Monroe is kicking cancers butt!!

For: Monroe Okola
Ontario, CA
Organizer: Ashley Estrin
Monroe is kicking cancers butt!! (Monroe Okola)
$63,731
of $150,000 goal.
Raised by 461 donors
42% Complete

The Story

Monroe Okola was born on August 15th, 2011… she is now 6 years old. Monroe is the daughter of Aaron and Leah Okola. She has a 17 year old brother named Jake and a 2 year old sister named Arden. Monroe is a beautiful, sweet, energetic and happy little girl who loves Disney princesses, riding her tricycle, going to pre-school, and buttered noodles. In early August “RoeRoe” started to not feel so well… she was lethargic, lost her appetite and just seemed like she wasn’t happy. Several doctor visits showed nothing really wrong. Then she developed a limp and a lump was discovered on her neck… this time she went to see a pediatric hematologist/oncologist… we knew something was very wrong. Monroe and her entire families world was turned upside down when on October 9th, 2015 they heard the words that no parents should ever have to hear… “your child has cancer”. Monroe was diagnosed with stage 4, high risk neuroblastoma. The doctors said she had a 50% chance of long term survival…

The family immediately started to frantically research her disease and what was the best course of action. They called and emailed hospitals all over the country who were specialists in neuroblastoma. It is a relatively rare form of cancer, striking only about 400 to 700 cases a year in the United States. The problem was that the family had Kaiser insurance and Kaiser generally does not allow you to go outside of their network. Kaiser has wonderful doctors and does great work, but Monroe needed a specialist. After some intense research, the decision was made that Monroe needed to be treated at Memorial Sloan Kettering Cancer Center in New York City. They treat more pediatric neuroblastoma cases than any other institution in the world and have a team of doctors who treat only neuroblastoma patients. Monroe is going to New York City asap…

November 1st, 2015 Monroe, Leah and Aaron arrive In NYC to start her treatment. They left behind their business and jobs as well as family and friends and all that is familiar to them… Monroe has received several rounds of high dose chemotherapy. She is having major surgery on January 11th to remove the tumors in her abdomen and her left adrenal gland is also being removed because it is covered in tumor. After she completes chemotherapy, she will have to endure radiation and then immunotherapy. The doctors have said this could be a 12 to 18 month process. The Okola family needs all the love, prayers and support they can get. Monroe is fighting for her life every day while the family deals with the incredible emotional and financial pressure that this horrible disease is causing…



For more updates, please visit the Team Monroe Facebook Page 

Thanks for your prayers and support...

Fundraiser Updates

Posted on September 5, 2017

Posted on September 5, 2017

September 5th, 2017 - Monroe is doing great!! She has been in remission for about 17 months now and is enjoying life as a healthy and happy little 6 year old girl! RoeRoe is in full time kindergarten and her only long term side effect from cancer right now is some high frequency hearing loss and she will be getting hearing aides very soon. Monroe is currently on the vaccine trial at Memorial Sloan Kettering Cancer Center in NYC and she has completed 6 of the 7 scheduled vaccines. We currently have 2 more trips to NYC scheduled in October and January. After she completes the vaccine we are considering our treatment options and are not quite certain what our next step will be. Although she is doing very well right now we must remain vigilant because neuroblastoma is a very stubborn disease with a high rate of relapse for those kids that are lucky enough to achieve remission like Monroe. However, we have been very blessed and are absolutely thrilled with how well Monroe is doing and we believe that God has a very special plan for this amazing little girl!

September is Childhood Cancer Awareness month so please do something to help raise awareness for all of the innocent little children battling cancer... we need better treatments and more funding for research and new therapies for these kids. Less than 4% of all cancer research funds are dedicated to pediatric cancers and that is just unacceptable... we must do better for our kids!

Thank you all for the love, prayers and support you've given to Monroe and our family over the past two years... each and every one of you have played a role in helping Monroe beat this disease and remain cancer free!!

Posted on November 21, 2016

Posted on November 21, 2016

November 6th, 2016 - Monroe made it through her 1st week of Hu3F8 immunotherapy treatment. Monday was really tough... a lot of pain... at one point she was basically screaming in pain for a few minutes which seemed like an eternity. She had very low blood pressure and oxygen levels but they were able to quickly treat her and get her back to normal. She was really
Loaded up on pain meds and did not eat or drink very well all week and slept a lot... most of the day often. Wednesday and Friday were better but still very difficult. She threw a fit on Friday when we had to give her some medicine and it basically went up her nose and she couldn't breathe properly for a few minutes so that was scary. She is bouncing back now and is doing much better today. Thanks to all of you for the continued love, support and prayers!! We can't wait to come home Wednesday and enjoy normalcy for a few weeks before having to do it all over again in early December...

Posted on October 28, 2016

Posted on October 28, 2016

Hi Team Monroe... sorry it took so long to update, we've been a little crazy here. So we've got really good news and a little not so great news. Monroe's CT, MRI, and MIBG scans were all great and showed no evidence of disease. However, her bone marrow test showed what they are calling "ganglioneuroma" which is in and of itself considered benign and not cancerous. So overall this is all good news and Monroe is considered NED still. However, the presence of this ganglioneuroma seems to have the doctors a little worried and they are not sure why it is there considering that her last bone marrow test was clear. It could be that there was recently active disease there (neuroblastoma) that has matured into benign ganglioneuroma... they just are not sure but it has them concerned. So they now want her to do two more rounds of immunotherapy... HU3F8. This is the "humanized" version of the antibody that was developed by Sloan. She previously did 6 rounds of the "mouse" 3f8. It's very painful and very tough to watch her go through but we feel this is the best course of action to knock out anything that might be there and not showing on scans or anything that may be developing. So she started daily injections of gmcsf which is an immune cell growth stimulator and on Monday she will start Hu3F8 which will go through Friday. She will have followup appointments Saturday, Sunday and Monday after immunotherapy so we will be here until November, 9th. She will have to come back in early December for round 2 and the she will scan again and hopefully be able to move onto the vaccine in January. Monroe will be spending Halloween in a hospital bed 😥 but we are hoping that the schedule will work out that we will be home for the holidays. Please pray that she gets through these painful treatments and that this does what it's supposed to and knocks any remaining cancer out... Thanks to all of you for the continuing prayers and support...

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