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