Danny - son with Pontine glioma - need some advice

[Elonna]

Margaret,

It was good talking with you earlier today about Danny. I just wanted to put an answer about your concerns so that it will be here for others to read as well.

While I cannot tell you for certain whether Danny's cancer is progressing, I can tell you that his current symptoms could be associated with lysing when there is brain involvement or a point-specific brain tumor (one that begins in the brain as Danny's does).

I think there is a good possibility that he is experiencing what has been coined through the years as a "Protocel Funk". "Funk" periods through the years have always been associated with any kind of brain tumor. These Funks can including: Foggy thinking, dropping everything you pick up, short term memory loss, periods of aphasia (Loss of ability to understand or express speech), imbalance, arm and/or leg weakness, entire side weakness, etc. Actually deficits in anything that involves our nerves. The types of Funk periods one experiences is associated with where their tumor is located in the brain and what operation that area of the brain is responsible for. The Funks also can included headache activity and even a return of seizure activity, again depending on the part of the brain where the tumor is situated.

These Funks happen because particular nerves are healing. During the healing process, they become very fatigued and it is hard for their normal functions to be carried out completely. Thus, causing the deficits to show up. These Funks can last for several hours or for days. The longest I have had someone report back to me is several weeks (slightly over 2). The Funks can and will come and go as part of the healing process. Each time he comes through a Funk, he should actually be stronger in whatever the deficit was during the Funk. I will tell you that he can experience something similar to this particular issue again throughout his healing until the nerves are completely healed. Additionally, if he would do so, it should be less intense. Just to forewarn you, he will most likely experience some of the other various Funks as well.

The brain is like a huge electrical nerve "machine". When someone has a tumor, part of the electrical connection in that area of the brain is disrupted. As a tumor begins to recede and nerves begin to heal, "sparking" happens in the brain as the electrical connections are beginning to re-connect. It is similar to having 2 live electrical cords with bear ends. If you touch these ends together, you will see electrical sparking. As the nerve inflammation eases and these electrical connections heal back together, there is less and less "Funk" activity. However, during the healing process, because of the reconnection and healing of the nerves, the periods of Funks will come and go.

It is absolutely recommended for an individual to continue taking seizure medication when dealing with a brain tumor if their tumor is in an area of the brain where seizures are likely. Additionally, some individuals need steroids to help with inflammation and edema in their brains. These, unfortunately, are necessary "evils" until there is definite healing in the brain. Alternative wise, one can use Curcumin or Tumeric (as it is sometimes called). This supplement acts as a natural anti-inflammatory and is especially helpful with a brain tumor. As I know we discussed, since he is too young to swallow pills, I would recommend that you up the Bromelain that he is taking as Bromelain also has some anti-inflammatory properties. Hopefully, he will enjoy eating more of the chewable Bromelain.

Additionally, as with cancer anywhere in the body, the body needs water. The more water one takes in the quicker the lysed matter leaves the body. I would also suggest that when one is experiencing Funks, they need to saturate themselves with water. So, try to get him to drinking even more water than he is already drinking for you.


Again, I cannot guarantee that this body weakness is not progression of Danny's disease. While it is normal to immediately go in the direction of "Oh No, the cancer is getting worse", I want you to know that there is a possibility that this is rather a sign of healing. We may not know at this moment whether his current issue is getting worse, however I can tell you that you would see signs of this if so. These signs would be manifesting themselves as deficits in other areas throughout his body. In other words, he would be declining overall. What you have expressed in your post, does not sound like he is actually declining. Unfortunately, time is what will give us a definitive answer -- that's the hard part, waiting on time to pass to truly see if this is a cycling Funk or progression of his disease.

Keep in touch and let us know how Danny progresses!