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.
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| 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.
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| 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.
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| 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.
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