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Tiara’s Story

Tiara is a lively, energetic 5 year old who was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) a rare brain tumor in February 2010.  She continues to fight this deadly tumor in hopes that soon a cure may be found.  Her story continues in the background story...



It all began around January where every morning Tiara would wake up and complain of her neck hurting her.  She then began to tilt her head to the right which friends and family pointed out to me.  I thought it odd and took her to the doctor as a walk-in patient.

The doctor assured me that it was just a sore neck from her sleeping on the pillows and that it should go away.  He prescribed some ibuprofen for the pain in the morning.  After a week or two my daughter still complained of the neck pain and so I decided to take her back to the doctor.  The doctor this time ordered a CT scan of her brain. 

The day came for the scan and though my daughter was scared she cooperated and had the scan done.  I took her back to the daycare and I went back to work.  Just as I reached at work I got a call from the doctor telling me to drop everything and take her to the hospital, a mass was picked up on the CT scan.  I was scared because I didn't know what to expect.  That night my daughter was admitted into the hospital I cried a lot during the nigh because the doctors wouldn't tell me what was going on I had to wait until the next day when the MRI was done.

The next day 02/25/10 the MRI was done and a group of doctors all called me into the room to discuss the MRI. They told me that my daughter had a brain stem tumor and that they wanted to perform a biopsy to see whether it was cancerous or not.  I broke down in tears.  It was not what I expected!  My daughter was completely normal, no prior sickness, no problems during pregnancy and delivery.  What went wrong, where did this disease come from? Did it run in the family, is it my fault.   I felt so lost and confused!

The biopsy was done a few days later and the reults revealed that it was a Stage 2 meaning it was a slow growing tumor.  I somewhat felt relieved.  The next step was to start chemo (Carboplatin, Vincristine, Temodar) for around 18 months.  She had her port put in and started chemo.  So, from March she started and she got sick and was hospitalized in May and they did an MRI which showed the tumor to be the same size.

Tiara had a wonderful summer, she went to Playland and Six Flags and went to Camp Sunrise a camp for kids with cancer.  In the middle of August last month as soon as camp was finished she took sick again with a terrible cold and problems with her balance.  The chemo caused problems with her balance and she became so weak and lost so much weight. Tiara was literally skin and bones. 

Another MRI was done and it wasn't too good.  The tumor had continued to grow and the only other option was to do radiation to prolong her life (several months to a year was given).  I decided to get two second opinions and sadly it was the same prognosis.  I decided to switch to another hospital which had more options open to me in terms of clinical trials as the one we were going to had none.

My daughter had a shunt put in her head because fluid was building up, and we are now in the stages of organizing radiation for her.

She is also on steroids (Decadron)  which has opened up her appetite tremendously.  She began Kindergarden this month.  She has some separation issues as she is very clingy to me but she loves school nonetheless.
She is currently doing well, can't complain everything is still intact for her her motor skills, balance everything is perfect, Thank God for that.

I have decided to try the Ruta Graveoleons and Calc Phosphorica homeopathy medicines which I looked up on the internet.  I am searching for all options for my daughter.  I pray a lot, trusting God to make the best decision for my daughter.

Latest Journal Update

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Two years ago today my daughter breathed her last breath.  

It's hard to believe that two years has gone by when I feel like it was just yesterday.  I still miss her the same way, still grieve the same way, still smile and cry at the memories the same way but I just have gotten better at dealing with it as time passes by.  I don't hesitate to talk about her with friends, family, strangers because I never want her to be forgotten.  Oh how I wish I could pull those cheeks :)

A lot has happened this year.  I got married to Tiara's Dad on July 19th, it was one of the happiest days of my life. We are now trying to start our new lives together.  I am currently in nursing school and I have one more semester left before I become a nurse.

 It has been long overdue, but Tiara's gravestone is currently in the making and she will share the tombstone with her great-grandmother as they are buried together.  I will be sure to update with that.

Christmas is especially hard for me, more than any other of the holidays because it was my daughter's ultimate favorite and because she passed away just 5 days short before it.
 I don't celebrate it, I try not to listen to any of the songs, I can't bring myself to put up the Christmas tree because the last time I put it up it was Tiara that helped me with the decorations.

Right before Tiara passed away I had put my Ipod  to her ear and played the Christmas song that she previously requested I play every night for her "I'm getting nothing for Christmas". As soon as the song was finished she took her last breath and smiled. It was the most  peaceful but also the most painful thing I could through. She was happy that I played her favorite song and now she could leave in peace. Tears well up in my eyes as I type this.

I feel very lonely this time of year because I enjoyed buying her gifts and watching her face light up with excitement as she opened them on Christmas Day.  Without her here, it is just a holiday that I wish would pass by really fast, get it over and done with. I don't know how long I will feel this way but I hope it is short-lived.

As the year is coming to an end, I can say my life has been going in a positive direction and I cannot complain, I am starting to feel happy again.

I wish everyone a very Merry Christmas and may all your dreams come true in the New Year!