The JoJo Update

1st Grade!

2009-09-08T13:20:00.001-07:00

We are so happy to report that we had a wonderful, active and healthy summer. Joe is set to begin 1st grade. Soccer starts today and he has insisted he does Flag Football too like his brother. So two boys two fall sports here we go!

We started our summer off in Alaska on a charter cruise with the Oberto family; a cruise we bought at the LLS Auction. We had an amazing time and can't wait to someday return! We had a busy summer with swim team, but really enjoyed all the action at the pool. We spent several weekends at our cabin in Cle Elum and loved every minute of family time and "sleepovers" with friends and extended family. We finished the summer in Priest Lake Idaho and it is what Joe dubbed the "best part of his summer", freedom, independence and the outdoors! He even learned to ride a real four wheeler, quite well I might add, seriously scary to watch, but who could of stopped him?

We continue to receive treatment once monthly at Children's, and keep up with our daily chemotherapy pills throughout the month. Joe's blood work has been "perfect" as our nurse has said time and time again throughout treatment this year. We have been very fortunate to keep the major coughs, colds and flu's away this summer, and are up to the challenge of doing the same throughout this school year. Joe's new teacher Ms. Maloney is ready and willing to help keep our classroom as germ free as possible.

We look forward to reporting in on Joe more frequently as we continue towards our path of healing. We feel so fortunate that we are doing well and on the other side of intense treatments.

Much Love,

They Taylor's

2009-01-17T22:59:00.000-08:00

We hope this entry finds everyone happy and healthy fresh into this New Year! We've gotten started back to school, fresh from Maui! Re-entry back into school wasn't the easiest this year. With the time change, snow days, extra time off, school was a real shocker, we did much better this week however!

The break started with everyone getting a cough. We actually really avoided major colds & coughs until mid-December! (This is definitely attributed to Joe's teacher!) Joe had us worried a bit, with not only the cough but a low grade fever for several days and bloody noses. We took him in during one of the blizzards and they tested him all up and said he was fit to travel to Maui with no signs of trouble. Unfortunately the cold/cough brought on a rapid ear infection that perforated his eardrum. Initially they didn't think he was going to be able to swim in Hawaii, but then they came up with a plan a swim cap and plugs (no ocean swimming) and he was good to go. He didn't miss a beat!

Our family very much enjoyed returning to the Taylor Family tradition this year of going to Maui for Christmas Break! The boys did it all, they could of easily stayed a month! Joe did all the water slides without fear, and even had a water taxi at his leisure, his 15 year old 6'3 cousin Jake! Paul was a master body surfer by trips end! Relaxing and enjoyable all the way around.

Of course there has to be some type of health drama, it appears sensitive gums and teeth during intensive chemo broke down some of Joe's dental health, so while we were away he suffered from a tooth ache. Come to find out, he's going to need a lot of work, probably on 4 teeth, poor guy. But again, if this is a side effect from treatment we will gladly get past it and be thankful for the effects that didn't come!

We are all enjoying watching Paul play basketball. Defender extraordinaire! Baseball is just around the corner. Joe is going to be joining his Sacred Heart pals on a Kindergarten machine pitch team, and Paul will be playing his second year of machine pitch with Coaches Dad and PT!

We are hoping to finally complete our cabin next month so we might enjoy it late this Winter and Spring. It's been a long time in the coming, and we look forward to lots of great family and friends weekends in Roslyn.

Much love to all -

Kev, Ang, Paul and Joe

2008-12-07T20:55:00.001-08:00

I can't believe I haven't found time to update the blog for Joe until now! We wrapped up the soccer season and fled right into November busy with homework, friends and family. Joe is doing great at school. He really loves his classmates and truly feels like a Sacred Heart Spartan!

He, his class and the school has worked hard on keeping the boys healthy. Each time I go to Sacred Heart it seems "KA" is in the hallway washing their hands! It's gone a long way to keeping Joe healthy. This weekend however, he made it safely through a low grade fever, it seemed he had a minor cold, but symptoms and fever subsided by Saturday evening, never reaching the 101.0 degree level, which requires us to check into Children's.

We were sorely reminded that steroids are a rough one in November. We had to skip a treatment to avoid steroid dosages and it's proximity to the flu shot. This amounted to Joe taking his 5-day steroid dosages twice during the month of November. It was rough getting it out of his system this time the body remembered the last dose so quickly, and ramped him up on the second dose right away. We hate seeing Joe unhappy, sad, crying, overly hungry, uncomfortable and irritable all because of a pill! Poor guy, it's just not him. We'll need prayers that this next dosage beginning 12/10 is easier than the last.

It's been great only going to the hospital once a month for treatment and blood work. We return on 12/10 for treatment and blood work. We are working towards a clean bill of health and big numbers so we might travel to Maui for Christmas with the whole Taylor clan.

Being in the holiday season reminds us of how far we've come since last year and how wonderful it is to be past the intense, cruddy treatment we endured this time just a year ago.

Joe still of course has a lot of pills to take every week. 11 pills a week, (but when cut up like 19), and the weeks he's on steroids that amount goes up to 44, that's a lot of drugs for a 6 year old. Plus the monthly port infusion of Vincristine and quarterly spinal of Methotrexate. This may increase (as it is protocol if their numbers are "too high", the need to make sure the chemo is doing it's job and keep the numbers at a slightly lower than normal level to indicate it's working on the bodies cells involving the healing process.

Geez, it's no cake walk, but we will of course gladly (take our medicine) to keep Joe on the path of healing. It's just hard to ascertain how he's feeling, if he's "himself", if his energy is where it should be, if we should "push him a bit" with cleaning up, studies, attitude, etc. It's a fine line, but we are learning.

Much love to all during this wonderful Christmas Season!

Love

Angie, Kevin, Paul and Joe

2008-10-19T22:23:00.000-07:00

Joe is doing great, and we couldn't be happier for him. School has been going really well. He really enjoys being with his brother on the way to school, at recesses and seeing him in the hallways and at lunch. Of course brother Paul includes him whenever he can. Each time I happen to drive up at recess Joe is playing kick ball with the big boys and learning the "rules of the yard". Very cute.

Soccer went really well. He was very competitive, excited for his team, loved to score (and did so a lot!). The season is over but with lots of wonderful memories and the realization of how far we've come since last October. I can't express enough how fun it is to see Joe running around and enjoying being a boy!

We've started in with homework, not so easy, but again he's willing because brother Paul has to do it too. The have such wonderful ways of getting through to them about reading, writing and everything else that comes along with it. He's really enjoying meeting new friends and most importantly loves his teacher Mrs. Geary.

His 10/1 appointment went really well. It had been a month since we walked through the doors of Children's. We were able to get our blood test in between at Overlake 9/17 (finger poke). Joe had Blood tests that came out great, ANC 1500 and Platlets, Hematocrit, WBC all also in a very good place.

We were given the green light for Vincristine and the Methotrexate spinal sedation. They also wanted to give him the flu shot in that procedure, so steroids would have to wait two weeks (makes the flu shot in-effective). Eeek two five day courses of steroids in 30 days beginning 10/22, should be a bit of a hungry ride for the month of November! The benefits of the flu shot and school was too beneficial to pass up.

We continue to pray he stays healthy. Joe's had a couple of colds-but mild sniffles, nothing chesty. We are trying to keep his energy up, making good food choices and getting to bed at a good hour. The treatment 10/1 left him a bit nauseous, reminding us that these medicines are no walk in the park, he's just really tough and willing to power through it. I'm always pleased when he allows me to give him nausea medication to help him through it. It usually doesn't last any longer than 3-5 days after the treatment.

His daily meds are getting really routine and a pleasure knowing we are fighting to stay far away from where we were just one year ago this week. Much love to everyone! Thank you for your prayers!

Angie, Kevin, Paul and Joe!

