No news is no news. No news on the test results yet but should be hearing something any minute. Our Hero has been relaxing and saving some energy (not even wasting his energy for conversation - he'll let the tests do the talking for him) for what we are sure will be a big celebration when the results arrive. Although he's been pretty fatigued and bloated and swollen from the steriods (the general consensus is that he's looking about 8 months pregnant which is big but the docs say he'll look full-term by the end of the 28 days.)
In an effort to relieve some of the discomfort for the distended stomach, etc. from the steriods - everyone (led by big brother Paul) are working very hard to cut out as much salt as they can. JoJo has requested everyone join the 'salt strike' with him - sheesh it's not enough that he gets himself healthy, he is trying to get everyone else healthy too... or maybe it's just the salt-free unhappy loves company. It seems to have helped some but he's still a bit uncomfortable. But even with all of the change Team Taylor has not kept him from his precious cheese or when SOMEONE cracks and lets him have some BBQ chips (i.e. MOM.) But we can't blame her for that too much - would any of you be able to deny a hero his chips? I think not.
Although he's a bit too uncomfortable to play video games - he has indulged his creative side a bit and done some art and some puzzles. It's exciting to all of Team Taylor when the Mighty Joe rises to 'get his puzzle on!'
UPDATE!!! UPDATE!!! UPDATE!!!
THE TESTS ARE IN AND TO NO ONE'S SURPRISE BUT TO EVERYONE'S UNADULTERATED JOY, OUR HERO, JOSEPH, AKA JOJO, AKA JOE, AKA THE MIGHTY JOE, HAS GONE DOWN FROM 98% LEUKEMIA BLASTS IN HIS MARROW TO.... DRUM ROLL... 1%. YEP YOU READ THAT RIGHT, IN A MERE 2 WEEKS JOJO HAS JOINED THE RAPID RESPONDER CLUB! THANKS TO ALL FOR THE PRAYERS AND THOUGHTS BUT THERE IS MORE WORK TO BE DONE SO KEEP IT ALL COMING.
SPEAKING FOR EVERYONE - WE COULDN'T BE MORE PROUD OF YOU JOE. VIVA JOJO!
Wednesday, November 14, 2007
Saturday, November 10, 2007
Test Day
To no one's surprise our Hero continues to be baffled by the seemingly arbitrary times in which people refuse to allow him to eat. Yesterday he was on food lockdown in preparation for his treatment and tests and made no secret of the fact that it did not please him and it was not fair. Can't blame him. Although a majority of the morning was spent wearing a hunger induced scowl, it was briefly lifted when Aunt Kristi came for a visit with the new "Lego Star Wars" game for the Xbox. Boys and their toys.
It was off to the hospital at noon for the days events, starting with the labs. Everyone agrees it's great to be accessed in order to prevent the 'poking' and 'touching.' Joe, establishing his personal space, shared a new request with many of the folks who needed to work with him, "You need to ask me if you touch my body." Indeed they do JoJo. Let it be noted that Joe's rule may be that you need to ask before touching him, Mom and everyone else's rule is that you had better be thoroughly sanitized (and that includes chairs, tables, door handles, handrails, etc. Not only does this illness not stand a chance, germs' days are numbered as well. Team Taylor is ridding the world of germs - one handi-wipe at a time.
As for the tests, thanks to the transfusion, our Hero's hematocrit levels were up to 34.1. Everyone had hoped that the transfusion would bring his attitude and energy back to 'ol' Joe' levels, but it hasn't quite gotten there... yet. He is definitely engaging more with his toys and video games (you know, the important stuff) but he gets worn out easily. His ANC levels continue to be low at 1071 but not dangerously low. The doc, however, did state (with a smile on her face) that she was pleased to see Joseph's marrow was beginning to create new red blood cells.
