Evaporation

Energy, like all things, has a limit.

Mental toughness and maintaining our “normal” is always our desire.  This week, it seems that our energy levels are depleting and evaporating by the second.

A struggle to walk for a child and daily injections have taken their toll on our family.  We still await answers and we struggle with the wait immensely.

We fear the unknown and wish our fears could evaporate.

Meeting families from around the world recently with the same struggles as ours was both humbling and scary.

Their stories are the same, their symptoms echo Kelsey’s, but underneath the surface right now, something is happening inside of a tiny body that cannot tell us why.

Another medical challenge increased its force this week and our limits are being tested.

Our energy has evaporated.

We hold on to hope but fear it will evaporate, too.

Overload

Daily injections, steroids, and three other medications have merely helped instead of ridding us of our current worry.  New marks appear and we are left with more questions and lingering concerns.

The weeks have been long and tough to take.  The spirit of the holidays has kept up grateful and hopeful of all that we do have.  It has not been easy to endure at all times.

…not easy at all.

Then, this evening news hits of another potential worry and to quote Kelsey through some of her pain over the past few weeks, we “just can’t.”

We pray this holiday season offers you peace and joy.  We pray for resolution and answers as we work through ours.

Emotional overload is an understatement.

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.

Treats Today

Halloween is here.  I wish it was a trick to tell you that the red marks are back with a vengeance.  The large circular spots fighting continue to fight their way out.  Flesh color inserts can be alarming to us, yet Kelsey seems to be keep on smiling.  Without a true understanding, we continue to feel perplexed and question the right next steps.

Two new medications have not seemed to bring change.

What is next?  What is right?  What is going on inside this tiny little body?

We are almost numb to the marks… almost.  At the very least, we try to be to keep calm and steady for Kelsey.  Cool weather have kept them hidden from view to most, and we are grateful for long sleeves and leggings.

With the thrill of Halloween and movie options out, we began a dialogue regarding movie genres.

Most adults like a little thrill, and some kids do too.  In conversation, it was clear that though certain genres interest some, sometimes reality is scary enough.

This Halloween, we hope for all treats.

To enjoy a night with the Amazing Kreskin in support of Kelsey’s Kaleidoscope, treat yourself to our third annual gala.

Please follow the link here for tickets: TICKETS

Lucky

Lately, we’ve been trying to find ways to be happier and savor our family time together.

Today, one family member sat in the hospital after a terrible accident and one patient who suffers with Kelsey’s disease awaits amputation.

Today, instead of finding ways to be happier, we embrace gratitude and pray for one of our biggest supporters to come home safely and one of the first diagnosed patients to count his blessings with less toes than yesterday.

Lucky, we are.

Help support our cause at our third annual gala with the Amazing Kreskin.

Gala Tickets

 

A Depiction of Sadness

When we find drawings under our daughter’s bed on a random Thursday, we do not know what to do except be honest, talk through the worry, and understand that though it is a weekly reminder for our family, it is a constant worry for the one who endures.

To all who endure and to those who support them, sadness…

Canine Comfort

Wednesday worries always get us. Screaming a special word and enjoying a treat following have become routine.

Our fur baby typically stays away because we felt that best for all.

“No, not today,” he seemed to say this week…

Kelsey took her spot as we prepared all necessary items.  Our pup whimpered and stood by her side.  Guard dog sensed it was time and continued to whimper.

She pet him and told him it would be alright.  He would not leave her leg or her side.

When I made my way over, he stared at me and then took my typical spot, whimpering and crying a bit as he did.  Was he reading our minds?

The duration of the injection and prep was met with his cries of woe.  We all marveled at how we leave him out of the routine, and today, it was clear he wants to be at Kelsey’s side and involved in the routine.

”Lukey is my true spirit animal,” Kelsey said.

He sure is…