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6:10 PM 12/23/96 FROM ANNA R. AND TONI F. Dear Mike, First of all, we really want to express our gratitude for your kindness and interest in giving us information about Retinoblastoma as well as in telling us the story of your own son. My name is Anna, I'm thirty-seven years old and I'm a clinic psychologist and psychotherapist. My husband's name is Toni - the same as your son -. He's thirty-eight and he's a high-school teacher. He teaches Catalan (the language which is speech in Catalonia) language and literature. We have two daughters: Laura, four years and a half, and Núria, born in October 22, 1995. We live in Barcelona (Spain); you must have heard of it as the Olympic Games seat in 1992. Our story about retinoblastoma begins in mid-august, when we were on summer holiday. In some special conditions of light, we could see a strange reflection in Nuria's pupil. We decided ask our pediatrist. She diagnosed leukocoria (cat's eye) and she told us to go to visit the ophthalmologist urgently. The day after, September the fourth, the ophthalmologist diagnosed retinoblastoma and send us to a Hospital. You can imagine how deeply painful was to find out that our little daughter had a malignant tumour and that she had definitely lost the vision in her right eye. We hadn't heard about this disease before. She was eleven months old. The first impression of the first doctor was very pessimistic, and since the very first time we had to make face to the possibility of eye nucleation and chemotherapy September the fifth, Núria came into a Hospital to be tested for the first time. The results were becoming encouraging: there was no metastasis and the left eye was free of any tumour... But her right eye had a big tumour which almost occupied the whole retina, so the vision was impossible to be recovered. We accepted the nucleation (done in September, 22). We must say that we decided to make it into effect because it seemed to be the more reasonable thing to do in our case: This eye had lost the vision and was unable to recover his functionality, and the probability of metastasis really would diminish. However, in our misfortune, we can consider ourselves to be somehow lucky: neither the optical nerve nor the choroid were affected by the disease. So, against the first impression, Núria doesn't need chemotherapy treatment and the disease prognostic is better. We would consider us lucky if the disease would never appear in the other eye. October the eighteenth, she has been put her provisional prosthesis. Now, she's free of the tumor, and she will have her examinations under anesthesia every three months to have the good eye under control. We have tried to fight against the traumatic effects of the stages into the hospital, the tests and the surgery. She has been to the Hospital just the unavoidable time (six nights). We have been enabled to stay with her 24 hours a day and to go with her everywhere... but the operating theatre. Nowadays, Núria is fine. She's a very healthful and vital baby. In one hand, we're happy for the good results, but on the other we're very sad because our daughter has lost one eye. We're also worried about how the disease can go on. Well, I'll explain no more details to not make a too long letter, but if you want to ask me anything I will very glad to answer. Finally, my husband and I, we want to express our gratitude again, and send you our best wishes for your son. Yours Anna Romagosa and Antoni Falcó OK TO PUBLISH |
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Another letter sent to me (I think it's a great addition) received: 8 February, 1997 Dear Mike: I write you because we have good news: Núria has passed her first EUA after surgery and she is fine. Also, I would like to offer some suggestions to attempt to reduce in the measure of what is possible the traumatic effects of the stays in the hospital, the tests and surgery. My husband and I think perhaps our experience and knowledge can be of usefulness for other parents. With this purpose, in spite of the fact that our English level is not very good, we will attempt to offer some little suggestions. If someone reads Spanish or Catalan, we could explain better all of this. (We also can read French and Italian). SOME BASIC IDEAS:- The little children can't speak, but can communicate us their experiences and feelings with non verbal communication. - They can notice all of their experiences, even the very young children. - The children need the continued contact with their parents, and this is yet more necessary in painful or difficult situations. When they are hospitalized is better to stay with them (rooming-in). - Psychological research has demonstrated the value of preparing children for health care experiences. For example, the surgical recovery is better if the children had some preparation to surgery. The child's level of development is also important in determining the level of understanding and coping mechanisms. - When the children is too young, it isn't possible understanding our explanations, but also is a good think to speak with him, because they notice how we are, they can notice something important is going to do. OUR EXPERIENCE WITH NÚRIAWhen we returned home after Núria have lost her eye, she was a lot of disquiets, increased separation anxiety and increased sleep anxiety. During the sleeping time, she awake several times weeping; she was not tolerating that we laid her face upwards to change the diapers; she was weeping or protesting when she saw any person with white uniform... In spite of the weariness, during several nights I or my husband got out of bed each time Núria was weeping. to console her and to favor greater emotional security. With affections, patience and confidence her anxiety and discomfort was being reduced and these conducts little by little were being solved in a few weeks. There was another conduct of our daughter that concerned ourselves: Núria was persisting in refuse to see herself on the mirror. Núria through her play spontaneously expressed separation themes and began to play a curious play with one doll: she repeat touching the doll's eyes and her eyes, and she compare the doll's eyes and her plastic eye. We named that she was trying to say with her plays: "yes, my baby, your little plastic eye is like the doll's eye", "your eye was damaged, the doctor cure you..." Little by little she began to watch the mirror, but she not looked toward her same, but toward us. In this circumstances, we were encouraging her: "watch, how much pretty you are"... "you have a plastic eye, you are beautiful with it"... We think to speak in reference to her fears is a good way to help her to overcome this. To help her to accept the care of prosthesis we use two suckers: one for mamy and the other for Núria. While I take out her plastic eye for washing, she play this situation with a doll. With this simple resource we've obtained Núria was fine during the cure. Recently, after the cure she plays this situation with her mother, trying take out her mother's eye. PREPARING NÚRIA TO EUA (AND HER SISTER)We have been concerned by EUAs, because my experience in mental health provides evidence that repeated hospitalizations can affect the child's adjustment and development. Also, there is considerable evidence that these can be reduced through some forms of intervention (preparing children for this experiences and trying to diminish the separation). We play with Núria "going and coming back again", we play dramatic play with families and animals like: daddy/mommy is going to work... ah! he/she is coming home again!... Time to time, in her play, we introduced some doctor and nurses in good role: offering something to eat to animals, playing songs... not only in medical role. The day before EUA we use a hospital-toy to explain her and prepare for EUA. With play activities, young children can better understand the information that would otherwise be too abstract or complex. This toy is a good reproduction about threatening situation (with operating table and other equipment, doctors with green surgical gown -dresses and masks) and a hospital room. We explained in a simple form what's the EUA: tomorrow, daddy and mammy we will go to hospital with Núria, the doctor must control her eye; see... Núria will go to operating theatre, Núria must sleep and doctor check her eye with a TV... mammy and daddy will be there, behind the door, waiting for you... This explanations were so much interesting for Laura, her daughter, and she asked us some more questions. After this EUA Núria hasn't got any increased anxiety, not any disquiets. We are very happy! We would like encouraging other parents to prepare their kids. With kind regards
Anna Romagosa and Antoni Falcó OK TO PUBLISH (If you think it's interesting and understandable) |
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