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April 23, 2003 -- Interim Maintenance #1 (Day 56) / Delayed Intensification #1 (Days 0 through 7) Hope you all enjoyed the holidays! It's been a busy two weeks since my last update. Monday (4/14), I had my 24 week OB appointment for a moment. Everything is going well and the baby is very active. I did pull a muscle in my belly and am now limited to lifting 10 pounds or less. I'm still on modified bed rest which means only very light housework (like dusting), and I still need to limit the time on my feet. I should be taking a nap in the afternoons to help reduce my stress, but I haven't been able to. Katie's PT appointment on Tuesday (4/15) was great. She had lots of energy and had a blast, she didn't want to leave! She was really making great progress with her walking and building the strength in her arms, legs and trunk. Katie started day zero of her Delayed Intensification phase on Wednesday (4/16). They accessed her port, with the usual resistance from Katie, to get her CBC. Her ANC was 1736 and all other counts were in range for her to start her intense chemo. They started with Zofran to help prevent nausea and vomiting, followed by an IV push of the chemo Vincristine (VCR), then some fluids. Dr Rock wanted to attempt the LP (lumbar puncture) to obtain spinal fluid for testing and to administer Methotrexate (chemo) in her spine (ITMTX). They gave Katie Dilaudid for pain and Versed, which they call "liquid amnesia". She had an allergic reaction to the Dilaudid and had to give her another drug to get rid of the "itchies". Once they got her pretty drowsy, they moved her from the "chemo chair" (little sitting area separated by curtains where they administer treatments), to a hospital-like room. When Katie fell asleep, Trudy (the nurse) brought all of the essentials for Dr. Rock to proceed with the LP. They Katie in position and I got very scared when her pulse/ox monitor started blazing and Katie started turning blue. Trudy had to get Katie in a tight curled position and she was resisting in her sleep. Trudy ended up cutting off her airway so Dr. Rock could properly insert the tube in her spine. That was the first time I had seen that happen, and it only lasted a few seconds, but seemed like forever to me. Katie was fine and the doctor was able to finish without any other problems. While Katie continued to sleep, Trudy started the Doxorubicin (DOXO) infusion, which took about a half hour or so to finish, and then gave her more fluids. Katie slept for another hour while Trudy monitored her. Katie awoke groggy and agitated. We were able to go home after she was stable. After dinner, we started Katie on the higher doses of oral Dexamethasone (DEX). Katie was sick all day Thursday (4/17) and Friday (4/18). Between the DOXO and ITMTX, she was vomiting and had nausea all day. It was tough getting the DEX in when she was having trouble keeping things down. On Friday, we went back to the clinic for her Pegaspargase (PEG) intramuscular injections in both legs. She wasn't thrilled with the injections, but it was over quickly. Apparently the shots sting for a few minutes after being given. Katie got to play in the treatment area for a hour while they watched her for any signs of an allergic reaction (respiratory problems) to the PEG. She was very sore for the rest of the day and night. She continued the DEX twice a day for 14 doses, along with Zofran to help with the nausea and vomiting (3 times a day), and Senna and Mineral oil laxatives in the morning and evening. The DEX has kicked in full force leaving Katie with a distended belly, strange food cravings at all hours of the day and night and extreme moodiness. We went to church on Easter Sunday (4/20) as a family for the first time since the Sunday before Christmas. I had trouble holding back the tears through mass. When it was time for communion, Katie said she wanted to find "Father Prayer" (our Pastor Father Ricci). We found where he was giving out communion. Katie was very happy to be blessed by him and said, with a big smile, "Father Prayer touched my head and prayed for me!" I really think she missed being at church every Sunday. We enjoyed seeing family at our annual Easter gathering. Katie enjoyed the Easter egg hunt!! After that, she was tired and laid on the couch and watched a movie until we left. Katie went to her last PT appointment on Tuesday (4/22). She was looking forward to going, but only got through a half-hour before she was exhausted. The VCR had kicked in causing her joints to hurt and the DEX was making he really moody. Eric was excellent with her and understood her limitations due to the drugs. I told him we would let him know about future appointments. Day 7 of the Delayed Intensification was this Wednesday (4/23). Katie had her port accessed, again with resistance. Her ANC was 6450. She was given the VCR IV push, Zofran (for nausea) and the DOXO infusion, which took about a half hour or so to finish, and then more fluids. I told Dr. Rock about Katie's moods. She is almost out of control at times. Since she can't control her feelings or actions, we can only go with the moods and try to make her as comfortable as possible, and try not to loose our temper during her outbursts. Katie's hungry all the time and craving white food. I'm back to making pasta and pancakes in the middle of the night again. Katie is off the DEX until next Wednesday (day 14). Dr. Rock said she may get a little better before then, but warned us that it will get much worse before it gets better. I also discussed Katie's PT with Dr. Rock. She wants Katie to stop PT until she shows signs of strength improvement again. She did say that her osteoporosis will improve with physical activity, but not to push her to do anything physical unless she really wants to. Dr. Rock also wants Katie to start taking calcium and fluoride supplements. Katie is due for a dental check-up but can't go, even for a cleaning, until she is done her treatments (2+ years from now). During teeth cleanings, bacteria can be released into the bloodstream. Since Katie's immune system is compromised, it's too high a risk for her. During each of Katie's visits to the Oncologist, they check her teeth and gums, and she has a special solution that she brushes with every night that helps kill bacteria in her mouth. Dr. Rock also suggested that we keep Katie home for the next two months or so and not allow visitors. Although her counts were high on 4/23, they will start dropping and this is not the phase to have her catch a virus or get an infection. She also suggested that John and I stay with her and not leave her with a sitter during this phase. We need to closely watch her for fevers and anything that seems odd (as if all that I'm writing about isn't odd enough). The first months since Katie's diagnosis were bad and we got through it. I'm praying for the strength to get us through this phase, too. The most difficult part is watching our precious little girl getting sick and weak all over again. |
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