Mara Update

MarkS · Post by **MarkS** » May 16th, '11, 09:28

I had been contacted by a number of you guys regarding Mara's status so I thought I would post a little something about how we are fighting. Mara has completed her standard course of radiation and chemotherapy and we gained about 1/3 against this monster.

We are currently exploring alternative courses of action as traditional therapies have been exhausted. We are looking at the Burzynski Clinic in Houston and fortunately we have wonderful friends there like John Cranston and Danny McKinney who thanks to the Captain and this website we found for a reason I am sure, and who will help us and stand by us if and when we go down there.

As well we continue to work with diet and control of certain elements in the blood which can aid in tumor death and inhibit its growth. Other than that clinical trials are very limited against this type of brain tumor as out of 150-200 kids a year get brain tumors only 10-15 are DIPG and not many parents are willing to toss their kid up on the table and say, "Go ahead and stir around and see what you can do!" Most, like my wife and I opt for what is more tried and true even though the average life of a child with Diffuse Intrinsic Pontine Glioma is 8 months to a year and a half.

One bright note was the Kim Pope Memorial Ride which was held about a week ago where 250 entered a 100 mile senic ride through the Wisconsin country side on motorcycles and a number of classic cars on Mara's behalf. Kim Pope was a young woman who was stricken with a brain tumor that eventually consummed her and her husband an avid Harley man and his buddies started this ride 7 years ago in her memmory.

I have posted a link on Mara's FaceBook Prayer page which shows the view I had from the front of the pack in a side car I shot video which shows the miles and miles of motorcycles that followed this incredibly organized event as we climbed a hill you can see motorcycle headlights until we crested the hill and they went out of sight.

It was sort of like going to a Green Bay Packers Footbal game where you party with 65,000 of your closest friends but it was over 250 of some tough looking bikers to guys who normally where a suit and tie to work evey day. It was a very moving experience for both myself and my wife. Mara sort of found it a little overwhelming and a bit intimidating but she was rained down with gifts and love from each and every one of them and was made to feel like a queen for the day.

http://www.facebook.com/profile.php?id=100001974116481

Thanks again for the continued prayers guys we fight on!

Great health to you all,
Mark

Dug · Post by **Dug** » May 16th, '11, 10:16

Mark,

I have been wondering and thinking, and hoping for your daughter, you and your family. Thank you so much for your update.

I am glad she was queen for a day there. I bet she really enjoyed it.

Is there anything we here as friends on the board can do? Please tell us if there is.

Thank you again for sharing.

Dug

Charlie J · Post by **Charlie J** » May 16th, '11, 10:31

mark
thanks for the update. i like dug was thinking the other day about mara, my prayers are and always will be for you and your family and of course mara

jspiezio · Post by **jspiezio** » May 16th, '11, 10:59

I was thinking of you and your family as well. My prayers are still with you.

Tom · Post by **Tom** » May 16th, '11, 13:37

Mark, I live very close to the Burzynski clinic. Within a couple miles. Don't know anything about it. But, I can offer support, a cold drink, and anything else in my power. I've got a 5 year old daughter, our only. I cannot imagine....281-814-7021 Tom Pattillo

Rickysa · Post by **Rickysa** » May 16th, '11, 13:47

Mark, I echo Tom's statement...I just can't imagine. I'm sitting here with a newly shaved head after contributing to the St. Baldricks Foundation.

Prayers for your little angel.

Rick

eta: PM sent

In Memory Walter K · Post by **In Memory Walter K** » May 16th, '11, 15:19

Mark- Thanks for the update as we've been wondering and figured you were busy as hell keeping up with what has to be done and didn't need to write responses. No matter where you end up going for treatment, there will be a Bertram Brethren nearby to offer assistance. You can count on it. Walter

Tony Meola · Post by **Tony Meola** » May 16th, '11, 20:42

Mark

As you know, we all keep on praying for Mara. Glad you posted an update. Please keep us all updated on her progress.

