Hydrocephalus

Overview:
Our daughter Brieanan was diagnosed with hydrocephalus at just 10 months old, less than 3 days later she suffered a massive global stroke (which actually did more damage than the cancer itself), three days later she underwent an almost 10 hour surgery to remove her tumor and once it was biopsied she was subsequently diagnosed with anaplastic ependymoma a grade 3 brain cancer. She has undergone many surgeries, scans and therapies, spent over 75 days in the hospital over an 8 month period and is just an amazing little girl. She's our miracle tumor trooper!

Symptoms:
secondary hydrocephalus, vomiting, focal seizures, loss of milestones, infantile spasms, drastic weight fluctuations, nystagmus

Testing and Diagnosis:
Ultrasound, MRIs, bloodwork, CT scans
Diagnosed with hydrocephalus Aug 24th 2012
Diagnosed with large brain tumor Aug 29th 2012
Suffered massive global stroke Sept 1st 2012
Diagnosed with anaplastic ependymoma Sept 5th 2012
Diagnosed with epilepsy Sept 2012
Diagnosed with paralyzed vocal cords 2012
Diagnosed with Cortical blindness Oct 2012
Diagnosed with subdural hematomas March 2013
Diagnosed with Cortical vision impairment Spring 2013

Treatments:
External emergency shunt for immediate relief of hydrocephalus and the resulting stroke

Complete tumor resection, no chemo/radiation because of age (10 months) and the amount of brain tissue already damaged from stroke we couldnt risk more irreversible damage for a treatment that might not be necessary or might not work

VP shunt placed for long-term treatment of hydrocephalus

Trach placed due to paralyzed vocal cords

G-tube placed secondary to trach

Port-O-Cath placed for future lab work and possible chemo

Subdural shunt placed for long term treatment of the two large subdural hematomas

Complications and infection due to shunt tubing perforating bowel and both shunts externalized during 2 week intensive antibiotic course

Hydrocephalus was found to be self-regulating so VP shunt was removed

Subdural hematomas were cleaned out and subdural shunt also removed
(very rare to have these shunts removed as most shunts are left in even when not needed any longer because of the risk of infection to the brain and CSF during surgeries and recovery)

Currently has MRIs every 3 months to check CSF and to check for recurring tumors

Also undergoes vision, physical, speech and occupational therapy and is on anti-seizure medication

Resources:
www.butterflyfund.org
www.chasa.org
www.acco.org

Personal Story:
On August 29th, our daughters 10 month birthday, we found out that she had a fairly large brain tumor which was causing hydrocephalus the pressure from which caused a global brain stroke just three days before the tumor was able to be removed.

Luckily the tumor came out completely and after many scans and MRIs she is cancer free, but we still are dealing with the aftermath of the stroke which did more damage than we could ever have imagined. She has a trach to breathe, a g-tube to eat, a shunt to drain excess fluid from her brain to her belly, and she has a port-o-cath for any treatments she might have to go through. Luckily we did not have to go through chemo or radiation, but it is still a hard lot to deal with. She went from being a perfectly normal developing 10 month old to a newborn hooked up to countless machines and undergoing many treatments. But she is strong, and determined and stubborn, THANK GOD. She is progressing, slowly but surely, however it will be a long road to finding out whether or not our little miracle tumor trooper will ever be back with us 100% recovered. Our perfect little girl was taken away from us and we don't know if we will ever get her back like we remember her.

However, we are so thankful that we still have her, being in the PICU at the childrens hospital we saw many little ones lose their battles, and saw many families mourning children that had not even made it to highschool, but that doesn't take the pain away from our thoughts, and doesn't make our memories any less traumatic. No mother should ever have to see her baby, not even a year old, on a table with wires and tubes before she had even been able to say Mama. No parents should have to sit in a meeting room and see an MRI covered in white, showing the drastic brain damage their 10 month old has suffered, and be told that we would be lucky if she even woke up again. Its moments like that, they make you look back and realize how good you had it just a week before and look forward and realize you have no idea what the future holds for your child.

After spending almost 2 months straight in the hospital from Aug 29th to October 18th, we came home and tried to get settled in to our new life, trying to make a new normal. It was definitely hard. My normal now is scheduling countless doctors appointments, making sure B gets her medical supplies on time, making sure her medicines are refilled and keeping up with insurance calls and supply companies and therapy visits (on top of keeping up with housework and infant twins!) We have four amazing nurses that take care of B 24/7 so that we can in fact get back to a "normal" life. I was a stay at home mom and took her everywhere I went, so it was and still is super hard adjusting to the fact that I cant just pack up and take my little girl everywhere I go anymore, without a ambu-bag, supply bag, emergency trach bag and suction machine, and also a nurse.

So now we have a new normal, a medically special needs 2 year old, 6 month old twin boys and home nurses that are like family. I dont know what its like to be alone in my home anymore. I dont know when I might end up in the hospital and away from the twins for weeks at a time. Our life is an anything goes roller coaster at this point. We definitely never expected this but we are so happy to have our miracle tumor trooper still with us, being stubborn, doing things they said she might never do again, and being a princess and a diva at the same time.

Our family motto: Take NOTHING for granted!
Submitted by MOM Erica Jerome