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Hi, I'm Tracie and my journey began 4 years ago on November 28th 2012. It's amazing how life can change in the blink of an eye. I was 13 years old, I had nonstop vomiting and headache for 3 days. We called my pediatrician to ask for advice, he then told us to go to the ER to get hydrated. Once we got to the ER they preformed a CT, which then showed my ventricles were 4 times the size they should be. They then called a Nerosurgeon and Oncologist. It appeared that there was a mass between my 3rd and 4th ventricle that wouldn't allow the CSF (Ceribral Spinal Fluid) to drain correctly. Then it began!
Surgery #1- November 29th 2012. Placement of an EVD (External Ventricular Drain) and growth biopsy
Surgery #2- December 5th 2012. Placement of a VP Shunt an removal of EVD. Growth was diagnosed as a Low Grade Glioma in the foreman of Monroe
Surgery #3- January 11th 2013. Proximal Shunt Revision
Surgery #4- January 15th 2013. Laporoscopy to move the shunt tubing away from my liver
Surgery #5- April 5th 2013. Conversion of shunt from a VP to a VA
Surgery #6- May 9th 2013. Converting the shunt from a nonprogramable to a programable
Surgery #7- September 30th 2014. Proximal Shunt Revision
Surgery #8- August 11th 2015. Proximal Shunt Revision
Surgery #9- October 14th 2015. Proximal Shunt Revision
Surgery #10- November 17th 2015. Placement of the Port
Surgery #10- April 14th 2016. Switching of Port and Placement of new shunt
Throughout the last 3 years, the tumor has grown 35%, which requires Treatment of Chemotherapy. Then Chemo began weekly!
Chemo #1- December 15th 2015
Chemo #2- December 22nd 2015 (My Birthday!!!)
Chemo #3- December 29th 2015
Chemo #4- January 5th 2016
Chemo #5- January 12th 2016
Chemo #6- January 19th 2016 (Inpatient)
Chemo #7- January 26th 2016 (Inpatient)
Chemo #8- Febuary 3rd 2016 (Inpatient)
Chemo #9- March 10th 2016 (Beginning maintence Cycle 1)
Chemo #10- March 17th 2016 (Saint Patties Day!)
Chemo #11- March 22nd (Tricky Tricky Port Tuesday)
Chemo #12- March 29th 2016
Now, for the current stuff. As I am writing this, I am currently sitting in the hospital going on 4 weeks now. Why you may ask? Well, I came in with some headaches believing it was the shunt. Unfortunately my Nerosurgeon was out of town, so it was the sit and wait process. Once she made it back, we ended up dialing the shunt from a 7 to a 5. It then takes 24-48 hours to figure out if that worked. After the 48 hour mark, I realized that the shunt still was not working, so we consulted my Nerosurgeon again. We then came to conclusion that the shunt was draining to much, and it needed to be dialed up. So the next day I went from a 5 to a 6. We then had to wait another 24-48 hours to see if that worked. After 48 hours my shunt headaches went away, unfortunately instead of shunt headaches, they were now migraine headaches. 4 days later we finally decided to try DHE (an IV migrane med) and luckily that worked! I went home 1/30/16.
Not even 24 hours later and I was back (1/31/16) with abdominal pain. We did a X-Ray, and that showed that I was backed up with stool and gas. I was then admitted for pain control. As I was there we consulted a GI doctor. We then decided to do a whole clean out, sure enough that did the trick, there was barely anything left. I was then discharged on 2/4/16.
Can I get a break? Never! I was then back in the ER a little over 24 hours later (2/6/16). Why you may ask? Abdominal pain, AGAIN! They then decided to do a CT scan to look a little deeper into it, try different meds, and run different tests. I was then admitted again for pain control. Currently we are still working through managing the pain but GI is involved and things are moving forward. More info as it comes! :)
During all of this craziness, mom has been by my side out of work. She has good insurance, however there are lots of co-pays, meds, and just the cost of eating at the hospital all the time. It's not easy to ask for help, but any help anyone can provide doing this journey is great, Including prayers and well wishes.
