Cycle 3 Begins

We have begun our third 84 day cycle (there are 7 total in Long Term Maintenance). I don't know if I have mentioned, but assuming no setbacks, Catherine's last day of treatment is April 21, 2008. As many of you know, our clinic day is Friday, but now that Dr. Joe is alone on Fridays, he cannot do procedures (ie lumbar punctures) on that day. If he did, we'd all be there forever, and I have to say he has done a great job with the schedule so that our time there is not long. So that means that our LPs need to be done on Wednesdays. It was actually nice to go that day as I had seen people I have not seen in some time. The LP went well - I am always worried that they will find leukemia cells in her CNS fluid - and once again she remembered the procedure. To give you an idea of what they do for an LP: first they access her port, take her blood samples, and then hook her up to an IV pole to start hydration and anti-nausea meds. After they get her counts (primarily to ensure that her platelet count is high enough), the doctor starts giving her versed and fentanyl. The fentanyl is a sedative and the versed is supposed to cause temporary amnesia so that she doesn't remember what happened (can I get a high dose of that to cover the past year and next one coming up?:) After the LP, in which they inject methotrexate into her spinal fluid and also take a sample of the spinal fluid, Catherine must lay flat for ast least 30 minutes to prevent a spinal headache. This is the tough part as she wants to play, and since patience is not one of her strong suits, she cries the entire 30 minutes she is laying there. This time she told me Dr. Joe stuck a needle in her back. That means the versed didn't work. I will have to speak to Dr. Joe about that and see if we can increase the dose in June when we go through this again. They also stuck some Q-tips up her nose to swab her snot and check for RSV, the flu and some other viruses as Catherine has had a terrible cold. She was none too pleased with that either. Luckily, all the tests were negative.
I was looking forward to meeting one of the Yale docs on Wednesday. I did meet the woman helping out - Dr. Farzana Pashankar - she was very lovely and had a small conversation with Catherine. She had said that she was hoping to be our doctor that day, but Dr. Joe beat her to the punch. I told her that Dr. Joe probably didn't want to subject her to me and my questions. I am actually glad that Dr. Joe saw us - I have been on top of him about Catherine's doses as she has grown quite a bit in the past few months. He nows calculates the doses right in front of me, and our dose of 6-MP has increased by 25mg/week (not a hell of a lot), and unfortunately, her steroid dose has gone up by .25mg/day (as if I needed to increase the side effects of that one!) Next week we will revisit the methotrexate dose which I think needs to go up by 1/2 pill (yes I learned how to calculate body surface area so now I'm dangerous).
Otherwise things are chugging along. Spring is just around the corner and Catherine will be starting a new art class and soccer (she can't wait to do soccer, I think it's in the Vogt blood). Every so often she tells me that she misses Dr. Elisha and she made me send him an e-mail saying that she misses him and loves him (he must think we are stalking him!) Dave and I are now trying to figure out if we should tell her that her friend Katie died. Catherine has started talking about her a lot - the other day, out of the blue she said "I love my friend Katie". Dave and I have been very careful about not talking about her in front of Catherine, but I am beginning to think this little girl is sending us a message from the beyond. Her parents will be throwing a party around what would have been Katie's 4th birthday to celebrate her life. They want us to bring Catherine, they also said they would love for me to bring Catherine to their house to pick out something of Katie's to keep forever. I absolutely love that idea, but of course that means I have to explain where Katie really is (I recently told Catherine that I thought Katie might be in England - her parents are Brits). We have some time to think about it - if anyone has any thoughts or good books about how to discuss death with children, please feel free to let me know. So that is all for now. Once we get through this monthly dose of steroids, all will be well again!! Thanks for all your love and support!