New View for PAN – Page 28 – Kelsey's Kaleidoscope

Courage when you least expect it

“Strength and growth come only through continuous effort and struggle.” -Napoleon Hill

Almost exactly one year ago, my mother convinced me that silence was not the answer. With the help and guidance of dear family members, Kelsey’s Kaleidoscope, Inc.:A New View for PAN was born.

Part of me feared the perception my family would receive after we revealed the rare disease in our home. Part of me feared that people would look at Kelsey differently because she has a rare disease. The funny thing is, if anything, people are more kind and generous than I ever could have dreamed.

Last week, the ten-year-old student who joined forces with his family collected $300 at his stand. He stood in a crowded room full of parents, families, and students who were there to understand the world of business: how to create a business model and successfully see it through. As I looked around the variety of business models and concepts, they were very similar in every single way.

Only one had a group of family members adorned in pink, a band of bubble-gum goodness. Selfless, sweet, and kind. Only one student that night showed the world that his family raised him to give back, expand his horizons, and fight for what he believes he has the power to change. He did not make a single penny for himself or his time, but he was beaming with pride from ear to ear.

That $300 is going towards a cause far greater he can likely imagine. We have had some exciting happenings over the past few weeks. Soon, we will embark on our mission to find the cure. Every single penny earned and piece of bubble gum sold will go towards finding that cure.

What started one year ago as a dream is turning into reality. If not for my mother supporting me and urging me to speak about the fight I was only living inside, we would not be on our way to finding a cure.

Today, the kindness, the generosity, and the selfless acts of others have helped us begin that mission. When a ten-year-old young man “gets” it, you can not help but get choked up inside.

Courage has the power to heal and change lives. A ten-year-old and his family showed me how much good there is in the world around us. Sometimes, we have to open our eyes a little bit wider to see it.

Selling Kindness and Giving Back

This evening, soon after injecting the second medication of the day, we will smile and walk around a local “market.” This market is a school project for future business entrepreneurs to reveal a business plan and “sell” a variety of products to reflect their business model. It is a fabulous learning experience. However, there is much more to this market for my family.

About a month ago, one of Kelsey’s teacher reached out to me regarding this event. She wanted to let me know that her ten-year-old son would be participating in this event and donating ALL of his proceeds to Kelsey’s Kaleidoscope, Inc. Maybe it is not the best business model, but it certainly a child who understands compassion, charity, and community.

Touched. Grateful. Overwhelmed by kindness.

The tumultuous nature of the past few months has also created a natural break in fundraising. However, my heart melts to know that a ten year old young man did not stop thinking. This incredibly generous ten-year-old boy has never even met Kelsey.

To Kelsey’s teacher for sharing Kelsey’s illness with her family and raising a young man who would think more of someone else than of himself, thank you. To a young entrepreneur who took it upon himself to bring a bit of sunshine into the sunshine of our lives, thank you. If you happen to stop by the event this evening and inquire about Kelsey’s Kaleidoscope, Inc, thank you. It is the support and the spirit-lift from those around us that keeps us strong even when we feel that we are hanging on by a thread.

The sleepless nights, the relationship stress, the avoidance of public settings and birthday parties due to the vast array of germs, and everything else good and bad that January has been comes to an end this morning as the sun rises to February.

This month looks hopeful and bright already.

Thank you, February and thank you to an amazing ten-year-old and his family for sharing the love…

Six and Full of Sunshine – Happy Birthday

Six years ago, I awoke full of joy and excitement over the soon-to-be arrival of my baby girl. 2011 was the best January of my life. Hope sprung eternal, snow piled high, and a true gift to our family was born.

Kelsey’s sweet face was alert and full of wonder. Her tiny hands clutched our fingers. Her brother stared at her with curiosity and awe (maybe a tinge of jealousy, too).

We brought Kelsey home to a nursery of brown and pink flowers, infused with butterflies and symbols of love. Her name was rhythmic and powerful. She was strong from the start. It seemed that she was everything I had hoped for in a baby girl.

Some how, some way, Brendan and I were unlucky enough to pass along a condition that depletes us at times. We cannot help but remove our rose-colored glasses and face the facts. The truth is, Kelsey makes it easy to wear those glasses most days. If you look at the world through her eyes, it is a place filled with wonder, beauty, and kindness.