2008-09-16T22:06:00.000-07:00

Joe had another great week at school. He's really getting into the rhythm with minimal complaints. (OK maybe the sack lunches aren't exactly what he planned for himself, he loves warm food, and of course he misses his "guys" at home.) He is learning a ton, and has made a best buddy already "Brandon". We are so happy he is comfortable and happy. Although full day started this week, with him falling asleep for :45 minutes are rest time! I did notice upon arrival he wasn't the only one tired! They do a great job of not overworking them but getting them into a routine. Three recesses, lunchtime, story time, gym, music, art, rest, it's all good. They literally fool them into learning! Of course the "free choice" opportunity is Joe's favorite, it just so happens his teacher has a large collection of Lego's! They've also agreed he can come home at anytime during the day, so if he is having a tough week we plan to go get him.

Wednesday 9/10 marked the start of Dexamethasone again. I can't believe we have to face that every month, our sweet agreeable little guy disappears for moments for about 8-10 days. He is mostly starving though, sweet talking me into making him mini meals he is starting to "get it" more, we have a good chuckle once in awhile about the sheer volume. He runs a little tired during this course too, but we'll take it all to continue on this wonderful path of healing.

We need to say a prayer for Joe's teacher Mrs. Geary as these weeks will be harder on the classroom as well! He will likely show signs of hunger, anger, but mostly lots of "no fair". She claimed he did great Friday, but she is already developing a sweet spot for him. He has a knack, it must be those big brown eyes. She should of heard him in the car after school, boy did I get a talking too! It's not his birthday yet, his X-Box is broken again, his lunch was cold, he really got it all out. I guess it's good - lay it on me instead of publicly. Poor guy, having a blow off session really seems to help.

He was also able to get both his monthly port dose of Vincristine and continue on Mecaptopurine M-F, and Wed. Methotrexate. His numbers were exactly in the range of where the doctors wanted him to be 1300 ANC, 3.3 WBC, 36.1 Hematocrit, and 218 Platelets. They were very pleased with how he looked and acted! Great News! He also got over his cold on his own too. I'm sure the twice weekly (M-Tu) Antibiotic helped some, hey we'll take it.

Sat. 9/13 was Paul's first soccer game. He was all over the place and scored a goal too! He is so fun to watch. Joe's up next Friday 9/19. Surely the "SHS Orange Kindergarten Team" will be a hoot.

We are looking forward to another wonderful September week!

Much Love,

Kevin, Angie, Paul and Joe

2008-09-04T08:24:00.000-07:00

"Chief For a Day" worked out to be a great day for our family Thursday 8/28. It started with a police escort from our front door by the Kirkland Police. Two SUV vehicles and 2 motorcycle cops! We caravanned to the motorcade meeting place in Kent, WA. We then made our way from Kent to Burien to the actual location of the event, NW Police Academy. The motorcade was a site to see with motorcycle cops from all over the city paving the way for the 14 "Chief's" being transported by limousine! Rock star status! Paul was able to ride with Joe in the limo along with some other siblings, because after all, he deserves the royal treatment too!!

Once at the event the "Chief's" were sworn in at a ceremony and escorted by two Academy trainee's for the entire day shadowing them through the chaos and excitement. Joe had quite the audience watching him be sworn in; Mom & Dad, Kristi & Julia, Erika, Kai & Makana, Amanda, Luke & Lola! There was a great lunch and a presentation of the "present" table. It was literally like Christmas. (I have to mention again - what to do with this child when reality sets in - like real soon here. I'm not saying he doesn't deserve it all, but it's a real head game to be getting gifts year round for a 5 year old! ) Outside activities included a bounce house, helicopter demonstration, pony rides, free reign to explore the assault vehicles and the SWAT cars, a rifle demonstration, ability to operate bomb robots (the officers were quite amazed with Paul & Joe's ability to operate the controller - go X-BOX!), an attack police dog that bit and jumped on a "bad guy" in a stunt suit but only by the command of the "Chief's" as ordered by the police dog's commanders (got that on video). It was a crazy "all about the kids day". How special that we were nominated by friends and neighbors in the community. He was honored in the local Kirkland Courier Newspaper for his role the event and even had his face shown on Channel 4! What a day to be Joe!

The weekend was followed up by a stay at Yiayia and Papa's with a trip to the dollar store and of course as usual lots of special requests to their "short order cook" Papa, along with the day with Non and PT exploring all around the yard.

The boys started school at Sacred Heart School on Tuesday. So adorable in their uniforms! Both of their teachers are a fabulous fit for them. Joe's teacher is committed to keeping Joe healthy and always has a watchful eye on him. We feel very safe with Joe moving up and on into Kindergarten. We are praying Joe and Paul have a great and healthy year at school. Joe caught Paul's cold, but for now its minor with minimal sniffles and seems to be fighting his way through it on his own. He has energy and no fever so Dr.'s say business as usual. His numbers were elevated enough on Wed. 8/27 - (37.5 Hematocrit, 258 Platlets, 3.8 WBC and 1138 ANC) to restart oral chemos Mecaptopurine and Methotrexate at a lesser dosage and no chemo Sat.-Sun.

As if the start of Kindergarten wasn't exciting enough, soccer starts next Friday, practice and games all on Friday night for five weeks. They start with a minimal commitment for the 5-6 year olds - so works perfect for us!

Look forward to updating everyone after our 9/10 appointment and a school report!

Busy! Busy!

2008-08-24T20:51:00.000-07:00

Sorry to be so neglectful and not post an update for Joe, but we've really been into the swing of life after a long hibernation of staying close to home.

Joe's numbers on 8/13 were good enough to get his Vincristine and start his monthly 5 -day dose of Dexamethasone, but not to stay on his 1x weekly Methotrexate, and 1x daily Mecaptopurine. His Hematocrit and Platlets were good, but his WBC 1.8 and ANC 568 were low. The Dex naturally drives the ANC up so we were good to go on vacation to Priest Lake, ID but without many of our pills. Good and bad.

We head back for labs 8/27 to see if we are to resume the Methotrexate and Mecaptopurine at reduced levels based on his numbers.

He's been very happy and healthy. Making up for lost time all over the place. Our vacation in Priest Lake, ID at Hills Resort was fantastic. "Cabin Camping" as they call it was very fun and outdoorsy, lots of boating and lake time. The sandy beach was 50 feet away and lots of water activities followed. One of Joe's new friends had a mini-bike without training wheels. It's safe to say, after a test run in the driveway in Kirkland, Joe can now ride a bike without training wheels after practicing on the dirt trails in Idaho. BTW, big brother Paul can now water ski after some training and a variety of persistent parents! We met some great new friends that we look forward to traveling with again in the future.

Next up, "Chief For a Day" in Burien. Joe has been selected to represent Kirkland as the "Chief For a Day". They've made him a full uniform! There are 28 children representing 28 precincts in King County. We look forward to the police motorcade and "swearing in ceremony" Thursday 8/28. Our family will be picked up by squad car that morning and taken to the festivities!

Kindergarten starts 9/2! We are looking forward to more normalcy for Joe. Germs, germs stay away. Pray for smooth sailing!

Much Love,

Angie

2008-08-04T22:20:00.000-07:00

Happy Summer!

Reporting in to say Joe is doing very well. We were able to take our mini-vacation to Spokane as planned for a family wedding Friday 8/1. We were also able to visit Silverwood Amusement Park in Idaho! Roller Coasters, water rides, magic shows, fake tattoos the whole works! We also welcomed a new cousin Rhett Jeffery Huber the morning on 8/1, an overall great weekend!

Joe's numbers were still at an acceptable level, Hematocrit 35.0, Platelets 351, WBC 3.7 and ANC 1200. They want his ANC to be 800-1200 while on maintenance. We will not be in for blood tests until next week Wednesday 8/13. Hoping we stay above an ANC of 800 we will then be able to take our next dose of Vincristine (30 more doses by my count; 1x monthly until 2/2010).

If we are not at the levels desired (750 ANC) they then adjust the medication to get him where he needs to be. Steroids start that day again (8/13) for 5 days; the good part about that is they make his numbers shoot up, which gives him better ability to fight infection obviously and wiggle room as they come back down when he's on just Mecaptopurine and Methotrexate oral chemos which drives the numbers down.