The visit with Dr. Thompson wen well too as they continue to educate the family more and more on Joe's type of leukemia - ALL as well as more about the clinical study that they are a part of - which will include some genetic testing due in next week. The study uses the same medicines but just more of them - depending upon with 'arm' of the study you are randomized into. Team Taylor also learned that the genetic test and specifically the chromosome results are very important, explaining that extra or duplicate chromosomes are a VERY good thing. It's optimal to have 55 chromosomes and children that show rapid remission by Day 28 and 55 chromosomes have a 95%+ cure rate and permanent remission. Bring on the chromosomes and the rapid remission!!!
After the doc it was off to curtain #4 to get Joe his Vinicristine treatment and then wait for the sedation for the bone marrow draw. Mom wonders whether they will make the mistake of putting our verbose Hero in a curtained room again after he was not shy about voicing his displeasure with the speed at which things were moving... not to mention that he still had not eaten... which quite obviously "wasn't fair because he works harder than anyone else." Again, you can't argue with the guy. So in an effort to reassure him, Mom confirmed that she will make sure his fry portion from Burgermaster was bigger this time. Done and done JoJo. After all the tests and sedation and treatment, our hungry Hero shrugged off the recovery room and drunkenly walked out of the hospital under his own power. Nothing can keep this guy from his fries.
Mom and Dad were ready for some real wine and were able to celebrate Sandy's 60th birthday while Aunt Tina stepped in and provided Joe some entertainent (i.e. his cousins.) A special thanks goes out to Ericka and Maui for taking some of the kids out a movie and dinner to allow the excitement at a managable level for Joe after a long day.
The weekend should be a relaxing one that will include a little trip up to Cle Elum to check out the progress on the cabin and then back home for some R and R after a busy but productive and overall pretty positive week.
OK class, we all have our homework now - prayers and positive thoughts for great test results, plenty of chromosomes, no germs and not having to go back to the hospital until November 16th for a measly port poke and a vinicristine treatment. Dismissed!
It was off to the hospital at noon for the days events, starting with the labs. Everyone agrees it's great to be accessed in order to prevent the 'poking' and 'touching.' Joe, establishing his personal space, shared a new request with many of the folks who needed to work with him, "You need to ask me if you touch my body." Indeed they do JoJo. Let it be noted that Joe's rule may be that you need to ask before touching him, Mom and everyone else's rule is that you had better be thoroughly sanitized (and that includes chairs, tables, door handles, handrails, etc. Not only does this illness not stand a chance, germs' days are numbered as well. Team Taylor is ridding the world of germs - one handi-wipe at a time.
As for the tests, thanks to the transfusion, our Hero's hematocrit levels were up to 34.1. Everyone had hoped that the transfusion would bring his attitude and energy back to 'ol' Joe' levels, but it hasn't quite gotten there... yet. He is definitely engaging more with his toys and video games (you know, the important stuff) but he gets worn out easily. His ANC levels continue to be low at 1071 but not dangerously low. The doc, however, did state (with a smile on her face) that she was pleased to see Joseph's marrow was beginning to create new red blood cells.
The visit with Dr. Thompson wen well too as they continue to educate the family more and more on Joe's type of leukemia - ALL as well as more about the clinical study that they are a part of - which will include some genetic testing due in next week. The study uses the same medicines but just more of them - depending upon with 'arm' of the study you are randomized into. Team Taylor also learned that the genetic test and specifically the chromosome results are very important, explaining that extra or duplicate chromosomes are a VERY good thing. It's optimal to have 55 chromosomes and children that show rapid remission by Day 28 and 55 chromosomes have a 95%+ cure rate and permanent remission. Bring on the chromosomes and the rapid remission!!!
After the doc it was off to curtain #4 to get Joe his Vinicristine treatment and then wait for the sedation for the bone marrow draw. Mom wonders whether they will make the mistake of putting our verbose Hero in a curtained room again after he was not shy about voicing his displeasure with the speed at which things were moving... not to mention that he still had not eaten... which quite obviously "wasn't fair because he works harder than anyone else." Again, you can't argue with the guy. So in an effort to reassure him, Mom confirmed that she will make sure his fry portion from Burgermaster was bigger this time. Done and done JoJo. After all the tests and sedation and treatment, our hungry Hero shrugged off the recovery room and drunkenly walked out of the hospital under his own power. Nothing can keep this guy from his fries.
