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May 23, 2003 -- Delayed Intensification #1 (Day 28 ) Before I get into our events of the week, I'd like to explain what a "CBC" is, and the difference between "ANC" and "Blood Counts" to make sure everyone understands what I'm referring to in my updates. CBC: Blood Counts or Counts: ANC (Absolute Neutrophil Count): Each update I refer to Katie's "ANC" which shows her ability to fight infection. Katie may look healthy and her activity level may be great, but if her "ANC" is below 500, we need to take extra steps to keep her from getting sick. When she is neutropenic ("ANC" below 500), she has trouble fighting the bacteria in her own mouth let alone what is around her. We (the doctors and parents) worry about exposure to children most because of chicken pox and other childhood diseases. We also worry about the one thing that kids are great at sharing -- germs. Kids are constantly putting their hands in their mouths, sneezing without covering their mouths, not washing hands properly, my list could go on and on. All that bacteria can be dangerous for a neutropenic child. Many times people will ask me how her "counts" are. I always assume they are asking about her "ANC" because that is what I refer to most in my updates. And, as I mentioned, I don't pay close attention to her "blood counts" unless the doctor is concerned about something. Katie can have good "blood counts" and a low "ANC" or vise versa. During intense phases of treatment, her "ANC" and "blood counts" will both go down. Her "blood counts" will determine if she needs blood products. Her "ANC" is what will determine whether or not we expose her to the outside world, and whether or not we can continue her chemo and other medicines. We went to the clinic on Monday afternoon (5/19) for Katie's CBC. Her ANC was 2739 and her platelets were in normal range (the two determining factors for her to continue with this phase). She was able to start back on her Delayed Intensification #1 - Day 28 on Tuesday (5/20) morning. Dr. Rock started with a full exam of Katie and a discussion with John and I, reviewing all the side effects and dangers of the new drugs (chemo) she will be getting. Trudy (Katie's nurse) accessed her port (which is always a challenge) and began giving her Dilaudid (for pain), Versed (liquid amnesia), Zofran (nausea) and started her on fluids. They had no problem with the spinal tap or administering the Methotrexate (ITMTX) into her spine. She slept for over an hour after the procedure. Trudy explained how John and I are to give Katie Cytarabine (ARAC) subcutaneous injections at home. While Katie was still sleeping, John administered the first of eight injections. Katie squirmed and screamed for a bit and then fell back to sleep. The needles are small and go under the skin, but the drug stings a lot. Trudy had to wake Katie so she could get a urine sample for testing before they could begin the next chemo. It took over a liter of fluid, and over an hour of coaxing with no sample. They had to give her something to help move things along. Finally, after another half hour, she went. The results came back OK. Trudy began the Cyclophosphamide (CPM) IV drip that would take an hour to infuse. During this wakeful time, Katie was VERY agitated and irritable. We tried to get her to eat and drink something since she wasn't able to eat since midnight the night before. She started vomiting, then wanted something to eat. Dr. Rock ordered some more meds for vomiting and told us to feed her some crackers and juice, telling us that the vomiting would eventually stop. They pumped her with more IV fluids, but we need to get her to drink fluids orally. We left the clinic around 4:15 with our list of things to look for that would be of concern and would require rushing to the hospital. We still had to give her the oral Thioguanine (TG) at bedtime. No matter what she ate or drank for the rest of the day and night, came back up again with in a hour. Katie will be taking TG (chemo) at bedtime for 14 days, Bactrim twice a day for two days a week (helps prevent pneumonia and fungal infection), and ARAC (chemo) injections for 2 cycles of 4 days-on, 3 days-off. The side effects are vomiting, nausea, loss of appetite, diarrhea, hair loss, fever and low blood counts and low ANC within seven to ten days of the start of treatment. At the first sign of fever, slurred speech, unsteady walking, blood in urine or stool, or difficulty breathing, we have to rush her to Children's Hospital. Other side effects that are less common are: abnormal liver function, lung inflammation, and heart damage. Her doctor will be monitoring her for these. Katie's activity level is very good and she's doing well with her walking. As long as I can get her Zofran in every 8 hours, she doesn't vomit. She's lost her appetite and will barely eat anything now. A big change from the food binges of the previous weeks. We have to push her fluids to prevent dehydration and to help reduce the toxicity of the TG. She was VERY unhappy about Mommy and Daddy having to give her shots. She seems to be more angry with me holding her down than with John giving her the shots. She screams and cries for over an hour after the injection, and just wants to be held. It's tough getting the TG and Bactrim in after the injections. So far, its been taking us 2 hours to get in all the meds. Fortunately, we only have 2 weeks of intense meds to give her and then she'll get a break to let her counts and ANC go back up again. Even if her ANC goes to zero, we will continue the meds in this part of the phase until they are done. Dr. Rock told us that during this part of the phase, since the drugs all cause low ANC and low blood counts, most kids end up needing blood products within 10 days and quite a few kids (especially those with subcutaneous ports, which Katie has) end up hospitalized due to fevers. We go back to the clinic on Thursday (5/29) for labs, unless Katie shows earlier signs of low blood counts (pale skin or bruising), has a fever, or shows any of the side effects of concern I've listed above. We have to continue keeping her play limited to indoors or outdoor activities where she can't fall and get injuries that can break her skin or bones (she still has severe osteoporosis). We also have to keep her away from other children until her ANC is high enough. I had my appointment with the OB on Monday morning (5/19) for my week 29 exam. Everything is going well. I had my glucola labs done on Thursday (5/22) to check for gestational diabetes. They'll let me know if there is anything abnormal. Otherwise, I return to the OB in another 4 weeks. John had his one-year follow-up appointment with the pulmonary specialist on Thursday morning (5/22). His CT scan looked good, showing some scar tissue where the drainage tube was placed (to drain fluid from the lung infection). He should continue to get x-rays/CTs every couple of years. We wish everyone a very happy and safe Memorial Day weekend. Until next update... NEXT: June 7, 2003 -- Delayed Intensification #1 (Days 37-44) |
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