Caring Bridge - September 29, 2019
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 finally seeing some of the expected effects of the radiation.
To be clear, Avastin is not a ‘cure’ and is used mainly for symptom management. More than likely, the tumor will begin to grow again—but it may have bought us more time with our boy.
Please join us in thanking God for these positive changes.
He’s been working really hard in physical therapy and a great PT (and his Amtryke peeps) here at home, Asher has made some pretty surprising improvements.
The current plan is for Asher to receive two more treatments of the medication that has been treating the necrotic tissue surrounding the tumor. He will return to St. Jude again next month for another follow up with his oncologist, and to visit some other specialists. He will continue his regular checkups and physical therapy that he receives at home.
Some things to pray for:
A cure for DIPG. Our family isn’t the only one suffering because of this disease, and we would like nothing more than to see it eradicated.
Asher’s speech. Communication is one of the most difficult things for us to manage. Pray that he can make some strides in clearer pronunciation, and increased volume
Asher’s heart. Asher has been feeling much better physically, and quite naturally, he wants to continue to improve, and he fights for it, especially in physical therapy. But sometimes he has difficult moments where he grieves what the tumor has taken from him, and tells us through tears that he just wants to be normal again. As you can imagine, those are tough moments for all of us. Pray for us as we lead him through those moments, and pray for Asher that he would be encouraged by truth and love.
Pray for us, as parents. Pray that we would be faithful in holding fast to the hope we have. Pray that we would be able to fully enjoy the present moments we have been gifted and not fear that the worst is yet to come.