Background Story

John and I have been married for 13 wonderful years. We have been blessed with 3 busy boys,

and wouldn't change it for the world. When I say we have had 13 wonderful years, that doesn't necessarily mean we have not had our hard times, because like all people, we have had our share too. From little bumps and bruises, to losing a very loved brother, and now having our oldest son, Josh, being diagnosed with a brain tumor.

I will give you a brief history of our Josh. There were concerns right from my 35 week ultrasound. I will never forget the doctor telling us that his brain was not developing. He was born 2 weeks late, but the delivery went very well. When we first saw Josh, of course there is the natural love a parent has for their child. But there was also alot of concern..... Josh went through a lot of medical exams and tests, and was diagnosed with Encephalocraniocutaneous Lipomatosis. (google it some day- its quite interesting) The doctors informed us that he would never walk, talk or do any of the milestones that other children or people do. He had fatty tissue growing on the top of his head, and several dermoids growing on his eye and eyelid. (We often kid now, that he looked like someone from a star trek show or movie.)

Josh --a couple months old.

 When he was several weeks old he starting having seizures, which is enough to scare any  first time mom. We felt very overwhelmed with our first child, with all the dr appt, seizures and the people staring...you don't want me to start about the stares from ignorant people.. But God was with us and kept us strong.
With the help of the weekly visits from Landsdowne (local social workers for developmental delays in children) Josh started hitting his milestones, he was sitting, laughing, rolling..etc...... before we knew it he was walking and talking. The seizures were starting to be controlled with medication and he was becoming a "regular" healthy child.
Now Josh is 12. He is in grade 7 (modified), plays hockey, cant/wont shut him up. So much for the drs knowing........ He has always been our miracle baby. He has had 6 "plastics" surgeries to correct the fatty tissue and dermoids.

 We have had many good years with no medical concerns.
Early May 2010, Josh started complaining of having headaches... they were not constant, but were beginning to become consistent. I called our family dr to ask for an MRI to be booked, just to ease my mind. He had the MRI early July. When we heard no news, we thought "no news is good news". Days passed on, then weeks, months.
Early September, I received a phone call from one of Joshs' doctors, from when he was born. She is in the genetics department. They asked if we (our whole family) would take part in a study about ECCL- Enceph Lip. I asked what was involved, and she said it was just some simple blood tests. I told her I would agree to do it IF she would get a hold of the MRI that was done in July. She said that she would do that for me.
September 22 we all went down to McMaster to get the blood work done, we met with the doctor, she was so pleased to see Josh, and how well he was doing. After some routine questions about Josh, I asked her if she had a copy of the MRI, she left the room and came back quite quietly. She first started by saying that she hated being the one to tell us this, but she thought it best if Josh saw a Neurosurgeon. John and I were quite puzzled and demanded to know what they saw on the MRI. She said there seems to be a "blockage" in his brain. Not really registering what that could mean we went home and made some phone calls to alert the family. Sept 27 2010 we met with the neurosurgeon. He told us that Josh had a tumor. (my heart just stopped) you almost feel numb when you hear those words. I pray none of you will ever hear them.
The tumor is located on his brain stem and was blocking a ventricle. The brain fluid was not draining, causing pressure to build up, hence the headaches. Oct 8 2010, A day I will never forget. Josh went for a third ventricloscopy. (sp?) The surgeon drilled into Josh skull and poked an opening in the center of his brain to relieve the pressure of brain fluid. The surgery was 4 hours long, doesn't seem that bad, except when its your child laying there, and you have no idea how things are going. The time seemed to take forever.
The doctors warned us that he would be in ICU for 2 days, then probably in the ward for up to a week. (if there were no complications) I remember Dr. Baronia came got us from the waiting room and we were able to ride up the elevator with Josh, it was hard to see how he was at first, 3 nurses, bed and machines, doctors and John and I cramped into an elevator. The ICU nurses took him into his room and told us we had to wait til they had him set up. Dr. Baronia took John and I into another room and explained that the surgery went well, that he was not able to get a piece of the tumor because of the location. he did tell us that he saw the tumor. His words : "abnormal".
When we were able to go and see Josh, he was actually awake. He smiled at John and I and asked for a drink. He was sooo thirsty. He tried sitting up a bit and then all of a sudden-- he realized that something was different and weird..... he flung the sheet off and asked "what the heck is that?"....lol. He had a catheter.
He wanted it out... right then and there. John and I explained what it was and told him that it had to stay for a while. The rest of the day he would giggle every time he peed, " I'm peeing, right in front of you" or "check the bag mom, is it filling?"
Josh has always healed very well, and believe it or not... our brave guy was home from the hospital 2 days after surgery. Dr. Baronia said he has never seen a child go from ICU to home. But there was no holding him back, he had visitors, but forget staying in bed, he wanted to go downstairs, get food, drinks or go outside for a walk.

Our last MRI just before Christmas showed that the tumor has not grown at all, and the fluid is still draining well. Praise God!!! Josh is fully healed from his surgery and is eager to be able to play hockey and go sledding soon. The doctor has not signed a consent saying that Josh is "good" to play hockey yet, due to his ongoing headaches. We are now keeping a journal of all his headaches. Which seem to be getting less and less.
So now it is January 2011 and the appts are starting to fill up the calendar again. It was nice to get the Christmas season "off" and enjoy our time as a family.
We pray that the following tests will all have positive outcomes.