Month: May 2018

In a field… part 2

Artistic talent and creativity are two gifts I admire.  When those two gifts are combined with thoughtfulness and kindness, the possibilities are endless.

A caring colleague saw Kelsey’s take on the phrase that matches her spirit animal, Uni, last week: in a field of horses, be a unicorn.

She took it upon herself to create the above image for Kelsey.  I was beyond touched by the gesture and the beautiful image that now captures Kelsey’s new catchphrase.

Kind and caring individuals surround us every day.  I am grateful to work in such dedicated and sweet community.

Thank you for depicting Kelsey’s image, inspiring her artistic talents, and reminding her that prayers and thoughts extend beyond her imagination and her dreams.

We  will frame this and hang in a location of Kelsey’s choice.

Kindness…pass it on…

In a Field of Horses…

In a Field of Horses, be a Unicorn.

May you always be a Unicorn, following your spirit animal …

Teacher Appreciation

There are many amazing facets of my daughter’s teacher this year.  She is thoughtful, kind, generous, and loving.  The students in her room feel loved, appreciated, and special every day they are in her care.  You sense it in the room and hear it in the children’s words.

This weekend, Kelsey came home beaming with pride over the “special” day that would happen on Wednesday.  Though it may have been an absolute coincidence to couple stuffed animal day (she’s bringing her Spirit Animal, of course) with a snack on Wednesday, the fact that this would be happening on Kelsey’s needle day made her smile all weekend long.

“This will give me something to smile about in the morning rather than cry my eyes out as usual,” she said, loud and clear.

To all of the teachers who brighten their students lives with thoughtfulness, empathy, and dedication, I thank you.

Mrs. P, YOU have been a remarkable influence on my daughter’s life this year.  It is no surprise she idolizes you, but more than that, you have given her reasons to smile often, inspired her curiosity, and fostered an environment that respects all learners.

Mrs. P, YOU ARE OUT OF THIS WORLD!

Mrs. P, we are grateful for you and all you have done this year for our girl.

Nanobots

The bond between a brother and sister can be tough at times. Various interests, ages, and hobbies do not always create a harmonic environment. We work very hard to foster respect, love, and friendship regardless.

Kelsey’s brother worries about her.  There is no question about that. Although he has seen her at her worst, he also sees her at her best. They compete, they laugh, and they play together at times in a way that warms my heart.

Every once in a while, I worry that he feels less special or just “less” because he does not have a medical condition that requires the monitoring and lengths we must go to for his sister.

Then sometimes, I really that he does understand and he is more concerned than I realize.  He was reading a non fiction text and surprised me with the text from above.  He said, “Mom, can you please read this?”

When I read about nanobots that can cure diseases, I stood still and listened.  “Mom, do you think this could be the cure for Kelsey that we are looking for?”

“Whatever it takes,” I thought.  Maybe someday big brother…

Here’s to hoping, wishing, and praying.

Strength

The brave words below are from a young woman with dada2 (Kelsey’s PAN is a manifestation of dada2).  She is an inspiration to me, and I am proud and honored to share her words with you.  Thank you, Anna Maria.

My name is Anna Maria. I’m 24 years old and in February, I had a bone marrow transplant.  I can say what I experienced and what I live by myself. In July 2017, I was told that I had to undergo bone marrow transplant therapy and that I would have no other solutions other than that.

I found myself facing two paths: one was to decide to continue in the disease which would soon bring me to death, or decide to fight for a living and then undergo the bone marrow transplant. If I am still here, it is because I have decided the second way. When I was told all this, I was very scared because it meant postponing my degree, university exams, enrollment in specialist university, the carefree age, the outings with friends, and many other things.

I cried a lot, then I told myself that without health and the transplant, I would have renounced all these things and much else, I would have renounced life itself. In short, I would have faced a few years, always spent in hospital to feel bad. While with the transplant, I would have made some sacrifices in this first year, but then I would have had a beautiful life and I would have enjoyed all the things I lost.

So with courage, I took this choice or the choice to live. I immediately understood that it was an important step in my life and I am very happy with this choice.  I will always keep it in my heart and I will be able to tell it to others. Of course now my path is not finished yet. I’m halfway, but I can tell you that I’m very well. I came to a point where the white blood cells were no longer produced because the lymphocytes had taken over.  I suffered from very strong vasculitic episodes. All these problems had invalidated my life, I was not really well.

Transplantation is the best weapon currently available to eliminate vasculitic episodes due to DADA2 and is strongly necessary, if not indispensable, to refurbish the immune system.  To give courage regarding the issue of hair loss: I obviously lost them too, but if I have to be honest, I find myself much more beautiful like that!

After about two months from chemotherapy, my hair is already growing back. We who face all this, the pain, the suffering, we are special, and we are brave.  This gives us a march more than the others. I can tell you that I’ve never been so happy in all my life.