"Patience is bitter, but its fruit is sweet."

As we've all learned through our Hero's march, there have been and will continue to be, the frequent bump in the road or even an occasional detour. Well, this week was no different with JoJo catching a bit of a cold on Thursday. But being the warrior he is, he fought through it and didn't even have to go into the hospital. Unfortunately however, the bug didn't help Joe's numbers - Hematocrit - 35.2, Platlets L162, WBC 3.9 (which is actually up from last week and should help the ANC start to climb again) and ANC remained pretty stagnant at 468. As much as everyone would like to get started on the final treatments, Joseph's body isn't quite ready for the the Cytoxan and Ara-C treatments to start today. We're all hoping a good healthy week will do the trick for ramping the numbers back up.

Although feeling a bit down and out for the last week (as well as finding more and more hair on the pillow - Doxoburicin is not hair friendly,) our Hero has been up and around much more this week. The appetite is still pretty strong but the intake seems to be slowing a bit and the slow belly shrinking process seems to be starting. But JoJo is making good use of his time with a LOT of Lego work being done - not to mention revisiting the Indian Jones Trilogy in preparation for this weekend's viewing of the new Indy movie. (All of which Mom is fully on board for... as long as they can avoid a trip to Red Robin or TGIF for dinner.)

As always, keep the prayers and positivity coming! Stay tuned...

This stuff is a pain in the butt... literally!

Our Hero plods on bravely and in the view of the nurses, they are very happy with how he is doing considering the intense nature of this phase of the treatment. But even with that, JoJo has his challenges and tough stuff. As we mentioned last time, one of the meds causes a breakdown in his soft tissue in areas like the mouth, the nose, the throat and well... his butt. So yes, sometimes this stuff can literally be a pain in the butt. But the pain meds have helped with that and even turn Joe funny and talkative.

But as hero knows, it's not all parades and Yiayia's lasagna. Sometimes it's tough to figure out why need to be, as Joseph puts it, "in his personal business." A man needs his privacy after all! This is a lot to wrap your head around. But he isn't much for complaining, Joe, like his Mom and Grandfather, just prefers to be grumpy instead. I think we all agree, our Hero is entitled to feel anyway he likes.

It appears JoJo also is feeling entitled to eat whatever he likes - he eats roughly twenty meals per day. Below is a list of what he ate between 6:10am and 12:30pm on Tuesday:

Oatmeal w/ raspberries
2 soy sausages
1/2 of a peanut butter bagel
1 piece of bacon
Lays chips
Corn dog
Mini pizza
Cheetos

He truly is a slave to his cravings but with the end of this part of this phase in site, they will subside so it's ok to indulge him. (The funny thing is, if he's not eating food, he's talking about it - if anyone was wondering Blanca's eggs are the best, Dad's are the worst, but his pancakes are the best.)

Yesterday was the trip to the doc for lab tests and it was a mixed bag. His Hematocrit (37.6) and Platlets (262) are great, while his WBC (L1.5) and ANC (413) need improvement. But none of this is a shock although it may delay starting the next step as his body needs to be ready (specifically that ANC needs to get back up over 750.) But even the delay is not a huge thing as only 1/3 of patients going through are ready to go right away, another 1/3 need an additional week and a final 1/3 need two weeks before they are ready to start the Cytoxan and ARA-C for two weeks. Although it's tough on everyone to see him at less than 100%, our Hero continues to inspire and march on so keep the prayers and positive thoughts coming! Stay tuned...

Everyone needs challenges!

Although our Hero has slowed down a bit under the weight of his medication and well... his weight (the steroids have tacked four to five pounds onto his frame), Wednesday was a call for celebration as that was the last day of the Doxburicin. The Doxburicin isn't just tough on the cancer, it can be tough on heroes as well as it creates a breakdown of Joe's soft tissue. With that, it's of the utmost importance to keep the areas of breakdown (mouth, hands, feet, etc.) clean and free from infection. Mom is looking like a gunslinger in the old west but instead of a six shooter she carries Purel and wipes. The germs don't stand a chance!

