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From the bottom of my heart I will pray for your family and your daughters recovery.

My kids are the air that I breathe and I cant imagine how you and your wife feel right now but have faith and if you feel you need a second opinion GET ONE. I am sure she is in good hands but dont be afraid to question anything.

Good luck and God bless!

Thanks again guys. The last three days at home burried in the computer and lots of family, church and friends along with that orange tabby cat have been great medicine for morale.

My daughter laughs and smiles as she squeezes that cat.

UV Since you said they are good luck a few more have said the same, thanks for that.

Walter you are the best guy I have never met.

Tailhook Tom :)

All the rest of you, God bless you for your words and offers.

Mark,

Your family is stunningly beautiful. You are a lucky man.

I hope she is feeling better, and that cat, awesome!

Dug

Mark:

Tell your little girl to look very hard in these pictures and see if she can see a whale blowing air from its breathing hole.....if she finds it....tell her you will bring her down to Puerto Rico next Christmas and we will go out to look for humpback whales.....saw 4 yesterday......

My cousin was given horrible odds at the age of 9, then even if he was to live... his life would be filled with huge hurdlers, being sterile was a certain.

Fast forward Twenty plus years... Two months ago I was given the honor of being the Godfather to his Beautiful, Naturally Conceived Twins.

I call it a miracle... they do happen.

Mark,

We'll be praying had for your daughter, your family and for the doc's!!

Sincerely,
JohnD

Mark, my prayers are with you and your family.

Mark, you, Mara, and family are in my prayers.

I read this story , terrible , i have 3 little boys at home , i feel with you.
Keep faith !! and trust the Dokters ! we all will pray.

Gert

My angel puts on a big face before she gets fitted for the radiation mask. Hueso she found the whale spouts. we'll be overto see you. Gracias Hermano!

What a doll!

just doubled up my prayers for you buddy, my heart goes out to you and your family

Mark
Will be thinking and praying for yall!!
no doubt she is way better lookin that you!!
Hang in there !

Mark- she is fantastic. We are all, everyone of us, pulling for her, brother. Milwaukee Childrens is a great hospital.

what a beautiful brave little girl....

Mark:

That is an agreement you cannot brake. David Emilio and I will be waiting for her down here.

Mark,

I just read this... prayers sent!

I see many of the new meds very early.

If there is anything I can do please let me know.

JD

Although I continue to say we are going to be victorious I must explore all options post initial treatment or I would be doing a diservice to myself and to her. I may be looking at experimental drugs and clinical trials in the future. Thank all of you guys again for everything you say, think and do.

Good looking buddy you got there Hueso. Squeeze him once for me.
Mark

Thank you Mark for keeping us updated. We're all here for you. Walter

Mark, What a sweetheart....wake up and deal with each day and moment one at a time...we had info overload after my sons diagnosis....had to stop lookin on the net after a while...the doctors today deal with our kids like capt pat and bruce work on bertrams...it never ceases to amaze me what they can do...the doctors at childrens are the best...pullin for you and your family on a daily basis...BH

My wife's niece and my neice have similar issues.

What we found out from their parents that helped tremendously was dealing with a team of doctors who met and discussed the issue rather than dealing with individual doctors who seldom speak and your left going back and forth.

Many times things are missed.

Continued prayers.

We are heading to Northwestern University today and Childrens Memorial Hospital to see Dr, Stewart Goldman who's name has come up a number of times during my research and his team has agreed to see my baby.

Our current course of radiation and temozolomide (SP?) (oral Chemo) starts today with an anti nausea, then the oral chemo and finally tomorrow the first radiation treatment.

Last week was consumed with MRI, CT scan and radiation machine set up.
The amount of pills and liquids I have to make my baby take is remarkable. Fortunately she has had an intense hunger due to the steriods they have her on for inflamtion around the tumor. In the next few weeks I am told she will loose most of her hunger due to the other treatments.

Thanks for the continued prayers.
Mark

Mark...

Having posted a message here earlier I am not sure what different I can say today, except please be assured that there are lots of us out here who are constantly keeping your family in our hearts and minds and prayers. We pray for you and your wife to have the strength to face adversity head on and we pray for successful treatment for your daughter. Please know that you are not alone, and there is strength in numbers. I can't find the words that adequately express my feelings, other than to assure you that you and your family are not alone.. we all are trying to send strength and determination your way.

Mark- the radiation will cause no discomfort for your daughter and is the most targeted of the treatments. Wish I could say the same about the chemo, but you will know within three days how she will react to what they are giving her. The anti-nausea pills the first time is usually the weakest/mildest kind as they hope she will not need the stronger dosages. Do not hesitate to demand them as it will be difficult for her to accept further chemo if it is coupled with severe discomfort. Tough for an adult, so what would you expect from a child? I am sure you have a long list of questions to go over with the Doctor you will be seeing. Don't be afraid to ask anything. We're all rooting for her...and you! Walter

Mark:

During our process with my father we found it very useful to write down in a piece of paper each and all of the questions we had regarding diagnosis (how is she today), treatment (what and for what; side effects) and prognosis (what to expect in the future).

