1st Grade!

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

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

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

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!

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

"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!

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

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

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

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 

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!!!

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

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..."

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?!

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

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."

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

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

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

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

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

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

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

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

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

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

Everyone needs challenges!

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

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

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

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

A Little Numbers Update...

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

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

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

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