http://hhsca.org/
This Chicago-based, Sickle Cell Disease Organization rocks!! We just met
them this past weekend and we love them and their message and outreach.
Monday, March 7, 2016
How Apple Sidesteps Billions in Global Taxes
Read this, and ask yourself why the state of IL has to cut public aid
funding for people like Marqus who suffer from a horrific, debilitating
disease like Sickle Cell Disease, while companies like Apple can easily
evade paying millions of dollars in taxes. Check yourself, Apple,
because you're in the wrong. http://www.nytimes.com/2012/04/29/business/apples-tax-strategy-aims-at-low-tax-states-and-nations.html?_r=2&hp
New Book Offers Hope and Helpful Advice for Patients with Sickle Cell Disease
From Emory University's Woodruff Health Sciences Center. "New Book
Offers Hope and Helpful Advice for Patients with Sickle Cell Disease." http://shared.web.emory.edu/whsc/news/releases/2011/06/new-book-offers-hope-and-helpful-advice-for-patients-with-sickle-cell-disease.html
Wednesday, March 2, 2016
Politics on the Mind
Politics may not be in the fore front of everyone's mind. Don't
I'm still waiting to actually hear something professional from
I do realize that many folks also are not grateful for their
be fooled by the grand standing and what the media shows us. Keep in mind
unless one of these politicians experienced a life altering
Experience from illness they have no idea nor due they care.
Look at the senator that had a stroke,lots of Press coverage
when he walks the Capital stairs to go back to work.
I will ask how many of our warriors had
State of the art rehab?
How many of our warriors are offered
Speech therapy, occupational therapy,
Hippo therapy, rehab so stellar they can walk up those stairs.?
After Marqus severe seizures we did the rehab.
Politicians set our laws supposedly to reflect the wishes of the
people.
We are very busy holding down our responsibilities all while
keeping our warriors here BUT take a minute and ask if the folks we vote for
will make any difference.
It's on us to speak up and speak out.
My phone rang and they asked if I had questions for a local
candidate. Of course I said yes ! Guess what they couldn't answer any of them
instead I received the typical cookie cutter answers.
I'm still waiting to actually hear something professional from
our candidates.
I have heard the irrelevant, hateful nonsense that our kids
would be sent to the principal 's office for.
Be sure to vote no matter what vote.
Ask questions anytime you get a chance and see if you get
answers.
No government is perfect no government will fully take care of
anyone but they shouldn't make our lives worse with infighting and nonsense.
next sunrise because theirs it's not in question. - Mama Fran
Sunday, February 28, 2016
Updates on Marqus' Condition: 1/28/2016 Hospitalization
They drop in the presence of any type of infection. He recognized the potential infection source - bladder and acted quickly. Despite antibiotics he still needs hydration beyond what he can consume by mouth.
Remember your kidneys also need water
to function properly. Avoid sugary drinks, caffeine , alcohol, fake sweeteners , food colouring and other things that stress the body.
Everything we put in our body is used then the excess is cleared.
Studies have shown that aspartame and many other chemicals and colourings have side effects.
By law certain chemicals are allowed but they are tested and the amounts pertain to servings. Most people do not eat or drink a serving of anything.
When is the last time anyone ate 1/2 to 3/4 cup of cereal? It's advertised as a bowl. Take home message Kidneys need WATER.
Remember your kidneys also need water
to function properly. Avoid sugary drinks, caffeine , alcohol, fake sweeteners , food colouring and other things that stress the body.
Everything we put in our body is used then the excess is cleared.
Studies have shown that aspartame and many other chemicals and colourings have side effects.
By law certain chemicals are allowed but they are tested and the amounts pertain to servings. Most people do not eat or drink a serving of anything.
When is the last time anyone ate 1/2 to 3/4 cup of cereal? It's advertised as a bowl. Take home message Kidneys need WATER.
By the way Google Silly Putty in food and see what you get. Post your comments!! It surprised me and let's just say I plan to keep reading my labels. - Momma Fran Valentine
Updates on Marqus' Condition: Hospitalization 01/28/2016
So it will be lots of warm packs and elevation for that bruised puffy arm.
Then in the middle of our 2 hr dressing change for his wounds the second IV infiltrated . Now the entire arm looks puffy from hand to shoulder.
So, I am in the waiting room while they try a bedside PICC if that fails it's off to interventional radiology.
