Day 500 - Preparing for Halloween

     I have no excuses.  It's been far too long since our last update so get ready for picture overload on today's entry.  Let's get the health updates out of the way.  I'm pleased to report that other than a few sniffles Evan is holding steady.  I can't make the same statement for Cristy and Nolan.  Cristy has been battling a pretty tough cold for about 10 days now.  During this bout she's lost her voice a couple of times and is still coughing frequently.  Hoping that we can get this episode behind us and get her back to 100%.  Nolan has also been battling a stomach bug, but based on his latest trips to the bathroom I'm hopeful he has seen the last of it.

My hats fit him because of the head of hair.

     This coming Wednesday Evan has an appointment at the clinic for his monthly check-up.  It will be his typical treatment of IVIG and Pentamidine.  Two weeks ago we concluded our aquatic physical therapy and Evan is back to his normal visits at the CHoA satellite site by our house.  His regular therapist commented on how good he looked and said she would need to revise his PT goals to make sure he's continuing to push himself.

Checking out the masks at the store.

Tacky tourist day at school - part of red ribbon week.

     Recently we met with Evan's 1st grade teacher for an update on how he's progressing academically and socially.  We were pleased to hear that he's listening well and not too disruptive (which was my first priority), and that he's keeping pace with the class scholastically.  She was able to provide us with some areas in math and reading to keep Evan challenged.  

Cape Day - morning photo

     Below you'll find pictures from various events: the Pruitt Halloween Party, Hayes Spirit Night (at Sparkles), Fall Festival (at Hayes), Atlanta United soccer match and a family day at Dave and Busters to name a few.

The first Atlanta United game for the boys.

Hayes Spirit Night

Family time at Dave and Busters

Enjoying the view pre-game

Face painting at Fall Festival

Group photo with some of our neighbors

The kids look bored, but the crowd got them excited.

     Cristy and I had been procrastinating, but finally ordered the outdoor play set for the boys.  The company we hired to perform the work was Swing Time Outdoors.  I couldn't be more pleased by their quality of work, but what really made them stand out was their dedication to getting it perfect for us.  The slide was a bit steep, but completely functional.  It would have been easy for them to pack up and call it a day, but instead they came back the next day with a new slide, built a custom deck for the slide to improve the pitch and did it all promptly and free of charge.  I'd highly recommend them for any outdoor play areas you might be considering.

     Halloween is right around the corner and the boys are already getting sugared up.  Despite the cooler temps this evening we attended a block party with some of our neighbors and got a chance to meet some new folks.  The kids are getting excited and have already been diving into candy for the past few days.  I'm not thrilled about all the sugar, but at least Halloween only comes once a year.  Evan is going as Harry Potter, Nolan is Hedwig (the owl), Cristy is Hermione and I'm Professor Snape.  Looking forward to another fun night with the family as we continue to create lasting memories.

Harry and Hedwig

Day 486 - Genetic results

     Here we are two weeks into October and it still feels like early September.  The Weather Channel is calling for cooler weather starting next week and I'm definitely looking forward to it.  Walking around this weekend reminded me just how uncomfortable it can be in moderate heat.

Heading to Chalktoberfest

     On Monday Cristy received a call from the CHoA immunologist with Evan's genetic testing results.  He informed us that Evan's genes did potentially show a marker that would indicate a less potent immune system; however, he cautioned us that he wasn't willing to make a final diagnosis until Evan is six months removed from chemotherapy and additional tests are performed.  In the meantime, Evan will continue on with his monthly regimen of IVIG.

Speeding down the shark slide

     This past weekend Cristy and I took the boys to a couple of local festivals.  The first one was Taste of Acworth on Saturday afternoon.  It was good to try some of the local cuisine that we've been missing since moving up this way.  Hopefully Evan's health will continue to improve allowing Cristy and I to get out more to try these spots on our date nights.

