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February 25, 2004 -- Maintenance #2 (Days 77-84) / Maintenance #3 (Days 0-14) We've been on a roller coaster ride of emotions when we found out that Katie's oncologist was unexpectedly leaving CHOP almost three weeks ago. We went to the hospital for Katie's spinal tap and IV Vincristine (VCR) and IT MTX chemo on Thursday, February 5th. Her procedure was scheduled with another oncologist and was to be performed under general anesthesia. I was a bit surprised, to say the least. Dr. Alice Rock saw us in the waiting area where Katie was working on some valentines. She told us that Friday, February 6th would be her last day. I was shocked! Katie had her spinal tap and chemo treatments and while we waited for her to awaken in recovery, we were given Katie's discharge papers and on it we were told to set up a follow-up appointment in four weeks. FOUR WEEKS!!! Her counts haven't been stable enough to go that long with out a CBC at at least two weeks! Then we were approached by a doctor who I had never met before, that told us that Katie had abnormal liver levels. She wanted us to join a study for kids with ALL in Maintenance therapy with abnormal liver function tests. I started shaking and getting very upset. Who was I supposed to talk to about this? The KOP oncology clinic was shut-down. The nurses at the KOP clinic having been either leaving CHOP or have been transferred to the hospital since before Christmas. We weren't given any information and there was no plan for transition set-up. The other caner moms from KOP I spoke with felt just as abandoned as I did! No one can imagine the emotional impact to all the "families" under Dr. Rock's care. I say "families" and not just children, because she took care of all of us. After many phone calls to CHOP onco nurses, and Katie's social worker, I was able to get Katie set up with Dr. Jill Ginsburg who is at the CHOP onco clinic only on Wednesdays. Katie's next IV chemo appointment is set with her for March 3rd. At that point, we will talk to Dr. Ginsburg about Katie's abnormal liver function tests. I still wasn't going to wait four weeks before Katie's next CBC. With the help of Sue (head nurse at CHOP onco clinic), we got approval to have Katie's blood drawn on February 17th. Since Katie's ANC had dropped to 772, she'll get another CBC in a week to see where her ANC is headed. Katie is starting to loose her hair again. While brushing her hair the other day, I noticed a lot of hair on the brush. When ran my hand through her hair and it was filled with hair each time. I called the "oncology help desk" and spoke with a nurse about it. She said it is not at all common during Maintenance, but it does happen to an unfortunate few. I'm wondering if they increased her VCR dose now that she's four(?). We're hoping that her hair loss this time is just a thinning and not a patchy/clumpy loss. At first Katie was taking it in stride, saying: "Don't worry, mommy. I have LOTS of hats!" Now that she's been pulling out handfuls at a time because her head feels itchy, she's getting a bit upset about it. Today she said, "Why is this happening again? Now I won't be able to use my hair diddies!" I closely looked at the hair that had fallen out, I noticed that it has a really strange shape. Her hair is about three-inches long now and in roughly quarter-inch increments, it goes from thin to thick, thin to thick, etc. I think it's showing her VCR pulses every 28 days--thin being when she gets the VCR and gradually getting thicker as the chemo leaves her system, then starting over again. It breaks very easily when we brush it, too. It looks SO bizarre! Her hair has also been very dull-looking as its growing in and her skin is looking a bit gray. I'm going to ask about vitamin supplements since her eating habits have become pitiful. Being on chemo, she should be eating a well balanced diet rich in protein. She used to eat a good variety of foods, but lately she mostly consumes milk, popcorn, a bite or two of chicken or beef, pasta, apples, and an occasional broccoli floret. The emotional impact of Katie's diagnosis has been wearing on John and I. I focus all of my energy on Katie, and now Kyle, too. There isn't much energy left for "me" or "us" as a couple. Last year, we only went out twice for dinner as a couple. We've been told, "Get a sitter and go out!", but that's easier