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October 26, 2003 -- Maintenance #1 (Days 27-56) It's been over six weeks since I last updated on Katie's progress. Katie's ANC is like a roller coaster ride. Dr. Rock is working on adjusting the chemo so the levels stay some-what consistent. At the start of Maintenance, we were supposed to be able to reduce our trips to the clinic to every other week. Until Katie's ANC stabilizes, we will continue to go weekly. Her ANC counts and chemo over the last six weeks were as follows: On September 16, 2003 (Maintenance #1 - Day 27) her ANC was 518. To boost her counts up, we held her Bactrim and Mercaptipurine (6MP) and Methotrexate (MTX), but continued her 2mg of Dexamethasone (DEX) twice a day for 5 days and she got her full dose of Vincristine (VCR) IV push. On September 23 (Day 34) her ANC was 3696. We restarted her full doses of Bactrim, 2 doses for 2 days a week. The rest of her chemo was at half doses -- 2 tablets (instead of 5) of MTX and one-half tablet of 6MP every evening (instead of 6 days one tablet and 1 day one-half tablet). On September 30 (Day 41) her ANC was 1600. We continued her chemo at half doses. On October 6 (Day 47) her ANC was 1935 and we again continued her chemo at half doses. On October 15 (Day 56) her ANC was 4928. Her MTX was increased to 4 tablets weekly, the 6MP remains at one-half tablet every evening, she started another 5 days of her DEX (2mg twice a day) and she received her full dose of VCR IV push. She'll continue her full doses of Bactrim on Thursday and Friday. On October 21 (Day 62) her ANC was 3354. Her Lymphocytes were in a good range for her to get her flu shot at this appointment. With her chemo and other meds, she will continue with the 4 tablets of MTX weekly, and full doses of Bactrim on Thursday and Friday. Her 6MP was increased to one-half tablet for 3 nights and 1 full tablet for 4 nights. We are switching her daily laxative from Senakot to Miralax. Hopefully this won't cause as much cramping for her. At Katie's clinic trip on day 56, she also got a physical and emotional evaluation. She's doing great. She is a little behind in her physical recovery from her spinal fractures, but her swimming and ballet classes are helping boost her strength, balance and coordination. She will need a DEXA scan in January (when she turns four) to determine the severity of her osteoporosis. We need to keep track of her calcium intake over the next few weeks to see if she needs additional supplements (other than the 2 Tums a day). Emotionally she is "normal" (normal in the world of cancer patients -- not the normal that we knew before her diagnosis). Katie has an understanding of her illness well beyond her years. She is constantly amazing her doctor and nurses with the questions she asks and/or responses she gives. She is so companionate and caring. Many times I have to remind myself that she's only three-years old. Katie's weight and height have always been in the 50th percentile (since birth). Her weight is still in the 50th percentile but her height dropped to the 35th percentile. Dr. Rock told us that the DEX (steroids) would temporarily stunt her growth. She will catch-up but it's possible she may not grow to her fullest potential. We are still dealing with severe mood swings for the week or two following taking her DEX. She can be irrational, irritable, and weepy, one minute, and kind, polite and giggly the next. It's very exhausting. The rash around her mouth and nose had disappeared, and her beautiful skin returned when she was on the lower doses of MTX. It came back again the day after she took the higher dose (4 tablets) of MTX. We used Aquaphor to help it heal--a recommendation from another cancer mom (thanks Staci!!). I guess we'll be using the Aquaphor daily until her treatments end. Katie's hair is growing back beautifully!! Her original color was a dark brown and straight. Now it's thick, full, has a slight wave to it and is a light brown. It's very cute!! Overall, Katie has been feeling pretty good. I've noticed she's been much more tired and fatigued everyday. I'm hoping its just from all the activities she's in now (swimming on Monday and Friday, cooking and ballet on Wednesday and clinic on Tuesday). Dr. Rock is concerned that we may be over-scheduling her, but each class is only 30 minutes, and she wants so badly to be doing things with other kids and to feel normal again. John and I hadn't been out on a "date" in almost a year. We got to go out for dinner to celebrate my birthday and our 5th Anniversary this weekend. We had such a nice time talking and enjoying each others company! Our next date will be a trip to the movies. We're hoping to be able to get out again soon, or at least have some friends over to visit. Katie loves being a big sister to her brother Kyle. His three-month birthday is on Halloween and he's grown so much. He's already wearing clothes that are size 6-9 months and weighs over 17 pounds (he's in the 98th percentile for his height and weight). He's been waking only once at night for a feeding (yippee!). He is a very easy-going and happy baby! We had the Leukemia and Lymphoma Society's Light the Night Walk in early October. There was a nice turnout despite the rain. We were lucky enough to have the rain stop just as the walk was starting. Katie had so much fun, she didn't want to leave. She knew that all the people that were walking knew somebody that had a blood cancer like hers, and that they were there to show their love and support, and to help raise money to help find a cure. She knew the supporters carried the red balloons and those with cancer (or survivors) carried the white balloons. She commented about the few white balloons she saw at the walk and said, "I'm different than a lot of people because I have 'kenia'. But that's OK, mommy. If I keep taking my medicine, some day the 'kenia' will go away, then I can have a red balloon like everyone else." I guess she won't feel so different then. Dr. Rock is always concerned with how the parents are handling having a child with cancer. Every month, when Katie is getting her IV chemo, she asks how John and I are doing. A couple of weeks ago, when she asked, "So, how are you?" I started crying. I kept telling her I was fine. She continued, "You are two months into Maintenance, how are you feeling?" "I can't stop crying. I should be happy. Katie looks great, she's doing great. I don't know why I'm so sad and so scared." She told me that we have hit another milestone. This milestone is the one where everything, every emotion, every fear, finally catches up to us. This is the time for John and I to grieve over the loss of our normal life. We have been so caught-up in understanding Katie's diagnosis, her treatments, CBCs, side-effects of the chemo, her being SO sick, and running to the clinic, physical therapy and the hospital. Our lives aren't CONSUMED by her illness anymore. Our "normal" is still having to be very careful of germs, watching for fevers, and keeping Katie well, especially when her ANC is low. John and I have been spending a lot of time talking about the past year. (Katie started showing signs of her illness before Thanksgiving, and was hospitalized and finally diagnosed on Christmas eve.) We're being "cautiously positive" about Katie's future. When speaking to different people about Katie, it's very difficult to explain how John and I are feeling about her progress. We are happy she's doing well. However, we are still very sad about what she (we all) went through this year, what she is still going through, and we're scared about what may be in store for Katie in the future. We still have a very long road ahead of us, and until her doctor tells us she is cured, I'm not sure any of us will be able to feel at ease. We are very grateful to have so many friends, family, even people we've never met, be so supportive and deeply concerned about our little girl. We wouldn't be able to get through this without every one of you. THANK YOU!!! NEXT: December 5, 2003 -- Maintenance #1 (Days 69-85) / Maintenance #2 (Days 0-12) |
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