Preparation for Surgical Biopsy

We have been absent from our family blog for one month exactly as our son Thomas was diagnosed with cancer. We were publishing over at CaringBridge (, but are now going to try to bring the two together seamlessly in order to continue the family blog I have written for 14 years. This blog post is copied from CaringBridge and is being published retroactively. Please subscribe to our family blog to receive updates as I publish!

Today we met with the surgeon for a one-hour consultation and the oncology team for three hours of consultations. (Note to self: stop going to the hospital without snacks. BRING SNACKS ALWAYS.)

The briefest update is that Thomas's neuroblastoma is not safely operable, so he will be having a biopsy taken tomorrow (Tuesday)--instead of complete resection surgery--and then beginning chemotherapy to shrink the tumor before ultimately removing it surgically.  

N.B. Some of you parents are reading this with your children and I would advise you preview these updates first and probably translate them for your kids. I'm writing medically for an adult audience: I'm not speaking quite this medically even to our 13-year-old. I speak honestly and frankly, but in easier and easier language and concepts as our kids' ages are younger.

The MIBG scan reveals that the tumor is estimated to be 10.2 x 7.0 x 9.3 cm and it is problematically encasing the celiac axis and its major branches and the superior mesenteric artery, as well as partially encasing the infrahepatic IVC and the abdominal aorta. It also abuts the main portal vein. It would be far too dangerous to remove the tumor surgically from all those arteries.

On an interesting note, these nervous system cells out of place (outside of the nervous system) were already there even when Thomas was in utero, but they remained in quiescence. Something started them multiplying (cancer doctors don't know what) and our oncologist says that, knowing what we know about neuroblastomas, Thomas's tumor probably started growing only 6-12 weeks ago . . . and grew bigger than a softball.

The new goal is to shrink the tumor with chemotherapy before ultimately removing it surgically. I am trying to reduce three hours of talking with doctors and staff members into a shorter, more basic update for all our loved ones and prayer warriors.

Neuroblastomas used to be classified with the old staging system and starting about two years ago began to be classified with the new staging system, so, in reality, doctors still talk about both staging classifications simultaneously. Thomas's cancer is tentatively classified as a Stage 3  (of 4), which is considered Intermediate Risk in the new staging system (of Low, Intermediate, and High). 
  • If the biopsy reveals that the cancer cells have too many copies of the MYCN gene, that would make it Stage 4/High-Risk.
  • If the biopsy reveals that the cancer cells have unfavorable histology, that would make it Stage 4/High-Risk.

Tomorrow, Thomas will go under general anesthesia for his 1:50 p.m. procedure, have a biopsy taken of the tumor, and have a port put under his skin so that in future he can have very frequent blood draws and receive his chemotherapy without extra IVs. The type of port he is getting will allow him to experience normal activities, including swimming (after it heals up for 5 days)! It will be a bump in his skin on his chest, not otherwise visible.

We will probably be sent home tomorrow by bedtime. However, if Thomas needs a little more time in recovery, Mom and Thomas will spend the night and Daddy will come back to retrieve us the next morning.

The biopsy will go to labs and we will learn the results and the treatment plan toward the end of the following week (I think on Thursday June 25) . . . just enough time for a novena for favorable results!

Then Thomas would begin chemotherapy (maybe that very next week of June 29?). In all likelihood, he will experience two 21-day cycles of chemotherapy, check the tumor for shrinkage (another MIBG scan under general anesthesia?), then two more 21-day cycles of chemotherapy, check the tumor for shrinkage (another MIBG scan under general anesthesia?), then if needed surgery to remove any remnant. At this point in this cancer journey, this is the best case scenario.

Each week, we will visit the oncology clinic to draw labs and see how his blood numbers look and how strong his immune system is. On weeks it is strong, we can still go out and socialize (and our oncologist says he will teach us how to be safer for Thomas). On certain known days in every cycle (Days 8-11), Thomas will have no working immune system and our family will need to stay home from outings. On other weeks when maybe his system just isn't doing so good, we will have to stay home. Infection is the enemy, so any fever registered means Thomas will be admitted to the hospital for an in-patient stay and antibiotics.

The actual infusion of chemotherapy will vary by cycle, but within each 21-day cycle, Thomas and one parent will be in the hospital for 2-3 days or 4-5 days.

This is the the good chemotherapy option (and, ideally, will involve no radiation).

If Thomas' pathology comes back and he is reclassified as Stage 4/High-Risk, the treatments will be much harsher and of longer duration. The oncologist was wise enough not to give us all the frightening details, but the bare minimum description is that (1) it would be 18 months of treatment (versus 3 months), and (2) "the highest amount of chemotherapy", and (3) MIBG treatment, which is a special kind of radiation which would involve hospital stays of something like 5 days each in which the irradiated patient is in a room alone--with Mom or Dad on the other side of glass, unable to touch him for all those days, just talking to him through the glass. I share this horrible possibility only in hopes of inspiring the most fervent prayer that Thomas does not face that treatment.

Thomas himself is joy-filled. We and the Child Life Specialist told him about his procedure tomorrow: he is not afraid. He is so trusting, calm, and happy in the moment. Would that all of us could be so happy in the moment, not brooding on the past, not worrying about the future, and just trusting our Heavenly Father to take care of us!

We have friends who have experience with adult cancer and wrote today: "Cancer is not a cross any of us would have chosen, but its heaviness is the weight of its gold." We have been on this journey for only 12 days, but I can attest to that spiritual truth.

On that note, I will give you the most delightful gift I can give you: a 90-second video of Thomas today, wearing the new (size 4!) doctor's scrubs that a family gifted to him. He has adopted the persona of Dr. Gezund (sounds like Bezund, when he says it, but he's trying to say Gezund) and he does medical examinations, mostly on his stuffed animals.

Specific Prayer Requests:

1. That Thomas's fasting before his 1:50 surgery is not overwhelming for him.
2. That Thomas's cancer cells are still staged as Stage 3/Intermediate-Risk.
3. That the port placement is flawless.
4. That his pain in the days following surgery is manageable.