Our daughter Maria was 5 years old in October 2009, we were worried because she was a little pale, tired , she woke up with a drop of blood below her nose and had a small bruise on her knee. Aside from these not too unusual symptoms for an active 5 year old, perhaps what worried us most was that she was not herself, she cried and just seemed tired. I will probably never forget the day I yelled at her because she refused to walk and I had to carry a rather large 5 year old home, “You’re a big girl now I can’t carry you! I don’t even carry your 3 year old brother! What is wrong with you?” I scolded her tired from carrying her for over a block.
“I don’t know mommy….” she answered. How were we to know …
It was a holiday so we got a doctors appointment for the first available time and her pediatrician ordered a blood test as a precaution, her biggest worry was the colour of her face, a bit like the colour of your face after you throw up. I thought she might have hepatitis because her face had a slight almost yellowish tinge. The next day she was the only child having a blood test and she seemed to drag herself , this time as I looked at the frightening black circles that seemed to have suddenly appeared under her eyes I carried her most of the way. She was never very good with doctors and she fought the nurses off with amazing strength which made me feel a bit more confident that maybe it was nothing after all, fortunately they finally managed to get a blood sample out of her. We left her at my parent’s house, she seemed normal as she waved goodbye, I thought it was good not to take her to school since it was probably a virus.
That afternoon the lab called saying the blood test must be repeated urgently so we rushed her to the Children’s Hospital Niño Jesus in Madrid a 15 minute drive from our home in Spain to repeat the blood test. A few hours later that same evening shocked and terrified we were being admitted to the oncology ward, the diagnosis “Acute Leukemia . As I read these words I realized that this was one of those terrifying moments you know exist , one of those seconds that change your life forever. Immediately, Maria got the first of many blood transfusions that would save her life and keep her going throughout the treatment.
Within 24 hours the diagnosis was confirmed Acute Myeloid Leukemia (AML) and they began chemo the next morning. Maria would receive 5 cycles of chemo and each cycle would last just over a month. The total treatment would require a Hospital stay of about 6 months if all went well.
For parents the first 48 hours are hell, as simple as that, and you just have to get through it. Fortunately, it gets easier once you have come to terms with it. Once the initial shock was over we had to be thankful that we had such a specialized hospital so near to our home, people from all over Spain came here. It is one of the best hospitals in Europe for childhood cancers.
Any parent that has been through this will tell you that the first 2-3 days are frightening.
You are sure your child is going to die, in fact you are completely sure YOU are going to die, you will probably even say to yourself “I am going to die”!! But you won’t. The world doesn't turn off the light and put you out of your misery , it continues and it gives you the chance to recover and thankfully you will recover and be able to take care of your family. You need time to accept this new situation in your life and once you have absorbed this you have to decide how to continue. I first went into a sad place asking why us? As soon as I asked it I felt guilty so I tried to look on the bright side, “we are lucky to live in a country with health care , she is strong and healthy (apart from the leukemia ) , this is a great hospital, we have a great family that will help us out …..”
I tried to look at all the good things , “this is good; imagine if it was a fatal accident we would not have a chance, imagine if we were in a country that has no health care , imagine if we were from a third world country we would have no chance. ” imagine the worst and you see that you are not in such a bad position. I think I probably silently cried non stop for 3 days but never in the presence of Maria, when she slept I cried all night , I just couldn't help it! Although I never cried in front of her she say my red eyes “what’s wrong with your eyes mommy?” she asked “They’re just sick sweetie.” I replied. My sister brought me those eye drops that I had seen advertised for red eyes on TV. Wow !! Its miraculous !!It works! When I left the room I wanted to turn the tears to continual off mode , I didn't want to cry anymore but the tears kept coming but finally after 3 days they stopped. That part was over. ( End of part 1!!)
Almost instantly our priorities changed suddenly very few other things were important. We reorganized our family and home for the coming months.
The Oncology team is wonderful, the doctors, the nurses, staff and all the volunteers. They are incredible professionals all of them and they make you believe in humanity. When you are at your lowest ebb they take control of the situation that they know so well. While you, try to go along still shocked and confused with the tests and terminology, still trying to come to terms with the fact that you are living every parent’s nightmare.
The doctor tried to reassure us “it is an illness with a scary name but it has a treatment. We will start chemo right away and if necessary , there is also the option of a bone marrow transplant”. The prognosis 50% chance of survival. “There are risks, there can be side effects, the chemo might not work, or that the chemo could cause toxicity…”. He went on to describe these possibilities, I waited for him to finish and then anxiously asked “but can everything go well? Can all these bad things just not happen?” he smiled and said “of course!” and those were the only words I needed to hear.
Soon we would have more information on Maria’s cancer it was AML type M2 with a chromosomal trans-location t8:21. The M2 meant that if there were no complications, initially a bone marrow transplant would not be necessary; the chemo should be able to cure Maria. All this meant the prognosis rose to 70%.
After receiving this positive information we could do nothing but be thankful for how everything was going, many others were not so lucky. We tried to keep as positive as possible at all times and make sure that Maria was happy and strong so that her little body could fight this illness with all the necessary energy. This was relatively easy for us because Maria seemed quite healthy most of the time also she had a wonderful sense of humor, a bright outlook and generally a happy disposition. Most important of all she had no serious complications.