Harry Babb · Post by **Harry Babb** » May 16th, '11, 21:20

Our prayers are with Mara and your family, Mark.

hb

coolair · Post by **coolair** » May 16th, '11, 22:44

Mark,
Still thinking of you and your family. I am here in houston too. Closer to medical center and hobby air port, but will help how ever i can when/if you come.

Hueso · Post by **Hueso** » May 17th, '11, 07:49

Our prayers with Mara and your family. Keep pushing!

Rawleigh · Post by **Rawleigh** » May 17th, '11, 09:19

Mark: Thanks for the update. I have been thinking of you guys, but was afraid to ask. Godspeed!!

MarkS · Post by **MarkS** » May 17th, '11, 12:40

Thanks a lot guys I will keep all of this in mind. Right now we are struggling with steroids and the proper amount to keep her functional. Radiation beat her up pretty bad and we are doing our best to keep the inflamation down around the tumor with the Dexamethazone. Its rotten shit it makes her ravenously hungry, an emotional basket case and she looks like a budda but without it she has a lack of balance and her eyesight which is still not real good gets much worse.

If you want a first hand description of what brand of hell comes with this bastard just do a search on DIPG. It will make you want to throw up.

As always my best to you all,
-M

opunui · Post by **opunui** » May 17th, '11, 14:13

We will be praying also from across the pond. Good luck. If there is anything we can do or send your little one let me know.

Aloha, Bobby

lpd3 · Post by **lpd3** » May 17th, '11, 19:42

Mark,

Thank you for the update. I have been wondering how Mara was doing and wish her well. When in Houston if you need help with anything please call. 2817888950.

Louis

Tommy · Post by **Tommy** » May 17th, '11, 20:25

Lord, we lift up Mara, Mark and the entire family up to You as she fights this terrible disease. Give her doctors wisdom, give Mara comfort, and give her family peace. We ask that you restore her to her full measure of health. Protect that beautiful child of Yours. In Your Name, Amen.

JohnD · Post by **JohnD** » May 17th, '11, 22:46

Mark,

Thanks for taking some time to give us an update on Mara and we will contine to pray and pray harder for her, you and your family.

If you find yourself anywhere near Baltimore, please let us know. We'd be happy to help in anyway.

-JohnD

Hueso · Post by **Hueso** » May 18th, '11, 09:53

Guys:

This is just a quick reference of what Mara, Mark and his family is going through.

http://riahsrainbow.org/id14.html

All my prayers with Mara at this moment. Do not give up and keep fighting.

In Memory Walter K · Post by **In Memory Walter K** » May 18th, '11, 11:51

I wish I hadn't read that. I have watched what Chemotherapy and radiation did to my sister and both my wives. As horrible as it was, this sounds worse. My heart goes out to all concerned. Pray for a miracle guys.

Dug · Post by **Dug** » May 18th, '11, 12:26

She must be a strong and amazing girl. With strong and amazing parents. I have friended her prayer page on Facebook, and it tells a wonderful story in pictures and thoughts.

Keep it up guys. Keep up the praying. Maybe, just maybe it will help as it may have in the past.

And Mara, this group of big guys who live and love to fish, boat and enjoy life and each other are thinking of you. We really are. Big hugs, and feel better!!!!

Dug

Wingnut · Post by **Wingnut** » May 18th, '11, 19:11

Praying for you and Mara! Keep up the good fight.

JD

Tony Meola · Post by **Tony Meola** » May 18th, '11, 21:48

This looks like a tough one. Hang in there, we will keep Mara in our prayers.

randall · Post by **randall** » May 19th, '11, 08:21

in our thoughts and prayers.

Captn Bruce · Post by **Captn Bruce** » May 19th, '11, 21:56

Mark,

Mara and your family are in our prayers.

Bruce D.

MarkS · Post by **MarkS** » May 20th, '11, 09:02

We got some good news yesterday at Mara's checkup. The Doctors notes from two weeks ago to yesterday show marked improvement of side effects. We can only hope this correlates to whats going on inside. We also got to reduce the dexamethazone a little and that is always welcome.

Thanks for the prayers guys and the Facebook friends as well.
As always you guys are awesome!

-M

Dug · Post by **Dug** » May 20th, '11, 11:32

Mark,

That is amazing and wonderful!!!! Lets keep it up!!!!!!!

