Month: April 2022

Wedding Bells

This weekend, Kelsey attended her first wedding. The stunning bride and her handsome groom are family, and the occasion was very special for each of us.

Filled with emotion and joy for the couple, we realized how long it has been for a family wedding overall.  

Perhaps it is because Kelsey resembles the bride or just because Kelsey was present, but for a few moments, a conversation returned to make the day even more emotional for our family.

When Kelsey was two years old and we were still unsure of her body’s pain, we had a specific biopsy planned. It was scheduled for an upper thigh lymph node.  However, when we met with the pediatric surgeon for our pre-surgical visit, he started reviewing her neck and talking to us about how he would try to use a natural fold in that area.

Young and afraid parents, we remember vividly asking a naive question about the scar and it’s constant reminder of Kelsey’s battle.  “What about her wedding day,” we questioned.

He turned to us and said one the most powerful responses of our lives.  It was a statement that changed our perspective overall.

“Keep in mind, our goal is to get her to see her wedding day.”

Our efforts remain strong and progress for her disease has been made.  When Kelsey has great days and weeks, it is easy to want to forget about that day.

We can never actually forget that line nor our commitment to that milestone and many more…

Routine Wishes

The simple and routine can be the things you wish for most with a rare disease. In fact, the routine and normalcy are often what you dream about when pain strikes fast.

Migraines, eye movement, eye strain, constant nausea, and no answers was a recent update we received from another  patient Kelsey’s age. She is currently experiencing daily episodes of pain and discomfort without relief or answers.

Today, as we look at Kelsey and her treatment plan, we continue to be grateful while it works for her. Talking to this family made the ever-changing nature of a rare disease deeply troubling.  We learn from each other and hope our doctors can safely manage all symptoms to give our children comfort and relief.

We count our blessings every day and hope that this family can soon look back on this difficult time.  Our family efforts to further fund research and awareness are always on our mind to help those we know who struggle.

Be brave. Be grateful.  

Motherhood

Being a mother is complicated. Motherhood is challenging and complex with no rule book or script. Sometimes, you follow your instinct and realize that it all worked out, but a redo would be preferred.

In the end, though cliche, mother knows best.

We celebrated the president of Kelsey’s Kaleidescope, Inc.’s birthday this week. She is a mother of two and grandmother to three. Reflecting on how to best celebrate the life of this great mother, we made toasts as a family.

Kelsey remarked that her grandmother had a wild side and a caring heart. Her wild side included doing anything for her family. She thanked her grandmother for making such a supportive and loving environment. Kelsey continued to express her gratitude regarding this organization and the tireless pursuit she bears to raise awareness and help us find a cure.

Kelsey’s brother also spoke. He thanked his grandmother for building this amazing life and creating his family. He continued to remark on her philanthropic efforts and praised her for beginning this organization, one he hopes to be president of one day.

Both children spoke about kindness and love in their own ways. Maybe motherhood is more natural than we think. Kids see the love and feel when they are protected. They know when you are genuine and when you express an interest in them.

We are lucky to be surrounded by love and support. The two young ones knew just want to say to celebrate the birthday of such a special mother.

We thank this mother for her endless love and support. She is brave, bold, and wild according to Kelsey…