REMISSION!

Today was our first appointment after Charly's 29th day. Because they were going to be telling us the results of last week's tests, I took off work again and tagged along. The happy news is "REMISSION!" They use that term when there is 5% or less cancerous cells in her tests. From what they tell us, Charlotte has no cancer cells detectable to today's technology.

By no means does this mean we are finished, but it is another positive step in the right direction.  If they stopped chemo now, the cancer would definitely be back in 3-4 months.  Now we stop what they call the induction phase, and start what they call the consolidation phase.  For the next 28 days, Charlotte will be taking her chemo orally.  This chemo is called Mercptopurine.  She's to take 1.5 pills every night Monday thru Friday, and 1 pill nightly on Saturday and Sunday with no food for 30 minutes before and no food for 30 minutes after.  They want her to take it in pills, so later this afternoon I will be going to find the mini M&Ms and full size M&Ms, and we will work on swallowing pills.  They told us the pills were quite small, but their circumference is the size of a M&M.
The pharmacist can crush the pills and suspend them in liquid, but the oncologist says the mixture is not stable, and we'd have to get it refilled weekly. They are also concerned that we might not shake and mix the liquid enough that they can be sure she gets a consistent dosage each night. We had found that using the pill form of Prilosec, crushed, in a spoonful of chocolate pudding went down much easier than its suspension form. However, the problem with this chemo is that we cannot hide it in any food. They also want us to encourage Charlotte to take the pill with the least amount of clear liquid that she can.

I hope we won't have troubles. If we can coach her to swallow the pills successfully, she will have a much easier time of things. These liquid concoctions we have had to give her have been very nasty tasting.

Charlotte will continue to go into the clinic weekly. They moved our appointment to Thursdays. Each week they will do a lumbar puncture. The doctors felt that she was old enough that we should consider letting them do the lumbar puncture in the clinic, instead of downstairs with the anesthesiologist. They will still sedate her, but she won't be under general anesthesia. They will use a combination of Versed and Ketamine.

The doctors also tell us that the lingering appetite from the month-long steroid use will start to dissipate in this next week or so. Charlotte will probably stop wanting to eat much at all. We are to work on focusing to get her to eat proteins if this starts to happen. She is still carrying a lot of water weight from the steroids. We were told her distended stomach should start to go back to normal in the next couple weeks as well. However, with how solid her tummy is, they cautioned us to watch for her complaining about stomach pain, throwing up, and fever - that could mean she has developed an infection from the extra water retention.

When I start to feel discouraged or scared, I like to review a list of the tender mercies we have seen in Charlotte's diagnosis. I'd like to share them with you:

• Charlotte has been diagnosed with the most common, most treatable form of leukemia (pre b-cell ALL). She is within the age range that is considered to be low-risk (age 2-11).
• Due to the sub-type she has, and the proximity of our world-class children's hospital, we can keep her home, only bringing her in as needed.
• ALL usually can be treated without the need for bone marrow transplants, although for some cases they are required.
• Her genetic testing showed her leukemia occurred from a translocation of chromosome 12 and 21. This is supposedly also associated with a favorable prognosis. (When I asked how so, they said they didn't know why, just that kids with this genetic result tended to do better and are considered "lower risk").
• As yet, there hasn't been discernible cancer cells in her lumbar punctures, which means she doesn't have to receive radiation on her spine and brain. Something I hope we can avoid, because radiation affects the patient's IQ, and Charlotte is such a smart little girl.
• From the literature I've read, another good sign for the future is that they have been able to achieve remission at the 29th day appointment.

The doctors don't like to offer promises or guarantees that they can't keep, but we keep getting to put checkmarks in the positive column. Her oncologist last Friday ended our discussion with, "You have been told that we are pretty good at treating this, right?"

Thanks again for your prayers and support! I will never be able to say it often enough.