cure – Kelsey's Kaleidoscope

Mothers

Typically in the moments after giving my child a needle of life-saving medication, I dash upstairs both to run away from the nauseous feeling in the the pit of my stomach and to block out the shrieks of pain caused by my injection. I usually put on my jewelry for the day and take a moment to breathe. It’s our routine, and we all try our best to make it “ok.”

When Kelsey chose me to inject the medication, I did not think I could handle it. Though we were both trained, my husband started the process first and seemed so much more competent and strong than I thought I could be as he injected. I was the comfort and that role suited me fine.

Today’s injection was a particularly tough one. In truth, perhaps they all are, but I often run away instead of having a moment to reflect on it. As I sit to find strength in the joy of laughter now surrounding me, Kelsey comes over to me.

She sees my face and touches my cheeks with her hands. She says, “Mom don’t be sad that you hurt me. You did hurt me today, but I know you love me and that’s why. You just want me to feel better. Ok? It’s OK Mom.”

OK? Is it? The truth is, it is not really OK. It is not really OK because my child’s presence to offer me calm is the reverse of what should happen. Her gentle smile and sweet touch leave me with no choice but to smile back at her.

As any mother knows, when your child asks for you, there you are. Those are moments when inner strength and pure love take over without knowing how you do it. You just do it. You find a way to be ok.

Mothers, I want to thank you for all that you do. I would like to thank my mother especially because there are many things she “just does” now and those that she always has. During times when I am not sure how I have made it through a rough day, week month, or year, I sit back and think, I did it because I am her daughter.

I hope someday, when a cure is found and my daughter is thriving, she will look back and see a reflection of all of her strength, all of her courage, and all that she has done in her life to help me be OK.

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4/5/18 – St. Charles Borromeo Church Hall – 7:00 PM

Venom

Field trips are a time for fun and discovery in elementary school. Kelsey went on her field trip today and her father was able to accompany her. He was proud to share the day with her.

Throughout the day, I received pictures and updates of the excitement. They had a wonderful time.

One memory from the day stuck out regarding inquiry and discovery.

The curiosity of snake venom led to a discussion with a museum employee. The knowledgeable exhibitor shared the common and less known uses of snake venom. It has led to scientific breakthroughs and enhances medication.

Kelsey looked inquisitively at her father after hearing these words and said, “Dad, snake venom helps make medicine. Did you hear that?”

“Yes. Very cool,” he replied.

“Snakes might help me with my disease someday? What do you think?”

A girl can dream…

Snakes… though I know little about them, I hope we can do better than venom.

Designer Bag Bingo ~ April 5, 2018

St. Charles Borromeo Church Hall * 175 Stagecoach Rd.* Sicklerville, NJ 08081

7:00 PM (Doors open at 6:00 PM)

$30 for 10 games, Raffle for baskets

Speak Out. Advocate. Care.

Tonight, I consider our journey one year ago and where my family sat one year ago, five years ago, seven years ago. I think of the connections made in Bethesda last year at The Inaugural International Conference of the Deficiency of ADA2, discovering other families who face the same journey.

I remember each of you. I remember your stories. I hope that you continue to speak out to raise awareness and help in our fight against orphan diseases, dada2, and PAN. Here are two stories that were shared during that time.

Please join us on November 24, 2017 for our 2nd annual Gala. Tickets can be purchased here.

The Warrior

She does whatever she seeks.

She achieves whatever she sets her mind out to do.

She is strong, powerful, and fierce.

Soft on the outside but tough as nails inside.

She perseveres.

She endures.

She is kind.

Wise beyond her years, she stands tall and proud.

As she and I stood still in Warrior Two pose, I smiled as I watched my strong, fierce warrior whose strong exterior fools the world with the inner pain and angst she faces.

But the joke was on me as we completed our workout and she said, “Mom, you remind me of the warrior because you are strong and always reach your goals. I’m so proud of you.”

I guess the apple doesn’t fall far. I was left speechless.

To my warrior and greatest goal yet to be reached, we pray, hope, and continue to research a way to cure your warrior body’s inner battle.

Five Years Ago Today, Another Flare to our Dismay

This week life seemed to be back to normal for Kelsey. Her spark seemed to reignite and her happiness in all things was evident everywhere we looked. It was glorious to see the pain fading away from her face.

When Santa came down the street equipped with both candy canes and dog biscuits, she jumped up and down squealing, “This is the best day!” She meant it. It had been months since that glow lasted an entire day.

It was short-lived. She woke up with a fever in the morning and the cycle began once more. It was not alarming high and her joints seemed to be unaffected. She became hysterical at the notion of a visit to the doctor. I could not blame her. I rubbed her back calmly, wanting to scream at the top of my lungs.

At first, we hoped this fever signaled your typical ear ache or throat pain, the kind that all kids get at one point or another. We do our best to cover all bases before we explore a potential flare. It is becoming exhausting.

Sunday morning presents a certain struggle for medical care, but we wanted to rule out the common ailments before we spent another day in an ER.

After relaying all necessary information to the doctor (a bit tough to do at this point on Kelsey’s behalf), he examined her and noticed no redness or inflammation anywhere. Kelsey’s heart raced and she wondered why that pink medicine was not prescribed. I squeezed her tightly because I was not sure what else to do. It is rare that I sit at a doctor’s office and HOPE to hear, “yes, there is an infection.” Yet, in that moment I realized those were precisely the words I wished to hear.

