WEDNESDAY, NOVEMBER 10, 2007
Posted on November 10, 2007
My Doctor said it was OK to stop taking 3 of my other meds. Some were 3 times a day, so that’s a relief! I still have 2 other ones to take and my monthly IV med until I see my transplant Doctor in Jacksonville in December. I’m so excited to see my nurses, Doctors, and friends again. This time I’m going to show them how a princess shakes her booty and sings.
I’m also going to visit my Aunt Valerie, Uncle John, & cousin Michael in Fort Benning. Michael is exactly 2 months younger than me, and it’s going to be so fun to play with him, and I can’t wait to show them my new eating habits. I have gained some weight back and I have so much energy. I can’t seem to take naps sometimes and I can keep my Mommy up until 1-2am. Mommy has been teaching me and my brother Jacob during the day about shapes, spelling, colors, ABC’s, memory games, and numbers. Sometimes I have to tell Mommy the answers because she forgets.
We’ll have to run and watch the movie Ratatouille..I love that rat! It’s our Sunday family day and we all sit and relax with our cups and snacks and hang out and watch a movie. Then we go to the park, play baseball, run around, and enjoy our family time. Oh! Don’t forget to check out my new web page caringforcatie.com. It’s still being worked on a little but it’s almost done. Hugs N Kisses
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THURSDAY, SEPTEMBER 20, 2007 08:54 AM
Posted on September 20, 2007
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Hi everyone! I got that Broviac out finally. My plateletes were a little low, so we had to wait for a transfusion, and then had the broviac removal. I am taking a pill form of medicine called Accutane. I take one 40mg in the morning, and two at night, 140mg plus a 10mg. There’s a lot of mild and serious side effects, and so far I only get moderate mood swings that come and go very quickly. I also have chapped skin too. So this new treatment plan is 14 days on and 14 days off for the next 6 months! I’m being such a big girl and swallowing my big gel pills though. I still have to do clinicals 3 times a week with Daddy and Mommy.
All of my scans came out negative, but the MRI still showed that 2% of that tumor was still there behind my eye. The MIBG scan didn’t light up, which means it’s dead, for now, and it better stay that way! They’ll still have to scan me every 3 months for the next year, which is what they do after transplant. I am now on Day +80, 20 more to go, and then I’ll be able to get off some medications like antifungal, Amox, Acyclevar, Penzole (I’m sure I spelled those wrong). The WINK News came to my house and are going to do a story on me that will air next week. So get your TV’s ready and watch me become famous! Please remember to pray for me and my family. We’ve been through so much in such a short time. All we want to do is be together and watch each other grow up. See you on TV!!! |
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THURSDAY, AUGUST 30, 2007 10:35 PM
Posted on August 30, 2007
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The Doctor was so happy to send me home this fast! They were happy with all my levels and felt comfortable enough to send me home early. Now I can do my radiation at home, yeah!!
I’ve been home about a month now, and Mommy and Daddy have been really busy taking me to my clinical appointments to make sure my blood levels are doing good. I haven’t needed any transfusions yet. My levels keep going up and down every now and then and I need my shot to boost my system. I’m so happy to see my room again. I missed my sisters and brother. Everything at home is so clean to prevent me from getting sick. I can’t be around dust, pollen, mold, and most of all I have to keep wearing my mask outside until I am post transplant which will be in a couple more months. We had to see the eye Doctor before I started my radiation. I got 12 rounds of radiation that my Mom and Dad took me to every morning. I couldn’t have anything to eat or drink after midnight. We I got there, they played with me until they were ready to take me back. Then I’d fall asleep and woke up when it was all over. They have been radiating my face with 12 beams. They had to get behind my eye where the cancer was to attack it even more so it won’t grow back. I still have a 50% chance that this cancer will come back within a year. They also radiated my abdomen where the tumor was on top of my left kidney. The only side effect will most likey be cataracts, which future surgery could fix. 8/30 Today was my last dose of radiation, YEAH! I get to sleep in tomorrow! The Doctor went over paperwork with my Daddy and Mommy to go under a new study for the next 6 months. They have to start out with more shots, more meds, and a new treatment plan. I will be in the hospital again…A LOT!!! Sometimes, I’ll even have to stay for 2 weeks straight. I hope it doesn’t make me to sick to dance and have a tea party with my friends on the unit. All I’ll have to do is push the red button and they’ll come and play with me. We have a couple more clinicals and all my scans to do next week, remove my broviac, and then we wait for a date to start my new treatments. Meanwhile, I’m going to play with my family every day and dance! |
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MONDAY, JULY 23, 2007 12:17 PM
Posted on July 23, 2007
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+ 14 FRIDAY 7/13/07 MY ANC LEVEL WAS 2300 AND WE LEFT HOSPITAL!!!!MY ANC WENT DOWN A LITTLE BECAUSE THEY HELD BACK ON THE NEUPOGIN BUT THEY GAVE ME A DOSE BEFORE BEING DISCHARGED.
