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.
We still await lab results and decisions, we remain hopeful that daily injections have allowed most marks to subside.
Last week was tough on us. Tough to watch your child look to you for answers you do not have.
Tough to stay strong despite your fears.’tough to start your day with an injection, even if you’re the one objecting. I can’t imagine being the one on the other end.
Self conscious Kelsey did her best to smile and remain strong. Though she saw the marks growing deeper in color and size.
She walked in to her after brushing her teeth with generic Eururin. It reads HEALING OINTMENT.
“Since the needles are not working, maybe this will? It says it is healing ointment? Do you think it’s with a try?” she inquired with such hope.
”Maybe this will be just what we were missing,” I reply with doubt but marvel in the quest to find answers any way she can.
To hope and healing ointment…
When you come home from two days of testing and consultations from the NIH with a positive outcome, you smile. Life is good. When your child wakes up the next day with new marks, you feel disenchanted. You feel like this cannot be happening (again).
You hope these new marks are just bug bites. You were just tested. You were just given a positive report. You send the pictures anyway and await symptoms or the onset of something else. You are in disbelief.
You shed a tear the next morning when the marks spread.
You start to worry more once the marks look like those you saw two years ago when lethargy and pain took over your daughter’s tiny legs.
You see the spread, you see the onset, you fear everything in front of you.
The village of support that surrounds you allows you to get through this hurdle, test appropriately, and inject as necessary.
You are scared and you are unsure of where this leads you.
Daily injections return to bring a sense of normalcy to an otherwise abnormal state of affairs.
You hope, you are grateful for all the doctors you have on standby, but you cannot help but feel … something words cannot truly describe.
The routine response to 17 vials of blood taken to check, maintain, and sustain still makes a parent weak.
We leave the National Institute of Health Sciences feeling tired and breathing a few sighs of relief. Two full days of testing, talking, and questions is tough to endure. The entire visit was kept exciting because, “I am going to meet the Phillie Phanatic,” Kelsey told anyone who would listen.
Jake Arrieta of the Philadelphia Phillies had impeccable timing to offer his suite for a charitable night for Kelsey’s Kaleidoscope, Inc. All day long, sporting her Phillies shirt and hat, Kelsey remained positive and focused on the game and a chance to meet the Phillie Phanatic. Thank you to the Arrieta family and our generous donors for making the evening full of fun. Though they did not win the game, we came home positive and grateful after a long two days.