His Hg is 6.5 and he needs blood.
Good news the creatinine (kidney function test) is back to normal.
Auntie Yma came to the hospital this morning and held us up for prayer we really need that now. She gave us some wonderful Gospel songs to listen to.
Also my amazing friends at work donated 260 hrs of leave to me!!!
Without that I would have been forced to basically retire broke and before I'm ready. The other choice would have meant not being fully able to care for Marqus .
Ok well just an update ...will try not to be too battle weary. I know Marqus is pretty beat down worn out and frustrated .
So I'm praying for more strength. - Momma Fran
Updates on Marqus - Love Mama Fran
February 21, 2016
Hello Sickle Cell family.
Marqus is still going strong.
He had more teeth repaired .
He's made it thru another infection , more transfusions, RBC infiltrate, another PICC line , wound debridement, and now an upper respiratory virus.
Marqus is still going strong.
He had more teeth repaired .
He's made it thru another infection , more transfusions, RBC infiltrate, another PICC line , wound debridement, and now an upper respiratory virus.
Ok hang on before you say Oh my goodness , he still made it to get a hair cut, tried to fix a faucet , made it to part of service dog training class, started to somehow straighten his room a bit
and still asked me if my asthma was ok.
and still asked me if my asthma was ok.
He never ceases to amaze me.
Looking forward to spring. We need warmth.
Looking forward to spring. We need warmth.
Sickle Cell warriors keep fighting
It's do what you can and be sure to take care of yourself in between.
It's do what you can and be sure to take care of yourself in between.
Dear everyone,
A cough and sneeze can travel up to 13 feet. Use Kleenex, wash your hands , don't visit folks when your sick.
By the way , hand washing is SOAP and water while you scrub and sing happy birthday.
A cough and sneeze can travel up to 13 feet. Use Kleenex, wash your hands , don't visit folks when your sick.
By the way , hand washing is SOAP and water while you scrub and sing happy birthday.
Oh I almost forgot NEVER EVER
Be shy about asking a health care person to wash their hands before touching you.
Be shy about asking a health care person to wash their hands before touching you.
Love Mama Fran
Sunday, January 24, 2016
Welcome Back to the Blog
Hello and thank you in advance for allowing me to share with you.
I can't believe the last blog was in 2013. Time flies by like the speed of light .
We have a lot to share Sickle Cell has a new momentum and hopefully our story
is an inspiration for everyone to push ahead for new research, new drugs unique to us , new legislation, inclusion in policies, push the envelope for a cure and recognition for our strength
often in the face of adversity. We will move forward from "oh yeah I think I had a cousin with that"
to knowing our status ,understanding genetics , speaking with the authority this life threatening disease commands.
February 2016 will mark 2 years since our participation in the FDA public hearing for persons with sickle cell disease. The experience was life changing. Until that moment in time we had not been
in the same space with thousands of stakeholders for sickle cell disease. The hearing was not only live in Silver Springs MD but comments were taken by computer and by phone from across the USA.
There is strength in numbers but in addition to numbers there is power in knowledge .
I urge all persons , friends , family , stakeholders anyone who cares about someone with Sickle Cell Anemia to understand the science.
Learn the terminology, the condition and potential complications know where to find answers and
if anything is remiss keep questioning .
Over five years ago Marqus had a dream to make a film a documentary about Sickle Cell
not because he was seeking 5 minutes of fame but rather he felt there was a need for the story to be told.
Marqus is now 32 years old and in the years from dream to reality many changes have occurred many
challenges have crossed our path.
As we fill the pages and the screen with our life even the messy painful terrifying stuff
plus the joys , triumphs and accomplishments please follow , join us on the renewed journey.
We will continue to share as well as honor those that are not here to see the films completion.
Life comes with no guarantee no specific road map, no matter how hard we try to make one as humans.
We plan , save , have lists , goals , spread sheets, insurance , retirement , education, work, vacation, build relationships , lose relationships and so much in between . Despite our best efforts still no guarantee and what better teacher than a person whose mortality is in question.
Early on we had to brace for the question will Marqus grow up ? Then we realized that we can't truly live in that dark place. Instead we chose to be grateful for each sunrise push forward and embrace
things that may seem trivial to some.
Please don't get me wrong having a disease that wages a war on each and every part of the body
is hell. As a mother and a RN of 38 years I would be lying if I didn't tell you how my heart brakes with each damaged body part and with each complication .
