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Everything was going along fine for the first few days after the surgery. The tumor was being analyzed and Michael started the long healing process. The results of the tumor came back inconclusive and it was sent to the University of Minnesota to see if they could analyze it. The results came back on a Thursday, probably the ninth of July.
Tony and Lisa both came over to the house, they wanted to talk to us in person and it was one of the rare times when there was not at least one of them with Michael. They told us that Michael had what is called a Rhabdoid Tumor of the brain. It is very rare which is why it took so long to analyze. It is a cancerous tumor with a very low survival rate. To he honest, even after talking with the doctors, I'm not sure if there are any children that have truly survived. They seem to be reluctant to tell us, or they just don't know. The following is a transcript of the conversation between the doctors and Tony and Lisa as they explain the tumor and what will happen next. There are some other things going on during this time and I will try to back track a little later.
CHILDREN'S HOSPITALS & CLINICS - MINNEAPOLIS
PATIENT CARE CONFERENCE
7/9/98
PRESENT: Parents Lisa & Tony, Anne Bendel, MD; Oncologist, Dawn Matias, PNP; Casey Hook, Clinical Nurse Specialist; and Theresa Huntley, Social Worker.
Dr. Bendel explained that Michael has been diagnosed with a rhabdoid tumor of the brain. It is also called an atypical teratoid tumor. This type of tumor is found only on children; it is a rare tumor. Tony, Michael's Dad, asked how rare is this. Dr. Bendel will find further statistics and give that information to the parents. Dr. Bendel explained that this type of tumor can be found in other parts of the body, such as the kidney or liver, but it is a childhood tumor, and it occurs more frequently in younger children. It can grow and spread to other areas of the body, so we will be needing to evaluate that in Michael. We will be doing scans next week to evaluate this. She did note that we had a good resection, or removal of the tumor. She was pleased with this. Next week, we will check for spread to the spinal cord with an MRI, and check for cancer cells in the spinal fluid by doing a spinal tap. We will also to a CT scan of the chest and abdomen to look for any spread to other organs.
After the evaluation, she will decide what type of chemotherapy is best indicated. She says that the chemotherapy will be intensive. By this, she means that Michael will be inpatient for three to five days for chemotherapy, and this will be given every three weeks. Dr. Bendel explained that chemotherapy kills fast growing cells which are cancer cells, but also healthy blood cells, bone marrow, the lining of the mouth and GI tract, and hair. During the three weeks between cycles of chemotherapy, the body will recover from the chemotherapy and the blood counts should recover. Michael may need transfusions during this time, and he may have to come back to the hospital if he has a fever when his white blood count is low. This is because he may have an infection that needs to be treated. This aggressive chemotherapy means that he will spend more time in the hospital. Aggressive chemotherapy which uses multiple types of chemotherapy drugs, is most effective in killing the cancer cells. It is a bit hard on patient's, but it has proven to be the most effective in pediatric cancers.
Dr. Bendel does not recommend radiation therapy at this point. This is because of Michael's age. Our main modes of treatment have been surgery, which is already done, following up with aggressive chemotherapy. Radiation therapy that is effective with patient's, but the dose needed in his type of cancer would effect his developing brain. This would effect his intelligence in the future. We may consider it later when he is older, if it is needed; it would be needed later if the tumor grew back, but we would talk about it at that point.
Dr. Bendel explained that we are members of a cooperative group for treating children with cancer. The name of this group is The Children's Cancer Group. We collaborate with oncologists all over the country, and do research and share information. Dr. Bendel will be checking with this group on treatment protocols that might be helpful in treating Michael's tumor.
To get ready to give Michael chemotherapy, we will need to place a central line called a Hickman Catheter. This will be used for giving IV chemotherapy, for drawing labs and giving blood transfusions. After this is placed, it will be helpful in that we will not have to poke Michael for doing these treatments.
Dr. Bendel also recommended placing a gastrostomy feeding tube. This allows us to give good nutrition which is important for his strength and development. We have found that children who have good nutrition, have a better sense of wellbeing as well.
We will probably do scans early next week, and then do the surgery for the Hickman catheter and gastrostomy tube later in the week. Dr. Bendel will be talking with Dr. Nagib about the gastrostomy tube as well.
The Chemotherapy treatment will be started after those things are completed. She will talk with the family further about the exact type of chemotherapy next week. Chemotherapy will probably be at least for a year. We will also be working on Michael's rehab and we will talk with Child Life about helping the family and Michael's sister, Anna's adjustment. The group discussed Michael's rehab and the fact that he was advanced in his motor skills before becoming ill. We will work with rehab on ways to help his recovery in his motor skills, and involve the family in that.
Casey Hook, RN,MS
Recorder
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