Happy New Year

As I write this, my angels are actually sitting together and coloring while Catherine sings "A Whole New World" from the movie Alladin and Alex chimes in with his Christmas medley of "Rudolph", "Jingle Bells" and "Frosty". I love times like this.
Catherine's counts continue to be strong. I am so thankful that she finished her steroid pulse the week before Christmas. Her LP gave her quite a bit of back pain. I never realized the effect the LPs have on her as they have always been given with so many other drugs in the past. Now that we are in Maintenance, I can kind of figure out what drug does what to her.
We had a very busy Christmas Eve and Christmas day with many presents and a lot of food. I spent the day after Christmas trying to organize all the new toys in our house. We pretty much spent the rest of the week recovering and laying low. There seem to be a lot of sick kids out there this week so it's best that we did nothing.
This Friday's visit was Dr. MJ's last day. We didn't see her, so I was only able to give her a quick goodbye. I need to e-mail her when I get a chance and thank her for everything. She will always be a part of my life as she diagnosed Catherine. I still have all the notes she wrote for us on those first few days. Dr. MJ is a leukemia survivor - she had it when she was 2. Back then, it was a death sentence. The fact that she survived and went on to have a succesful career and family always picks me up when I am feeling down. Dr. Darryl will be the next to go on January 15 and then Dr. Elisha on the 31st. I still think I am in denial. The fact that there is this uncertainty about who will replace them makes it that much more difficult. I think they are going to be working with the Yale clinic. I am hoping that if that is the case, they do not bring in the politics I have heard exists up to Guilford. Rather, I would hope that this partnership of sorts perhaps adds value and more resources. We will see. In the meantime, I have the e-mails of the departing doctors and I plan to contact them when necessary.

Looking back at 2006, I realized how lucky I am to have the family and friends that I do. I think one of the reasons I made it through this year is because of all the support we got. You hear so many horror stories of friends that turn away from you and family that doesn't help. We experienced the exact opposite. I rarely had to cook a meal in the first 6 months of Catherine's treatment, I was able to drop Alex off at anyone's house on short notice (or leave him at Grandma's), and I always had a shoulder to cry on. For that I am truly thankful. May you all have a happy and healthy new year!

Cycle 2 Day 1

It's so hard to believe, but we finished the first 84 days of Long Term Maintenance. Wow!! Now we just have 6 more 84 day cycles to go.
Today we went in for a lumbar puncture with methotrexate and Vincristine. Today was Catherine's first LP in 3 months. We've never gone that long between LPs and I have to say I was very nervous that they would find something in her spinal fluid. As far as I know, it was clear, and if something were wrong, I know they would call me immediately so I won't even think about it. Of course wherever there is Vincristine, there is the beginning of a 5 day pulse of steroids. I've already done her first day of it without her realizing it. I stuck it in her PB&J sandwiches. The first dose was just after her LP when she had to lay flat for 45 minutes. She hadn't eaten anything and was hungry. Before I gave her her sandwich, I stuck a pill in it and she ate the whole thing without comment. As I write this, she just finished dinner - another sandwich - and again I decided to stick the pill in it. I watched as she ate and when she ate the piece I had stuck the pill in, she made a face. She then decided not to eat the remaining pieces of her sandwich because her tongue was "spicy". That was definitely decadron spiciness. I can't keep doing this though because I always like to tell her when she is taking medicine and I know if I ask her if I can put it in her PB&J the answer will be no and she will be suspicious every time I make it (she is certainly no dummy).
Catherine's school Christmas concert was this past week. It was so adorable. Some of the kids are such hams. I was a little disturbed to see Catherine fall several times while performing the choreography. It didn't seem right so I asked Dr. Elisha. He and Nurse Jenn just sort of looked at each other and smiled. Apparently, this clumsiness, if that's the right word, is a side effect of the Vincristine. It is very common and should reverse itself when she is done with treatment. I always have to remind myself that despite the fact she hadn't received any Vincristine in almost a month, all this stuff is cumulative and just building up inside of her.
So now we are just waiting for Christmas to come - I can't believe it's just around the corner. The tree and the decorations are up (and I am worried that Alex will soon bring them down) and Catherine has already found some of her gifts (I told her I was saving them for special occasions). Catherine's vacation has already started and she will now be home for 3 weeks! Luckily she has 3 birthday parties next week to pass some of the time as she is perpetually asking me to schedule a playdate for her.
Hope you all have a Merry Christmas, a Happy Hannakah, and may I be the first to say good riddance to 2006!

Train Ride Pictures

The Candy Cane Express!!

Today Catherine, and especially Alex, got a huge treat - a train ride with Santa Claus. This was Alex's first train ride and being the boy that he is - he loved it. The train ride was compliments of a family whose son was treated for leukemia about 12 years ago by Dr. Joe (the head of the practice we go to). At least that is what his grandmother told me on the train so I hope I'm right on that info. It was amazing - patients currently being treated and those who are cured and their families met at the New Haven terminal where there were goodie bags (always a hit with Catherine), performers, and food. All the doctors and some of the nurses were there too with their families. It was nice to see everyone from the office, but Catherine did seem a bit confused when she met Dr. MJ's kids and Nurse Jenn's family, as if they wouldn't have one - it was actually funny. Rudolph and Frosty were there and of all people, Alex was PETRIFIED, literally shaking in my arms. Took a while to pry the death grip he had around my neck, but then he was back to his old rambunctious self. Of course Catherine kept her eye out for Dr. Elisha whom she loves. I was sure to take a picture of her with him and Dr. Darryl so that she can always remember them after they leave.
Speaking of that, we think Catherine may be having some issues with all the change going on at the doctors' office. She has been acting out a bit lately and not wanting to go to school. She has also been misbehaving at our weekly visits. On top of that, she seems to be realizing that what she is going through is not normal. She wants her hair to be long and she is fighting me on her medicine. The other day she asked me if she still had leukemia. Dr. Elisha said that she may be ready to see a child psychologist to help her work through her feelings (I could probably use one too!) Being the crazy mother that I am, I quickly put a call in to my friend's mother who is a psychologist. I was so happy to hear her affirm what I have been beginning to think - that Catherine is tired of all this shit and that despite some people saying that a child her age doesn't understand everything going on around her, she does understand and she is not a happy camper. Our pediatrician, Dr. T, ageed. We happened to have a scheduled visit with him Saturday - Catherine's first with him since her diagnosis. She was so excited to see him, probably because nothing tramautic ever happened to her during those visits. Dr. T and I had a long talk and plan to have another, but basically he said that Catherine is at an age when she is beginning to understand the world around her more and her place in it. She is seeing the upheaval of the changes up in Guilford, and unfortunately she is privy to my conversations with the doctors and she can tell that I am concerned about their departures. The only way she knows how to express her anxiety is to act out. Short term, we think that the best way to deal with this is to stop revolving her life around her counts and her illness and to stop talking about it at home as much as possible. From there, I will meet with a child psychologist alone to see how I can help her manage her feelings. All fun stuff during the holidays!
I have to say, this holiday season has been difficult. Although Catherine is doing great, it is hard, especially when I see Marlo Thomas and the St. Jude kids everywhere I turn. Of course, this is just another bump in the road and we'll get over it and move on.
We are scheduled for an LP in 2 weeks which would bring us to the end of the first 84 days of Long Term Maintenance. Based on the expected last date of her treatment (April 21, 2008), I have basically figured out that Long Term Maintenance consists of 7 three month cycles. So 1 down, 6 to go!
I've attached some pics from today. Enjoy!