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June 7, 2003 -- Delayed Intensification #1 (Days 37-44 ) It's been a very hectic 2 weeks since the last update, with many trips to the clinic to check Katie's CBC. We've been concerned with where certain counts and her ANC were headed. This is the week that most kids in the Delayed Intensification #1 (DI#1) Phase need transfusions. I'd like to give you the "normal number ranges" we look at with Katie's counts and ANC so all the numbers make more sense. ANC (Absolute Neutrophil Count) WHITE BLOOD CELLS (help fight against infection) HEMOGLOBIN (part of the red blood cells that carry oxygen to all parts of the body, providing energy and and color to the skin) PLATELETS (helps prevent and stop bleeding, helps clot blood at an injured area) Katie's activity level was very good over the past two weeks. She did start to get very irritable, fatigued and pale this week, however. We went to the clinic on Thursday (5/29 - DI#1 day 37) for a CBC and biochemical toxicity test to see if any of her chemo was starting to hit toxic levels. There was no toxicity found. Her ANC was 1035, White Blood Cells were 1.5, Hemoglobin was 9.7, and Platelets were 130. We were due back at the clinic on Tuesday (6/3), but Katie started bruising on her legs on Sunday. We went to the clinic on Monday (6/2 - DI#1 day 41) for a CBC and Hemoglobin test. Her ANC was 630, White Blood Cells were 1.8, Hemoglobin was 8.7, and Platelets were 57. Dr. rock said that the bruises were just on her legs and were probably just from normal playing. Katie wasn't ready for any transfusions yet, so we scheduled her next appointment for Wednesday (6/4). On 6/4 (DI#1 day 43), Katie had a CBC and another Hemoglobin test. Her ANC was 580, White Blood Cells were 2.0, Hemoglobin was 7.2, and Platelets were 28. Dr. Rock felt she could go at least one more day without blood products since she wasn't bruising a lot and she was still active (although extremely pale). We were headed back to the clinic on Thursday (6/5 - DI#1 day 44). On the way, Katie started vomiting in the car. We were on the PA turnpike at the time. Fortunately, it was right before a rest stop so I was able to get her cleaned up and changed her clothes. She was very upset and was crying a lot. With all the crying, Katie's blood vessels on her head, face, arms, chest and belly started to pop, causing her to have small purple spots and small bruises all over. Dr. Rock and Pattianne (the nurse practitioner) aren't at the clinic on Thursdays, but they are at Children's Hospital. We told Kathy (the lab tech who does all the blood testing) what happened. She called Dr. Rock to tell her about the bursting blood vessels and did a CBC. Katie's ANC was 374, White Blood Cells were 1.7, Hemoglobin was 7.1, and Platelets were 23. Dr. Rock told us to come to Children's Hospital right away so Katie could get her transfusions. The blood products (packed red blood cells and platelets) were ordered, the nurses put numbing cream on Katie's skin over her port, and we were on our way. The oncology clinic at Children's Hospital is much different from the satellite oncology clinic in King of Prussia that we go to. The nurses and doctors don't have the time to sit and explain procedures in great detail, calm fears or answer the thousands of questions that can come up during the different phases of treatment. They do offer scheduled arts and crafts with an art therapist (Katie loves the crafts), and a child psychologist to guide the parents in helping the kids cope with the multitude of procedures they need to go through. Since Katie had transfusions during her hospital stay (shortly after she was diagnosed), I knew what to expect and how long it would take (hours!!). Katie isn't fond of having her port accessed, especially by a new group of nurses. Even with my instructing the nurses with the way we handle her port access at the KOP clinic (I remove the taped area and wipe the cream off, then hold her in my lap), they didn't listen. One of the nurses pulled the taped area off and ended up causing an orange-sized area of blood cell to burst under her skin. The child psychologist (Kim) wouldn't let me hold her during the access, nor would she let Katie look at me, telling me that Katie just need to be distracted. The whole thing was traumatizing for Katie and left me feeling helpless and angry that no one would listen to me. After her port was accessed, Kim told Katie that she would be getting medicine to make her feel better. Katie started screaming that she wasn't supposed to get medicine. I told Kim to leave us alone so I could talk to Katie. I explained everything that was going to happen to Katie the night before. She knew she may have to get "good red blood cells" and "good yellow cells" that were going to help stop her bruising and give her energy. I explained all this to her again and told her that Kim made a mistake about getting medicine. After Katie calmed down, she was ready for her transfusions. I had a word with Kim and asked her not to interfere with the routine I had set with Katie. We had our own way of handling port access, and I'm open and honest about everything Katie goes through. Kim insisted that kids her age don't need to know too much and that most kids get upset about getting blood. I'm sure many kids need distractions, don't need details, and having the parent not be part of the procedures work for them. She obviously doesn't know my daughter!! Katie needs to see my face to know that everything will be OK and she wants to know what is going to happen each step of the way. The next time we have to go to the clinic at the hospital, I need to request that the child psychologists leave us alone. Katie did well with the transfusions of platelets and packed red blood cells. She helped the nurses clean her "tubies" and even flushed them with saline solution herself. She spent her time playing games, coloring and watching TV with headphones (something new for her). I spent my time trying to get comfortable in the hard chairs they have for the parents. When the nurse was ready to remove Katie's "tubies", I asked her if we could go into a private room and to let me remove the covering over the accessed area. This nurse worked with me and listened to how Katie is comfortable with this procedure. The removal of the "tubies" went well and Katie was only slightly upset by it (which is normal for her). After a full day at the hospital clinic, we headed home. Katie did well the first 24 hours with no adverse reaction from the blood products. Since platelets only last 3 days, and the packed red blood cells only last 5-7 days, we are on a "bruise watch" starting Sunday (6/8) and a "pale skin watch" starting Tuesday (6/10). We return to the clinic on Monday (6/9) for another CBC to see where her counts are headed. About 4:30 Saturday morning (6/7), Katie woke up crying that her mouth hurt, she had an upset tummy and her throat was sore. I took a look at her inside cheek. She had bitten it and it was bleeding. Not a good thing to happen while she's neutropenic! I helped her clean the area with an antiseptic mouth wash and woke up John. He was really pale, had a sore throat and was sweating profusely. He took his temperature and it was 101F. I told him to go back to bed and I would handle Katie. After she calmed down, I took her temperature and it was 99.7F. I got her some apple juice with Zofran to settle her tummy. We got back to bed, cuddled, a started watching a short movie until she fell asleep. When we woke up this morning, Katie still had a 99.7F temperature. John's was still over 100F. He needs to stay clear of both of us until he's feeling better. My parents are out of town for the weekend, attending a wedding. John's parents and sister were exposed to Fifth Disease from one of my niece's friends who stayed over their house last weekend, so they have to stay away from us for 14 days (which isn't until next weekend). If Katie's temperature hits 100.4F we have to call the hospital for instructions, which may be just to sit tight to see if it goes higher. If her temp hits 101F, we are off to the hospital immediately and Katie will be admitted for at least 10 days for a round of antibiotics. I'm getting the hospital bags ready in the event that we have to go. I'm a bit stressed out right now, to say the least. Hopefully, the remainder of the weekend will be uneventful. I'll keep everyone posted. NEXT: June 25 -- Delayed Intensification #1 (Days 48-56) and Interim Maintenance #2 (Day 0) |
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