A Quick Update

I just wanted to give everyone a quick update from my last post. Catherine's IgG levels are low - they are 320 and they should be above 500. She needs the transfusion, but try telling the insurance company that! It seems they would rather risk her developing a fever and ending up in the hospital then give her the transfusion. Someone needs to truly expose the insurance companies for what they are - bureaucratic nimrods who don't know how to manage money. Why would you want to pay for a possible hospital visit (a 48 hour stay is upwards of $10,000) when you can just give her a $700 transfusion? It is so annoying!! Anytime insurance stuff comes up, Dr. Joe gets all agitated - he really dislikes them. I would say we should sic Elliott Spitzer on them but it seems he has his hands full with the hospital jerkies in NY. So that is my rant for today.
On the positive side, Catherine's counts continue to be strong - her ANC is like a rollercoaster: 828 last week, 2000 this week, and her hemoglobin recovered nicely in the past couple of weeks. All this depsite the slight increase in her chemo.
I also want to thank all of you who have e-mailed me or called me (sorry I haven't called you back yet Aunt Anita!) regarding books about death. Catherine's teacher actually gave me a couple of good ones. Dave and I are still arguing over this one. He doesn't want to plant the seed in her head that kids die from leukemia. Today I asked Dr. Joe how we should handle this whole issue. Basically he said we can't lie to her because she will learn the truth about Katie eventually and once a child realizes that you lied to them, you lose their trust - and you really don't want that to happen to a child being treated for cancer. He said the next time her name comes up that I need to tell her that she died. That said, he does not think it is appropriate for us to bring her to the party celebrating Katie's life. So I guess that ends up being a compromise for Dave and I - she doesn't go to the party (which is what Dave wants), but we will approach the subject of death when asked (which is what I want). Life is all about compromise!
I have to go now as Alex, who is beyond cranky today, is having a total meltdown.
Thanks for all your thoughts and prayers!

One Year in Remission!

Happy St. Patrick's Day!! For those of you keeping track, today marks the official anniversary of Catherine being in remission. According to Dr. Joe, Catherine will be considered cured if she remains in remission through March 17, 2011. I know there are others who would say that the day would need to be April 21, 2013 (5 years off treatment), but I like Dr. Joe's date better! Yesterday was the third time I had to drive up to Guilford in horrific weather: 3 weeks ago when Theresa Grandma came along, we had torrential downpours here that nearly put Darien under water (one of my friends needed to be rescued from her home!); last week there was this ever so slight snowfall that seemed to wreak havoc on I-95 and there were many accidents; yesterday it snowed again. The ride up wasn't bad, but the ride home took 90 minutes and the roads were terrible. I just now finished shovelling all the ice off our driveway. I'd like to give Dave credit for shovelling out the front part of the driveway and de-icing the cars, but he isn't the perfectionist that I am at snow removal. As a matter of fact, Dave is enjoying his St. Paddy's Day with his buddies in the City; Alex is napping; and Catherine is watching TV although she shoveled a little and then took her beach chair and an unbrella along with another beach chair for her Sheepy and watched me. Oh, and she was drinking lemonade. You would have thought it was summertime the way she lounged!
Yesterday's visit went well. Her hemoglobin has finally been hit by her cold, but her Retic number was good so Dr. Joe wasn't concerned (that just means her body is producing some red blood cells). The thing he is worried about, if you even want to say worried, is that she can't seem to kick her cold. Her lymphocytes have been very low the past 6 weeks which would be a good thing as those were the part of her white blood cells that were cancerous (thus the name acute lymphocytic or lymphoblastic leukemia), however, these are also the part of your white blood cells that fight viruses and she can't do that. Dr. Joe sent out some bloodwork to check her IgG levels (immunoglobulins which are protein molecules produced by B cells as a primary immune defense, each molecule and its clones having a unique binding site that can combine with the complementary site of a foreign antigen, as on a virus or bacterium, thereby disabling the antigen and signaling other immune defenses. ). If this number is low, they will have to give her an IgG transfusion. She had this last year when she was hospitalized for a fever and couldn't seem to kick that virus. Dr. Joe is going to call me and let me know if I need to come in for it. She has a temp of 99.1 so I am kind of hoping she gets the transfusion and we kick this cold for good!
Interesting tidbits from my ever observant daughter: "We haven't seen Dr. MJ in a while, where do you think she is?" I never told Catherine that she was leaving. I figured the news of Dr. Elisha and Dr. Darryl's departures were enough and we didn't see Dr. MJ a lot so I didn't think she'd notice. Wrong!! But I just tell her the truth, that Dr. MJ is hanging with her kids. Catherine said she wants to be a Mommy and a blood doctor just like Dr. MJ. I'd love that!! She was also very excited to hear that we got an e-mail from Dr. Elisha who is settling into his new home in Israel. He is trying to convince people to visit him and says that it is very beautiful there. I told him that Dave and I would visit when we run the Amazing Race! Catherine asked me if he was Irish (they have been learning about St. Patrick in school). I told her no, but said that Dr. Joe was and we should wish him a happy day.
As always, thanks for all your support and enjoy St. Patrick's Day!

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!