The Treatment Plan... FINALLY!

As we began this second fight, we had a long meeting with our oncology team who told us as much as they could about what we were facing, but at that point the knowledge of our future ended 28 days from that point.  After that, there were so many possible treatment protocols based on whether or not Nevan was in remission, how far into remission, whether he was accepted to the clinical trial we requested to be a part of etc.  Without these answers we had no idea what life had in store for us.

Finally after a very nerve wracking month of high intensity chemo, Nevan had a bone marrow biopsy and showed that his cancer was in remission and low enough to move forward on the low risk standard protocol arm of our treatment plan.  We also found out that we were not accepted into the trial that we requested.  We weren't entirely sure how to feel about this as both us and our team spent weeks preparing for participation into the trial.  If Nevan was not as far into remission as he was or not handling the chemo as well as he had been, I think Craig and I would have been more concerned, but since all the news we received thus far was good, we both are relieved that we will not be introducing any more chemicals into an already full treatment plan and allowing Nevan to have a slightly better quality of life as we navigate through the next few months.

 Although his treatment plan is very complex and intense we will try our best to give an overview as to what the next 23 months of Nevan's treatment will look like. Everything is subject to change based on his daily blood counts, remission status and tolerance of the chemo and meds.

To start, Nevans cancer is in remission. While this is great news, it does not mean that his cancer is gone. What it means is that in a small test sample of blood, there were little to no cancer cells found... again.. amazing news!  However this small sample of blood does not represent his whole body and we need to continue to treat for 2 years to ensure that every last cancer cell has been eradicated.  The treatment protocol for relapsed ALL is not easy.

For those who followed us through his first 2 year battle with Leukemia,  this time around will be more difficult with stronger and larger doses of chemotherapy drugs. The layout of chemotherapy is more frequent and overlapping within the protocol. The number of days Nevan will be neutropenic will be much greater than before. The long term side effects and possible damage to his brain and organs has increased drastically and his chance of life-long remission has dropped to 50% from 90%.

The month of February will be almost as aggressive as the first 4 weeks of treatment and will be followed by one last bone marrow aspiration to determine if his cancer is still in remission. After that the month of March will be a similar treatment as February. April and May are considered one block of treatment and will be slightly less aggressive than March. June and July will be a repeat of April and May. August he starts what's called maintenance phase. It has three initial blocks which are August, September, and October of this year. In November he moves into full maintenance which will repeat itself monthly until December of 2017.

Confused yet?! We are slowly figuring it out ourselves. Basically we will continue to push high levels of toxic drugs into him for the next several months. He will continue to visit the hospital several times per week. He will be admitted for treatment some days or if he gets a fever or doesn't tolerate the therapy. He will receive chemotherapy, steroids, several antibiotics and other preventative medication at home daily.

He will miss school for the rest of this semester and not be able to participate in any extra curricular activities or sports. He will feel horrible many days and will have to be kept away from sick people for the entire 2 years. He will be home schooled and tutored until the fall but may return to school as early as May. Nothing is firm right now. Some things we plan will be cancelled and everything can change or be shifted with very little notice.

The battle has just begun...


CUTE STORY OF THE DAY
After watching Nevan and Nylah proudly wearing a different outfit every day (Awesome Xmas gifts from family and friends)...

Daddy: "Ok... why do you guys have a way better wardrobe than I do?"

Without even looking up from what she was doing...
Nylah..." because we are cute... and you are old."

Nothing makes 37 feel old like the words of a 5 year old!