Anita's Inspiring Story
ABOUT ANITA, THE ASSOCIATION'S RAISON D'ÊTRE
Anita left us on December 19, 2014, her body could not take any more, and luckily she was able to leave peacefully, at home, surrounded by love and her loved ones (thanks to the continuous support and accompaniment of the Pediatric Palliative Care Unit of Sant Joan de Déu hospital in Barcelona).
"We want to continue researching because we know it is the only way for children with "developmental cancer" to be cured, and also, because we don't want any parent to have to go through what we have gone through, feeling helpless and without alternatives, due to lack of scientific resources."
Carolina Amado and Fernando Sanchiz (Anita's parents)
ANITA'S STORY
(by Anita's Mom)
Barcelona, September 26, 2014 - It all started one night when Anita woke up crying and asked me to change beds, we spent the whole night moving from one side to the other... from the sofa to her bed, from her bed to ours, to the sofa.... She would fall asleep for 10 minutes and wake up crying... and we stayed like that for almost twenty days.
He also started not wanting to sit down. At school they told us that when he sat down, after 2-3 minutes he would get up again and there was no way for her to sit down again. After seeing the diagnosis we understood everything, it was because of the pain.
She started to have tenths... 37,5... 37,8... 37... We took her to the emergency room and they told us it was constipation, but she went to the bathroom regularly. Something didn't add up. She was sitting for less and less time, and above all, what caught my attention the most, was that she kept looking lost for a while, motionless.
Those 20 days were eternal, anguishing because I did not understand what was happening, but I sensed that something serious was about to happen.
Finally, on the morning of April 1st (2011) I left Anita at my mother's house because she was not feeling well. At noon I received a call at work, it was my mother and she was very worried and distressed. She told me that there was something serious wrong with Ana and that she had to see a doctor right away: "she is pale and almost not moving", were her words...
We were in the ER all afternoon, they sent us to Sant Joan de Déu hospital to do a CAT scan, and when we returned to Clínica Teknon they gave us the news :
"YOUR DAUGHTER HAS CANCER" ...
That same night we ended up on the eighth floor of Sant Joan de Déu hospital, the oncology floor.
No words...
Anita had a retroperitoneal mass of 90x60x53 mm, which went from the third lumbar vertebra to the pelvis; another ischiorectal mass of 51x51x44 mm in contact with the rectum, the coccyx, the last sacral vertebrae and with the right gluteus maximus muscle, where there was another lesion of 26mm... and she also had metastases in the lung (two nodules, one of 12mm and the other of 5mm).
We couldn't believe what we were hearing!
How could it be that in such a small body there were such large masses? How could it be that he had cancer?
Nothing made sense, but it was real. That's why it hurt so much...
It was all very fast. In 5 days they did the biopsy to put a name and surname to the tumor, and they placed the port-a-cath, a device used to put the chemo.
The diagnosis was "germinal tumor of the endodermal sinus"; a rare tumor but in principle with a good prognosis if it responded well to treatment.
On April 8, she was already receiving her first cycle of chemotherapy.
The first few months were really horrible, I couldn't stop crying, I didn't understand anything, sleepless nights... Why was this happening to us, why did Anita have to put up with all this?
We began to live in a world parallel to that of the rest of the people, and even today, after 3 and a half years, we are still living it. The notion of time disappears, the rest of the world disappears.... I remember walking down the street and when I looked at people I felt very strange... as if I no longer belonged to the real world.
I felt stuck, unable to enjoy anything, unable to move forward anywhere... with a lot of unknowns, unanswered questions and above all with a lot of fear.
We learned to live from day to day, almost to the minute, because at any moment things could change, and did change without us being able to do anything about it.
Our worries and thoughts changed in an instant.... Our only priority was, and is, that our daughter heals, that she is well; try to be well yourself to be able to transmit peace and serenity to her, and make the hell she is going through more bearable. Try to make this hell as pleasant as possible, try to handle it naturally, without drama, because you know that your daughter is the reflection of your emotions and if she sees you worried or sad, she will feel the same way you do...
Being so small, we had the advantage that the psychological factor was in our favor....
But how much suffering for God's sake!!!!!
Even if you don't want to, you start thinking about the worst, even if you don't want to, the idea of death appears in your mind; we are talking about cancer, about your 2 year old daughter with cancer, your heart starts to squeeze you and the anguish takes over your whole body... and your mind; you think that you are not going to be able to stand it, but you do whatever they throw at you. and of your mind; you think you are not going to be able to bear it, but you endure everything they throw at you; you do whatever it takes and you get your strength, I don't know from where, but you get it; and when you think you can't take it anymore, you continue to endure, because for a child you do whatever it takes; and then hope appears, the blind faith that your daughter is going to be cured!
It is the only thing that allows you to keep yourself whole, to trust that everything will be all right....
No matter what happens, she will heal!!!!
The luck we have had from the beginning is that Anita has made it easy for all of us, collaborating with nurses and doctors, and putting up with the medication quite well; she has allowed us to make something impossible to deal with into something bearable.
