Day 464 - Cancer Awareness Month

     Apologies for the rehash on some of the content on today's blog, but I wanted to make sure that I properly highlighted Cancer Awareness Month and the struggle that many families face.  As some of you know Evan was in a dire spot last year.  Despite all he's been through we're so fortunate that he's still with us and improving daily.  Far too many children lose their battle and more can be done to ensure that no family has to suffer this painful reality.

Spending time with his cousin at my parent's house.

     Over the last month I've read story after story on CURE's Kids Conquer Cancer page.  Some stories are uplifting and others are absolutely heart wrenching.  Reading their journeys reminds me that the cloud of uncertainty will always be with us as we will have to wonder if Evan's cancer will return.  We need a to find a less toxic cure and I hope it happens during Evan's lifetime.  

CURE's Kids Conquer Cancer

Evan's Story - Donation Page

     To those that have donated so far, from the bottom of my heart I want to say THANK YOU!  Speaking from experience I can tell you that CURE does some wonderful things for the children battling and their families.  When we were in the hospital last year they served us countless meals, brought us overnight toiletries, snacks while confined to our room and they provide much needed financial support for cancer research.  If you're looking to donate, CURE is certainly a worthy cause. 

Apple picking with Camp Sunshine at Hillcrest Orchards.

     For the month of September Evan's school has been having fundraisers and other events to help raise awareness.  We're very fortunate to have such a strong support system among our family, friends and community.  As it turns out, one of the teachers at his school also battled leukemia as a child.  Yesterday the school asked if we would be willing to participate in a photo opportunity and we happily agreed.  

#FightLikeAKid

     This past Tuesday Evan went in for a CT scan to check on the fungal lesions in some of his organs.  We weren't sure when to expect the results, but last night Cristy got a call from his primary oncologist around 8:45.  As you can imagine, this later than normal call caused Cristy to pause bracing herself for the worst.  Because of Evan's infection history she immediately was thinking that another emergency surgery was in his future.  However, despite the late call we're pleased to report that he received a clean bill of health.  In fact the infections that had been showing up in his liver and spleen are now gone, replaced with scar tissue.  His lungs looked healthy.  We were beyond thrilled to hear this.  Now our next biggest obstacle will be when he receives his steroid treatment in a couple of weeks.

Drinking some contrast before his scan.

     Also of note, Cristy's aunt Ru was able to visit us this week.  Because it was during the school week we didn't get the chance to do our typical touristy things, but hopefully she enjoyed the chaos that is the Pruitt household.  I know they were excited to see her and sad for her to leave.  

The boys with their Aunt RuRu.

     Today Cristy was invited to attend a fundraiser with CURE called A Tribute to Our Quiet Heroes.  Its purpose is to raise money and recognize the moms who are in the trenches helping their fighters soldier on.  I'm so happy to see her get out of the house for a bit and relax.  Seeing her all dolled up was great and she deserves the attention for all she does for this family.

Heading out to the fundraiser.

     

Day 450 - And then there were two

     Yesterday Evan had his monthly chemotherapy/check-up at the clinic and we received some really good news.  The primary oncologist for Evan gave the approval to pull his Voriconazole medication.  This med had to be timed around eating, which caused scheduling issues for us.  We administered it at 6:00 a.m. and 6:00 p.m., meaning meals took place on the 7s.  Now we are able to eat meals at the times we wish without fear of impacting bedtime, appointments, school, etc.

     With the Voriconazole being pulled that leaves us with daily Mercaptopurine and weekly Methotrexate.  By pulling the Vfend I'm also cautiously optimistic that many of Evan's skin problems will start to clear up.  Our doctor noted that his chemo meds have a common side effect of rashes, but that typically hasn't been the issue for us.
     While Cristy and Evan were at his appointment yesterday Cristy called me on speaker phone and I was able to talk to his doctor.  Overall he seemed very pleased with how Evan looked.  His ANC was a little high (3.0), but we were told not to worry unless this persists for a few months.  If it did they would simply adjust his dosages.  Since children are always growing this is a common issue and one that they deal with as needed.
     Evan has a couple upcoming scans and appointments to verify that his fungal infections are either gone or have remained stable and Ortho is going to take a closer look at his ankle to see how the bone looks structurally.  Each day Evan continues to look better and we're so proud of the man he's growing into.  This is a time where we don't want to get ahead of ourselves and will continue to take things one day at a time.

Monthly infusion time.

     While on the phone with Evan's doctor I was able to ask about the CAR-T cell therapy.  On our current path Evan will not need it, but it comes with its own complications.  One is a dropping of blood pressure and another is fatal infections.  The procedure eliminates all blood cells, good and bad, before the re-programmed white blood cells are infused and have time to multiply.  The doctor estimates it will be about 15 - 20 years before the process is refined enough to make it a more viable option.  It's considered a last ditch effort in its current form, but I look forward to the day when it's the preferred approach.  I'm also hopeful it can some day soon be engineered to tackle tumor based cancers as well.
     I wanted to remind everyone that September is Childhood Cancer Awareness Month.  Despite our personal struggles there are families that have suffered much, much worse than us.  If there is anything you can do to help a family or organization, even kind words, it goes a long way in helping motivate and inspire those effected.

Our month of gold.

   

Day 445 - Enjoying a long weekend

     It's been a fun Labor Day weekend, but as it draws to a close I've found myself in a reflective state.  I mentioned a while back that Evan's story would soon be highlighted by CURE as part of their initiative to bring awareness to childhood cancer (September is Childhood Cancer Awareness month).  Evan's story is posted and available, along with many, many other children.  Their stories and types of cancer vary and it's heartbreaking to read of the struggles, but inspiring to read of their triumphs.  The link can be found below and I strongly encourage anyone viewing this blog to read their stories.  It's been sobering to read and reminds me that while Evan is in a stable spot for the time being, that we're not out of the woods yet.

CURE's Kids Conquer Cancer

     This past week Evan began his aquatic therapy sessions.  He really enjoyed the change of pace and worked very hard (as usual).  Cristy and I want to check out the YMCA around us to see about getting Evan in there with some frequency to continue our work outside of our scheduled appointments.  Time in the pool allows him to get stronger, without jeopardizing his joints and areas of the bone that may still be weak following his surgeries.  

A little Let's Dance - Disney edition.

     For the last few days the kids have had the opportunity to have a little fun.  On Saturday Cristy took the boys to Marietta Square for an art festival and then took the kids to Monster Mini-golf.  Yesterday we took the kids to Stars and Strikes for video games, laser tag and bumper cars and then let the kids stay up a little later than normal for movie night.  We're going to hang around the house today and try to get everyone's sleep schedules back to normal.  

Getting ready for laser tag.

First time riding in a bumper car.

Marietta Art Festival

Vampires at Monster Mini-golf

     For the upcoming week we have a few appointments.  On Tuesday Cristy is taking Evan for a follow-up appointment with his ID doctor.  This is just a check-up and we're hopeful that pulling Voriconazole from his treatment plan is still in effect.  Thursday Evan has another aquatic therapy session and Friday he has his monthly oncology appointment.  It will be a blood count check and IV based immune system stimulants.

     Evan has enrolled in an after-school engineering club at school.  He says he likes it so far, but we'll wait and see if he's going to stick with it once these sessions conclude.  I know he's expressed a desire to play soccer again, but I think we've still got a bit to go physically before that can happen.  Will likely provide another update after Evan's appointment on Friday.