FIGHT WITH LEXI

UPDATE ON LEXI'S CANCER JOURNEY

Lexi will be going under general anesthesia tomorrow to have a biopsy of her liver. THIS IS NOT FOR CANCER, LEXI IS STILL IN REMISSION! AMEN! The reason for the biopsy is for 2 very important reasons. I will try to break them down the best I can for you!!!!

REASON 1: EARLY STAGE OF LIVER FAILURE

Lexi was starting early stages of liver failure, due to the lack of growth hormones that doctors have been truly expecting due to chemo and radiation treatment. So the plan is to do this biopsy and to see if Lexi has a growth hormone deficiency, which will effect the liver. If this does come back she does, Lexi will have to go on a Growth Hormone for the rest of her life. With the hormone she is taking a chance, small percentage, of getting a brain tumor. If she doesn't take the hormone the doctor said her life span probably would be 7 to 8 years, because of liver failure.

REASON 2: HIGH LEVELS OF IRON

Lexi showed very high blood iron levels in her blood. So the doctors discussed iron levels will also be tested for during the biopsy. I asked the doctor what could cause high iron levels so high, and they did say lexi had so many blood transfusions that it could affect the liver.

I hope the information was clear enough to everyone. We truly thank everyone from the bottom of our hearts that has been supporting and praying for Lexi during her Cancer Journey and also after, because everyday you have to be blessed and be thankful for a new day. I will definitely make a post sometime tomorrow, probably night 🌙. Again, thank you everyone. Let's get the PRAY WARRIOR'S TOGETHER!!!!
# FIGHT WITH LEXI

Just a little update on Lexi. I know it has been awhile, and I apologize. Lexi has been doing very well, God Bless her. We did find out she does have diabetes, we don't know if it will be 100% permanent, but doctors see to think so. Lexi had got sick right before Christmas and needed steriods for her lungs, which spiked her sugars. Since then she has needed insulin. Lexi also had major dental surgery to fix her teeth from the chemo, and also had ear tubes placed. The ear tubes were because, she kept getting fluid build up and getting sinus issues. Again, we hope this will help her, no guarantee.

I know this sounds like alot, but we are NOT TALKING ABOUT CANCER!!! Which is AMAZING. FEBRUARY 17TH will be THREE YEARS Lexi got BLESSED with her donors cells. We just have to stay positive, and Lexi says she keeps fighting.

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💛💛UPDATE OF LEXI:🧡🧡

I just want to give everyone a little update on Lexi, and sorry for the long post. I am just going to start for the beginning.

I am ALWAYS HAPPY to announce Lexi is still in REMISSION.

July 26, 2016 will be 7 YEARS that Lexi's and OUR Family Lives change 4 EVER. Lexi has had A LOT of chemo in the past 7 yrs. The chemo unfortunately gave Lexi multiple medical issues.

Many of you know she is legally blind from the cancer, and now most recently from chemo Lexi has developed late side effects. I will be honest it has been hard for her, because as the doctors get one medical issue under control they find something else, and all she wants to do is not have to see Dr's once a month.

To jump ahead, Lexi was to have surgery last Wednesday. She was just having a tooth pulled, that chemo destroyed. Well, the anesthesiologist would not clear Lexi for surgery THE DAY OF. They said Lexi's lungs did not sound clear, and putting her under anesthesia would be dangerous. She had wheezing and decreased sounds in both lungs. So from a scheduled surgery getting canceled, we did the UNVISIT TRIP to the ER. The emergency department doctor was great n was able to help, and we were not admitted, which was GREAT NEWS. Everyone agrees that this is all Asthma related, and with her immune system weak she needs a good treatment plan.

We see Lexi's Oncology Transplant Team on Tuesday which I am happy, because I know they will look her over, and everyone agreed Lexi now has to see a pulmonalist. We also have to get clearance for the surgery which is scheduled for August 30th.

Can I please ask all Lexi's prayer warriors to please keep Lexi in your thoughts. Thank you so much

Another great conversation with Lisa Damour, Ph.D.! This week on the podcast we talked about the emotional lives of teenagers.

