Elevate Wilms—our kids deserve more.

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  Roberto Camacho was an incredibly sweet, silly, kind and handsome boy, with the biggest smile!

  We had the honor of introducing him recently as one of our latest Elevate kids [Meet Roberto  HERE]  during ‘Kidney Cancer Awareness Month’. 

    Roberto’s mom, Amy, remembers “Roberto was diagnosed with stage 4, diffuse anaplastic Wilms tumor, but never did we think he wasn’t going to beat it! When he was first diagnosed we were told it was Wilms tumor, the good one, and immediately started researching. A week later we were told it was diffuse anaplastic Wilms tumor and his chances of survival were a lot lower.

   A year after being diagnosed, Roberto was still in treatment, “The problem was when he was supposed to finish the treatment, UH3 [Learn more about UH3, a chemotherapy protocol below], a year later—it wasn’t working very well. Some tumors would shrink but others, in his lungs, would grow. After this we were put on hold waiting weeks for another trial or treatment plan, which I think hurt him because it allowed the tumors to grow because they were so aggressive.”

    “If there were more options for relapse and for children with anaplastic Wilms he would still be here. We tried another combination that I had found by researching and talking with other families whose children had relapsed and gave the info to our doctors. We tried it for a few weeks and when it wasn’t working we tried another combination of chemos, and so on. We waited for another trial, again, as I reached out to top doctors, got advice and tried tiredly to find more options until the tumors grew too big. He was now in pain and on hospice. 

    We would always tell others we will fight until he stops smiling. That was our family motto. The last thing you want is to see your child in pain or suffering and at the same time you don’t want to give up. 

Give up hope or stop trying. But at what point do you stop?

 This should not be a decision a mom has to make about her 7-yr-old. No parent should have to do this. So, we made him as comfortable as we could. Eventually, he closed his eyes and slept for 4 days. I watched him sleeping, praying that he would open his eyes and wake up that we would get that miracle.

I finally whispered to him that he could go; he didn’t have to fight anymore, and on the last day we watched him take his last breath.”

 He did all of this but never lost his huge smile. 

[Learn more about Wilms tumor HERE]

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  “A life that touches others lasts forever.”

   Roberto’s family began ‘Roberto’s Smile’, established to bring smiles to children affected by childhood cancer in their local hospital, Valley Children’s Hospital. His family and friends work tirelessly to continue providing joy in the form of gift cards, gift baskets, and family support items to others facing such hard circumstances.

   Roberto’s mom, Amy Camacho, shares with Elevate, “One of the reasons I do this is because when he was in the hospital, he was always drawing and then giving his pictures away to the doctors and nurses to make them smile. 

   If he just knew it was their birthday or they were having a bad day, he would say, ‘Mommy, I wanna draw a picture for her/him!’ 

  Roberto also drew for a few kids in the hospital; after a walk around the floor, he would see them and want to draw for them.

   He would always say, ‘When the bad guys are gone’ that’s what he called his tumors- bad guys, ‘can I bring toys and food to the kids and families?’

    I would say, ‘Yes baby, as soon as you beat the bad guys, we can still come here and give the kids stuff to bring smiles to their faces.’

 He would just smile and say ‘ok’.  

   That’s why I knew once he passed, I had to continue to bring smiles to others just like he did the whole time he was in treatment. I don’t draw as well as he did, but I continue to do what he would want; we encourage “An Act of Kindness in Honor of Roberto”.  

    We go out and do kind things whether it be paying for a coffee or a meal in the drive thru, leaving a nice tip for a waiter, simply opening the door for someone, or smiling and saying ‘Hi’! We hand out the cards and ask them to pass forward the kindness in memory of our sweet Roberto.”

    In addition to this, they are pleased to be a part of an organization, like Elevate that seeks to specifically address research Wilms tumor (kidney cancer), which is vitally important. 

  “I would not wish this on anyone and it is happening too often to our kids. We need to have more funding and find better ways to help children

so families don’t have to go through this. This is why it is so important to fund and help non profits like Elevate.  

[Visit Roberto’s Smile HERE] 

UH-3 Protocol

UH-3 protocol for Wilms tumor is a combination of multiple chemotherapy drugs used alongside radiation and surgery for newly diagnosed diffuse anaplastic Wilms tumors (DAWT) and Relapsed Favorable Histology Wilms tumors (FHWT). Memorial Sloan Kettering shares a bit of information on this, “Patients with newly diagnosed stage II-IV DAWT or FHWT that relapsed after initial treatment with 2 chemotherapy drugs will receive a drug combination called UH-3 (vincristine, doxorubicin, cyclophosphamide, carboplatin, etoposide, and irinotecan), in addition to surgery and radiation.” [Link HERE]. 

   These individual chemotherapy drugs all come with their own side effects and warnings; when combined, they can not only potentially kill cancer cells but incur immediate harsh and lifelong devastating side effects that our children and adolescents must then face.  Surviving a treatment such as UH-3 is daunting, which is why our kids need better treatment options.

Elevate has many families that will be sharing their own stories of ‘surviving‘ in the coming months, one such UH-3 survivor’s parent shared this photo of what daily life now looks like for their Wilms tumor survivor after being on UH-3 for relapsed Wilms tumor.

Surviving looks much different than you may think.

   Elevate is seeking dramatic improvements for those diagnosed with childhood cancer, like Wilms tumor. From diagnosis, through treatment, on to survivorship, and in some cases the end of a child’s life. Elevate is reimagining what treatments for childhood cancer can look like and we invite you to join us, by sharing who we are, what we do, and the stories of these families, like Roberto Camacho and donating to our mission ahead.