     The other event this weekend took us to Chalktoberfest in downtown Marietta.  We did some art work, ate lunch at a great spot in the square that we hadn't tried and checked out some very talented artists' drawings.  It's amazing seeing what some people can do with just their imaginations and chalk.  I'm lucky if I can make a decent looking stick figure character.

     Later this week I'm taking a couple of days off of work to spend some more time with the boys.  Cobb County Schools are doing an early release every day this week.  Cristy and I are meeting with Evan's teacher on Tuesday to see how he's doing and discuss any areas of improvement.  

Nolan requested a purple lion

Roaring session afterwards

     Evan is really tight-lipped about school and I've always tried to give him space if he doesn't feel like talking about it, but this week a funny story came of it.  About a week ago we noticed Evan came home with a Chik-Fil-A giftcard in his school folder.   When asked about it, he claimed he didn't know why he got it.  Cristy chatted with his teacher Friday morning, and we found out Evan was named Hayes Mustang of the Month for September.  We were extremely happy to hear this, but would have loved to have heard it from him.  There is no question he gets his modesty from his mom.

Doing some arts and crafts before heading back home

     Children's Healthcare of Atlanta encourages everyone to don capes on Friday to help recognize all the little fighters out there.  This is not a cancer specific event, but rather a way to highlight our heroes of all shapes and sizes regardless of their ailment.  If you'd like to find out more please check out this link:  Cape Day - ATL.  Evan is showing us his superhero pose and I'll make sure to get pictures of him on Friday.  Also, see below for Evan and Nolan's picture from last year.

Day 479 - Camp Sunshine weekend

     It's been a fun and exciting weekend as Camp Twin Lakes in Rutledge, Ga. became Camp Sunshine.  All four of us are exhausted, but we now have lots of cherished memories to take forward with us.  Camp Sunshine is a non-profit charity that specializes in providing resources and entertainment for families that have children battling cancer.  I've mentioned them on the blog before, but if you want to find out more please check out this link:  Camp Sunshine - About Us.

One of two lakes at Camp Twin Lakes.

Grabbing a snack before heading to the cabin for the evening.

     Let's backup to Evan's appointment on Friday.  During this latest round of chemo Evan received Vincristine, IVIG, Pentamidine, Dexamethasone (steroids) and a spinal tap of Methotrexate.  His counts were slightly higher than normal for this phase of chemo.  To help suppress his bone marrow functionality a bit more the medical team has decided to increase his daily Mercaptopurine.  No one appeared to be alarmed.  It seems this is fairly common due to children gaining weight and growing, so dosages need to be adjusted accordingly.

Ideally his ANC should be closer to 1.0.

     Shortly after his appointment the family and I powered through rush hour traffic to head over to Camp Sunshine.  The weekend seemed to go by in a whirlwind, but we tried to soak in as much as we could.  Although the pictures don't capture everything, we did fishing, archery, kickball, arts and crafts, cooking, paddle boating, dodgeball, basketball and putt-putt.  The campers were made up entirely of other children and families facing, or having faced, the same challenges as we have.  Activities are designed for fun and interaction, so even if you're shy it forces you to come out of your shell to meet others.

Speed golf Evan style.

He preferred shooting his bow a bit un-traditional.

He was spinning quickly, thus the blur.

Fishing on the dock.

Evan caught a brim.

     Evan's favorite event was probably the parents vs kids kickball game.  I'm happy to report the kids won 21 - 5.  The highlight for Evan was getting a hit and scoring a run for his team (we arrived after the game had already started).  His team made sure he felt the love for helping and he was so proud to contribute.  It will be one of my all-time favorite memories of him smiling from ear to ear and hearing him talk about it afterwards.  Nolan was loving all over everyone so it's tough for him to pick a favorite memory.  I'll help select for him; it was probably playing frisbee with one of the other counselors in the gym, while Evan chased us around with a dodgeball.

Nolan dancing with one of the counselors.

Nolan caught a catfish.

The bandanna is for kids who were able to catch a fish.

