Day 676 - Back on schedule

     As  you may recall from the previous blog Evan was unable to get his spinal tap during his last visit because the anesthesiologist wasn't comfortable putting him to sleep due to congestion in his lungs.  During his latest visit on Wednesday the doctors were able to circle back for his spinal tap and he was able to receive all of his other regularly scheduled medicines.  The doctors were happy with his counts, although he's been battling a cold still so his ANC is probably a bit elevated.

Another LP in the books

     Over the last couple of months Cristy and I have noticed that Evan's taste buds are changing.  This being my oldest child I'm not sure if it's simply a phase of getting older or if the chemo is affecting his tastes.  Things that he normally loves now taste odd to him, while things he would never eat before are pleasant (like cinnamon).  Naturally this has Cristy and I scrambling and pulling our hair out as we never know what to prepare for his meals.  

     In addition to the eating challenges he's starting to vomit again with more frequency.  The NP that we saw on Wednesday suggested administering his medicine during dinner time instead of waiting until bed time like we've been doing.  Nausea has been the norm in the mornings for as long back as I can remember, but now he's vomiting right after meals.  He eats pretty ravenously (it's a sight to behold really) and I'm thinking that could play a part too.  

     The next two weekends are an exciting time for us.  This coming weekend we're participating in Cure's 5K called Lauren's Run.  It's a great event for a great charity.  We decided not to participate in the fundraising portion of this event as we already asked for donations for Make-A-Wish.  That said, they are another excellent charity that helps children battling cancer and their families.

     Next weekend some of our family and friends will be participating in the Walk for Wishes 5K at Stone Mountain.  We've hit our fundraising goal and I want to say thank you to everyone that donated!  This year Evan will have a display dedicated to him at one of the tents and Cristy won a customizable mile marker that can be seen along the race route.  Evan was not very mobile during these 5Ks last year so I'm optimistic and curious to see his level of participation.  I'm not going to force him to run/walk, but if the mood should strike him we'd certainly encourage it.

     We're quickly coming to the end of another school year.  Evan has enjoyed his time in 1st grade and the faculty at Hayes has been great, especially considering our need to miss days for appointments and sickness.  I've been pleased that his immune system has held up so well.  Other than a few feverish nights earlier this year I think we've been extremely fortunate.  I'm already starting to think of some fun things we can try to do this summer.  These next few weeks will probably be a blur and I'm thankful for the strides Evan has made over the last 12 months.

Happy 50th Anniversary to Grandma and Grandpa

     

Day 661 - Back home after a trip to Camp Sunshine

     The family and I returned this afternoon after another great weekend at Camp Sunshine in Rutledge, Ga.  It was great reuniting with families that we met during our last visit and meeting new families.  In addition to the obvious fun activities, one of my favorite aspects of family camp is the ability to connect with other families who are or have experienced the same struggles.  The counselors do a great job of nurturing interaction and they make it difficult to remain shy for long.

     With this past week off Cristy and I tried to make the most of our time with the kids.  While we didn't do everything we set out to do, it was still eventful and entertaining for all of us.  I was able to take Evan to his physical therapy session on Thursday.  It's amazing to see how far he's come in the last 12 months.  His therapist spoke highly of his work ethic and said that we can probably drop our appointments from every two weeks to monthly.

Getting in some rink time

Out running errands with the kids

     When Evan and I were in the waiting room I asked him how it felt to be able to move around so freely now.  His response?  "Dad, I've always been able to walk.".  I responded with, "Son, you don't remember being in a wheel chair or using your walker?".  Evan: "Nope.".  There you have it.  Either a child's memory span during these years is minuscule or he chooses to forget many of the negative experiences thus far.  I guess we're very fortunate that he has forgotten his hospital stays, long nights sick and lack of mobility.  

     Later this week my parents will be celebrating their 50th wedding anniversary.  We're all lucky to have them as role models for how a married couple should carry themselves.  More updates and pictures to follow next weekend.  

     The staff at Camp Sunshine did a great job of capturing many of the special moments this past week and we'll have these photos made available to us in a couple of weeks.  

Our Camp Sunshine Photos

Night 1 at Camp Sunshine

Nolan and Evan both caught fish

Homemade pretzels

Nolan's 2nd fish

Enjoying the morning of Day 1

Day 654 - The reason for the season

     Today we celebrate the rebirth, or resurrection, of Jesus Christ.  There are countless lessons to be learned from his sacrifice, but the theme we're going to focus on today is rebirth.  Evan continues to get stronger, physically and mentally.  Cristy and I push him daily whether it's PT work or assignments at school.  Yesterday we noticed he was limping a little bit after a morning of rock climbing, but he later acknowledged to us that his leg was simply tired.

Growing scholastically every day

Jumping was not possible this time last year

     Evan's last chemo visit didn't yield any blood count surprises; however, his lungs were very congested and the anesthesiologist wasn't comfortable putting him to sleep for his spinal tap.  The doctors assured us that there was nothing to worry about and that we would pick up this treatment during his next visit.  They went ahead and proceeded with the rest of his scheduled drugs (steroids, Vincristine, IVIG and Pentamidine).  

     Shortly after the last blog Cristy and I took the boys to an activity known as The Compassion Experience.  In short it's the personal story of a handful of young children and details some of the struggles they face in third world countries.  I'll admit they're probably a little young to grasp the magnitude, but I'd rather start early so that they can begin to develop sympathy for their fellow man.  They both claimed to have enjoyed it and I hope to take advantage of more opportunities, charitable or otherwise, like this in the future.   

     Last weekend some of our old friends who used to live in Georgia came down from Indiana to visit.  It was fun getting out for the evening with them to grab a bite eat, bowl and play some games at our local bowling alley.  That next day we were invited by Camp Sunshine to celebrate Easter a little early at their Decatur location.  I'm excited for this weekend because the family will be heading to Camp Sunshine (at Camp Twin Lakes) for a few days of fun.  

Getting ready for some laser tag

Nolan was selected as the assistant for the magician

One of the kids at Camp Sunshine photobombed us!

     With Evan off for Spring Break this week I decided to take the week off from work so we could maximize our time together.  Leading into my time away from the office we celebrated Easter down at my parents' house today.  My sister toughed out the heat and dressed as the Easter Bunny.  With my dad welcoming us as we arrived, my sister thoroughly confused Evan.  He couldn't figure out who was in the costume.  As usual Nolan wasn't phased and made quick friends with the Easter Bunny.

First time trying virtual reality at The Rasasombaths

Baby Ben enjoying his first Easter

     Wrapping up I just want to say thank you to everyone who has donated to our team for Make-A-Wish.  There's still time to donate as we're still another month away and I would encourage you to help make a difference to a child and their family.  Also, if you want to join us at Stone Mountain for the walk/run we'd love to have you.  Evan will have a placard on display at the event and they usually recognize their wish kids and celebrate in a big way.