Day 977 - Better than expected outcome

     Good news!  Evan received the results from a recent x-ray to discover he has a broken bone in his right foot.  Naturally you may be thinking, "Geez Blaine, how is that good news?".  Well, the answer is this is the cause of Evan's MRI showing increased blood flow, which was initially thought to be another bone infection.

Movie day compliments of Aurora Day Camp

     When Cristy gave me the news I wondered whether this meant a cast, decreased physical activity or any changes to his PT plan.  As of this posting, the answer to all is a no.  Our primary oncologist, in consultation with Evan's ortho Dr., agreed to simply bring Evan back in four weeks for another x-ray.  As usual there is no slowing Evan down.  He hasn't voiced any complaints about pain and regularly loves taking part in strenuous activities.  I guess kids just have a different threshold for pain than 40 year old men finding a new ache or pain daily.  Out of an abundance of caution I'll probably pull back on some of the more physically demanding activities that he likes to take part in.

Bingo and BBQ with Camp Sunshine

     Next week Evan goes for his monthly clinic appointment; however, this one will include his quarterly spinal tap, methotrexate, vincristine and steroids.  Cristy may also hear from the doctors on a date to remove Evan's port once he's done with treatment.  There was some discussion of leaving it in post-chemo since the doctors want to keep him on IVIG for some period of time.  Hopefully we'll have a decision on all of that soon.

Magic time with Mr. Tone

     We've been very fortunate over the last few weeks to be able to participate in some outings with various charities.  One of them was new to us and we got the chance to learn quite a bit more about them.  They're an up and coming charity that provides spiritual support and trips for families fighting cancer called Thumbs Up Mission.  The founders started this charity after seeing the strength of their son who battled brain cancer.  This charity hosted us, along with 105 other families, at Great Wolf Lodge two weekends ago.  I want to say thank you to Thumbs Up Mission and Great Wolf Lodge for the opportunity, and to our host family for helping all of us have such a fun and memorable weekend.  To learn more please check out the links below:

Thumbs Up Mission
Super Bowl at Great Wolf Lodge - LaGrange News

     This past weekend Cristy, the boys and I got to take part in more fellowship with local families via a day at the movies with Aurora Day Camp and Bingo/BBQ with Camp Sunshine.  Interesting note about the movie theater we attended; it was recently renovated (beautifully I might add) and is owned by another pediatric cancer family.  They hosted us for a viewing of Lego Movie 2, complete with refreshments and popcorn for the kids free of charge.  This is the sort of business I'll happily get behind in the future.  Link below for more info:

The Springs Cinema and Taphouse

     The kids have Winter Break from school next week so I'm hoping to get a day or two off of work to spend some time with them.  Day 1000 in our journey is coming soon so please keep an eye out for that blog.  I'm going to try and do something special for that entry.  Adding a song to this blog because it's really motivational to me and has been stuck in my head lately.  It's called Get Up by Shinedown.

More photos from the past few weeks.

Check out that parking job

PJ Super Bowl Party with Thumbs Up Mission

Day 964 - Right leg concerns?

     As usual it's been a while since the last blog post.  Over the last couple of weeks I've been holding off providing an update until Cristy and I were able to capture as much reliable data as possible.  Let's rewind to about two weeks ago.  Evan had an MRI scheduled with his orthopedic doctor to review bone growth and the overall health of his right leg.  Evan has been bouncing off the walls for months so we had no reason to think that anything was wrong.

Hiking Kennesaw Mountain

     Last week we received a call from his ortho doctor that the MRI showed a possible infection in his lower leg (again).  If this had been our first such experience with orthopedics we probably would have taken this diagnosis at face value and started talking about options; however, we've been dealing with enough varying issues with Evan that we feel like he knows his body well and so do we.  His blood counts all seemed to indicate that he was more than capable of fighting any infections.  Along with that he has not expressed any signs of discomfort, which he has always done prior to any medical discoveries in the past.

