RockingJuJu

Jacey was admitted to Akron Childrens Hospital on December 25, 2005. She was diagnosed with an adult form of Leukemia called Acute Myelomonocytic Leukemia (AML-M4). Jacey was 9 years old at the time of diagnosis.

Jacey began to get ill on December 22, 2005. It just seemed like a cold. She became more ill with each passing day. By Christmas Eve she had what we thought was the Flu. Her symptoms were nothing alarming. Fever, chills, congestion, fatigue, stomach pain and vomiting. Christmas morning came and Jacey had no interest in opening any of her presents. She sat watching everyone else and just looked like she felt horrible. I got down in the floor with her and noticed that she had a very small rash on her face and neck. I asked my Aunt to take a look at them as I had never seen such a rash. She said it might be measles. I took Jacey in the other room to check to see if she had the rash anywhere else. I was looking in the warm spots like under her arms. I saw nothing there. When I went to pull her shirt back down I could hardly believe my eyes. Jacey had this rash all over her stomach.

Her dad and I decided we would take her to our local immediate care center. We though they would just tell us to give her plenty of fluids and rest and wait for it to pass. The doctor took on look at the rash and said it was not measles and that we would have to take her to the emergency room. What she had was a petechial rash. This meant there was something wrong with her blood. Once we arrived at the E.R. they took her blood and sent her off for an x-ray to check for pneumonia. When the blood came back her white count was 158,000. Normal white counts is not over 13,000. This was a sign that she may have leukemia but the assured us it could be something else. They said she would have to be transferred to our local children's hospital.

When she arrived there was a whole team of doctors waiting for her in the ICU. They told us there was no question it was leukemia. Jacey was sent off for a CT Scan and a bunch of other test. I was confused why she was being admitted to the ICU. They told us Jacey was very sick and it was possible for her to have a stroke or bleed out at any moment. She needed very intense care. I was in total shock that Jacey was now facing a life or death situation. How could this be happening, she only had the flu!

By the next morning her white count had risen to 288,000. They would not be able to treat the leukemia with her counts that high. She had to be placed on dialysis machine so the could filter her blood to try to remove some of the bad cells. They ran her blood through the machine twice and it took 8 hours to complete. They were able to get her white count down to 88,000.

Her white count had risen back up to 135,000 before they were able to start the chemo. Chemo was started on December 27, 2005. Jacey had not eaten since December 24th. They were not allowing her to eat once she had been admitted because she needed to get into surgery to have a spinal tap done to check her fluids for leukemia and needed to have a broviac placed for her chemo treatments. She was still to unstable to put her under until December 29th. Her spinal fluids came back normal! They finally allowed her to eat and she ordered everything on the menu. She took about 3 bites and was full.

She was in the hospital for 44 days for her 1st round and had a few infections. She also developed a respiratory problem that was able to be controlled. She was able to come home for 9 days before she had to return for another round of Chemo.

During her 2nd round of Chemo she developed the same respiratory problem. The problem was much worse this time. They preformed a bronchoscopy to try to find out what was going on with her lungs. She was unable to be extubated after her bronchoscopy and was placed back in the ICU. Not long after she had acute kidney failure and had to be placed on CVVH dialysis. She spent 4 weeks in the PICU.

It was apparent that the chemo drug called Ara-C might be damaging her lungs. It did not seem like a good idea to continue with the next round of chemo. The next round would be much larger doses of the Ara-C. They had never had a child just stop treatment. We talked with 2 doctors that both had very different opinions on what would be best for Jacey. We decided to stop treatment and wait and see if the monster came back. They told us that the odds were against her. She was facing an 80-90% chance of relapse.

Jacey was discharged from the hospital at the end of April 2006. She was very weak and unable to walk or stand on her own. She began to grow stronger and went back in the hospital for what was supposed to be a one night stay. She was going to have her broviac removed and have a medi-port put in. This would allow her to be able to swim and bath but still allow them access to draw her blood and receive blood products as needed. In the recovery room Jacey stared having seizures. I stood there and watch her heart rate drop. I thought after all she had been through this was going to be it. They had to place her back on the ventilator and back to ICU she went. Jacey fought her way back to us and she was released after only 2 more days.

Jacey had her medi-port removed on July 12, 2006.

She is a very tough little girl and I truly believe that her strong will has gotten her this far.

To read Jacey's complete journal history please visit

www.caringbridge.org/visit/jaceykleiner

HER UP COMING TREATMENT PLAN

We have been very lucky that she has not had any permanent damage to any of her major organs. She has however had some permanent vision loss in her right eye due to a fungal infection that she had during treatment. They are keeping a watch on it be make sure that it is not growing. No growth means that it is not a tumor. This blind spot is not able to be corrected but Jacey adapts to it. The blind spot is almost directly in the center of her vision. The vision loss however will not prevent her from leading a "normal" life. She also has a spot on her arm that developed right after chemo stopped. The spot could be cancer and they only way to tell at this point is to have it removed. Jacey is not thrilled about it but we feel that it is our best option. Jacey is scheduled to have surgery on December 26, 2007 to have the spot removed.

Jacey did have the spot removed and all is well for now with that. Since then she was diagnosed with a PFO in her heart. This is a small hole between the right and left side of your heart that allows blood to flow in the wrong direction. The doctor feels that at this time it is not something that they should try to correct but something that will need to be addressed later in life.

We have all certainly been thankful for the thoughtfulness and kindness from everyone around us.

The Facts

Cancer in children and adolescents is rare. Children and adolescents with cancer should be referred to medical centers that have a multidisciplinary team of cancer specialists with experience treating the cancers that occur during childhood and adolescence.

Children with newly diagnosed AML have an event-free 5-year survival rate of approximately 50%. The most consistent prognostic factor across studies of AML in children is white blood cell (WBC) count at diagnosis. Children who have a WBC count greater than 100,000 per cubic milliliter have a poor prognosis.

Approximately 40% of children with AML have M4 or M5 subtypes

Because of the intensity of therapy utilized to treat children with AML, children with this disease must have their care coordinated by specialists in pediatric oncology, and they must be treated in cancer centers or hospitals with the necessary supportive care facilities (e.g., to administer irradiated, filtered, or cytomegalovirus-negative red blood cell and platelet transfusions; to manage infectious complications; and to provide emotional and developmental support). With increasing rates of survival for children treated for AML comes an increased awareness of long-term sequelae of various treatments. For children who receive intensive chemotherapy, including anthracyclines, continued monitoring of cardiac function is critical. Periodic renal and auditory examinations are also suggested. In addition, total-body irradiation before bone marrow transplant increases the risk for growth failure, gonadal and thyroid dysfunction, and cataract formation.

A major challenge in the treatment of children with acute myeloid leukemia (AML) is to prolong the duration of the initial remission with additional chemotherapy or bone marrow transplantation (BMT). In practice, most patients are treated with intensive chemotherapy after remission is achieved, as only a small subset have a matched-family donor.

Jacey's Song of Love