Every morning, there is a true glimmer of hope that wakes up seemingly full of more sunshine and happiness than when I kissed her goodnight. Her name is Kelsey and though her six-year journey has been arduous, grueling, and a daily struggle, she makes it easy to forget the health woes and worries. One ecstatic smile can easily replace the worry. You just feel better being near her.

When you speak to Kelsey, you can lose sight of how young she is because of the depth of her understanding. The complexity of her vocabulary astounds you, and you remind yourself that her life experiences have given her a perspective that most others simply do not have. She is always looking on the bright side. Sometimes I actually find myself lost in a smile and she will ask me why I am feeling so happy. My answer is simple, “It is because somehow, you are mine.”

Every day I am so grateful that she is mine. Heartache and insurmountable worry aside, she is the “sunshine in my pocket.”

She involves other children in play, never wants to leave a friend out, and always thinks of others. Sometimes, our dinner conversations are more about how she can help a classmate (with something the person likely does not wish to be helped with…) more than they are about herself. She is just remarkable. Even her choice for plate color and peanut-free treats for school were all about the other kids. She wanted yellow and pink so the boys and the girls would be happy. Then, she picked out DEEP BLUE plates. The girl who loves pink and purple chose dark blue. I had to ask for a rationale. “Mom, the boys will not want to eat off of a pink plate.” That is Kelsey. I bought pink plates anyway.

I bought you those plates because today is your day baby girl. Bring in those PINK plates and have your PINK cookie with a huge smile. Soak in the songs and smile as only you can.

Today, my wish for you is a year that does not try to break your spirit like the last few months of five did. You did not let it, and I will make it my goal to let your positive spirit guide mine today. There is nothing sweeter than watching you smile. You are jumping for joy today.

Happy sixth birthday! You are my girl, my sunshine, and my strength. Stay strong, compassionate, and positive. May your every wish come true.

Fatigue

The chill of January’s air captures the spirit of melancholy and angst I often feel during this dreary month. It should be a month of renewal and a kick start to new and better things. Though I try my very best to hold on to those signs of renewal and the feelings of bright beginnings, I am also deeply conflicted.

I think back to the woes that January has brought over the years and the new struggles of January present.

Kelsey’s favorite doctor recently asked me how I was doing. She really meant it, and her soft gaze opened the doors of honesty. She really cared and we had a moment that was authentic and real.

I am always prepared and ready for the Kelsey questions. I answer them thoughtfully and carefully. It was much harder to talk about me. The truth is that every new pinch and pain from my daughter tears a little piece of happiness away from my day. I know that we will get through this and this, too, shall pass. I know that deep down, but this particular struggle began in July. Every time I convince myself that we are on the upswing, we have a little detour and we start all over again. It is exhausting.

It is taking a toll on the entire family. Some sleep. Some rage. Some cry. Some write. We all emphasize the bright side, but perhaps we need to talk about some of the troublesome areas more, too.

A recent chat with NIH doctors confirmed that the daily injection would continue for a little while longer. Very little is certain with this disease and doctors are figuring it out as we go. The longer we go without those answers makes it harder to endure. Hope springs eternal, and I hold on to it.

I believe that the cohort at the NIH will grow and that each new patient will help bring answers.

This is a marathon, not a sprint. I try to find solace in that.

The problem is, sprinting was one of my strengths as an athlete. There is no personal trainer for this marathon and no rule book to follow. Endurance is a gradual build up of mental strength and physical toughness. It takes commitment and it takes a determined will.

I picture how much I dreaded double sessions of soccer conditioning because I really despised that part of the training. Running and running and running.

I just wanted to run quickly. It seems I still want to run quickly, but I just don’t know where to go.

My lack of training is showing and frankly, I am fatigued.

Fathers

Tonight, I sit here reflecting on love and the bond I witness every day in my home. It is a love I have been fortunate to feel my entire life and one I observe with a smile. It is the unique love a father has with his baby girl.

The bond of a father and a daughter is unique and unparalleled in many ways. It changes year to year (and sometimes day to day). At first, it is pure strength and a source of complete comfort. At times, it can be a full of discipline. At others, it may simply be a shoulder to cry on. The truth remains, it is whatever it needs to be because a father is always there for his girl.

I fondly recall the moment I first watched Brendan hold Kelsey. It was careful and cautious. It was different than the way he held our son and the way he gazed down upon her sweet face told me everything that I needed to know. We were in trouble. It was new love at first sight.

As the daughter of a strong, dedicated, selfless, and loving man, I grew up knowing that he was always there for me. I live that same type of love with him year to year. My husband serves as that same pillar of strength for our daughter that my dad has always been for me. It is a vastly different love than I can provide, and it grows stronger by the day.