BUT none of us will succumb to any form of despair. Marqus from day one had to be tough
and we have to be tough with him and for each other.
Right now in real time the thought crosses my mind will the documentary be finished
while we have another sunrise. I fight this thought by stepping out on faith and working to lessen complications that can be controlled. We know that as we watch him walk, ride a horse in therapy , go to dog training class for his service dogs to be, work with his sister and brother and others on the film, smile, laugh and have consideration for others despite non healing painful wounds on both ankles with his Oxygen strapped to his back that we have to stay tough , stay the course we can not and will not buckle. He fights for his life and we are with him. There are so many Warriors just like Marqus. Since the inception of the dream and all the changes along the way Marqus has endured many insults to his body. We are in recovery mode again and are working to renew our spirits .
Stick with us ,follow us ,we thank you so much. There is more to come and much more work to do.
Luv Mama Fran
I can't believe the last blog was in 2013. Time flies by like the speed of light .
We have a lot to share Sickle Cell has a new momentum and hopefully our story
is an inspiration for everyone to push ahead for new research, new drugs unique to us , new legislation, inclusion in policies, push the envelope for a cure and recognition for our strength
often in the face of adversity. We will move forward from "oh yeah I think I had a cousin with that"
to knowing our status ,understanding genetics , speaking with the authority this life threatening disease commands.
February 2016 will mark 2 years since our participation in the FDA public hearing for persons with sickle cell disease. The experience was life changing. Until that moment in time we had not been
in the same space with thousands of stakeholders for sickle cell disease. The hearing was not only live in Silver Springs MD but comments were taken by computer and by phone from across the USA.
There is strength in numbers but in addition to numbers there is power in knowledge .
I urge all persons , friends , family , stakeholders anyone who cares about someone with Sickle Cell Anemia to understand the science.
Learn the terminology, the condition and potential complications know where to find answers and
if anything is remiss keep questioning .
Over five years ago Marqus had a dream to make a film a documentary about Sickle Cell
not because he was seeking 5 minutes of fame but rather he felt there was a need for the story to be told.
Marqus is now 32 years old and in the years from dream to reality many changes have occurred many
challenges have crossed our path.
As we fill the pages and the screen with our life even the messy painful terrifying stuff
plus the joys , triumphs and accomplishments please follow , join us on the renewed journey.
We will continue to share as well as honor those that are not here to see the films completion.
Life comes with no guarantee no specific road map, no matter how hard we try to make one as humans.
We plan , save , have lists , goals , spread sheets, insurance , retirement , education, work, vacation, build relationships , lose relationships and so much in between . Despite our best efforts still no guarantee and what better teacher than a person whose mortality is in question.
Early on we had to brace for the question will Marqus grow up ? Then we realized that we can't truly live in that dark place. Instead we chose to be grateful for each sunrise push forward and embrace
things that may seem trivial to some.
Please don't get me wrong having a disease that wages a war on each and every part of the body
is hell. As a mother and a RN of 38 years I would be lying if I didn't tell you how my heart brakes with each damaged body part and with each complication .
BUT none of us will succumb to any form of despair. Marqus from day one had to be tough
and we have to be tough with him and for each other.
Right now in real time the thought crosses my mind will the documentary be finished
while we have another sunrise. I fight this thought by stepping out on faith and working to lessen complications that can be controlled. We know that as we watch him walk, ride a horse in therapy , go to dog training class for his service dogs to be, work with his sister and brother and others on the film, smile, laugh and have consideration for others despite non healing painful wounds on both ankles with his Oxygen strapped to his back that we have to stay tough , stay the course we can not and will not buckle. He fights for his life and we are with him. There are so many Warriors just like Marqus. Since the inception of the dream and all the changes along the way Marqus has endured many insults to his body. We are in recovery mode again and are working to renew our spirits .
Stick with us ,follow us ,we thank you so much. There is more to come and much more work to do.
Luv Mama Fran
Monday, January 4, 2016
Photo: Nothing keeps a warrior down!
Nothing keeps a warrior down. Not even leg wounds and no boots to fit! My hero.
Friday, December 25, 2015
Merry Christmas Sickle Cell Family
Dear Sickle Cell family where ever you are today wishing you a beautiful calm
Blessed day.
