Better Days

Finally, Gage is out of his pj’s, feeling better and back at school. I’m not sure who is more excited about it…him or me!

When I picked him up on Monday (after a rough morning drop-off but great job staying for the full day), he was all smiles. It’s so easy to see that he revels in all the fun of kindergarten…playing football at recess, sitting by a cute girl at lunch, following the antics of his classmates…and, of course, learning.

He also found out this week that the cafeteria manager is willing to make an occasional hot dog for him at his request, even when it’s not officially on the menu. Maybe she’s never had a kid who is regularly on steroids in the cafeteria, but I’ll be curious to see how ‘occasional’ his requests are! And, I can only imagine how he’ll explain the special treatment to his classmates. Once, a parent serving on the cafeteria line said ‘no’ to his request for a hot dog only (minus the full meal tray that he’s supposed to purchase), and he said, “Yes, I can have just the hot dog…because I have leukemia.” I wish I could have seen her face…end of conversation, I’m sure!

So, we’re all relieved that this week is better than last week. Thanks to all of you who made a point to check in and see how Gage was doing last week. Your encouragement during the hard days makes a real difference.

And, a few more pictures from the end of Gage’s day at school today…

Playing with friends while we waited for Avery…

Wesley wants out of the stroller and in on the action!

Avery & Gage catching up on their days at school…

(Sorry there are no funny pictures of Ellie…she was with a friend!)

Thanks again for checking in and for your prayers last week.

RH

Trudging along

Yes, that’s what this week feels like. We had a long clinic day on Monday, even though the kids were out of school and should have enjoyed a fun day together.

(Here’s Gage passing time at clinic by spying on the valet circle with binoculars…amazing the things he thinks of!)

Yesterday (Tuesday), Gage stayed home from school (on a rare day when all the kids should have been at school/mother’s day out). He didn’t feel good and rested most of the day. Today, he felt pretty crummy this morning and rebounded a bit by this afternoon. He could have gone to school for part of the day, but his class at school is hard hit with wintertime “yuck” so I decided to keep him home for the full day. Hopefully tomorrow he will return to school.

And so we work through another bend in the road on this journey.

This week (the more intense week in our 4-week cycle) has hit Gage harder physically that it usually does. He feels crummy, exhausted, hungry, emotional and more. When I watch him, all I see is how sick he feels. I miss the bounce in his step and the mischievous look in his smile. Right now, he’s just working to make it through the day. He has some bright spots, but then he’s quickly tired and in need of a break. And, we’re talking a lot about food..Chick-fil-a, Cinnamon Toast Crunch cereal, chicken strips from Cafe Express, homemade chocolate chip pancakes, hot dogs from the school cafeteria and SO much more…non-stop.

And, I feel the struggle between what I think should be happening and what is happening…both in the big picture with Gage’s health and in the smaller details of how each day plays out. When things are calm, I get a taste of what I envision “normal” life to be. I like the days that don’t feel so invaded by cancer…when I get to plan the day and that’s more or less what happens….and when Gage feels good. Then, I have a week like this, and it’s hard to step back, let go and re-align my perspective. It’s hard to adjust when semi-0rderly days disappear (as least as orderly as it gets with four little kids) and are replaced by days that often feel out of my control. It’s hard to know at the end of the day if I spent my time well when I feel like I had very little say in where I spent it.

So, I remind myself that God has plans for my hours and my days even if it seems like pure chaos to me at times. He longs for me to surrender to Him and trust Him, in ways big and small. Today on The Journey, we read Psalm 35…and these were my reflections…

Lord, as Gage suffers physically this week, it’s a comfort to know you can help me face the injustice of his cancer. Help me not to turn to withdrawal, frustration, escape and distraction to soothe the pain. My fixes are only skin deep. Please remind my soul that You are my salvation. You do see, You do care and You want to walk with me through  the challenges today will present….both for him physically and for me as I surrender my expectations for today and beyond. Help me not believe the lie that you are silent and distant…uncaring & aloof. Help me surrender even when I know your plans are not my plans…that I might walk closely with You and bring praise to Your name…even at what feels like my expense.

Thanks for praying for us this week especially.

RH

More of the same

Not much to report around here…just more of the same. Despite the constant craziness, Gage seems to feel okay and is as silly as ever. His counts came back up. He’s back on his nightly chemo. He got another ear infection. He’s on new antibiotics. He and Avery played basketball on Saturday. As you can tell, that’s usually a highlight of the week….certainly much more interesting than chemo and antibiotics.

Enjoy the pics!

Gage headed to the basket

He shoots…and scores!

Avery’s favorite part…getting to call a play for the first time! Number Two!

Avery taking the ball down the court

Please pray for us as Gage begins a week of increased chemo, including steroids, next Monday. And, you can always pray that our family will continue to be protected from the winter flu, strep throat, stomach bugs etc that are everywhere these days.

Thanks for checking in and for your continued support.

RH

Germs, Fears & Decisions

After Gage’s clinic visit on Monday, the nurse called as usual to tell us his blood counts. Similar to a month ago, his ANC has dropped (to 442). And again,we were instructed to suspend his chemotherapy this week to give his body a chance to recover. We will return next Monday for another “finger poke” to check his counts again before resuming his medicines.

I did ask the nurse about school, his 20 classmates, the yucky winter “sick season” etc.  Thankfully, she just said to continue with good hand washing and/or Purell and to stay away from people who are sick. As you can guess, we do all that anyway as best we can, so we haven’t really made any changes to his schedule this week.

Still, it is an uncomfortable leap of faith to let him enter the world of daily germs when any fever would cause us to be admitted to Children’s right now. Because his body can’t fight infection with his counts so low, they have to admit him to give him IV antibiotics around the clock until they know what caused the fever. The antibiotics basically play the role of his immune system until his body recovers.

For now, I just remind myself that the doctors keep telling us to let him be a kid. I try not to impose restrictions based on my fear rather than their advice. And, it certainly helps to watch him enjoy his time at school and with friends. I can’t imagine his life without the learning, laughs, smiles and fun times he’s able to have each week right now.

And, most importantly, I know that my response to the fears and challenges inherent in Gage’s cancer are an integral part of my role as a parent…and will mark my children long beyond the time of Gage’s treatment. I don’t want to teach my children to fear what they cannot control or that the right decision is the easy decision. They live with me each and every day. If I am easily afraid, they will learn it too.  Of course, there are times I am afraid, and they know it…and we talk about God, His immense love for us, the challenge of truly trusting in Him, how to not worry and much more. Still, I want for all of us the peace that only comes with trusting God…not the worry and fear that comes with trying to control everything. And, I want my kids to learn a confidence in God that is not easily shaken…even when His plans are not our plans.

Deuteronomy 10:12-13
And now, O Israel, what does the LORD your God ask of you but to fear the LORD your God, to walk in all his ways, to love him, to serve the LORD your God with all your heart and with all your soul, and to observe the LORD’s commands and decrees that I am giving you today for your own good?

And, on that note, I took Gage and the girls to a roller skating party this afternoon. Don’t worry…we all used plenty of Purell…before we ate, when we got in the car, when we walked in the house…you get the idea.

Enjoy the pics…

Avery & Gage choosing skates

No surprise here…Ellie wants to skate too!

Gage cruising by…

Avery takes Ellie for a spin…

Ellie loving her new look!

Gage scooting off to join his friends…

Thanks for checking in, and please pray that Gage’s body recovers as it should this week.

RH