Saturday, December 22, 2007
Getting stronger and stronger...
JoJo remains active - playing and running around. His appetite is still a bit small but the doctors say that is very normal for this part of his treatment. For those that know Joe, there is little fear that that appetite of his will return. :) Although his blood work numbers were a bit flat (28.9 Hematocrit and an ANC of 864) the doc reassured Team Taylor that this is good in two ways, the blood work indicates the effect that the treatment is having and it no longer measures how good he's feeling, that can now be indicated by Joseph's behavior, mood, activity level, etc.. All these things indicate the treatment continues to be effective and our Hero is feeling better because the cancer is no longer present, which reduces pain, lets your body work with you as opposed to against you and allows him much more energy. Oh, and getting of 'The Juice' (steroids) helped alleviate many of the symptomatic side effects as well. But even with all that caution remains the better part of valor in order to ensure Joe doesn't catch any bugs or anything.
The plan going forward will kick back off on New Year's Day (rather than the 28th of December due to the hospital being all booked up.) These treatments will make his levels go down, so this time off will be important to allow him to build up his strength for the next battle. It'll be a schedule of January 2nd - January 5th and then three days off and then back on for another four days of treatment January 9th through the 12th. Then JoJo will be all done with Consolidation and it will be on to the Interim Maintenance which should be more manageable with a lessening of medication and a more standard approach in the study. The phase after that is Delayed Intensification (which is much like Consolidation) but Team Taylor is ready!
All are looking forward to Christmas, being around family and being happy - all of which takes on renewed meaning for Team Taylor this year. All the best to all the family and friends and extended team members of Team Taylor, have a very happy holiday and remember Joe in your thoughts and prayers. Stay tuned...
Monday, December 17, 2007
'Tis the Season...
Well Joseph Daniel Taylor went missing sometime in late September and returned this Saturday to his home in Kirkland.
Complete 360 Steroids wore off? Cancer is not present in the body? Body is on the up and up from the transfusion?
He has been running, playing with his toys, getting in sword fights, starting army guy wars, playing with his guys, chasing his cousins the whole nine yards. He has been told to “settle down”, and “quiet down” on several occasions both Saturday and Sunday. He wanted to join us for church, was the first to take communion and then wanted to join his class on the stage for the Christmas play at church. Good happy times over here with a weekend like that.
There is no gift that could be put under the tree that could rival that bit of information for sure! All of this is even more impressive after a big but successful day on Friday when everything went great, although it did seem to take forever. But our Hero celebrated the best way he knew how by preparing putting on a video game exhibition for Jen and Ericka on Friday... all the while preparing himself for Christmas at Nonnie and P.T.'s that will be taking place today.
As far as next steps in the treatment, Joe has an anti-pneumonia pill on Monday and Tuesday and then a spinal Methotrexate and IV Vincristine push on the 20th and then it's a full break until December 28th when the stronger treatments kick in again with two rounds of 1x Cycolphosphamide and the two weeks of F-M Cytarabine. For those keeping score at home, this was a tough one last time, but Team Taylor has not been sitting idly by and have learned the lessons - this time more IV hydration and nausea meds will be utilized to help ease things again.
Everyone is looking forward to Christmas, Mom had a great birthday (she says the world is always a better place after some time with Dad/some shopping and a trip to the spa with her nearest and dearest friends.) Keep the prayers and thoughts coming for more good momentum and positive response to the treatment!
Wednesday, December 12, 2007
Keeping the momentum rolling...
The blood work this week came back a little low (hence the transfusion) but all of that is completely to be expected given all the chemo. But even with all the treatment, Joe's ANC remained above 1000 which helps fight off the germs. So everyone keep the prayers coming that the treatments go well this week (Friday is a big one - Spinal Methotrexate - sedation, Vincristine - IV push and PEG muscular leg shots - while sedated) and that the next set of blood work shows a bit of a bounce back. Let's keep it going! Stay tuned...