Tutoring for Kindergarten is going very well, he's got upwards of 16-18 letters down, word sounds no problem! He's been working very hard at his catch up studies, we are super proud of him. A thank you to Stef Johnson for "Zoo-Phonics" package and his tutor Leighanne Metter for working so hard with Joe this summer.

As we speak he is at Suncadia Lodge in Eastern Washington with Papa, Yiayia and cousin William because it's their turn to vacation with Yiayia and Papa until Wednesday 8/6.

We hope to venture back to Idaho to Priest Lake Sat. 8/16 in lake cabins with Matt, Kristi and the kids, along with some new friends. We hear there are 4 families with boys 5 & 7 attending that week in our group!

You would all be over joyed with Joe's energy and enthusiasm. We sure are.

Thanks for checking in!

Angie

2008-07-25T23:23:00.000-07:00

We are happy to report Joe has been doing great since our last post. We did in fact begin Maintenance on 7/16. Starting Maintenance meant starting steroids again. Hate seeing those little buggers again, but it's only for 5 days a month.

The weekends activities were set to camp! Several of our college friends families gather once a year to set up tent in the backyard of the Calozza families home in Bothell, WA. Approximately 5 miles from our house! We set up the tent, sleep outside, get new batteries, the whole nine yards. Many of our friends still have infants, so they aren't eager to head for the hills just yet. As you can imagine all the kids very much look forward to this annual event, as do the parents!

Joe was very excited, but much to our dismay was a little tired and wanting to sit on Mommy's lap most of the time. He even retired early before the fireworks. He insisted on staying. I think he thought he was going to have immediate energy back at the same place he goes every year. When we got home, he went directly to bed.

Humm, not good. I decided after the nap we would go in and check his levels. At this point of treatment it's a tango to make sure the medications aren't too strong or too weak, or perhaps an infection was brewing? In March during Interim Maintenance the chemo was a bit too strong, so we wanted to make sure that wasn't causing his fatigue. After a family outing to the hospital for a finger poke we were pleased to find out his numbers were rather inflated. An ANC of 3300, WBC of 4.3, Hematocrit 35.0, and Platelets 351. All very good, inflated numbers are common when the steroids are being taken. No fever, no sniffles we were good to go.

Of course immediately after the news he seemed to have a renewed energy. Nonnie suggested perhaps he is growing, doing some catching up. None the less, the next round of steroids I plan to prepare for fatigue. I want to keep better notes of his symptoms as to not drive myself crazy with worry during these different medicine cycles.

This week was fabulous as Paul and Joe participated in Peter Fewing's soccer camp at Robinswood. Joe was a bit nervous as was I, but an hour in he definitely had gotten into the swing of things. High fiving all week, running around, competing, giggling, (a little arguing with "the other team", getting back into life. It's been a long time that he's participated in group play that wasn't good friends or cousins. It was very fun to watch. He was armed with lots of snacks and had every coach looking after him! They even gave him an honorary practice jersey. You see Day 1 he got a little upset he wasn't on the "yellow" team. Coach said "note to self, Joe gets a jersey everyday". This made camp run rather smooth. :) It was fun to see it's not just Joe that has special requests all the cute little 5 year old's did! Brother Paul impressed us all with his aggressive play the little animal was even sidelined for slide tackling, all the while watching out for his brother.

Mom is going to have to put the taxi light back on sometime soon this summer, Joe wants to go to "another camp with Paul". Very good news. Scheduled finger poke this week to make sure levels are where they want them. We are praying for several weeks upon months of high energy, giggling Joe!

Next up, Lego Camp at the Bellevue Club. Both boys are very excited, 3 hours a day of building, competing and learning Lego! We also have a Taylor family wedding in Spokane.

Thanks for checking in!

Angie

4 Peanuts

2008-07-15T15:13:00.000-07:00

Legoland was a bust Fri. 7/11. We still had a fabulous weekend here in sunny Seattle. It's like going on vacation around here lately! BBQ's, swimming, road trips to Eastern Wa., grandparents houses, there isn't any missing out on anything, we love that!

Joe's treatment was canceled Wed. 7/9 after we learned that although his Hematocrit was up 35.6 and his Platelets to a whopping 351 (normal levels!), his WBC was down to L1.7 and his ANC L289. With that WBC and ANC, going out of town isn't the best plan. If you catch a cold or flu you'd have to turn right back around. You're on germ lock down with ANC below 500.

Tue. 7/15 was the re-do to see if his numbers were up to start Maintenance. Again to start this you receive a spinal sedation Methotrexate chemo procedure and Vincristine IV chemo if your ANC is 750 or above. We were hopeful his numbers were up since there were no signs of sickness and his energy was good.

On the way in, he was giggling away with his brother in the back of the car and ate 4 peanuts out of a container (unintentionally) from our road trip over the weekend. We noticed this (thank god) as we were driving up the driveway to the hospital.

No eating before sedation. If they vomit due to nausea it could cause a blockage in the airway or pneumonia (started by fluid in the lungs as a result of vomiting during the procedure), so they take no chances. Procedure canceled.

We stayed around and got our results along with the IV Vincristine. We go back tomorrow @ 930a Wed. 7/16 to start Maintenance!! His WBC was up to L3.7 and his ANC was 1480. This is a huge deal, but a little anti-climactic due to the 4 peanuts.... :)

He begins his oral chemo's tomorrow for 2 years and 7 months (but whose counting?!): Mecaptopurine (daily), Bactrim, to prevent garden variety bacterial infections (M/Tu. weekly), Dexamethasone (2x daily 5 days a month), oral Methotrexate (1x weekly). Lot's of pills which Joe gladly takes in exchange for the minimal hospital visits.

They say we could potentially work up to coming only once a month to the hospial for the Vincristine once his blood work hits a predictable balance, this would be fantastic!

All of this is super good news of course, we are moving through this and getting healed!

Thank you for checking in, thank you for your prayers.

More on Joe's Maintenance soon, and hopefully our vacation to Legoland that we need to fit into a thankfully busy summer!

Ang

2008-07-08T16:16:00.000-07:00

Joe has done absolutely great since our last report. The weekend of 6/27-28 was finally fantastic weather. We had friends over to enjoy the sunshine and swim.

As we welcomed the end of "Delayed Intensification", we had to deliver on one of the many promises we've made Joe through his tears during the last 8 months. This one was to have a celebration with his friends at "Pump it Up" an inflatable jump facility. We had an"Army Party" Tuesday 7/1 complete with Army cupcakes and decor. The party was a huge success. At the end he motioned to me to begin & gather everyone to sing "Happy Birthday to Jo Jo". We had some confused people, but everyone went right along with it! A special thanks to all those involved in participating Joe's 2nd-5th Birthday party.

Joe had a great appointment Wednesday 7/2. His numbers climbed in several places ANC L505, Hematocrit L29.8, Platelets 251 and WBC L2.7. We need his ANC to take a hike up to 750 this week to be ready to start Maintenance. Maintenance will entail quarterly spinal sedation chemo treatments, once monthly IV Vincristine chemo treatments, several daily oral chemo's and biweekly blood tests. This translates to hopefully staying away from the hospital but twice a month for three years, and lots of pills. We can handle it.

Dr. Thompson was none too impressed with his "African Tan". He does get quite dark when he steps outside regardless of the block mother uses. We've been using 50 SPF for the kids, but in and out of the pool and changing clothes could probably call for some additional applications. The Dr. mentioned patients on chemo definitely have sun sensitivity even if they don't burn, we don't need any additional problems caused by over exposure to the sun. Look for Joe to begin fading back to olive before too long.

Thursday 7/3 marked a special day. We were asked to take a tour of the Kirkland Police station. We met all the officers, got behind the scenes tour of the station, and all the equipment. The boys were extremely impressed. They have a picture of Joe on the bulletin board at the station! People were genuinely pleased to meet both Joe and Paul. We went to dinner later that night in Kirkland and saw some of the officers, Dad was rather impressed with the amount of high fives Joe and Paul received from those that protect. Pretty cool!

