/7MONTHSPOSTOPERATION

MRI image last March 2013, showing craniopharynioma tumor in Carlisle’s brain with the size as big as a pingpong ball.

We’re on our seventh month of surviving Craniopharyngioma. I keep on praying and thanking God that my Carlisle still is doing good, unlike to those I have read before when we were in the hospital about the post operation effects of this tumor. Some experience numerous seizures and blood clots months after the operation.

According to UCLA Benign Skullbase and Pituitary Tumor Program, craniopharyngioma are benign tumors that occur at the base of the brain, above the pituitary gland. For Carlisle’s case, it is at the middle of his brain, crushing his optic nerves. It occurs both in children and adults, but studies show it does mostly in children 15 years old and below. Craniopharyngioma can grow to large sizes without showing any symptoms. Remembering what happened to my boy, we just noticed it not until he was nearly a year old, which appeared to be as sized as a pingpong ball.

The only treatment that studies suggest to remove craniopharyngioma is brain surgery or craniotomy. No medicines, early treatments, or whatsoever. When his surgeons told me that Carlisle needs to undergo brain surgery as soon as possible, my world was devastated. A 10-month-old baby, should undergo brain surgery? My baby, who was deeply taken cared of that I don’t allow anyone or anything to scare nor hurt him? I was drown in tears.

Craniotomy approach for craniopharyngioma.

Carlisle underwent brain surgery last June 13, 2013, in a craniotomy approach. A craniotomy requires a scalp incision, and a temporary removal of a piece of a skull. A surgical microscope is used to provide high magnification so that the neurosurgeons can safely gain access to the tumor. A catheter (thin tube) is inserted into the cyst and a small container is placed under the skin. The fluid drains into the container and is later removed. Sometimes, after the cyst is drained, a drug that causes the inside wall of the cyst to scar is put through the catheter into the cyst. This is done to stop the cyst from making fluid or to increase the amount of the time it takes for the fluid to build up again. Surgery to remove the tumor may be done after the cyst is drained.

Here’s an image of Carlisle (with my sister) showing his stitch at the right side of his head due to craniotomy.

We stayed at the hospital for almost 6 weeks, to make sure he was fully well before we got discharged. The tumor went on testing and thank God that it resulted to negative cancer cells.

Negative for cancer cells! Yahoo! :)

After the result of the laboratory test on his tumor, his doctors explained that instead of undergoing chemotherapy, he will instead do radiation therapy to kill the remaining 20% of tumor on his head. According to UCLA, stereotactic radiotherapy is a technique in which a high dose of radiation can be delivered to the tumor target. Remarkably, the surrounding brain structures receive only a fraction of the radiation dose and are typically unharmed (with the exception of the normal pituitary gland). Radiation therapy is typically used for tumors that cannot be cured surgically. In Carlisle’s case, 20% was not removed because a part of the tumor is already connected to some of his endocrine glands which makes him awake and growing.

According to Rolf-Dieter Kortmann of Department of Radiation Therapy and Radio-oncology, University of Leipzig, Leipzig, Germany, radiation therapy is a cornerstone in the therapeutic management of craniopharyngioma. The close proximity to neighboring eloquent structures pose a particular challenge to radiation therapy. Modern treatment technologies including fractionated 3-D conformal radiotherapy, intensity modulated radiation therapy, and recently proton therapy are able to precisely cover the target while preserving surrounding tissue, Tumor controls between 80 and in access of 90% can be achieved. Alternative treatments consisting of radiosurgery, intracavitary application of isotopes, and brachytherapy also offer an acceptable tumor control and might be given in selected cases. More research is needed to establish the role of each treatment modality.

According to National Cancer Institute, some treatments for tumors cause side effects months or years after treatment has ended. Side effects from tumor treatment that begin during or after treatment and continue for months or years are called late effects. Late effects of tumor treatment may include the following:

• Physical problems such as vision problems and obesity.
• Changes in mood, feelings, thinking, learning, or memory.
• Second cancers (new types of cancer).

For example, serious late effects of radiation therapy for craniopharyngioma may include the following:

• Pituitary gland stops making hormones.
• Stroke or blood vessel problems.
• Blindness.
• Second cancer in the area that received radiation.

According to them, some late effects may be treated or controlled. As per Carlisle’s case, he already experience blindness and it is undetermined whether he will see again or not anymore. I cannot also bear him having a second cancer. We’ve given enough, he suffered enough. I don’t want to see my child getting sick anymore. :(

Carlisle while strolling at Bonifacio High Street. :)

‘Til my next post. Will keep you updated for Carlisle’s development. :)