Monday, December 10, 2007
You can't keep a good Hero down...
The high point of the week was a trip to Lynnwood to Wights, where Joe, chief ornament and nutcracker analyst, loved looking around the store (hands stuffed in pockets per Dr. Mom's orders) telling everyone what one's he liked. It was great to get out on a day trip like that - it's been a while and hopefully will be something that will be happening more and more as Joseph gets stronger and stronger and STRONGER. In the meantime, JoJo will keep focusing his attention and strength on healing (and a little bit on the Xbox and the Nintendo DS video games.)
As far as meds and treatment goes, Joe continues to take his Mecapurine (anti-nausea medication,) Bactrim (anti-pneumonia medication) but no steriods! Joe didn't want any asterisks next to the records he plans on setting so opted for getting off 'the juice.' :) Seriously, they think Joseph's 'moon face' will disappear after about two weeks and his stomach has already gone down a lot and he's lost four pounds. The docs would prefer he not lose so much just yet. Sheesh! Make up your mind medical staff!!! The Italians say it best - Madone!
Friday was the treatment day as usual and started calmly and quietly until the numbing cream was applied and our Hero is no dummy, he knows that means a poke is imminent. Yiayia and big brother Paul both knew it was going to be a 'loud ride' to the hospital. A little "Mission Impossible" movie action in the car helped calm things until he saw sign of the cart and the JoJo siren was turned on for the two 'child life specialists' and a 'poker' (who Mom is convinced will be asking to be moved to another case next time.) But then calm set in and Nonie arrived after the poke and didn't understand the stories because she was witnessing a very calm and collected little man. After the back poke, flu shot, hydration (for the Cytrabine) he had to stay a bit longer than normal but didn't mind at all as his grandmothers were providing a good audience for his Nintendo DS mastery. Finally, it was off to "Johnny Rockets" for some lunch and although Joe didn't eat much he did enjoy the new scenery.
Fingers are crossed for the weekend and today's therapy and the chemo that accompanies it. It's the hope of everyone that the hydration done on Friday will really help the nausea. The count is on for January 18th when Joe and Team Taylor can move past this phase of the treatment.
Joe's blood work indicated his blood was tolerating the increased 'chemo blasting' from last week and his Hematocrit is at 24.4 (any closer to 20.0 and he'll go in for a bit of an 'oil change' next week - aka a blood transfusion.) His ANC was 1545 which is still great to fight off any germs with which he may come into contact.
As a final note, Team Taylor wanted to spend out some special props to an object that has come to be known by all as "Creamy." "Creamy" is JoJo's blanket and he and "Creamy" are inseparable - and "Creamy's" reputation proceeds him as even the nurses say hello to him when he comes in with Joe. All hail Joe the Hero and his faithful "Creamy."
Keep the prayers and positivity coming for a good week of treatment. Each day brings another 'x' on the treatment calendar! Stay tuned...
Tuesday, December 4, 2007
Even Heroes have tough days...
The remainder of the weekend was spent in the friendly confines of Taylor manor, relaxing on the couch, snoozing and watching movies. Sunday and Monday also involved a couple of more trips to the hospital for Cytarabine treatments but now there is a break before it's back for a spinal and more Cytarabine on Friday - and Cytarabine daily for the 3 days after that as well. A Hero's work is never done.
Speaking of responding, Joseph had his first case of vomiting after his treatment of both IV Cytarabine and Cyclophosomide. After which he very quickly notified Mom that Dad will need to be getting him a new Xbox game for his efforts. Can't argue that logic.
Joe's fever continues to come and go but the doctors aren't too terribly concerned because his daily tests have shown that the fever is not bacterial and it appears that the fever may be just a bit of a reaction to the Cytarabine which does have a history of having some "flu-like symptoms" that serve as side-effects. Team Taylor is treating our Hero with Tylenol every 4-6 hours, alternating it with the nausea medication.
