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June 25, 2003 -- Delayed Intensification #1 (Days 48-56 ) / We survived that stressful weekend (2 weeks ago) without having to go to the ER. John was home from work for a couple of days with a sinus infection and, with the help of antibiotics and a strong decongestant, is feeling great now. My parents said they would have stayed home and not gone to the wedding if they knew John was sick (that's why I didn't tell them--they needed a break from helping us). And, the quarantine has been lifted from John's family's household. Katie has been feeling pretty good and her energy level has increased once she got her transfusions. Since she's been neutropenic, we've been stuck inside (with all the rain we've been having, we weren't missing anything outside anyway). Katie went back to the clinic on Monday 6/9 (Delayed Intensification #1 - Day 48) for a CBC and hemoglobin test (arm stick). Her ANC was 437 (neutropenic), and her white blood cells, platelets and hemoglobin were all low but she didn't need another transfusion. We went back on Thursday 6/12 (DI#1-day 51) to have Katie's counts checked again. This time they checked her CBC and did a biochemical profile to check for toxicity from the intense chemo she had a few weeks prior (another arm stick). Her ANC was 260 (neutropenic) and and her white blood cells, platelets and hemoglobin were all still low but not low enough to require a transfusion. Tuesday 6/17 (DI#1-day 56) was the last day of the intense chemo phase and was to be the start of the next phase which is Interim Maintenance #2. Katie had her port accessed and was getting prepped for her spinal tap and chemo treatments (numbing cream on her back), all of which went smoothly. Her CBC came back and her platelets were high (which is OK) but her ANC was 570. In order for her to start the next phase, her ANC needed to be over 1000. We were done for the day and were told to come back in a week to try again. Katie was back at the clinic on Tuesday 6/24 for the start of Interim Maintenance #2 - Day 0. She has really gotten used to the routine. She hops on the scale to get weighed and her height measured, then gets into a chair to have her temperature and blood pressure taken--all without mommy's help! They accessed Katie's port with little resistance. They also put numbing cream on her back. While we waited for her lab results to come back, Dr. Rock assessed Katie's physical progress. With the exception of handling stairs (she still needs to hold onto someone with two hands), Katie seems to be back to where she was before her diagnosis! Katie's labs were good. ANC was 1190 and platelets were in normal range. They started with the usual round of drugs to prep her for conscious sedation. They tried oral drugs at first, but most of it ended up all over Katie instead of in her mouth. They switched to IV meds and Katie helped flush her "tubies". When she was semiconscious, the nurse moved her into another room where Dr. Rock did the lumbar puncture, extracted spinal fluid and injected Methotrexate in its place. Then the nurse came in with her Vincristine IV push. Katie needed to lay flat for at least 20 minutes to let the Methotrexate disperse throughout her spinal area and brain. They were hoping she would sleep for at least a half hour, but Katie wanted to get up a few minutes after Dr. Rock had finished. It was difficult keeping her flat until it was OK for her sit. We couldn't get her to eat or drink anything and she was miserable. After we got her instructions for the next 4 weeks, my mom and I got all of our stuff together and the nurse carried Katie to the car. She fell asleep soon after leaving the clinic. The 45-minutes of sleep for the ride home made a huge difference. It was just enough time to let her "sleep off" the effects of the drugs. She was really hungry and thirsty (she had to fast from midnight the night before). She ate and drank well, and rested on the couch. Within an hour of eating, she started vomiting. For the next two or so hours, she wasn't able to keep anything down, including her Zofran (anti-vomiting med). I was worried about Katie being able to get down and keep in all of her oral chemo she had to start taking before bedtime. Once she was able to keep the Zofran in, she was OK with the oral Methotrexate (MTX), 6MP and Dexamethasone (DEX). For the next 56 days, Katie will be in Interim Maintenance #2. She will be taking oral MTX every Tuesday night at bedtime, 6MP every night at bedtime, and DEX morning and night for five consecutive days (and another 5 days starting at day 28 again). She will have another spinal tap, spinal chemo and IV chemo in 28 days. After the 56 days, we are onto Maintenance!! Katie's immune system will still be suppressed, but she will be able to have fun with her friends now. The days following her spinal taps and intense chemo, Katie won't be feeling much like playing, but the rest of time she should be feeling fine. Some of the meds she's on make her very sun-sensitive and she still has severe osteoporosis, so we will have to watch her activities (no playgrounds). Now that the warm weather is here, she'll be able to have lots of fun swimming!! She's looking forward to playing with her friends and cousins again! I had my week 33 OB appointment on Thursday 6/19. Everything is going well. The doctor says the baby has gotten big even though I hadn't gained any weight in the past month. She wasn't concerned. She said as long as I'm eating healthy and getting rest, the baby will suck out of me what is needed for him/her to grow. I was given my labor instructions (yikes!). She recommended that someone who drives accompany me on my treks to the clinic with Katie, just incase I go into labor or my water breaks. (I've always had my parents, John or his mom with me for support and to help with Katie.) I have my next check-up and ultrasound in 2-3 weeks. |
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