Thomas's Surgery Plans for November 18

We are appreciative of the prayers and caring messages from many of you during Scans Week. The short update is that the intended plan is “a go” and five-year-old Thomas will be having surgery on Wednesday Nov. 18. We are being given a good long-term prognosis for Thomas, which gives us great hope, but now Thomas faces even more challenging treatments, which is sobering. If you want to skip my words (too many as usual), we are asking folks to sign up for a prayer vigil at the end of this update.

Did the Chemo Work?

The increased chemotherapy Cycles No. 5 and 6 did cause the first shrinkage of the tumor in six months, but only 5-10% in size, which is not remarkable enough a response to delay surgery. However, it is positive news to celebrate because Thomas has more chemotherapy in his future and now we know his tumor responds to something. Also, Thomas’s catecholamines (a hormone released by the tumor) are still consistently 14-16x normal levels, which the oncologist says means he has a “very active disease.”

A Unicorn

The oncologist says that Thomas is a medical “unicorn” and he sees a patient like this (in his very busy neuroblastoma specialty) only about once a year. The more we read neuroblastoma literature, the more we face that Thomas’s case bears little resemblance to what is classified as Intermediate Risk, but he doesn’t look like High Risk either. The doctor confirmed that his case is quite unusual, but he still maintains a lot of hope for an approximately 90% chance of achieving No Evidence of Disease (we don’t say “cure” concerning cancer) and thinks that if Thomas relapses, we can deal with that, too.

Surgical Plans

Thomas will have a debulking surgery in which the very accomplished surgeon takes away as much of the tumor as he can safely. Tumor spillage and “seeding” are no longer a big concern with neuroblastoma in particular (different cancers behave differently) and due to modern techniques to reduce risk. The goal is to be able to remove 90% or more of the tumor. In prior decades, the goal had always been to remove 100% of the tumor, even if the surgery might last 14 hours and require a whole team of surgeons. This approach came with a high morbidity risk for the patient. The current opinion is that leaving some tumor behind is safer than attempting to remove those portions of the tumor that are dangerously enmeshed with delicate blood vessels. Oncologists now also have more treatment options at their disposal to more safely treat those tumor remnants left behind.

The doctors think and hope that Tom’s portal vein and celiac arteries are merely pressed up against the tumor, but not enmeshed together. However, the most important artery--the superior mesenteric artery--is entirely encapsulated for 10 centimeters. Thomas’s surgeon is calm, conservative, and accomplished, so our spirits were very quieted and sobered when he told us that Thomas’s tumor is probably in the top five of difficulty in his career.

Consolidation Treatment

After surgery, we will be receiving vital information on the cancer from three sources: (1) the surgeon’s post-operative report based on his observations of the tumor, (2) the pathology report from tumor tissue, and (3) the genetic testing report from tumor tissue. With information from all these sources, Thomas’s post-operative treatment plan will be finalized; however, we are certain that it will start with chemotherapy Cycles No. 7 and 8, resuming December 7th (Vigil of the Feast of the Immaculate Conception). After chemotherapy and more scans, Thomas might need to receive radiation (daily for 10 days) or genetic-specific oral drugs like DFMO (for 6-12 months, we think), but those are determinations for another day.

Surgery Specifics

Little Thomas will have to consume only clear liquids starting on Tuesday after breakfast and will undergo “bowel prep” that whole day (hourly Miralax). We will arrive at the hospital Wednesday at 5:30 a.m. The seven o’clock surgery itself should last four to six hours if all goes well. Without complications, we can anticipate spending the first night in ICU just to watch very carefully for post-operative bleeding before moving to a regular room for a total stay of four to five days. Post-operatively, Thomas will have an epidural for a couple of days to control pain (before switching to oral drugs) and an NG tube to nourish him and help with bowel issues.

One of my favorite pieces of advice from the surgeon was when he was telling us when and how we would be able carefully to hold our sweet boy in our laps again. He said that our holding our son would be as beneficial as the pain medications themselves and that he encourages us to hold him a lot (when it can be safely done).

Prayer and Fasting

We beg of your continued prayers during this risky surgery. In fact, if we can humble ourselves and grovel, we are asking if people would mind using the below Sign Up Genius to sign up for any given 15-minute slot during Thomas’s surgery day. That way, at least one person will be praying for Thomas and the wisdom of his surgical team once each 15 minutes.

Thomas's Prayer Vigil Sign Up

Additionally, some in our family will be fasting along with Tom on Tuesday in petition for the Holy Spirit to guide the hands of his surgeon. If anyone else would like to join us in this fast, please feel free to do so. It will be a full breakfast on Tuesday, and then nothing but clear liquids (Jell-o, broth, Sprite, popsicles, etc.) until breakfast on Wednesday.

Because some people have asked, I will let you know that COVID restrictions prevent anyone from sitting vigil with us or even entering the hospital. We wish you could be here with us.

Driving to a shredding event with Daddy

Playing "I Spy" at the clinic

Waiting for his surgical consultation

Playing with a camera toy given to him