Monica delos Reyes - Photo Album

HERE IS ALEXA’S STORY
Alexa a.k.a Princess Lexy is now 13 years young. She has been fighting cancer for over a decade. She has brain cancer with an inoperable tumor and also has neurofibromatosis type 1 She is very caring and loves making people smile and is brave and an inspiration to so many people. She is silly and loves to tell jokes and sing songs. Her laugh and smile melt any heart. She is strong and never gives up even through the pain. She is a lovely warrior princess.

Over 12 years ago, May 5th 2004  Alexa was progressing and growing at a normal pace. However, we noticed that she stopped trying to walk and was dragging her left leg as she crawled.
After her first birthday, We became concerned. When Alexa started clutching her left hand tightly to her chest as well. We were prompted to call the doctor. After running a few tests, we were immediately sent to get an MRI that confirmed the presence of a large tumor in Alexa’s brain.(As big as a small apple)  Emergency surgery was scheduled to remove the tumor, which had grown so large it was pushing her brain to the right side of her skull causing paralysis on her left side.

She has been through more in her 13 years than one can even imagine: she has endured 11 brain surgeries, a brain shunt, an external ventricular drain, a third ventriculoscopy, a G-tube,  an NG tube, a Mic-key button, 3 ports, EEG, colonoscopy, audio hearing tests, Physical & occupational Therapy, chemotherapy since she was 14 months old, pneumonia, a hole in her lung, seizures, and a surgery which rendered her totally blind.
After talking with at least five top neurosurgeons in the country they have all come to the conclusion that Alexa’s tumor is inoperable and they will no longer do any surgeries on it as it would be dangerous, since the tumor has basically engulfed all of the live vessels, and the vessels that feed the tumor, and they wouldn’t be able to do differentiate between them. 🙁

We are not able to do radiation either because it can cause secondary cancers in patients with NF ( neurofibromatosis) she could develop Leukemia.

As complications of treatment, she now has Permanent Endocrine issues!

DEFINITION ……. (The endocrine system chemically controls the various functions of cells, tissues, and organs through the secretion of hormones.)

She also has hypothyroidism, which makes her cold all the time, and therefore does not control the temperature of her body. Medicine has to do that. She has adrenal insuficiency, and a couple other issues that can only be maintained with medication.

Like DI, that is diabetes insipidus. It has nothing to do with diabetes but the kidneys no longer correctly expel the fluids from the body. Therefore we must totally measure and when the urine is clear we must give medicine so that she doesn’t deplete her whole entire body of fluid. If we continue on without medications every single bit of her fluid in her body would be expelled because the kidneys are no longer functioning properly and able to distinguish when to stop the Kidneys.

Lexy takes 12-15  nightly medications, & 8 in the AM.

She also has left sided weakness in her leg, and her left arm and hand are paralyzed.

She is now  seeing a physical therapist who is getting her a new foot splint (AFO) and a splint for her hand as well . Without the foot splint  her bone could drop and she would have permanent pain in her foot.

She has had MRIs every three months since her diagnosis in 2004.

In addition, Lexy has endured thousands of port sticks, MRI’s, CT scans, ultrasounds, angiogram, EKG tests, and months and months of ER and hospital inpatient stays. Recently she had an EEG to try to find the seizures.

Alexa’s 2012 surgery unfortunately left her blind.(ay 9 yrs old) and all the before mentioned Endocrine issues also came from THAT Surgery.

FRIDAY THE 13TH APRIL 2012.

Since becoming blind, Alexa has learned Braille to read, the abacus to do math, and tries using a cane to help her get around. But she has one hand to hold it and no other hand to feel around for safety 🙁 just another thing Cancer has taken away 😭

Our family is trying to look into a therapy / guide dog for her future . Her life is so much more complicated now. But she still never gives up ever. And She will not ever. (NEGU)

Princess Lexy is so brave and strong.

That is what she’s always wanted to do Inspire others and possibly with her story and awareness help cure others, plus herself in the future of a perfect world. 🙁

Despite all that she has been through, Alexa is sweet and caring and loves life. She is brave and always worried about other kids in her same situation.

She always asks about the other children. She makes her friends videos to send them cheer.  She also sends  birthday videos  to all her  Facebook friends  on their birthdays .

