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January 25, 2004 -- Maintenance #2 (Days 21-70) We've made it through the first year! Katie had a fun the weeks and days leading up to Christmas. She had loads of fun helping us decorate, wrap gifts and bake her favorite chocolate chip cookies. We had a special treat two weeks before Christmas. US Air sponsored a "Fantasy Flight to the North Pole" just for the cancer kids at CHOP. After going through security, we got to board an airplane headed for Santa's workshop. While we waited for everyone to board the plane, we sang songs and got to meet the pilot, Miss Mary. After taxiing for 20 minutes, and watching the snow falling outside, we arrived at the "North Pole". The Philly Phanatic got on the plane and greeted the 30 families. When we all got off the plane, we met the elves, got to make jewelry and a Santa hat, and played carnival-type games. We dinned on pizza, hoagies and other various fun foods. The kids were able to fill bags with candy from the 'Candy Man'. Then, Santa and Mrs. Claus came to give out gifts to the kids. It was such a nice time for everyone. Katie was thrilled to be there! Click here to see photos Katie had her CBC on Tuesday, December 23 and her ANC had dropped to 572. Since she was neutropenic, Katie was taken off all her meds for a week and we took the advice of Dr. Rock, scaling-down our plans for Christmas. We had a quiet evening at home Christmas eve and a very small gathering of some of John's family and friends for breakfast Christmas morning. Christmas dinner was spent at my parents with my brother's family. We all had a wonderful time together. With Katie's counts so low, we had a tough time keeping Katie and her cousins apart. We found our efforts had failed. Katie ended up with a low-grade fever a few days later and, when we returned to the clinic on Tuesday, December 30, Katie's ANC had dropped to 252. Her CBC also showed signs that she probably contracted another virus. Katie's cousins were coughing at my parents on Christmas. Whatever they had or were getting over, Katie got. She didn't show any signs of being ill other than being very tired and irritable. Dr. Rock told us that since Katie’s immune system isn't working normally, she won’t show signs of illness, like a cough, sneezing or runny nose since those are responses that your body is fighting an infection. Dr. Rock was very concerned about Katie's counts going down and showing signs of another virus. She told us to keep Katie off her meds another week. She also told us be wary of dust and mold in our house because the dust particles could get into her lungs and cause a bacterial or fungal infection. Dr. Rock also warned us that a simple cold could send her on a downward spiral that could lead to pneumonia or some other infection that could kill her. She said, "If she’s one of the lucky ones to be cured, we want her around to enjoy it.” She also said that if she is off of her meds for another week, they would consider doing a bone marrow aspiration to see if she is still in remission. This was a huge jolt for us. We try to do all we can to keep Katie well. We can’t ever let our guard down and we need to remain extremely cautious even when her counts are high. With all this being said, if Katie is going to be around any children, we need to know if anyone is coughing, sneezing, sniffling, scratching, has a rash, runny nose or anything not “normal”. We returned to the clinic on January 6 and were happy to see Katie's ANC had gone up to 1560. After Katie had her IV push of Vincristine (VCR), it seemed to effect her more so than in the past months on Maintenance. She complained of back and joint pain, and was unable to sleep for about 5 nights. We had to give her morphine to help her with the pain so she could get some rest. She also was taking Dexamethasone (DEX) for 5 days. Again, she was much more effected by the drugs this time. Katie's moods have been swinging like crazy. Her belly and cheeks swelled to the point where we thought she was going to pop! Her appetite increased and she ate from the moment she got up in the morning until we had to cut her off at night so she could take her evening meds on an empty stomach. It's been over two weeks since the start of those meds and her appetite has returned to normal, the swelling is down, the pain is gone, and her mood swings are starting to return to normal. Before her next round of DEX and VCR, Dr. Rock will do a toxicity screen to make sure the doses are OK for her to continue. Once Katie's counts started going back up, we were able to breathe again. Last week, Dr. Rock told us to go ahead and do something fun for Katie's birthday with a small number of children since her ANC was 5236. I frantically called all the "Build-A-Bear" stores in the area trying to schedule something near her birthday. Luckily, we were able to schedule a party for her on Monday, January 19. Katie sent out email invitations to her cousins and two of her friends and she was tickled when she got "yes" responses. The kids had a blast making and dressing cuddly friends to take home, and Katie got to enjoy seeing everyone. Of course John and I enjoyed watching her having a great time!! Click here to see photos We've been celebrating her birthday since Sunday at my parents' house when we had pizza and an ice cream cake. Tuesday at the clinic, Katie took cupcakes for everyone. She got to play with some of the kids and she especially enjoyed her time with Chris, a six-year