Guest post – We send strength and love to Aiden.
Aiden and I have been admitted to CHLA since May 15. His BMT was scheduled for June 6th. But was postponed due to Aiden having high fevers and testing positive for Rhino-virus. He had a CT scan of the chest, abdomen, and pelvis. This was the last step we needed to move forward with his BMT. But they found a lesion inside Aiden’s right upper lung. This was totally UNEXPECTED. He was on antibiotics and IV fluid for several weeks. He had many tests and procedures done to find the reason for this new infection. He had an NG tube placed to collect fluid from his stomach for possible TB and fungal infections.
More lab work to rule out possible valley fever. He was in isolation for 6 weeks. Unable to keep food down or liquid he got so weak he wasn’t able to walk. During this long stay, Aiden has been in and out of the PICU. His breathing continued getting worse. Aiden was working so hard to keep his oxygen level stable. At one point, he was on high-flow oxygen therapy, CPAP, and intubated for support. Finally, after 3 months we found out what was in his right upper lung. Liquid from having paralyzed vocal cords. Occupational therapy suggested we put him on a dysphagia diet to help him slow down his liquid intake.
Until the beginning of September, Aiden’s oxygen dropped into the ’50s. He was rushed back to the PICU. Now waiting for a Trach to help him breathe on his own and off of the machine. Being parents to a child with a compromised immune system and a genetic disorder is very difficult. Even harder with bilateral vocal cord paralysis. It’s definitely not easy to stay positive when your child feels ill. We continue to pray for him and his health. I know God has a plan for our son Aiden
Dream Big! We wish everyone a happy and healthy school year. Be brave and follow your dreams!
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.
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.
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
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
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
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.
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!
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 💜