Tumor Talk

Tumor patients regain consciousness after surgery

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Updated : Tue, January 10, 2012,3:07 PM (GMT+0700)

Thach Thi Sa Ly pictured before surgery.

Photo: Tuoitrenews

Two Vietnamese women, who were recently operated on by American surgeon McKay McKinnon to remove their tumors, have regained their consciousness, Dr. Tran Quyet Tien, deputy director of Ho Chi Minh City-based Cho Ray Hospital, announced Monday.

Both patients, who have been diagnosed withneurofibromatosis (human genetic disorder), are now able to open their eyes and move their arms, hands, legs, and other parts of their body, the doctor said.

Kieu Thi My Dung, who carried a 1.5 kg tumor on her face for years, is making a good recovery and can now breathe and drink milk by herself.

After removing Dung’s tumor on January 6, the 20-member surgical team led by Dr. McKinnon then used a part of the patient’s skull bone to recreate her right eye socket which was seriously damaged by the tumor. The team also repositioned her right cheekbone into a more symmetrical position with her left one and recreated the ciliary muscle of her right eye.

Her right ear would be also recreated, the doctor said.

Meanwhile, according to Dr. Le Hanh, head of Cho Ray’s Plastic Surgery Department, 36-year-old Thach Thi Sa Ly, who had plenty of bubble-like lumps covering her body from toe to face, is expected a slow recovery since fluid still leaks from her incisions and could undergo more surgeries to remove the remaining tumors in the future.

Dr. Hanh said Ly’s incisions do not show any symptoms of infection; however, she has to receive milk through a gastric fistula.

Dr. McKinnon, with assistance from a team of doctors and nurses of Cho Ray Hospital, on January 7 removed a total of 10 kilos of lumps mostly from her forehead, chin, hands, buttocks and around her eyes.

Ly’s surgery is the third consecutive operation that Dr. McKinnon performed in Vietnam.

On January 5 at HCMC-based hospital, a 60-member surgical team led by Dr. McKinnon successfully removed 82-kilo tumor on the right leg of 32-year-old Nguyen Duy Hai, who hails from Da Lat central highlands city.

Hai is recovering well and now can eat and breathe by himself.

Dr. McKay McKinnon and his wife left Vietnam for the US on January 8.

Braces!

With Riley's permission....

 She has braces!  

It was cute to see how excited she was for the day to come!  

We have a LONG way to go...Including oral surgery to remove two impacted adult molars....But she is in good spirits!

"A dream come true", Riley says

She's Hideous!

As I dropped kids off at school today, I couldn't help but overhear this mother commenting about her daughters birthmark.  "It's soo ugly...it's hideous!" the mother said, as she pointed at the quarter-sized brown, slightly raised mark on her little girls cheek. "Just look at it...I'm sooo glad we are getting it removed!"

I just stood there.  Biting my lip.  Maybe I should have said something.  I doubt it would do any good though.

My mind just went to my family and the countless birthmarks we face.  The tumors.  I have never once considered them "ugly" or "Hideous"...And would NEVER point them out, and shame my child, like this woman did.

To me, despite the tumors, the birthmarks, I am a work of God.  I am not a mistake...nor are my children.

I was thinking, as I was listening to this woman go on and on about how her daughter would "Never be taken seriously", with this mark on her face... How she would handle a diagnosis of Neurofibromatosis.

When I came home and told my hubby about this, his reply was awesomely true.  "You handle, what you are given".  To that mother, her child's birthmark was ugly. (Even though I disagree totally with how she handle it...it was HER truth)

I live in MY truth, that MY children are beautiful.  Birth Marks, Tumors, Deafness, Scoliosis...whatever NF brings.  My job isn't to change people, and how they look at themselves....My job is to set an example, with MY TRUTH and hope that it helps people use what they already have, to change themselves.

Thrive On!

Brain Tumors and Neurofibromatosis

We have two little friends, that came into our lives in 2010.  We never could have imagined how close we would become.  In 2012...We plan on saying goodbye to these friends!

ADHD Relief!

For YEARS, I was that mom who said Iwould never medicate my child, unless it was for something I had nocontrol over medically. I kept repeating my belief to myself overand over...While my daughter's pediatrician listed of possiblemedications to treat her ADHD.

“NO!” I thought...”I'm not goingto do it!”

We have had a lot of experience withADHD medications, but not a lot of luck when dealing with my oldestson...So I was very hesitant to begin the process all over again.

But as I sat in the exam room, with mybouncing-around-the-room 9 year old, watching her hang upside downfrom the swivel chair...I thought, “What the heck?” and decidedto accept the prescription for Ritalin.

Rachel has a lot more going on thanjust ADHD. She also hasNeurofibromatosis and Sensory Integration Disorder. Both of whichare highly complicated and difficult to manage.

Ifilled the new prescription and planned on starting Rachel the nextmorning. She and I talked about how to swallow the small pills andeven practiced with tic tacs....She was just as excited as I was--

Butthat didn't last long-

Atfirst I was thinking it was Rachel's stubbornness not allowing her toswallow the pills...after day 1, 2 and then 3, I realized thatswallowing her pill, was not going to happen.

