2018 Salt Lake City Superheroes Unite!

Fighting 4 Lincoln

I am so excited to participate in this year's CureSearch Walk. This will be our teams 4th year participating. The Walk benefits CureSearch for Children's Cancer and the money our team raises supports their mission to fund and support targeted and innovative children's cancer research! Our son Lincoln is currently participating in a clinic trail and has been for over a year. This trial has allowed him to fight and live with barely any side effects. This walk is so important to our family because we know first hand how important research is. Without research and without this trial he might not have been here with us still today.

Here is Lincoln's Story:

Our sweet Lincoln was born on 3/10/2015. Our prefect sweet baby boy, baby number three. He was healthy and happy. We were so excited to bring him home, for the other kiddos to meet him and for us to be able to enjoy time with our family.
At two-months-old we took him to the doctors for an umbilical hernia. The following day I noticed his abdomen felt hard under his rib cage. I brought him back to the doctors the next day and was assured his organs didn't feel enlarge and that he was okay.
Over the following two months I continued to notice this hard area of his abdomen. When it came time for his four-month check up, we took him to another pediatrician in the office. I pointed it out to her and told her that this hard area was not changing. She felt like it wasn't normal and referred us to get an ultrasound done up at Primary Children's.

On July 15, 2015 our life's were forever changed. My worst fears of what I had been feeling in his abdomen became reality. The ultrasound tech had seen a mass in Lincoln's liver. After more test and scans we meant the Oncology team and were told Lincoln most likely had Hepatoblastoma, but we needed the other results to know what exactly we were facing. We were sent home to await the rest of the results and to hear what the next step was to fight this terrible disease.

After what seemed like forever we got the call, Lincoln's AFP counts were indeed extremely high and his mass was in 3 to 4 parts of his liver. Now we wait again, we were waiting on two surgeons to look over the CT scan. We were so devastated, but remained hopeful that the surgery would be an option to remove the tumor completely and we could avoid using chemo.

Lincoln went in to get a partial liver resection on July 22, 2015. The surgeons removed his tumor and cleared his margins by taken nearly 25% of his liver. We were so grateful and felt so blessed. After staying in the PICU and the recovery unit, we received the pathology results. Because of the type of cells found in the tumor, Lincoln would need chemotherapy. Our hearts broke yet again.
Before heading home from the hospital they noticed Lincoln's blood glucose levels were low and unstable. After many pokes and test we found out he has yet another rare diagnosis. He was diagnosed with Hyperinsulinism. After we got him on the medicine to treat his sugar levels and his body was able to stabilize, we were sent home for two weeks to allow his body time to recover from surgery prior to starting chemotherapy.

On August 17, 2015 Lincoln went in for his first dose of Chemotherapy. Lincoln powered through his therapy with more strength than I could of imaged. He did get nauseated, he did lose his appetite and his hair. I could see how difficult it was on him, I could see it in his eyes and it hurt me knowing we had no other options to fight this. Lincoln ended treatment and rang the bell on September 23, 2015
After Lincoln’s fight we began looking into genetics because of both of his diagnoses. We did many test at the Huntsman and with Primary Children and now have ruled out any genetic causes. While waiting on these test we decided to do a precautionary ultrasound.

On December 21.2016 Lincoln had one of his follow up screening and that ultrasound. When doing the ultrasound they found a new mass on his kidney, they followed up with a CT scan and found more masses on his lungs. We were thrown back into this world that we had hoped was behind us.
Lincoln had a lung biopsy and a port placed on December 28.2016 and on January 18. 2016 Lincoln had half of his left kidney removed to remove his primary tumor. After sending out samples to multiple pathologists we had a new diagnoses. He now had stage 4 Metastatic Undifferanted Sarcoma. We were told Lincoln has 15- 20 nodules in his lungs.

Lincoln was put back on chemotherapy to treat the lung nodules. After the second round of a harsh regime that put him in the PICU we found out the therapy was unsuccessful at shrinking the mets in his lungs. After this devastating news we started looking for another option. Looking into trials and anything possible to keep fighting. Lincolns doctors sent out more samples and we found out that his tumor was positive for PDL1 gene. Lincoln begun a clinical trial that targets that on June 23rd 2017. His nodules have shrunk, some disappeared and some continue to remain stable. Our Hope is to get them to the point where another surgery could remove the remainder of the cancer. Lincoln is currently in treatment fighting this secondary cancer. Lincoln beat cancer just 15 months prior to his second diagnosis.

Before Lincoln was diagnosed I was blind to this world that I now have seen too much of. I follow many families and their stories. I have seen many suffer and too many children gain their wings. Some of these kids and their families battle this horrible disease for far too long. Most of the treatments we have come with many horrible side effects long term and immediate. Lincoln's treatment is hard on him and our whole family, he had spent more time in the hospital than at home while undergoing chemotherapy. He has had hearing loss, nausea, fevers, loss of appetite, low blood sugars, breathing difficulty, mucositis, and far too many of the awful side effects.

Since beginning the trail he has had virtually no side effects. The change it has made in his life is incredible. He attends school, he hasn't been hospitalized in over a year. He has been able to live his life and fight his battle. Without research this wouldn't be possible.
Our children deserve more and safer treatment. This is why we will walk every year and do everything in our ability to stand up to cancer and fight not only for Lincoln, but for all these families and children who need better treatment and a cure.

We need your help to be successful! Please join our team, register as an individual, or just make a donation to CureSearch for Children's Cancer on Lincoln's behalf. Together, we are fighting for the future, we are fighting for what every child deserves and every parent dreams of.

Thank you so much!

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CureSearch for Childrens Cancer

4600 East West Highway, Suite 600, Bethesda, MD 20814
meredith.miller@curesearch.org | (240) 235-2212