Neurosurgeon/Ophthalmology Appointment Jan 24 2011

Today we went to 2 appointments. First we saw our Ophthalmologist, he was happy to hear that Joshs headaches were getting fewer and fewer. We told him what John and I did, back in Dec we switched Joshs glasses back to his old prescription and it seems to be helping with the headaches, we really don't know if it has anything to do with it, but we thought we would try. Josh got new glasses back in the summer and he has never liked them, he would always look over the glasses or under, but never through them. He said they never "felt right". So we came to the conclusion that this might be contributing to his headaches. The doctor was fine with that, and wants to see Josh back in April.
After that appointment we went to our Neurosurgery Appt.
Josh was quite eager to show the doctor his headache journal, as the headaches are coming on average every 6-7 days now, rather then 3 or 4 per day.
Dr. B asked if we had seen neuro-oncology, which I replied "yes, we saw him last week......" After some discussion he asked what neuro-oncology had said regarding Josh, to which I replied, " they haven't contacted us yet...." He seemed quite confused. After a few seconds, I had realized that I was so confused, we haven't seen neuro-oncology yet, we saw the neurologist last week. I have realized now, that I really must pay attention to all these names, they seem to all sound alike and yet they all have different specialties.
Dr. B said, now that we have taken care of the "fluid issue" and headaches, now it is time to deal with the tumor. He is setting us up with Pediatric Neuro-Oncology, and another MRI has been set for April, actual date to be determined.
Josh was eager to find out whether he could play hockey again.... it was almost one of the first words out of his mouth. The doctor told Josh he would agree to let him, if he could do a few quick tests for him. Such as:
1. Gripping the drs fingers as hard as he could.
2. touch your nose and touch the drs finger--back and forth-- (as the dr moved his hand around)
3. Walk in a straight line, then back, heal to toe.
And then there was one more, and he told Josh if he passed this, he would let him play.
4. Take one big step forward and align your feet, then lift your arms, (mid body), palms up and close your eyes.

Josh did it... (John and I tried it later, when we got home, and its not as easy as it sounds-- I was actually wobbling)
So.... Dr. B wrote a letter to the hockey league saying Josh was "good to go".
The whole way back from the hospital, he kept reminding me not to lose the letter. Josh also asked today when we will see Dr. B again, to which we replied that we hope never..... Josh was confused by this, he really liked him, but we explained that it wasn't that we don't like him, its that we hope we never have "brain surgery" again. -- Josh still seemed puzzled by this, I am sure I will still get questions regarding this.



So, YES.... Josh is cleared for hockey!!!!! He is actually out right now with John and his coach getting some ice time before his game this Wednesday.

I think he is a little nervous about being back into it, but I am sure that will not last long.

As he was taping his stick tonight, he was taking "slap shots" in the kitchen and commentaries "he shoots, he SCORESSSSS and it his first game all season...." " and the crowd goes WILD!!!!!"

We truly feel blessed at this moment, to have several good appointments with positive news. We know this road, in our life, has only begun for us, whether it be treatments or simple monitoring for the future. We trust that God will be with us and keep us strong through this Life's Journey.




Deuteronomy 31:6   Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.

Matthew 11:28   "Come to me, all you who are weary and burdened, and I will give you rest"

Neurology Appt- Jan 18 2011

Today was our appt with Joshs' neurologist. We were given quite a bit of information today, I am still trying process and remember everything that was said. First we will start out, that we haven't seen this doctor in years.... and when we told his assistant about the last several months, it took him over an hour to look over everything and get his "homework" done before talking with us. Our appt was at 9am, didn't actually see the doctor til after 11am.....
We have a NAME!!!! The doctor actually told us what kind of tumor Josh has. It is a "Low Grade Astrocytomas" pay special attention to the "Low Grade" that is very important. Low grade means slow or no growth!!! How exciting is that????? He also said he is referring us to the cancer clinic. He told Josh not to be afraid of that word "cancer" they also deal with "just" tumors. We will go there to start monitoring the tumor. Most likely every 3 or 6 months MRI's. Low Grade brain tumors rarely metastasize (travel to other locations in the body) and usually have slow growth or even no growth. They however can change into high grade tumors, hence the monitoring through MRI's.
He is also referring Josh to "Child Life"-- Child Life is a profession that offers services to meet the psychosocial needs of children and youth in hospitals and health care settings. Josh will have a social worker to help him deal with the stresses, and someone to "vent" too.
We also discussed weening Josh off his seizure medication, this is a great surprise, he has been on meds since he was several weeks old. (little bit nervous about this one.... but he hasn't had a seizure in 6.5 years)
In just a month, Josh will be drug free....YEAHHH