A callto Rachel's Doctor and a quick change to capsules (so I couldsprinkle the pills into applesauce or pudding) was surely going to bethe answer. But that didn't work either....Rachel Hyper sensitivityto taste and texture had her gagging and throwing up her pills.

Iteven got to the point where Rachel would stop eating her food,because she was afraid I had “hidden” her pill. I was ready togive up...And Rachel was too!

Thenour doctor called with another possible solution. A patch. Worn for8-9 hours a day and removed at night—No pills, No Gagging!

I wasin! Rachel was excited too! I filled the prescription right away,and brought home a box of patches, and showed Rachel where it wouldgo and how it felt.

Wehave been on the patch for a couple weeks now, and while I do notnotice a huge difference, there are minor changes that we see.

Sometimesit takes some “gagging”, to get the right answers, or the rightkind of care. I know for me and my family, we have done A LOT oftrial and error when it comes to our health. We have even “fired”some of the doctors we have gone to, who just don't understand theneeds we have.

Thepoint is...To keep going until you get the answers you arecomfortable with...To be heard, to be understood...And to Never GiveUp!

ThriveOn!

Rachel showing off the patch on her hip :)

Christmas 2011

Christmas has come and gone.  It was such a great Christmas...Even with a few of us down with the stomach flu. :(  We had an amazing early Christmas gift, given to us by way of the results from Bailey's MRI.

Dr. Rush passed us in the halls, before our appointment with her...She gave us a quick "thumbs up" and told us that Bailey's MRI looked "good".

Good...Means stable.  Which is not just GOOD, it's fantastic!  

This was the best Christmas gift I could ask for!

The anticipation for Christmas to come...had my kids so excited...But the stomach flu halted that excitement for a few of us.  I was just waiting for it to hit EVERYONE in the family...But thankfully it didn't.

The holiday got off to a GREAT start with Christmas Eve dinner...That was delivered by volunteers from a wonderful organization called 'There with Care'.  TURKEY, stuffing, sweet potatos, green bean casserole, pies...the works!

It was enjoyed by the entire family...Including a family member who flew in from California to visit us!

We enjoyed Christmas movies and our traditional read of 'Twas the Night Before Christmas.  The kids set out cookies and egg nog for Santa and were asleep by 10pm!

Just before they went to bed, the kids got to open up a gift each...then a family gift.

 "POPCORN OIL?  Are you Serious MOM?"

 Riley being a goof...."OMG, MOMMY, POPCORN...JUST WHAT I ALWAYS WANTED!"

Ohhhh....Now we understand!  A Popcorn Popper!  AWESOME!!!

 Christmas morning--the kids woke up to a living room with 4 new bikes!  Braden, Riley, Rachel and Brook all got bikes!  Thanks to 'There with Care' for full filling their wish!  They were soooo excited and wanted to go right outside to start riding them!

It's Not Cancer, So Why Chemo?

"Does Bailey have Cancer?"

The simple answer to that question is No.  But if you want to pull up a chair, I can explain to you what Neurofibromatosis is, and how it has affected my 15 (gasp!!...ALMOST 16 yr old daughter)

When I heard the word "chemotherapy", my heart sank.  I never thought it would happen to us!  Not MY daughter!  But there it was.  

Surgery was too risky.  Radiation not an option.

If we chose NOT to do chemotherapy, the tumor, that lays growing, deep in my child's

 brain could take her life.

Time stood still, the day we were told about the year long treatment plan of chemotherapy.  

Anyone who has been in this situation knows exactly what I'm talking about.

I was confused and filled with questions.  Why chemo if this isn't cancer?  The answer to that was that chemo would hopefully stop the abnormal cells from growing...those abnormal cells being the NF related tumor.

It didn't feel real.

We are now 9 months into treatment...With no real news to report except that we are stable. (for now)

Our 3rd month into chemo, we got news that Bailey's tumor had grown...Devastating news, and what was worse was hearing that we needed to switch to a stronger type of chemo....Stronger chemo meant more side affects (Nausea, Hair loss, Bone pain, Low blood counts)

Chemo treatment is a bit like finding the right pair of shoes...Sometimes, it takes "shopping around", to find the right fit.

  

But I find myself holding my breath until the next MRI...What will the next results show?  Where will we go? What will we do?

Things with Neurofibromatosis can change in a heartbeat.  One moment everything is stable...The next, we are rushing to find a different treatment plan.

It's a roller coaster ride, of endless ups and downs.

For now...The chemotherapy has saved my daughters life.  

 While she doesn't have cancer...

She has a tumor that went from "nothing"...to "something" in just a few months.

And I while may hold my breath until the next MRI...I know that I am not the one in control of any of this.  My faith and attitude are the only things that I CAN control.  All I can do is trust and believe that whatever the results are...We can get through and deal with them.

Merry CHRISTMAS

THRIVE ON!