Neely's Song is back in Omaha, on chemo, needs you

Co-organized

Margaret Harville and Jack Batongbakal are organizing this fundraiser on behalf of Kathleen Lucquete.

Donation protected

This update is from Kat)

Hello, to our amazing tribe of people. You’ve all literally invested in this crazy story of ours and I’m very sorry for not updating sooner.

The last update was not quite right. The team in Omaha generously gave us 10 days to go home so our family could be together for a bit. It was a beautiful 10 days together, but unfortunately Neely’s ileostomy prolapsed badly during that time and she was in a lot of pain. We drove straight back to Omaha to be directly admitted back into the hospital for a stoma revision.

The day of the surgery, there was a change of plans. They decided that instead of just doing a revision, they would connect her transplanted small intestine to her transplanted colon. This was way ahead of schedule! This time, her recovery was much smoother. She was out of bed the next day, really trying to impress the team. During one of the rounds, the surgeon mentioned that if her recovery went well and outpatient labs were good, they would pull her central line (which she’s had since she was a week old) and we could possibly even go back home to Austin for good! This was completely unexpected because I thought we might have to stay for the full 6 months post-transplant.

She spent about 9 days in the hospital this time, discharged on October 24th to the Ronald McDonald House. My FMLA ran out on October 31st and Josh was supposed to replace me, but we decided to risk it and see if maybe we could go home to Austin in 1 trip instead. Thankfully, this all worked out! Josh flew in early on November 3rd, packed us all up while I worked, and we all left Omaha that evening. We drove all night and got to Austin just in time to surprise my mother for her birthday on the 4th. She was so happy!

Since then, it’s been a blur of meds, back-to-work chaos, and the regular craziness of running a household of 6. Neely seems to be doing fine, but some of her kidney numbers are climbing.

We feel beyond blessed to get to be together again. Our family is super close and it was EXCRUCIATING being apart. I’m so proud of how the kiddos rallied and did their best to make it all work. It still blows my mind to think that she was in severe liver and kidney failure in July and we were back home by November. There were some incredibly tough times and we’ll probably all have to revisit that in therapy someday!

I don’t know how to even begin to thank you all for supporting us through this. We could not have done this without your help. Just knowing there were so many people in her corner helped us through some very dark days. Thank you all for donating so generously. Thank you to our employers, Texas Oncology and Chuy’s, for how accommodating, generous, and understanding they were with the situation. Thank you to our family, my brother especially, for holding things down at home to get us through this.

Thank you to one of the best people I’ve ever known – Margaret Harville – for organizing this GoFundMe. You hung out with us at Dell Children’s in those early days in July. You saw something I couldn’t let myself see, that my baby girl was turning yellow and that she was dying. You knew that there was no way we were going home from Dell and you jumped in and took care of us before we could even fathom where the road ahead might lead.

Thank you to Neely, for doing that thing you do. You continue to beat the odds. I know you probably get tired of being called a superhero, but you truly are.

Thank you to the family, friends, and loves ones of Neely’s donor. “Thank you” is not enough and will never be enough. Every day, every smile, every laugh, every moment with our girl is only possible because of a decision you made in the worst moment of your lives. We think of you and try to honor this gift every day. I truly don’t have the right words for this yet.

Thank you all again for the prayers, well-wishes, positive vibes, good thoughts, generous donations, and check-in texts. We are so blessed to have you in our lives. We truly could not have gotten to this point without you. Love you all!!! -Kat

Hi, this is Margaret, this family needs your help. Please share this page with your friends.

(See the Tip below.) Please check out the Facebook link below to see Neely's song. Copy and paste

https://m.facebook.com/NeelysSong/

Neely update: This beautiful, strong, loving child is being discharged to the Ronald McDonald house. Mom and Neely will be in Omaha a few more months with visits from Dad and siblings as often as they can make the trip.

Neely Jacqueline Claire Lucquete is an incredible 11-year-old in need of a multi-visceral transplant. She was born with Hirschsprung Disease, sometimes referred to as Short Bowel Syndrome. She and her family are preparing for five (5) organ donations: small intestine, colon, liver, pancreas, and kidney. She is upgraded to a 1B status, which means she is at the top of the list. The family, dad Josh, mom Kathleen (Kat), sisters Laney and Eilley and brother Renner are together in Omaha. Neely gave a thumbs-up in the picture below while boarding the medical flight there.

Bills don't stop, expenses increase while the family is displaced. They still make house payments, utilities, gas, food, lodging, medical supplies, car payments, insurance, and the general running of a 6-person household with 2 dogs. Thankfully Uncle Jack, Kat's brother can stay at their home and care for the dogs. The family misses them dearly. Kat can work remotely and Josh will be on leave.

This is all so sudden, her change in health status with no time to plan for packing. Neely has been doing so well. Yes, she is on total parenteral nutrition, (TPN), colostomy care, a port, regular labs, around-the-clock medication, backup batteries, generators and so on. Their home has stashes of medical supplies everywhere.

All funds will go directly to the Lucquete family to pay the expenses listed above. The ones that don't go away just because you do. Your generosity so far has been life-changing and the family is beyond grateful. Thank you.

Tip: When you donate, look at the bar below and slide the bar to the left to zero not leave a GFM tip, it's not for the family.

Below are some family photos I was able to gather. No videos unless I post on YouTube and I don't.