Here is what we know, both about this condition in general and about James's specific manifestation of it. Again, his diagnosis is the melodious sounding B-cell acute lymphoblastic leukemia (ALL), which is the most common kind of childhood cancer and which affects the white blood cells and bone marrow. I will do my best to explain that more, although my head is spinning with medical jargon that I won't pretend to understand. Dr. Charlie, feel free to make any necessary corrections below. Apparently I have picked some of the lingo because after our OR prep conversation at this morning's spinal tap, the anesthesiologist asked me how long I had been a doctor at the hospital. I think I turned bright red. Hmm, I guess the doctors here don't have time to shower either? Do they babble incoherently as well, and ask the same questions many times over? Perhaps I am more coherent right now than I actually realize, but I feel like I hardly make any sense at all when I speak. Maternal instinct? More like acute maternal autopilot (AMA?).
But I digress. Sorry, officer. ALL is a cancer that starts from the early version of white blood cells called lymphocytes in the bone marrow (the soft inner part of the bones, where new blood cells are made). To grossly oversimplify, the white blood cells fight infection and help protect the body against disease. Patients with ALL have too many immature white blood cells in their bone marrow which crowd out the normal white blood cells, so the body has a harder time fighting infections.
Leukemia cells aka "blasts" usually invade the blood fairly quickly. They can then spread to other parts of the body, including the lymph nodes, liver, spleen, and central nervous system (brain and spinal cord) - that is why we are very relieved that as of yet James' cerebrospinal fluid shows no sign of blasts. His diagnosis of “acute” means that the leukemia can progress very quickly, and if not treated, would probably be fatal within a few months. If we hadn't brought him in and he had picked up an infection on the airplane home from vacation, I likely would have been sending out a very different email. So we are counting our blessings.
Because Dana Farber/Boston Children's follows a slightly different treatment protocol than UCSF, where we will take him once he is through his initial month of chemo and cleared to fly safely, the details differ, but overall his treatment includes three phases over the next 2-3 years, hopefully mainly outpatient after we get home:
Induction (NOW, inpatient, 30 days here at Dana Farber @Boston Children's) — to kill the leukemia cells in the blood and bone marrow and put the disease into remission (a return to normal blood cell counts). James is responding really well to the meds thus far and the doctors are happy with his blood counts. The blasts are down to 0 as of yesterday!!! Though of course because the chemo kills the healthy cells too, his blood counts overall are still very low.
Consolidation/intensification — to rid the body of any remaining cells that could begin to grow and cause the leukemia to return (relapse). This phase can last up to 6 months or more, and will likely be both inpatient and outpatient at UCSF. It is possible & hopeful that he could be in school during some of this phase depending on how well he is doing.
Maintenance — to destroy any cancer cells that might have survived the first two phases. That is mainly outpatient, and he will hopefully be in school on a fairly regular basis at that point.
There are lots of scary sounding drugs delivered by IV, spinal tap, and orally during all of these phases - the main ones he is getting right now (apart from the daily steroids) I can only seem to refer to as Asparagus and Vichychoisse, which are just close enough phonetically that the doctors know I'm tracking with them. The side effects suck with them all. The attending oncologist on Day 1 of our treatment told me to think of it like a garden - there are a lot of weeds right now, and they have to go in and kill everything so that the healthy plants will eventually start to grow again on their own. So I guess we're aiming for fallow ground right now. The good news: About 98 percent of children with ALL go into remission within weeks after starting treatment. About 90 percent of those children can be "cured", which means at least 10 years in remission.
As far what James knows? I got creative. He knows that there is his very own Star Wars battle happening in his body right now. He knows there are lots of stormtroopers, aka cancer cells, in his blood. He knows that there are god, strong Jedi fighters in there too, and that the medicines being pumped into his arm nonstop and the pills and liquids he has to swallow despite his utter disgust are giving more power to their light sabers. Our goal? The Return of the Force.
The last fact relevant here, more important than all others: We love you, James. Fiercely, unconditionally, and with ample force. Daddy, Grace and I are fighting here right alongside you with many, many troops of our own. Our hearts go out to all of you fighting with us - that has been a powerful force indeed.
Comments