Day 406 - Where did the summer go?

      The Summer of Evan is drawing to an end.  The last 60 or so days seem like a blur, but we're thankful that we've managed to avoid any hospital stays.  Evan is in great spirits as we get ready for school to begin next Monday.  On top of that we received some encouraging news that could impact Evan's treatment in the future.

Enjoying the view on Stone Mountain

     On Tuesday of this week Evan met with his newly assigned ID doctor to discuss the results from his MRI.  We were thrilled to hear that nothing new has cropped up and that the potential infection in his hip is no longer visible on the scan.  His spleen and liver still show spots, but they haven't grown and the doctor wasn't concerned.  The only other area that showed up was some spotty patterns on his femurs, likely the result of his increased activity.

Dinosaur exhibit at Stone Mountain

     Some of the best news we received was his desire to pull the Keflex (antibiotic) and Voriconazole (anti-fungal) from Evan's treatment plan.  He said he's never seen a patient stay on these drugs this long, even patients affected by bone cancer.  The doctor also expressed concern over keeping Evan on Voriconazole any longer than necessary due to the toxicity it has on his body.  In order to have these pulled from the treatment plan he needs buy-in from Evan's surgeon and primary oncologist.  I can't imagine the surgeon will resist, but I have my doubts about oncology agreeing to this plan.  Evan has been a tricky patient and from conversations with them over the last year I know they feel more comfortable having this "safety net" in place.  Hopefully we'll get a decision in the next 30 days.

Center for Puppetry Arts

     Since our last blog update we've tried to keep Evan and Nolan busy.  School begins Monday and we had a chance to meet his 1st grade teacher today.  When Cristy was explaining Evan's medication and mobility challenges I feared we might have been overwhelming her.  She seemed to take it all in stride and I feel confident we're in for another good year.  We also had a chance to visit Evan's teachers from last year.  They greeted Evan with a smile and were happy to see him getting around so well.

An afternoon at Catch Air

     Tomorrow marks Grandpa's 70th birthday.  My dad is still getting around pretty well and we're so lucky to have him in our lives.  We're going to celebrate this weekend and the boys are beyond themselves.  Looking forward to making the most out of our last weekend before school starts back up.  Onward to 1st grade!

The boys hogging our bed one morning

Dinosaur exhibit at SM

Getting ready for the laser show

Tough to see, but dancing during the laser show

Checking out the digs in his new classroom

Day 397 - Let's see how the steroids treat us this time

     Steroid treatments have not treated us well in the past.  Typically it has weakened Evan's immune system, allowing for some of his previous infections.  We started the pills back up on Friday following his appointment for IV based drugs and spinal tap.  I spoke with the nurse practitioner via phone while Cristy was there and she said from day 2 of steroids until about two weeks after we should be more cautious.  Evan's blood counts looked great.  He had a much lower ANC, however it's the level the medical team has been striving to achieve.  This means that the dosages are probably sized correctly and having the desired effect.

Heading out to catch lightning bugs.

     The medical team has back and forth discussions about Evan quite often.  Knowing his medical history with steroids and how it's a fundamental part of his on-going treatment they are frequently torn between minimizing infections or risking relapse.  Interestingly the NP mentioned that the committee that oversees treatment durations is closely evaluating whether a 3 year treatment plan for boys is still necessary.  Girls with B-ALL only have a 2 year plan, while boys are 3 years due to their higher odds of relapse.  Because of Evan's history of infections I have a feeling the medical team will be following the findings and data extremely closely, granted we only recently passed the 1 year mark so we still have a ways to go either way.  

Nolan looks a little unsure in this photo.

     This morning Evan had a MRI appointment.  The purpose of this is to discover any lingering infections that we might not be aware of.  Results will be sent to the doctor this afternoon and I'd anticipate getting a call back with the findings in the next 48 hours.  Cristy and I aren't even sure which team is taking the lead on this (Infectious Disease, Ortho, Oncology), but my guess is ID.  I certainly hope nothing is found.  His body has been through its fair share of surgeries.

Wakey wakey

     Next week Evan has an appointment with the ID team.  His newly assigned doctor will give him a close look and recommend any changes to his medication plan, conferring with Oncology.  We still have an issue with his red skin and how it interacts with his chemo drugs.  I'm open to making changes, assuming the fungal lesions and pockets of mold are under control.

Passing the time at the clinic.

    

Day 387 - The Summer of Evan continues (gratuitous photo blog)

     As I mentioned in an older post we were going to try and make up for as much lost time as possible.  We've certainly held true to that commitment.  From a health perspective not much has changed.  I'm absolutely thrilled that we get to hold Evan's Methotrexate on Monday ahead of his spinal tap and other procedures on Friday.  What does this mean?  It means it will give his skin a fighting chance to heal up a bit.  The Methotrexate slows and severely stunts his body's ability to repair itself.

Debra and Evan making slime.

     With the Methotrexate being held I'm hoping that Cristy (or possibly me) can get him to White Water this week for one last day in the sun.  School starts back up at the end of this month and I have a feeling we won't be able to find much more time for water parks or the beach after that.  Cristy took Evan to buy his school supplies and he's starting to get excited about school.  Evan told me just today that he wants to "go there right now".  

Evan reading to his brother for nap time.

     Last weekend we celebrated the 4th of July (on the 2nd) and got a chance to have some of Evan's friends over for a couple of nights.  With improved blood counts comes our willingness to let him mingle more often with his friends.  On Saturday my friend Mike and his daughter Debra came up to visit.  Cristy was nice enough to give the kids plenty of things to do.  Evan was ecstatic since he loves playing with people at the house.

An "appetizer" before the main course.

     The following night our friends Katie and Jason came by with their daughter Camdyn to grill out and shoot fireworks.  We had a great evening over-eating and rushing through fireworks to beat a storm front that ultimately didn't come through.  Most importantly I think all the kids enjoyed themselves and that always puts a smile on all our faces.

Run!  It's a giant girl at the Children's Museum.

     Cristy got a chance to take the kids various places this week.  The Children's Museum was one of the days and she took the kids to visit Camdyn, Katie and Jason at their house on another day.  We wrapped up the week with a trip to Paw Patrol Live at the Fox Theater this morning.  It was Nolan's first trip and as expected he was mesmerized.  Cristy asked me prior to the show starting if I was excited and I told her I was excited that the kids were excited.  I always wonder what is going through an actor's head when they perform for kids.  In this case it was adults dressed up in dog costumes singing and dancing, but I digress.

Camdyn and Evan enjoying the warm weather.

     The rest of this blog is filled with pictures from the last seven days or so.  I'll provide another blog Friday evening after Evan's appointment.  I hope to have blood counts, next steps, what to watch out for and a progress report.  I know the doctors aren't able to tell us much, but any type of encouragement we can get always lifts our spirits.

Playing Eggedon (with water fortunately).

Group shot before we got started with fireworks.

Momma hen and her boys.

Nolan was very excited and couldn't concentrate.

The show is about to begin.

Children's Museum

The kids watching Jason and I plot our next move.