Big smiles!!!

Dug

Carl · Post by **Carl** » May 20th, '11, 14:44

Thank you for the update and good news.

Mara is always in my prayers.

Carl

DanielM · Post by **DanielM** » May 23rd, '11, 00:10

Mark,

Iâ€™ve been away from the computer for a few weeks due to work. Johnâ€™s been keeping me updated.

Mara is in our prayers. If your fight brings you to Houston weâ€™ll be there for you.

Danny

Gert van Leest · Post by **Gert van Leest** » May 24th, '11, 17:27

Hi Marc ,

the first time I read your Message , my stommage turned , I have 3 little boys 2.4.7. and my greatest nightmare .................
If you can and want , come down to the Netherlands , I have plenty of space to harvest you and your family , and come to have a look at the tulips....
My hart is with you !! .........and you are more than welcome !!

MarkS · Post by **MarkS** » Jul 8th, '11, 07:16

We are currently in Houston staying with The Cranstons and hanging with the McKinney's too, John has an awesome place and I can't say more about the size of Texas hospitality! Words can not be spoken to describe the way these people have laid it out for us.

Spent the better part of the day at the Burzynski Clinic on Thursday. He tells us he has a number of long time surviors with DIPG which is more than the traditional western medicine guys have told us. Down side is an extended stay in Houston, a therapy the involves a pump Mara has to carry and a port for medicine that gets introduced for a number of hours a day for about a year.

Today is MD Anderson to see what they might have.

Stay well all, hospitals are no fun.........................

M

PeterPalmieri · Post by **PeterPalmieri** » Jul 8th, '11, 07:27

Best of luck Mark, you guys are doing great!

randall · Post by **randall** » Jul 8th, '11, 08:29

words kind of escape me on this. i admire the ferocity of your willingness to battle and like everyone wish you nothing but the best possible outcome.

In Memory Walter K · Post by **In Memory Walter K** » Jul 8th, '11, 08:43

Surrender is not an option!

IRGuy · Post by **IRGuy** » Jul 8th, '11, 09:25

Mark...

One of my daughter's best friends has had a pump for at least 10 years and I recall when she first got it she had maybe a few weeks of discomfort which faded away.. after that she was able to do almost anything a normal kid would do. Kids have an amazing capability to adapt and get on with their lives. I guess this is due to their innocence.

Know that there are lots of us here who think of your family every day, sending Mara and you and your wife our thoughts and love. Keep fighting!

One day at a time!

TailhookTom · Post by **TailhookTom** » Jul 8th, '11, 10:28

Mark: Continued prayers for all of you. Keep fighting, never give up, never, ever, give up.

Tom

Tommy · Post by **Tommy** » Jul 8th, '11, 11:03

Mark,

I have several friends who have had excellent results from the wonderful medical staff at MD Anderson. Our prayers continue for Mara, you and your entire family that you will experience similar results. It's pretty cool how this website weaves people's lives together in ways other than just boating.

mike ohlstein · Post by **mike ohlstein** » Jul 8th, '11, 11:06

Tommy wrote:It's pretty cool how this website weaves people's lives together in ways other than just boating.

Amen to that......

Dug · Post by **Dug** » Jul 8th, '11, 13:12

Mark and family, and especially Mara,

Ive been posting on your facebook page often with the intent of showing that I and others are thinking of you. Hoping with you. Praying for you. Admiration for you and your courage, and strength is for sure there and in force.

Keep it up, don't slack it, you have our love and support. Just ask if you need it! Its there in any form we can.

Dug

randall · Post by **randall** » Jul 8th, '11, 16:00

mike ohlstein wrote: Amen to that......

X2

Bob H. · Post by **Bob H.** » Jul 8th, '11, 19:58

Marc, Your family is in our thoughts,your in great hands...A Bertram Brother in need has alot of friends indeed..Way to go Cranstons...amazing sandbox..BH

Tony Meola · Post by **Tony Meola** » Jul 10th, '11, 22:45

Marc

Our prayers continue for you guys. Keep the faith. My Nephew who had brain cancer, who it was not looking good for was just told he is cancer free. Keep the faith. They are making great progress against this stuff.

