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May 3, 2004 -- Maintenance #3 (Days 61-84) / Maintenance #4 (Days 0-4) Our Easter plans were squelched when Kyle came down with a bad cold and fever Easter morning. We tried our best to keep him away from Katie, but Katie ended up getting sick a few days later. I called Dr. Jill at the first signs of Katie's cold on Wednesday April 15. She wasn't concerned about getting a CBC at this point, but told us since Katie had a port, we needed to watch her and call CHOP if she started wheezing or had a temperature of 101.4F or above 100.4F for 2 hours or more. We were reminded not to give her anything (like Tylenol) to mask the fever. Katie played and acted fine until around 4:30 when she complained of being cold. I took her temp and it was 99.7. I kept checking her temp until it was time to call the hospital around 6:45 when her temp reached 101.8. The oncologist-on-call alerted the ER that we were coming. We were off to the hospital by 7:00 and dropped Kyle at my parents. I had our bags packed earlier in the day in anticipation of taking a trip to the hospital and staying at least over night. The standard procedure is a mandatory 24-hour stay if the child has a fever and a port. They start broad-spectrum antibiotics and try to grow a culture from a blood sample for 24-hours to see if there is a (port) line infection. If no culture grows, the child is sent home. If a culture does grow, the child stays in the hospital for 7-10 days and given specific antibiotics to kill the infection. We got to CHOP around 8:30. Katie was immediately seen by a nurse. Her fever was over 102. She was given Tylenol to bring her fever down, her vital signs were taken and her blood pressure was sky-high. We were put in a private room in the ER where Katie was hooked up to a heart monitor and was having her blood pressure checked every 15 minutes. There were two doctors that gave her thorough exams. The nurses accessed her port and drew several vials of blood throughout the time we were there. Katie's counts were good and her ANC was over 1500. The oncologist-on-call was notified of Katie's condition and she spoke to me about a study that is being done regarding children who have cancer, ports, an ANC over 1000 and are coming to the ER with a fever. The study involved Katie getting a dose of a broad-spectrum antibiotic that will last for 24 hours and be permitted to go home instead of being admitted. If there is a line infection, the hospital would contact us and Katie would be inpatient for a minimum 7-10 days or until the infection was cleared. The oncologist-on-call believed (as I did) that the fever was due to her cold and not a line infection. We signed the study papers. Katie was given a 30-minute infusion of Ceftriaxone, they monitored her heart and vitals for an hour after the infusion, she was given a check-up by two doctors again and released. We were home and heading to bed by 4:00am. We were told keep a close watch on Katie, and be reachable by phone until the hospital called with an "all clear". Everything turned out fine--no line infection. Katie is still coughing, but not a much as before. Of course John and I were ready to get her port out right away since our trip to the ER with the fever was because she had a port. Without the port, we could have stayed home and given her Tylenol ourselves. After many discussions with John and Dr. Jill, we decided to keep the port for awhile longer. This was her first fever with the port and it turned out to be of no concern--just an inconvenience to have to go to CHOP's ER. It would be much harder on Katie without the port. She would have to have an IV placed every every 28 days when she would get her IV chemo. With the port, we put Elamax cream on her chest over the port area to numb the skin before they put a needle in the port. Katie says it doesn't hurt to have her port accessed, but just feels weird. She doesn't like seeing the hook needle they use in the port, but she would rather keep the port than get IVs. Katie went to CHOP on Thursday, April 28 for her lumbar puncture/spinal tap (LP) and intrathecal methotrexate (IT MTX) under general anesthesia (GA) and her IV vincristine (VCR). It turned out to be a very long and stressful day. Katie started vomiting during what turned out to be a 2-hour trek to the hospital. We got there around 9:30 and everything was running behind at the clinic. We met with Dr. Evans--a bit of a shock since we were to see Dr. Leahy, but she was on vacation. Katie's counts were good. Dr. Jill stopped by to say hello and check on Katie, which was very nice since she's only in the clinic on Wednesdays. That made me feel a little better. She got her LP/IT MTX and was still under while the nurse and the anesthesiologist were wheeling her bed back to her room in the day hospital. She started gasping for air--she was choking on vomit. UGH!!!