Month: November 2018

Giving

Giving can be a challenge.  Giving of time, giving of money, and giving of energy takes a toll on us all at various points.

Giving Tuesday was yesterday and our efforts alone on this charitable day raised almost $7000 for our non-profit organization.

Perhaps this support (following our most successful gala to date) came at a perfect time as our patience and faith have been tested during the course of the past months in virtually every way.

Then we saw the smiling faces at the gala of those who cared enough to support our efforts.  On giving Tuesday, we surpassed our goal by 3353%.  Though it is not the million or so we need to support the research efforts necessary to move research and therapy options forward for dada2, every dollar counts.

Our first gala came at a time when Kelsey’s arms were full of inflammatory markers and inexplicable red nodules.  Our third gala came at a time when round, red lesions lingered even with intense treatment and therapies.  We are trying to remain strong and appreciate all of the many who supported us over the past few weeks with words and donations.

We ask you to mark your calendars for November 23, 2019 and hope that our fourth gala does not have us facing so much uncertainty.

Gratefully,

Kelsey & Kelsey’s Kaleidoscope, Inc.

Wrong

Tonight felt wrong.  We went to bed with a child who could not walk or get up from the couch.  We were unable to receive medication due to a holiday, we continue to wait for a prior authorization for another, our incredible doctor has fallen ill herself, and we are just plain tired.

We are tired of feeling wrong and tired of not knowing why.

We seek answers but find that our decisions can be wrong.

Our hope drives positivity, but it too has a breaking point.  Sometimes our hope overshadows the truth.  Sometimes the truth takes a hold of our hope.

A morning judgement call felt wrong.  Instead of fixing it immediately, it was an all day point of worry and concern.   If anything, we always trust our instincts and feel we do right by our child.

Today, we were tired and tonight we are afraid.  We were blinded by what we hoped we saw and scared of what no one can tell us.  We feel it is wrong that the biopsy results have still not been conveyed to us.

Our medical team supports us and we are incredibly grateful to them for that care.  We are grateful for our committed doctors and their evening responses to our concerns.  We just don’t feel they know enough to ease our fears.

That feels wrong.

We are not always sure what is wrong, but we certainly wish we could make it right either way.

Rare

Rare is defined as “marked by unusual quality, merit, or appeal : DISTINCTIVE” and trust us, the life of a rare disease can be described as distinctive.

The rare and beautiful wonders of the world capture a sense of peace and awe when viewed.

The face of a rare disease or a young woman working her way through childhood with a rare distinction is heartbreaking.

A relative recently stated this journey as the unimaginable.  That would accurately describe the acute pain and uncertainty of these inexplicable lesions and the new limp that Kelsey is just smart enough to conceal from anyone who does not know her well.

Rare is never a word we want to use for our child’s childhood nor our child’s health.  Yet, here we are stunted with emotion for the lack of understanding these lesions bring to some of the brightest minds in the world.

Rare is lonely, rare is an emotional drain, and rare feels distinctively raw right now.

Please support our efforts and help us raise funds and awareness at our third annual gala: TICKETS.

Poison Ivy

The marks and the mindset.

They just won’t go away.

We try to remain calm.  We try not to bring them up, yet monitor them closely.

When planning for parties and treats, Kelsey asked if anyone had an allergy.  We talked about allergies to food, animals, and other environmental triggers.

She kept going asking if everyone was allergic to poison ivy.  We kept the discussion alive with stories from mother and father through the years.

“Dad, I must take after you,” she said.

“Have you been near poison ivy lately?”

“I must have been since these marks do not seem to have any other answer.  They must be poison ivy, right?”

If only.  We biopsy to learn.  We pray that we do.

This week, we meet families from around the world with dada2 and PAN.  We search for answers and thank you for all of your support.

To continue supporting our efforts, please do not forget your tickets to our third annual gala: TICKETS.