4th of July Paul and Joe were asked to ride in the Kirkland Parade with the Kirkland Police department. They had a float but they opted to ride in the squad car. We got some great pictures that we hope to post of that. Many friends and family greeted Paul and Joe along the sidewalks of Kirkland. Definitely a day to remember. It didn't stop there however. We went to PT and Non's with Yiayia and Papa, and several cousins and friends and had a BBQ and of course lots of daytime fireworks. We came home to house full of friends and family. There were at one point 21 little heads below the age of 8 bobbing in the pool. We all couldn't of been more pleased to see the kids having a great night. The evening fireworks show ended the night exactly how we felt, with an exclamation point!

We have a slow week as dad is fishing in Alaska with PT and work friends. Beginning Maintenance hopefully on Wednesday 7/9, so we can be off to our mother of promises - Legoland on Friday for the weekend.

Ahhhh, then it's back to reality. Someone has some catching up to do if he plans to join his Sacred Heart Kindergarten class. He'll be hitting the books for the rest of the summer, but don't worry it's not more than an hour or so 3-4 days a week, still plenty of time for fun!

Many thanks for all the prayers you've sent our way, we couldn't of come this far without them!

Much Love

Ang

Up, Up and Away!!!

2008-06-27T13:23:00.000-07:00

In the previous entry we discussed the very real probabilty that our Hero would have to undergo a blood transfusion as part of the aggressive treatment he's been undergoing. Well, evidently someone forgot to tell him as his superhuman body decided this would not be necessary. His drops in Hematocrit, Platelet count and ANC were minimal and his WBC actually has already started going back up. The great report is reflected in JoJo's activity level and his overall happiness. Here's to this leading to a great summer! As always, everyone's thoughts and prayers have been golden so please keep them coming! Stay tuned...

Barely Breaking Stride

2008-06-19T11:56:00.000-07:00

Our Hero continue his march through these tough days of treatment with his head high and proud. With the help of his nausea meds every six hours, a lot of quality playtime with his big brother and his cousins, the Xbox 360 and of course breaks for some food, he was able to really enjoy the sunshine over the weekend.

Tuesday Joe headed back to the hospital for a few blood tests and of course more treatment. The numbers were encouraging (Hematocrit - great at 30.6, platlets were down to 168 and ANC is still solid at 768) but Team Taylor is staying cautiously optimistic and are aware of the nature of the treatment and know that numbers going down are normal and blood transfusions are normal in this stage. Tuesday did bring a bit of sensitive skin (his dressing needed to be changed three times due to discomfort) but this may be as much due to the fact that even with his deep dark tan, the chemo has made his skin extra sensitive. Mark this one up to lesson learned and extra precautions next time he's running around outside.

Now, a little note from Mom...

We are so pleased that Joe is happy and comfortable! Wow, thanks for thinking and praying for him through this. We expect this week's medicines to be impacted by last week's doses. But we should be able handle what comes our way. Thanks for thinking and caring for us.

As always thanks for the thoughts and prayers, keep them coming!!! Stay tuned...

"Once more into the breach..."

2008-06-12T13:25:00.000-07:00

With the greenlight given from the doc, his Xbox under his arm and confidence in his stride our Hero returned to the hospital to start his treatment anew. Although not necessarily looking forward to the treatment part, he was looking forward to get an audience for his gaming. (The staff there said Joe was the first in the clinic's history to take Cytoxan while playing an Xbox.) All parties were happy to see that the Zofran and Reglan (anti-nausea medications) seemed to work really well when partnered with a bit of Bendadryl mixed in because the Reglan can result in the shakes. He seemed pretty impervious to it all though, at one point even being chastised for running around with his port needle in. :)

So it is with this trip that the not-so -un stuff begins again. The nausea should ramp up as the days go and everyone knows the fasting prior to treatments aren't fun for JoJo. But Mom is pleasantly surprised to see he is making good, sugar free food choices on his own. Ten days and counting with the strong, tough treatment so keep on, keeping on with the prayers and positive vibes. Stay tuned...

Patience Rewarded! Wait... you call this a reward?!

2008-06-10T19:20:00.000-07:00

After a bit of what Mom is calling a 'vacation,' our Hero's ANC numbers have climbed back up to 923, which easily passes the 750 he needed to reach to resume his treatment. Although a big relief to all parties, the extra pokes for his tests haven't done much for his anxiousness but with this extra experience Team Taylor has been able to discuss and come up with a good routine that JoJo has essentially laid out for himself. He has taken a very active role in calmly determining that the numbing cream used before the needles is definitely the way to go. Joe remains in charge of his own body, as well he should.

Today our Hero heads back in to the hospital for a full day admit of Cytoxan but don't worry, he doesn't go alone - the XBox will be joining him. Our Hero loves to play while everyone is watching and then have everyone else play so they can see firsthand how good he is as well as to show the adults, there are a few things kids can do better than them. Even though Team Taylor knows the next little bit is going to be pretty tough, but they eyes remain trained on the prizes - 1. A clean bill of health for JoJo and 2. A much awaited trip to Legoland once the treatment is done and the numbers are back up. As always folks, thanks for keeping the prayers and positivity flowing! Stay tuned...

Sometimes it takes a bit longer for the sweet 'fruit' patience bares, to ripen

2008-06-02T12:00:00.000-07:00

As the title of this entry would indicate, our Hero is closer but still not quite ready to start the next treatment protocol. His ANC climbed a bit to 568 but hasn't quite reached the magic 750 that is required to continue. Patience, young Jedi, patience. Although the numbers are reflecting it a bit more slowly than everyone would like, JoJo's energy is returning, which is obviously a welcome sight. Everyone just is very eager to make that final push to get the 'yucky stuff' finished! But while his body strengthens, Joe further prepared for the final pushes of the treatment by doing a little proactive shave. As his hair was falling out at a pretty quick pace, he opted for the Dad haircut and he looks as handsome as ever.

It's important to recognize that Team Taylor isn't limited to just one Hero. This week big brother Paul was recognized for being a bit of a hero himself. As those with big brothers know, they aren't always 'heroic' but as those that have big brothers also know, they can be pretty great too. Paul showed a bit of that greatness this week as a normally shy and soft-spoken Paul, spoke for ten minutes in class sharing the story of his Hero, his brother Joe. He told the class about all the needles and the pain and what his little brother was doing to beat this condition. As we've said before, Leukemia picked the wrong guy to mess with - but not only because of his heroic nature but because of the strength and heroic nature of those around him, people like his big brother Paul.

Keep the prayers and positive thoughts coming for healthy livin' and high numbers! Stay tuned...

UPDATE: Just a short little update to let everyone know everyone is getting tired of flexing our patience muscles. Our Hero's ANC numbers are still slowly creeping up but not enough to start and in addition the fact that his WBC looks to be going down a little bit has Team Taylor a little concerned as that usually results in the ANC numbers going down as well. Another set of tests on Friday, hopefully more information will be gleaned then. Other than that JoJo is feeling pretty good and looking good so, double up on the prayers and positive vibes. As always... Stay Tuned...

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

2008-05-21T13:41:00.000-07:00

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!

2008-05-15T13:16:00.000-07:00

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!

2008-05-09T12:36:00.000-07:00

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...

2008-05-01T13:19:00.000-07:00

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

2008-04-29T12:58:00.000-07:00

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!

2008-04-23T12:09:00.000-07:00

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!

2008-04-17T11:31:00.000-07:00

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...

On Target...

2008-04-09T13:15:00.000-07:00

Our Hero continues to avoid any bumps in the road and is doing well - happy and busy! Between baseball practice, Legos, riding his bike and his scooter (not to mention a big trip today to Great Wolf Resort) - JoJo barely has time to be annoyed by taking his meds. Team Taylor hopes to have these positive signs affirmed by Joe's labs that are being done today.

If all goes well and everything remains on target, Joseph will re-engage the full treatments again on April 23rd - so needless to say, everyone is trying to really enjoy the break before it fires up again. Once the current phase is completed it will be on to the 50 day treatment phase that hopefully will start on time in mid-June. Although, Team Taylor has learned the up and down and somewhat unpredictable nature of JoJo's treatment schedule, everyone is hoping for a good long patch of smooth sailing so keep the prayers and vibes coming... Stay tuned...

Back on Track!

2008-03-31T11:16:00.000-07:00

Our Hero's numbers appear to back on the rise again! The labs showed that all his numbers were up and as confirmation that no good deed goes unpunished, for all his efforts of getting strong, he was treated to Spinal Methortrexate sedation (along with Vincristine and antibiotics for good measure.) But then, in ways that only Mom's can, true reward was given when Joe was off to Blue C Sushi at University Village to happily watch his food arrive on a conveyor belt.

Now that Joe's numbers are up and his body seems to have recovered from his bug, he will be starting back up on his chemo pills (easing back in with half doses.) The goal now is to get that break from the hospital trips JoJo thought he was going to get before. If all goes as planned he won't need to go back until April 9th and after that, if everything continues to remain on track Joseph will be ready to start Delayed Intensification on April 23rd.

Even with the bumps in the road (the bugs, the 5 day, twice a day, steroids that tend to anger Joe - although they haven't caused the hunger and the weight gain this time) all of Team Taylor feels blessed and very happy for things to have gone as smoothly as they have. You only need see one very sick child at the hospital to know and be thankful for what our Hero has been to accomplish so far. Heck, people can't believe he hasn't even lost his hair. As always, thank you and keep the prayers and positive vibes coming! Stay tuned...

Bump in the Road...

2008-03-19T21:40:00.000-07:00

Well, the plan was for our Hero to get a couple of weeks off from going to the hospital, but sometimes germs and viruses have other plans. That was the case when Joe caught a bit of a bug on Sunday and, per protocol, had to head into see the doctor when he started to run a bit of a fever. After testing his numbers and revealing ever thing as strong they sent JoJo home to rest.

But as this rollercoaster ride goes sometimes, Team Taylor got a call Monday requesting Team Taylor's attendance back at the hospital as Joseph's blood cultures came back positive for infection, but after reviewing the x-rays they had ruled out pneumonia. A drip antibiotic was started to work on the infection and although his ANC had gone down to 659 (from 2000 the night before) there was no fever present. Per protocol, our Hero was admitted to keep an eye on him and his numbers for about a 48 hour period. But after good test results, his ANC up to 900 and climbing, Joe was sent home with his antibiotic IV to finish off the bad stuff. His energy remains high and positive but JoJo could really do without people poking him with needles all the time, after all his Xbox 360 just came back from repair and he has some catching up to do! Keep the positive thoughts and prayers coming and stay tuned...

Piece of Cake!

2008-03-16T18:16:00.000-07:00

Our Hero is making the Interim Maintenance phase of his treatment look like a walk in the park. Whether he's knocking back his meds with nary a complaint, going back to school, preparing for the start of his baseball season or bringing back great lab numbers (Hematocrit: 35.6; platelets: 245; ANC 1660) he is moving right along. Team Taylor has basked in Joe's high energy and good appetite.

But it's not just his health that's been good; his memory is sharp too - as evidenced by his sudden awareness of where he was headed when he headed past University Village on his way to a finger poke to run labs. Needless to say, he's not experiencing any weakness in the vocal cord department either. All was made a little easier to swallow when Mom was able to assure him that he would not have to be going back for another '14 sleeps.' (That's two weeks for those keeping score at home.)

Although everyone is enjoying Joe's increasing strength, health, appetite and energy levels, the management branch of Team Taylor is starting to struggle with how they are going to be able to explain the purpose of the challenge and overall yuckiness of the Delayed Intensification stage given that he will be feeling good. Everyone is hoping Lego's comes out with a whole new collection of Star Wars themed toys as well as a few new Star Wars video games. If anyone knows George Lucas, please put in a call on Joe's behalf. ;)

As always, keep the great positive vibes and prayers coming. Stay tuned...

Now on tap... Interim Maintenance

2008-03-06T21:26:00.000-08:00

Now that our Hero has fully rebounded from his bout with the flu and challenging round of treatments, he is ready to start the next phase of his treatment, Interim Maintenance. This is a phase that last roughly two months not including a week of recovery. The theme of this part of the treatment - medicine, lots and lots of medicine. Below is a little break down of what Joe is washing down with his juice, meals and snacks:

Bactrim - an antibiotic that he takes every Monday and Tuesday morning and evening. This will help fortify JoJo against pneumonia and other respiratory problems.
Methotrextate - this is six and a half pills of a chemo medication that is washed down every Wednesday night with lots of juice.
Dexamethasone - this is a steroid that Joe received neither from Roger Clemens nor his trainer that he will be taking 2.5mg of five days out of every month in the morning and the evening. For all those who remember, the last time he took steroids, our Hero had the appetite of 5 Joe Taylors (and that's really saying something) and ended up gaining 12lbs. This time that hasn't been an issue, but instead resulted in an irritable boy who has trouble staying asleep. But then again, who of us wouldn't be a little irritable if a pill we thought was going to allow us to eat like crazy wasn't doing that anymore?!
Mecaptopurine - this is another chemo medication that JoJo will be taking Monday through Thursday (1 tablet) and Friday through Sunday (1.5 tablets.)

In addition to the meds, Mom also thinks he'll have to take IT Methotrexate (Sedation Spinal) one a month during the phase - but she'll be checking with the Team Taylor Medical Staff to verify that. But even with all of that, combined with Joe's lack of fondness for taking pills, he's been heroic and taking them like the champion he is and it's everyone's hope that the next time he goes in (not until next Wednesday) that the simple finger poke he's getting shows that his numbers are still doing great and he won't have to go back for two weeks! That would be a BIG boost to JoJo's morale for sure.

Per the doctor's suggestion, Joe has started going back to school a little and although it was a little rough at first, he seems to be warming to it a bit and empowering him to have a say in the length of his stay has been a help. But after a long weekend of Joe stating he didn't want to go back to school, he has begun telling stories of his class and his friends. He's rapidly returning to the active and happy JoJo to everyone's delight.

Thought we might take a moment to give a bigger overview of where we are in the process of our Hero's treatment and what is next. After he completes this phase is the challenging and appropriately named Delayed Intensification which will last for roughly two months as well. It will be a tough phase but the reward will be a return to semi-normalcy when our Joe enters the final stage - Maintenance. This is a three year phase that consists of the medications listed above.

As always keep the prayers and positivity coming and stay tuned... Mom said she's going to send along a picture of the special haircut Dad gave our Hero. :)

The Charge Begins Anew...

2008-02-29T14:25:00.000-08:00

After what Mom describes as the "longest month of their lives," great news came in on our Hero's most recent tests. His ANC went up to 1344, Hematocrit to 31.6 and his platelets were up to 244! With the docs go ahead Joe had a treatment done on Wednesday and now just medication (lots of pills) for the next two months. After which JoJo will be going in to see the doc for a blood test and then two weeks later in for some treatment with sedation. Keep the thoughts and vibes coming!!! Stay tuned...

The Climb begins again!

2008-02-14T11:50:00.000-08:00

As was noted in the update to the last post, our Hero's ANC numbers jumped up to 270 which was fantastic news. Joe's hematocrit was up again (32.6) and his platelets were up to a healthy 291. Although his WBC remains low at 1.5, the hope and expectation is that as this is determined by a formula which includes the ANC, this will improve exponentially with the improvement of his ANC. Mom very appropriately describes the improvement as a definining moment as it marks the beginning of the 'Interim Maintenance' phase which is a real sign of progress that has felt a long time in the coming. Additionally, when JoJo's numbers reach the appropriate levels it will be time to bid adieu to the "study" as the next courses of treatments will be the standard courses. Let's keep those great vibes and prayers coming to get all the numbers up into not only acceptable but very healthy ranges!!! Stay tuned...

**UPDATE** Joe's numbers went up a bit more in his last lab work. His ANC now up to 348, which isn't where it needs to be to start the next cycle of treatments. But it was up enough for Mom to 'lift the bubble' a bit and let our Hero get some good quality play time in with his cousins and big brother Paul over the weekend. Stay tuned...

