Asher was discharged from the hospital on March 13. We all breathed a sigh of relief, as we felt like we could resume “the plan,” the path that we had been told to expect and follow. Despite knowing what we were likely facing from a long-term perspective, we wanted to see this incident as simply a bump in the road that knocked us down. We were as eager as every to dust ourselves off, and get back on the path.

When we brought Asher into the clinic on March 11, he was feeling awful. The combination of pain, vomiting, along with the rapid loss of motor control is a solid recipe for having an unpleasant demeanor, yet, though he was certainly a pitiful sight to behold, he wasn’t mean or harsh with anyone.

It wasn’t long before the oncologist showed up, but it wasn’t Asher’s usual doctor. In fact, his doctor was a woman we hadn’t met before. She had a distinct Eastern European accent, and Asher latched onto it immediately. She asked him if he could guess where she was from, and his first guess was “Ukraine.” With a slightly surprised look, she responded, “Yes.” His follow-up question was probably a little unexpected coming from an eight-year-old, “Ever been to Chernobyl?” Of course she responded that no one could live there right now. They continued this back and forth about Ukraine, the city...

Part of the big plan involved bringing Asher’s steroid dose down to zero, if possible. If you don’t know anything about steroids, one thing you should know is that a patient who is taking steroids can’t just quit cold-turkey. The dose must be stepped down gradually. One of the requirements for the clinical trial Asher was signed up for was that he be below a certain dosage, about two milligrams, or preferably at zero before the start date of the trial.
And by the second week of March, we were close.

In the eloquent words of Mike Tyson: “Everyone has a plan until they get punched in the mouth.” The weekend of March 9, things started to go sideways.

March 11, 2019 Update:

Hi everyone. Thanks so much for praying for us and caring for our family.

It’s been a bit of a roller coaster for us this weekend. We spent some quality time with old friends who live in various parts of the...

From where we stood, the big things were going according to plan: Asher has radiation treatment. We go home and make the biggest memories possible. We come back and start a clinical trial. That’s what we were told to expect, so that was the plan, and we had no reason to think otherwise.

From February 28, 2019:

We are very thankful that the radiation has not made Asher sick thus far. We are also thankful that none of his other symptoms have worsened. We’ve had a few bugs go through our family in the last week, so you can pray that no one else gets sick. Please pray for Leah and I as we make preparations over the next few weeks as to how we are going to make the most of the time.
Above all, please pray that God would be glorified.
Thank you so much for standing with us.

From March 7, 2019:

Thank you for the cards, letters, and gifts you all have been sending. The words of...

No matter where you are and what you’re going through, regular life problems can still find you: car problems, stomach bugs, and the like. Leah’s post from February 22 was a snapshot of the normal and the abnormal of life coexisting:

I don’t know what words to use to communicate the depth of our gratitude to all of you for your prayers, love, support, Goldfish and Slim Jim’s, and lavish generosity, but thank you. Truly, we are so grateful.

David is better at wrapping things up and giving you all the big picture of the how’s and what’s in our lives right now, and if you’ve ever gotten a gift from me, you know wrapping is not my thing—I’m the moment-to-moment one.

So here are some of the little things—some ‘moments’ from this week:

• President’s Day! The MS cousins came up with Nana and we went to the Memphis Zoo. The kids were mesmerized at having arrived at the Panda enclosure at...

Leah and I worked hard to build structure and meaning into our days in Memphis. For a couple of weeks, it felt like we were sleeping in a hotel every night. But it was clear we weren’t on vacation, and given all that had to be done, we needed to forge some kind of plan for our day-to-day existence there. My mother-in-law became an integral part of that plan, as she would travel to Memphis at least once per week to spend the morning with Annelise while Leah took Asher to his daily appointments, and I made some feeble attempt at working remotely.

The one-room nature of our accommodations meant that bedtime came quickly for all. Occasionally, I would slip out to go sit on a seat in a common area, but that was rare. But before bedtime, we tried to be consistent in working with the kids on thinking and memorizing a particular scripture for the week, and, before we would end the day with...

We moved into Ronald McDonald House in less than a week after our arrival, and before the week was over, we had to politely ask people to stop sending care packages. It didn’t really stop. The amount of boxes of gifts, snacks, in addition to the cards and notes of encouragement was difficult to quantify.

February 11, 2019 Update:

We continue to be overwhelmed (in a good way) by the kindness, generosity of people towards us. So once again, we want to say “Thank you!” Please know that the greatest gift that you can give us is prayer. God has been and continues to be a refuge in our day of trouble.

This goes without saying, but please continue to pray that Asher would be healed.

Pray for the hearts of our children. Pray that they would see their parents clinging to Jesus as our only hope in life and death.

For Leah and I, there are a lot of things on our minds right now.
...

Though my wife doesn’t write publicly as much as do, she certainly writes more than I do.

Leah’s Journal, February 6, 2019:

Six weeks since he said “Mom, I see 2 of you!”
Three weeks since the tumor was found and the diagnosis that changed our lives
Zero weeks spent hopeless and alone
Grateful is the theme of our thoughts. Everyday there are more cards, notes, texts, messages, posts, and packages full of prayers and encouragement. My heart is gladdened and refreshed by the love God pours out on our family from His people. God, you remain our only hope in life and in death. Bring life abundant and joy unspeakable to those who pray for us. As Asher starts radiation today, I’m asking God that you would help him trust you fearlessly, and that God himself would supply him with strength and courage.

Leah’s Journal, February 7, 2019

Day 2 of radiation.
“Oh God our help in ages past, our...

One of the experiences of being treated for cancer is the need to get medicine in the patient, and blood out of the patient… a lot. Because needles and children don’t really go well together, an alternative option is a port catheter, or “port” for short, that is surgically placed just beneath the skin next to the collar bone with a line running directly into the circulatory system.

It was suggested to us that Asher have one of these installed in a minor outpatient procedure, and we agreed. Prior to surgery, in one of the countless ways the Child Life specialists interacted with kids to make them as comfortable as possible, they brought Asher a… doll? This “doll” was a soft, flat-ish looking fellow that had his own port. The Child Life specialist used it to demonstrate how the port works. Asher, who already had soft spot for medical things (mostly army medics), was fascinated. The...

Your eyes saw my unformed substance;
in Your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
Psalm 139:16

My family has always been close with my sister-in-law’s family, and Asher has always been close with their son. They are a family of three, who had been living in a small house which they had outgrown years ago. In late summer 2018 they found a great house that would give them the room they so desperately needed, with a little extra to spare for guests. They put in an offer, and it was accepted. However, they struggled to sell their own home for months. Amazingly, the owners of the house they wanted to purchase continued to honor the contract during those many months, despite getting other offers for the house. Christmas 2018 year was a bit of an extra celebration, because they were finally able to find a buyer, and moving...