[In case you're wondering...instead of the mid-June party/fundraiser for Children's that we've done the last two years on the anniversary of Gage's diagnosis, we're tentatively planning a September 25 event for this fall...after he finishes! So, save the date and stay tuned for more details!]
Gage finished another week of steroids and increased chemotherapy last week, in addition to his on-going nightly chemo. I always plan to make a brief post before we begin those tough weeks to ask for prayer, but then I don’t get to it…and then find myself headlong into the craziness and challenges of the week with no time to post.
As any family of a child with leukemia will tell you, life is tough with a kid on steroids. More than any other drug Gage takes, the steroids effect Gage and our family life the most. They make him insatiably hungry (think food requests every 5 minutes, all day long, all week long), incredibly irritable (think of living in a family with three sisters…already enough for any boy!), sleep deprived (awake & unable to sleep for hours each night), and physically in pain (each time it’s different, but he usually has bone/joint pain).
Even after doing it every four weeks for years, it is always heartbreaking to watch him suffer as he endures yet another week on steroids. And, it complicates our family dynamics throughout each day as well…and I feel for our girls too as they live through the challenges of the week.
Thankfully, before this most recent week of steroids, we took the kids to Florida to enjoy a week at the beach. We picked them up early from the last day of school with the car fulled loaded and started driving. Roughly 12 hours of driving later, we arrived…and jumped right in the pool, clothes and all!
It was a great trip and a special time to share with our kids. Still, cancer takes no vacation…and our trip was no exception. Gage’s medicines make him extra sensitive to the sun, so even after just two days of very limited time at the beach and at the pool (and with lots of sunscreen), the skin on his face had an allergic-type reaction to the sun.
We haven’t had this problem the last two years in Florida, so we called the oncologist on call at Children’s in Dallas. Their advice? Take a day off from being outside, find an ointment/lotion that wouldn’t sting and use it often, re-apply sunscreen every 15 minutes when he’s outside, and buy a wide-brimmed hat for him to wear whenever he’s outside. Although he was not a big fan of all the ‘work’ we had to do to protect his skin, the changes helped and we were able to return to the beach for about an hour each morning…and then swim in the pool in the late afternoon.
As usual, Gage had a great attitude about the restrictions and the girls were compassionate & flexible, as they too were impacted to by less time at the beach and the pool. And, even though we wish cancer would take a vacation with us, we’re thankful that the Lord doesn’t take breaks either, and that we could lean on Him with our sadness, disappointment and weariness.
Psalm 121:2-4
2 My help comes from the LORD,
the Maker of heaven and earth.
3 He will not let your foot slip—
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
All in all, it was still a great trip, and we’re thankful we could enjoy a week at the beach together. Enjoy the pics!
After a LONG time in the car, we arrived, jumped in the pool (clothes and all) & ate ice cream…a great start to our trip!
Wesley enjoying her ‘Dora’ treat…
Gage, Avery & Ellie at the beach…
Avery working on a sand castle…
Gage showing off a crab he caught!
Ellie!
Wesley’s not a big fan of the beach yet…at one point, she finally gave up her fussing and just laid down in the raft and ate a snack!
Thanks so much for checking in and for praying for us. Even though we are getting closer to the finish line for Gage, each day still has challenges and we’re tired from the journey.
Also, instead of the mid-June party/fundraiser for Children’s that we’ve done the last two years on the anniversary of Gage’s diagnosis, we’re tentatively planning a September 25 event for this fall…after he finishes!
So, save the date and stay tuned for more details!
RH
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