The first order of business when we returned to Memphis was another MRI, and we were eager for the results. The surge in symptoms had us looking for answers, and we were grateful for not only clear answers, but a solution.

Caring Bridge - June 7, 2019:

It’s been a full day for us here in Memphis. Asher’s MRI today revealed that the cyst has almost completely blocked the fourth ventricle of his brain. Tomorrow (Friday) he will have surgery at Le Bonheur Children’s Hospital here in Memphis to install a shunt to bypass that blockage. This will hopefully bring some relief to some of his recent headaches, and may allow him to come off steroids completely after he has recovered from surgery. We would have delayed it until next week, but the last possible start date for the clinical trial is Tuesday.

Surgery wasn’t our favorite solution, but it was almost certainly to bring some relief...

During one of our meetings with the quality of life team, one of the things they brought up was pain management. In a world with an opioid epidemic, having a conversation about what the standard of care is for someone in Asher’s (and our) position, is a necessary thing. At that time, we were given a couple of pre-filled oral syringes of morphine to have available, should he get to a state where he was in such pain that traditional pain killers weren’t doing the trick

As I mentioned in the previous post, Asher was having a rough time, and, at this point, was consistently complaining about headaches. We were just a few days from our return to St. Jude, but we felt it was time to give him a dose of morphine to see how it would help. So at bedtime, I took one of the syringes, and gave it to him.

That night he slept… like a rock. He woke up much later than he normally did, and he was super...

The day for Asher to visit his fellow third grade classmates had arrived. He hadn’t seen most of them in four and a half months.

Prior to our arrival, the staff tried to gently prepare the students for what they would see. The last time Asher had been in this classroom, he looked like a healthy eight-year-old boy. Now he was confined to a wheelchair, difficult to understand due to speech problems, and visibly bloated from prolonged steroid use. He had gained in excess of thirty pounds over the course of his treatment. To say that the contrast was high is an understatement.

When I wheeled him into his classroom there were silent stunned looks on many faces. In front of them was their friend, embodying the horrors of a broken world.

For his part, Asher was fine. In fact, he had planned a demonstration with Leroy, his fellow port-bearing companion that had been given to him many months...

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...

Caring Bridge Update May 23, 2019

Thank you for praying for us. We’re so thankful that we get to report that Asher is steady at 2 MG of steroids! This increases the likelihood that we will be returning to St Jude next month. His doctors are pleased enough with the steroid wean progress that they have asked us to continue reducing his dose till we get to zero. Please continue to pray for the steroid reduction.

Please pray for us as we prepare for the possibility of going back to Memphis for a few weeks. The level of care Asher needs now is much higher than it was when we were last there, and that changes everything from how we pack, to how we sleep.

Continue to pray that we will trust God in where and how He is leading us. I have no doubts that He is hearing our prayers and yours, and so we move forward in faith that this path is how God is answering those prayers. And even if...

Caring Bridge Update May 2, 2019

Today we will attempt to step Asher’s steroid dose down below 5 MG for the first time since late March. We’re a little on edge, because the last time we did that, he began to vomit frequently, and had to go to the hospital for an overnight stay. Please pray that we can step down to the recommended 2 MG or less dose over the next couple of weeks.

The army of doctors and surgeons have all agreed that it would not be a good time to drain the cyst, due to the risks of surgery with his present symptoms. We are grateful for the consensus, and yet it’s hard for us, because we know that the cyst has created some of the symptoms he is presently experiencing. Pray for us as we have to continue to accept decisions like these, trusting God, and the kind medical professionals He has placed in our lives.

We have had an answer to prayers in that we’ve seen...

April 26, 2019

Thanks for your prayers for us while we were away last week. On Wednesday, Asher had an MRI, and the results are mixed. The inflammation due to radiation seems to have dissipated, however, the cyst that formed at the biopsy site appears a little bit larger. This brings us, and our doctors back around to examining whether or not there should be an attempt to drain the cyst. There are significant risks for anyone in his condition, particularly when it comes to breathing, especially the ability to be put on a ventilator for surgery, and taken back off when the procedure is complete. Pray for us and our doctors as they assess him, and pray that all of us would have wisdom, and that Leah and I would make the best decisions with the information we have.

From the beginning of my son’s diagnosis, a friend of mine, who is also a nurse, did his best to balance his...

April 15, 2019 Update:

Over the course of the last week, Asher’s symptoms, though still significant, have plateaued to the point that his doctors and nurses agree with the family that a short getaway is worth attempting. To that end, the Ammons family will be traveling to Florida this morning to visit Universal Studios in Orlando, and to see family living in that area. Air travel remains a risk for Asher, so we will be traveling by car. Please pray that Asher’s symptoms would remain stable, and for safety and wisdom in traveling.

To this day, I’m still surprised we made this trip. It felt so risky feeling as though Asher could crash at any moment. His inability to be mobile made it such that he had to ride in the front passenger’s seat all of the time. It actually worked out okay, because either Leah or myself would sit directly behind him, and be able to reach him and give him what...

April 5, 2019 Update:

Since we arrived back home, Asher has shown increasing and alarming symptoms. An MRI revealed evidence of tumor progression as well as a cyst that has formed near the site of his biopsy. He is very weak right now, and Leah and I are faced with a number of very difficult decisions about treatment. We beg you to pray alongside us for healing, wisdom, and mercy.

There was genuine debate between very intelligent medical professionals as to whether or not there was real tumor progression happening. Regardless, the cyst was real. It formed as a result of radiation treatment that had been very effective, as there was a lot of dead tumor tissue. It’s hard to be happy about an effective treatment that precipitates additional crowding in an already crowded space in your child’s skull. But we really had no idea what was going on. All we saw was a massive onslaught of...

March 19, 2019 Update:

Asher has completed his last radiation treatment! And we couldn’t be more excited to have the opportunity to come home for a while, and maybe have an adventure or two.

Pray that our time would be filled with joy, and rest. Pray that God would be the center of our joy, and that we would continue to make Him our refuge when times are tough.

Pray for God’s grace to be present as we all see friends and family for the first time in eight weeks.

Pray for Leah and I as we shepherd our children’s hearts by God’s grace and wisdom, that we would be successful in displaying God’s goodness, faithfulness, and steadfast love, so that our children would see those attributes of God’s character, and find them attractive, and encouraging.

Pray that the gospel - the good news that through the sacrifice of God’s own Son, Jesus, in our place for our many sins, and defeat of death...