Request for Prayers
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- chris pague
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- Location: wicimico ch va,22579
Mark,
You and your family are in our thoughts...my son had a smiliar diagnosis at the age of three...he is now 11...life has a way kicking you in the balls..good friends and family help in the toughest of times...Childrens Hospital in Boston has the most amazing Doctors...My sons neurologist is heaven sent and if you want his email or cell I can get that for you..Hang in there you are not alone...BH
You and your family are in our thoughts...my son had a smiliar diagnosis at the age of three...he is now 11...life has a way kicking you in the balls..good friends and family help in the toughest of times...Childrens Hospital in Boston has the most amazing Doctors...My sons neurologist is heaven sent and if you want his email or cell I can get that for you..Hang in there you are not alone...BH
1966 31 Bahia Mar #316-512....8 years later..Resolute is now a reality..Builder to Boater..285 hours on the clocks..enjoying every minute..how many days till spring?
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Mark,
I don't post very often, although I do read this board several times a day.
I say this because I want you to know that there are a lot of us (lurkers) in your corner.
I have you, your family and especially your daughter on my mind, in my heart and as the focus of my prayers.
You & your little girl have more friends than you know.
Rit
I don't post very often, although I do read this board several times a day.
I say this because I want you to know that there are a lot of us (lurkers) in your corner.
I have you, your family and especially your daughter on my mind, in my heart and as the focus of my prayers.
You & your little girl have more friends than you know.
Rit
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- Location: Cape Cod MA.
- MarkS
- Senior Member
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- Joined: Jun 29th, '06, 08:40
- Location: The Frozen Tundra/EX-democratic stronghold Wisconsin
Hi all and I can't tell you how awesome you all are!!!
Today we got the news that we may be able to go home. As with almost every hospital things move way slower than one would like but that news perked Mara up for sure. She had a fair night last night with a good amount of sleep and only a little pain from the shunt surgeory
Our oncologists tell us this is going to be difficult as the glioma tumor is a problem for us. As I have decide from the begining there is only one direction we are travleing and this toward victory. We will start radiation therapy in a week or so. the doctors like the a full week after the shunt surgeory before we start radiation.
On a very bright note Mara pinned her dad down about the kitty she has been asking for for a while and of course we will be kitty shopping in the next days.
I am also going to be exploring all and any options and I really appreciate all of your thoughts. It is being thrown into something you now nothing about and expected to make a life and death decision. I will bereferencing this post in the coming days.
Thank you all again for support, my world is a bit full right now but know this we all thank you for the warm wishes. Please keep them coming!
Mark
Today we got the news that we may be able to go home. As with almost every hospital things move way slower than one would like but that news perked Mara up for sure. She had a fair night last night with a good amount of sleep and only a little pain from the shunt surgeory
Our oncologists tell us this is going to be difficult as the glioma tumor is a problem for us. As I have decide from the begining there is only one direction we are travleing and this toward victory. We will start radiation therapy in a week or so. the doctors like the a full week after the shunt surgeory before we start radiation.
On a very bright note Mara pinned her dad down about the kitty she has been asking for for a while and of course we will be kitty shopping in the next days.
I am also going to be exploring all and any options and I really appreciate all of your thoughts. It is being thrown into something you now nothing about and expected to make a life and death decision. I will bereferencing this post in the coming days.
Thank you all again for support, my world is a bit full right now but know this we all thank you for the warm wishes. Please keep them coming!
Mark
72 Bertram 25 FBC "Razorsharp" Hull #254-1849
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
- TailhookTom
- Senior Member
- Posts: 985
- Joined: Jul 3rd, '06, 14:12
Mark:
You and your wife, and of course Mara, are in my thoughts and prayers -- as Dug said, if you end up in the Northeast and I can do anything, please let me know -- I have two empty guest rooms!
There are many of us on this board that have personally experienced the power of prayer and positive thinking, myself included, therefore, keep believing and don't accept anything but the best treatment for your daughter. Ask questions and push for service - while I was undergoing treatment I remembered 5 two letter words one of my baseball coaches used to tell us "If it is to be, it is up to me." remember that everytime someone says they can't or won't do something for her!
Tom
You and your wife, and of course Mara, are in my thoughts and prayers -- as Dug said, if you end up in the Northeast and I can do anything, please let me know -- I have two empty guest rooms!
There are many of us on this board that have personally experienced the power of prayer and positive thinking, myself included, therefore, keep believing and don't accept anything but the best treatment for your daughter. Ask questions and push for service - while I was undergoing treatment I remembered 5 two letter words one of my baseball coaches used to tell us "If it is to be, it is up to me." remember that everytime someone says they can't or won't do something for her!