ALL OF MY MEDS WERE GATHERED UP AND MOMMY AND DADDY RECEIVED OUR NEW LIST AND PROCEDURES OF THINGS THAT NEED TO BE DONE. DADDY FINISHED CLEANING THE RONALD MCDONALD ROOM AND MOMMY AND I CLEANED UP THE ROOM AT WOLFSONS CHILDREN’S HOSPITAL. EVERYTHING WAS TAKEN OFF THE WALLS SO THEY COULD BE PUT UP IN MY OTHER ROOM. I ATE 1/2 OF A WAFFLE TODAY BUT I STILL DON’T WANT ANYTHING ELSE RIGHT NOW, NOT EVEN MY CUP. WE HAD NUTRITION BAGS, FLUSHES AND A HOME MONITOR DELIVERED. IT IS PROGRAMMED JUST FOR ME TO GET A 16 HOUR NUTRITION DRIP AT NIGHT AND THROUGH THE MORNING. THE HOME HEALTH NURSE ARRIVES AT NIGHT AND THEN COMES BACK THE NEXT DAY TO TEACH EVERYONE HOW TO MIX UP THE LIQUIDS, HOOK UP MY LINES AND THEN FLUSH EACH OF THEM. IT’S PRETTY SCARY. EVERYTHING IS SO DIFFERENT. IT WOULD BE ALOT EASIER IF THE HOSPITAL WOULD RENT OUT A POLE OR SOMETHING AND A DRIP MACHINE. THE NEW ONE IS NOTHING LIKE THE ONES WE HAD BEFORE. AND THE NUTRIAN NUTRITION BAG IS JUST FLUIDS. MOMMY HAS TO DRAW 2 VILES (DIFFERENT MLS) FOR EACH AND PUT IT IN THE BAG AND MIX THE FATS INTO THE BAG AS WELL. THEN HOOK THE LINE TO THE BAG AND THE MACHINE, CHECK THE BLOOD RETURN IN MY BROVIAC AND ATTACH THE LINE. IT HAS TO BE WATCHED VERY CLOSELY FOR ANY AIR BUBBLES FOR THE FIRST 45 MINUTES UNTIL THE MACHINE RUNS FASTER AND CONTROLS IT ALL. ALCOHOL HAS TO BE WIPED ON PRETTY MUCH EVERYTHING AND THEN WE HAVE TO FIND WHERE AND HOW TO HANG THE BAG. WE WERE SO HAPPY TO GET OUT OF THE HOSPITAL BUT ARE OVERWHELMED WITH EVERYTHING THAT IS NEW TO US. HAVING A FRIDGE IN THE BEDROOM FOR THE ORAL MEDS AND A FRIDGE IN THE BATHROOM FOR MY BAGS AND VIALS REALLY HELPS. MONDAY 7/16/07 DAY + 17 WE HAD AN APPOINTMENT THIS MORNING TO DO BLOOD WORK AND MY PLATELETS WERE 80 AND I DIDN’T NEED ANY BLOOD TODAY. EVERYTHING LOOKS REALLY GOOD SO FAR AND TOMORROW WE MEET WITH THE DOCTOR AND NUTRITIONIST, AND DO MORE LAB WORK. TONIGHT I GET MY NEUPOGIN TO HELP KEEP MY LEVELS GO UP. I HAVE BEEN DOING REALLY WELL SO FAR AND GRANDMA BROUGHT MY BROTHER AND ONE OF MY SISTERS UP FOR A VISIT. I AM STARTING TO DRINK FROM A REGULAR CUP AGAIN. I THINK MY GUMS ARE TENDER AND THAT’S WHY I’M HAVING TROUBLE EATING AND DRINKING FROM MY SIPPY CUP. I HAVE BEEN REALLY GOOD ABOUT WEARING MY MASK WHEN I GO OUT OF THE ROOM. I DON’T HAVE ANYMORE MUCUS COMMING UP AND MY POOPIES ARE NOT SO RUNNY. I AM JUST HAPPY RIGHT NOW AND RUNNING AROUND AND GOING POTTY LIKE A BIG GIRL. I LOVE TO PICK OUT MY CLOTHES AND SHOES TO GO OUT. THEN WHEN WE COME BACK I HAVE TO CHANGE MY CLOTHES AGAIN. WE ARE TRYING TO KEEP EVERTHING AS SANITARY AS POSSIBLE TO MAKE SURE WE DONT BRING BAD GERMS INTO OUR SAFE AREA (HEPA FILTERED ROOM). XOXO |
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WEDNESDAY, JULY 11, 2007 01:32 PM
Posted on July 11, 2007
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Last week I had some fevers but got them under control with Tylenol. My cheeks were swollen and I had mouth sores and lots of mucus. I was afraid to either swallow or spit it out, my mouth was hurting so much. I had three blood transfusions and two rounds of platelets to help get me better. I had morphine for the pain and to help me sleep. They gave me extra nutrition because I couldn’t eat or drink anything for several days. I played with stickers and painted a little and watched movies. I really like Happy Feet. I also have a Dora story book that reads to me.Sunday 7/8/07 Day +7 My ANC levels came up to 52.8 and I needed more blood and platelets. I am able to start talking a little but my voice sounds funny. Mommy says I’m a little horse, huh? The swelling is going down and I can have my mouth cleaned out but I don’t like it much. I get sick and throw up but it is good because I get a bunch of that icky mucus stuff out and then I feel much better. Then I get this pink numbing cream that helps my mouth sores and my throat when I swallow. They are giving me antibiotics, fluids, morphine drip, vomiting meds, and a nutrition drip. I developed a rash on my diaper area and under my arms and they tried a few medications to help. I’m afraid to eat because it hurts so I get to play with my food and do some finger painting with it. Everything still tastes yucky. I got to finally play on the floor. Everything has to be really clean all the time so I don’t get sick. I was woozy and wobbly and almost fell. I have to get my strength back and work on getting my muscles stronger. I’m afraid to get a bath because of all the tubes and lines coming out of me but Mommy and Daddy managed to do it somehow.
Monday 7/9/07 Day +8 I had a hard time sleeping but I think I don’t know when it’s daytime or nighttime right now. Today my ANC levels came up to 392 but we still have to wait for it to go up to at least 500 for three days before they will let me go out. I still have lots of mucus coming out and my eyes water and I can’t breathe when it happens. They did an x-ray to make sure my lungs are clear and my port and brovaic access are still in place. Tuesday 7/10/07 Day +9 My ANC levels came up to 1700!!!!!! They still have to remain up for three days before I can leave my room. More to come!!!! If you want to send any cards or gifts, it needs to be cleaned with alcohol and it will be cleaned again when we get it too. The address is: RONALD MCDONALD HOUSE, ROOM 7824 CHILDREN’S WAY, JACKSONVILLE, FLORIDA 32207 Keep those prayers and guestbook entries coming! I love to hear from you! XOXO |
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