There is a break on the horizon though, as Joe will get to be free of the treatment (minus the Friday spinal sedation Mothotrexate treatment) from 12/11 to 12/28. Happy Holidays indeed! An additional piece of good news, as of Sunday JoJo is off the steriods and it has resulted in a 75% reduction to his stomach and he's lost 1.5lbs.
While Mom crosses the dayst of treatment off the calendar, keep the prayers coming that Joe doesn't suffer much with the nausea, fever, etc.. Although he still isn't much for complaining or whining, sometimes Joe's placid silence can be just as deafening. All are used to seeing our Hero flying around with his cape flapping behind him, it's not a fun or easy thing to see him dragging a bit so say an extra prayer and send extra positive vibes to Team Taylor.
Stay tuned...
Friday, November 30, 2007
Right on Track
- Bone marrow tests indicated less than 1% or no remaining leukemia cells. A result that has been echoed by his spinals. NICE!
- The MRD (centrifuge like machine that spins the cells) came back negative when tested for the illness. YES!
- Blood work all looks good Hematocrit remains solid at 30.9, platelet count at 149, WBC at 5.5 and his ANC remains good at 2585 (well above the 500 that is the risk area.) HOORAY!
Bottom line - our Hero is right where they want him to be at this point in his treatment. He continues to attack his treatment with courage and determination and his hard work along with all the prayers have been getting rewarded with his rapid response, limited side effects and the means by which to handle the side effects and and/or when they do arise. Still a lot of work to be done but Team Taylor is very thankful and wants to keep it rolling!
This week marked the start of the "Consolidation" phase of Joe's treatment and it kicked off with a Spinal Methotrexate sedation that was done yesterday. As we've all come to learn, sedation treatments = fasting which usually = an angry, hungry JoJo. But luckily Team Taylor is starting to see some of the benefits of the decrease in steroids and the hunger wasn't quite as bad as it has been in the past. Mainly what was seen was Joseph was a bit sad he had to go back again - because "he feels better." Although a little tough to understand, it's an explanation and "side effect" that is gladly explained. But Joe is getting used to it too and although still not a big fan of it and let's people know he'd really rather be home giggling, playing Xbox on his beanbag, he does understand he needs to let people do their job. What a guy!
After a few weeks of intensive research, lots of guidance (thanks to all who helped with this,) emotional charged discussions and tons of prayer - Team Taylor has reached consensus on the roughest decision they've ever had to reach - Joe will be entering the study. All have been assured that at no point will Joe ever receive less than the current standard treatment plan but he may at times be receiving more as the goal of the study is to explore\prove the the increasing of the treatment can more quickly narrow the gap of recovery and increase the cure rate while reducing the recurrence rate. (Which currently sits at 85% cure and 15% recurrence.) So in many ways, JoJo will not only be beating the illness for us, he'll be beating it for everyone's children and their children's children. Wow, ummm, what did YOU do today? Hero may be getting to be too small a word here.
As far as the study goes, Joe will be in "Intensified Consolidation" which begins today and then for the "Interim Maintenance" and "Delayed Intensification" he will return to the standard protocol. Team Taylor thinks this was a great draw for Joe. He will be admitted today for a treatment while being hydrated, then flushed and released early tonight. He will return another four times for daily "IV pushes." This goes on and on for a 57 day span.
Team Taylor wants to take a breath and just wanted to thank everyone... for everything...
Now, on to phase two so keep the prayers and good thoughts for a healthy Joe and no side effects. Stay Tuned!
Monday, November 26, 2007
Our Hero Gives Thanks
With Thanksgiving now in the rear view mirror, Joe and the rest of Team Taylor's focus turns to Christmas and all the things that come with it - which includes Dad turning Casa de Taylor into the Kirkland Branch of the North Pole. (Special thanks to Travis for helping Dad get some of the stuff set up and for playing Xbox with Joe while the job was finished) Santa will fill right at home when his visit comes on the 25th of December.