🎗🎗TODAY IS THE DAY!!! THE DAY LEXI, HAS BEEN WAITING FOR. Lexi is having her TWO YEAR STEM CELL TRANSPLANT WORKUP. When Lexi was diagnosed with cancer for the third time the doctor's thought there was no hope, but with a MIRACLE, because she didn't have a certian mutation she was eligible for a Pherphiphal Stem Cell Transplant. The doctor's explained because of her history, this was going to be a TOUGH BATTLE and usually after ONE YEAR, they say children are safe from relapse. With Lexi they told us TWO YEARS. So, Friday February 17th was 2 years, and today they will do a full workup to see how her transplantis working. They will be checking everything in her blood, doing studies on her lungs and heart. 💛💛

💛I sit here writing this, and I see the fear in my daughter's eyes. She is the MOST POSITIVE TEENAGER I KNOW, but I know she is scared. I am asking all Lexi's prayer warriors please keep lexi in your thoughts💛

🎗🎗All results will not be back for about 2 weeks. 🎗🎗

💛🎗TO ALL LEXI'S PRAYER WARRIORS 💛🎗

I know I was suppose to write an update, but LEXI'S health is difficult. So sometimes I just don't know how to explain it.

Lexi does needs PRAYERS for tomorrow, and thru the weekend PLEASE. Lexi was diagnosed with osteoporosis and ostoepnea. She had a DEXA , bone scane, which confirmed this.

Everytime something is wrong with lexi, when she lost her vision, her thyroid issue, and also puititaury gland in her brain is damaged the doctors always say it is from the radiation or chemo. Lexi has beat cancer 3 times, she has being doing this for over 6 years. She is the strongest 16 yr old I know. (You make decisions to save your children, but these decisions turn into life long issues, it is BS)

So, tomorrow Lexi has to go to CHOP to have an infusion for her bones, but there is always a TWIST. The doctor that ordered this infusion, again to get her bones stronger. We don't want Lexi in a wheelchair. The symptoms of the infusion, and will also tell us that medication is working, Lexi will get FLU like symptoms, and more likely she will get a FEVER.

WELL, FEVER IN OUR HOUSE IS A NO, NO. LEXI IS STILL ON FEVER PROTOCOL FROM ONCOLOGY!!! Anytime Lexi gets a fever we have to go get an IV antibiotic. Lexi and I will be staying close to CHOP in case of a fever in the middle of the night. The doctors said after 48 hours everything subside. PLEASE PRAYER WARRIORS LETS START A PRAYER CHAIN FOR MY WONDER WOMAN 💛💛🎗🎗🧡🧡🎗🎗💚💚🎗🎗

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2nd day in a row at chop. Lexi would be miserable, but thankfully with her cousin be with her all week Lexi has been full of smiles.

Lexi will have platelets check again, and we also have a BIG follow up appointment. Today we see Dr.lui, who is Lexi's Ophthalmologist, is an eye doctor . He has been flowing Lexi for 6 years since diagnosed.

When Lexi was diagnosed, she had cancer on the optic nerves. With the cancer, and radiation it caused lexi to become legally blind. At our last visit, lexi had a MRI of the brain, and they saw something on the optic nerves.

They are unable to say if it is cancer or not, because they can't do a biopsy. It they do a biopsy, she will loose total sight in that eye. The oncology team doesn't think it is cancer, because she has no other sign of cancer.

So I am asking today PLEASE ALL LEXI'S PRAY WARRIORS TO SAY A PRAYER. We are hoping Lexi's platelets will be okay, and we hope we get some kind of answers from the eye doctor.

Also please pray for my two friends Melissa Gershman and TinaMarie Russian who children are battling childhood cancer, and their children need prayers also.

UPDATE::::

LEXI IS HOME RESTING FROM A LONG DAY AT THE CLINIC. She received platelets, but had to receive other topical medications to help stop her nose bleeding. HER ONCOLOGIST has no answers why this happened. We see Hematology next week. July 18th, to HOPEFULLY GET ANSWERS. BECAUSE, HONESTLY IF I HEAR I DONT KNOW ONE MORE TIME I M GOING TO BLOW MY LID.

IN 2 WEEKS, JULY 26, THAT IS THE DAY MY FAMILY'S LIVES LIVES CHANGED 4 EVER, AND NOT IN A GOOD WAY. N IT HAS BEEN A LONG 6 FRIGGIN YEARS. USUALLY, AFTER 2 MAYBE 3 YEARS YOU MOVE TO SURVIVERSHIP. WELL GUESS WHAT, WE R 6 YEARS N NEVER EVEN TALKED ABOUT IT. I M EXTREMELY, I KNOW I HAVE PTSD, MY NERVES R MESS, AND HONESTLY I HATE LIVING LIKE THIS. THEY NEED TO TELL ME WHAT IS WRONG WITH MY BABY GIRL. BELIEVE ME, IF I HAD THE MONEY I WOULD INVEST IN OTHER HOSPITALS.

PLEASE PRAY FOR LEXI RAE
A.K.A WONDERWOMAN

What a crazy day!!! Please pray for my baby girl. She woke up with a nose bleed, we r here at CHOP. They don't know why she is having a nose bleed. What a day....Will keep everyone updated..she is receiving platelets now.