Over the past few days, Kelsey was unable to have her dad beside her during the morning injection. His necessary role is to scream “cheeseburger” at the top of his lungs and provide a hand to squeeze thereafter. It has been a void, and we have all felt it. Absence has made me realize how deep the father-daughter bond is and how it is vital in our lives. A video recording of the scream and the hand of her brother to hold have just not been the same. No one can truly substitute for your father.

And to that point, who have I called on for help, support, and a driver when my husband was away? My father. Who will always answer the phone and “be right there” for me or for my children? My father. It is a vastly different love than my mother provides, and it grows stronger by the day.

Fathers, the world needs your dedication and your daughters need your love.

Thanks for being the men you are exactly when we need you to be: today, tomorrow, and always.

If not, I’ll just go tell a teacher

“I’m so worried about something, and I need your advice,” I hear Kelsey say to her big brother before bedtime. I wait at the door to listen for a few minutes. I always love to hear their conversations and the bonds they are forming as siblings every day.

“Sure, you can tell me anything, Kels.” he replies.

“Well, I’m worried about going back to school. I have these giant red marks all over my arms and legs. They just keep itching me. What if all the kids laugh at me and think I’m a monkey? I am so worried they will say I am a monkey.”

Now, of course, I start sobbing and really cannot go in now. I am hoping that big bro has something poignant and reassuring to say to Kelsey.

“Kels, two things. First, I am there at school with you. If anyone says a word or dares to laugh at you, they will answer to me. I will say, stop giggling. How would you like to get a needle every single day? I think that my sister is braver than you can ever hope to be. And if they still laugh, I’ll just go tell a teacher,” he spoke as the sage I can always count on him to be.

So 2017, here we are. I hope you will be kind and generous to Kelsey. I know that her family is here to support her, our search for a researcher continues around the globe, and I pray that no one dares to notice the marks or the itching.

It is one thing to actually give a daily injection that is working wonders, making it a little bit more bearable to deal with the pain. It is quite another to have her think about not only the medication and the anguish of that injection every evening and morning, but also to worry about the perception of other kids.

At least you can always go and tell a teacher. There is certainly comfort knowing that.

2017, please be kind.

Special Announcement

Every night at dinner, we talk about two things: our favorite part of the day and our greatest challenge of the day. Sometimes we laugh together, sometimes we problem solve, and sometimes we talk about a better way that we could have handled the situation. This is a part of every night that I treasure.

At the dinner table last night, Kelsey shared that she had a “special announcement” to make.

“Family,” she formally addressed us first, “there is something that has been on my mind lately. I wanted to tell you about it.”

“Here we go,” I think.

“I have learned that the world can be beautiful and full of happiness or it can be mean and cold.” Her father and I looked at each other without really knowing how to respond.

“How at five years old has this been on her mind lately?” you may wonder at first. Then you think back over the past few months that she has endured: a hospital stay, four emergency room visits, weeks missed of dancing school, days missed of Kindergarten, an emergency visit to the NIH, steroids, a more potent medicine, a daily injection to better manage her pain, and the giant red patches that itch her and hide under her sleeves and her pants as a reminder of that daily torture. You think about the wonderful moments of the past month alone, including: singing Christmas carols, Santa Claus coming to town, a holiday show, family time, snuggling with her puppy, baking cookies, making ornaments, and watching holiday movies.

Thinking through all of the sorrow and triumphs, all of life’s challenges and favorite parts that we relive every night, I inquire, “What makes you say that Kels?”

“It’s just something I’ve been thinking about lately. Most importantly, I really wanted to say, thank you for making the world beautiful for me Mom and Dad.”

Profound. Insightful. Beautiful.

Painful and joyous simultaneously. Her announcement gave me all of the perspective I needed to end the day (and 2016 for that matter) with a smile.

Here’s to hoping that 2017 is filled with far more beauty and much less pain for my beautiful daughter.

To many more favorites than challenges for you and yours in the year ahead, and to many more special announcements…

I know that I should be grateful.

“I feel like I’m starting to lose my wife again” says Brendan candidly Saturday morning after I finally sit down with my coffee in silence.

We begin to dialogue about the agony a daily injection is now imposing upon our daughter’s life. Once a week was difficult enough for me if I am being honest. It consumes my slumber the evening before.

