Hope for Helaina - Fight Neuroblastoma Cancer

$16,941 of $20,000 goal

Raised by 189 people in 8 months
Support Helaina on her quest for a CURE

Helaina is my niece- the youngest of three girls, and a ray of sunshine for our family, despite everything she has been through.

One afternoon last fall, Helaina started to act out of character. She was lethargic, with poor appetite and had a lump on her stomach appear.  Just two days after showing symptoms, on her second birthday, she had an appointment with her pediatrician. Helaina was sent for imaging due to a suspected hernia. The ultrasound found a mass the size of a football spread throughout her abdomen, surrounding her organs.  She was immediately sent to the hospital, and diagnosed with stage IV high risk neuroblastoma. The cancer had already spread to her bones and bone marrow.  She went home 12 days later after her first cycle of chemotherapy.  Our whole family was in shock.

Over the past year Helaina has completed 6 rounds of chemotherapy, endured a 23 hour abdominal surgery to remove over 90% of her tumor with a partial bowel resection, spent 6 days intubated in ICU, completed physical/occupational therapy, struggled through 4 cycles of immunotherapy, and received one dose of MIBG radiation.  She has had numerous hospitalizations for neutropenic fevers, thrush, pneumonia, procedures and surgeries.  This all, of course, has taken a huge toll on her and the family.

Unfortunately, after one year, Helaina's cancer has only moderately decreased. Out of treatment options in Texas, she will soon go to Memorial Sloan Kettering in NYC to pursue a trial therapy and a new approach to attacking her stubborn refractory cancer. This is her best chance to beat this monster.

This new endeavor will require much more than ever anticipated, but we cannot give up hope. Helaina will need to travel back and forth from Texas to NYC, to receive treatment and spend precious time with her two older sisters and family between treatments.  Costs will include flights, food, hotels/accomodations, car transportation, and medical expenses. Funds will also be used to support her family at home while her mom travels with her. 

Donations will help fund Helaina's treatments, help her family with expenses at home, and provide stability, while giving Helaina the chance to live.

Support Helaina in finding a cure.  Everything helps! Will you be Helaina's hero?

You may also support Helaina by purchasing a shirt, sweatshirt, or tank!  

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Video Music Credit: Tim Halperin 'Forever Starts Today'
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Here is the latest update on Helaina! She’s showing improvement! A long road ahead still, with active cancer cells but she is responding to the trial therapy and her quality of life is excellent. Thank you all for your continued support Follow Helaina on social media, Facebook and Instagram @ Hope For Helaina

“This sleepy angel had scans very early [Wednesday] morning to update her progress on her treatment. We are currently waiting for results- MRI of the brain and PET scan. Her MIBG scan completed in NYC came back with improvement! Her curie score dropped from 14 to 10! We are so happy about that!! Also, her bone marrow continues to be negative for neuroblastoma. She has had clear bone marrow for a year now.

She underwent an MRI of the brain. The brain is a likely place for neuroblastoma to grow in progression or in relapse. Helaina isn’t in remission, so growth in the brain would be progression in her case. She also completed a PET scan that her insurance denied as she was starting the scan, despite a peer to peer review with her Texas oncologist. The denial is because it is experimental for her type of cancer in standard, past research (which there isn’t much of in any case), but Helaina is in a trial that utilizes the scan to identify mature or active disease. They have approved them in the past. She has had two before (the last one before she started the trial, 6 months ago). We will have to appeal this decision. The scan was already completed and costs nearly $6000 if an individual has to pay.

We have some mountains to climb, but the scan is part of the trial and we are hoping we can get the decision reversed by getting her NYC doctors more involved. Keep thinking of and praying for this sweet girl. We are so proud of her. Other than the port needle, she didn’t complain at all. She was sugar free for about 12 hours for the PET, and she was in a good mood. What a blessing. Her 6th cycle of the trial antibody/immunotherapy starts in less than two weeks.
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First, I would like to thank everyone for your ongoing support of Helaina. This campaign has taken off better than we could have ever hoped for when we started. We know plenty of people love Helaina, but the sacrifices you all have made to help her along her journey toward a cure are astonishing, truly. I hope you know how much your help means to us- your donations, your prayers, your logistical support through all the steps it takes to start traveling for medical treatment.

