Battle Ended - Wednesday, August 24, 2016

Derek's long, brave battle ended peacefully this morning August 24 at 4:45. The three of us were holding him, and he was not in pain. The hope of heaven is cemented in our broken hearts.

Much Overdue Update: August 21, 2016

When I last wrote, Derek was preparing for 10 palliative radiation treatments to try to halt the progression of tumor growth in his face and neck. He completed those treatments by the end of July and seemed to be making progress. His labs were improving slowly, and the number of

Friday, July 1, 2016

Well, Derek's appetite has improved a bit. You must have been praying. They decided to send him home today, and that goal was just now accomplished. We are HOME! :) The PET scan results, however, are not good. This last round of treatment may

Thursday, June 30, 2016

The day after I posted about Derek's mouth sores, they were dramatically better even though everyone told us they wouldn't clear up until his white count comes back. Yesterday his white count was still zero, but he only had one sore under his tongue. When you pray, God hears. Thank you. They have given him

June 26, 2016

Derek and I traveled home from Stanford two weeks ago. They had a bed waiting for him at Loma Linda Children's Hospital when we arrived, and he was admitted for two days to make sure he was stable. They released him with two IV antibiotics which I administered at home.  Because we

Tuesday, June 7, 2016

This post is difficult for me to write. Derek finished his first round of the clinical trial with Selinexor about three weeks ago. His scans were delayed because of the RSV that put him in PICU for 16 days.  As his white count began to trickle back in and he began to recover from the RSV, his

Thursday, May 19, 2016

The great news today (Thursday) is that it appears Derek is beginning to get his white cells back. Today his white count was .4 (or 400). Even though he is still very weak, he didn't sleep quite as much today and even managed to get out of bed briefly a couple of times this evening without

Tuesday, May 16, 2016

It has been an intense two days since Derek was transferred to the PICU. I'm sorry I haven't posted any updates, but I knew many of you would keep praying even not knowing how things were going. Even though Derek's situation has been critical, certain happenings

Sunday, May 15, 2016

Derek was transferred to the ICU overnight for respiratory distress. He is now on a CPAP machine that will hopefully open his airways again. Though the headgear he has to wear and the constant

Saturday, May 14, 2016

So things have not gotten better for Derek since my last post. Yesterday was crazy. He got blood and platelets in addition to several lengthy electrolyte drips and new medications. Because Derek has no white cells, he has nothing to fight this RSV. The doctors decided at last to give him IVIg in the hopes

Friday, May 13, 2016

Thursday night Derek had a CT that showed considerably more lung congestion. They now say he has bronchial pneumonia. It is not what we wanted to happen, but he has nothing to fight this bug with. Friday, was quite a day. The morning started with a crowd of doctors coming in the door of

Thursday, May 12, 2016

Derek is still spiking fevers of 103*-104*F whenever the Tylenol wears off, which means it is happening four or five times a day. His breathing has gotten worse throughout the week, and now he is on oxygen around the clock. When not on oxygen, his saturation level dips to the low 80's which