Mom and Dad were ready for some real wine and were able to celebrate Sandy's 60th birthday while Aunt Tina stepped in and provided Joe some entertainent (i.e. his cousins.) A special thanks goes out to Ericka and Maui for taking some of the kids out a movie and dinner to allow the excitement at a managable level for Joe after a long day.
The weekend should be a relaxing one that will include a little trip up to Cle Elum to check out the progress on the cabin and then back home for some R and R after a busy but productive and overall pretty positive week.
OK class, we all have our homework now - prayers and positive thoughts for great test results, plenty of chromosomes, no germs and not having to go back to the hospital until November 16th for a measly port poke and a vinicristine treatment. Dismissed!
Thursday, November 8, 2007
A little bit of rest and a refill...
Like a boxer getting ready for a fight, Joe laid very low yesterday. Part in preparation for today's event (transfusion) and part from just feeling pretty worn down. Hindsight being what it is, our little man probably needed the transfusion last Friday, but we'll mark that one up in the lesson learned column. Along with rest, our Hero used a combination of BBQ chips (his new favorite food) and cheddar cheese (of which he has been having some really intense cravings - one such craving that hit him at 1am. But hey, when a hero needs to eat, he needs to eat.)
Today had JoJo a little scared given that the last time in was a bit painful - who wants pain after all. But much to everyone's relief, Team Taylor is rapidly putting into place the tricks of the trade and Joe himself admitted that "it didn't hurt today." Hopefully a couple more successes like that and the anxiety around those trips will lessen a bit.
The transfusion took about four hours and went smoothly but by the end of the process Joe was already starting to feel better. It's a wonder what a good oil change can do for a growing boy. He was off the couch and re-introducing himself to his toys. A welcome sight to all.
Our normally cherubic little man is, thanks to the steriods, becoming even more so. Mom says she's worried his cheeks are getting so big he may just tip over. Joe continues to weather the pain like a champ and has experienced some nausea but no vomiting. The first line of defense is working well but in the event that it stops working, Mom has another line of defense which will help too.
That brings us all to the big day tomorrow. Below you'll find your schedule for when and where to point your prayers and positive thoughts:
12:30pm - Appt with Dr. Thompson
1:30pm - Vincristine Treatment to dole out a beatdown on the remaining bad cells
2:30pm - Sedation for his 3rd bone marrow lumbar puncture (As painful as that sounds, Mom and Dad know the real challenge will be keeping our Hero out of the BBQ chips and cheddar cheese starting at 7am - no food.) But on the brightside, this will allow Frito-Lay and the dairy industry a couple of hours to replenish before JoJo returns to get his fill.
So there, we all have our orders. We'll most likely have the weekend to continue to say our prayers and positive thoughts that the numbers come back as we hope and expect next week. Viva JoJo!
Today had JoJo a little scared given that the last time in was a bit painful - who wants pain after all. But much to everyone's relief, Team Taylor is rapidly putting into place the tricks of the trade and Joe himself admitted that "it didn't hurt today." Hopefully a couple more successes like that and the anxiety around those trips will lessen a bit.
The transfusion took about four hours and went smoothly but by the end of the process Joe was already starting to feel better. It's a wonder what a good oil change can do for a growing boy. He was off the couch and re-introducing himself to his toys. A welcome sight to all.
Our normally cherubic little man is, thanks to the steriods, becoming even more so. Mom says she's worried his cheeks are getting so big he may just tip over. Joe continues to weather the pain like a champ and has experienced some nausea but no vomiting. The first line of defense is working well but in the event that it stops working, Mom has another line of defense which will help too.