Cooking class.

     Camp Sunshine had photographers walking around all weekend to capture these special moments.  When the photos are available I'll make sure to post them in a separate blog. We're so thankful to all the counselors, volunteers and staff who helped make this weekend so spectacular.  Our poor feet are still aching from walking, but this is a small price to pay for helping us forget our problems for a weekend and allowing us to grow closer and stronger as a family.  

Heading back for the evening show and s'mores.

Petting the catfish that Nolan caught.

Taking brother to the next activity.

Improv session.  The boys are supposed to be slow-mo basketball players.

The dining hall at Camp Twin Lakes.

Day 472 - It finally feels like autumn

     With the start of October it's starting to feel like fall outside.  I've been looking forward to the cooler weather and this morning I wasn't disappointed.  Evan was out on fall break this past week so Cristy tried to fit in plenty of activities to keep the kids busy and active.  We took advantage of the unseasonably warm weather to play in the water for likely the last time this year.

Couldn't get the kids to look up for a pic with grandma.

     As is customary, I'll start with Evan's health updates.  While leaving the movie theater Tuesday afternoon Evan slipped and fell while "tight-rope" walking a speed bump.  He refused to bear weight when it first happened, so naturally Cristy was fearing the worst.  She called me for a second opinion and I headed home to take a look.  By the time I arrived he seemed to be feeling better and we asked him to walk some.  He was bearing weight so we felt comfortable that nothing was broken.

Having some fun at the zoo.

     On Wednesday he was still hesitant to walk, but we didn't notice any swelling or bruising at that time.  In addition to a gimpy leg, Evan also has been battling a nagging cough.  Luckily there have been no fevers, and as of this morning it appears to be nearing an end.

     While meeting with his pediatrician on Thursday she checked his lungs and gave him a good once over.  Overall she said he looked good.  His blood counts showed a 5.5 WBC and 2+ ANC.  These looked good from an immune system perspective, but I wonder if the oncology team will bump up his chemotherapy dosages at all.  Ideally they like him sitting around 1.0 ANC.  He could be elevated due to the cough/cold he's been fighting though.

Selfie time at Dave and Busters.

     While doing his weekly physical therapy the therapist noticed a pocket of fluid and swelling around his ankle due to the fall earlier in the week and recommended we meet with ortho just in case.  The doctor x-rayed Evan on Friday and said everything looked good.  In fact, his bone had healed even more since the last time it was imaged.  This was unexpected, but great to hear.  He still seems reluctant to walk too much on it.  I'm assuming it's sorer than he's letting on, but historically he doesn't like to share with us when he's hurting.  

Spending time at Menchies.

     On Sunday we went out with my parents, sister and niece to celebrate my mom's birthday.  Thank you for always helping us at a moment's notice mom!  The boys love their grandma and grandpa very much and generally come back home to us a few pounds heavier when they get to visit.  

     Throughout the week we've taken the boys to Dave and Busters, a birthday lunch with their grandma, the zoo, movies, Center for Puppetry Arts and even did some shopping yesterday to buy clothes for charity.  One of our favorite spots, Menchie's, was collecting clothes and books for an Elementary school affected by Hurricane Harvey outside of Houston.  Cristy took the boys to buy jackets and books for this great cause.  I'm so hopeful that as the boys get older they take civic responsibilities seriously and do their part to help the community.  We're very fortunate to be in a position this year to allow Evan to take advantage of so many fun and fulfilling opportunities.  

    This Friday Evan has his serious bout of chemotherapy, complete with a spinal tap, steroids, Vincristine and our typical immune system stimulants.  Following that appointment we'll be hitting the road to spend the weekend at Camp Sunshine.  Looking forward to spending some time with the family away from TVs and our phones.  Thank you again to everyone that helped us raise money for CURE!  Evan is writing personal thank you notes for those who donated and they should be in the mail soon.  

Final time on the splash pads this year.

Newly created puppets at CfPA.