Tom
- In Memory Walter K
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Similar experiences. Accept nothing as it is. Ask questions. Get second and third opinions. Trust your gut more than the doctors. Do your homework and become an expert on the subject. Question every single thing they do, read every prescription, check every pill, Google every doctor. I always remember the words my daughter who is presently a doctor at Duke University Hospital, said to me about doctors..."Remember Dad, someone always graduates last in Medical school".
You are your Daughter's advocate and protector. I have caught too many errors, wrong medications/prescriptions/dosages to be overly trusting. Be strong my friend, your family has never needed you more. Ask for anything you need and one of us will be there for you. Walter
You are your Daughter's advocate and protector. I have caught too many errors, wrong medications/prescriptions/dosages to be overly trusting. Be strong my friend, your family has never needed you more. Ask for anything you need and one of us will be there for you. Walter
- Mike Moran
- Posts: 82
- Joined: Jul 2nd, '06, 19:01
- Location: Madison Ct.
post subject
I go to mass most every morning she will be in our prayer book God bless her
Mark - I echo what Walter is saying.
My youngest son has a Traechostomy for the first 18 months of his life. My wife has researched everything to the fullest extent and we question everything. Make sure to research the hospital. We chose to go out of state (actually out of country at the time) to Cincinnati Childrens.
We do not (fortunately) have any experience with pediatric oncology.
Read, research and ask lots of questions.
Hang in there!
Ian.
My youngest son has a Traechostomy for the first 18 months of his life. My wife has researched everything to the fullest extent and we question everything. Make sure to research the hospital. We chose to go out of state (actually out of country at the time) to Cincinnati Childrens.
We do not (fortunately) have any experience with pediatric oncology.
Read, research and ask lots of questions.
Hang in there!
Ian.
- Capt.Frank
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- MarkS
- Senior Member
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- Location: The Frozen Tundra/EX-democratic stronghold Wisconsin
Just a quick couple of picks of good times. The new kitty and the family.
72 Bertram 25 FBC "Razorsharp" Hull #254-1849
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
- In Memory of Vicroy
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- Location: Baton Rouge, LA
- matt ciarpella
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- Location: Baltimore, Md
- scenarioL113
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- Location: Massapequa Park, NY
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!
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!
1971 28 Bertram
4BT Cummins
Frank
9-11-01 NEVER FORGET
4BT Cummins
Frank
9-11-01 NEVER FORGET
- MarkS
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- Joined: Jun 29th, '06, 08:40
- Location: The Frozen Tundra/EX-democratic stronghold Wisconsin
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.
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.
72 Bertram 25 FBC "Razorsharp" Hull #254-1849
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
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.
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.
- Gert van Leest
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- MarkS
- Senior Member
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- Joined: Jun 29th, '06, 08:40
- Location: The Frozen Tundra/EX-democratic stronghold Wisconsin
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!
72 Bertram 25 FBC "Razorsharp" Hull #254-1849
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
- In Memory Walter K
- Senior Member
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- Location: East Hampton LI, NY
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- MarkS
- Senior Member
- Posts: 1160
- Joined: Jun 29th, '06, 08:40
- Location: The Frozen Tundra/EX-democratic stronghold Wisconsin
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
Good looking buddy you got there Hueso. Squeeze him once for me.
Mark
72 Bertram 25 FBC "Razorsharp" Hull #254-1849
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
- In Memory Walter K
- Senior Member
- Posts: 2912
- Joined: Jun 30th, '06, 21:25
- Location: East Hampton LI, NY
- Contact:
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
1966 31 Bahia Mar #316-512....8 years later..Resolute is now a reality..Builder to Boater..285 hours on the clocks..enjoying every minute..how many days till spring?
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.
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.
- MarkS
- Senior Member
- Posts: 1160
- Joined: Jun 29th, '06, 08:40
- Location: The Frozen Tundra/EX-democratic stronghold Wisconsin
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
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
72 Bertram 25 FBC "Razorsharp" Hull #254-1849
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
Things of quality have no fear of time.
Bondage to spiritual faith faith to great courage courage to liberty liberty to abundance abundance to complacency to apathy to dependence to bondage
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.
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.
Frank B
1983 Bertram 33 FBC "Phoenix"
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Trump lied! Washington DC isn't a swamp.. it is a cesspool!
1983 Bertram 33 FBC "Phoenix"
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Trump lied! Washington DC isn't a swamp.. it is a cesspool!
- In Memory Walter K
- Senior Member
- Posts: 2912
- Joined: Jun 30th, '06, 21:25
- Location: East Hampton LI, NY
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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.
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.
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