Melanie was born on her due date (2/5/96) with no complications. She was rarely sick and even if she did get a slight cold or a fever it would only last less than a day. Her brother and sister had the ear infections, strep throat, etc. and she never did. I think she had only been on antibiotics once - and that was around age 3.
I gave birth to Benjamin on July 1, 2002. Melanie is usually the "little mother" and is thrilled to be around babies. I was a little puzzled that she wasn't as excited around him as I thought she'd be. Right around July 10 she developed a low-grade fever, but had no other symptoms other than being a little listless at times. On the 15th I took her in to the doctor because of the fever, but she was still showing no other symptoms, he said her glands felt a little swollen, but couldn't find anything else wrong with her. He said to give it a few more days and then he might test her for Mono. It was puzzling because she would have a slight fever, feel a little punky, and then feel fine again the next day and be acting completely normal. Took her in again on the 19th and the doctor thought he heard something in her chest so he ordered an x-ray to be done in their office. He said she had Pneumonia, and prescribed antibiotics. Her fever cleared up for a few days, but was back again early the next week. On the 24th the doctor called and said that the radiologist had been reviewing the film taken the week before, and saw something that he wanted clarification on so he wanted her to have a CT scan. That afternoon we went back to the doctor and had another x-ray and CBC done. The x-ray showed that the pneumonia had started to clear up, but there was still fluid in the lungs and this time a faint white mass was showing in the middle of her chest. I was starting to get concerned, but still thought it might have something to do with the pneumonia. Her CBC was pretty normal - her WBC was slightly elevated (I think around 16.5 or so) but they said that could be her fighting a virus. I specifically asked about leukemia, but was told her WBC was not in the danger range.
The next morning (the 25th) we went for the CT scan about 11:00. At noon I was making lunch and the phone rang. It was my doctor (he delivered two of my kids, and has been the doctor for all of us for the last 10 years so he knows us really well). He said that the radiologist had picked up on a large mass and wanted us to get it checked out. He said that he had contacted DeVos Children's Hospital (about 1-1/2 hours from us) and that we were to pack and go down there right away. He said they would be calling me within five minutes to give me directions. He then asked if I was ok, and I broke down crying and said that I was scared. He reassured me that most of the things it could be could be treated, and even thought that it may not have been anything serious. A female doctor from the Oncology Clinic called and gave me directions and then said "We'll take good care of your Melanie" in the sweetest voice. At that point "FEAR" entered my body and I knew that something was very wrong. We rushed around the house throwing things in a bag and made arrangements for Alex and Kristina to be taken care of, and for her dad and his girlfriend to go too. I was still nursing Benjamin, so he went too. We were down there by 3:00 and checked in through the Oncology Clinic. They started an IV, took some blood, and we gave our history and waited.
I think it was around 5:00 when an Oncologist came in and said the words that changed our lives forever: "It looks like she has Leukemia". They checked us in and started her on chemotherapy that night. The next morning she was scheduled for a femoral line, a bone marrow aspiration, and lumbar puncture. They couldn't put in her Broviac yet because of the mass in her chest (a mediastinal mass, caused by the leukemia cells). They told us that we would know what kind it was by 3:00 the next afternoon. I knew there was a "good kind" and a "bad kind", one with around 80% cure rate (ALL) and one with only about a 40% cure rate (AML). Those 22 hours were the longest in my entire life. I couldn't eat, I couldn't sleep. I had to be strong for Melanie, still take care of Benjamin, make arrangements to be down there for at least a week, maybe a month. It was a very bad night.
The next day we assembled for a family conference consisting of me (Melanie's mom), Rick (her step-dad), Bill (her father), Tina (Bill's girlfriend), the Oncologist, the Social Worker, and a nurse. We had to walk together to a conference room three floors up and while I probably looked fairly calm on the outside I just wanted to scream at the doctor to tell me if it was ALL or AML. We sat down and he organized his notes and then I'll still remember his words, and a great weight lifted: "Melanie has Acute Lymphoblastic Leukemia". As soon as he started saying Lymphoblastic I remember feeling so relieved. Isn't that horrible? Your child has a horrible life-threatening disease and I was relieved. But as other people have said, it was the lesser of two evils. At that point I started to feel a little better because we knew what it was and we could fight it. Some people just lose their children suddenly or to a much worse disease, so at least we have something to fight against. I am also VERY thankful that we caught it so early. From the first doctor appointment to diagnosis was only 10 days. I credit the radiologist at our local hospital for picking up on the mass before it really started causing breathing trouble.
Melanie had t-cell ALL (which typically does present with a mediastinal mass). She was labeled a "rapid early responder" by going into remission by day 7, and the chemo made the tumor shrink by then also. She was put on CCG-1991 protocol, which is for standard risk ALL (t-cell kids are no longer placed on any standard risk protocol- she was among the last to be labeled 'standard risk'). Her WBC was 23.6 at diagnosis, and her other counts were good. She was only in the hospital for a week, and the day we were discharged they were able to put her Broviac in.
She did great during treatment, only needing one hospitalization after dx (for shingles during LTM), and never needed any transfusions. Melanie is now almost 17 months off-treatment and doing great! Life really has returned to normal for us, and while I still worry a little about the chance of relapse, it's not all consuming anymore.
Kathi mom to Melanie (10), dx t-cell ALL 7/25/02, CCG-1991, OT 9/20/04. also mom to Alex (12), Kristina (7.5), and Benjamin (3.5) and wife to Rick. www.caringbridge.org/mi/melanie