That brings us all to the big day tomorrow. Below you'll find your schedule for when and where to point your prayers and positive thoughts:
12:30pm - Appt with Dr. Thompson
1:30pm - Vincristine Treatment to dole out a beatdown on the remaining bad cells
2:30pm - Sedation for his 3rd bone marrow lumbar puncture (As painful as that sounds, Mom and Dad know the real challenge will be keeping our Hero out of the BBQ chips and cheddar cheese starting at 7am - no food.) But on the brightside, this will allow Frito-Lay and the dairy industry a couple of hours to replenish before JoJo returns to get his fill.
So there, we all have our orders. We'll most likely have the weekend to continue to say our prayers and positive thoughts that the numbers come back as we hope and expect next week. Viva JoJo!
Wednesday, November 7, 2007
Our Hero's Journey Continues...
Tuesday started with a trip into the hospital for the labs and lessons have been learned and tricks shared to avoid some of the challenges from previous trips - specifically the utilization of numbing cream for the impending 'poke.' Team Taylor was under the belief that this trip was going to be a brief one - a blood draw and then back home. But another lesson being learned is, these doctors and nurses, although amazing, can be sneaky so after the draw Joe had to stick around to make sure a doctor's visit, transfusion or other things didn't need to be done. This, along with the port being accessed via IV for the hour wait, did not please Joseph. After a bit of time of letting everyone now he was not pleased with how things were going (Mom calls it his siren) he eventually figured it might be a bit more tolerable if he just took a bit of a nap with Mom, Non and Yiayia.
As those that know him know, sometimes the task of getting JoJo to turn off the siren can be a tough one and it took it out of the Mom brigade a bit but a familiar face popped in - Chris Duff. Mr. Duff it turns out is the individual responsible for selling the equipment that is going to help heal our hero. Team Taylor has ALL the bases covered.
After a bit longer they came in with the results, and although he is still above the spot that would require a transfusion, Joe's Hematocrit has remained a bit flat which can result in some lethargy and irritability - which Mom and Dad have noticed a bit (NO ONE can blame him for feeling those things.) So that being said, the decision making department of Team Taylor (i.e. Mom and Dad and the medical staff,) will convene to decide when a transfusion will take place to give our Hero a bit of a boost. Again, this is not only not a rare thing in treatment, it is often part of the process. The odds are that this will take place on Thursday.
On the way out to the car to head home, the long awaited call regarding JoJo's bone marrow test arrived. Here is our report card:
10/22 - Diagnosis - Hero marrow contained 98% Leukemia Blasts
11/2 - After 7.2 Days of Treatment - Hero marrow contained 28% Leukemia Blasts
Although this sounds like a pretty rapid response to me, to be considered in "Rapid Remission" the Leukemia Blasts need to be at 5%. The reward for lopping 70% of the Leukemia Blasts in his bone marrow? Another bone marrow sedation and test on Friday, 11/9. Again, not doubting their brilliance because we love the doctors and nurses, but they are sneaky. They notified Team Taylor that our Hero would still qualify for the rapid responder path after this Friday's test (Day 14) or even by Day 28. So to sum up - for the rest of the week our Hero will be having a transfusion, an appt. with Dr. Thompson, a round of Vinicristine Chemo and then the sedation and bone marrow test. Kind of makes your work week look like a vacation doesn't it?
If there has been one advantage to this it's that Joseph has been able to endulge the competive eater that exists inside him as the treatment results in a fairly insatiable (even more than usual) appetite. This (along with the steriods - these are legal and will not affect JoJo's home run chase) has resulted in a bit of a distended belly and some chubby cheeks and round face. But if ANYONE looks good with that - it's the handsome Hero, Joe. So mangia JoJo, mangia!
Well, as he has this whole time, our Hero has grit his teeth and taken it to this illness. Keep all the thoughts and prayers coming that he continues to be... well... heroic. Mom and Dad and all the family can't thank you enough or tell you all how lucky they feel to have you. So keep it up everyone!!!
As always, stay tuned...