old boy who hasn't been able to walk due to side effects from the VCR he's been getting (flash-back to last winter for Katie). The kids loved the cupcakes and they all made Katie feel very special. She even got some cool gifts from Dr. Rock and the nurses! Katie's 4th birthday was on Wednesday, January 21st. It was her day!! We played video games, board games, did glitter and glue crafts, colored, made a playdoh birthday cake, worked on a sewing project, played "birthday tea party" with her Barbies and listened to the theme song to "Kim Possible" over and over. John's parents, sister and niece came over for Katie's favorite dinner —— spaghetti (NO meat balls) with homemade sauce and garlic bread, and ice cream cake for dessert. She said she loved celebrating her birthday every day, and it was the funniest birthday she ever had. We're going to keep celebrating through the weekend!! As Katie's counts go back to a "normal" range for a kid on chemo, we're back to keeping her isolated from kids until the flu season is over. She will be getting her next spinal tap and IT MTX under general anesthesia and IV VCR at CHOP the first week in February. Kyle is doing great. He is such a pleasant baby. He's almost 20 pounds! We had to switch his infant car seat to one that can hold a larger infant. He can roll over and sit up with help. He's eating infant cereal and has tried a few vegetables. He enjoys making the BIGGEST messes with his food. We're not sure how much he gets in him, but he sure does love the way it feels between his fingers, on his face, in his hair, up his nose, down his neck, in his ears... We go through many changes of clothes each day. It will be much easier when the weather gets warmer and we can feed him in just his diaper!! He looks just like Katie. What a cutie!! I've had the pleasure of meeting many parents of children with leukemia. Everyone has a different story to tell. Everyone's treatment is different. A few things we all seem to have in common are the feeling of loss over the life we once had, the fear of the future, and lack of understanding from others. We've all found that many people take this disease lightly because the cure rate for ALL is 85%. When it's your own child that has cancer, those percentages only give you hope. Dr. Rock summed it up perfectly by saying: “Most parents view it one way--she’s either going to be cured or she’s not going to be cured." Our lives have changed drastically since Katie's diagnosis. While she is on chemo, we can no longer plan anything for the future like a vacation, a trip to the zoo, the movies or even dinner out. Most parents can let their kids play freely with other kids or put them in preschool. We can't do that with Katie because we have to be careful she doesn't get sick. And, when she is around other kids, I'm hovering over her with the sanitizing gel. When we are all out somewhere, as soon as we hear someone cough or sneeze, we panic. We've all become VERY germ phobic!!! Every three months, when Katie gets the spinal tap and MTX chemo in her spine, she vomits and feels nauseated for days after. Every 28 days, she is given IV VCR which causes her pain in her back and joints for around five days. The DEX makes Katie's face and belly swell and causes extreme mood swings for two weeks or so. She has no control over her emotions while the DEX is in her system. Katie looks and acts "normal" for only 10 or so days each month. It's a roller coaster ride that is going to last for over two years. We don't know what the future holds for Katie. Her chemo treatments are supposed to end in February 2005, and it's scary to think of her going off the meds. Our trips to the clinic don't end when the chemo does. There is a post-treatment program in which Katie goes for monthly CBCs. Then there is a survivorship program after that. John and I won't be able to relax until we hear the word "CURED". We also have Katie's osteoporosis to deal with, and we don't know what damage the years of chemo will do to her. No one can predict how each child will do. We have been told the children are very resilient. We can only take one day at a time, focus on getting to her next appointment, and hope that Katie sails through this ordeal without any complications. We feel very fortunate to be able to share Katie's experiences with all of you. Your understanding and caring has helped us through difficult times. Thank you for your continuing prayers for Katie. Here is a run-down of Katie's ANC and meds since the last update. December 9, 2003: ANC 2400, full strength meds (1/2 tablet 6MP for 1 night and 1 tablet 6MP for 6 nights, 5 tablets MTX weekly, Bactrim 2 times per day for 2 days), 1 Tums daily. Return for CBC 2 weeks. December 23, 2003: ANC 572, hold all meds one week. Return for CBC 1 week. December 30, 2003: ANC 252, hold all meds one week. Return for CBC 1 week. January 6, 2004: ANC 1560, IV push VCR, 2mg DEX 2x/day/5 days, restart meds at half strength (1/2 tablet 6MP for 7 nights, 3 tablets MTX weekly, Bactrim 2 times per day for 2 days), 1 Tums daily. Return for CBC 1 week. January 13, 2004: ANC 5236, increase meds to 75% strength (1/2 tablet 6MP for 4 nights and 1 tab for 3 nights, 4 tablets MTX weekly, Bactrim 2 times per day for 2 days), 1 Tums daily. Return for CBC 1 week. January 20, 2004: ANC 1976, increase meds to full strength (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 1 week. IV VCR, LP and IT MTX in 2 weeks at CHOP. |
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