ITW n°69: Louna - K fighter (leukemia).

Hello,

there are testimonies, which upset you... and particularly grab you by the guts... today it is the case... that of Louna, "a 16 year old cancer patient" as she likes to say. 'write in her breathtaking testimony... 16 years old... the age of carelessness, for Louna it is also the discovery last January of leukemia which she fights tirelessly in her bubble (sterile room), since February, yet her words resonate with so much sincerity, sometimes lightness, these words of a creative cradled by her passion for drawing, the words of a flirtatious young girl, who is full of good tips, and a mind-boggling maturity ... The words of a 16-year-old cancer patient, who gives us the fight of her life with great sincerity. Because yes, it's unfair to fall ill so early, but testimonies like this show you that resilience and strength have a name, this evening that of Louna. We're sending you all the most boosting vibes for the battle against this M...

And as Louna suggests: “if you are between 18 and 51 years old, and in good health, consider donating bone marrow, which is very important for people with leukemia, HERE!! ”

More than ever, Never Give Up

Great discovery.

Let's get started:

Who are you ?

First name: Louna

Age: 16 years old

Profession: High school student

Where do you live: Brittany

Why do you agree to share your story today?

It's obvious to me, I would say that I feel the need. I hope to help teenagers who might be in the same situation as me. When we talk about Cancer we don't necessarily think of young people, it's something we see more frequently in adults, yet many of us children/teenagers are affected by leukemia. So I want to share it, too few testimonies from young cancer patients are available on the internet.

What are your qualities (in a few words)?

Those around me describe me as full of life, lively, joyful.

What are your passions (in a few words)?

I am passionate about drawing

What K (what cancer - grade if you wish / stage ditto):

I have acute myeloblastic leukemia (blood K)

When was it discovered? How old were you ?

in January 2016, 15 years old.

Under what circumstances was it discovered?

At the hospital, thanks to a blood test.

If you are currently undergoing treatment, or in remission (for how long?)

I have been in treatment since the end of February

Can you summarize your (K fighter) story for us ?

I first suffered from mononucleosis in October 2015, an illness common among teenagers which for my part required hospitalization for a week. After this period (1 month), I resumed classes, but fatigue was still very present, fatigue that the doctors justified as normal following mononucleosis. I started getting infections, which persisted despite antibiotics. Many small health problems accumulated over 2/3 months (pimples on the body, dandruff in the hair, intimate problems). My doctor then decided to send me to a hospital to be examined by professionals. They did a blood test and while waiting for the results they sent me to see a dermatologist. After the appointment I was diagnosed with psoriasis which is a skin problem caused by stress. The doctors were just waiting for my blood results before sending me out. The intern and the head of pediatrics came into my room, sat on my bed and told me the news. I had leukemia. I am currently in the sterile sector for my 3rd and final consolidation, the treatments are working well and in 2 weeks all these problems will be behind me, at least I hope so.

What treatment did you have?

chemo: if you have had it: (name of cocktails / number of sessions)

Induction (in sterile sector):

Aracytin for 7 days (continuous infusion) + Mitoxantrone for 5 days (1 hour)

radiotherapy: if you have had it: (number of sessions)

Consolidation #1:

Aracytine twice a day for 3 days (3 hours) + Amsacrine for 3 days (1 hour)

Consolidation #2:

Aracytine for 4 days (continuous infusion) + VP16 for 4 days (1h) + Daunorubicin for 4 days (2h)

Consolidation #3:

Aracytine twice a day for 4 days (3 hours) + Amsacrine for 3 days (1 hour)

operation if you have had one (how long were you hospitalized):

• 10 myelograms (bone marrow puncture which requires sedation)
• 2 general interventions, 1 for a puncture at the knee as well as a 2nd for the installation of the implantable port

What tips directly related to K do you want to share?

(your feeling with the doctor, your good treatment organization plans, anything that seems useful to you ;))?

How did you live the day before, the same day, the days after chemo?

and what were your tips?

During long periods of vomiting, nausea, fevers, I implemented a few tips:

• put an Emla patch before going to the hospital in the place where they will sting (ZIP, CAI, Caté)
• a few hours before starting chemo n don't eat fatty foods, unless you have time to digest or risk having even more nausea afterwards (I suffered from it, it's my fault)
• to get rid of unpleasant tastes in the mouth: apple juice
• To reduce fever, place ice packs on the arms, forehead and upper thighs. The fever miraculously drops with this tip even at 40° (words from a cancer patient)
• always have a bean in the room and toilet so as not to vomit on the floor
• dishes that were manageable despite vomiting: plain fish, rice, pasta, compotes, fruit, fruit juice, bread, biscuits (eat what you want)
• drink a lot even if it is difficult, even if it is difficult to drink sweet drinks which are good and give a little strength

“parallel” medicine, if you have done it (what disciplines, what were their benefits):

a little homeopathy for vomiting and nausea which still helped a lot (Nuxvomica 5ch or 9ch)

What did you do to clear your mind/clear your head (before chemo, surgery & co)?

chatting with my Mom, foot massage (very good when you lie down for a long time without moving), listening to music, watching films previously put on a USB stick watching shows, drawing, doing a little gym or stretching when the is in good shape, climb the seat as high as possible to look out the window at the world moving outside, read a good book, play video games, watch tutorials on YouTube (beauty tips, makeup tutorial , cooking recipes to do when I am cured)

What practical “well-being/beauty” tips can you advise us?