As those that know him know, sometimes the task of getting JoJo to turn off the siren can be a tough one and it took it out of the Mom brigade a bit but a familiar face popped in - Chris Duff. Mr. Duff it turns out is the individual responsible for selling the equipment that is going to help heal our hero. Team Taylor has ALL the bases covered.
After a bit longer they came in with the results, and although he is still above the spot that would require a transfusion, Joe's Hematocrit has remained a bit flat which can result in some lethargy and irritability - which Mom and Dad have noticed a bit (NO ONE can blame him for feeling those things.) So that being said, the decision making department of Team Taylor (i.e. Mom and Dad and the medical staff,) will convene to decide when a transfusion will take place to give our Hero a bit of a boost. Again, this is not only not a rare thing in treatment, it is often part of the process. The odds are that this will take place on Thursday.
On the way out to the car to head home, the long awaited call regarding JoJo's bone marrow test arrived. Here is our report card:
10/22 - Diagnosis - Hero marrow contained 98% Leukemia Blasts
11/2 - After 7.2 Days of Treatment - Hero marrow contained 28% Leukemia Blasts
Although this sounds like a pretty rapid response to me, to be considered in "Rapid Remission" the Leukemia Blasts need to be at 5%. The reward for lopping 70% of the Leukemia Blasts in his bone marrow? Another bone marrow sedation and test on Friday, 11/9. Again, not doubting their brilliance because we love the doctors and nurses, but they are sneaky. They notified Team Taylor that our Hero would still qualify for the rapid responder path after this Friday's test (Day 14) or even by Day 28. So to sum up - for the rest of the week our Hero will be having a transfusion, an appt. with Dr. Thompson, a round of Vinicristine Chemo and then the sedation and bone marrow test. Kind of makes your work week look like a vacation doesn't it?
If there has been one advantage to this it's that Joseph has been able to endulge the competive eater that exists inside him as the treatment results in a fairly insatiable (even more than usual) appetite. This (along with the steriods - these are legal and will not affect JoJo's home run chase) has resulted in a bit of a distended belly and some chubby cheeks and round face. But if ANYONE looks good with that - it's the handsome Hero, Joe. So mangia JoJo, mangia!
Well, as he has this whole time, our Hero has grit his teeth and taken it to this illness. Keep all the thoughts and prayers coming that he continues to be... well... heroic. Mom and Dad and all the family can't thank you enough or tell you all how lucky they feel to have you. So keep it up everyone!!!
As always, stay tuned...
Monday, November 5, 2007
And now we wait... for a bit longer...
Patience is a virtue they say so it looks like we are all going to have to be a bit more virtuous as the scheduler said it may be as late as Wednesday that the test results would be back. But that's OK, it just gives us all a bit more time to say our prayers and send our posive vibes for rapid remission but even more than that that we all prepare ourselves for whatever may lay ahead. Our Hero used his quiet weekend that was punctuated by the moments of energy and even a brief trip outside - which made Mom and Dad nervous but to soothe their nervous he just watched his play. As Joe told Blanca of his weekend of measured visits and play, it was obvious by the smile on his face that it was a good weekend for our Hero.
From the 'it runs in the family' department, JoJo is exhibiting a lot of the iron tenacity that exists in both families. An example is he has been experiencing a bit of nausea but really just chooses to tough it out, refusing to acknowledge that he's feeling anything. Just a reminder, he's five years old... we may need to invent a new word to describe a hero of this stature. Although on occasion he puts on a bit of the 'sad and tired show' for Mom and Yiayia, as soon someone under five feet tall comes in the room the act goes out the window. You can take the JoJo out of the playgroup for a while, but you can never take the playgroup out of the JoJo. Plus - adults are boring, even adults know that.
Keep the prayers, positive thoughts, great comments, etc. coming... Team Taylor is growing each day!
Stay tuned...