said than done. With Katie still taking chemo every night, we wouldn't trust anyone give it to her properly. Our activities are dependant on Katie's counts and where she is in her DEX (steroid) pulses. Her belly is distended and her face maintains that "moon-face" look almost for the entire 28-day cycle. Her mood swings and increased hunger keeps me running from the time she wakes up until she goes to sleep at night for 2-3 weeks straight. Every day for almost a week after she gets her VCR, she just wants me to hold her for hours on end. A few times lately, she's woken in the middle of the night and vomits, most likely form the 6MP chemo she gets every night. The Zofran helps tremendously with that. Her good/normal days have become few and far between. Our families are always there to help any time we need them, but we've been depending on them to help with the day-to-day. We feel selfish asking for more. There are some days that I feel as if I'm going to loose it. I keep telling myself, "Only one more year." John found an article about a study done on families with kids with cancer. They found that the emotional impact is worse for the parents during and long after treatment is over, than it is for the kids with the cancer. So true!!! I know we'll get through this. It just seems endless at times. We can't wait for the weather to get warmer so we can at least get outside!! Katie is signed up for pre-Kindergarten in the fall. We signed her up for three afternoons a week. We're a little scared about having her around a lot of kids, but she really needs the social interaction. And, as long as her ANC is high enough, we need to let her be "normal" again. We obtained a book from the Candlelighters Childhood Cancer Foundation titled "Educating the Child With Cancer: A Guide for Parents and Teachers". We're going to highlight areas in the book that will pertain to Katie and give a copy to her pre-K teacher. Hopefully, it will help prepare the teacher for what to expect while Katie is still undergoing treatment, especially the acute side effects (inability to stay focused, hyperactivity, and emotional mood swings from the DEX, and slower reflexes, fatigue and problems with fine motor coordination from the VCR). Katie's teacher will be coming to meet her and discuss her needs with John and I late this summer. At that point, we will need to address certain issues that may arise while Katie is in school--such as informing the classmates of her cancer and to set up a communicable disease plan (chicken pox, measles, the flu, and strep throat will still be life threatening for Katie). Katie is REALLY looking forward to going back to school. She also wants to go to camp this summer. The local YMCA offers a dance camp which includes ballet, jazz and tap dancing along with swimming and arts and crafts. All of Katie's favorites! It's only for a week so we can work it around her VCR and DEX schedule so she'll be able to enjoy it. Kyle had his six-month checkup in early February. He weighed 19 pounds 10.6 ounces and was 28.25 inches long and still in the 95 percentile. He is hitting all of his milestones. He has eczema (severe in some areas) and is being referred to a dermatologist since he is not responding well to the steroid cream prescribed two months ago. Kyle remains SO pleasant and happy despite the itchy rash that's plaguing him. His personality is really blooming now! He and Katie are best buddies!! Katie has already taught Kyle to blow kisses (he makes a kissing sound). Now she's trying to teach Kyle to share (oh boy!). Here is a run-down of Katie's ANC and meds since the last update. January 29, 2004: ANC 1221, full strength meds (1/2 tablet 6MP for 1 night and 1 tab for 6 nights, 5 tablets MTX weekly, Bactrim 2 times per day for 2 days), 1 Tums daily. Return for CBC, IV VCR, LP and IT MTX in 1 week at CHOP. February 5, 2004: ANC 2144, received IV VCR, LP and IT MTX at CHOP under general anesthesia (Dr. Ann Leahy), continue full strength meds at home (2mg DEX 2 times per day for 5 days, 1/2 tablet 6MP for 1 night and 1 tab for 6 nights, 5 tablets MTX weekly, Bactrim 2 times per day for 2 days), 1 Tums daily. Return for CBC in 4 weeks per Dr. Ann Leahy. At my request, a CBC was done 2 weeks after LP. February 17, 2004: ANC 772, continue full strength meds and return for CBC in 1 week per Dr. Ann Leahy. |
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