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Izas was tired on the 22nd of October. At home we thought she was incubating something. On Tuesday, she did not go to school, and that night we noticed she was using her right hand to use her spoon when she is left handed. The next day we took her to see the paediatrician.
The doctor saw something was wrong when doing a basic neurological test, and sent us to San Jorge hospital in Huesca. As soon as we left the clinic, evident medical symptoms began, such as a loss of balance.
On the 26th, we went directly to the emergency department of the mentioned hospital, where she was admitted and they practised a lumbar puncture. Throughout that night and the next day they continued carrying out tests. On the 28th, they transferred her to Miguel Servet hospital in Zaragoza in an ambulance.
When we arrived there, the neurologists decided not to give her any treatment until Monday 31st, when they would do an MRI. That same day, they diagnosed ADEM (Acute disseminated encephalomyelitis), and confirmed the diagnosis on Monday after the scan. They informed us that it is a serious disease and that recovery is very slow, approximately 6 months. However, they also told us that we were very quick in detecting the problem, and that most children that suffer from ADEM are admitted directly to the Intensive Care Unit with convulsions. They said that her prognosis was good due to our quick reaction and that she would not need therapy.
At that time, her symptoms were: loss of balance when she was moving, head tilted to the left, use of her right hand when she was left-handed, inverted smile, and difficulties to speak, not only pronouncing and vocalising correctly, but also a very low tone of voice, ataxia, and drowsiness.
They begin intravenous treatment with methylprednisolone (cortisone). They tell us that it may not be necessary, but that they were using it “just in case”. They inform us that there will be a noticeable improvement after three days, and there is. However, the improvement on that third day gets slower and does not continue, and instead two new symptoms appear: nystagmus (it is us who detect it) and her sense of taste has changed. The improvement was nearly exclusive to the head tilting; in everything else it was very slight, and very brief. When they discharge her from hospital, I ask: “She is not improving the way she should be, is she?” They answer: “no, not as we expected”.
During her time in hospital, especially since the slowdown of her improvement, I kept asking insistently if it could maybe be something else. They said no, and they only talked about sclerosis, but that was discarded.
We went back to Huesca. Her state is the same. But on the 14th of November, at 8:50am Izas chokes herself again with her saliva (as happened on her first night at the hospital in Huesca). Her colour changes from red to purple, I pat her on the back, sit her up, take her out to the balcony without stopping the patting, changing her position… We went straight back to the hospital and they sent us back to Zaragoza.
Although the Miguel Servet hospital were reluctant to admit her, saying that it was normal for her to choke with an AMED, we insisted, and they began treatment with immunoglobulin.
There is improvement on the second day. Izas could hardly talk, and that is the symptom that is disappearing, and her voice is nearly normal again. Her head tilting has also improved, but less so. Izas keeps clearing her throat but they are not worried about that. However, they later confirm that it is another neurological symptom.
Again, the same question and answer: “She is not improving the way she should, is she?” Their answer: “No, not as we expected.”
They discharge her. I have the feeling that something strange is happening… We have gone from an excellent prognosis with no consequences, to a torpid and non-satisfactory evolution. On the day of the discharge, I asked for Izas’ papers and tests so that I could take them somewhere else, ask for a second opinion, other alternative treatments… Although I have asked for a referral in Zaragoza, the answer is that they are qualified for ADEM patients, that they have experience, counting 20 cases amongst the whole team.
On the 23rd of November, we went for a check-up. I explained her new symptoms, the most evident is that she walks differently and even loses her balance when she is still, as well as short term memory loss. We continue the same treatment with oral prednisolone. We have to go back in 8 days. They still will not refer us even though I ask for it again. At the same time, they send Izas to therapy. We are already managing Izas’ referral by other means, and we also ask for a private check-up at the Sant Joan de Deu hospital. All we are waiting for is Izas’ medical history. I asked for it officially on her second admittance, on the 17th day of her disease, when I knew something was wrong.
Things had changed so much in 20 days! From a fantastic prognosis, from congratulating us for being so quick in seeing the symptoms, from not needing therapy, from giving her cortisone as a preventive measure, we have gone to immunoglobulin, continuous corticoids, and therapy.
After another check-up in which Izas has not improved, she is more lethargic, drowsier; we have the last one in Zaragoza.
On the 9th of December, although there is an evident regression, they start to lower the corticoids. They do not think that there has been a diagnosis error, no other treatment to prescribe, nor additional tests to carry out. They give Izas an appointment for the 31st of January for another MRI. We cannot believe it, seeing the deterioration of Izas’ condition.
On the 15th of December, we went to Barcelona. With the MRI results that we bring, which is the only document the hospital gave us, they diagnose a possible necrotizing encephalopathy.
That day, before going to the appointment, Izas cannot walk. She says “my legs do not work”. Although she recovers the ability, while we are waiting for the appointment, she loses it again and recovers it. They decide to give her the second session of immunoglobin as it is due (they can only give you a maximum of three sessions per month), and an MRI in 15 days.
