Carly was discharged from the hospital Sunday. X-rays of her abdomen showed a lot of gas, which was most likely causing her belly pain. Although she still wasn't feeling well we felt it was best if she came home. At least she would have her toys and her sister to motivate her to move around. It seems to have worked because tonight she was actually playing and laughing with me for the first time in over a week. It was good to hear her laughing again. When she gets on a roll her laugh is quite contagious, and had me in stitches.
Carly is still complaining of leg pain, which has been very concerning. Some of her chemo drugs can cause joint and muscle pain. She will have a follow up appointment with the neurosurgeon to discuss the findings from the MRI. My feeling is that we are going to have to wait until she is done with her chemo before this can be addressed.
Carly finished her 8th round of chemo this past Monday. She seemed to be handling it well until Henni called me at work Wednesday afternoon. Carly was running a fever and wasn’t feeling well at all. Henni called the Jimmy Fund Clinic, the nurse instructed Henni to bring Carly to the local ER and have the doctor contact the on call oncologist. It was important to get her evaluated immediately because a cancer patient’s temperature can quickly rise due to an infection.
I met Henni and Carly at the ER and her temperature had already risen another degree. She was now running a fever of 101.6. She was also exhibiting typical flu like symptoms, aches, pains, and chills. After blood was drawn and x-rays of her chest were completed Carly was given some Tylenol, fluids, and antibiotics. Four hours later her temperature started to come down. During the night she woke up and when I picked her up, I couldn’t believe how hot she felt. We gave her some more Tylenol and she went back to sleep.
The next morning Henni called Carly’s nurse at the clinic. Although her fever was coming down she wanted us to bring Carly in to be checked out. She was complaining that her belly and her legs hurt and we were concerned that she was constipated. After the doctors finished examining her they felt it was in her best interest to admit her, at least over night. On the way over the 7 West we stopped to have some more x-rays taken of Carly’s chest and abdomen. On 7 West she was given morphine and antibiotics.
On Friday Carly seemed to pick up a bit. Her fever was down and she would occasionally sit up for short periods of time. The doctor’s felt that most, if not all, of the belly pain was due to constipation. She eventually went to the bathroom, but her belly still hurt. I gave Henni a break and stayed with Carly Friday night. Throughout the night she would wake up crying that her legs or her belly hurt her. She would often ask for heating packs on her belly and legs and I lost track after 15 heating packs.
This morning, Saturday, around 7:30 she had an MRI of her spine to determine the cause of her frequent leg pain. Five minutes before the test was done Carly woke up screaming for her mommy. Henni had to go in to calm her down and she had to be given more sedatives to complete the tests. Later that morning, while still groggy from the sedatives, she was in intense pain. So much so that the doctors decided to give her more morphine. The problem with morphine is that it can complicate constipation, but Carly had to be made comfortable. The only thing that made her smile was a visit from big sister Kelcie.
At one point as I was rubbing her legs and holding a heating pad on her belly, she said that she couldn’t take it anymore. To hear this from my four-year-old daughter just broke my heart. After the morphine took affect she fell asleep and I laid down next to her. When she woke up she felt a little better and asked for something to eat. We are hoping that by tomorrow that she will feel better and possibly come home. It hasn’t been a very good week. Just one more round.
Roy and I brought Carly to the Jimmy Fund for her 8th round of Chemo today. However, due to her white blood cell count being to low she is unable to receive her chemo. We now have to go back in on Monday to recheck her blood to see if she’s ready then cross your fingers. If this rebound is as slow as the last one she probably won’t make it Monday either. Over the past week Carly really hasn’t been herself, she’s been complaining of a lot of leg pain at night and she’s been to tired to go to school! But she tries very hard not to give in and continues to be her jumpy little self. We’ll let everyone know how she makes out on Monday. Thanks again for everyone’s messages we love them!!!
Sorry for the late update but we have been very busy this month. Overall Carly is doing well after the last cycle. She did require a blood transfusion and was running a low grade fever for a few days but it never got any higher than 99.8. Sometimes cancer patients undergoing chemotherapy get what is called a neutropenic fever, which is caused by low blood count. We were very concerned that the fever would increase and that she would be hospitalized during Christmas. Thankfully that did not happen.
Just before Christmas we brought the girls to see their Vavo at her office at the Rhode Island State Treasures Office. The girls received many gifts and we had lunch with Vavo and her friends. They were very thoughtful and caring to our little Carly and Kelcie and we are grateful for the day they provided for the girls.
On Christmas day Carly’s fever went down and she started to feel better. Carly and Kelcie had a nice Christmas and we enjoyed the company of our family. The girls were surprised by a visit from Uncle John and Aunt Judy Lewis from Indiana and Uncle John , Aunt Laurie and Lia Wagner from St. Louis, MO. A friend of ours, Joe Kelly, who owns Eli’s Pizza in Attleboro, had a Carly Night, Friday the 27th. I had a bug and wasn’t able to attend but from what Henni told me it went well. A heart felt thanks to Joe and the employees at Eli’s Pizza.
Carly’s daily injections and twice weekly blood draws have stopped until the next cycle. It has become increasingly difficult and stressful for both Carly, the nurse, and to Henni and I. We have to hold her down because she repeatedly will touch the sterilized area or the nurse’s gloves, and the nurse has to start all over again. Of course she cries and gets quite angry with us for holding her legs and arms.
We hope all of you have had a nice holiday and we wish you a happy and healthy Happy New Year. God Bless.
