charity – Page 2 – Kelsey's Kaleidoscope

Dear Santa

While going about our bedtime routine, Kelsey asked me what was on my Christmas list.

I chuckled and said that the health of my family and friends were the only things I would write on mine. That is the truth.

She giggled and said, “Is that more important than hot new toys?” Then she thought about it for a minute and said, “I guess it is. Is it ok for kids to want the hot new toys, though?” as if she was speaking a ToysRUs commercial!

“Of course it is. Adults want children to have the hot new toys that make them smile,” I replied.

After another few mintues and a conversation change, she brought me paper and a pen. On it, she wrote:

Dear Santa,

My mom wants health for her family and friends. Maybe you could take away Mr. Needle, too?

Love,

Kelsey

She said all I needed to say. Santa, now you officially know my Christmas wish.

Helpless to Hopeful

Sometimes I sit and stare at Kelsey in amazement. I am continuously amazed by her beauty, her wisdom, and her poise. More often than not, it is because aside from being truly dazzled by the fact that she is my daughter, I am in amazement that she could possibly have this hidden condition that so few people can truly understand.

Dr. Chip Chambers helped explained the terror or the rare disease dada2, which manifests as PAN for Kelsey, at our Second Annual Gala. I will share his speech in the near future, but one of the sentiments he shared has particularly stuck with me.

How would you feel when your five year old is having strokes and the doctors cannot tell you why or tell you what to expect next?

Having lived through that pain while my daughter was three and living that question on a daily basis, I can tell you the answer. The answer is fear of the unknown, fear of what you will wake up to every morning, and fear that you are not and have not done enough as a parent.

For those of you who attended our Gala, thank you from the bottom of my heart. No parent wants to live in fear or to feel helpless for their child. Your support, generosity, and love helps my family feel more hopeful than helpless.

We doubled our efforts from last year and will continue to fundraise, speak out, and help anyone else who finds themselves affected by PAN and dada2.

Our Third Annual Gala will be even bigger and better. Save the date, November 23, 2018.

Image may contain: text

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…

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.

Together, we can…

Ralph Waldo Emerson once said, “cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously…” This week, I have given thanks continuously. I am still in shock of the overwhelming elegance, promise, and love felt at Valleybrook Country Club on Friday night, November 25.

Maybe it was because the event followed Thanksgiving? After all, Thanksgiving is a time to reflect on the year that has passed and all the blessings in your life. During Thanksgiving dinner, Kelsey said that she was grateful for one thing. She said, “I am grateful for tomorrow night.” Grateful seems an understatement. My family fought back tears at her sentiment because we realized that she is already aware of kindness and gratitude at five years old.

I encourage both of my children to stay positive, give thanks, and count every blessing. It seems that they are noticing and applying the cultivation of gratitude in their day to day lives. For that, I am grateful.

I think back to Friday evening with wonder. I stood before the guests in absolute awe of the compassion and warmth that everyone had for Kelsey, our organization, and our cause. We are still overwhelmed by the support and generosity shared at Valleybrook Country Club. The collective efforts of the night helped us raise $11,000.

The support we received on Friday evening both fueled our mission and strengthened our purpose. We are committed to raising awareness and finding a cure. This week, we are one step closer to those goals. We are grateful beyond measure.

In closing, Helen Keller states that “alone, we can do so little. Together, we can do so much.” Kelsey’s Kaleidoscope, Inc: A New View for PAN is just getting started. We are on a mission to raise awareness and find a cure for Polyarteritis Nodosa and all affected patients. Our affected patient is grateful for you and so are we. Together, we will do so much.

15241199_1145208078895606_3399869107634811905_n 15241430_10211909604562474_894589293199788637_n 15250907_10211203072102217_2952727769104601664_o-1 15252545_10211202947699107_5054202393553561775_o

Thankful Thoughts

Gratitude is often defined as being thankful. My family’s emotions have recently been on a full swing of highs and lows. Today, however, is all about thanks. What began as a seed idea has blossomed into a mission and a quest for awareness, treatment, and a cure for our beautiful Kelsey and all others affected.

Friday, we will gather to dance, laugh, hear a bit more about Kelsey’s disease from Kelsey’s favorite doctor, and count all of our blessings. One main blessing is the ability to type from behind my computer screen the words I often find difficult to say aloud. I thank you from the bottom of my heart for reading, sharing, and joining me on this ride to help find a better future for my baby girl.

Today is about thanks. Whether you shared Kelsey’s video (and if you think of it and have not, please do), said a kind word, purchased tickets for Friday, or donated any of the items for auction on Friday, Thank You! We have collected well over $10,000 worth of items to auction through both a raffle and a silent auction display. We have Flyers tickets, Sixers tickets, a Party Host package, limited edition Pandora basket & gift card, portrait & photo sessions, power washing, swim lessons, spirits, restaurant gift cards a-plenty, beauty products, and so much more. I have been overwhelmed this week with attempting to fit ALL of the generosity into a brochure you could actually read. There are just so many wonderful friends and family members around. My family and I are very grateful.

I am so excited to share all of the many bounties and treasures we have collected with you that I thought I would end with a photo sampling of the items we will have on Friday night. THANK YOU!

fullsizerender-23

“Progress will not prevail through silence.”

I can vividly picture the buckets of rain pouring down on my car in the spring of 2004 before GPS was on my phone or in my car. I was completely lost in a foreign place and saw spotlights in the Home Depot parking lot up ahead. As the daughter of a handyman, I knew those lights anywhere.

I safely parked and called the only person I could, my Dad. He knew exactly how to help me find this hidden school in a town I knew only through my google search. That is my father for you. It seems that he is always there any time I need him with the exact answer or helpful hand. Whether it is repairing a flat tire on the curved and very dangerous on-ramp to 295, sitting with me through every day of Kelsey’s hospitalizations and always arriving with a large pumpkin DD coffee, fixing anything for me in a pinch, or building a deck with my husband, my dad is always the one.

And so my father saved the day yet again on that Spring evening of low visibility as I was about to face my first interview in the world of education. The Superintendent and Principal were holding 15 minute interviews in the library throughout the day, and I believe that I had the final appointment of the night.

Now five minutes late and wondering if they would still be inside at 8:20 P.M, I found the door locked. Lacking an umbrella and holding my teaching portfolio that grew soggier by the second (thank you to whoever created plastic sheet protectors, by the way! Without you, I stood not a chance.), it seemed that Murphy’s Law was enjoying this hour on my behalf. When I finally reached the correct door, now likely ten minutes tardy, both Superintendent and Principal seemed warm and full of energy after a long day at work.

Late and wet, I forged on with my educational jargon, apologized profusely for my tardiness, and went with the honest approach about the rain. It was not raining when I left my evening class in Ewing, NJ nor was there a cloud in the sky all day while I was student teaching. I did not even think to grab an umbrella just in case. I was, after all, still a college student.

The two administrators could not have been nicer to me and seemed to let my joke and my honesty lighten the mood. I had an immediate comfort and connection with these two, and the feeling must have been mutual.

The journey to a job offer did not end that night, and three more interviews, including a demonstration lesson, were still necessary hurdles to cross. At least I knew the way now. The sun seemed to shine and mock me on each of the subsequent interview days that followed this initial test of my will and my patience.

That day was serendipitous after all and maybe it was Murphy’s Law that made me stand out. Whatever the case, I was offered a second grade teaching position before I graduated college. I was extremely proud.

After the first blunder, I read more about this tiny town and was impressed with all that I learned. Over the years, I have met countless families who have done everything from the extraordinary to the everyday necessities for their children. I have assisted in the home schooling of a student near and dear to my heart who still battles the effects of Leukemia. I have hosted tailgate parties with my grade level partners to celebrate local sports teams, created “Olympic” events and reading challenges with my incredible colleagues, and loved every one of my students dearly.

I would like to think that I have made a difference in the lives of many. They have given me joys, challenges, and proud moments that I will never forget. Each one has taught me something about life, humanity, and the pursuit of academic excellence.

The relationships that I have made in this town surround me in almost every aspect of my life. Over a decade of connections add up quickly. The irony of Saturday for me was that the relationships that lifted me up this weekend are the same ones I kept in the dark for so long. My journey was purposely kept hidden because it was easier, I was in denial, and I felt that it was the most professional thing to do.

The students and families who came to support Kelsey’s Lemonade Stand on Saturday at Chestnut Branch park filled my heart with more happiness than I am able to describe in words. Through the efforts of Tina Munholland, her family and with the assistance of all members of the Lutz, Buckley, Capasso, Kulback, and Buck families (among countless others that I admire and appreciate), one town came together to raise more than $1500 to help my family find a cure for my daughter. Though the money was incredibly generous, Saturday meant so much more than the donations.