JoJo's numbers this week were still strong (Hematocrit: 37.9; Platlet Count: 262; ANC: 2032; WBC: L3.2.) Doxburicin takes the numbers down Doxburicin takes the numbers down and Dexamethasone brings the numbers up so it will be interesting to see what happens when a break from both happens and if all goes well the goal is to have a week off from May 14th to the 21st in which his ANC stays above the minimum of 750 so he will be cleared to start the last phase of treatment.

As far as the fun stuff, with the desire to try to satisfy our Hero's appetite while keeping his weight as controlled there are some very specific things on Joseph Taylor's 'Good Eats' - turkey is fantastic, popcorn is amazing, strawberries are delicious and although it's hard to get, JoJo has some connections, Yiayia's lasagna is out of this world. :) With the help of his blanket and plenty of time on Mom's lap, Joe's spirit and determination has been amazing and serves as an inspiration to everyone.

But if the challenge of trouncing this illness wasn't enough, our Hero's reputation (as well as his desire for new challenges) has preceded him. Joe Taylor has been named the "Kirkland Chief of Police for the Day" that will involve a police motorcade and a swearing in ceremony with the Governor. Now not only will JoJo be ridding his body of cancer, he will be ridding the rough streets of Kirkland of crime! So collect all your outstanding parking and speeding tickets and hope for a benevolent Chief when the day comes. Stay tuned for more news on that! Keep the prayers and positive thoughts coming everyone!!!

A Little Numbers Update...

Although they are steroid enhanced numbers, we won't be putting an asterisk next to the most recent great test numbers for our Hero:

Hematocrit - 35.6
Platlets - 276
WBC - 4.5
ANC - 3438

After taking another round of Vincristine and Doxorubicin, Team Taylor was directed to be a bit more liberal with Joe's anti-nausea medications so he will go from receiving one does a day to receiving three doses a day in hopes that that will provide some relief. Seven days of steroids down only 14 to go!

Keep the prayers and positive thoughts coming! Stay tuned...

Delayed Intensification is Delayed No Longer

As noted in the last post, our Hero as been cleared and has begun the last of the intense treatment phases. This, as we all remember, involves a dramatic increase in medicine and treatment visits - not to mention side effects. Joe is doing well so far but is starting to feel the effects of the new and increased meds. His hunger is starting to build but it is being stifled a bit by the nausea that has reared its head. Team Taylor is investigating to see if this is a result of the Doxorubicin or just how the Doxorubicin reacts with the Dexamethasone (Mom, Dad and Nouna will chat with the doc about that when Joe goes in for his spinal methotrexate sedation and PEG.) It seems to be slowing a bit but Mom is getting the anti-nausea medication ready but it's a delicate balance as no one wants to see JoJo uncomfortable but endlessly taking pills isn't fun either.

But even with all that stuff our Hero had a great and very weekend. Although he didn't feel up to play in his baseball game on Saturday, he did have a great time watching his big brother Paul and cousin Daniel tear it up on the baseball diamond. JoJo had fun with cousin William, had a double sleepover Friday through Sunday with cousin Adrienne sleeping over and topped it all off with a fantastic Greek Easter Dinner at YiaYia and Papa's house that stuffed everyone with food in preparation for a week of treatment.

As always, keep the prayers and positivity coming and stay tuned for updates on this week’s treatment...

Quick Update!

Hot off the presses... or more acurately, fresh out of the labs... our Hero's ANC has climbed back up to 1104 so he has been cleared to start his treatments! Stay tuned...

UPDATE TO THE UPDATE:
As stated above Joe's numbers are going back up - along with the ANC improvement came word that his Hematocrit was up to 35.1, platelets to 180 and WBC to 3.1. So as stated above, the green light has been given to start the tough Delayed Intensification phase. But as Mom says, 'we can't finish it unless we start it first.'

