Cora’s Story

Site created on January 18, 2023

Welcome to Cora’s little part of the internet. Thank you to everyone who has shown Cora and our family love and support during this rollercoaster we’ve been on.

For anyone curious as to how we got here, let me back up a bit. Last week, Cora started having a pretty bad cough. On day 3 (Thursday Jan. 12) we noticed a super bloody diaper that was pretty concerning. Dusty took her to the pediatrician who referred us to Stl Childrens ER as it was stumping the dr. as to what was wrong.

ER was also initially stumped but an X-ray and ct scan revealed a large mass in and around her right kidney called a Wilms tumor. So, just a few hours after entering the ER, we were told our 22 month old has kidney cancer. What?! How is that possible? She was playing and running around with her brother just a few days prior. An oncology fellow met us in the ER to answer our initial questions and reassure us that these things come on quickly and there was nothing we could have done.

The next step was to send her to the PICU for the night to closely monitor her vitals. Because of her cough, we took turns having her sleep upright on us. Poor baby was so overwhelmed by all of the strangers but she felt comforted in our arms.

Friday was filled with a lot more testing and waiting for results. We met with her surgeon, Dr. Yeh, and her oncologist, Dr. Willis. Once the picu deemed her stable, we were taken to the oncology floor to settle in to our new home.

With wilms tumors, the ideal thing would be to remove it right away. However, testing revealed that it had spread out to the right renal vein heading to the inferior vena cava. But they still scheduled the surgery for the coming Wednesday.

For a few days we just tried to lay low and keep Cora stable. It was hard watching her appetite and energy decrease and, by Sunday, she was too tired to do anything else but lay in bed.

The other big complication that started to appear from her tumor was that it was draining blood into her bladder, causing clots to form. She was in so much pain, constantly trying to grunt those clots through. Thankfully they have an awesome urology team here who was able to suck some of them out through a catheter and give some relief.

Fast forward to Monday when the surgeon came in and said that after watching her vitals and consulting with a leading expert on wilms tumors, he thought the surgery to remove the tumor and kidney was too risky at this time. We were pretty thrown off but all we can do is trust the doctors and nurses. Instead, she would have a different surgery to put in a port to administer chemo as well as get a biopsy (sample) of her tumor to run pathology and know what chemo drugs to give. The main surgery is postponed for 6 weeks after chemo hopefully shrinks down the tumors size.

Cora was still struggling with passing clots so the urology team decided they would also be part of surgery to try to remove all clots from the bladder. She went into surgery around noon Tuesday. Let me tell you that the hours that pass by during a surgery truly feel like a lifetime. We got a call when it started and then every 90 mins or so. All in all, it took about 2.5 hours. They successfully placed the port and gathered enough tumor to send off to the lab. In the bladder, they were able to extract all clots through just a larger catheter without any more invasive techniques. Huge success!

Cora’s vitals weren’t the best after surgery with fever spikes and requiring a lot of oxygen. At some point, they thought they might have to send her down to the picu for closer monitoring. But, she got through the night pretty peacefully.

Now, here we are. Ready to help her start her chemo regimen and figure out what her new normal life looks like. It’s wild how quickly our lives can change. You wanna know the coolest part though? We’ve witnessed a powerful community rally around her. Prayer chains, meals, crayon drawings, simple texts, a warm non-hospital coffee, hugs… the works. This family is truly blessed. And Cora is a fighter. She’s taken everything in stride. She can’t say many words yet, but the few times she’s called out for us or wanted to squeeze our hands, it just melts our hearts. I also told her she gets a hall pass to say all the cuss words she wants haha. Hopefully she won’t even remember this crazy time of her long and beautiful life.

And as for Ethan, he’s a breath of fresh air anytime he comes in for a visit. We miss him so much. I’m sure he misses his sis (they share a room after all) but he’s in good hands with family help.

We will try to post updates in here as often as we can, and we just thank you all for your love and support!

Lisa and Dusty

Newest Update

Come walk with us!

Journal entry by Lisa Weber —

Friends, 

I can't believe Cora turns 3 tomorrow. She is doing very well and is looking forward to bringing in her favorite food, fruit snacks, for her birthday celebration at school. She had good scans a month ago and a positive check-up from her nephrologist and oncologists. Next one is in May. 

We wanted to let you know of an exciting event that we are taking part in next month. Friends of Kids with Cancer is an organization near and dear to our hearts. They provided gifts and support for Cora while she was at the hospital, during treatments, and beyond. 

They are doing their annual Walk with a Friend and 5k race the morning of April 13th around Creve Coeur Lake. I've put together a team called Cora's Crew. If you are local and wish to partake, follow the link below and join our team! I think there is a discounted price if you register before March 22. The more the merrier! Plus, I enjoyed designing a little logo for her that will be on the back of the shirts.

https://runsignup.com/Race/MO/StLouis/FOKWCWalkWithaFriend

As always, thank you for this past year and all the ways you have shown the power of community!
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