Doctors were very helpful and practically gave us seminars regarding the condition and treatment provided.

Don't leave the doctor's office with doubts.

Your daughter is in my prayer.. "By His stripes we are healed"
Wayne

Mark, email sent.

God bless you and your family.We have your little girl in our prayers.

Mark

We know you will leave no stone unturned. It can get confusing at times. Just listen carefully, keep good notes and just know that you have a large group praying for your daughter.

We learned of a Dr. that was fairly close that could help us with nutrician for the immune system and had made an appointment to see him only to find out today that he isn't held in very high regard by his previous patients.

In the quest to find the course to defeat this tumor I have decided that if we cleanse the immune system and then feed it to supercharge it with natural suppliments and other good nutrician we can invite the body to fight and kill this thing as well as what the Dr's are doing with radiation and oral chemo.

No traditional medicine Dr. will tell you that certain juices, foods or natural suppliments will help for at least a couple of reasons. One being they just don't study for the most part what natural, herbal and homeopathic options we can use in conjuntion with traditional western medicine. Also they tend to fear giving information due to legal reasons and potetial litigation. Of course these are both my opinion.

Our search continues to find the Doctor willing to tell me how to supercharge Mara's immune system while we dump poison and other immune impunning drugs into her system.

On a brighter note the kitty continues to please her to no end as does the love from wonderful friends like all of you. Here is a pic of her and the kitty and the old dog that still warms her heart from time to time.


Thanks all,

Mark

Thanks for the update Mark. Praying for Mara.

Daniel

http://www.garynull.com

Gary Null may be a place to start researching dietary regimens and supplements.

Mark,

Thank you for the update.......our prayers are still focused on Mara.

On the lighter side, looks like the old dog needs some sleep! :wink:

Mark

My sister in her search for a nutrienist due to my Nephew's brain tumor found this woman in NJ.

Janice Marie Picking
Norhtfield, NJ

Phone 609-484-9011

This woman is only one of 6 nutrienist in the US who are licensed to run blood tests. That is how she determines what type of Nutrion is needed.

Good Luck.

Tony

Just came across all of this. All I can say is, we're thinking of you in St. Augustine. If for some strange reason you find yourself at Wolfson's in Jacksonville let us know so we can help you out.

We have finished our first full week of radiation. Mara is showing no ill effects from it yet and some of the symptoms seem less in fact. Maybe due to radiation but more likely due to Dexamethazone (steroids) and improved diet.

I continue to do research for plan B attach against this monster and my quest keeps returning me to diet, nutrician, and starving the tumor of sugars, salts, and bad carbohydrates.

We also have been exploring the Burzynski clinic in Houston. This Dr. uses alternative treatments with peptide therapy which he calls antineoplastons. The reviews are very mixed from those who he has cured glowing and the traditional western Dr's saying run away as fast as you can.

I do see a disconnect between traditional medice people and proper diet, cleansing immune system suppliments, anything herbal as well as the starve the cancer line of thinking. The ridged poison the problem train of thought makes me certain there is some common ground these theories need to find. Western Dr's insist upon FDA clinical studies, refuse anything that doesn't have years of investigation and are very resistant to stuff that doesnt speak to kill the problem.

More later, time for church.

Thanks guys,
Mark

Keep the faith, Brother. Mara is in our prayers!

They seem to understand "kill", but not why it starts, what triggers abnormal growth, etc. They are quick to blame nasty or unpopular chemicals and gasses as potential sources, but steer clear of food additives, growth hormones in the beef, pork, lamb and chicken we eat, genetically engineered farming etc. We are microwaving ourselves daily with our cell phones and computers. Are the lobbies that strong that they cannot be even questioned? In the 30 years of experience I have had with cancer in my family, I have seen NO major changes in the torturous Chemotherapy "kill" treatment, yet I have watched and seen major changes in the amount of money being thrown into Cancer organizations. One look at the Annual Report of The American Cancer Society will tell you it's become a big business in itself. Great Offices, big executive salaries, overhead up the wazoo. Some answers might put them out of business...oh my! I do not mean to diminish the daily efforts of the many who work to aid the suffering of the afflicted, but the billions of dollars over the past 50 years should have gotten us some better answers than asbestos and tobacco.

