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