Since we lived relatively close to the hospital I spent Sunday to Friday at the hospital and Andy, my husband who was working came for lunch everyday and then stayed at the hospital from Friday afternoon until Sunday afternoon so I could go home to be with our younger son. This worked quite well and I soon got used to sleeping in the blue lazy chair every night. I didn't find it too uncomfortable. In fact six months later I kind of missed it!
There were times when the bad news around you made it difficult to stay positive and for some reason sometimes it seemed to come in waves. In these cases I just wanted to put on blinkers to try and stay afloat. Many of the families in the hospital were very positive but some could be extremely negative talking about how unlucky they were or referring to the chemo as poison , at first I always tried to help out but if they didn't turn positive then I backed away. There is something that has been made crystal clear to me in the last years; someone’s attitude does not reflect their situation. Two people in the exact same position can reflect a totally different situation. Some of the most positive and friendly people were in excruciatingly dire situations and still continued to be positive. Other people can be negative even if everything is going wonderfully well.
Since we were isolated for most of the 6 months we spent in the hospital we did hundreds of arts and crafts, for Halloween we decorated her room. Before and after Christmas, Maria’s room looked like a Christmas flea market. She would dress up for any or no occasion, we would film the nurses and volunteers when anything special happened on our ward. They were fantastic! We would interview people and film Maria talking about her life in the hospital, making sure to film it all so we could remember all the wonderful people that were with us. We would celebrate Barbie weddings and she would give dance class (she was the teacher), she would sing, dance and paint. Sometimes I don’t know how she had so much energy , oh yeah the blood transfusions!
Some days she couldn't move, so she lay in bed watching TV unwilling or unable to make the effort to look at anyone coming into her room or answer anyone asking her a question. Once we understood she was fatigued due to the chemo or illness we respected her need to rest . Sometimes she needed complete rest for one or two days so this is what she did until suddenly she was better and she was up dancing and singing and dressing up and painting again.
There were other days that she would be dancing and suddenly say “I am cold, I have a fever” and she would get in bed, and sleep through the fever. It was caused by a certain chemo. On these days she would ask for the volunteer that gave Reiki to come and he would patiently and silently give her Reiki for hours. These times were few and far between. Then when the fever went away she would get up and dance again.
We tried to make the best of the situation. Maria was well taken care of and surrounded by wonderful people. She had school lessons in her room everyday since there is a school in the hospital. A couple of her friends came to visit but she was mainly isolated so it was not often. Her teacher from her school in our town came to the hospital once a week , every week and spent those entire afternoons playing with her and telling her about what was happening at school and how her friends were.
We spent 6 months at the hospital and were sent home to rest in between 3 of the 5 cycles (5 days each time). We were isolated almost the entire time so Maria was unable to enjoy the numerous hospital activities in the theater and group activities outside her room and we had to extremely limit visits from family, friends and volunteers. Even so Maria was happy and had the love and support from everyone around her, a parent 24 hours a day, everyday, plus family and the care and attention of the entire staff and volunteers.
As often happens in these situations, it is the siblings that have a harder time than we might expect. My older son had come back from travelling abroad to help. Our 3 year old son continued at school and we tried to keep him in as normal a situation as possible., and my parents lovingly cared for him. Despite everyone’s attempts to keep him sheltered and loved he sorely missed his sister and mom. He loved coming to the hospital to play with his sister and spend some time in what he thought was a much better place than home, clowns, volunteers and both his parents in the same place at the same time were a much needed treat for him and it was often hard for him to leave what he saw as a wonderful place to visit, the oncology ward of the children’s’ hospital.
We were very lucky, the chemo did it’s job causing no serious adverse reactions, and there were no uncontrolled infections or complications, thanks to the meticulous care her doctors took every step of the way, as well as a lot of good luck.
Maria never asked when she would go home, never complained as she looked at her hairless image in the mirror, no hair, no eyelashes, no eyebrows. She made a terrible fuss whenever we had to change a needle or do any type of test (she’s gotten a bit better recently though!). She never complained she kept up her good humor and overcame the challenge of how to keep busy inside a hospital room for 6 months.
Maria is now in complete remission and she doesn't have to take any medication. She has check ups every six months now. It has been almost 4 years since she was diagnosed and Maria was back at school 9 months after she was diagnosed, a bit extreme but we were extremely lucky since she suffered no infections or complications of any kind after coming home. We have been able to return to our much missed “ daily routine” which was wonderful!
For AML the risk of relapse lessens as you leave behind the day of diagnosis and we have passed the 3 first most critical years and although “there are no guarantees” everyday takes us further from that date so we can only be thankful.
We are very grateful to the wonderful people, the professionals and volunteers that accompanied us on our journey. Thank you! We had wonderful support from our family in particular my parents and my sister who helped us every step of the way, from eye drops to everything else. Thank you.
It is true that, that one second in October 2009 changed our lives but we have met wonderful people along the way, beautiful families which will always be in our hearts. I hope I never forget that each day is precious and we owe it to those that didn't make it to cherish each day and remember how lucky we are.
Since we know how difficult it is to receive the news that your child has cancer we wanted to start this website and hope that the stories in it will be helpful and give any new families entering this situation, encouragement, strength and hope. We have thrived on the survival stories we have seen at the hospital and we hope that the stories we receive and put in this website will help you too!!
Good luck and don’t lose hope.