     When we received the call it happened to be a day that I was working from home and luckily was able to take part on the call.  We asked the doctor if it could be anything else.  He said it could be a case of inflammation, but wanted to consult with Evan's primary oncologist before ordering any test.  Coincidentally Evan had his monthly IV appointment two days later and they were able to order up an inflammation test prior to leaving the clinic.  The doctors and nurses didn't seem too concerned overall and the test showed low inflammation.  Not sure where this leaves us.  Evan continues to carry on without a care in the world, Cristy and I are still uncertain what other tests or treatments we'll need to consider for the future.  With all of his increased activity I'm hoping it's simply a case of inflammation or improved blood flow in that region.  If more information becomes available I'll certainly share it here.

Photo session with Rally.  Can't wait to see the finished product

     Besides this scare that has popped up, things have been relatively quiet around the house.  The kids have been trying to stay active despite all the rain we've received lately.  Both are doing well in school and with warmer weather I'm hoping to get them involved in sports or extracurricular activities.  Nolan will be playing t-ball in a few weeks and he's really excited to make some new friends and get out on the field.  Cub Scouts and potential instrument lessons are Evan's focus for now.  Cristy and I are talking about some athletic alternatives that he can do while on chemo, such as swimming, but can't seem to find a good fit yet.

     Closing out with a song straight from Evan's playlist that seems fitting considering the situation we find ourselves in.  This journey has been long, frustrating, stressful, inspiring, motivating and any other adjective you can think of to describe a life changing challenge.  With the conclusion of chemo scheduled for August it's important that we keep our eye on each day and not look too far ahead.  Additionally we need to continue to tackle each challenge that presents itself with the same vigor we have in the past.  Having said that, the song is called Whatever it Takes by Imagine Dragons.

More photos from the last few weeks.

     

Day 934 - Happy 2019!

     Here we sit preparing to celebrate an amazing 2018 and looking forward to the challenges and triumphs that 2019 is sure to present.  Let me start by thanking everyone who has helped provide my family with memories and goodwill over the last year.  As we wrapped up 2017 I was filled with so much gratitude and hope for the future and the last 12 months have done nothing to dampen this feeling.  Saying I'm thankful for the many blessing that my family and I have enjoyed would be an understatement.

     During Evan's last appointment on Thursday his counts were all a bit high.  The doctors weren't too concerned since Evan has been battling a cold and his body is doing its part to rid him of it.  They decided to hold off increasing any dosages until they get another month of data.  On the plus side they said he looked good overall.  He received his standard dosages of IVIG and Pentamidine.  Of late Evan seems to be really hard on himself.  I don't know if I'd call it depression, but as a precaution Cristy mentioned it to the doctor and met with a child psychologist while Evan was napping.  She gave us some suggestions to try in the short-term.  If he still seems to be battling guilt we'll schedule an appointment to dig in a bit deeper.

Getting ready for Santa

     Having addressed Evan's health I now want to talk about the growth of each child in 2018.  Academically Evan continues to thrive.  He is regularly commended for being a solid student, attentive and good with the other kids.  Personality wise he comes off as moody and with this being my first 7 year old I don't know if this is because of the drugs he's on or if he's developing as expected.  Regardless, he does have a good heart and surprises me often with his maturity and calmness amid chaos sometimes.  Our focus in 2019 will be continued physical growth, particularly in his right leg.

A night at the theatre - compliments of Camp Sunshine

     Nolan is still our happy-go-lucky kid who never seems to get down.  Sick, healthy, tired, awake, hungry, full - he never changes his disposition.  When discouraged he typically just goes with the flow and makes the most out of any situation.  It's been said by others before, but we really are lucky to have someone so easygoing for this journey, especially when plans each day can change so drastically based on medical needs.  Areas of development in 2019 will be in his school work, focus and persistence to work through problems on his own.  

