It’s been a week of up’s and down’s for Carly. First we ran out of EMLA cream which is used to numb the skin before her GCSF shot and her port accessed for blood draw. We called to refill the prescription and found out that it had been pulled off the market because it did not have a childproof cap. We had to scramble around to find some, which we did, but not in time for her next injection and blood draw. We used ice to numb the skin and skin cream as a placebo. Neither one of these worked too well. The injection hurt quite a bit but the real discomfort was when her port was accessed. Although she didn’t have many more injections to go we couldn’t put her through that again, especially after all she has been through. Henni called the Jimmy Fund clinic and was able to “acquire” a few tubes to get her through the last few injections.
Other than the EMLA incident Carly has been doing well. At times she tells us her belly or her legs hurt. Her Neurontin was increased to hopefully cope with the leg pain. In the next couple of weeks she will be undergoing some tests including an echogram, MRI, and CAT scan.
This past Tuesday we were supposed to meet with Make-A-Wish but unfortunately this was postponed until next Thursday due to the snow storm. We’ll let everyone know how she makes out with her upcoming tests.
We’re happy to say that Carly had her last round of chemo on Monday and was discharged from Children’s hospital on Tuesday the 11th. It was a long week for Carly & Mommy but everyone kept reminding us it was her last chemo. I don’t think she fully got it at first but by the end of the week she knew this was big. On Tuesday the playroom lady, Lisa, had an “End of Chemo Party” for her. All her doctors and nurses came and we had cookies, soda, balloons and presents! Her primary nurse Vicky gave her a doctor Barbie, Polly Pockets and princess t-shirt for her & Kelcie. She also received a Barbie convertible from 7West and a puzzle from her nurse practitioner, Annette. Carly was in 7th heaven!! We took lots of pictures of her nurses and doctors and Carly had fun passing out little thank-you gifts to all her friends. There were lots of hugs and kisses and everyone said, “We love you but only come back to visit!”
We were extremely happy to receive the news from her doctors that Carly is officially in REMISSION!!!!!!! That was the best news Roy & I have heard in 9 months. They told us just because her Chemo has ended doesn’t mean she’s done with the Jimmy Fund. Our first obstacle is for Carly to recover from this round of Chemo. We’re scheduled to go back into the Jimmy Fund on Thursday the 20th for blood work because Dr.Goldberg has put Carly on a new medication called Neurontin to help with her leg pain. Also, her post MRI will be on March 1st. Carly eventually will have her port-a-cath removed but not until after all the tests are complete. They told us it will take at least 6 months before her counts really start to recover.
We will always live with the constant worry that it may come back but, with time this fear will recede and our lives will become more normal. When I look back to when Carly was first diagnosed I felt then, and I feel it now, all the love and support from our family and friends. And now that the chemo is over that door has shut…… another one has opened but this time I feel like there is no one behind it to watch her. No chemo! No radiation! Now more that ever we will need that love and support from all of you.
Carly, Kelcie, Roy and I want to express our deep heartfelt sympathy to the family of Amber Lea Bailey. Amber passed away after a long battle with AML. Twelve year old Amber was a lovely girl who made our Carly’s days brighter when she played with her.
Roy & I want to thank everyone for the countless messages and well wishes for Carly; you truly made the journey easier for us. We will still keep the web page going and let everyone know how Carly is doing. Again THANK YOU ALL!!!
All the preparations were made. Carly's LAST chemo treatment and we were more than ready for the end! Carly had attended school for a record three days, and now, all her toys, snacks, pillows, and pretty nighties were packed in her princess suitcase. Arrangements had been made for a little "thank you and goodbye" party to be held on 7 West at Children's. The night before we had a yummy dinner at Aunt Judy and Uncle Noel's house and then came home to a call from Dr. Goldberg postponing her treatment to allow a full three weeks to pass between her last chemo and this one. This was good news for MiMi and Kelcie who had colds and wouldn't be able to visit. If Carly's counts are okay she'll be going in on Thursday the 6th and will come home on Tuesday. We have a million questions for the doctors and nurses. Hopefully it will be her last hospital stay ever! The first leg of Carly's long journey to wellness will finally be over. Let the aftercare begin!!!!!