Are you sure you put her on Chemo? I was asking the nurse while Ana was running down the hallway!
With her good humor, her joy, her sweetness and her jokes, she has allowed us to keep us whole and has helped us to endure something unbearable: the worst thing that can happen to you without a doubt, that your child has cancer, a nightmare that will accompany you all your life.
After 4 cycles of chemo (1 cycle every 21 days) with its low defenses, admissions for fever, low platelets and hemoglobin, and a lot of unimaginable things to take into account, the tumor had shrunk quite a bit and they decided to operate to remove what was left.
They took out his coccyx and scraped the areas where the tumor had been in contact with the bone or still was. More suffering!!!!
First major operation! The worst thing of all is to see your daughter in pain, to see that she is having a hard time, that she is suffering... and on top of that not being able to do anything ...
They talk to you about morphine and at the beginning you have a lot of respect, but when you see that it is the only thing that takes away her pain, all prejudices disappear.... The only thing you want is not to see her suffer, it is really unbearable and desperate to see your daughter in pain, to see her sad and dull look...
You learn many things, based on suffering. You learn not to get ahead of yourself: doctors always explain to you EVERYTHING that can happen to your child, vomiting, nausea, sores, and an endless list of symptoms that you don't even want to hear about, and with time you learn not to worry until they happen...
In the end, these are life-long lessons, like living by the minute... the bad thing is that we have to hit rock bottom and go through a very bad time to learn it. You never stop thinking about how unfair life is. Why my daughter?
The only important thing in this life is to have health, that your loved ones have it, the rest doesn't matter.... You also realize how important it is to have good friends, to have a family that helps and supports you, to form a good team with your partner, and above all, how important it is to be positive, your attitude and your thoughts are the ones that define how everything will go.
It's up to you, you decide how you want to live your life... bitter and complaining about everything, or accepting what happens to you and enjoying the little things.
Even if it is sometimes difficult, it all depends on the messages you send to yourself at any given moment!
Still, an experience like this puts you to the test?
It's hard to be strong when you are touched by what you love most in the world.
When you enter a hospital, and it becomes your second home, it is as if you are forming a new family. Doctors, nurses, orderlies, waiters and waitresses, cleaning ladies, volunteers, clowns, and all the people who used to work there become your new circle.
We have been lucky, of course the Sant Joan de Déu hospital in Barcelona and its workers are incredible. The support, love and security they have given us, and continue to give us, is priceless, and above all the joy with which Ana goes to the hospital after three and a half years, demonstrates the quality of the professionals who work there.
You are an admirable team!
After the operation, which was in July (2011), Ana was almost a month without being able to sit, and very afraid to poop because of the pain.... It was a complicated issue. From then on, the blood tests were going well, and the Alpha Fetoprotein, which is the tumor marker in her type of tumor, was in normal values, between 0 and 15.
We made the mistake of celebrating and toasting because Ana was cured! I kept saying to myself: "That's it, she's cured, the nightmare is over!
But it wasn't!
On December 30 (2011) the Alpha Fetoprotein began to rise....
Horrible, desperate, not again!!!!
Please!!!! No!!!!
Everything was getting complicated... on top of that, the first cycle of chemo did not work and fear took over us....
Fortunately, the next one took effect and the Alpha Fetoprotein started to go down. In part, we were calmer because we more or less knew what was going to happen, but at the same time the reality was harder and harder; a relapse is never good, and on top of that, this type of tumor is usually very resistant and aggressive when it reappears.
Everything went more or less well... 3 more cycles of chemo and the alpha-fetoprotein was in normal values, she was operated again ( ) and then in July (2012) radiotherapy.... 18 sessions.
Two weeks after finishing the radio the Alpha Fetoprotein went back up.... It was horrible!!!
Second relapse... Another operation and more Chemo!!!! Fortunately the chemo took effect and Alpha Fetoprotein was back to normal values.
It's already December 2012!
Once again, by the end of the year, another bad news... The alpha was rising again.... On January 10 (2013) she was operated again, and at the end of February another 13 sessions of radiotherapy started; halfway through the sessions the alpha was rising again...
On March 25 another operation... And more chemo. We were asked about the possibility of performing an autotransplant, since in some cases of this type of resistant tumor it had been effective.
On May 21, another intervention to place a catheter in her neck to perform the apheresis and remove the stem cells that would allow her to recover from the high doses of chemo of the autotransplant. June, July, August and September in and out of the hospital with the high doses of chemo, with its consequences (malaise, important weight loss...) and on top of that with the Alpha Fetoprotein that did not come down completely.
More bad news: the autotransplant was not effective.
On December 9th another operation... Really Desperate.
In mid-January (2014), we went to Madrid to see if Ana would enter a clinical trial on the oncolytic virus.
And more Chemo... The Alpha Fetoprotein was going down, but it was coming back up, and getting higher and higher.