As it seems, this journey isn't easy. Luckily for me, I have wonderful friends, family, and all else welcomed. I will keep this updated when I can. As for now, I would like to say a big thank you to everyone following by my side, and helping along the way. God really is good!!
Surgery #1- November 29th 2012. Placement of an EVD (External Ventricular Drain) and growth biopsy
Surgery #2- December 5th 2012. Placement of a VP Shunt an removal of EVD. Growth was diagnosed as a Low Grade Glioma in the foreman of Monroe
Surgery #3- January 11th 2013. Proximal Shunt Revision
Surgery #4- January 15th 2013. Laporoscopy to move the shunt tubing away from my liver
Surgery #5- April 5th 2013. Conversion of shunt from a VP to a VA
Surgery #6- May 9th 2013. Converting the shunt from a nonprogramable to a programable
Surgery #7- September 30th 2014. Proximal Shunt Revision
Surgery #8- August 11th 2015. Proximal Shunt Revision
Surgery #9- October 14th 2015. Proximal Shunt Revision
Surgery #10- November 17th 2015. Placement of the Port
Surgery #10- April 14th 2016. Switching of Port and Placement of new shunt
Throughout the last 3 years, the tumor has grown 35%, which requires Treatment of Chemotherapy. Then Chemo began weekly!
Chemo #1- December 15th 2015
Chemo #2- December 22nd 2015 (My Birthday!!!)
Chemo #3- December 29th 2015
Chemo #4- January 5th 2016
Chemo #5- January 12th 2016
Chemo #6- January 19th 2016 (Inpatient)
Chemo #7- January 26th 2016 (Inpatient)
Chemo #8- Febuary 3rd 2016 (Inpatient)
Chemo #9- March 10th 2016 (Beginning maintence Cycle 1)
Chemo #10- March 17th 2016 (Saint Patties Day!)
Chemo #11- March 22nd (Tricky Tricky Port Tuesday)
Chemo #12- March 29th 2016
Now, for the current stuff. As I am writing this, I am currently sitting in the hospital going on 4 weeks now. Why you may ask? Well, I came in with some headaches believing it was the shunt. Unfortunately my Nerosurgeon was out of town, so it was the sit and wait process. Once she made it back, we ended up dialing the shunt from a 7 to a 5. It then takes 24-48 hours to figure out if that worked. After the 48 hour mark, I realized that the shunt still was not working, so we consulted my Nerosurgeon again. We then came to conclusion that the shunt was draining to much, and it needed to be dialed up. So the next day I went from a 5 to a 6. We then had to wait another 24-48 hours to see if that worked. After 48 hours my shunt headaches went away, unfortunately instead of shunt headaches, they were now migraine headaches. 4 days later we finally decided to try DHE (an IV migrane med) and luckily that worked! I went home 1/30/16.
Not even 24 hours later and I was back (1/31/16) with abdominal pain. We did a X-Ray, and that showed that I was backed up with stool and gas. I was then admitted for pain control. As I was there we consulted a GI doctor. We then decided to do a whole clean out, sure enough that did the trick, there was barely anything left. I was then discharged on 2/4/16.
Can I get a break? Never! I was then back in the ER a little over 24 hours later (2/6/16). Why you may ask? Abdominal pain, AGAIN! They then decided to do a CT scan to look a little deeper into it, try different meds, and run different tests. I was then admitted again for pain control. Currently we are still working through managing the pain but GI is involved and things are moving forward. More info as it comes! :)
During all of this craziness, mom has been by my side out of work. She has good insurance, however there are lots of co-pays, meds, and just the cost of eating at the hospital all the time. It's not easy to ask for help, but any help anyone can provide doing this journey is great, Including prayers and well wishes.
As it seems, this journey isn't easy. Luckily for me, I have wonderful friends, family, and all else welcomed. I will keep this updated when I can. As for now, I would like to say a big thank you to everyone following by my side, and helping along the way. God really is good!!