On Thursday, April 14, 2022, surgeons at Wolfson Children’s Hospital operated on Persy to remove the primary Neuroblastoma tumor from his abdomen.

As we mentioned in our last post a CT scan performed shortly after Persy was diagnosed with stage 4 Neuroblastoma (November 2021) revealed a 13 centimeter wide primary tumor extending from his right adrenal gland. The recent presurgical CT scan revealed that chemotherapy and MIBG therapy had been very effective, shrinking the tumor down from 13 to just 3 centimeters. Analyzing the latest CT scan, the primary surgeon told us that involvement with major blood vessels, other organs, lymph nodes, and nerves were less of a factor in this surgery than in most primary Neuroblastoma tumor resections. He expected to remove 90% or more of the tumor.

Just before 9 am on the 14th, we hugged Persy tight before sending him back for the surgery. We had been dreading this moment and the anxiety that we thought would come with it, but we instead found ourselves in a time of faith, peace, and comfort. Just before, we put our hands on Persy and prayed then and there, knowing that so many others were praying for our boy in different places and moments. What came to us next was a distinct and profound confidence that God was watching over Persy and the medical staff that were caring for him. We are thankful for His blessings and for all of those who have been praying for P.

After nearly 5 hours in the operating room, we got word that the surgery was complete. We learned that the surgeons were able to remove the entire tumor without complications. With Neuroblastoma, it’s common not to be able to remove everything. Even a 90% resection would have been considered a success. A 100% resection is a fantastic result.

Persy did very well during and after the surgery. He was able to go straight from recovery to the Hematology/Oncology unit at Wolfson’s where he is accustomed to being during his chemotherapy. The first night was a bit rough with lots of pain, and we found out on the morning of the 15th that his epidural had either stopped, or possibly even never worked to reduce his pain. The pain management doctors tried to fix it, but were unable to do so and subsequently removed it. Persy had been prescribed morphine as a supplement to the epidural, but had needed the maximum allowable amount. This left him in a considerable amount of pain once the epidural was removed.

In addition to the pain, he began spiking fevers on the night of the 15th which culminated with a fever of 106F on the night of the 16th. His heart rate was also elevated due to the pain and fevers. During the 15th and the 16th Persy only got a few hours of poor quality sleep, which was constantly interrupted by pain, fever, muscle spasms, terrifying hallucinations, and delirium.

According to the doctors, low grade fevers are not uncommon post-op, but it is unusual for them to be as high as what we were seeing with Persy. Many tests were run to find out what was causing these high fevers. As each test came back clear showing no infections or other complications, we were relieved but simultaneously frustrated as P continued to spike fevers into the 17th. In the end, there wasn’t a truly definitive answer, but a viral panel showed that Persy had tested positive for rhinovirus, enterovirus, and coronavirus (not SARS-CoV-2). The doctors believe that his fevers are viral in origin and will subside without intervention. He was finally able to get some much-needed sleep. P slept from about 2 o’clock in the afternoon on the 17th straight through until the early morning on the 18th, and woke up happy and feeling so much better.

Despite all of this, Persy was a trooper all the way through. He even got out of bed, walked a bit, and went for a wagon ride around the unit both days post-op (15th and 16th), which the surgeon had said would be essential to a quick recovery.

Although Persy has still had some pain especially when trying to stand or change positions, his pain has become more manageable as time passes. On the 17th we all agreed it was time to take him off of the IV morphine and switch to an oral medicine for the pain. Since the transition, P has had no unmanageable breakthrough pain.

This afternoon we were discharged from the hospital and got to bring our boy home. Although P is still having some pain especially when he tries to move a lot, we are faithful that the corner has been turned and that he will be able to enjoy a bit of normal three-year-old life before it’s time for cycle five. We’re looking forward to having a belated Easter celebration at the house, as well as celebrating Persy’s third birthday on the 25th.

Let Us Pray

Again, thank you from the bottom of our hearts to everyone who has prayed and thought about Persy. We hope and pray that your own faith and relationship with Christ is strengthened by the experience as ours continues to be. Happy Easter to you all! 💛

For God so loved the world that he gave his one and only Son,
that whoever believes in him shall not perish but have eternal life.
John 3:16