Because we know that Sickle Cell doesn't have a holiday if you're in the hospital we pray for less pain and a speedy recovery. - Momma Fran
Blessed day.
Because we know that Sickle Cell doesn't have a holiday if you're in the hospital we pray for less pain and a speedy recovery. - Momma Fran
Tuesday, December 1, 2015
Jewelry for a cause!
FOR EVERY ITEM PURCHASED $10 $20 IS DONATED TO THE ASSOCIATED CAUSE. $1,879,090 raised to date for many causes From www.bravelets.com
Visit the web site their is still time for double donation from each bravelet purchase to go to your charity.
We purchased for Brave Hearts our therapeutic riding stable.
Let's see Sickle Cell here soon.
www.bravelets.com
SICK CELLS STRONG HEART
Story by Francesca Valentine on Dec 01, 2015
Even though the title of his documentary is Sick Cells you would never know that his
condition Sickle Cell Anemia has waged a war on his body. His heart and soul are bigger than life and despite irreversible damage , excruciating pain and days where he may wonder about the next sunrise Marqus always has a kind word , a considerate thought , a smile and faith. He is my definition of Be Brave. He recently had to scratch the Special Olympics with Brave Hearts our therapeutic riding facility. While he was disappointed he was not sad because he was able to see another birthday after life threatening complications this July.
Even with painful open non healing lower leg wounds I will wake in the early am to find that he has went downstairs and put a water bottle at my bedside. He walks his therapy dogs no matter what plus straps on his Oxygen pack and heads out to dog training classes.
His dream is to finish his documentary not just for himself but for the Angels that have gone before him and to raise awareness.
During the last few months his sister has taken the reins to help him.
None of us were ready in July to be in this world without our Marqus . He is a gift .
My husband and I have walked the hospital floors for years managed all the treatments , the blood transfusion, medical appointments , surgeries , medications , bills and even a 2013 flood (that left him with non healing wounds so far to date of 2 years) and a very broken house we can barely keep and none of that can compare to agony we felt wondering if he would pull though this last crises.
Please know his story is that of strength , faith , love , the will to live , concern for others and the desire to honor those that have died. The daily struggle to keep up is small in comparison to our son's inner strength and for that we know he is BRAVE.
I plan to wear my bracelet to remind me in the middle of the night when my mind listens to the rhythmic sound of the O2 concentrator that its ok to fall asleep because
we have to keep the faith that the sun rises on us all in the morning.
A cure is evolving new treatments are hopeful I will Be Brave for our family.
https://www.bravelets.com/
Visit the web site their is still time for double donation from each bravelet purchase to go to your charity.
We purchased for Brave Hearts our therapeutic riding stable.
Let's see Sickle Cell here soon.
www.bravelets.com
SICK CELLS STRONG HEART
Story by Francesca Valentine on Dec 01, 2015
Even though the title of his documentary is Sick Cells you would never know that his
condition Sickle Cell Anemia has waged a war on his body. His heart and soul are bigger than life and despite irreversible damage , excruciating pain and days where he may wonder about the next sunrise Marqus always has a kind word , a considerate thought , a smile and faith. He is my definition of Be Brave. He recently had to scratch the Special Olympics with Brave Hearts our therapeutic riding facility. While he was disappointed he was not sad because he was able to see another birthday after life threatening complications this July.
Even with painful open non healing lower leg wounds I will wake in the early am to find that he has went downstairs and put a water bottle at my bedside. He walks his therapy dogs no matter what plus straps on his Oxygen pack and heads out to dog training classes.
His dream is to finish his documentary not just for himself but for the Angels that have gone before him and to raise awareness.
During the last few months his sister has taken the reins to help him.
None of us were ready in July to be in this world without our Marqus . He is a gift .
My husband and I have walked the hospital floors for years managed all the treatments , the blood transfusion, medical appointments , surgeries , medications , bills and even a 2013 flood (that left him with non healing wounds so far to date of 2 years) and a very broken house we can barely keep and none of that can compare to agony we felt wondering if he would pull though this last crises.
Please know his story is that of strength , faith , love , the will to live , concern for others and the desire to honor those that have died. The daily struggle to keep up is small in comparison to our son's inner strength and for that we know he is BRAVE.
I plan to wear my bracelet to remind me in the middle of the night when my mind listens to the rhythmic sound of the O2 concentrator that its ok to fall asleep because
we have to keep the faith that the sun rises on us all in the morning.
