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  • Writer's pictureChristy Walker

What is Neuroblastoma? Lexi's treatment plan.

Reality: Neuroblastoma is complex. High-risk neuroblastoma is devastating with a 50% chance of survival, despite an extremely aggressive treatment plan.
  • Neuroblastoma is the most common cancer in infants (younger than 1 year old). There are about 800 new cases of neuroblastoma each year in the United States.

  • The number of cases of neuroblastoma is about the same worldwide, so environmental factors do not seem to play a role. .

  • Neuroblastoma starts in early nerve cells (called neuroblasts) of the sympathetic nervous system, so they can be found anywhere along this system; but tumors most often form first in the abdomen, stemming from the adrenal gland.

  • Neuroblastoma cells are not all the same; some have gene changes or mutations that make them more aggressive than others.

  • About half of the kids diagnosed with neuroblastoma end up having the gene changes that put them in the high-risk category.

  • High-risk neuroblastoma is so aggressive that it must be treated very aggressively with every intervention available: toxic chemotherapies, surgery, stem cell transplants, radiation and immunotherapy. This standard protocol takes a minimum of 18 months to complete.

  • Even with all of the aggressive treatment, 1 in 2 kids with high-risk neuroblastoma will still not survive.

Lexi's Story: Lexi's Initial Treatment Plan

Lexi began her 18-month treatment plan in June 2018. Because of new research and new clinical trials, the plan looks different for current kiddos, and hopefully will begin leading to improved survival rates. But here is what our year-and-a-half looked like:

Chemotherapy (June-October). 6 courses of chemotherapy are given to reduce the size of the primary/source tumor (in the abdomen) and completely shrink the tumors in her head. Rounds of chemo are given over 3-5 days every 3 weeks. I will dedicate a future blog post to explain Lexi's experience here in more detail.

Surgery (October) Rounds 1-4 of chemo are designed to shrink the large tumor in the abdomen into a size that is manageable to remove by surgery. The surgery was nerve-wracking, but they were successfully able to get all of Lexi's tumor, and she bounced back quickly. This was actually the easiest part of the entire protocol.

Surprise Rounds of Chemotherapy + Immunotherapy (off protocol) (November-December)

After the 6 rounds of chemo and surgery, Lexi still had one small tumor left in her sinus area. The doctor wanted to get rid of that before moving to the next phase, so she did two cycles of a combination of chemotherapy + antibodies (immunotherapy), which ultimately did kill off the last tumor. We found out in January 2019 that Lexi was NED (no evidence of disease).

Stem Cell Transplant (January-March) Even though she was NED, neuroblastoma is so aggressive and has such a strong likelihood of returning, that the rest of the protocol is still necessary. The stem cell transplant consists of two rounds of a very high dose of chemotherapy followed by an autologous (self-donating) stem cell infusion. The high dose chemotherapy is used to get rid of the non-tumor cancer cells that are left, including the cells we found in the bones and bone marrow during diagnosis. The chemo is such a high dose that it completely wipes out the bone marrow; so then they will then infuse Lexi's own stem cells (which they collect from her a few months prior and froze for this) back into her body to re-create her bone marrow. One round is a 3 week stay in the hospital, followed by a couple weeks to recover, then repeat. I will dedicate a future blog post to explain Lexi's experience here in more detail.

Radiation (2 weeks) Radiation is given to the primary tumor site (abdomen). Even though the tumor was completely removed, it is possible that a very small or microscopic amount of tumor was left behind. Radiation will get rid of it.

Immunotherapy (6 months)

Managing lots of pumps and wires with immunotherapy!

In order to ensure that every last neuroblastoma cell is obliterated from the body, patients finish the standard protocol by going through 6 months of immunotherapy. Cancer is able to occur in our bodies because it somehow tricks our natural immune system into not recognizing it as bad, so our immune system allows it to continue growing. In neuroblastoma immunotherapy, antibodies that are labeled to go find a particular substance that is found on the surface of neuroblastoma cells are injected into the body. The antibodies alert the body's regular immune system to recognize the cancer cells as bad so that the immune cell will attack and destroy them. The antibodies are injected over a 10-hour period on each of 4 days. The antibodies are not able to distinguish between cancer cells and regular nerve endings, so they attach themselves to both. This results in the immune system attacking both the cancer cells and the nerve endings, so one of the major side-effects of this immunotherapy is a severe amount of pain. The pain is able to be controlled with high doses of morphine, but finding the right dose of morphine during the first injection was pretty intense. Once we found the right dose, Lexi was ok, not in pain, but very sleepy and doped up during each of the 10-hour infusions.

Love Like Lexi Foundation

As you can see, the standard treatment plan for high-risk neuroblastoma is intense. 18 months of inpatient hospital stays every few weeks (some of which are scheduled, some of which are surprise responses to fevers or other side effects) is a lot for a family to manage. 1 in 3 families end up losing 40% or more of their income in order to be able to manage this schedule as they fight for their child's life. The Love Like Lexi will help cover some of that financial gap as families endure the long road that it takes to treat high-risk neuroblastoma.

Please consider making a donation or visiting our Get Involved page of to help us be able to as many families as possible.

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