Diseases

Leukemia: the testimony of a patient

Marie, 40, mother of François, 13, who developed leukemia. She gives us her testimony ...

At what age and how was the diagnosis of leukemia made for François?

He was 8 years old and was complaining of leg pain. Everyone was talking about growing pains. At the 2nd appointment with the pediatrician, he referred us to a pediatric rheumatologist at the hospital. When she examined François, she immediately told us about the blood test to be done urgently. Our world then collapsed during the confirmation of its acute lymphoblastic leukemia.
The transplant was not initially considered but the first chemo protocol did not produce the expected results. Under the microscope, the blasts had disappeared but the residual disease remained too high, hence a high risk of relapse.

How was the transplant prepared?

The transplant was considered during the summer. Before that, it was necessary, among other things, to find a marrow (or cord blood) compatible and put Francis in remission. In October, we were confirmed that a compatible marrow was available, the donor was ok, and the transplant was "fixed" in December. From there, the heavy protocol started. A very large pre-transplant assessment: blood test, cardiac ultrasound, respiratory tests, brain MRI, lung radio, samples, total irradiation of the body morning and evening for several days.
Finally, the entry bubble or UP (protected unit). It was washed in full with Betadine® in a first airlock, rolled in a sterile cloth and deposited in its bubble where the waiting pajamas, comforters, consoles ... completely sterilized in anticipation of its entry. There was chemotherapy treatment to kill the last marrow cells that could have resisted.

Can you tell us about the transplant itself?

December 5: it was the big day, until the arrival of the marrow (from abroad), I had time to imagine a lot of "gay things", like the hijacked plane, the person in charge of the transport who breaks a leg, the accident of the ambulance ... François him, played quietly with the PSP. Once the marrow arrived, the emotion was endless and my heart leaped, with tears in my eyes.
Ten minutes later, a gloved, masked, masked nurse came in with the pocket resting on a green sterile drape. It looked like she was wearing the Holy Grail, and there I think that a marrow pocket is really beautiful, and I started crying again. When everything was ready, the nurse slouched down and I could see the marrow coming down slowly into the pipe. I was prostrate to watch the marrow while Francis, who was always impassive (apparently), was playing at the PSP, and the nurse made sure the hose did not get stuck, and she was regularly taking the constants. An hour later, the last drop of marrow flowed.

And after the transplant?

Waiting ... Pre-transplant treatments have caused intestinal and oral problems. Francois was on morphine and swallowed nothing. We spent all our time with him, watching TV, playing scrabble. Each time it was all a sterilization ceremony to enter the room where we should not do anything, or even touch it. On the ceiling, there was a grille that was constantly blowing and loudly sterile air and at the bottom of the walls, there were aspirations for "used" air.
Every day he was made a lot of exams including a blood count and we looked at the number of whites who, since the marrow transplant, was 0. He was transfused every day for blood and platelets, the new marrow not yet operational. Finally, on the 21st of December, we were thrilled: 300 white blood cells: the marrow began to work. To celebrate that I cried! December 24 with 2, 400 whites: it was Christmas! The white blood cells continued to increase until we were allowed to go out with a daily visit to the hospital for examinations, punctures of the marrow, lots of medicine to take ... Little by little, he who should not see anyone, could receive a friend at night, he remangait very slowly ... And in a few months, we will celebrate the famous 5 years of remission ...

Nothing else ?

I would like to add something in my testimony concerning this bone marrow transplant: from the day we knew that a marrow was found today, the donor is an integral part of our life. We do not know him, we'll never know him, but we think about him everyday. When the marrow pocket arrived, I immediately imagined the man or woman who somewhere in the world at the same time was recovering from his donation in a hospital room and who probably had to hope that his gesture was going to save someone.

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