A cure is evolving new treatments are hopeful I will Be Brave for our family.
https://www.bravelets.com/
Thursday, November 26, 2015
Momma Fran: daily update, good morning sickle cell family
Good Morning Sickle Cell family
I hope this day is finding warm with less pain and a big appetite. If you happen to be in the hospital don't be discouraged.
It's still Thanksgiving because the care and treatment you need is happening.
Parents we've been there turning hospital rooms into holiday central.
People make the holiday not TV ads etc.
I hope this day is finding warm with less pain and a big appetite. If you happen to be in the hospital don't be discouraged.
It's still Thanksgiving because the care and treatment you need is happening.
Parents we've been there turning hospital rooms into holiday central.
People make the holiday not TV ads etc.
We even made our own holidays.
On the dates we wanted.
Couple years ago after our flood and when Marqus got back out the hospital
We a Valentines Day tree and presents!
Somehow this season can generate floods of emotion we are bombarded
By ads to spend buy shop
We are told we have to be happy or have
Plenty of things.
Personally I chose people over stuff
Some of my best "things " are those macaroni ornaments my kids made light years ago.
If your in the hospital and the pain is not too bad don't forget to use those little Med cups to make bells.
Marqus used to make tongue blade super heroes.
And he actually got into soap and shave cream one time while I wasn't there.
Oops kind of a mess
Don't forget to make the biggest paper chain you can and stretch it all the way across your room.
The tech savvy crowd can use face time.
And you can dance while laying in bed ...really try it It will work.
Ok so I have a question.
What brings you joy?
Have a blessed Thanksgiving
On whatever day you chose for it to be.
We are strong.
Love you all
-Momma Fran Valentine
On the dates we wanted.
Couple years ago after our flood and when Marqus got back out the hospital
We a Valentines Day tree and presents!
Somehow this season can generate floods of emotion we are bombarded
By ads to spend buy shop
We are told we have to be happy or have
Plenty of things.
Personally I chose people over stuff
Some of my best "things " are those macaroni ornaments my kids made light years ago.
If your in the hospital and the pain is not too bad don't forget to use those little Med cups to make bells.
Marqus used to make tongue blade super heroes.
And he actually got into soap and shave cream one time while I wasn't there.
Oops kind of a mess
Don't forget to make the biggest paper chain you can and stretch it all the way across your room.
The tech savvy crowd can use face time.
And you can dance while laying in bed ...really try it It will work.
Ok so I have a question.
What brings you joy?
Have a blessed Thanksgiving
On whatever day you chose for it to be.
We are strong.
Love you all
-Momma Fran Valentine
Wednesday, November 18, 2015
Mama Fran: daily update
Good Morning!!! It will be back to therapy riding this Saturday yeah.
The slice of heaven at Bravehearts.
Try to keep your chin up when the 3pm doctor appointment doesn't happen until 5 pm. The cardiac appointment went well heart lungs sounded great so it was worth the wait.
The slice of heaven at Bravehearts.
Try to keep your chin up when the 3pm doctor appointment doesn't happen until 5 pm. The cardiac appointment went well heart lungs sounded great so it was worth the wait.
Slowly and steadily returning to living.
Have an awesome day warriors.👍🏽☕🍓🍌🍲🍎 eat well drink water stay strong.
Have an awesome day warriors.👍🏽☕🍓🍌🍲🍎 eat well drink water stay strong.
Friday, November 13, 2015
Phot: PICC line is out!
PICC line out this week at Edward Cancer center. So Happy.
Peripherally inserted central catether
Peripherally inserted central catether
Sunday, November 8, 2015
More Cider and Sickle Cell success!!!
More Cider and Sickle Cell success!!! Yummy cake pop makers. Everyone's
efforts to bring Christina's vision for a fall fundraiser to happen in 3
weeks are a true testimony to team work and community.Thank You Family
Video! Thank you to all for planning , calling , cooking , donating ,
hopping a plane in an out in 24 hrs, taping , painting, store running ,
brain storming!!! Wow. GIANT Thank You to those that stopped listened
shared their story, had their faces painted, sipped some cider and
showed support. - Mama Fran Valentine
Thursday, October 29, 2015
Photo: Edward Cancer Center
Edward Cancer center and beautiful harp music.
Beautiful music to with the soul
Beautiful music to with the soul
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