Danny - son with Pontine glioma - need some advice

[Elonna]

John,

Some supplements can be taken with food. If is enzymes you are taking about, though, these need to be done on an empty stomach and with no food involved as they will digest the food rather than get into the body; thus, compromising the effect needed for them to have actually out in the body. Bromelain can be purchased in a chewable form from Puritan's Pride. They look a lot like the "Smartie" candies and have a tart/sweet taste going on. I would suggest you get those for him if you haven't already.

You really need to let us know exactly what supplements you are talking about for us to give good suggestions other than the above. Sorry,

[johncal2004]

Hi Elonna,
Sorry, yes, we have Danny on chewable Bromelaine, (he's taking these, if a little reluctantly), and on a multi enzyme (with Bromelaine and Pancreatin). any thoughts on how to get this one into him (they're supposed to be swallowed with water, but he's unable to swallow them directly, so) he ends up tasting them, which puts him off them.

Is it ok that he just stays on the chewable Bromelaine, i don't want the daily battle to deter him from taking even these.

fyi, Danny is only on these plus the protocel, nothing else.
cheers,
John

[ann td]

Blessings to you, John, and your precious son, Danny! I'm hoping Elonna has a good suggestion for how to 'disguise' the enzymes where he can ingest them.

[johncal2004]

Thanks Ann,
All positive thoughts and prayers are gratefully received.
Cheers,
John

[johncal2004]

You only want to keep him on #23 for a period of 4 - 6 weeks. You will then need to switch him over to #50 as this is what is needed with aggressive tumors. You would start him out on 1/8 tsp initially with both formulas however you need to work him up to the 1/4 tsp as soon as possible. You do this with #50 by doing 3-4 weeks at 1/8th, then 3-4 weeks at between 1/8 and 1/4 tsp, and then you move him up to the 1/4 from there. With the #23, you do 3 weeks at 1/8 and then move him right up to 1/4 tsp.

Elonna, We moved Danny to #50 last Saturday. He is taking 1/8 tspn 4 times a day, is this correct (for now), and should it be 4 or 5 times a day.
Thanks,
John

[Elonna]

John,

Yes. Start him out at 1/8 tsp for 3 to 4 weeks depending on how you feel he is doing with the change in formula. After this period, give him in between the 1/8 and 1/4 tsp for 3 to 4 weeks again depending upon how he is doing. Then move him up to the full 1/4 tsp and stay there. Expect him to have a tired spell again and most likely be more tired than he ever was on #23.

Additionally, #50 is taken 4 times a day on a regular basis. Power dosing is done 7 times a day at every 3 hours from the first dose in the morning to the last dose at night. Then one should sleep for 6 hours without taking a dose of Protocel during that time. However, I would not try a power dosing session with him until you have him on the 1/4 tsp and you feel he is stable. Because his tumor is in the brain stem we especially don't want to overload this area with waste. Also he would need to increase his water during this time up to 1/2 gallon of water per day during the power dosing days and for 2-3 days afterward.

[johncal2004]

Hi Elonna,

Its Margaret here Danny's Mum. Thank you for detailed replies to date. I've found them very useful.

Danny started on Protocel 23 seven weeks ago (he has moved to Protocel 50 two weeks ago), as soon as Danny started on Protocel 23, almost immediately the lysing started and I started to notice small improvements in Danny's symptoms e.g. the tilt of his head has improved, his hearing has improved and his headaches have decreased. But in the last few days, I have noticed a weakness in Danny's left arm and hand and his balance is very bad. Is this a side effect of the Protocel 50 or could it be the brain tumor? I am confused as his other symptoms had improved so much.

Many thanks,
Margaret

[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!

[Rebeccawomack]

Margaret,

I wanted to write encouragement for Danny. I am so glad to hear that there is improvement, and yet I can certainly understand your concern with the mixed symptoms. I am glad that Elonna provided such a detailed description of what could be going on with him. This certainly makes sense in the framework of his type of cancer. Although it is no guarantee, it is good to keep those racing thoughts in check with rational possibilities.

I recently had some nerve issues with my legs due to misaligned hips. I had a period of intense numbness and burning that lasted for several weeks. After taking great pains to rest them, ice, stretch, take Wobenzyme, and other supplements, they seem to finally be healed. I know this doesn't begin to compare to your precious son having cancer, but I wrote to encourage you in your waiting. I had just a simple issue and it took great pains to bring that healing about. The body is such a tricky thing and healing takes time. The process of lysing itself is quite a lot for the body to handle, and with his tender brain still developing, I am sure there is a sense of "wooooooooah" going on in his brain. It's simply attempting to acclimate to the healing process.

I agree that there cannot be any promises regarding these hypotheses. I do consider it a wonderful sign that there is not an overall decline as well.

As you wait to see what the next days and weeks unfold, just take one moment at a time. I know that in the pursuit of healing, the preciousness of each tender moment can pass you by. Each day is such a gift, no matter what it holds.

I hope and pray for all of your comfort and peace, and above all, healing in Jesus' name.

In Him,
Rebecca

[Elonna]

Everyone,

Please add Danny to any of your prayer lists you can think of as well as your own personal prayers. I have received an email from a family friend that Danny is in the hospital. The email I received was dated May 6th and the friend thought that he had been in the hospital that day and as far as she knew was still there.

Danny is experiencing some edema issues in his brain. As the brain stem controls all body function, he is in quite a serious condition for him as there is very limited room for anything other than the brain stem in this part of the brain. The doctor's considered a shunt originally, but dismissed this idea basically indicating that he only had several weeks of life left. Basically, in my opinion, I don't think they felt he was worth the bother and that the procedure although it would definitely be helpful would be a waste of time/effort (again this is just my opinion). At any rate, they were going to give him steroids to see if they brought down the swelling.

I have encouraged his folks through this friend to fight for the shunt as I believe this would be a better long term solution to the edema over the steroids. However, hopefully, the steroids will reduce this edema. I also told them to increase his water intake to also hopefully help.

If Margaret and John cannot do so, I will keep you guys updated as I learn more details. Please uphold this family in prayer in the meantime.