Other than chubby cheeks from dexamethazone and a hunger that is remarkable (she would eat the table if it had food stuck to it) she looks very good, in fact you wouldn't even know save some things only those very close can notice. Dads pride and joy.

mark
Our prayers are with you and your family,

Mark : Our thoughts and prayers are with you and your family.
I haven't read every post here, so maybe this has been mentioned previously, if so ,I apologize. Has "Protron Radiation" been mentioned by any of the doctors ? It is designed for primary brain tumors . There are only 4 places in the US that have these units, the most recent at Indiana University School of medicne I believe. A google search should give you the current info on this treatment. There is also another type of radiation treatment for brain tumors, the name of which escapes me now, but it consists of 201 low power beams ( no damage to surrounding tissue) that intersect at the tumor site, killing it.
Hopr this helps.
Best wishes,
Ted

Mark,

Your Mara is still in our thoughts a prayers.

Stay strong my friend.

Hang in there partner!!!

Mark Hang in there bud,
I know nothing of the doctor in Houston.
But if you come here let me know I am here to help any way I can, drive ya around take you fishing, whatever. Let me know, may even be able to take you to see Cranston... haha
Also we have an amazing medical center.

Thanks guys we are still looking at everything. Today was Childrens Milwaukee for a check up.

We continue to offer our best wishes for a positive outcome for your whole family. Many times during the day while working on my boat or driving somewhere I find my mind is occupied with sending positive thoughts to your daughter and your family.

Regardless of our own specific religious persuasion, or lack of one, all of us here who love the ocean know we are just a small part of a huge universe, and some power beyond our comprehension somehow created it. I believe when many of us focus on a single thing strength can be sent to those who need it, and daily my thoughts turn, as I am sure those of many others here do, to your daughter as well as your family. Know you are not alone, and know we are sending our strength your way.

One day at a time........

IRGuy wrote:We continue to offer our best wishes for a positive outcome for your whole family. Many times during the day while working on my boat or driving somewhere I find my mind is occupied with sending positive thoughts to your daughter and your family.

Regardless of our own specific religious persuasion, or lack of one, all of us here who love the ocean know we are just a small part of a huge universe, and some power beyond our comprehension somehow created it. I believe when many of us focus on a single thing strength can be sent to those who need it, and daily my thoughts turn, as I am sure those of many others here do, to your daughter as well as your family. Know you are not alone, and know we are sending our strength your way.

One day at a time........

very well said!! goes for me too.

Power of prayer works. A very old, and dear, family friend survived cancer twice, only recently to have heart problems so extensive that doctors told her there was no hope. 4 weeks ago today she went to The Cleveland Clinic and underwent urgent care to get her strong enough to attempt experimental surgery.

Two weeks ago, she had the lining of her heart removed, yesterday she sat up in a chair and ate, and had a feisty attitude, they anticipate her leaving the ICU on Wednesday and home in two weeks.

When she went into surgery, she was told she had a 10% chance of surviving surgery, and a 0% chance without it.

A lot of us prayed for her -- and even more are praying for Mara.

As her surgeon told her when he gave her the odds, his own father had the first heart transplant performed in this country -- someone has to be first.

More prayers from Connecticut for beautiful Mara!

Thought I would update this a bit. We are down to 7 days left in the radiation Chemo treatment plan then we have roughly a month to wait for the effects of the radiation to do its work and then some time in late April or early May we will have another MRI to see what we have accomplished.

In the mean time diet of no sugar and limited carbs will be enforced to try and starve the tumor. Again I am convinced that Ketones (nutrients from fat cells) vs sugars or glycolosis which is cancer food will be our goal. This is the same diet that is used in the treatment of seizure patients with great success. Not the letter of the law of the Ketogenic diet but so far pretty close. we have a nutrician consult with a couple of different Doctors that see things our way upcoming too.

Also we will be exploring further clinical trials if there is a need for it. I have found some people who have brain tumors and eat nothing but protein and vegetables and are considered to be remission.

Symptoms are none so far including side effects from treatment with the exception of a strip of hair that is thining around the back of her head from ear to ear. There is a pleasent calm around the house of late and even though sleep is still at a premium for me peace is present and it feels good. I pray it stays a while.

Some friends started a prayer page on facebook for her if anyone is interested or dabbles on Facebook.

http://www.facebook.com/home.php

Thanks again guys for the continued prayers and well wishes.

Mark

Mark:

Thanks for the update, once again Mara and your entire family are continued in my family's thoughts and prayers. I'm going to be bold, and probably overstep my bounds here, but I'm assuming that insurance isn't covering everything???? Please update your friends/family on here, as now is not the time for pride, now is the time for support, and I'd gladly like to start the ball rolling in that regard if you are incurring debt to cover Mara's expenses -- I suspect that some of the experimental is not covered.

Please advise, +we can't help everyone, but everyone can help someone" - Ronald Reagan