The Adventures of Evan: December 2018

Monday, December 31, 2018

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

Sunday, December 9, 2018

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.