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This is the story of Arianna and her tumor called
hepatoblastoma, one of the several rare chilhood cancers.
Arianna is my daughter, 4yrs old, the second one my wife and I had after our wedding in 1987. The first one has born in 1992 and her name is Alessia.
Arianna begun to feel worse in april 2000, when during a weekend at Nice,
French, throwed up some times and complained with her mother Sandra for belly
ache. The weekend after, while spending some warm days with her grandmother in Castiglioncello
(Tuscania) by the sea, she had diarrea and a little fever.
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So brought back home (350 km) her pediatrist advised to go to hospital for
examination. She found a hard liver and the whole belly was not handly
treatable.
I was working and my wife went all alone. The first thing they did was an echography, where a big mass was evaluated as a possible tumor of not more precise origin.
The day after followed a TC scan and a probable neuroblastoma diagnosis. Few days later a biopsy and a 75.000 AFP (alphafetoprotein) level certified a IV stage hepatoblastoma with both lungs and peritoneum methastasis . "Among the worst, hepatoblastoma is better than neuro one" told us the chief physician out of operating-room. A port-a-cath was planted into Arianna's chest. Surgery was considered impossible at that moment.
One week later she begun the "Siopel 3", a european protocol of 10 cycles of cisplatinum alternate to carboplatinum+adriamicyn. Just to reduce the tumor, a ball of about 4 inches squares! This was 10th of June 2000. AFP before treatment reached 89.000.
After the first 4 cycle, Arianna still had her hairs, no aplasia delaying treatment, only a pair of plaques and blood cells transfusions. She looked great, was happy and energetic all day long.
The TC scans showed a significan reduction of tumor size, the almost total disappearing of lungs methastasis and a probable surgery possibility, especially after the next 3 cycles. After those, AFP was 900 and the surgery window was opened. The 25th of October we flew to Brussels where Prof. Otte, after an echography excluding transplant necessity, operated her the 27th in 4 hours, resecting all the cancer, 2/3 of her liver and the omentum. AFP fell down to 109. Before leaving St. Luc Hospital we said hallo to the surgeons: "See you" my wife saidand Prof. Otte answered "I don't think we'll see you again, good luck".
November and December were spent giving to Arianna the last 3 cycles of protocol. In January, with 2,5 AFP, TC scans revealed no signs of patology. But one month later AFP roze to 3.5, than 6 in March and 14 in April. A new TC scan was scheduled. A relapse in one lung was shown and 2 new cycles of carboplatinum and VP16 given from May to the end of June. I don't explain the aplasia that brought her twice in hospital for high temperature and an intestinal blocking occured, because who is unfortunately familiar with these kind of patologies understand that this is the side of the illness you accept as a path toword remission and consider them the minor problem.
A PET scan after the first cycle showed already no signs. After the second one, end of June, also TC was negative. But AFP after a smooth drop to 13, roze again to 14. So two more chemo of the same medicine were instructed, under oncologists advise. End of July, third cycle, 18. Then 34 and 39 before the beginning of the fourth chemo.
Once again Arianna fell in aplasia after 10 days from the end of the treatment; three days isolated and then a prompt recovery and the going back home.
September 11th: the day of the "one more time a TC scan". Negative! So the question was: what do we do?
AFP 39 is a sure sign of minimal tumor activity. These were the options:
1 - to give her only VP16 oral, monitoring AFP and waiting for tumor show up
2 - to give her a massive chemioterapy clinical trial
3 - to transplant her own staminal cells after a massive chemioterapy of already effecting medicines.
We travelled to Padova to meet Dr. Perilongo, the european patology coordinator, just to hear that despite Arianna's today good conditions, her expectation of life are very poor. What the tumor did so far has been very bad: IV stadium at diagnosis with lung and peritoneal methastasis, reoccuring once in April, no significant reduced AFP after 4 new cycles, but a rising level.
So, after several advises (some coming from the States, like Dr. Malogolowkin one), we decided to wait until the cancer will show up again and then as "hepatoblastoma is a surgical tumor" to resect it, if possible. Otherway, to try with medicine and hope.
But the time of new AFP data came and…. unbelievebly it has been 9! Nine means normal for USA and French, as Dr. Sommacale gently informed us. Only in Italy we indicate "under 6" as a regular level.
Waiting is always the way of life we adopted in these last weeks and it will probably continue to be, but we have now a little bit more hopes for Arianna, so strong and active, the "Arianna's hope".
We want to send a particular "thank you" to all the doctors who are taking care of her in these 18 months. I'm sorry if I don't remember some of them, but the ones I mention are truly somebody for my wife and I, but especially for Arianna.
Dr. Costantini and Dr. Maiullari (Surgery OIRM Turin) for their human touch
Prof. Madon, Dr. Brach del Prever, Dr. Bianchi, Dr. Luzzatto, Dr. Conti, Dr. Sandri, Dr. Angelini (Oncolgy OIRM Turin) the managers of our fight.
Prof. Otte (Clinic St.Luc - Louvain Brussels) and Dr. Gennari (Hepatic Transplant Molinette Hospital Turin) the Arianna's hepatic surgeons.
Dr. Massucco, Dr. Rossi, Dr. Capello, Dr. Regge, Dr. Sommacale, Dr. Dioguardi, Dr. Malogolowkin for their friendship, advises and authoritative
judgement.
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