Today, Asher and Leah will be traveling to Memphis again for another round of checkups, and an MRI. Please pray for smooth travels.

We’re so thankful to God for the hearing aids that he will get this week. We’re hopeful that it will be a significant improvement in his quality of life.

Pray for the hearts of each one in our family. We’ve had some great moments of deep joy and laughter together. We’ve also had some quiet moments of sadness, and not-so-quiet moments of frustration.

The passing on of other children we’ve met throughout this experience is sobering, and sometimes a little haunting for us as parents. Faith is our only anchor. Pray that we would continue to trust God as he leads us on this path.

Pray for Asher’s heart and mind. Lately, he’s settled into his limitations, and I sometimes see the marks of depression in his disposition, most often in a lack of desire...

From the first week following the diagnosis, we purposed to make every day count. Asher had a bucket list of places he wanted to visit, and one of the cities that was high on the list was New York City. It was fitting for a kid that hated to sleep to want to visit the city that never sleeps.

My career had taken me there many times, so I felt comfortable navigating around the city. So on the first weekend of November, we planned and booked a trip, streamlining and packing the agenda because it was just me and Asher, and a long list of things he wanted to see.

With a little over three days of time to work with, we put a lot of miles on that wheelchair of his. We stayed at a hotel in Times Square, visited the USS Intrepid aircraft carrier museum, spent an afternoon at Spyscape, saw red pandas at the Central Park Zoo, and were amazed by dinosaur fossils at the Museum of Natural...

Thanks so much for praying and caring for us. Last week’s surgery went well. We’re thankful that he can close his left eye now, freeing us from the worry of it getting infected, or scratched easily. We’re still not quite sure about the Botox injection. There haven’t been any problems, but there hasn’t been any change, so we’re left wondering what to expect at this point. It’s not something we’re presently worried about.

His other appointments were also successful. He was fitted for a new AFO which we will be receiving soon.

Unfortunately, we did confirm that he’s almost completely deaf in his right ear now. However, they ordered him some hearing aids, so that will definitely help.

Please continue to pray for him in every way; his body, mind, and soul. He’s had some emotional days lately, lamenting not being able to play like he wants to, and simply not being understood well...

Tomorrow Leah and Asher head back to St. Jude for a few specialist visits, and minor surgery on his right eye. This surgery will include a small weight sewn into his right eyelid to help him close it, as his control is very weak on the right side of his face, and Botox injection into one of his eye muscles to help bring it back to center. Please pray for the surgery to go smoothly, particularly because the surgery is in the afternoon and requires sedation—he won’t be able to eat or drink nearly all day.

Other things to pray about:

Please pray for uneventful travels.

Pray that his physical therapists can get him fitted for a new AFO (an ankle and leg brace he has to wear on his left leg) as he has grown out of his current one, and it’s painful to wear, but necessary.

Asher will also see the audiologist for the first time since early this year. His hearing is not great. Pray that...

Please pray for a couple of our friends, Kingston and Mustafa, both of whom have the same tumor as Asher (DIPG). They both were diagnosed around the same time as Asher, and they both received bad news from their MRIs this week. They are only four years old. Our hearts are heavy for the kids and their families, and it’s a difficult reminder for us. This is a thing that should not be.

Come, Lord Jesus.

From Leah:
Friends and family, as always, we’re so grateful for your love, care, and prayers on our behalf.

Nine months ago, the wind was knocked out of our family. A phone call from a doctor and 4 little words after what would be Asher’s first MRI—

“There is a mass…”

A week and a half ago, after Asher’s 6th MRI, a doctor said a few words that gave us a moment to breathe,

“…Reduction in tumor size…”

After Asher had to stop the clinical trial due to severe side effects back in July, we were heartbroken. The amazing team at St. Jude put Asher on Avastin infusions to help manage his symptoms and give us as much quality time as possible.

With joy, we are updating all of you—our faithful friends and family—that after 6 treatments of Avastin, Asher’s tumor has gotten smaller, the necrotic tissue surrounding the tumor is all but gone, and the cyst at his biopsy site is resolving. We are...

Thank you for praying for us. We’re still adjusting to our fall schedule, but things have been going smoothly. We’re really thankful for that, and ask that you would continue to ask in a spirit of gratitude that we can adjust to the “new normal” with ease.

The next two weeks will stretch us. Next week, I will be working from the office four solid days in a row. I’ve not done that since Asher was diagnosed. That will be a big strain on Leah, especially now that Annelise is in school. The following week, Asher and one of us will make a short trip to St Jude. The whole trip should only be three days, but caring for Asher is tougher when you’re flying solo. Pray for strength, and wisdom as we walk through the next two weeks.

Pray that Asher’s appointments at St. Jude would be productive, and that he would have patience and endurance for a very long day that includes an MRI, and...

Overall, things have been going well. Asher continues to maintain the same symptom levels - no better or worse. We’ve been carrying on much the same for over a month now. We’ve had the opportunity to simply be a family with few medical disruptions, and we’re so grateful for stability, and for the memories we’re making. Please pray that our primary attitude would be gratefulness.

In the category of “Things that Feel Normal, ” we’re preparing for Annelise to start kindergarten next week. Pray for wisdom for us, and a smooth transition as we begin to create new routines.

Asher loves to learn, and he competes with Leah for the top spot of “Most social person in the family.” So I think he’s lying to himself when he says he doesn’t really like school. I think he misses it, and when his sister starts school, I think it will make it worse. He asked Leah to create a “homeschool”...

July 30 is Asher’s birthday. When he was just a few days old, I was alone with him in his room one afternoon around his nap time. As I looked at him, I became overwhelmed by the responsibility of raising a child before my God, the Father of fathers. So took his tiny swaddled body in my hands, I knelt on the floor, and I literally lifted my son up in prayer, acknowledging that He belonged to the Father. Of course I had no idea what his life would become, and I certainly didn’t know what the Father was planning to do with his life. That’s probably a good thing.

I can’t tell you how much I love reading my wife’s words the day after his ninth birthday.

From Leah on Caring Bridge - August 1, 2019:

Nine years ago, God gave us a precious son. We named him Asher, which means “happy.” I prayed that he would know and be known by God and that his life would be characterized by joy.
God is...

We’re home! Asher’s symptoms remain steady, and we’re really thankful for that. Please pray that his infusion treatments will continue to minimize his symptoms. The basic plan is that he will have infusions every two weeks at the St. Jude affiliate clinic in Charlotte. If he is able, there is a short one-day (probably overnight) trip to Memphis planned for late September for one of his infusion treatments, and an MRI.

Pray for us as we settle into being home again after another long period away. We’ve spent a total of about 15 weeks in Memphis this year. Coming home is less of a re-adjustment, and more of a figuring out what the “new normal” is. We’re also beginning to think about this fall, when our daughter will begin kindergarten. Obviously, that will have a big impact on our weekday routines. Again, it will be another “new normal” to adjust to.

In the last few weeks...