An update on Helaina is overdue! So much has been in the works with her doctors. If you follow on Instagram or Facebook, you have seen she made a week-long trek to NYC last week for testing. She had a clear MRI of the brain and no evidence of disease in her bone marrow. This means her disease has NOT progressed since she stopped treatment in Texas.

Now for the hard part. Helaina is definitely not cured. She still has some soft tissue disease and metastasis on her bones that needs to be eliminated. There may be cells of neuroblastoma hiding beyond what the scans can find as well. She will have to endure several months of intense treatment in New York City, starting next Monday.

Helaina and mom are flying back on Sunday, on one-way tickets because the start of her treatment is such an undertaking. She begins her new immunotherapy on Monday/Wednesday/Friday of next week. The immunotherapy’s main side effect is nerve pain and it will be a process to discover what will control her pain for the first cycle at least, when this is all new. They will give her pain medications and pre-medicate her to limit the amount of reactions she may have to the drug, allergic included. On Tuesday, Helaina is doing a radiation trial where they will fit her with a mask under anesthesia. There are several spots in the bones around her eyes that they want to target, along with her abdomen and pelvis. After one week of immunotherapy, we expect two full weeks of radiation where she will go under anesthesia every day, twice a day so she can be perfectly still. Going under anesthesia is never fun, because Helaina can’t have her beloved milk bottle for many hours prior to the procedures. That baby loves her milk!

Unfortunately, another part of her treatment calls for daily injections in her thighs to boost her white blood cells, in order to target the neuroblastoma cells in her body. She had her first injection today and it is heartbreaking to have to give them to her, and to know another one is coming every day for many days to come. This is a new drug for her too, and she had some nausea and vomiting this afternoon following the injection. Hopefully that doesn’t get any worse. Otherwise, Helaina is a happy and normal child with very few complaints. We were able to celebrate her birthday (which is actually this upcoming Saturday 9-22!) and we are grateful for the time we have had and continue to have with her.

After one week of immunotherapy and two weeks of radiation, Helaina will be ready or close to ready for a second cylce of immunotherapy. Helaina and mom are planning to stay in NYC for a month at this point due to the treatment schedule, and have yet to book flights back to Houston. We are all pretty bummed about Helaina being gone for a month, and especially sad for her sisters who have to say goodbye to her, and their mom, while this task is underway. While this is necessary, it will be a challenge emotionally and financially. When Sarah isn’t able to work, the steady income that once kept things running at home will be gone. That’s where this GoFundMe and all of your help comes in.

Please continue to keep Helaina and her family in your thoughts and share her story. Every donation matters with so much unknown ahead. You all are Helaina’s heroes and we can’t say ‘thank you’ enough!
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WOW! Heroes! You all are amazing! Thank you all from the bottom of our hearts! We are so impressed by your love, kindness and participation in this time of need. We truly did not expect such generosity. You all have done such an awesome job of helping Helaina and her family. I have decided to increase Helaina's goal to help her even more, if possible. It's a long road ahead, but YOU are making a real difference for this family by supporting Helaina and the journey toward a cure.

New update on H: She completed a PET scan on Wednesday, as requested by NYC medical team. The results are in, and we heard Helaina's NYC oncologist "really liked the results" and would like to start her on the trial therapy right away. The plan is to head to NYC next week for additional tests to enroll in the study. Helaina will need an MRI and bone marrow aspiration test under sedation. We are waiting to hear from schedulers for a definitive schedule, to book transportation and accomodations. We are holding onto hope that this is the next step for this sweet baby to get well.

Please share, share, share Helaina's story on your social network platforms, to support her cause and raise awareness- and what a perfect time because September is Childhood Cancer Awareness month! Every single share and every single donation, even $5, helps!
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Raised by 189 people in 8 months
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