has been a challenge to say the least. So, who do you turn to when Joe refuses? Well, big brother Paul of course! Paul has begun to lead by example by taking placebos of water with cherry juice with JoJo. As the song says, 'he ain't heavy, he's my brother.' It's a good thing pride is not an exhaustable resource because if it was Mom and Dad would be all out of it because both of these boys are worthy of tons of it.
Just a reminder, lots of prayers and positive vibes that our Hero's numbers continue to climb along with his weight. As always, stay tuned...
Monday, February 4, 2008
Casa de Taylor > Hospital
On Thursday our Hero returned home from his little 'vacation' at the hospital for his flu bug. The docs said that it is actually safer for him at home than it would be to stay at the hospital. Confirming something JoJo already knew, home is better than the hospital. A feeling he made very visible by spreadng his arms and happily declaring to his brother, "I'm home Paul!" Although happy to be home, Team Taylor was not relishing the task of getting Joe to take is three antibiotics twice a day.
As if Mom didn't feel anxious enough when Joseph got the flu and had the low numbers (38 ANC and .9 WBC) from the treatment, word came down that cousin Brock had gotten one chicken pock (if that is indeed the singular form of chicken pox) from the vaccination he received. A flurry of phone calls ensued to first determine who had 'touched Brock' (Blanca, Nonnie and Dad were guilty) and then a flurry of phone calls to the docs to determine the risk to Joe. The medical team doesn't seem too terribly concerned and didn't think there was a significant chance of contagion or transmission. But just in case, keep that in mind when saying your prayers for our Hero.
JoJo and Team Taylor will be heading into get labs done ever couple of days until his ANC and WBC return to acceptable levels so, as always, stay tuned...
Tuesday, January 29, 2008
Mind, Body and Spirit
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...
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...
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...
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