They told me that after the MRI they may consider treatments such as plasmapheresis (a treatment that I had researched, read about, and found information on for ADEM, and that was never considered in Zaragoza, and/or immunomodulators, immunosuppressive drugs, cyclophosphamide,…) in case of confirmation of necrotizing encephalopathy.
With immunoglobulin, Izas shows a minor improvement in walking. However, on the night of the 24th of December, she starts worsening: she gets slower, clumsier, and more tired. On the 27th of December we go back to Barcelona, this time with no appointment, directly to the emergency department.
We were admitted. They listened to us and write down the situation that we are describing: no history of infections or traumas. They also admit that they do not “understand” Izas’ evolution. They decide to start from 0: they stop the cortisone, and 3-4 days after that she gets worse. She has involuntary twitches in her left arm nearly continuously, chorea movements, so they decide to treat her with intravenous methylprednisolone (cortisone), and again she improves slightly.
They do another lumbar puncture and all sorts of analysis, because they have to begin from 0 as the other hospital will not give us the test results. The do another MRI, here they will always be done with a spectroscopy.
They know that they do not know what is wrong with her, but they know it is not AMED. They search for anti-NMDA. It is horrific, but we want the diagnosis confirmed, we need a diagnosis, we need to know what is wrong with Izas.
We feel more confident now. The modesty of acknowledging that they do not know what Izas has, the effort that they are searching with, not giving up. However, Izas is getting worse. She can hardly walk, she hardly speaks, her facial paralysis now covers most of her face, although she can still eat and enjoys food…
They programme a clinic session with lots of specialists from the hospital and others, even foreign hospitals. That morning they had already told us that they needed to carry out a biopsy. The day after, 13th of January, a devastating day, the neurosurgeon came to inform us that they cannot practice the biopsy, that Izas would not get through it, that she would probably not make it out of the operating theatre. They say it is best to leave her be.
I am very honest, sincere, and clear with my words, so I ask them to explain what that means exactly. I ask if it is cancer… But they simply say that the oncologists, neurosurgeons, and neurologists are going to meet, and then they would inform us.
Verónica, her neurologist, explains everything afterwards. We wanted to die. They inform us that evidence shows that it is gliomatosis cerebri, that it has no cure, no solution, and that they are incapable of confirming it due to the impossibility of carrying out a biopsy given Izas’ condition. That same day we meet the palliative care team, who helped Izas and us so much.
On Monday we met the oncologists. I plead to know how long Izas has left… Dr. Ofelia estimates 2-3 weeks. We cannot believe it! She cannot be operated, and due to her general condition, we have no options, no opportunities.
We spend every night searching for information, information that we are unable to find.
Slowly but surely, Izas’ life is escaping from our hands without us being able to do anything.
Sometimes, Ofelia would have doubts and think that she could be here longer… but as I knew in Zaragoza that it was not ADEM, I knew Ofelia was wrong.
There were days when the doctors would come into the room and would tell us that there had been no changes, or that she had improved slightly… But I would say “no, last night Izas put her hand under my face, and every time she does that, she gets worse”. Unlike in Zaragoza, here they listened to me, believed me, believed what Izas would say through me. And I was right, that day she lost another function.
On the 27th of January, we were bathing Izas when she started to make noises and move forwards and backwards very slightly. It was strange because we had not heard her voice for a week. We took her out of the bathtub and called the nurses. The doctors, nurses, assistants came immediately. She was in convulsions, but as always with her, she was doing so discreetly, she was completely tense, stiff.
The convulsion were what everyone was waiting for: the convulsions that are consistent with gliomatosis and that Izas had not yet suffered.
The next day, we were waiting for her to wake up. We wanted to believe that she was lethargic from the disease and the medication to stop the convulsions… But that was not the case. She did not wake up until I said that Dora the Explorer was coming to see her. At that moment she opened an eye, only one, her gaze lost, but she had opened an eye. We knew that somewhere inside her, she was still there. We never stopped speaking, singing, kissing her. She was there, conscious or not.
On the 1st of February, Dora the Explorer came at 9am, very early. Someone had told her that Izas had spent an awful night, so she quickly came along to meet her. I then convinced Ixeya to go to the hospital school; she had spent three days in Izas’ bedroom. She knew she was very ill, she even asked us to leave the room one night to spend time with Izas alone, say goodbye, kiss her…
I had to take her myself, even though I did not want to leave the room. But Ixeya needed to rest, or so we thought.
When I returned to the bedroom, Izas heard my voice and her father’s, who had not moved from her side. And she knew it was her moment. We had told her we wanted to say goodbye together, we wanted to see our little Izas turn into the prettiest pink butterfly that existed in the world. We wanted to be with her on that last breath. Yes, that 1st of February of 2012, in the morning, Izas died, and part of us died with her.
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