The Dog Days of Winter

2008-02-11T12:34:00.000-08:00

We all got a little spoiled. Everything had been going so swimmingly that we expected to have nothing but glowingly positive results and reports. But if Leukemia was all peaches and creme, our Hero wouldn't be going through all the stuff he's been going through for the last five or six months. So it is with that that Team Taylor has encountered a slight slowing to the momentum that has been gaining so much speed. JoJo's numbers have been yo-yo-ing a little bit over that last couple of days. Specifically we can see the ANC go from 75 to 138 to the 99 he's remained steady at for the last two labs. (Keep in mind 200 is the magic number to remain a bit more solid for fighting up bugs, bacteria and the like.) The medical staff component of Team Taylor is not concerned about it as they report that this is common to see this after an intense chemo session followed by a bad flu bug.

That being said, the family component of Team Taylor would do virtually ANYTHING to see those numbers go up. First and foremost, we want them up so we can all be a bit less concerned about Joe being susceptible to any bugs or viruses (not to mention to stop the stress of going in for labs every two days.) Joseph is no dummy, getting poked with needles isn't fun and since he is feeling fine he doesn't understand the necessity for all this nasty business. Additionally all the people working in the toy factories all over the world would like to see JoJo's numbers go up so they can stop working double shifts that are required to keep the toys coming to reward our Hero for his bravery. (Mom is not a big fan of using the toys as behavior modification tool but every hero has one soft spot and with as angry and upset as Joe has been with this stuff, sometimes it's all that works.)

So with that, for the sake of our Hero, his family, his friends, yourself and the frantic toy workers all over the world, please roll up your prayer and positive vibe sleeves for our Hero, let's get those numbers back up so he can get a bit of a break from the hospital trips and everyone else can rest a bit easier knowing he's a bit more resistent to the bugs that having been hammering everyone else. The next trip to check the numbers happens on Tuesday so stay tuned!

**QUICK UPDATE** - The numbers are in and our Hero has gone from an ANC of 99 to an ANC of 278. Way to go JoJo!

Slowly but surely...

2008-02-05T22:05:00.000-08:00

The focus for our Hero and Team Taylor remains the lab numbers. On Saturday Joe's numbers went down a little to 30ANC and .8 WBC. But never one to remain complacent JoJo's numbers seem to be making the climb upward now with the next set of labs happening tomorrow (Wednesday the 6th). Everyone keep your fingers crossed that the ANC climbs into that safer 200 range so that Mom can stop holding her breath.

Another thing everyone would like to see go up a bit is Joe's weight. What sounds like a luxury to the rest of us has gotten to be a bit of a concern for Team Taylor. Although he would look great in all the most recent fashions on the runway, everyone would much rather see him get back up to his "healthy, climbing trees, wrestling Paul and rolling in the mud" weight. Mom says if Legos were edible, this wouldn't even be a concern. But since they aren't, the focus is on getting JoJo feeling healthier (i.e. no flu) so his famous appetite returns.

Well it appears as if Mom and Dad's concern about getting our Hero to take his antibiotics was warranted. Whether it's his declarations of that he feels better and doesn't need it or his assertion that he does not care too much for his physician, the administration of the meds has been a challenge to say the least. So, who do you turn to when Joe refuses? Well, big brother Paul of course! Paul has begun to lead by example by taking placebos of water with cherry juice with JoJo. As the song says, 'he ain't heavy, he's my brother.' It's a good thing pride is not an exhaustable resource because if it was Mom and Dad would be all out of it because both of these boys are worthy of tons of it.

Just a reminder, lots of prayers and positive vibes that our Hero's numbers continue to climb along with his weight. As always, stay tuned...

Casa de Taylor > Hospital

2008-02-04T14:28:00.000-08:00

On Thursday our Hero returned home from his little 'vacation' at the hospital for his flu bug. The docs said that it is actually safer for him at home than it would be to stay at the hospital. Confirming something JoJo already knew, home is better than the hospital. A feeling he made very visible by spreadng his arms and happily declaring to his brother, "I'm home Paul!" Although happy to be home, Team Taylor was not relishing the task of getting Joe to take is three antibiotics twice a day.

As if Mom didn't feel anxious enough when Joseph got the flu and had the low numbers (38 ANC and .9 WBC) from the treatment, word came down that cousin Brock had gotten one chicken pock (if that is indeed the singular form of chicken pox) from the vaccination he received. A flurry of phone calls ensued to first determine who had 'touched Brock' (Blanca, Nonnie and Dad were guilty) and then a flurry of phone calls to the docs to determine the risk to Joe. The medical team doesn't seem too terribly concerned and didn't think there was a significant chance of contagion or transmission. But just in case, keep that in mind when saying your prayers for our Hero.

JoJo and Team Taylor will be heading into get labs done ever couple of days until his ANC and WBC return to acceptable levels so, as always, stay tuned...

Mind, Body and Spirit

2008-01-29T20:42:00.000-08:00

First on the list, for our Hero this week was 'the body.' He continues to do very well, even after last week's big treatments. Always sharing and in an effort not to let his little brother get too big for his britches, Paul kindly shared his cold with Joe. But even the common cold is thus far finding JoJo a formidable foe as it doesn't seem to be hitting him as hard as it's hitting Paul. There isn't any fever thus far and it hasn't gotten to his chest, right now just manifesting itself in the form of the sniffles. Here is to prayers and positive thoughts that that is as far as it gets and goes away quickly - for both the boys.

Next on the docket for JoJo, was 'the mind.' The doc shared with Team Taylor that the next couple of months were going to be much easier on our Hero, she suggested going back to school as the blood levels would allow. That information coincided with a trip that took Mom and Joe near school and Joe asked if he could visit his class. Needless to say, he was welcomed like... well... a returning hero. His hunger for knowledge immediately piqued and he quickly asked Mom if she could leave so he could "work for a while." Back to it then professor...

Last on his list was 'the spirit' which showed itself in three ways. First, in the form of learning what makes this less than fun process a little more tolerable for JoJo. In a word - control. When you are always being told where to go and what to do, a little empowerment can go a long way. Whether it's determining whether he takes his medicine crushed or whole, take his temp in the ear or under the tongue or choosing what to eat - any control over this situation can be of the utmost importance. Second, Team Taylor has found that spirit is strengthened by a familiar voice and face in the face of Nurse Jean (sister of Mom's friend Jenny.) So comforting was her presence that Joe asked to 'stay' and if Jean could help him next time too. Finally, what is a strong spirit if you can't share it with others in need, which Joe did by playing a bit with Hayden, a new patient who seems to be just starting the process. (Hayden was greeted with uproarious laughter when he asked JoJo if he liked Star Wars.)

The schedule for the week is pretty short and hopefully easy with labs and Vincristine tomorrow (Wednesday the 30th.) But just a reminder, good vibes and prayers for an end to the cold bug! Stay tuned...

**UPDATE** 1:00AM - Tuesday: It looks like the cold bug had a little bit more bite than hoped and JoJo has a bit of a fever so he was admitted and will be in for 48 hours. Keep the prayers and positive thoughts coming...

**UPDATE #2** 7:30 - Wednesday: The hospital confirmed Paulie had generously shared his Influenza B with little Joe but it was caught early and treated with a bit of Tamaflu so he is still in the hospital but feeling better (playing vids with Dad) but served as a good reminder that even though JoJo's spirit is superhuman his young blood is still a little susceptible to all the chemo he'd been doing. But the good thing is he has a long break before the next set of treatment so his levels will be getting stronger and stronger each day! Keep the prayers coming while our Hero rests up a little in the hospital to keep clean and safe and puts the end to the flu bug...

ENCORE! ENCORE!

2008-01-24T13:29:00.000-08:00

No one can sing the praises of a boy louder than their Mom, here is a communique from our Hero's Mom:

This child is amazing.He really worked through that two weeks of intensive chemo really well. We were able to maintain control of vomiting and nausea, along with other aches and pains. He had to go in daily for a hour of hydration and then take the medicine for two weeks. It is over! So exciting.We went in yesterday for our PEG (sober shot in the hammy both legs) and Vincristine (IV Push). None of us got any sleep due to the anticipation of the hurt that was to come. We drugged him up good, and wouldn’t you just know it, they were running an hour late. We finally got in, completely sauced as we were hoping he would be for the PEG but was for his labs. No alarm on this one. He actually asked me at a point a half hour later. Did I get my shot yet? He had to lift up his shirt to check to see if his IV was in his port to remember. That’s the wonderful thing about that Adivan, it sauces you up, gets rid of a lot of the anxiety, makes you drunk, and also makes you forget.We had a great appointment with the dr. and she informed us that this next phase of treatment beginning roughly 2/6, after a couple of weeks he should be good to go on vacation, school and a variety of things he hasn’t been able to do since treatment is mainly oral meds and his levels should be “up”. He is doing really well. His unbelievable Italian/Greek hair is putting up a fantastic fight. Dry as a haystack, 1/4 left, but still hanging on for awhile longer. He knows now that it is going, so we feel better about that.We finally got to the clinic for the “shot” and were told that his levels were pretty low (to be expected after two long arguace rounds of chemo, and he needed to stay for a platelet transfusion and blood transfusion. (He was having headaches over the weekend that we attributed to the Cytrabine, but the Dr. actually said that is attributed to the low, low Hematocrit 16.2). Ummm, that adds an automatic 1.5 wait for the blood bank to bring his match and a mere 8 hours to the visit. We checked in at 930a and left at 745p. Long boring awful day.After he received the platelets they gave him his “shot”, he took it well as can be expected. They had me hold him face down into my neck so he couldn’t see the two nurses coming at him. When it was done through the tears he asked “why is everybody being mean to me”. The nurses got him a Star Wars ship. Unbelievable that they know just exactly what he likes and loves. Sort of tells you how much we are there.Today it was as if nothing was happening. Actually Paul has been sick with a fever, and he is the one that seems like he has been through the ringer. Joe is on top of his game. I guess it’s the new blood. He is “studdly” as dad says.We decided we more than likely (after looking at our treatment maps) that we probably just completed the longest hardest part of what Joe will have to face in the next few months. The “Study” arm of the phase will be over next week, and we are back to Standard treatment for the remaining 3 phases, Interim Maintenance, Delayed Intensification, and ahhh...Maintenance.Thank you to everyone for the prayers to our Joe and our family. They are truly working through him and us. We are so proud of Joe.

Stay tuned...

The Force is STRONG with this one...

2008-01-16T12:02:00.000-08:00

Our Hero continues to make big positive strides. He has weathered the most recent treatment cycle with limited nausea, no fever and no vomiting. Mom thinks it confirms that he was sick the last time he went in for treatment but it could also be aided by the military-like precision and timing of the nausea med dispersal.

But let us keep one thing clear, just because JoJo is tough as nails as continues on his quest to rid himself (and who knows, maybe the world) of this illness, it doesn't mean he always has to enjoy it. Needless to say, on Monday, he let his displeasure about getting poked known. But after tomorrow, Joe won't be 'accessed' again until next Wednesday - which will be a big poke day if the blood draw allows - it will include a PEG poke in each leg... without sedation. Mom isn't necessarily concerned about the pain, but more the memory and fear of it. So slip in an extra prayer for that.

Everyone is very pleased by how well Joe is doing and he is working with his therapist on trying to wrap his young mind around the idea that his hair will indeed come back and it's not a big deal. Plus some of the coolest people were bald... Michael Jordan, Yoda and of course Dad. So there is no need to let it weigh on his already burdened shoulders.

Onward our Hero marches - only two more Cytrabine days until late April/early May! That's got all of Team Taylor excited and means the next phase is just around the corner. As always, everyone on Team Taylor is thankful for your thoughts and prayers as they certainly seem to be helping JoJo tolerate this stuff so well. Please keep them coming! Stay tuned...

Getting on with the keeping on...

2008-01-09T13:06:00.000-08:00

Although our Hero felt more than a bit anxious about his poke on Monday (and let everyone on the 6th floor of Children's Hospital hear about it,) his numbers stayed steady where they needed to while improving in the areas that needed a boost (platelets - 308, hematocrit - 385, WBC - 9.8 and his ANC jumped from 436 to 1630!) So with those numbers, Joseph was cleared to jump back into the treatments yesterday and did very well.

He didn't have the tough vomiting and nausea like he did the last time which came as a great relief to everyone. JoJo actually enjoyed his time at the hospital as the captive audience of Mom, Yiayia and Aunt Kelly provided a lot of attention - he enjoyed it so much that he didn't want to leave as he knew home wouldn't be the same. (If that's not progress, who knows what is?!) Although the medical folks say he will definitely feel a bit of nausea in the days to come, Team Taylor will do their best to alleviate with a lot of hydration and a steady, precise and punctual administration of the anti-nausea meds.

Joe will be back at the hospital today for hydrating and Cytarabine for 3 days on, then 3 days off and then 4 days on. But the good news is there is no more heavy nausea inducing Cytoxan until perhaps April!

Mom is back to happily crossing treatments and medications off the calendar, Joe although very much back to his old fun, caring, loving self, is riding out the wobbly stomach on the couch but Team Taylor knows he's the rubber band man and bounces back quickly once the medication effects fade. He's a hero after all. :)

Keep the prayers and thoughts coming as always... stay tuned...

Resolution has renewed meaning in 2008

2008-01-03T14:23:00.000-08:00

A hero's Christmas isn't much different than any other boy or girls Christmas, he played with his brother and his cousins - lots of Lego's, video games, movies, etc.. Needless to say the only place bristling with more activity was Santa's workshop. Although it was great having all the kids playing at Joe's house, it did expose some challenges that we'll need to be addressed as he continues to get better. Mainly, as Mom put it, JoJo has gotten 'a little emotionally spoiled.' He has pretty much had his run of things (and rightfully so) so when things didn't go his way he let it be known. Team Taylor has to give extra special thanks to Paul and all of Joe's cousins who are trying very hard to understand why the rules are a little bit different for Joseph at the moment.

If you all remember, our Hero was scheduled to kick off another round of treatment on New Year's Day. Well, although his Hematocrit was up to 35.4 (that means his body is producing red blood cells,) his platelets are up to 347 (and clotting on his own at safe levels) and his WBC is at an acceptable 2.8 his ANC fell to 436 which if you remember makes it tougher for JoJo to fight off the germs. Because of that, the treatment had to be pushed back to January 8th (if his ANC comes back up.) The nurses tell Team Taylor that this is par for the course. As his body starts doing it's own work again, levels will rise and fall and it requires a bit of patience and flexibility. Just a bit frustrating, as everyone would like to get this phase over as quickly as possible.

Joe continues to struggle a bit with nausea since his last treatment. A bit of vomiting and a pretty limited appetite has resulted in a loss of eight pounds. Even though he's looking a lot more like the Joe everyone is familiar with and he doesn't get too scared or upset about his stomach getting... well... upset... everyone would like to see the weight loss and the nausea stop.

Christmas morning Team Taylor also noticed that, according to his pillow, it's not just weight JoJo is losing, his hair is going too and by all accounts should be all gone by the end of January. Mom says it's thinning out evenly and looks like it just wants to come out. But unlike Dad's, our Hero's hair will be back. :)

Thanks to everyone for keeping Joe and Team Taylor in your thoughts and prayers, please keep it up! Here's to hoping the numbers are back up and JoJo is ready to start crossing off treatments on the calendar again. Stay tuned...

Getting stronger and stronger...

2007-12-22T12:42:00.000-08:00

Our Hero continued his great week, going out and mixing with the masses a bit more. Well, OK, not quite the 'masses' but he is getting out of the house a lot more for things other than treatment and such. Included in that was Christmas at the Taylor's which, Joe like any other boy or girl, loved. That is until it was over... but then was quickly reminded he'd get to do it all over again at Yiayia and Papa's on Christmas Eve.

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...

'Tis the Season...

2007-12-17T14:03:00.000-08:00

Mom put it best in a recent communique from Taylor Manor:

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!

Keeping the momentum rolling...

2007-12-12T12:32:00.000-08:00

So far so good with the treatments this week. Whether it's due to no Cytoxan this times, the extra IV fluids, larger dosage of the anti-nausea meds or that our Hero was a bit under the weather last time - this week's treatment have been much easier on Joe. These things along with a long blood transfusion gave JoJo lots of energy which equated to the return of the rambunctious little man we all know and love. (It even resulted in a bit of smiling/giggling/flirting with the nurses - which was a first as normally our Hero has been all business when it comes to treatment.)

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...

You can't keep a good Hero down...

2007-12-10T10:08:00.000-08:00

After a bout of fever and some nausea our Hero started to bounce back as the week went on, energy elevated, the giggle meter started to tip into the red and even some of that JoJo fire we've all come to know and love flashed in the form of some brother-on-brother conflict. (Mom never thought she'd be happy to see that happen.)

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...

Even Heroes have tough days...

2007-12-04T12:31:00.000-08:00

After riding an extended streak of relatively incident-free days, our Hero hit a little bump in the road when late last week he woke with a bit of a fever. Admittedly the bump was a bit more significant for Mom and Dad as this has been the first fever Joe has run since the start of his journey. The fever was on and off so not too terribly troublesome but to be on the safe side JoJo spent the day/night in the hospital on Friday where he slept almost all the way from 2pm to 9am Saturday morning. Joe's roomate was an 11 year old boy with a brain tumor who was very sick so needless to say, Team Taylor left with renewed perspective and an odd feeling of gratitude that Joe's illness is being treated and he continues to respond well.

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...

Right on Track

2007-11-30T11:11:00.000-08:00

The results are in from our Hero's "Day 28 tests that were run last week. Here are the details for you in easy, USA Today bullet point format:

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!

Our Hero Gives Thanks

2007-11-26T18:04:00.000-08:00

Like a king on his throne, Joe enjoyed family, friends and festivities from the recliner at Yiayia and Papa's house. He enjoyed watching his cousin Luke exhibit some of his JoJo like characteristics, running around doing what he could to keep the level of chaos at a level that pleased Joe. Everyone is certain, Joseph will be back to leading the charge at the next Thanksgiving.

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!!!

And One Hero United the World...

2007-11-21T19:52:00.000-08:00

... well ok maybe not the world, but he certainly has drawn a lot of interest from doctors all over the country (from LA to Boston and destinations in between)! A big thanks to all the folks who have reached out to their network of friends and acquaintances (not to mention acquaintances of friends and friends of acquaintances.) In short those with experience (professional or otherwise) seem to all agree that the clinical trial rout is a great way to go and amongst the variety of folks - positivity abounds. (Just think how positive they would be if they had met Joe!) Thanks again to everyone.

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!!!

Six Degrees of Healing

2007-11-19T20:30:00.000-08:00

As was mentioned at the end of the last entry, Team Taylor is eager to collect as much information and perspectives as possible as it pertains to the medicines and treatment stages and paths. Below is an excerpt from an email from the Executive Branch of Team Taylor (i.e. Joe, Paul, Mom and Dad) and it covers who can help most as well as educating all of us on the road map for our Hero's treatment:

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!

There really can be too much of a good thing

2007-11-18T17:34:00.000-08:00

Live and learn. After a trip to the doc on Friday, Team Taylor were chastised a bit for being a bit too free and easy with the pasta, the chips, the cheddar cheese snacks, etc.. Our Hero actually ended up gained four pounds in a week. Although we all love JoJo, there can be too much of a good thing too fast. But none of us should be to tough on each other about this - after all, they neglected to hand Mom and Dad the fully detailed manual for this stuff. But that said, the focus will now be on disciplined diets (including Mom building a fruit and vegatable stand that would rival Pike Place Market) - 3 meals a day and only 3 snacks. Salt has already been eliminated along with sweets (which Joe cut out of his own diet - completely on his own because he thought it was making his tummy big. But now we know that that was most likely due to his spleen beginning to swell due to the illness.) Knowing is half the battle and Team Taylor is on the job, this will get rectified quickly. Live and learn.

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...

Remaining focused...

2007-11-14T09:45:00.000-08:00

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!

Test Day

2007-11-10T13:23:00.000-08:00

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!

A little bit of rest and a refill...

2007-11-08T18:14:00.000-08:00

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!

Our Hero's Journey Continues...

2007-11-07T09:47:00.000-08:00

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...

And now we wait... for a bit longer...

2007-11-05T19:47:00.000-08:00

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...

And now we wait...

2007-11-02T21:07:00.000-07:00

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...

A Hero's work is never done...

2007-11-01T10:45:00.000-07:00

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...

Some call it Casa de Taylor, he just calls it home...

2007-10-30T20:43:00.000-07:00

Another good day and night for our returning hero, he successfully came off his IV and no illness from his treatments! Aunt Kristi arrived to help the packing and travelling portion of the day, which was a monumental undertaking when it looks like a ToysRUs exploded in the room. But being so brave and strong can take it out of you too and JoJo was a bit slow, a bit tired and a bit sad when he finally had some time to decompress upon returning home. Enter big brother Paul Tor, home from school ecstatic to see his little brother home and his family back in order. He had enough excitement and passion to reignite everyone. Just a big brother looking out for his family, a hero in his own right. After some play - Taylor brothers style, everyone enjoyed a fantastic dinner cooked up by Yiayia and Papa and finally off to snoozeville.

(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...

Joseph the Brave Marches On...

2007-10-29T22:00:00.000-07:00

To the surprise of no one but to the great relief of all, our hero was, well... heroic again today. Despite being a little reticent once he realized the room he was headed to was the same as he's perevious treatment, Joseph, with the help of some 'spin lights' the nurses gave him to hold on his way, soldiered on and as Mom puts it 'he rocked.' Team Taylor also welcomed yet another member to the fold, friend and current team member Jenny Serres' sister who is a nurse at Children's was there to provide great reassurance and guidance. Mom and Dad think Jenny may have had something to do with Jean's arrival on the scene. :)

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...

2007-10-29T12:31:00.000-07:00

When last we left our hero, he had just successfully traversed his first course of treatment and although a bit tired, came through like a champ. Today Joseph (by Joe's request - we will be calling him by his full name - and of course we should - heroes need to have a formal moniker as well) will be having an intrathecal spinal of Cytarabine as well as a PEG Pegaspargase two intra-muscular thigh. Because the doctors are concerned his superhuman strength will be too much for the machines they use, Joseph will be mildly sedated. He would have preferred to have continued to play Xbox while it was being done but the player 2 controller ran out of batteries so he couldn't beat up on Dad anymore anyway so he figured he might as well catch a little shut eye while the doctors and nurses did what they needed to do. Everyone send some extra positive prayers and vibes - even for a hero of young JoJo's stature these treatments can be taxing and difficult.

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.

Now on JoJo's hit list: Chemo

2007-10-28T16:28:00.000-07:00

Friday our hero began his first steps to beating Leukemia by starting his first round of chemotherapy. Not surprising to any of his biggest fans, Joe is did well and continues to do well. He woke up happy and smiley on Saturday and rolled up his sleeves for some real important work - bedside XBox play with with Dad (big thanks to Rick for making that happen,) major LEGO building construction, coloring in the coloring book Courtney gave him, admiring the pictures that Adrienne drew, playing with his new dog (no not a real one) that PT got him - (because afterall, every hero needs a sidekick) and just generally sifting through the mounds of toys that seem to be littering every inch of available space in his room.

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. :))

Leukemia just made a big mistake.

2007-10-26T20:34:00.000-07:00

Here begins the heroic tale of young Joe Taylor, a bespectacled five year old boy who faced down ALL Leukemia. It is here on these pages, that I will attempt to tell the events that unfold around he and his Mom, Dad, big brother Paul and his grandparents, aunts, uncles, cousins and friends (all proud and heroic in their own right)….

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…

2007-10-26T11:06:00.000-07:00