When it seemed that there was no more chemo possible to give her, Dr. Jaume Mora, Ana's doctor and head of the Oncology Department, told us about a study that was being carried out in Dallas on germinal tumors, where they had genetically modified zebra fish and had managed to make them develop germinal tumors.
They had tried drugs on them that had worked.
At that moment I knew that Anita was going to be cured, if we were lucky enough that somewhere in the world there was someone doing research on this type of tumor, which occurs in 1 person in every 2.4 million.
Luck is on our side!!!!!
Ana started taking the medication and at the beginning it was working well: the Alpha Fetoprotein went down and allowed us to space out the chemo cycles, and thus give her little body a break, which was beginning to show signs of exhaustion.
We spent several months with the new treatment, alternating with chemo until his body began to complain, the kidney showed signs of toxicity and in May (2014) he had a biliary colic, and they saw that the gallbladder had stones, some small and dangerous, probably caused by one of the medications she was taking.
It had to be removed: another operation, more pain, more suffering.
At the end of July (2014), we had the biggest and most horrible scare of all: she had a PTE, a thrombus in the lung, added to the disease growing in the lung and in the pelvis. "We are at a dead end," the doctors said.
We thought that Anita was leaving us, but, luckily, she didn't.... The day of her Saint she made a change and little by little she was recovering. We left the hospital with oxygen at night and the risk of having another PTE at any moment; in fact they gave us a "kit" with morphine to sedate her if necessary. Once again speechless.
Desperate, increasingly desperate.
As of today (September 2014) we are still living up to date, even with the treatment, everything depends on Ana's blood test to decide which chemo she can have, depending on the state of her organs (those that have been damaged by the chemo) she is administered one or another medicine.
The problem is that chemo only slows down the tumor, it is not able to eradicate it. We are really on a path, which I wish and hope will have a way out, but I am very afraid....
We are deep in fear.
Ana's life hangs by a thread, and that is why we have been forced to mobilize to try to find a solution for Ana, and at the same time for all those children who are going through the same thing.
Dr. Mora put us in contact with Dr. James Amatruda and his team in Dallas (Amatruda Lab, UTSouthwestern Medical Center), and our next step is to open a specific investigation of Ana's tumor, a tumor that has relapsed 4 times, and that against all odds continues to respond to Chemo, and allows Ana to continue living... with her limitations, but living.
I wish no one had to go through what we, and many other parents and children, are going through. I wish that tomorrow cancer could be eradicated....
But for that you need research, and for research you need money, we need you to help us to make this horrible disease that only brings suffering and pain to those who suffer from it, and to their environment, disappear.
We need you to help us raise money to be able to research and discover new things that will change the trajectory of this disease, and that of the children and teenagers who suffer from it.
Barcelona, January 19, 2015. Today it's been a month since our beautiful and sweet Anita left for good. Her body gradually shut down, and finally stopped working after enduring endless treatments, operations, medicines, punctures, radiation and a lot of chemotherapy.
After 3 years and 10 months of continuous fight against a very aggressive tumor, which forced her to constantly receive chemo to stop it, her body could not take it anymore.
This should not have to happen...
With all the means that exist in the world, the technological advances that are appearing, and the number of professionals that exist, developmental (childhood) cancer should have not taken any child.
But unfortunately this is not the case!
Those who are unlucky enough to have a rare and aggressive tumor, such as Anita's (which occurs in 1 in 2.4 million people), have a very difficult time. Mainly because there are no research studies with results, no protocols, nothing... and doctors go blindly looking for information in adult cases, even though they know that developmental childhood cancer and adult cancers are and act completely differently.
They are trying new drugs, different combinations of chemotherapy... but often without knowing what to do to fight the tumor, because they do not have enough research.
Why nobody knows anything about all this, and why does the state not invest in developmental childhood cancer?!
In Spain there are 1,200 new cases of childhood tumors every year, and in principle 2 out of every 3 children are cured, which means that 400 children a year die of cancer in our country.
If we can raise awareness of this problem, mobilizing all of us to raise funds to open new research, we could discover new avenues of treatment, or discover how these tumors develop to prevent their growth.
We need the world's population to be aware of this problem and become aware of it. Mainly because this can happen to any child, since developmental childhood cancer is caused by a genetic failure during gestation, and the sooner we investigate, the better the chances of children and teenagers who today, and in the future, will have the misfortune of being born with this disease.
We have lost our daughter, and I know that nothing I do now is going to bring her back to me? I hope that by writing these lines I can prevent other parents from going through the same thing.
To prevent an entire family from losing a child, a sibling, a cousin, a nephew, a grandchild or a great-grandchild... hopefully together we can raise funds to research this disease that claims so many lives every year.
I don't want to give up hope that finding a cure for cancer is possible, not before without having tried everything.
We cannot close our eyes and look the other way, because deep down we do not know who will have a child with cancer tomorrow.
Research takes years to find results and the sooner we start, the more children will be saved in the future.
Carolina Amado - Anita's Mother and President of the Asociación Benéfica Anita