DanielM · Post by **DanielM** » Jul 10th, '11, 22:51

Mark,

It was great to see you again and to meet Mara.

Guys, when I went to pick them up at the airport minutes after meeting me for the fist time Mara informed me how cute I looked carrying a girls suit case as I was helping with her auntâ€™s bagâ€¦She's a lot of fun, and she picked up a little Texan while she was down here. "Howdy Y'all"

Mark, Lehann, & Liz (Maraâ€™s aunt) are great folks, and wonderful champions for Mara. Only wish there was more we could do. Keep up the good fight.

Best Regards,
DanielM

Capt. DQ · Post by **Capt. DQ** » Jul 11th, '11, 11:45

Mark,

Thoughts & Prayers for Mara & Your family as always since you first informed us about her condition.

DQ

MarkS · Post by **MarkS** » Jul 11th, '11, 15:01

Thanks Guys as always much appreciated! It was a whirrlwind trip but we managed to pack in the Aquarium (Thanks Danny) and the live butterfly display at the museum, totally amazing!

Danny whipped up a Texas size fish fry and we also did an all you can eat shrimp gig that left us all moaning, not to mention we packed our own liquids under the table. Texas, what a country!!

Day two took us to MD Anderson and some further potocal to contemplate.
They have a multiple chemo and blood pressure/seizure medicine cocktail that the peds oncologist has had success with in controlling progression of the tumor.

My wife turns colors when we talk about Burzynski mostly because of the port and the pump and the bag that Mara will have to use for an extended time, me, more of the solve it now train of thought but peace must be kept at home or it all falls apart so we will start with Anderson.

Our search for the answers will continue as well.

You guys are super and thanks again,
Mark

TailhookTom · Post by **TailhookTom** » Jul 11th, '11, 15:38

Mark:

Thanks for the update - I can't imagine how you guys sleep -- if you do! Continued prayers and best wishes headed your way. I guess I am not surprised that a bunch of people who are so passionate about their boats, could be even more passionate about doing what we can to help a family and a beautiful little girl, any way we can.

How priceless that must have been to be told how cute you looked carrying a girl's suitcase -- just another example of the charm of Mara!

And a wise choice you made, Mark, the only thing more ferocious than a momma lion, would be a momma -- gotta pick your battles and as Sun Tzu said - when you are facing an opponent of higher strength, it is best to retreat!!!!!

Tom

tunawish · Post by **tunawish** » Jul 11th, '11, 20:37

Mark,

Keeping you in our thoughts and prayers...

Ray

scot · Post by **scot** » Jul 11th, '11, 22:13

My prayers are with Mara and your family Mark. Keep up the good fight.

coolair · Post by **coolair** » Jul 11th, '11, 22:49

what the hell! yall come down, eat shrimp, drink all the booze, hell i bet john even dressed in drag again, and you dont invite me?? that hurts.
haha glad yall had a good time!

Mark in all seriousnes, while you are here or when you are here if you need anything please let me khow as well. I am more than happy to help in any way I can, We have a place alittle closer than Johns, so if you want to get to the bay and see the ocean no problem, whatever just name. I am not sure where Daniel lives, but I am pretty close to the med center, so its nothing to cruze over there. I think md aderson is the best place to be if you gotta be in one of those places. As always we are praying for yall, think positive.
Matt
7132069596

MarkS · Post by **MarkS** » Jul 12th, '11, 18:37

Matt I will put you on the to do list next trip amigo! Couple pics of Reel Cowboy, one with me an a couple of hotties.

Thanks again all!

-M

http://www5.snapfish.com/snapfish/slide ... =snapfish/

http://www5.snapfish.com/snapfish/slide ... =snapfish/

JohnD · Post by **JohnD** » Jul 12th, '11, 19:51

Mark,

Glad to hear Mara's making some progress regarding treatments. We're continuining prayers for Mara and your family.

If you find your travels bring you to MD, we're close to BWI and Hopkins.

Regards,
JohnD

bertram31.com

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