Maria D's story
On September 29, 2009 we took our four year old daughter Maria to her pediatrician because she was not herself and was not well. She had always been a cheerful and strong girl and now she wasn’t hungry, she was tired, she had a lot of painless bruises that seemed to appear for no reason, and she had huge nose bleeds. After visiting the doctor more than 15 times they finally requested a blood test and less than 12 hours later we were sent to the Children’s Hospital Niño Jesus in Madrid.
The next day the oncologist told us Maria had Acute Myeloid Leukemia and would need 5 cycles of intensive chemotherapy and the treatment would last about six months. The exact diagnosis we were soon told was Acute Myeloid Leukemia (AML) eventually we would find out the AML also had FLT3 internal tandem duplication (FLT3/ITD) .
It was a difficult time , between cycles we had periods of up to 28 days of isolation . Maria kept losing weight and a feeding tube had to be inserted. On November 4, Maria was very sick with septic shock , with a lot of " bugs " with a fungus Candida albicans, and also her chemo had caused her toxicity ... finally they said that receiving standard chemotherapy was not working because the FLT3 gene was duplicated in tandem, something that could only be cured with a bone marrow transplant . Now I know all these terms and their meanings but when we heard them for the first time we didn’t understand anything, though we would nod as if it was all very common.
We were all tested for bone marrow compatibility, none of us were compatible, so we had to wait for an external donor.
We ended up staying at the hospital for 18 months, during which time we left the hospital two days a week. Time passed and no compatible bone marrow donor was found.
Finally our oncologist Antonio Perez Martinez informed us of the possibility of entering a trail that was taking place at the hospital for “ Hematopoietic stem cell transplantation from haploidentical family donors” this meant that one of Maria’s parents could be a donor.
On March 16th, 2010 Maria received a transplant from her father. We had to return to the hospital several times for various reasons ; cytomegalovirus (CMV ), pneumonia and Skin Graft-versus-host disease (GVHD), this is a complication that may occur after a bone marrow or stem cell transplant. Every time we were sent to hospital we were scared , very uncertain and extremely worried. Fortunately, in the end the transplant did its job, the duplication of the FLT3 gene was broken. It had worked!
When it’s over you always remember that however bad things are there are always good things. The bond you create with your sick child and the relationship with other parents that you are with for 18 months although it seems like several years. Despite how bad it was Maria always had a smile on her face. It’s something only kids know how to keep. Despite this, she matured a lot during that period, living in an adult world and with a very tough disease. Therefore, you should never show negative feelings in front of the kids, because they already have enough to deal with and don’t need to see their parents down.
Maria’s younger 14 month old brother had a difficult time when we got the diagnosis we sent him to live with his grandparents for about 2 years. He had nightmares and would wake up vomiting, the psychologist said he had severe stress at being taken away inexplicably from his parents and sister.
My family was a great help. Also the support from other parents, I will always remember the hug Lupe another mom gave me the night we arrived in the oncology ward. Her words were always a great help and she understood how we felt. We had great support during those months from Maria’s oncologist Antonio Perez Martinez.
After the transplant Maria had to continue with regular checkups first once a week then depending on the blood test results : every month, every three months , every six months each time it is less often ...now it’s just once a year .
Once you can look back, after these past years, you realize that you totally change your priorities in life. You become mentally and physically stronger and basically a better person, you help more people and you value things differently, perhaps before you had not stopped to think about what is really important. You give less importance to time, money, work, .... you give it the real importance it has.
My last advice for parents who are experiencing these bad times now is to have confidence in the doctors and never lose hope, always think that everything will be fine.