Late update-Counts not high enough to start Maintenance

We were suppose to start what's called Maintenance on January 5th, but Avery's ANC wasn't high enough to start.

ANC=600, PLTS 96, WBC 1.6

Maintenance may sound easier, but I'm not convinced just yet. There's a whole lot more pills at home. We now (only) go to Primaries every 4 weeks instead of every 7-10 days! We started Maintenance on January 10th, 2011. We are on a research study that is organized by the Children's Oncology Group (COG) This group is a international research group that conducts studies for children with cancer. They are continuing to research and try to obviously cure this disease, but at the same time do so with the least amount of short and long term side effects. CureSearch is an organization we totally support because 98% of the proceeds goes to childhood cancer research. Some organizations less then 3% goes to childhood cancer research.

Two days later she starting with another ear ache. I didn't want to wait and see if a fever would start because it's an automatic ER visit. I called the on-call Dr. and he was so awesome to meet us on a Saturday, at his office and take a look. It's sad how worried she gets about having a fever. She knows that means hospital for us. She is so sick of the hospitals and was angry at me for taking her. She didn't believe me when I promised the Dr. was only looking at her ear and we would be out of there. She begged and pleaded then angering told me to have Dad turn the car around right now.

Yes, she had a bad ear infection and we got antibiotics to clear it up. At 4:00 a.m. she started with the dreaded fever of 101. We did what were NOT suppose to and gave her Tylenol to bring the fever down. I was sure the fever had to be from the ear infection and I would take her in the next day if she still had a fever. Luckily it went away and didn't come back. I think the Dr. was a little surprise that we didn't follow protocol but it all worked out. More pokes from home health to check counts, Headed to Salt Lake again on January 10th. Crazy how your blood counts can change up or down in just 5 days!

ANC=1300, PLTS 337, WBC 2.9

This was a big appointment for a few reasons. First, we decided to stay on the study so were getting randomized on the study into one of either 4 arms which are:

Arm A: They receive Vincristine and 5 days of dexamethasone (steroids) pulses every 4 weeks with IT Methatrexate (in the spine) every 12 weeks and oral methotraxate of 20 mg/m2 every Thursday. Every night they take an oral chemo pill called 6mp.  (This is currently what the protocol is for all standard Risk ALL kids)
Arm B: Same as Arm A, except instead of 20 mg of methotraxate every week they get 40 mg
Arm C:  They receive Vincristine and 5 days of steroids pulses every 12 weeks with IT MTX in the spine every 12 weeks and oral methatraxate of 20 mg/m2/week, 6mp pill every night.
Arm D: Same as Arm C, every 12 weeks, but methotrexate at 40 mg. 

We randomized on Arm B, which means the most medicine, the most often. Although every 12 weeks sounded so good and from where we had been, I knew I could handle this for the next 1-1/2 years. On the other hand, I was definitely nervous that every 12 weeks wouldn't be enough to kill this beast and not have it ever come back again. I was so dreading having to do steroids every 4 weeks. I had a little break down when Johnny went into a store, just knowing that this battle needed to continue and I just wanted so bad for her to not have to worry about hospital, needles, back pokes, bone pain, stomach pain etc and honestly for us not to have to worry so much.

So Here's our pill schedule for the next 1-1/2 years:

Mon/Tues. Septra (am and pm)
Every Day: 6mp-a chemo pill taken at night. Can't eat 2 hours before you take it or 1/2 hour after.
Every Thursday except week of lumber puncture 12 (yes 12) pills of oral methadrexate.
Every 4 weeks: Vincristine in port and start 5 days of steroids with 5 1/2 pills a day in am/pm
In additional we takes med's prevacid and zantac for her stomach. Just so many pills.

Also, this trip we also had a lumbar puncture with the lighter sedation method again. Avery just hates the days she had to have these. It's scary and makes her nervous. She had ask Johnny the night before, what do I have to do tomorrow. He didn't have the heart to tell her and worry her all night. The next day as we waited our turn to start our appointment. I told her. She seemed ok. She knows what this means. However when it came time to numb her back and start getting prepared she panicked. She was angry at me and said mom, I am NOT going to do this. She was scared and angry that I would let this happen to her. It is heart wrenching to say the least. I hate that I can't protect her from getting this procedure. It scares her. Before we would go downstairs to the RTU and get completely put out, she would say, I don't want them to put me to sleep, what are they doing to me. On this day, she said, just put me to sleep, I don't want to know what they are doing to me. Oh how I hate this! It tears me up inside! I feel like she's losing trust in me.

I love seeing this smile! We have our appointment at primaries tomorrow. It has been so crazy not knowing her counts for 4 weeks. You get so use to knowing every week where her white and red blood cells are and what her platelets are so you know how isolated you need to be. I hate for her to get a poke in her port, but so ready to know what this month of maintenance has done with her counts. She has had a lot of pain in her legs, bottom of her feet, stomach pain this week and several times complaining her eye hurts, which is something new. I picked her up from school yesterday crying as she walked to the car. When this happens you know she really is hurting, because usually she'll try to hold it in, in front of people. If her counts are too high more pills. If they are too low, they will lower the dosage. So glad we don't have a LP tomorrow!