My 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.


Nadine Parsons posted a new journal entry.

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 ... Read more

Kim Vaughn signed Tiara's Guestbook.

It's good to hear from you...congratulations on your marriage!  You have been busy over this past year.  I'm sure Tiara would be happy to see all you've ... Read more

Shannon Hadac signed Tiara's Guestbook.

So happy to hear an update. Think of you all so very often! It sucks. What you said about the same grieving is the same for use too and this is our 4th Christmas without ... Read more

marla miene signed Tiara's Guestbook.

My Nadine how happy I am about your marriage to Tiara's daddy... she has to be so happy about that:) I think about you often and still look at the picture that Tiara sent ... Read more

theresa mohler signed Tiara's Guestbook.

Hi Nadine.  I thought of you the other day, as I have thought of several other Dipg moms.  When I was at mass last week, my very first prayer was "ok, i am feeling some ... Read more

Marie spina signed Tiara's Guestbook.

I think of tiara always especially this time of year. I remember her asking you to put up the Christmas tree before thanksgiving one year. she always brought a smile to my ... Read more

Marie Strolin signed Tiara's Guestbook.

Dear Nadine, Thank you for your post. I think of you often and pray for your strength. I think of Tiara all the time, what a little cutie she was. She will never be ... Read more

Nadine Parsons added a new photo.

jeune carryl signed Tiara's Guestbook.

Girl, I remember. It was so close to Christmas.  It is unbelievable how time has flown.  God is the healer of all hurts and He will give you the strength to carry ... Read more

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