Bad News or Good News??

Avery didn't make counts this week which means no trip to PCMC. Last night, we ended her second phase of treatment called "consolidation" where we have been giving her 1.2 ML of Mercaptopurine (also called 6-MP) chemo every day since May 27th. She enjoyed throwing away the Chemo bottle today.

With the new phase, "Interim Maintenance I" we were suppose to start, we have to make counts the day before we go to PCMC. This means her blood counts on her ANC need to be higher then 750 (Absolute Neutrophil Count-this is a measure of the infection fighting white blood cells. The neutrophils are the WBC responsible for fighting bacterial infections) or her platelets need to be higher then 75 (blood cells that help in the process of clotting) if there not high enough then we have to wait a week until her counts go back up.
Home health comes the day before to get her blood counts. Last time wasn't the best experience due to them not having a lot of experience accessing children's ports. When the home health nurse called me, I was glad she fessed up that she wasn't real comfortable with doing this. Although she was nurse for 26 years she hadn't had to accessed ports much. So they had us go to the Infusion clinic at the hospital and home health could come & learn how. Avery was pretty brave even asking if we had to spend the whole day in Cedar at the hospital.
I really hadn't even considered that she wouldn't make her counts. Her last ANC count was 1200. I had started packing Avery's bag to leave later in the day, but hadn't had much time to get everyone's stuff packed & ready. The nurse at primaries called 3 hours later to say we wouldn't be making the trip tomorrow, because her ANC was too low at 600. (Her white blood count has also dropped to 1.7, the lowest it has been in a while) It took me off guard and I have to say I was surprised & started getting a little emotional about it. It was unexpected. Don't get me wrong I dread the trips & it was so nice don't to have to go. Although only a little set-back, it means we fall a week behind. Of course, I didn't see any disappointment from Avery. A little disappointing too thinking later... that would have given her 7 days to re-coup to maybe feel good enough for our annual 4th of July camp-out (which may be the only camping done this summer) & given her a 10 day break (we wouldn't of had to go over the 4th weekend), but I know there's nothing we can do about it and a break is nice especially if it's needed to get her body fighting off sicknesses better. Several in our family in the last 2 days started having sore throats, stomach upset or the Boo so we were probably better off to wait a week. It is what it is, so we'll deal with it and move forward. Here's some interesting facts about the next phase:
-This phase she has to make counts: This means her ANC has to be over 750 and her platelets over 75. Her ANC was 600; platelets 475.
-This "Interim Maintenance I" phase lasts 8 weeks (56 days) as long as you don't skip any treatments. On day 31, she gets Methotrexate Chemo in her spine.
-After the first treatment they know that her ANC will drop. That's a given when on Chemo. That's what chemo is doing- killing off the bad cells, but it also kills off the good ones in the process which helps our bodies fight infections. So after the first treatment she'll make counts if her ANC is over 500.
-We go every 10 days instead of 7, of course depending on if we make counts. (This the nurse had to keep reminding me of)
-Days 1,11,21,31 & 41, her chemo consists of Vincristine through her port (which we have had before) Some side effects: Constipation, stomach pain, hair loss, muscle weakness, numbness & tingling of fingers & toes. Yada, yada, yada! Also, she'll be getting methotrexate on these days (this is the same chemo they have inserted into her spine 7 times during her LP's) Side effects: mouth sores, nausea, vomiting, loss of appetite, Yuck, Yuck, Yuck!
-Every time we go for treatments, they up her dosage of the Chemo so I pray that she can do well during this phase. I don't know if I have the energy or emotionally if I can see her in so much pain again, but we'll hope for the best.
Thanks again everyone for their support & concern for our family. It helps keep us going!