From the 'it runs in the family' department, JoJo is exhibiting a lot of the iron tenacity that exists in both families. An example is he has been experiencing a bit of nausea but really just chooses to tough it out, refusing to acknowledge that he's feeling anything. Just a reminder, he's five years old... we may need to invent a new word to describe a hero of this stature. Although on occasion he puts on a bit of the 'sad and tired show' for Mom and Yiayia, as soon someone under five feet tall comes in the room the act goes out the window. You can take the JoJo out of the playgroup for a while, but you can never take the playgroup out of the JoJo. Plus - adults are boring, even adults know that.
Keep the prayers, positive thoughts, great comments, etc. coming... Team Taylor is growing each day!
Stay tuned...
Friday, November 2, 2007
And now we wait...
Well, the big testing day came and went and our Hero, to the surprise of no one, courageously met the challenge. The day had it's share of bumps and surprises - including an adhesive bandage that had formed a supernatural bond to Joseph. Just goes to show, that even inanimate objects can't get enough of this guy! But thanks to the directing of Super Nurse (and Team Taylor member) Jean the situation was resolved and the sticker was sent on it's way.
On the positive side, we were very pleasantly treated with the news that it turned out JoJo didn't need a blood transfusion after all which was great but resulted in a loooong wait for the tests to take place. That is until another surprise surfaced, unbeknownst to Team Taylor, our Hero had another spinal treatment to get out of the way - which is exactly what he did. This kid is unflappable and he handled it like a champ... again.
But while all parties waited for the treatment to start, friend and nurse sister, Jenny Serres visited bringing a few blankets she had made for the Brothers Taylor, and then gave Mom some adult time to chat. Her visit and presents were greatly appreciated. Unfortunately for our Hero, beating the illness isn't all he hungers for, he also hungered for french fries but couldn't eat until everything was done - much to his chagrin. Who would have thought one of his most difficult challenges through this would have been the food related stuff... uhh... wait... probably all of us thought that. JoJo loves his sustenance. But when you get served lemon, you make lemonade - and our ingenious Joe is using these periods of down time, etc. to really start to learn to read time. At this rate, he may just go ahead and cure the illness on his own. Genius.
Finally, after the treatment and the bone marrow tests were done (results will most likely be on tap for Monday... rapid remission, rapid remission, rapid remission...) Joe groggily woke from his sedation to ask... "is it time to eat? Where's Yiayia? Oh yeah, at home making dinner?" You've got to admire his focus. After a few more moments to come to, JoJo was free to go, although still a little doped up and wobbly he assured his Mom that he hadn't had any wine or beer, just Sprite. After a stop at Burgermaster for some chicken nuggets and fries (which never stood a chance) the crew headed home where they were quickly greeted by Santa Hardie (although a slimmer Santa) who dropped off a brand new Nintendo Wii. Which Mom says may have excited Dad more than the boys. Once our Hero is back to full superhuman strength, there may need to be a party in the Taylor Arcade.
As always, not enough can be said for the support and teamwork that's taken place so far - it's impact is felt by all. But stay focused and ready everyone - keep the thoughts and prayers coming - we all better be ready for whatever comes next, because you know our Hero will be ready.
Stay tuned...
On the positive side, we were very pleasantly treated with the news that it turned out JoJo didn't need a blood transfusion after all which was great but resulted in a loooong wait for the tests to take place. That is until another surprise surfaced, unbeknownst to Team Taylor, our Hero had another spinal treatment to get out of the way - which is exactly what he did. This kid is unflappable and he handled it like a champ... again.
But while all parties waited for the treatment to start, friend and nurse sister, Jenny Serres visited bringing a few blankets she had made for the Brothers Taylor, and then gave Mom some adult time to chat. Her visit and presents were greatly appreciated. Unfortunately for our Hero, beating the illness isn't all he hungers for, he also hungered for french fries but couldn't eat until everything was done - much to his chagrin. Who would have thought one of his most difficult challenges through this would have been the food related stuff... uhh... wait... probably all of us thought that. JoJo loves his sustenance. But when you get served lemon, you make lemonade - and our ingenious Joe is using these periods of down time, etc. to really start to learn to read time. At this rate, he may just go ahead and cure the illness on his own. Genius.
Finally, after the treatment and the bone marrow tests were done (results will most likely be on tap for Monday... rapid remission, rapid remission, rapid remission...) Joe groggily woke from his sedation to ask... "is it time to eat? Where's Yiayia? Oh yeah, at home making dinner?" You've got to admire his focus. After a few more moments to come to, JoJo was free to go, although still a little doped up and wobbly he assured his Mom that he hadn't had any wine or beer, just Sprite. After a stop at Burgermaster for some chicken nuggets and fries (which never stood a chance) the crew headed home where they were quickly greeted by Santa Hardie (although a slimmer Santa) who dropped off a brand new Nintendo Wii. Which Mom says may have excited Dad more than the boys. Once our Hero is back to full superhuman strength, there may need to be a party in the Taylor Arcade.
As always, not enough can be said for the support and teamwork that's taken place so far - it's impact is felt by all. But stay focused and ready everyone - keep the thoughts and prayers coming - we all better be ready for whatever comes next, because you know our Hero will be ready.
Stay tuned...
Thursday, November 1, 2007
A Hero's work is never done...
Yesterday was a very busy day yesterday for Joseph, starting with inviting Mom to sleep with him at about 3am and then waking up with a bit of leg pain which is completely normal with the treatment and with the illness but it was nothing that some pain meds, some heating pads, getting propped up in Mom and Dad's big bed and cartoons, couldn't handle. Just getting a little down time before heading in for the blood draw.
As for the blood draw, it went ok but JoJo wasn't a huge fan of having his bandages removed and the needle that had been in for the last six days. Although it certainly made things easier when it came to administering meds and taking blood, it had to be done in order to keep everything nice and clean. After all that had been taken care of, Team Taylor met with Joseph's clinic attending, Dr. Blythe Thompson. She was giving the stamp of approval. She took a look at JoJo and his blood and determined all the numbers and everything else are consistent with someone going through this treatment but caution being the better part of valor, Mom and Dad are going to still keep Joseph is full R&R mode. One bit of news from the blood tests was that the Hematocrit was approaching going below 20.0 (it was at 20.3) our hero will be undertaking another blood transfusion. The doctor's say it's not a big deal and a normal part of the process so we've got to trust them (especially since most of us probably didn't know what Hematocrit was until we checked out the link.)
Upon arriving home, Mom received a call from the hospital asking that they come back to the hospital to take a little more blood as they needed it for matching for the blood transfusion. Mom wasn't having that and very politely informed them that Joseph would be relaxing for the remainder of the day and all of Thursday but would be willing to get in earlier on Friday. The nurse agreed, and instead of going in at 2pm on Friday JoJo will be heading in at 9am to get the blood stuff done, the Vinicristine treatment and the bone marrow sedation and test.
As we've mentioned before, the "Day 8" bone marrow is a pretty big deal. It will determine whether our Hero is in rapid remission, average remission or slow moving. (Say your prayers and send your vibes for rapid remission!) Regardless of what the tests show, these are some of the best doctors in the world and know they can deal well with any class of treatment. But we're all pulling for the 'easiest' class. Incidentally, Daddy's a bit irritated and thinks it's a bit unfair that Joseph is getting his treatment done Friday afternoon when technically the treatment didn't start until last Friday evening. Don't worry Dad, it will just make it that much more impressive when it comes back in rapid remission.
But through all of this everyone still sees the glimmers of our Hero, pre-treatment. For example he loved seeing Star Wars explode into his living room as he enjoyed seeing Mommy (Padme,) Daddy (Anakin Skywalker,) Uncle Brian (Boba Fett) and Aunt Kelly (Princess Lea.) Big Brother Paul, the resident skeleton, took to collecting candy (132 pieces!) for both he and JoJo. The Brothers Taylor then engaged in a bit of hijinx by tossing each piece of candy counted at Yiayia - an experience Joe announced he wanted to 're-enact' when Nonnie came in the morning. Have fun Nonnie! Prior to taking his first shower in a week, JoJo also made the statement that he would do the trick or treating next year and Paul could stay home sick.
This morning, he woke with a bit of the leg pain again and the same protocol was put into place - heating, rubbing and a bit of pain medication. Thus far he's only gotten it in the morning so hopefully it's just a morning thing. But the bright side is the doc says that the first month is tough on even our Hero's body, but after that they go back to acting like themselves. Start preparing yourselves for the full return of Mr. Rough-and-Tumble.
A few final reminders, please do keep the thoughts and prayers coming - we want rapid remission!!! Also, JoJo and the family love reading the comments so click on the 'comments' link below and leave a little hello, or a question or anything - a joke, whatever.
Stay tuned...
As for the blood draw, it went ok but JoJo wasn't a huge fan of having his bandages removed and the needle that had been in for the last six days. Although it certainly made things easier when it came to administering meds and taking blood, it had to be done in order to keep everything nice and clean. After all that had been taken care of, Team Taylor met with Joseph's clinic attending, Dr. Blythe Thompson. She was giving the stamp of approval. She took a look at JoJo and his blood and determined all the numbers and everything else are consistent with someone going through this treatment but caution being the better part of valor, Mom and Dad are going to still keep Joseph is full R&R mode. One bit of news from the blood tests was that the Hematocrit was approaching going below 20.0 (it was at 20.3) our hero will be undertaking another blood transfusion. The doctor's say it's not a big deal and a normal part of the process so we've got to trust them (especially since most of us probably didn't know what Hematocrit was until we checked out the link.)
Upon arriving home, Mom received a call from the hospital asking that they come back to the hospital to take a little more blood as they needed it for matching for the blood transfusion. Mom wasn't having that and very politely informed them that Joseph would be relaxing for the remainder of the day and all of Thursday but would be willing to get in earlier on Friday. The nurse agreed, and instead of going in at 2pm on Friday JoJo will be heading in at 9am to get the blood stuff done, the Vinicristine treatment and the bone marrow sedation and test.
As we've mentioned before, the "Day 8" bone marrow is a pretty big deal. It will determine whether our Hero is in rapid remission, average remission or slow moving. (Say your prayers and send your vibes for rapid remission!) Regardless of what the tests show, these are some of the best doctors in the world and know they can deal well with any class of treatment. But we're all pulling for the 'easiest' class. Incidentally, Daddy's a bit irritated and thinks it's a bit unfair that Joseph is getting his treatment done Friday afternoon when technically the treatment didn't start until last Friday evening. Don't worry Dad, it will just make it that much more impressive when it comes back in rapid remission.
But through all of this everyone still sees the glimmers of our Hero, pre-treatment. For example he loved seeing Star Wars explode into his living room as he enjoyed seeing Mommy (Padme,) Daddy (Anakin Skywalker,) Uncle Brian (Boba Fett) and Aunt Kelly (Princess Lea.) Big Brother Paul, the resident skeleton, took to collecting candy (132 pieces!) for both he and JoJo. The Brothers Taylor then engaged in a bit of hijinx by tossing each piece of candy counted at Yiayia - an experience Joe announced he wanted to 're-enact' when Nonnie came in the morning. Have fun Nonnie! Prior to taking his first shower in a week, JoJo also made the statement that he would do the trick or treating next year and Paul could stay home sick.
This morning, he woke with a bit of the leg pain again and the same protocol was put into place - heating, rubbing and a bit of pain medication. Thus far he's only gotten it in the morning so hopefully it's just a morning thing. But the bright side is the doc says that the first month is tough on even our Hero's body, but after that they go back to acting like themselves. Start preparing yourselves for the full return of Mr. Rough-and-Tumble.
A few final reminders, please do keep the thoughts and prayers coming - we want rapid remission!!! Also, JoJo and the family love reading the comments so click on the 'comments' link below and leave a little hello, or a question or anything - a joke, whatever.
Stay tuned...
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