Friday's treatment set went well. The labs continued to be good as his blood counts were improved due to getting a little rest and having only one chemo treatment last week. A highlight of which was Joe's ANC which shot from 400 (which results in a no visitor lock down) to a robust 4400! If nothing else, it gives Mom good peace of mind and also allows the folks at Purel to restock. Team Taylor tried a new tactic (per the advice of Rod and Carin Moore) and tried feeding Joe at 4am to ease the hunger that comes with the fasting that comes with the sedation day of treatment. The jury is still out on it's effectiveness because "the alarm" as Mom has come to call Joe's protests, were ever present. So that being said, as soon as JoJo came to, it was another sedative clouded stumble down the hall, out the door and to Burgermaster.
Joe continues to be blessed by having great doctors, a new one of which met with the family this week. Dr. Gyer is the head of Hematology and Oncology and everyone found him easy to talk to and very helpful and patient while getting peppered with questions. (We'll see whether the doctors feel as lucky when Mom, fully armed with information, turns up the interrogation spotlight on Dr. Thompson as it pertains to the study and standard treatment on Wednesday.)
Although, JoJo's treatment on Friday left him a bit nauseous and tired he didn't utter a whimper and only let Mom and Yiayia know his stomach was hurting. A bit of Zofran medication and things got a bit better and things got a lot better when big cousin Daniel had our Hero giggling and smiling with his dancing and video game expertise. (Daniel also shared some more expertise on the basketball hoop, helping tutor Holy Family Boys and Girls Club basketball player, Paul Tor Taylor.)
Finally, showing that his power knows know bounds - Joe willed the Cougars to an Apple Cup victory. (ed. note - Joe - please use your power only for good from now on.) The Taylor family was well represented at the game - enjoying it with friends and family.
A few final notes - Joseph has officially begun to taper off the Steroids on Friday. It's all of Team Taylor's desire that this will help to 'deflate' Joe a bit and provide some relief. Joe would like that on multiple levels - both comfort and aesthetics. Upon seeing himself in the mirror today he asked "why are my cheeks so chubby?"
Stay tuned for some more bone marrow and remission rate info mid-week. Keep those prayers and vibes coming!!!
Wednesday, November 21, 2007
And One Hero United the World...
On the home front, Team Taylor is finding it's rhythm with a life that is focused on banishing this illness and with that rhythm everyone is starting to see the fog lift a bit, and getting more and more glimpses of classic JoJo and it his been a big relief to all. Although his appearance has undergone a fair amount of change due to the medication, he is still the adorable little man we all know and love - everyone just wishes he didn't have to be uncomfortable with the swollen belly, etc.
Team Taylor had an opportunity to speak to some families that are going through or have gone through the treatment for ALL. It was offered the family great insight and even greater relief to talk to people that have weathered the tough first 6 months. Both families agreed that the toughest drug to take was the steroid Dexamethasone. The good news there being that in another 3 days Joseph will get to start to taper down the dosage (it couldn't come any sooner either because Mom is worried his tummy is going to pop.) But outside of the drug that makes him a bit moody and a little more prone to share his frustration, our Hero courageously marches on in calm, quiet determination (this includes taking his medicine twice a day without a peep.) It amazes everyone.
From the boys will be boys category, Joe spent some time getting some exercise (i.e. working to shed some of that extra cheese and BBQ chips weight) by going on some long walks with Mom, collecting pine cones for Yiayia's center piece. This was a job he took very seriously and worked very hard - so hard in fact, that much to Mom's chagrin, Joe wanted to try digging up some really good pine cones. That was quickly put to rest - maybe in a few months or so Joe, we'll all be glad to go out and dig for pine cones with you - but for now, Mom's got to keep him clean. Although, this illness has robbed Joe of doing some quality pine cone mining, it did give him something pretty cool, that any male in our reading audience can appreciate. Yep, you guessed it, he has a scar - just in case anyone doubted our Hero's toughness he has proof!
