Sorry for the delayed post. Apparently the POU has a high turnover rate. We have now been moved to the PEDS regular in patient floor. Here, we are sharing a room with another family. The room itself is nice and we have a decent sized area behind our privacy curtain. The oddest thing about the situation, is that the family on the other side of the curtain is foreign and they speak their language...not English. I feel like I am listening to one of those language learning tapes that helps you learn common sayings, only there is never any translation. Not sure where they're from though.
Anyway on to what everyone is waiting on...the plan, the prognosis and the pathology.
I'll start with the pathology and the prognosis. I've said before, the tumor was originally the size of a grapefruit growing off his right adrenal gland, crossing his midline and wrapping around the vena cava and his renal arteries. He had minimal bone marrow involvement and also "highlighted" on scans with activity around some lymph nodes, a couple of vertebrate and his right femur. He had a very good response from chemo and the tumor shrunk nicely to a point where it was no longer interfering with his vena cava and to where his bone marrow was testing negative for cancer cells. As for the "highlighted" areas, we have not done that scan since diagnosis and will not do it again for about a month.
When Dr. La Quaglia resected his tumor, he also biopsied his liver (which often becomes diseased) and searched for any suspicious lymph nodes or other areas. The pathology report showed all lymph nodes removed were benign and that the liver biopsy was also benign. Awesome news! The main mass showed effects consistent with treatment and showed that the "surgical margin" was free of viable tumor. What that means is that the chemo had shrunk the tumor and what remained of it was dead around the outside where the surgeon made his cuts. All good stuff!
**If you prefer the short sweet version, skip down a ways**
There is no denying though that neuroblastoma is a VERY aggressive form of cancer. It is very treatable in children younger than 18 months who are diagnosed at stages 1, 2, 3 or 4s. However, stage 4 is trickier. Clayton was diagnosed at stage 4. Here are the statistics:
Stage 4 chance of survival- 30%
Stage 4 chance of relapse after successful treatment- 40%
Children of all stages who succumb to the disease within five years of diagnosis- 25%
There are children who beat this cancer and never have another problem. There are children who spend 5+ years fighting this cancer. There are children who have successful treatment, relapse within a few months and rapidly go down hill. There are children who have successful treatment, spend some time in remission and then relapse and go on to have various outcomes. This disease is tricky. It is aggressive. It is hard to predict. It is because we know all this, that I gave you such a long explanation about his prognosis.
What I can tell you is that the doctors are encouraged by Clayton's response to chemo, the pathology report and a particular characteristic of the tumor. They feel our long term prognosis is good. But they, like us, know that we still have a battle ahead. We have to stay on our toes.
The short and sweet version: Based on his response to chemo and the pathology findings, we're cautiously optimistic about is long term prognosis. :)
The plan from here is to start the sixth and FINAL round of chemo tomorrow, repeat all his scans and bone marrow tests in about a month and then start his first round of 3f8 on June 11. Given how good his pathology report was, it is even harder to imagine doing 3f8. But we know how necessary it is. In fact, our initial talk with the neuroblastoma doctor before surgery indicated that we should have been planning to do immunotherapy all along. The way it works, you have COG (Children's Oncology Group) which has 14.18 and then you have MSKCC which has 3f8. Both are forms of immunotherapy meant to do the same thing. While there is a lot of debate about the benefits, or lack there of, of doing a stem cell transplant, there is no debate about the importance of doing immunotherapy. The doctors here say that whether you do their immunotherapy or COG's that there is no question, that if your child has neuroblastoma then you should do immunotherapy as part of your initial treatment. Something that the doctors at USACW failed to mention to us. Not one single mention...ever.
That is where things are going forward.
More later...
P.S. Clayton no longer has anything hooked to him other then IV fluids running through his Hickman. Woot! Woot!
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