Neuroblastoma

I'm sure some of you have googled "neuroblastoma" after hearing this is what Nate has been diagnosed with. I will do my best to give you a description of the disease and how Nate fits in.

Neuroblastoma is a rare childhood cancer.  Really, all childhood cancer is rare (about 7-10,000 kids are diagnosed with cancer every year, compared to about 11 million adults), but neuroblastoma is very rare (only about 700 cases per year). It is a cancer of the sympathetic nervous system (the fight or flight system), with tumors originating anywhere along the sympathetic nervous system but commonly on the adrenal gland. These tumors are usually formed in the womb or shortly after birth (crazy to think that this has been silently growing in my baby all this time). Neuroblastoma can range from benign (watch and see) tumors, typically found in newborns, to super aggressive tumors that can spread to almost anywhere in the body.

Neuroblastoma is very hard to diagnose because it rarely has any symptoms until disease is wide spread and the symptoms generally mimic common childhood illnesses. The rarity of it also means that your pediatrician has probably never seen a case of it and would therefore not catch it. While the rupture of Nate's tumor that occurred when he ran in to our ottoman caused "spillage" (which could mean cancer cells circulating in his belly), we are very grateful that this occurred, otherwise we probably would have never found this until Nate was a very sick little boy.

Neuroblastoma is categorized a number of ways depending on the tissue and genetic make-up of the tumor, the age of the patient at diagnosis (less than 18 months is best) and the spreading of the cancer. Patient's are categorized as low risk, intemediate risk, and high risk. This risk assessment refers to the aggressiveness of the tumor and therefore the necessity for more or less aggresive treatment. Neuroblastoma is also staged from Stage 1 to 4. Nate is high risk, Stage 3, which means that Nate has a VERY aggressive tumor with a high risk of spreading, but it has not spread. As far as the treatment he will receive, it doesn't really matter if he is Stage 3 or 4, all that matters is that he is high risk. He will receive the same treatment as a Stage 4 patient. The reason he was categorized as Stage 3 is that no metastases were seen on any of his scans and his bone marrow came up clean. There is one spot on his liver where the tumor was sitting and one area down low between his kidneys that are showing "neuroblastoma activity", but the doctors are calling these "invasive areas" or areas left behind at tumor removal and not metastases. These areas will be watched and Nate may need to have more surgery to remove these.

This cancer is rare already...but Nate is VERY rare. In the last 10 years, there have only been about 100 patients in the same position as Nate (with a very aggresive tumor but no spread of disease). Usually a 2 1/2 year old with this aggressive of a tumor would be VERY sick and have cancer all over their body. Nate is breaking the mold already!

So, how do we treat this and make Nate CANCER FREE? Here is a brief overview of Nate's treatment if we stay at PCH. 6 cycles of high dose chemo therapy. Each cycle is 21 days, with 5 days of chemo (usually in the hospital) and 16 days "home". I put home in quotations because, at best, we will be spending lots of long days at the clinic and, at worst, Nate will have to be admitted to the hospital during his "home" time (any time he has a fever, we have to be admitted). The cycles may also be more than 21 days apart if Nate's blood levels do not return to the correct levels fast enough.

After cycle 2, he will have his stem cells collected, where he has to sit still for 4 to 8 hours a day for 2 to 5 days in a row. After cycle 5, Nate will have surgery (if necessary) to remove any remaining tumor areas. After these 6 cycles, Nate will undergo a stem cell transplant. A stem cell transplant is a procedure where they will give Nate a HUGE dose of chemo (about 10 times the amount he already received) that will wipe out his bone marrow and entire immune system. They will then give him his stem cells back so
that he can rebuild his bone marrow. This procedure requires total isolation, in the hospital, for 4 to 6 weeks. Finally, Nate will receive an special antibody treatment that is specific for neuroblastoma. This is a VERY painful infusion, but doesn't have too many side effects. This will take about 6 months to complete, but hopefully can be done mostly outpatient (spending all day, every day for a week every month in the clinic but at least we can sleep at home at night). This is all assuming that Nate's scans remain clear and that he tolerates all the treatments well. Oh yeah, he will also probably have radiation to his abdomen at some point along the way but I dont remember when and I dont really know what that entails yet. Completing all of these treatments gives Nate the best chance at being CANCER FREE FOR LIFE.

Chris and I are also considering a protocol only available at Memorial Sloan Ketteing Cancer Center (MSKCC) in New York City.  I will write more about that later.

I have always been a planner. Pretty much anyone who knows me, even a little bit, could tell you so. Unfortunatley, cancer and cancer treatment don't like planners. We are literally living one day at a time. It's amazing, that after 33 years of planning, it's only taken me 3 weeks to switch to living this way...one day at a time. This cancer and treatment will surely throw us for some loops along the way and we will face them...one day at a time. One day at a time...we will get Nater to living CANCER FREE.

As you can see, the next year and a half are going to be SUPER tough and not at all the way we expected to spend 2011-2012, but I know we CAN get Nater through this.  Especially, with all the love and support of our wonderful family and friends. I keep wondering how at this, really the most difficult time of my life (and I've already been through some doozies), how can I still feel so happy (a lot of the time) and blessed?!? Wow, we must be really blessed!! Thank you all for the outpouring of love and support. You are really lifting us up in our time of need. Please continue to pray for us as we wade through this treatment. We have already had many prayers answered and need many, many more.