I wake up with a sense of urgency every Wednesday morning and painfully go through the motions. I sneak down to get the medication out of the refrigerator before Kelsey wakes. She wants to immediately get it over with and I do not blame her at all. If the needle does not sit out, it will cause an even more painful and numbing scream than she typically produces. If you heard the screams, that would be difficult to understand. Though, sadly, it is true.

I want to be optimistic. I want to be so grateful that the National Institute of Health saw us as an emergency case last week and helped us through this six month flare yet again. I want to smile at the notion that this newly prescribed daily injection will help my baby girl get back on her feet. I should be grateful for this medical advancement. I know in my heart that I should. I want to keep smiling and I WANT with everything inside of me to be myself, I really do.

But I just feel sad.

Starting my day by injecting a liquid into my daughter that causes shrieks of sheer agony and visible indicators of pain and swelling once complete is not helping. Sure, these marks are hidden away by her clothes and her optimistic attitude, one I have worked so hard to show her through the face of all of this adversity. But it is weighing heavy on me six months into this flare, and I am just tired of smiling.

When she asks questions like, “God, why did you do this to me?” and lays up at night with sentiments like, “I am just thinking about how much it will hurt me in the morning. It’s keeping me up and I’m sad,” it weighs on me like a ton of bricks.

Today, I will have to inject her twice. I am literally losing sleep and focus when I should be wrapping gifts and grateful. I know that, but I can not help but hear a holiday song and think about the moment when that will happen in a few days and sit for moments on end picturing how much she will likely scream.

This Christmas, my wants are few. What I desire is a new sense of hope and patience through this disease. I thought 2011 was the hardest holiday season we would face. We were torn apart as a family and placed in isolation in a children’s hospital with a blood transfusion necessary during the wee hours of Christmas Eve. I remember looking out the window while sitting up with Kelsey at 3:43 A.M. that Christmas Eve hoping to see Santa’s sleigh and wished it was all but a dream.

Five years later, that part seems easy in retrospect because now it is the day to day. The little things like rushing to attend dance class after work and school, only to arrive and have Kelsey burst into tears in the parking lot that she was too tired. She could not go in even though she wanted to dance. She was too tired and just could not make it through the class. How can you know that at five? To be able to say that while standing at the dance school must have been very difficult for her to say. Dancing brings her so much joy.

Of course we drove home and I cried the whole way. Without much dancing in her life, she still completed her routine at her Holiday Show. The daily injection helped her stand tall and proud while doing so. Her dance school, Jazz Hands Dance Academy, also donated $600 to Kelsey’s Kaleidoscope through their holiday concert proceeds. It was an amazingly powerful moment when they called her up to select winners and explain her cause. Kelsey smiled and said, “It’s a disease.” That disease has caused us so much pain this year. Jazz hands has been the source of big smiles and squeals of delight. We certainly hope that there is much more dancing in 2017.

So today, I know I should be grateful for this daily injection of energy and positive for my daughter. I am sincerely going to try to get there: for her, for my son , and for my husband.

Sometimes, things are just easier said than done.

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 Warm Sandwich

It was December 14, 2011 around 2:30 P.M. when we first arrived to the E.R. My heart racing along with my mind. The moment it hit me was when we placed Kelsey on the scale at registration and started to talk about the past few weeks. Her hospital bracelet acknowledged that this was truly happening.

I realized how desperate we were for medical attention and how I truly should have seen this sooner.

From that moment, we were treated with respect, care, and attention. The doctors were compassionate and concerned.

By the time the evening shift change occurred, we were impatiently awaiting an answer that no one was able to provide. We had likely been there for seven hours without food or a glass of water. I was still nursing my ten month old baby girl so she did not seem to notice that her father and I denied ourselves nourishment because we were completely numb inside. Nursing seemed Kelsey’s only comfort in the world beside my arms throughout the past few weeks. I think it was my solace, too.

Later on in the evening, we met a husband and wife team of emergency room doctors. I will never forget their eyes of concern or the sandwiches they brought Brendan and I around 11 PM. According to the compassionate female doctor, whose name I do not recall five years later, “you really should eat something.” Her warm brown gaze met mine. Whether she was a mother herself, I do not know. She certainly had a nurturing and motherly sense about her regardless.

Even though I had not an inkling of hunger, that sandwich was necessary. For it was a source of nutrition, but even more than that, it was a sign that we were in the right place.

Even if it was a warm turkey and cheese sandwich at 11 PM, it was exactly what I needed.