Jacinta, the brave patient

Saturday per month, the local patient association in Argentina, ALMA, organizes
a meeting with different activities for patients with CML. Some of those
patients belong to the CML Alliance Program I carry out, so these meetings are
a great opportunity for me to know in person and have a direct contact with each one of them. Sometimes, I meet in person with
some patients for the first time after one year or more of calling them on the
phone, so it’s a strange, beautiful and funny experience for all of us the
moment where I see the patient for the first time and they see me.

Today, I want to tell you about my first meeting in person with
Jacinta in ALMA. Jacinta had just recently entered the program. Let me tell you
about this little-adult girl. Jacinta lives in Buenos Aires Province. She is a
12-year-old child who has CML and lives with her parents and her sister
Soledad, who is in charge of her treatment. I was very touched because Jacinta
is very young to have this diagnosis, but deep inside she is an adult full of wisdom
in her soul.

Her parents don´t understand much about the disease and the treatment procedure
month after month, so Soledad has to be in charge and take care of Jacinta as if
she was her own child. She is involved in the initiative
to help her sister with the disease monitoring,
medication supply, etc.
In addition, Jacinta has Celiac Disease, so she can´t eat a lot of things that most children eat every day. In spite of this,
she has adapted very easily to the treatments for both diseases, and she doesn’t
complain about her life, she keeps on feeling
happy every new day.

The moment we met, Jacinta was at the meeting and she hugged me very
enthusiastically, even though she didn´t know me well. From the start, she
always trusted me and believed in Max much more than other patients. During the
first few CML Alliance phone calls, I told Soledad about the Max team and she
was very grateful for our support, but I hadn´t had the opportunity to speak
with her or with Jacinta in person. During the ALMA meeting, when I told them
that Max had different representatives in other parts of the word, and I told
them Max´s story, Jacinta opened her eyes with amazement. She was very proud to be part of
the CML Alliance Program. In fact, she told me that she would like to become a doctor when she grows up, to
help other patients.


takes her medication every day without complaint and she follows her physician´s
instructions very well. She was a good example of goodwill for other patients
in that meeting.

This month
I had the opportunity to meet Jacinta and her mother again at the ALMA meeting,
which was full of people. Jacinta
assisted with her mother this time because Soledad (who was pregnant) was
having her baby. When I found her she automatically stood up from her chair and
she ran across the room to hug me as usual. She was very happy to see me and so
was I.

I gave her a “Maximo and the Big C” book and a Colors of Hope Calendar as
Children’s Day presents, which in Argentina was celebrated the day after. When
she saw these presents she showed a lot of gratitude and went back to her chair,
because she was hungry and she had to eat her special food without gluten. After
a few minutes, I saw Jacinta in the hallway by herself reading the Maximo book.
She had just finished it. She thanked me again many times and we hugged.

Now, when I call Jacinta
and her family at home I do not only talk with Soledad, I also talk with Jacinta and her mother. The CML Alliance
Program and ALMA meetings allowed Jacinta´s mother to become more active in her
daughter’s treatment, and Jacinta to feel that she has a place where she can
feel supported, sustained and where she knows that we are there for her.

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