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March 8, 2004 -- Maintenance #3 (Days 15-35) Katie was able to start her swimming classes on March 1st. She goes twice a week and loves it! It is SO nice to get out again! The monthly VCR chemo is still (and will continue) effecting her muscle strength. The swimming will really help boost her strength without risk of bone injury. It is also boosting her morale. She beams ear-to-ear when she's in the water and chatting with her peers. She loves showing-off her skills and wants to be the first to do whatever the instructor asks. Katie is really having fun!! Katie has been riding her bike, running-around and playing outside while the weather has been nice. We're able to get out to our favorite restaurants with the kids again. Soon, we'll be able to get to the mall to go shopping--one of Katie's favorite things to do (we're in trouble!)! John and I are planning some time just for us. Thanks to some wonderful suggestions, we are planning an afternoon date for lunch and a movie. Katie saw her new oncologist, Dr. Jill Ginsburg, on Wednesday, March 3rd. All of my worrying for the past month has been put to rest. She is a very warm and patient doctor who has four-year old daughter of her own. Although Katie wouldn't speak to Dr. Jill during her check-up, I can tell that she liked her new doctor. Dr. Ginsburg is only in the CHOP clinic on Wednesdays, but she gave me her email address and direct number, which made me feel very much at ease knowing that I could reach her at any time. Katie had her IV Vincristine (VCR). I mentioned to Dr. Jill that Katie's hair was falling out again. She said it was very unusual for that to happen now. They did increase her VCR from .9 to 1.0 which is not a big enough increase to cause hair loss. Dr. Jill feels it may have been a virus that is causing the hair loss--the lower ANC over the past two weeks may support that. The hair loss is slowing now. We'll see what happens with her hair in two weeks, which is usually how long it takes for the VCR to effect the hair follicles. I also mentioned that Katie has been vomiting in the middle of the night. I've been giving her Zofran to help control it. There is no pattern to when she has been getting sick. I thought it would happen mostly on the nights she gets more meds (Wed, Thurs, and Fri), but it also happens on Tues nights when she only gets a half dose of her chemo and nothing else. Dr. Jill found that unusual and wasn't sure what was causing it. I'm to continue with the Zofran until Monday night and then stop. We'll see what happens. (A virus perhaps?) Katie started back on the DEX on Wednesday. Just when Katie is getting back to "normal", she's back on the steroids and we're dealing with her mood swings again. Katie's latest thing is to respond to John and I with grunts (like Kyle's). We have no idea what she wants or is trying to say. When we try to hug her and explain that she needs to use words to communicate with us, she hits or kicks us. It is SO frustrating! Especially since Katie is VERY articulate, and on "normal days" is so loving. Dr. Jill says we need to maintain consistency, but to be aware when it's the steroids rearing their ugly heads. I found that 2-minute "time-outs" work when she's NOT on steroids--she will sit and listen to reason. When she IS on the steroids, there is no reasoning with her. That's when MOMMY needs the "time-outs"! Dr. Jill will contact Katie's orthopedist to find out if she will need a DEXA (bone density) scan to determine how severe her osteoporosis is after being on treatment for over a year. We also discussed vitamins. Katie can't take any vitamins because the folate in the vitamins will interfere with the Methotrexate (chemo). As hard as we try to get Katie to eat a healthier diet all the time, the steroids (DEX) are causing her to crave salty, white food, and there isn't much we can do about that. Apparently, this is the norm for kids on chemo. Hopefully, when she's done her treatment, her healthy eating will return. Katie's liver function test panel came back elevated again. We were assured that this was nothing to be concerned about. Katie is the twelfth participant from CHOP enrolled in Columbia University's "Pilot Study of Silymarin During Maintenance Therapy in Children with Acute Lymphoblastic Leukemia (ALL) and Abnormal Liver Function Tests." She was randomized and given her study drugs. She will take one capsule a day for 28 consecutive days containing either silymarin or placebo, in addition to her other meds. She will be studied for three monthly visits at the clinic. We will be answering surveys of her eating habits (over the past year and the next few months). The study closes on June 30, 2004. We will find out then if Katie received the placebo or the silymarin. Soon there after we will be informed of the results of the two year study. Kyle's eczema is looking much better now. We switched his formula from the regular milk-based to soy-based when he was about one month old because he had a lot of gas and loose stools. I was also breast-feeding him. I suspected he might be allergic to the soy (or something I was eating). He has been weaned and I switched him back on the milk-based formula. He had no reaction to the switch. The rash on his arms and legs is gone and his face looks SO much better (only a small patch on his right cheek). He still has an appointment with a dermatologist in mid-April. We can then follow-up with his pediatrician for his 9-month appointment in early May. I've joined the committee for this year's Leukemia Society's Light the Night Walk. This will be the second annual walk for Montgomery County and is scheduled for October 16. There are six committee members this year (only two last year!), all of whom have a tie to blood-cancer in some way. I'll be focusing on publicity for the Montgomery County event and helping with Logistics and Recruitment. It should prove to be a rewarding experience. Here is a run-down of Katie's ANC and meds since the last update. February 25, 2004: ANC 920, full strength meds (1/2 tablet 6MP for 1 night and 1 tab for 6 nights, 5 tablets MTX weekly, Bactrim 2 times per day for 2 days), 1 Tums daily. Return in 1 week to see Dr. Ginsburg, CBC and IV VCR at CHOP. March 3, 2004: ANC 3241, received IV VCR at CHOP, continue full strength meds at home (2mg DEX 2 times per day for 5 days, 1/2 tablet 6MP for 1 night and 1 tab for 6 nights, 5 tablets MTX weekly, Bactrim 2 times per day for 2 days), 1 Tums daily. Start Silymarin/Placebo study drug 3/4/04 and continue once a day for 28 days. Return in 4 weeks for CBC and IV VCR and labs for study at CHOP. |
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