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.

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.

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.

He never ceases to amaze me.
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.

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.

Oh I almost forgot NEVER EVER
Be shy about asking a health care person to wash their hands before touching you.

Love Mama Fran

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

Photo: Nothing keeps a warrior down!

Nothing keeps a warrior down. Not even leg wounds and no boots to fit! My hero. 

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

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/