Just in Time

It was time to prepare to go back to Memphis, and it felt like it was just in time. Some old symptoms were creeping back in, and it made for an anxious time. We had developed a deep trust as to how the staff at St. Jude could take care of our son, and bring him back from the brink, so to speak. Frankly, we were a little exhausted from constantly wondering if we were doing the right things, and making the right decisions in caring for him at home. And the bottom line was, our son was experiencing pain, so we were more than ready to put him back in the hands of the experts.

Caring Bridge - May 30, 2019:

Over the weekend, Asher experienced a spike in a few symptoms that we’ve seen before: increased quantity and duration of headaches and fatigue, and difficulty with breathing, speech, and urination. We’ve been holding steady since, with some small improvements, and we have not changed his steroid dosage in over a week. Please pray that his symptoms don’t worsen.

Asher has been cleared to return to St. Jude’s in Memphis to participate in a clinical trial. His first appointment is an MRI scheduled for June 6. It’s a phase 1 clinical trial, which means they will be testing dosage levels, and examining how the body metabolizes the medication. Please pray that there will be no adverse side effects from the clinical trial.
The last few nurses to access Asher’s port have had a difficult time, and it’s only gotten worse each time, often with Asher having some pain afterward. The clinical trial will require blood work, and thus, port access. Please pray that the medical staff in Memphis can sort out the problem with his port, not only for the clinical trial, but so we can know what to tell his medical care team when we return home.

We have put in a request that Asher would be admitted to inpatient care when he gets to Memphis. We believe that he could use a few days of round-the-clock care to work toward improving some symptoms, such as breathing, in a meaningful way. Please pray that the doctors would consider our request, and respond with the best decision.

On Friday, Asher is planning to visit his classmates for the first time since he left school in January. Many of them haven’t seen him since then, and my heart is heavy for them. Pray for their little hearts. Pray that no flicker of faith in them would be quenched. Pray that Asher can communicate as clearly as possible, as he has a difficult time with speech. Pray that there would be visible joy in the midst of it.

We are thankful that Asher has been in good spirits for the last couple of weeks. He’s been less despondent and more like himself lately, joking around, making fun of my video game skills, dancing the best he can lying down, telling me he’s going to try to roll out of bed to escape while humming the theme to “Mission Impossible.” We are so grateful for these small joys. The blessing and the curse of a DIPG tumor is that the patient is fully aware of what the tumor is doing to them, that is, what it’s slowly taking away. That always feel like a threat to how he sees the outlook for his day. Pray that his heart would remain strong. Pray for us as we encourage him. I desire for him to be convinced that for those of us in Christ, this thing we call “life” is barely a beginning, and real life hasn’t even started yet.

As always, thanks for praying for us.