During this phase he will be getting Vincristine on Wednesday's for three Weeks and Doxborubicin for three weeks on Wednesday as well. He gets a PEG shot in both legs Monday 4/29 and a IT Methotrexate sedation Monday as well. He gets a week off of meds beginning 5/14 to prepare for 5/21 the Cytoxan (1 day admit) and ARA-C, daily doses in the hospital for 4 days. He will also be taking oral chemo at this time he will start the cousin to Mecaptopurine-Thioguanine for 14 days 5/21. If everything stays on schedule our Hero will be done with Thioguanine 6/3 and 2 weeks off and begin Maintenance (as long as his numbers are 750 or above) for 3 years beginning 6/18/08. This entails quarterly IT Methotrexate sedations, daily mecaptopurine; 2x weekly Bactrim, 1 monthly Vincristine, and 2x-5days a month Dexamethasone.

As you could all guess, with all that nasty stuff going in that means an increase in steroids to keep JoJo's numbers up. That increase (a double dose until the morning of May 14th) is most likely going to pack a hunger and craving inducing wallop for which the medical team advised Team Taylor to brace itself. Efforts are being made to do just that by going low salt as well as working to keep Joe busy and occupied (including continuing to play baseball for as long as he can until it gets too uncomfortable.)

This from the desk of Mom:

"We are so pleased to begin this last phase of intensive treatment. We are so proud of Joe. The Nurses are marveling at how great he is doing and how good he looks. We pray that this next three weeks for him isn't utter torture and discomfort. But WE CAN DO IT!

Rollin' rollin' rollin'. I am very pleased today."

And as all know, when Mom and Joe are pleased - all of Team Taylor is pleased. So keep the prayers and positive thoughts coming! The homestretch begins, stay tuned...

Patience is a virtue and learning from experience is good!

Team Taylor has learned many things on this journey, one of which is that schedules are kind of pointless and the only schedule or calendar that is needed is the lab results. The last week or so has been yet another reminder of that. After a lab that revealed a decreasing ANC of 695, our Hero's oral chemo meds were cut in half with the intention of returning to normal dosages after this week’s labs. Well, this week’s numbers revealed a 34.0 Hematocrit, 198 Platelets and a lower ANC of 289. So instead of pushing it the doctors suggested taking the week off in order to prepare for the start of the Delayed Intensification on April 23rd. Again, keeping in mind that that is dependent upon Joe avoiding illness and his ANC getting back up to 750.

How is all this reshuffling and variation affecting JoJo you ask? Well, simply put, it's not. Mom says that he's been a champ, including strutting into the hospital like he owns the place. We can all agree that if courage and bravery were currency, he'd own the hospital, the block it sits on and the city in which it resides. Our Hero has been the shining example of how to take pills and deal with multiple finger pokes. No complaints, no tears, no fear. He really is starting to take his Hero persona seriously.

But fret not extended Team Taylor members, JoJo's life hasn't been all blood draws and chemo treatments. As they say, you can take Joe out of a 'normal boy's life' but you can't take the 'normal boy's life' out of Joe. He's been playing baseball, running around with his big brother Paul, his cousins and his friends and had a fantastic trip to the awesome Great Wolf Resort water park. Unfortunately for Joseph, his efforts to convince Mom and Dad to allow him to quit school have fallen on deaf ears. That is a monster that even this Hero can't slay.

It has been fantastic to see the return of the kind, affectionate, inquisitive, loving and caring boy that everyone knows Joe to be. But as great as that's been, Team Taylor is lamenting the very real probability that when the aggressive treatments (50 days of high steroid doses, bi-weekly chemo and dealing with discomfort, trouble sleeping, insatiable cravings, etc.) return, the "Real JoJo" will disappear for a while. However, if there is another thing Team Taylor has learned is that the "Real JoJo" is fiercely resilient and will never be far.

So with that, Team Taylor prepares for next week and the start of the last tough phase of the treatment as well as Greek Easter. Now it's also important to realize for everyone else that the break isn't just over for Joe, it's over for all of us too - crank up those prayers and positive thoughts, the finish line of the hard part of the treatment is in site, but it's a steep home stretch. Stay tuned...