1/ beauty: your essential products (e.g.: creams, varnishes, scars, oils, etc.)

for hydration: a very very moisturizing cream (cerat de galen)

for the scalp: a gentle scrub from Avène to remove small dead skin, then application of Castor oil for more beautiful hair when it grows back

for intimate hygiene (which can deteriorate during treatments): Dakin which can be bought in pharmacies, diluted with water, do not wash with products for intimate hygiene

in make up: work especially on the eyes, trace the eyebrows, buy a small stencil in the shape of eyebrows (available in the Hair & Eyebrows Kit here) / For the eyes I recommend eye shadow (chocolate bar) color of your choice, then a small line along the brown or black eyelashes.

2/ look, (e.g. your favorite chemo, hospital, every day look to feel good):

a pair of light khaki pants, with a woven brown belt, a small pale pink t-shirt, a pretty colorful scarf, fake bangs and fresh make-up. I always prepare myself with music to boost myself (song of the moment: Venice / the lighthouse and the whaler )

3/ daily (e.g. sport, food & co, meditation, reading, etc.)

My daily life is mainly rest when I'm not in the hospital. Knitting relaxes you well. I watch good films under a warm duvet with a good hot water bottle. If I feel a little better I try to do a little gentle weight training and a little walking on a treadmill, but very gently, always listen to your body. If sport is too hard, simply stretching is enough. I pamper myself as much as possible between chemos to revitalize my body between these difficult stages. In terms of food, nothing beats good homemade food. I'm careful not to eat too much fat knowing that the liver has a tendency to play tricks, being quite tickled during chemo.

4/ hair problem (eg: did you wear a wig, scarves, hats)

I bought a wig similar to my old cut and 6 fancy wigs for fun (Milanoo brand). Fringes (Oncovia) to wear with scarves from Amor Lux which are great, knowing that they hold very well. I also have little hats which also come from Armor Lux, to keep my head warm in the house when it's cold. For me, losing hair is really a way to have fun and try out colors and cuts that I would never have worn.

Are you concerned about the views of others, were you afraid that their views would change? What did you do to counter it?

I'm not that concerned about other people's opinions, what I mean is that I'm not afraid of it. They annoy me more than anything else, I would like people to look at me normally or to smile at me instead of looking at me as if I were an alien. So to blend in, I put on makeup, put on a wig and that's it. It's crazy, when you're in good health you absolutely want to be noticed, and when one day you get sick, and that's the case, you want just the opposite!

What are the “nugget”/footed phrases (that you remember) that someone said to you during K and that you could have avoided?

Phrases from those around them, such as “I need you”, in my opinion, it was mainly me who needed them and I did not have to respond to their needs.

How did your loved ones support you?

By being with me as much as possible during chemotherapies and especially by making me laugh during rough times.

And what advice could you give to loved ones who accompany a K fighter?

Some advice for people who have a friend/teenager with Cancer: it's not always easy to see people during chemo in the hospital, so if the sick person refuses to see you, you need to be understanding and not forcing too much. Be calm when you visit her so as not to tire her too much and be there for your friend as much as possible, get news, support him, and accept his mood swings. This disease is difficult, and it is not easy to deal with this injustice.

Do you find out about K on the internet?

yes, but not too much, you have to know how to balance

If so, does it make you feel good?

it depends, you shouldn't hang out too much on the internet, you can find bad information there which can undermine morale

If so, what would be the useful (internet) links that helped you during K?

the Oncovia site, which gives lots of advice and sells great products for people with K

What has the K changed in your life...?

(for example: your vision of the world, your priorities, your essentials, refocusing those around you, in your work, your philosophy..?)

I reoriented myself towards an Applied Arts sector (STD2A) and I was taken out of 170 people! It was a big victory for me who prepared my file in a sterile room (to discover Louna's talents, see the bottom of her ITW)

Free field ;)

tell us what you want (which might not be in my questions):

It's difficult to have such an experience when you're 16 years old, I was cut off in my momentum which was going towards freedom, towards independence. Instead, I find myself watching the world continue to turn without me, I stay inside my bubble which tries as best I can to protect me, but sometimes it is not enough. I have the impression of being 50 years older, of not knowing the follies of youth. I feel old, dragging my body which has so much difficulty moving. I feel worn out, too much suffering has accumulated in my little heart, too small to contain it. A heavy load which will undoubtedly accompany me all my life. I grew up far too quickly, learning life too quickly, which I would have preferred not to know. Remain in the blind innocence that all adolescents experience. No one deserves to experience something like this. So protect yourself from diseases, because it sucks. Words from a 16-year-old cancer patient.

PS: if you are between 18 and 51 years old, and in good health, consider donating bone marrow which is very important for people with leukemia, HERE!!

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Many thanks Louna for your precious testimony, your inspiring life force & your essential tips.

If like Jacqueline you want to tell your story and share your tips, go here , send me your questionnaire and 1 photo of yourself so that I can draw you ;) to: interview@mister-k-fighting-kit.com

Many of you send me your testimonies, thank you for your precious trust, for this same reason, the broadcasts of your interviews will sometimes be broadcast in several months, but know that I keep and transmit absolutely ALL the testimonies that are sent to me, Thank you for understanding.

Please note that I do not retouch any Interview, they are completely free, it is your freedom, your story, I just add my personal touch with the illustration, they are delivered as they were sent to me ;)

NEVER GIVE UP!!

Charlotte

Louna's drawings: