New View for PAN – Page 2 – Kelsey's Kaleidoscope

Determination

Guest blog, President of Kelsey‘s Kaleidoscope.

The definition of determination is fixed on resolution. No one displays determination more than Kelsey. She approaches everything she does including sports and other activities with fierce determination. Some activities, she likes naturally and others, she does not. She will try anything, even if it’s painful for her if it makes her brother or her family smile.

She struggles through it and completes the task with determination. Victory is always possible for the person who refuses to stop fighting.

This is a lesson that we can all learn from Kelsey.

I have been watching her for the past 11 years do exactly that. She has taught me so much and her determination with life challenges sometimes successful and sometimes not has given me the courage and bravery to get up and be determined that we will not give up this fight. We will continue to raise money for research and a cure so that one day she will achieve her victory. There are many things I love about Kelsey and her determination is one of her finest qualities.

That determination has inspired me to do the same. Thank you Kelsey; you are truly one of a kind. I love you immensely.

Please save the date November 18, 2022, for our seventh annual gala at all Auletto’s in Deptford, NJ.

Details to follow in the coming weeks.

Denied

Deny; defined as the refusal to give or grant.

A call, portal message, or phone call that states, “denied,” for your child’s health or medication elicits an emotional response and feels unbelievable.

We have been here before and feared we would see it again soon. Dealing with it prior does not prepare you for the fear in your heart and the pit in your stomach that will not go away at hearing or reading that word.

Denied.

It stings.

We will advocate and assure treatment is sent to us. But it makes you wonder how a denial can even be possible with a life saving medication for a child.

We recently watched Purple Hearts on Netflix and during one scene, the main character is denied her life-saving medication. She does not have the money to pay out of pocket, so she goes without. Though a Netflix movie, the question remains, how is this possible? How often does this happen?

Denial is never associated with positivity, but denial for your child is simply unacceptable.

#BeBrave #Advocate #NewViewforPAN #purplehearts

Summer Show

For the first time, our family experienced a concert together. It was a summer request for Kelsey to see a live show, and Imagine Dragons and Macklemore did not disappoint. The outside venue was a perfect choice for a live, summer show, and the energy was electric. Perhaps we should say, Radioactive?

Macklemore’s set produced flames, guest singers, and fun. His messages about the Same Love and feeling Glorious were powerful. We did not know how Imagine Dragons would top this set and this positive atmosphere, especially after Thrift Shop and Can’t Hold Us. @macklemore

Yet, they did!

As the hits played on and the evening sky showed the beauty of the skyline next to the venue, Kelsey’s energy depleted. Young children around us danced until the show was over, but Kelsey sat out and needed to rest her legs. As Dan Reynolds sang,

“Whatever it takes

Yeah, take me to the top I’m ready for

Whatever it takes

‘Cause I love the adrenaline in my veins

I do what it takes,”

We were seated and enjoying the show. For all of Kelsey’s outward and energy and fight, whatever it takes sometimes means just taking that break or leaving early because that’s what it takes.

As Dan’s Follow You states, “I will you follow you way down wherever you may go

I’ll follow you way down to your deepest low

I’ll always be around wherever life takes you

You know I’ll follow you..”

Love and music connects us. It was special to be a part of such a great night with our kids. Imagine Dragons also sing without explicit lyrics, which was an added bonus for the family event.

Thank you to the artists who made this night one to remember.

#imaginedragons #imaginedragonstour #mercury @danreynolds

Vasculitis & Its Impact

Wow.

Yesterday, we awoke to news coverage on vasculitis and its impact on the body.

Ashton Kutcher shared his rare disease with the world, and we could not help but empathize with Ashton and his wife, Mila.

People, US Weekly, CNN, Fox, NBC, ABC, and the list goes on…

Ashton’s struggle is apparent and his open discussion is hard to read. We wish him well and hope that he will continue to raise awareness of vasculitis and its rare forms.

#BeBrave #AshtonKutcher #newviewforpan @aplusk

Catch a Wave

As summer winded down, we were able to soak in a beach day. The sun was blazing and the calm surrounded us. Kels wanted to try to catch a wave.

The surf was (happily) light and little movement occurred within the ocean. As her typical self, perseverance kicked in and she waited patiently. Kelsey asked her mom to watch her in the water. Of course, she did. Though she had to wade in the cold awaiting her wave, the excitement Kelsey felt with each lost wave and each thumb’s up upon her fall was captured warmed her mother’s heart.

After at least thirty failed waves, Kelsey caught the wave.

She rode it into shore beaming ear to ear.

Her mother’s calves were frozen, but Kelsey surrounded her mother with a huge (and ice cold) hug regardless.

Kelsey continued to tell her mother about how long it may take to catch the right wave, but how it would always be worth it.

Lessons learned and absorbed right there on the surf.

Kelsey’s wisdom, perseverance, bravery, and patience never cease to amaze us.

Stay strong and catch the wave. It will always be worth it, according to Kels.

All the Rumors…

Reflecting on July has us thinking about all of the rumors we hear or have heard about navigating the parental journey. This week alone, we realize… all the rumors are true.

It is difficult, it is challenging, and some days feel like you are walking in one giant circle. One step in the right direction sometimes throws you back to the starting point in the blink of an eye.

Then sometimes, you get it right. The joy on your child’s face is your reason.

Moments of up and down, right and wrong, each are a part of the process.

Love, strength, and honesty will always go a long way, too.

We look forward to our last month of summer creating more memories and navigating new territory.

Stay strong and be brave!

The Big Check Up(s)

Sunday came and smiles faded. The reality of scans, single and team doctor visits, and pathology soon filled our headspace. The team of medical providers we have is world-renowned. Seeing them and providing both a PCR test and saliva test for access was also a first. There is truly no place like The National Institute of Health.

Gratitude over the level of care we have is always there. Being in this facility is truly difficult to explain.

However, there is also something to be said for the way we feel watching Kelsey give ten vials of blood, monitored by ultrasounds and liver scans, and meeting with so many doctors.

All of the worry and concern return when reality stands in front of you.

Kelsey, as always, is brave and strong. As we waited for one imaging study, Kelsey asked, “How many more years do you think I will have to come here to be studied? Aren’t we working on a cure?”

Yes, Kelsey, we are. The timeline is still tentative, but we thank you for helping Kelsey achieve this goal.

Until we reach that goal, thank you 💜

Golf Gratitude

Thank you to all of the supporters who came to our third annual golf outing at The Legacy Club on Monday. This was our most successful outing, yet! The weather was pristine and not a cloud was visible in the sky.

Everyone has been so supportive and we appreciate you all. Kelsey was present for this event to see how many wonderful friends and family joined us to golf, assist, or support our efforts to find a cure in the near future.

Kelsey was touched and thanks you all. Hearing her impressions and appreciation made this event truly special for our family.

Thank you to all.

With each passing year and event, we are one step closer to a cure. We appreciate you!

#newviewforpan

Summer Sickness

Amidst celebration of birthdays and milestones, summer sickness crept into our home. Our vacation plans and family celebrating remain on pause, but the main impact of our recent medical visits was the conversation surrounding family illness.

The discussion surrounding how a fever sends smoke signals and a lingering cough prompts fear look different at eleven than they were between adults when Kelsey was only nine. At eleven, she questions and worries herself.

Our dialogue shifts as our children grow in age, but our mission is always the same.

We thank you for your continued support and hope to make our rough roads paved with strength and hope for new family’s facing this diagnosis.

Here’s to hope, strength, and bravery today and every day!

May summer illness shift as quickly as the date fly by…

7.11.22 Golf Outing

Monday, July 11, 2022

The Legacy Club at Woodcrest Country Club

300 East Evesham Road

Cherry Hill, New Jersey

Brunch and registration start at 10:00 AM.

11:00 AM Shotgun Scramble

Beer Cart Included

Prizes to follow Golfing.

$200 per golfer

RSVP – newviewforpan@gmail.com

Venmo @NewViewforPAN