Every journey needs a plan

The plan for Nicolas going forward will be as follows:

Chemotherapy – consists of two treatments, 4 weeks apart. He will require a hospital stay of about 3 days with each treatment barring any unforeseen difficulties.

Second surgery – to remove the remaining tumor

Radiation – this is an intensive out-patient treatment. He will require 33 treatments, 5 days a week for 6 1/2 weeks.

 

The plan was to start chemo on January 30th, however due to the meningitis, this will be pushed back a week or two. So, Nicolas likely will not be finished his full course of treatment until about June, 2012.

 

Recovery…

Nicolas has such a strong spirit!  To be able to go through such an ordeal and be able to recover so well speaks volumes to his resilience.  Like any major surgery/medical condition, there are ups and downs.  Nicolas had been progressing well, had his EVD tube removed and had even tried eating some “mini-gos and apple sauce”.  Unfortunately on Sunday evening, Monday morning (Jan.22/23) Nicolas began to leak fluid from his head.  It was determined they needed to put the EVD tube back in (this is a tube inserted into his head to drain fluid).  It was also determined that he had an infection, which we now know is Meningitis.

Nicolas is being treated with antibiotics and had a rough and at some points scary few days, but I am happy to report that he is now on the upswing and is bounding back again.  He even started to smile and say a few “mom mom and ohhh….ahhhh” and to his parents delight…blew a few kisses!  I can assure you that these milestones, no matter how small, are truly uplifting to the spirit.  For parents who have been lucky enough to never have a sick child, I urge you to treasure this precious moments with your kids.

 

 

First step…Surgery

Upon receiving the diagnosis of a ‘Brain Tumor” on Tuesday January 10th everything has been moving at rapid speed.  The neurosurgical team preformed surgery on Wednesday January 11th in an operation which lasted approximately 8 hours.  The operation is called: a fourth ventricle tumor resection.  Doctor’s could not really tell us much, but we knew the tumor was large, we knew it was cancer, and we knew it was in the fourth ventricle pushing against the cerebellum.

Once the surgery was over, the doctor advised that the tumor was also wrapping around the brain stem.  This is a very difficult area to remove the tumor because all (12) cranial nerves leave the brain and head down the spinal column through the brain stem and as such it is a very difficult and precise surgery.

After the surgery the doctor advised us that they were able to remove about 95% of the tumor.  This was the best possible outcome considering how ‘stubborn’ this tumor was.  There is a little concern about his hearing because the doctor was ‘digging’ around the 7th and 8th cranial nerve, so a hearing test will be required.  They decided to close up and let him heal before going back in and attempting to remove the remaining tumor.  There is a small portion on the left side and a small portion on the right side (both near these hearing nerves) however for now we will give him some time to recover and gain his strength.

Symptoms/Signs

Since Nicolas’ diagnosis, I have feverishly sought out information (via the internet) to find out as much as I can about this type of tumor/cancer. This information is not to be used as a substitute for medical attention, but rather as a gathering point of information.

Your child may experience different symptoms depending on the size and location of the tumor. This kind of brain tumor can block the normal flow of cerebrospinal fluid, the colorless fluid that surrounds the brain and spinal cord. This can cause increased pressure of the brain and enlargement of the skull (hydrocephalus).

The following symptoms are possible signs of ependymoma:

• frequent, severe headaches
• seizures
• frequent nausea and vomiting
• loss of balance or trouble walking, weakness, clumsiness
• excessively sleepy/lethargic
• altered mental status, changes in concentration, memory, attention
• abnormalities in vision
• gradual changes in intellectual or emotional capacity
• problems eating, nausea/vomiting especially upon awakening
• in infants, enlarged head size or fontanelles (the soft spot that occurs before the bones in the head fuse)

Some other interesting facts we have found out from the treating doctors is that this is a rare form of cancer.  In fact only 10 -15 Canadian children each year are diagnosed with Ependymoma.  The neurosurgical and oncology team at Sick Kids are doing research in this field and have come a long was in the last 10 years, however like any other cancer – much more research and funding is required.

January 10, 2012

Nicolas’ journey with Ependymoma Brain Cancer began on January 10, 2012. It is a day, and a memory which will be etched in his parents minds forever.  I am only the “aunt” but seeing as his parents are tied up at the hospital, I decided to keep the family up to date via email.  The emails have now morphed into this blog.

Nicolas was born July 26, 2010 a mere 3 lbs, 9 oz which was due to the fact that he arrived two months early.  Despite being such a little guy, he was born without any complication and was a very healthy baby.  Nicolas was always small, but otherwise, was a very happy and easy baby.  He went to all his check ups and obtained a clean bill of health.

Around 1 year of age, Nicolas still seemed small, but his doctor dismissed this as him being a “preemie”.  Slowly there seemed to be some little signs of things being just not quite right.  He didn’t have much of an appetite and sometimes threw up a little in the morning or upon his first morning feeding.  Nicolas then got a fever for which he was diagnosed with an ear infection.  His parents noticed some “eye rolling” which they told his doctor about and again, it was dismissed as being related to the fever.  Nicolas was in a preemie therapy group and eventually started to “cruise” around the furniture so we all thought he was about to start walking.  Then, suddenly, he stopped trying to walk and became lethargic.  Most notably, he developed a “neck tilt” which became more and more obvious.

Eventually, after feeling like the Pediatrician was not addressing their concerns, his parents took him to Sick Kids Hospital  in Toronto to be checked out.  They immediately did a CT scan and within 4 hours they were given the devastating news that Nicolas had a brain tumor.

What is Ependymoma?

This information is taken from the National Cancer Institute:

Childhood ependymoma is a disease in which malignant (cancer) cells form in the tissues of the brain and spinal cord.

The brain controls vital functions such as memory and learning, the senses (hearing, sight, smell, taste, and touch), and emotion. The spinal cord is made up of bundles of nerve fibers that connect the brain with nerves in most parts of the body.

About 1 in 11 childhood brain tumors are ependymomas. Although cancer is rare in children, brain tumors are the most common type of childhood cancer other than leukemia and lymphoma.

The central nervous system controls many important body functions.

Ependymomas most commonly form in these parts of the central nervous system (CNS):

• Cerebrum: The largest part of the brain, at the top of the head. The cerebrum controls thinking, learning, problem-solving, speech, emotions, reading, writing, and voluntary movement.
• Cerebellum: The lower, back part of the brain (near the middle of the back of the head). The cerebellum controls movement, balance, and posture.
• Brain stem: The part that connects the brain to the spinal cord, in the lowest part of the brain (just above the back of the neck). The brain stem controls breathing, heart rate, and the nerves and muscles used in seeing, hearing, walking, talking, and eating.
• Spinal cord: The column of nerve tissue that runs from the brain stem down the center of the back. It is covered by three thin layers of tissue called membranes. The spinal cord and membranes are surrounded by the vertebrae (back bones). Spinal cord nerves carry messages between the brain and the rest of the body, such as a signal from the brain to cause muscles to move or from the skin to the brain for the sense of touch.