     I'm so fortunate to be on this journey with my partner in crime Cristy.  Dealing with three boys on a daily basis is surely no walk in the park and I know I present a whole different set of challenges for her to deal with.  As with every year since I've been married my goal is always to improve as a husband.  Our situation helps me reflect on other areas of my life and put them into perspective and I hope I've grown as a spouse, father, son, brother, uncle, friend and co-worker.

     Wherever you find yourself this new year please have a great time, take care of yourself, be safe and I'll see you when the calendar turns.  Thank you all again for making this year so special for me and my family, I am forever grateful.

A night out looking at Christmas lights

Day 912 - The season for celebration

     It has been a busy past few weeks for the family.  We've been blessed with the opportunity to celebrate with various charities and organizations.  Building memories and getting a chance to meet other families facing difficult times is very humbling and helps keep things in perspective for us.

The kids being still for a brief moment

     This past Monday Evan had his monthly clinic visit, including his quarterly spinal tap and steroids.  I guess getting sedated is second nature to him at this point.  He never complains about it and for him it's just normal.  When I was a kid it took several doctors holding me down to even get a needle near me.  It's amazing to see what he looks at as standard.

Family photos compliments of Camp Sunshine

     Evan's counts were a bit high, indicating that they may need to increase some dosages.  His ANC was a 1.7.  The doctors noted that if he's high again next month they'll increase his daily chemo dosage.  It's no surprise really when you consider that he's 67 lbs and 4'2".  Also of note on this visit was that Evan's liver enzymes were up for the second checkup in a row.  If his numbers are high again next time the doctors will need to adjust his medications again.

Doing something different - dinner at a Korean steakhouse

     Being busy is just a way of life around our house (as you'll see from the photos in today's blog) and the remainder of the month is no different.  Next weekend my parent's agreed to watch the boys so that Cristy and I could have some long overdue date days to ourselves.  Luckily for them Evan's steroids should be flushed from his system by that point and hopefully he'll be back to normal.  Following that we'll be in the home stretch for Christmas and New Years.  2018 has been a great year for us and I'm so thankful every day for Evan's improved health.

     Yesterday Evan and I were able to take part in the 2018 Children's Healthcare of Atlanta Trip to the North Pole.  It is also co-sponsored by Delta Airlines.  It was an amazing experience and Evan had a great time, despite his reservations about Santa.  The day started with breakfast at one of the CHoA offices, followed by a limo ride to the airport.  All of the limo drivers volunteered to provide this service free of charge.  While commuting to the airport the Atlanta Police Department escorted us which allowed the families to get there in no time.  The Delta team then takes over from everything to check-in with boarding passes, fast tracking us through TSA security, to entertaining the kids at the gate and on the "flight".  Upon landing they had a gate decorated as the North Pole, lots of sweets and plenty of swag to send the kids home with.  Evan was able to check off a few firsts, such as first time in a limo and first time on a plane.  One of the local TV stations was there as well.  If I'm able to get my hands on a link with the details I'll make sure to add it to a future blog.  It was a great experience and I want to thank CHoA, Delta and the APD again for their time and efforts in creating a special day for all of these families.

     At the end of the event Evan did something that made me very proud.  While we were waiting on our ride home in the terminal he asked if he could go over and thank all of the volunteers for making the day so special.  I didn't walk with him and instead stood back to see how he would handle it.  I don't know what he said, but all of them surged in and gave him big hugs and high fives.  It's moments like this that make the craziness and gray hairs all worth it.  I rewarded him with a trip to Del Taco on the way home.

    Below you will find an assortment of photos from the last few weeks.  These include a boys day out at Dave and Buster's, the Cure Christmas Party, St. Jude's Weekend, clinic visit, a trip to the North Pole compliments of CHoA and Delta and the Camp Sunshine Christmas Party.

Kelly and Jeni during the 10K

Camp Sunshine Christmas party

A little Flossing at the North Pole Trip

The blue indicates we're flying super-sonic

First limo ride

Cure Christmas Party at Opera

Nolan and I watching the SEC Championship game

Taking a quick pic before video games at Dave and Buster's

Time to decorate