--So, so scary to watch. I felt helpless while they doctor and nurse cleared her airway so she could breathe again. She was fine after a few minutes. Of course I was a basket case. After Katie came around, she ate a few graham crackers, the nurse gave her the IV VCR, removed the IV from her port and we were on our way home by 1:30. I don’t know which is worse: doing a conscious sedation and watching Katie turn blue when 2 nurses have to hold her down so the oncologist can do the spinal tap, and then having Katie be crazed for a hour after, or the potential problems with GA like choking on vomit. I believe Katie has three more LP/IT MTX to go. Maybe it's time to go back to the conscious sedations. I'm going to discuss this further with Dr. Jill. I completed the last of three questionnaires and our last weekly phone interview for the "Pilot Study of Silymarin During Maintenance Therapy in Children with ALL and Abnormal Liver Function Tests." Katie is now officially done with the study. I'm curious to hear their findings. We're in the throws of Katie on steroids again. I have a few cute names that some other cancer moms call this fun-loving-time: "Roid Rage", "Steroid Hangover", "The Big Eat 'n' Scream" and my favorite is sung to the tune of Where is Thumbkin? (I changed the words to fit Katie) -- "Kate's on steroids. Kate's on steroids. Cry and scream. Cry and scream. Popcorn, chips and pasta. Watch out she might eat ya. Cry and scream. Cry and scream." Steroids and 4-year olds are never-ending fun!! Just wasn’t to share this funny moment with you. Katie is hungry for graham crackers like they have at the hospital. I put a few on a plate and she has a fit. "They look different from the hospital ones." I assure her that they are the same brand as the kind that CHOP has. She wants ones from the hospital. OK, she changed her mind, she'll have rice Krispies in milk. "NO, not with milk, it's soggy!" I get a new bowl of dry cereal for her. "WHERE'S MY MILK? THE CEREAL IS DRY!!! WHY IS THE WINDOW OPEN??!! THE FRESH AIR IS BLOWING ON ME!!! I DON'T LIKE FRESH AIR! I LIKE THE OLD AIR!!!! Help me take of my dress, IT'S HOT!! WHY DID YOU CLOSE THE WINDOW, IT'S HOT!!! NOW MY CEREAL IS SOGGY AGAIN!!!! WHERE'S MY GRAHAM CRACKERS FROM THE HOSPITAL!!!! I just want to go outside and get some fresh air!" sob, sob, tears, tears... "Mommy, I love you. I just want to lay on the couch, now." Hugs, hugs, hugs... Kyle doesn't know what's going on! He's just looking at me and crying. Oh, my. How many days do we have left of this???? We found out today that Katie was exposed to Fifth's disease over the weekend. Even though her ANC was high last week, we don't know where she is now, so we need to keep a watch for a fever. We'll be heading to the ER at CHOP again if she ends up with a fever over 101.4 again. We'll be watching Kyle for a fever and symptoms, also. Kyle had his nine-month check-up today. He is 24.5" long and 23 pounds 9 ounces. He is hitting all of his milestones with the exception of crawling, but he's getting close. He can get himself around by creeping and rolling across the floor to try to get to what he wants. He is calling John "dada", me "mummy" and Katie "meme". He also says "hi" when you say hi to him. His pediatrician was concerned about the rate of growth of his head, so she ordered an MRI which is scheduled on May 29 at CHOP. She believes it's just "benign external hydrocephalus" (a big head) and told us not to worry. Yeah right!! Here are Katie's ANCs and meds since the last update: April 15, 2004: CHOP ER with fever of 102, ANC <1500, received 30-minute infusion of Ceftriaxone and sent home, continue meds full strength. April 29, 2004: ANC 4609, received IV VCR, LP and IT MTX at CHOP under general anesthesia, continue full strength meds at home--2mg DEX 2 times per day for 5 days, 50mg 6MP every evening, 5 tablets (12.5mg) MTX weekly, 1/2 tab Bactrim 2 times per day for 2 days, 1 Tums daily, 1/4 tsp Zofran as needed for nausea, Miralax as needed for constipation/hard stools. Return in 4 weeks for CBC, IV VCR and meet with Dr. Jill Ginsberg. <Note for myself: Katie's port gets accessed with a 1/2" needle.> |
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