Instead, I came home with a heavy heart and worry that goes beyond words. There is so little known for PAN right now that when the regular is ruled out, the scary stuff creeps in. What was supposed to be a fun-filled and festive day in Philadelphia turned into one where I wanted to just crawl back into bed.

For Kelsey’s sake, that is not an option.

I find strength and start making phone calls. The dialogue that follows is too routine theses days. I sit with my stethoscope, waiting and monitoring. Hours pass. I try to stay hopeful and calm.

Recently, that has been increasing challenging to do.

Though the fever went away, we once again had a hobbling child unable to stand straight and tall. She attempted to fake it and fool us out of fear, but her tiny body could hide no more.

To the ER we went and waited again. There we sat in an unbelievably crowded room only two days shy of the five year anniversary of the first time we walked through those doors. It is almost unbelievable.

Today marks five years to the day. I sit speechless. We realize that treatment is not working once more according to plan. That is far from comforting.

We await results. We await blood work. We await an emergency follow up at the National Institute of Health.

While we wait, we call and look for research opportunities and seek help from anyone who can lead us to answers. Five years from now, it is my family’s mission that we are writing a much happier tale.

We sleep a little less, pray a little more, and appreciate the help and support of so many.

Every day deserves to be “the best day” for every child.

The Lies we Tell Ourselves

By: Brendan Connell

As parents, we often tell ourselves lies when it comes to our children. “My kid would never do that.” “It’s OK that my kid doesn’t do that yet.” I am very guilty of this when it comes to Kelsey.

For the entirety of our relationship, I have always been the optimist and Jen has always been the realist. The opposing sides have always worked for us. It’s one of the things that has made our relationship so strong. It’s also what has caused us problems and created tension when it comes to Kelsey.

I always try to say that everything will be alright. When she says her legs hurt or she’s overtired, I make excuses. I say it’s not a big deal. It will be fine.

The reality is that I tell these “lies” to try and help calm Jen’s fears, but to also help myself ignore the reality that is Kelsey’s illness. Focusing on the reality for me would be debilitating.

The reality for Kelsey is that her disease has many unknowns. What is known is that it can be incredibly dangerous. This is one of the things I often try to ‘lie” to myself about. It’s simply easier that way.

The happenings of this past week make it impossible to lie to myself, though. I did try, believe me. When Kelsey complained of leg pain, the “lie” was that the pain was caused by the heeled boots she wore for picture day.

Kelsey certainly made it easier to “lie” to myself when she walked around Storybook Land for hours, likely in excruciating pain, the next day. That night, however, the complaints, inability to walk, and marks were back with a vengeance. I was say, “Everything will be fine.”

The next day wasn’t fine, though. We rushed to the hospital.

The nurses and doctors helped feed into my lie by saying her blood work looked good. They sent us home after six hours of observation. I continued the lie and liked the look of the next day, too. I kept saying, “Everything will be fine.”

The next day, Kelsey’s body made it impossible to lie to myself. It appears that Kelsey took on my worst trait and lied to herself all day. She walked through and endured the pain all day long. but she could not hide it anymore. She collapsed. Her body showed that it was rebelling against itself because of her PAN. Her legs were so inflamed and bruised that Jen called me almost unable to speak from fear. She was ready to call 9-1-1 because Kelsey was so warm, lethargic, and full of marks all over. It was unlike anything we had ever experienced. Time was of the essence.

Three days and many tests later, we were all left lifeless. I could no longer lie to myself. Everything was not alright and will not be until we find a cure. Kelsey will always be at risk for organ failure, stroke, or worse.

So here we are, almost 5 years since we first found our way to DuPont Hospital with Kelsey. We certainly know more than we did then. Though it is not much more.

I still find comfort, as I did then, in lying to myself and saying everything will be alright.

I hope and pray that it will.

We can not do it alone. Please join us in these prayers and on November 25 for a night of cocktails, awareness, and hope. Please click on the link to purchase tickets if you have not already done so. We will be raffling a signed jersey from a Chicago Cub playing in game 7 of World Series today, among many wonderful prizes. Hope to see you there!

Wednesday Worry

This morning, I injected my daughter with life-saving medicine. For two years, I have been doing so. I have lost sleep, weight, and what seems like my sanity. How can I loathe something that in reality helps my five-year-old walk without pain? It is my Wednesday worry and one I’m ready to talk about with whoever wants to listen.

Mary-Claire King changed our lives by identifying the BRCA1 and BRCA2 breast cancer genes that have become household names. Today, I spoke with founder and president of the DADA2 Foundation, Dr. Eugene Chambers, an accomplished doctor and father of two children with the recessive genetic condition DADA2. Along with being diagnosed with PAN, my daughter Kelsey has the genetic condition DADA2.

We are committed to raising awareness and finding a cure for our children and those we have yet to meet. As BRCA has become a household name, so should DADA2. November 11 will mark a historic day as the Inaugural International Conference on Deficiency of ADA2 will bring this vision closer to reality. Physicians, researchers, and families from around the globe will gather to share stories as well as diagnosis and treatment options moving forward.

One phone call today made my Wednesday worry seem less worrisome. I hung up the phone overwhelmed by the unfortunate and fateful nature of our call. With a will, there is always a way…