History of Initial Diagnosis

On July 27, 1999 Madison Farhat-Tomaszewski was diagnosed with a childhood liver cancer called Hepatoblastoma – Stage IV. Hepato means liver; ‘blast’ means embryonic cell; and ‘oma’ means tumor. Stage IV means it has spread to other parts of the body. In Madison’s case the inferior vena cava (IVC – a main vein from the liver to the heart), the right atrium of the heart and the lungs have been impacted by the cancer. Because of this wide spread impact it is considered Stage IV (the highest classification in cancer terms - - e.g. Stage I - means the cancer is confined to the primary site, the liver, and has not spread to any other organ.)

Madison was ill with various upper respiratory infections throughout much of last winter and into the spring of 1999. She had been treated in early May for supposed "pneumonia" with two rounds of antibiotics. Then on Tues., July 13, 1999, Madison awoke with fever, very shallow breathing and complained that her "side hurted". After a trip to the ER, a chest x-ray and radiologist revealed "probable pneumonia". Again we tried antibiotics--2 courses—to no avail. Soon, Kathy and Steve realized that Madison was indeed, getting worse instead of better. During the week of July 19, 1999 Madison’s previous symptoms increased ten-fold. In addition to the fever, shallow breathing and abdominal pain, she also became very withdrawn, lethargic, dehydrated, had a distended tummy, and had very decreased appetite. Previously we had been told by our former pediatrician that her symptoms were not uncommon with pneumonia. The other symptoms we identified were down played by our pediatrician. However, under pure frustration we brought Madison into the "Pediatric After Hours Clinic" on Sunday July 25, 1999 for another opinion. Immediately they identified her very enlarged liver in addition to "pleural effusion" (liquid trapped on the outside of the lung – compressing against it and only allowing her rapid / short breaths). Madison was admitted into the hospital immediately. On Mon., July 26, a pleurocentesis procedure was performed (insertion of a hollow needle into the pleural cavity--space between the chest and lungs-- through the chest wall in order to withdraw fluid, blood, pus or air). A significant amount of yellowish fluid was withdrawn from her chest giving her temporary relief so she could breath at a much more normal rate. She was also catheterized and began an IV. Perhaps the most important piece of information obtained on 7-26-99 were the results of Madison’s bloodwork—which showed her to be anemic with a hemoglobin of 7.6 g/Dl. This prompted additional bloodwork to find the cause of anemia and low hemoglobin count.

Madison was transferred to the Pediatric Intensive Care Unit (PICU) so she could be more closely monitored. Madison was then hooked up to monitors tracking her oxygen level, heart and breathing rate. She also had portable chest X-rays performed to identify or better diagnose her condition. Blood was withdrawn and labs sent out to understand the chemistry behind her weakened status. However, throughout the day Madison’s breathing rate and oxygen levels started to diminish. She then needed an oxygen mask to help supplement her intake and ensure her body received enough to keep her alive. During the late hours of July 26 and early hours of July 27 Madison’s breathing rate was putting her into a more critical category. It was decided that the rate of fluid generation (‘pleural effusion’) was out-matching her ability to remove fluid normally and that the insertion of a chest tube would be necessary. The tube would then allow drainage of the fluid in the outer chest cavity and remove the pressure from her lungs, thus allowing her to breathe better. This was performed in the early hours of Tuesday, July 27. See the figure below.

After the chest tube Madison improved slightly, however, she was still required to be on oxygen and under constant care. Around 10 am on July 27, 1999 Madison was taken to have a CT scan of her chest and abdomen area. Madison was sedated for this procedure. Ironically, on the way down to the CT room the first hint of CANCER was mentioned – but in the pediatrician’s own words "it would be almost unlikely" – just a precautionary statement.

The afternoon of July 27, 1999 was when the world came crashing down on us. Approximately fifteen doctors including nursing staff and a psychologist came into Madison’s room to update us on the CT scans. Leading the discussion was the hospital’s primary oncologist, Dr. Kulkarni, who, in a very straightforward and compassionate manner, informed us that Madison had Hepatoblastoma – Stage IV. The CT Scans identified a very large tumor in the liver (see figure below) , a mass in the right atrium of the heart, approximately 6 to 12 tumors on each of the lungs and a tumor impacting the IVC. Additionally, an alpha fetoprotein (AFP) level came back very high. AFP is a protein that is elevated in the blood of children with liver cancer. In healthy children the AFP is below 10 ng/ml; however, in Madison’s case it was 832,240 ng/ml.

Madison was in Kathy’s arms and still lethargic from sedation. Obviously she couldn’t comprehend the verdict handed out to her. As her parents, nothing could’ve prepared us for this nightmare—we were numb, grief-stricken and terrified. We both prayed for the doctors to return to our room and say they made a mistake and misread the scans. We were in a haze – a fog.

That afternoon Madison was scheduled for emergency surgery to install her Broviac line. This line was inserted into the superior vena cava, which draws off the area around the heart and comes back out the chest. You will see this in her videos that are attached in the education section. This line replaces the IV and allows blood to be drawn from Madison without a needle. It also allows for the injection of chemo drugs and if necessary the site where Total Parental Nutrition (TPN – liquid nutrition / food) can be administered. That night Madison was given a cardiogram (an ultra sound of the heart) to obtain a baseline size of the right atrium tumor. Its longest dimension was 3.28 cm and thankfully was not impacting the valve function.

Madison spent a total of 21 days
(see chart below) in the PICU at the hospital, before being released to go home. She received her first full round of chemotherapy. The drugs that are used are: Ammifostine, Cisplatin w/mannitol, 5-FU (Flourouracil) and Vincristine. Her status improved but she was a bit weak from the toxicity of the chemo treatment.

The following chart shows Madison's overnight stays at the hospital. Click on the chart to enlarge it.

Slide1_102199.JPG (61533 bytes)

Final Note:

It is our belief that Madison’s former pediatrician missed many of the classic signs of Childhood Cancer (abdominal mass/distended tummy, constant infections, nausea or vomitting without nausea, constant tiredness and/or noticeable paleness, recurrent fevers of unknown origin… (See Education section for complete list) during the May--July timeframe, losing valuable ground in the fight against a rapidly spreading cancer that has metasticized throughout her body. As parents we feel that our identification of the symptoms listed above was taken lightly and completely overlooked by our former pediatrician. Educate yourself—and INSIST that your doctor perform bloodwork and any necessary x-rays/follow-up treatments to help determine your child’s ailment. DO NOT assume that all doctors properly examine their patients and know what the signs of childhood cancer are—even though it is THEIR JOB TO DO SO. Challenge your doctors, investigate on your own -- -- because YOU need to be your childs greatest advocate! PLEASE remember: Parents know their child better than ANY doctor. Make absolute certain you have a doctor who is willing to listen to YOU and take your concerns seriously. Your child’s life depends on it…