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June 8, 2004 -- Maintenance #4 (Days 22-41) I hope everyone had a wonderful Memorial Day weekend. John has been working feverishly to complete Katie's playhouse. It's getting there. We'll keep everyone posted on when the "little house warming" will be. Katie has already prepared the menu... Brownies with lemonade served in tea cups. Dress-up clothes are optional. Katie went for her monthly CBC and IV vincristine (VCR) on Wednesday, May 26. Her counts were too high again. Ideally, during Maintenance her ANC should be between 1000-1500 which keeps the leukemia at bay and she can still participate in relatively "normal" activities. For the past several months Katie's ANC has been in the 2500-4000+ range and John and I have been increasingly worried. In February, her monthly IV VCR was increased. In March her nightly 6MP was increased. Now we're increasing her nightly 6MP and weekly Methatrexate (MTX). Dr. Jill doesn't want to make a huge jump with her chemo because her ANC can take a dive and then she would be off her chemo until her ANC recovers. Hopefully by next clinic visit we'll see numbers we want. Every time Katie gets her IV VCR she also starts her steroid pulse, so every 28 days we have an interesting mix of emotions. At times, it's really hard not to laugh at some of the things Katie comes out with. I want to share a few doosies with you... Remember, she's 4... While sitting on the potty: "Oh gross!!! Mommy!!! My poopie smells like egg salad!! I HATE egg salad!! Come in here and smell it!!" Kyle grabbed one of Katie's drawings, excuse me, masterpieces. Here is the drama that followed: "It's ruined. Ruined, I tell you!! Ruined!! I'll never draw again!!!" Oh, let's not forget the ravenous appetite. Her favorite snack these days is a toss-up between a kosher pickle and milk or tortilla chips with spicy salsa washed down with milk (yuck). After her THIRD breakfast (1. cheerios, 2. pancakes, 3. A bagel) the other day, she wanted potato chips and ice cream. I hold her that she had to wait until after lunch because it was only 9:30am. "After lunch!!! I already had breakfast, lunch, AND dinner!!! I'm ready for my midnight snack!!!" Katie had her appointment with the head of Orthopedics yesterday. Comparing the x-rays from December 30, 2002 to the ones they just did for this appointment, they saw little improvement. Dr. Dormans requested a DEXA scan (bone density) be done. As he walked out the door, he said he will forward a letter to Katie's oncologist and inform her of his findings and list her medical conditions: ALL, past compression fractures, current spinal compressions, osteopenia and scoliosis. Scoliosis! When did that come up! There was a medical student in the room that explained that a lot of kids may have scoliosis and there is no explanation as to why they get it. The new spinal compressions which are in her upper middle back are where the abnormal curvature appears. Maybe there is a connection? They don't plan to do anything to correct it at this point. We'll see what happens after the DEXA scan. Katie has been swimming her heart out since September. At the end of each session, she is tested to see if she's ready to move up to the next level. She has mastered all the strokes, kicks, breathing, and so forth, but isn't strong enough to swim with out the help of a floatation device (bubble). She has watched many other children be moved out of the 'Pikes' to the next level, and the next. Each time she says "If I work really hard, will they move me up to 'Eels'?" I try to explain that some of the chemo she gets makes her muscles weak and it's not her fault. Katie gets frustrated and disappointed every time I tell her she has to be in the 'Pike" class again. Katie was tested again last week and.... Drum roll please.... She was upgraded to an 'EEL'!!!! She was SOOOO excited! Hooray for Katie!!!! There has been a noticeable improvement in her strength with the swimming and I wasn't getting a "warm fuzzy" from the camps I've been checking into. So, we'll be enrolling Katie in swim classes twice a week this summer instead of camp. We would like to set up play dates with Katie's friends, also. She's really misses everyone. Katie's social worker contacted the Make-A-Wish Foundation and recommended her for a wish. Katie had her interview with volunteers from Make-A-Wish two weeks ago. She wasn't up to speaking with the "wish ladies" that came to meet her, even after I told her that they were like Cinderella's Fairy Godmother. She had her IV VCR chemo that morning and she was pretty wiped out. She did visit with them and agreed with what I told them her wish was... "To go to Disney World to meet Kim Possible!!" In the event that wish can't be fulfilled, she had to make an alternate wish, which is... "To go to Hawaii to meet Lilo and Stitch!!" We're hoping one of her wishes will come true. We would like to make the trip an "off-treatment celebration" so we are hoping to go next spring. A difficult journey has begun for two families that I've had the pleasure of meeting over the past few months. Their little girls were diagnosed with leukemia. Four-year old Giovanna was diagnosed with ALL on February 14, 2004. Her mom worked at the same YMCA where Katie swims. And, two-year old Alexandria was diagnosed with ALL on May 17, 2004. I met her mom at CHOP at Katie's last clinic visit. Please keep these two little darlings and their families in your thoughts and prayers. Heaven got a new angel this past weekend. Four-year old Miranda Rae Shively from Charlotte, North Carolina lost her fight with ALL and joined the angels on June 5. Our hearts and prayers go out to her family. On a much happier note, we have one less thing to worry about. Kyle had his MRI over the Memorial weekend. He was a real trooper and everything went well with the sedation and procedure. The findings of the MRI showed that Kyle has benign external hydrocephalus. He has a normal-sized brain and excess fluid around that brain which is causing his head to be larger than normal. He should develop normally and sometimes this condition resolves itself. What a relief!! Thank you for listening to my ramblings. Writing these updates and working on "Katie's Story" web site has become therapeutic for me. If you have a moment, please leave a message in Katie's Caring Bridge guest book -- and write often. She checks it everyday and loves hearing from everyone!! It makes us feel good knowing someone is out there listening, too. :-) Wishing all the dads a happy father's day. We'll be chillin' and grillin' at our house this year. We'll have Margaritas for the moms (at least for me)! I keep hearing that they are coming. I hope the (brood X) periodical cicadas don't decide to invade the festivities! Although, I have heard they taste like asparagus (not chicken)!! Anyone have a recipe for cicada salad? We sincerely appreciate your continuing thoughts and prayers! Until next update... Here is Katie's ANC and chemo/meds at last clinic visit: May 26, 2004: ANC 3568, received IV VCR at CHOP, increase chemo at home to--50mg (1 tablet) 6MP Monday through Saturday evenings and 75mg (1.5 tablets) on Sunday evening, 15mg (6 tablets) MTX weekly on Wednesday evenings, 2mg DEX 2 times per day for 5 days (starting May 26), 1/2 tab Bactrim 2 times per day for 2 days (Thursday evening through Saturday morning), 1 Tums daily or 1/2 Viactiv daily, 1/4-1/2 tsp Zofran every 8 hours or as needed for nausea, 1/2 capful Miralax as needed for constipation/hard stools. Return in 4 weeks (June 23) for CBC, IV VCR and meet with Dr. Ann Reilly. |
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