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.
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
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.
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…
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…
The weeks and the lesions have been tough on Kels. The more she learns, the less she understands. The less she understands, the more questions she asks.
Those conversations take an emotional toll on us all, even with our overall positive outlook.
This week she journaled, “SLEEPOVERS help me forget my needle.”
Kels had her first friend sleepover this past weekend, and she has been talking about its splendor for days, too.
Tonight she thoughtfully stated that even though she loves her room, being in another room helped her forget about her needle and her disease.
Though no good amounts to most sleepovers, this one yielded huge positives for Kels.
A bedtime discussion brought a family resolution to the lingering question, what can I tell my friends?
How about the truth?
With that, this note was composed. Tears were shed and my brave girl read this aloud to her class.
We have been awaiting news and answers to the new lesions appearing to multiply and invade Kelsey’s skin. Marks seemed to multiply rather than fade and new fears crept into our minds with each new spot.
A difficult realization was that the very cause of these marks could have been potentially avoided. We are grateful for all doctors who care for our daughter and feel incredibly proud to know they are on our team. However, sometimes a team disagrees and decisions must be made.
Two years ago, a discussion of antibodies developing from humira was broached. It was shut down almost as quickly with opposing schools of thought.
Two years almost to the day, the marks reveal antibodies are causing the lesions.
The very trusted medication that does so much good for our daughter has also decided to work inside her as an opposing force this time.
We’ve felt anger and anxious throughout the past few weeks. But on we must go, though the marks still look fierce and on we must go, adding new ways to correct and change course.
Our quest for more information and more answers remains strong and our understanding wanes.
The story behind the smile… the story behind the photo is one of a child with a rare disease on the first day of school who found excitement covered by fear.
In this photo, large red lesions covered the skin of an otherwise smiling face and joyful young woman. A sweater on the 92 degree day was worn to mask the red posts along with high socks and a long dress strategically placed around the worst of them. Her positive and calm demeanor were met with anxious feelings and fear about what the other children would say if they saw.
She told kids they were bug bites. Then she was sick of that story so she said they were rug burns to others. Overall, she was scared. She told a story because she did not want to get into her disease with everyone (so she said).
The lies she had to tell others to feel confident on her first day of school were challenging to hear as a parent.
Consequently, the parents of a child with a rare disease felt anxious and were at a loss for words. Their brave child embarked on a new year in a way they never experienced before.
Sometimes the smile a child is wearing is not reflective of the feelings they face inside.
The story behind this photo is one we will not forget, but one we are proud to share to remind us all to share a kind word to make someone’s day. You never know what is going on behind the smile.
Ever hopeful for a year with pure joy and excitement, we go to bed with more inexplicable marks and a child afraid for anyone to see them.
A morning dose (we pray) will do the trick as we send her off to second grade.
We pray her day is a joyful one.
We hope her dreams come true.