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