Then this afternoon, I unexpectedly encountered a former student who is now in sixth grade. We did not expect to see one another. Seeing him was surreal for me. There he stood, tall and proud in a Kelsey’s Kaleidoscope t-shirt I did not even know he owned. His grin spanned from ear to ear, and I was left speechless. I was truly overcome with emotion as I am now typing about the love and support I have felt over the past few days for my daughter’s cause.

Tears stream as I reflect on all of the years and the good I thought I was doing. I realize now that I am just lucky to be a part of something amazing. There is a tremendous amount of great at every corner of that tiny town. Those, like me, lucky enough to call it our work home only seek to enhance the great and make it exceptional whether we realize it or not. How fortunate we all are.

Silence is said to be golden in a theater, but I have found little value in it elsewhere. My new motto is “Progress will not prevail through silence.” Thank you for listening, supporting, and promoting progress. Thank you Dad for somehow navigating me to that hidden school and thank you to the Superintendent and Principal who gave me a chance.

These words are a humble attempt at my heartfelt appreciation, though they could never fully convey my sincere appreciation.

#newviewforpan

Wit Us All the Way

June 10, 2014 is a day that I have tried to forget every day since. I remember the moment that Kelsey’s doctor walked into the room with eyes that said too much. I knew that this would be the beginning of the journey, and I have gone through the motions of anger, denial, exhaustion, and depression since.

If not for my mom on that night, I think I would have broken. Instead, when I went to pick up my son, I was given a dish of pasta and a goblet of wine. I could barely stomach either nor the words to speak all that I had learned at 5:05 PM. I wondered if it was the terrible nightmare that kept me up at night every evening since I knew it was a possibility. “Polyarter…er… I guess I should learn how to pronounce this,” I thought.

I googled the entirety and read the very little that was written on the disease, especially for a three year old. The New England Journal of Medicine provided the most detailed account of the new findings and patient studies to date. Though little was written, I found that the more I read, the less I could handle. I could barely get out of bed.

As you may be thinking, the days, weeks, and months that passed following the first steroid dose and the booked chemotherapy appointment were a battle. We finally had a diagnosis and a plan, and for that I was grateful. The National Institute of Health saved us the side effects of the chemotherapy infusion by offering us the option to use Enbrel instead as a TNF blocker. The doctors had good reason to believe that it would improve Kelsey more than chemotherapy and virtually eliminate the risk of stroke, “as long as we can stay ahead of the dose,” they cautioned.

Always stay ahead of the dose, we try. Sometimes staying ahead feels like lagging behind, and it was for that reason that my family and I finally decided that our silence was only causing an implosion of worry and pain. To stay ahead, we need more.

Therefore, on June 23, 2016, I truly began to open up about the feelings and struggles I had endured as a mother. If you read this post or have read others, I thank you. I have found a great deal of strength through the keys of this keyboard and the kindness of many who do not realize its effects.

September 11, 2016 is another key day on my journey for Kelsey. A heavy day for our nation that evokes sorrow, hope, and patriotism. The fifteenth anniversary of a difficult memory now holds a new place in my heart, too.

Maybe it was watching the footage of the twin towers with my son that morning that started the nausea. Or perhaps it was the reality that today would be the day my family’s mission became a public reality.

As easy as it is for me to type our tale and share it behind a computer screen is as difficult as it is for me to openly discuss my feelings. September 11, 2016 would force me to do that as Pat’s King of Steaks allowed us to host Cheesesteaks for Kelsey. Words cannot truly express what an incredible day it was for my family.

The support, love, and generosity of family members, friends, and strangers near and far, was truly unbelievable. Some I have never met, some I have not seen in seven or thirty years, and some just a few hours. With each new smile, $1.00 donation for a bracelet or through your purchase of a steak, you showed my family and its mission support. The shades of blue I have felt for two years started to turn a more purple hue. We cheered the Eagles on to victory and then had four beautiful cheerleaders grace us with their spirit and support following the win. It was a mix of green, red, white, blue, purple, and pink.

It was a beautiful day to be in South Philadelphia. We came together for cheesesteaks and we came together for Kelsey. Love truly transcends and love is what carries us through.

If you called, texted, came in person, bought a bracelet, or thought about our efforts on Sunday: THANK YOU. I always tell my kids that they can move mountains, just as Dr. Seuss has told me for many years.

Today, I am starting to believe that maybe I can, too.