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March 30, 2003 -- Interim Maintenance #1 (Day 35) This was a busy week for the Harrs. Katie went for her echocardiogram on Monday (3/24). She wasn't very happy about the procedure. The "goo" was cold and the technician wasn't very "kid friendly". I think it reminded her of an unpleasant ultrasound she had before she was diagnosed with ALL. She got through it OK and everything looks good for her to start the next phase in a few weeks. Katie went to the clinic on Wednesday (3/26) for her Interim Maintenance-day 35 appointment. She had her blood drawn for a CBC and played with the nurses while we waited for the results. She was having fun showing off her walking!! Her ANC was over 2000, so we were pleased. Since Katie's counts were up, I thought we could take a trip to the mall on Thursday to get her some new sneakers. My parents came to help. We got there early, but the mall was filled with coughing, runny-nosed kids that were drawn to Katie for some strange reason. My parents were trying to block her from the flying germs, while we waited our turn at Stride Rite. It turned out Katie's shoe size hadn't changed, so we got out of the mall as fast as we could. I never thought a quick trip to the mall could cause so much stress. We stopped at a few other places and headed home. It was so nice getting out for a change!! Friday morning (3/28), when I changed Katie's wet diaper, I noticed that her urine was orange and she was complaining that her back hurt. I called the clinic. They suspected she might be dehydrated and wanted me to bring her right in for some IV fluids. She never likes have her port accessed, but once the "tubies" were in place, she was OK. We played "Candyland," "Chutes and Ladders," "Go Fish" and catch, until she got enough fluids and they were able to check her urine. A few hours later, we got the OK to go home, but Katie didn't want to leave. She was having too much fun playing with her doctor and the nurses! Her doctor wanted to play it safe by increasing her fluids to keep her out of the hospital this weekend. During our outing on Thursday, I was so excited to see the light of day, I wasn't paying attention to the amount of fluids she was getting in. Katie was sick with nausea and vomiting for almost a week as a result of the spinal chemo, IV chemo and all the oral chemo. I was surprised she didn't put up too much of a fight with her oral meds this week. When she's not feeling well, she usually gags when she has to take her medicine. Katie got everything down and really didn't give me too much trouble with it. I mixed all the pills with a few drops of water or juice and sugar and gave it to her in a syringe. The sugar seemed to help disguise the taste quite a bit. She was so happy to have filled her chart and got a special toy on Saturday for all her hard work!! The calendar really seems to be working well. She knows what's coming by the colors of the dots (i.e. blue means a doctors appointment, orange is the Methatrexate, green is the Dexamethsone, pink is the Bactrim, etc.). She gets a lollipop or a piece of chocolate after a blood draw, a small toy on Saturday when she finishes a week of medicine or has an unexpected visit to the doctor, and a big treat of her choice (we give her a choice from three things we decide are appropriate) at the end of the month when the chart is filled. The big treat she chose for this month was an ice cream cone! On Tuesday (3/25), I had my ultrasound at Holy Redeemer Hospital high risk center. We met with the genetic counselor after the technician was done with all the measurements of the baby. The baby is measuring a little larger than 21 weeks and everything looks normal. They want to keep a watch on baby's kidneys. They saw extra fluid in the kidneys and want to check the baby again at 36 weeks with an ultrasound, to see if the fluid has gone. The counselor said it was nothing to worry about. I've been having sharp pains running down my right leg that comes and goes. Some days are good, with no pain at all and other days I can barely walk. I called my OB and she told me that it's probably my sciatic nerve being pinched, possibly by the position of the baby. There isn't anything I can do about it and it will probably go away after the baby is born. I've noticed when I carry Katie around a lot, the pain is worse. I'm glad Katie is getting around more without as much help. This Friday, Katie has an appointment with an Orthopedist that deals with kids with cancer. We're hoping all goes well. Hope everyone has a wonderful week and I'll update again next weekend!! Thanks again for your continued thoughts and prayers. |
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