For now Team Taylor is savoring the weeks with the reduced hospital trips, although it most likely change when the treatment ratchets up, everyone is really enjoying it and charging up for when the treatment kicks it up a notch. As Mom says, onward and upward, bring on Consolidation!
Happy Thanksgiving to all - we have plenty for which to be thankful! As always, keep the prayers and vibes coming!!!
Monday, November 19, 2007
Six Degrees of Healing
We have to make a major decision regarding the possibility of Joe participating in the Clinical Study of Standard Risk B-precursor Acute Lymphoblastic Leukemia by Friday this week 11/23.
We are reaching out to you because we know you’ll either:
- Read the enclosure because you just want to know what’s going as a friend or family member.
- Perhaps you’re in a situation that you can pass it on to someone in the medical field you are related to or are friends with to see what they think of it.
- Or you plan to study it (specifically the drug types) on the internet to see what you find out about it. (We find it very hard to surf on the internet for this type of stuff because you run in to so many horror stories; We're not really up to reading those right now.)
Standard Risk ALL is treated as follows:
Induction (28 days) – purpose of induction is to achieve remission; meaning leukemia is no longer detected in blood or marrow
Consolidation “C” (28 days) – designed to prevent the appearance of leukemia in the central nervous system and further decrease appearance of leukemia cells.
Intensified Maintenance “IM” (56 days) – allows the child to recover from prior treatment phases and administer less intense chemotherapy
Delayed Intensification “DI” (56 days approx.) – more intensive chemotherapy is given. First part of treatment is similar to induction, but includes new drugs.
Maintenance – lasts about 3 years for boys. Long term treatment that is necessary to achieve a permanent cure. Boys have shown needing longer treatment than girls (a year more).
If you are interested in reading the enclosures mentioned above, just leave a comment stating so and we'll be sure to get you the docs to read.
Thanks All!
Sunday, November 18, 2007
There really can be too much of a good thing
Joe had a good week hanging with Mom and Yiayia - creating art, doing puzzles, reading books and honing his negotiating skills when it came to discussions of food. He is a real renaissance man this Joseph. The good week was punctuated by a good, fairly easy and quick (albeit not quick enough for Joe) trip to the doctor.
Friday night Aunt Kristi and cousin Nick came by for some entertainment and babysitting - definitely the highlight of the week for our Hero. Ever the understanding one, JoJo was ok with not being able to attend big brother Paul's 7th birthday party. But Paulie, ever the magnanimous big brother, decided to open his gifts at home so JoJo could watch. Team Taylor was also excited to have Paul's Godfather, cousin "Paul" up from Petaluma for Paul's birthday.
Now that we have learned that Joseph is a rapid responder and that there are no bad chromosomes (very good news,) Team Taylor will be really hitting the books so to speak by digging into the Clinical trial papers to understand and best educate themselves in order to make the best decisions for which course of treatment will be the best for our Hero.
There are four arms to the "Standard Risk B-precursor Acute Lymphoblastic Leukemia" and each arm is a random allocaton for each patient participating in the Clinical trial. The standard form of treatment has a 85% cure rate with no recurrance is one of the arms but what the Clinical trial is trying to accomplish is increasing that to a 98% cure rate by using more of the smae medications used to treat the Standard Acute Lymphoblastic Leukemia (ALL). Understanding all of this is important in order to make the big decision of whether to participate after Joe is put into an arm as there is a bit of risk in more medicines and more treatments as it could put him at risk for more infections, side effects and hospital stays.
So here is where all of us Team Taylor members come in, if anyone has direct knowledge or know of people that do have knowledge or experience with this disease and these types of treatments - please let Angie and/or Kevin know. Time to help arm Team Taylor with some knowledge!
As always, keep the prayers and positive thoughts and vibes coming!
Stay tuned...
Wednesday, November 14, 2007
Remaining focused...