It was a very good appointment today, and John and I are very pleased with all the info that we received. We thank God for this joyous news and pray that things will continue to go well.
GOD is GOOD!!!!

We thank all our friends and family for their prayers, and the love that surrounds us.

Poem- Must READ!!!!

THE HOLY ALPHABET
A lthough things are not perfect
B ecause of trial or pain
C ontinue in thanksgiving
D o not begin to blame
E ven when the times are hard
F ierce winds are bound to blow
G od is forever able
H old on to what you know
I magine life without His love
J oy would cease to be
K eep thanking Him for all the things
L ove imparts to thee
M ove out of "Camp Complaining"
N o weapon that is known
O n earth can yield the power
P raise can do alone
Q uit looking at the future
R edeem the time at hand
S tart every day with worship
T o "thank" is a command
U ntil we see Him coming
V ictorious in the sky
W e'll run the race with gratitude
X alting God most high
Y es, there'll be good times and yes some will be bad, but...
Z ion waits in glory...where none are ever sad!


After reading this poem, I decided it needed to be shared!!!

Frustrating Moments and Misunderstandings

As I sat here and reread my blog, I had so many emotions rushing through my head.......
So many sleepless nights and many tears shed.
One day particularly stands out to me, it was several days after Joshs' most recent surgery. The doctor had explained that they could not get a piece of the tumor due to the location-- brain stem. He had told us that he took a sample of "brain fluid" to be tested and someone would call us if there were concerns.
We waited and waited..... trust me, I am not the most patient person so I made many phone calls to the hospital to get results.
After 2 weeks of not hearing anything, it was like God just gave me a calmness that got me through the next couple of days.
Being the season that it was....hunting season. I am, what I kid, "a single mom". John was gone for the day and the all the boys were at school. I just couldn't take not knowing a second longer, so I called the hospital again....answering service...... so I hung and tried again. After 4 times of doing this, I finally got the receptionist. I had talked to her several times over the past 2.5 weeks.... she explained that she left a message for the doctor to call me, and her hands were tied. Well........... I just LOST it.
I told her, that you cant tell someone that there child has a brain tumor and expect us to just dismiss it. Then I even went on, to ask her if she had children..... I look back now and think that maybe it wasn't the wisest thing to do, but I was desperate.
She asked me to wait on hold and came back shortly to tell me that it was a glioma, and the test came back to be negative for cancer markers.
I didn't hear too much after that....I do remember her saying that the doctor would explain more to us. I first called John to tell him what I had heard. We were both so overjoyed. After speaking to John, I called my mom, you must know, besides my husband, my mom is my best friend, she is always there when I need her. Well I cried and I cried....... I kept saying "its not cancer" "its not cancer".
As I write this.... I keep feeling that emotion over and over again....."its not cancer"

We had an appointment with the doctor a week after hearing the "good" news. I was actually excited about going and hearing the words from his mouth. After looking Josh over and some routine "follow up" questions, we asked about the tumor. That is when he told us that we don't know what kind of tumor it is, we cant get a sample to test and that is the only "sure" way to know. I was very puzzled, so I asked about the fluid test. He then explained that they were testing to see if there was cancer in any other location of his body.

Well.... I must admit it was like being slapped in the face, when I was soo excited, then to be crushed again.
Now all the uncertainties again, the waiting again.... All I want are answers... I don't think that is too much to ask.

Many weeks and months have gone by now, and I find that most days I am blessed with that calmness again.
Don't get me wrong, I still have my emotional, frustrated days too.
But John and I are trying to dwell on, how WELL Josh is doing now, at this moment. We will deal with the road ahead when the time comes.