She gets through her journey with faith and her belief that God will heal her it just might take a little time. ☝🙃

Alexa loves to hang out with her epic brother Cameron. (17 yrs old)
She likes bling, anything shiny Gold & Pink & loves making cards for all her sick friends and for thank you’s to all her beautiful and wonderful supporters and prayer warriors. She loves dolls, princesses, music, She is just a girly girl! She loves
THE COLORS PINK, PURPLE, AND GOLD. When she started to lose her hair during the last chemo she asked me if she could just dye her hair pink (her favorite color) instead of Shaving it. That way she could feel beautiful until every piece falls out. I joined her in that .
When she receives a bunch of “likes” on her page (we don’t call them “likes,” we call them “prayer warriors, & Journey buddies”) it makes her beam.
It melts your heart to know something so small can make her day. So if the only thing she received was “likes” on her page, she would jump for joy and be appreciative for all the new friends wanting to share in her journey and help her to “keep on keeping on.” & to NEGU
She hates Cancer,(SHE NAMED HER TUMOR GOOMER) SHE DISLIKES most veggies, being sick, & mean people. She hates it when people talk down to her when she is too tired to walk and uses her wheelchair. She says, “my brain is normal, I just have challenges to overcome, and my body has parts that do not listen to my Brain anymore.
Our family continues to pursue clinical trials and new treatments for her. Our  hope as a family is that there will be a cure and Lexy can grow up and live a beautiful life full of love and someday have a family of her own.

Lexy  held a lemonade stand for ALSF during Lemonade Days a few years ago!
She always tries to make money for Children’s Cancer Awareness & her friends.
SHE HAD THE VERY FIRST EVER RAINBOW LEMONADE STAND SELLING LEMONADE IN ALL THE COLORS OF THE RAINBOW. She did this with her friends and family. It brought media attention to the stand. She was on the news and she talked about Alex’s Lemonade Stand.
Is everybody on Facebook for a dollar to get cancer booty she gave that money to the hospital that amounted to $3,000 with the online donations that was given to the night challenge if you’ve heard of that for Doernbecher Children’s Hospital. She also has been at your Hyundai Hope On Wheels handprint event for the past three years.
Lexy’s Hero Quote:
“With God’s Help I will KICK CANCER’S BOOTY!!! (Hii-Yaa)” ** Kicks Foot **
Cameron, Lexy’s awesome sibling said: “We will never give up! we will always have faith and share her story to help others., while searching & striving for a cure”
NEW UPDATE
September is Children’s Cancer Awareness Month symbolized by the GOLD RIBBON & the Color Gold
May & Sept. are the most important months for Alexa! she loves to do awareness videos and tell everybody that we need more funding for children’s cancer more than 4% which is what we are given now for research by the NCI out of ALL funds raised for “Cancer”
only a little more than half a percent (1/2 %) goes for Children’s Brain Cancer research.
We made it through almost 5 treatments of the umpteenth chemotherapy treatment in Oregon  and then once again the tumor grew too big to continue.(RELAPSE #7) We had found a another trial in Pittsburgh Pennsylvania it is called a vaccine trial where it tries to convince the body to attack the tumor by placing protein in places on the tumor through injections in the leg. Trying to train the body to use its “soldiers” WBC to treat the tumor like a infection, & eradicate it (I theory anyway)
We started this trial in November 2015 going to PA every 3 weeks. We are still currently on it going to Pittsburgh every 6 weeks .
We just finished treatment #13.  Even though her tumor remains stable as far as trial standards show, (Not growing more than 25%)  her tumor has grown enough to change her.
She is fighting strong but very weak tired and now her memory is affected as well as mobility. Sometimes not able to form and convey a sentence.
But, even when she’s only awake for a few hours a day now, she still says she’s never going to give up (NEGU) and that she will continue. We will find a cure someday for her and all the kids like her.
They have since found out she has seizures when she’s sleeping, & started her on new medications for that.
We will remain strong in our faith & belief that Lexy will be cured someday it will be a long journey but we are prepared to take it…..TOGETHER.

Our family, Friends, prayer warriors and Journey buddies!
Thank you for being on this Journey to a cure.
Information provided by Monica delos Reyes,
Lexy’s Mom
Updated September 2016

I KNOW THIS WAS LONG…
But with a story like that I think and hope that you would choose her to show her picture in Times Square we had treatment in New York for 10 months we know everybody there and Times Square was one of her favorite places to go before she went blind.

Thank you for reading Alexa’s Journey
www.facebook.com/love4lexy

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