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!
Saturday, November 10, 2007
Test Day
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...
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...
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...
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...
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...
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...
Tuesday, October 30, 2007
Some call it Casa de Taylor, he just calls it home...
(On more personal news, and news that any one can truly understand, Joe was especially pleased to return to the comfort of his own bathroom where he was...uh... well... let's just call it a success. :) )
Joseph will have to head back for a simple blood draw tomorrow. (Which is easy for us to say, it's not us they are pricking with a needle so it may be an interesting ride.)
Thursday - a little heaven on Earth, home all day w/o out any of the hospital stuff. A respite well earned JoJo!
Friday is IV Vincristine and a Day 8 bone marrow test from the hip (while sedated) to see what those cells are up to and if they are doing as we all hope and pray they are. This will be a great milestone, especially if we find they are recessing which would mean not another bone marrow test until Day 28, if not, it will be back again on Day 14 for another test.
The Family is adjusting to life back at home - but happy to be doing so. (Especially Paul.) Big thanks to Papa for letting Yiayia stay for a little while - a mother's work is never done and that goes for Mom and Yiayia! Thanks Papa!
Keep the comments coming everyone - the family loves reading them, and as always keep the prayers and good vibes coming.
Stay tuned...
Monday, October 29, 2007
Joseph the Brave Marches On...
Joseph came out a little drowsy but doing well, outside of the grumbling in his stomach that we all know is ever present with JoJo. Unfortunately the hospital couldn't grant his wish for breakfast so a faithful Team Taylor member, already on her way to the hospital the medicine chart, made a quick pit stop at Denny's for hashbrowns, bacon and pancakes. Refueled and re-energized JoJo was ready... for some lunch. Then it was off for his echo. After it was nap time, and then fully energized and excited - he dove into the box of fun that was provided by his friends. Then... dinner of course, a little "Dumb and Dumber," taking his oral meds and then off to the land of nod for our hero.
Oh, and lest we not forget, while Joseph was off with Aunt Tina getting his echo, Mom and Dad had a long, un-interupted talk with the doctors and if all the tests go well and the reports stay positive - JoJo will be returning to Casa de Taylor tomorrow! This of course shifts Team Taylor into overdrives and training and dry runs are in full effect as we speak, preparing for a hero's homecoming.
Now we come to the requests we have for the rest of us Team Taylor members:
1. More prayers and positive thoughts. Keep it up!
2. Given Joseph's limited availability to visitors, a project is being undertaken to build a bit of a photo collage of JoJo's biggest fans... all of us. So if you would, please take a moment and find some pictures of Joe's friends, family, favorite times, etc. Please send them to Stefani Johnson at aquinoaopi@comcast.net.
For those that would prefer to send the old fashioned way...
Stefani Johnson
13215 NE 202nd CT.
Woodinville, WA 98072
As always, stay tuned and stay focused people! :)
Treatment rolls on...
Joseph's legend continues to grow and people from all over are flocking to see the hero in purpose his Uncle Father Gus and Aunt Kay flew in from San Francisco to bring their prayers to him in person. The only thing that out numbers the toys in Joseph's room are the blessings that are residing there - Team Taylor feels every bit of that so keep it all coming!
Speaking of Team Taylor it's important to point out that this is a team that is deep and strong. Whether it's Michelle Dahl bringing Halloween cheer, Kelli's cookies that must have some sort of cocaine based secret ingredient to explain their addictive nature, Aunt Tina spending the night to give Mom some well needed recharging rest, Papa personal catering work that has started to feed other families on the floor, coordination of a meds list for the maintenance months ahead, Mom's girlfriends for making her laugh when it seems impossible to do so, Big Brother Paul's inspiration by going out and hammering in 4 goals and one assist in his soccer game on Saturday, Dad's unshakable patience, Yiayia's stepping into make lunches, help with homework, breakfasts and dinners at casa de Taylor and of course Mom whose engine just refuses to slow down - we've said it before - this illness picked the wrong kid to mess with - not only because of him but the team he has.
