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In a moment you will meet Kasia, Amelia’s mother. The girl is 13 years old, suffers from leukemia, has been living in the hospital for 11 months and is waiting for a drug – a drug that cannot be produced even in the best laboratories, a drug that we carry within us – hematopoietic stem cells. Ami needs a compatible marrow donor to live. There is no “genetic twin” in all the world’s marrow donor databases. But what are 38 million registered people compared to 7,8 billion living in the world …?
It did not wait for the pandemic to end
The first entry on the blog «For Amelia» (www.facebook.com/dlaameliidkms) is dated July 12, 2021, but the girl’s medical history begins six months earlier.
December 2020, the second wave of the pandemic. Even before Christmas, 12-year-old Ami is feeling unwell. She is weak, has a low-grade fever and enlarged lymph nodes. He doesn’t come back from the last of his daily walks with Dad. He sits down on the sidewalk and has no strength to get up. Mom has to go get her by car.
At first I thought it was ONLY COVID. During the TV visit, the doctor suggested a coronavirus test, no peripheral blood counts were performed. It was Friday, we waited the weekend away, and on Monday we privately called a doctor. He came in uniform, examined Amelia and ordered a blood test, which we did on Tuesday. The lab called Amelia’s dad, he called me. In the handset, I only heard that we were to go to the Children’s Hematology UCK in Gdańsk. I was hoping it was a standard consultation. The doctors from the ward already knew, they were waiting for us … Acute lymphoblastic leukemia (ALL). The number of blast cells, i.e. cancerous cells, in the peripheral blood reached 700. It was necessary to administer life-saving chemistry immediately. For us it was like a collision with a speeding truck. Knockout diagnosis …
Amelia’s parents knew the results of the bone marrow biopsy two days later. T-ALL – T-cell acute lymphoblastic leukemia, a subtype less frequent and more difficult to treat. For the girl, her only chance for life was to transplant hematopoietic stem cells from a compatible donor. The optimal one is an HLA-compliant brother or sister, but Ami is an only child. The whole family decides to do genetic testing… and nothing. An unrelated donor is needed. A “stranger” is needed.
The walls are steeped in fear
The first weeks on the ward were a shock. Sometimes difficult, traumatic, full of question marks. Amelia’s parents had to learn “no disease” from scratch. This is what leukemia is called – a cancer of the hematopoietic system that can affect anyone regardless of age, gender or lifestyle. For the next six months, the girl is treated according to a protocol designed for high-risk people who are eligible for transplant.
It was treatment during a pandemic. A closed ward, a cramped three-person room, no possibility to go outside the ward, even to a hospital shop. Imagine three little patients in intensive care and their terrified parents pretending that everything is fine. Additionally, each of them has a different doctor, a different nurse, and groups of students pass through the corridors. In all this, you need to take care of the baby and deal with your own emotions. And there are many stimuli, information and activities related to treatment. Blood transfusions, platelet transfusions, chemotherapy administration, fluid balances, steroid therapy, biopsies, punctures, sleepless nights and pump alarms. Sleepless nights. In addition, the changing body of a healthy child yesterday. Her fear, anger, helplessness and sadness. Hope, it gave us the feeling that we were in one of the best possible places and the awareness that a compatible donor would be found soon.
In May, “I woke up” …
Bone marrow stem cells from an unrelated donor are a drug that is needed by over 80 people worldwide each year. patients. Some people find out that this drug will be necessary on the day of diagnosis, for others it is the only treatment option after relapse, for others it is necessary despite chemotherapy treatment. Currently, about 38 million potential donors are registered in the world, of which 2 million are in Poland. Unfortunately, still every fifth Polish patient who needs a transplant does not find his “genetic twin”.
From the beginning of treatment, we were assured that a compatible donor was usually found. The last case when no donor was found for a patient of the pediatric hematology department of UCK was many years ago. So we waited hopefully and impatiently for the good news. Unfortunately, the “bad” future came: there is no compatible donor for our Amelia. A potential donor from Romania turned out to be inconsistent after a more detailed examination. A potential donor from Poland could not share her haematopoietic stem cells. I literally “eluded” … – how is it possible that among 38 million registered donors in the world there was no “genetic twin” of my child? And how am I supposed to tell him about it? Her bitterness was the two paralyzing sentences for any parent: “You don’t do that. It is not how it suppose to be”.
While waiting for the donor, it was finally decided that the girl would be treated with an additional chemotherapy protocol. Another six months in the hospital, and maybe longer, waiting for a donor. And with each subsequent cycle of chemistry, complications in the treatment are involved and the child’s organism becomes increasingly weak.
See Ami well
It is October 13, Polish Bone Marrow Donor Day. Amelia’s mother records an appeal in the hospital: It can be anyone, it can also be your child (…). New registrations are the only chance for Amelia and the others who need a bone marrow transplant. Each of us can help. Anyone can register. What I sincerely ask all of you …
Currently, it is 11 months of intensive treatment. One of the November blog entries begins with the words: Now I look different.
Amelia never liked photos and now she doesn’t like them even more. My guess is that she doesn’t know exactly who the 13-year-old girl in the mirror is. Cushing’s syndrome is a group of symptoms occurring in the course of chronic steroid therapy in hematological diseases. Buffalo neck, full moon face, sticky legs and arms, and often a little donut on the belly and a few kilos more. In addition, numerous blue stretch marks on the body and thin, dry skin with a tendency to bruise. Yes, my sick child looks different, but to me she is still beautiful. But what I would like most is to see Ami healthy.
Will Amelia get her chance? It depends on whether its “genetic twin” will join the base of potential bone marrow donors in the near future. Because so far we only know about him that he is not yet registered. Meanwhile, the drug for Amelia may be just you.
- Register as a potential bone marrow donor: www.dkms.pl/amelia
- Share Amelia’s story with others and encourage them to register: www.facebook.com/dlaameliidkms
WHAT SHOULD YOU KNOW?
Before registration:
- A person permanently residing in Poland, aged 18-55, generally healthy (without chronic disease) can register to the base of bone marrow donors of the DKMS Foundation.
- The registration process takes a few minutes and is painless. It consists in making a smear on the inside of the cheek with special sticks.
- The registrant does not bear any financial costs.
After registration:
- Only one in 200 registered people becomes a de facto donor.
- Before a potential donation, the health condition of the potential donor is thoroughly verified to make sure that it is safe for him or her. The recipient also has to get cells from a healthy person. The donated stem cells regenerate within 2-3 weeks, we lose nothing.
- The mere removal of bone marrow stem cells is a fairly simple medical procedure. Most often, because in 85%, blood is drawn from peripheral blood. In the remaining 15 percent. it is a sampling from the iliac plate under general anesthesia.