We know God is an awesome God, he has a plan and purpose for everything and everyone. We just pray that his plan is that Josh stays healthy for many more years.

Upcoming Appointments

Just a brief post to let you know when our upcoming appointments are:

January 18- Neurologist
January 24- Ophthalmology
January 24- Neurosurgeon

So far this is what has been booked.
We pray that these appts will go well, Josh is really hoping to be "cleared" for hockey as the playoffs start the end of this month, and he has only played 1 game all season. I keep trying to explain that there are more important things right now, but to a 12 yr old..... he doesn't think so. :)

Medical Technology-- Amazing!!!!

When I started my blog I felt, out of my comfort zone. But now that I have shared some of our life, I want to keep sharing. A very good friend of mine said: "Just think, you can share all these memories with Josh, when he is older and married." I pray that we will be able to share this together.
 As I have explained in my previous post, Josh was born with a very rare deformity. In 1998, the year he was born, we were told that there were only 14 known cases in the world with Encephalocraniocutaneous Lipomatosis- which I will often refer to as ECCL. (It took me a year to learn how to pronounce it- still have to look up the spelling every time).
Josh has endured much in his short life, he has had many hospital trips, surgeries, been poked and prodded. But if you know Josh at all, he has taken it all in stride. That is just the way he is. Just confirms what we believe: God knows ALL and plans ALL-- what I'm trying to say is, Josh can deal with all these stresses. John and I often think if it were one of our other children, I don't think they would cope the same way.
At the age of 4, Josh had already had several "corrective" plastic surgeries. He was getting to the age that he noticed that he looked different then the other children.
We had a GREAT plastic surgeon, he was always very good to and with Josh. At one of our many appointments he asked Josh how he was..... Josh paused..... then he quietly and shyly asked the doctor if he could get "new hair". Because of all the surgeries and the removal of the fatty tissue, Joshs' hair was not growing in the middle of his head. He had a small patch of hair at the front and nothing in the middle.
The surgeon explained that we could try "tissue expanders"..... of course, we had never heard of such a thing.
He explained that  they would cut open 3 separate spots in Joshs' head and insert 3 balloon-like expanders between his skin and the skull. They would be very small to start with, but we would go to the hospital on a weekly basis and get injections. So after talking it over and hearing if there were any risks. We decided to go ahead and get Josh "new hair".
The plan was to start as soon as possible, meaning we had surgery within the next month. We were hoping the whole process would be done by Joshs' 5th birthday. We diligently went to the hospital every week to get the injections, and the expanders grew and they grew.
Josh being the outgoing, carefree spirit that he is, didn't mind walking around with these balloons in his head. He often choose not to wear the hat when we went shopping, church, or to school.

I look back now, and think he is honestly, such a trooper, I am so proud of him and the way that he has dealt with his trials.When you are in that moment, you just do it, and don't really think about how well or not well it is going. But now I cant believe how strong he was, for being so little, he never complained about the hospital trips or the countless needles. Again, God was with us and kept us strong.
Over several months the expanders got to the size that the surgeon was quite satisfied that the next surgery would be a success. Josh was having surgery AGAIN, and only 1 week before his 5th birthday.
We were so excited!!! Josh was gonna have his "new hair" before his birthday, that is all he talked about for months.
The tissue expanders were removed, and it was a success. I remember walking into the recovery room and seeing Josh laying on the bed, all I could think was, his head is round again. I couldn't get over how round it was. It sounds kinda silly, but after looking at this "out of proportion"  head for months it was nice to see the roundness of his little head. The surgeon did a marvelous job. The hair line was moved up so the bald spot was no more.

I forgot to mention, that while they had Josh "under" they decided to remove the dermoid on his eyelid as well. You can see the incision on his eye on this picture.


This is just one of the many stories that I have regarding Joshs' life. I am sure, now that I have joined the blogging "world", I will remember more and more.

God has kept us strong through the years, and we depend on HIM to continue to do so.

Josh before ANY surgery

                                                                            Josh after fatty tissue removed.

Josh with his brothers, Jordan and Joey Now.

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.