Sunday, October 28, 2007
Now on JoJo's hit list: Chemo
JoJo continues to be very perplexed by the less than stellar food the hospital chooses and serves him. So the diet has been generously altered with the help of Paps "pasta hats," Nonnie's banana bread and a steady flow of popcorn. Also supplementing Joe's food is a set of medications - Dexamethasone, Vincristine, Allopurinol and Ceftazidime which will all help JoJo beat Leukemia.
Thank you all for the positive thoughts, prayers and the comments on the blog - please keep them all coming - it all helps fuel Joe (not as much as the pasta hats, banana bread and the popcorn but it definitely is a huge blessing. :))
Friday, October 26, 2007
Leukemia just made a big mistake.
As Angie detailed in the email that explained how things had unfolded, Joe was diagnosed with Leukemia early last week and currently is taking up residence at Children’s Hospital where he immediately began a steady ‘diet’ of intravenous fluids to best prepare him for the first major set of treatment that is due to start very soon. But for all of those of us that know Joe, our hero is a fan of food and when you have a group of well-meaning and caring (but controlling) nurses and doctors not allowing you to eat what you want, when you want – this is a recipe for an unhappy and frustrated Joe. But with that ‘unpleasantness’ came some positive news when the tests confirmed that there were no current infections and no cancer present in his spine. A great piece of news to go along with the fact that the ALL Leukemia is the more treatable of the two types of Leukemia that Joe may have had.
But as we’ll see, this is as much a rollercoaster ride as anything and if food cops weren’t enough, these same doctors and nurses that are going to help him beat this disease, are also constantly poking and prodding him challenging his patience and normally jovial demeanor. But who can blame Joe, to the most of us reading this are adults (at least in age if not in maturity or intelligence,) the idea of comprehending a confusing disease and an equally confusing treatment plan would be (and is) a very tough and daunting thing to grasp. Now put yourself in the shoes of JoJo, just a few days ago he was playing LEGOS and Army Men and now he finds himself in a hospital room they won’t let him leave yet – his world has been turned on its ear and that’s been a tough thing for Joe to come to terms with yet. It’s a lot to wrap is arms around so with the help of his parents and the staff at Children’s they are working to find the right combination of medications and such to help Joe stay relaxed as well as pain free as possible. No man is an island people – not even our hero.
Another step in Joe’s preparation was a surgery that took place today that implanted a shunt will allow for easier and cleaner and more direct access for administering of treatment, fluids, etc.. Although Joe’s heart is big and strong, he’s still a growing boy and those veins are small and it’s not fun continually so this implant will be a good thing – plus it allows for easier playing of Xbox and army men without having a tube connecting tying down a little guy that does not enjoy being tied down.
So this brings us to the next steps, treatment will be beginning very soon (if it hasn’t already.) It is a fairly intensive set of first treatment that comes with a list of some potential side-effects that could be tough on JoJo – and of course therefore tough on all his family and friends. During this time, much to the sadness and frustration of big brother Paul, Joe will remain in the hospital. (On a side note, JoJo’s lucky to have such a great big brother – mine used to beat me up all the time.) Paulie, like the rest of us, wants Joe to come home very soon and that’s where we all can help a bit. As we all know, during the time of treatment Joe’s immune system is taking a bit of a pounding so he’s much more susceptible to virus, infection and etc. so for now keep the steady flow of prayers and positive thoughts coming! (Oh and if anyone can find a Vera Wang or Dolce-Gabbana sterile suit for Ang that would be great.)
Check back here regularly for updates on our JoJo’s battle and keep the thoughts and prayers coming!!!
P.S. Thanks to Jose Ocasio, the 82nd Airborne is currently discussing taking Joe on as an Honorary Member. We’re telling you Leukemia, you picked the wrong kid to mess with…