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

Wednesday, May 15, 2013

Road Trip DESTINATION ABERDEEN SCOTLAND!!!!!! MORE TO COME ON THE STORY.



The clean up 10 days later


Rising Waters








MOTHER NATURE

Hello everyone,
First I am sorry for the delay in blogs . I am a graduate student , nurse , mom, and many other hats that keep me from getting the posts done.
Adding to our new title are natural disaster survivors.

NO ONE on our block died and thank GOD for that!
I want to talk about being prepared for the worst.

On 4-18-2013 we had the worst flood we've ever seen. The rapidly rising fast moving water was dangerous caught us off guard and any plan we thought we had failed.

Persons with health conditions are at the greatest rsik during disasters. Immobility , requiring   medcaitions , breathing difficulties and conditions realted to Sickle Cell Anemia WILL need special attention.
We assisted our new family with an expectant mother and little boy, we helped save cars, pets and then after sand bagging my husbadn helped the Fire Dept complete another rescue our other neighbor can not walk and the water was already 7-8 feet to their home. The fire men borrowed a paddle boat tethered lines and got him. My husband drove him in our garden cart with the tractor to safety.

After we helped our neighbors my BIG plan was to grab Marqus and a bag of supplies and go out our back door uphill to dry land , that did not happen!

After the boat rescue of my neighbor , we smelled gas Marqus was slummped in a chair slightly blue after he preared his small bag. OUR house is OXYGEN RICH  with a M60 tank and 3 concentrators.

My best freinds had just lost their entire home and they were now helping us , we all helped each other THE POWER OF THE HUMAN SPIRIT!!
NOW we had to throw together a suitcase of IVs , meds supplies for his central line and other essentials , I have ashtma  so that meant we needed the nebulizer etc etc,

ALL I could think of was EXPLOSION and get this O2 tank out of the house and up the hill.


I pushed the life line and the divers returned to us witha motor boat to get Marqus. We evacuated to Benedictine University where the Red Cross set up temporary shelter then a hotel.

We are lucky because we still have a roof over our head but the clean up and fianacial losses are great.
During clean up we all helped each other and fought off scavengers picking though our wet , fithy stuff on the curb , stealing and preying on our tradgey like vultures. IT WAS A SIGHT FOR SORE EYES!!!!  There was raw sewage on many things our basement was full of it and folks took that awful stuff not just metal.
10 days later the bulldozers and semis came to pick up the trash. The Smell was sick!
The Village communications broke down and THANK YOU to BOY SCOUT TROOP 108 and THE LISLE CARES FB page for  information and help.THANK YOU TO OUR FIRE DEPARTMENT ! for tying themselves to a paddle boat to rescue our neighbor and coming right back for Marqus and the rest of the people that were trapped.

TROOP 108  is a blessing they saw our needs and have helped ever since!!

Well I hope to post information that can help you in a disaster.
Despite our best plans Mother nature is unpredictible !

Go to The American Red Cross and FEMA web pages and check out the information it can save your life.

PERSONS WITH SPECIAL NEEDS  PLEASE PLAN AHEAD!

A always thank you for listening and I promise to try and update this more often.
LUV MOM
Francesca Valentine  RN BSN MSN Candidiate Benedictine University  , SCA parent






Friday, October 12, 2012

The Beach

Hello everyone ! It has been sometime between posts. I am in graduate school and work many many hours. But recently I had the time of my life. I took a vacation . I had the opportunity to spend time on the beach in the south of Spain.
I was in the Atlantic Ocean , wore a big floppy sun hat , drank fabulous cold drinks , coffee and watched Flamenco!!!! WOW the sand was hot and the water felt soft.
The buildings in Cadiz Spain were old and charming . We walked the streets stopping at places to eat and drink. The coffee was served in tiny cups with huge flavor . Tapas OH Tapas !!!! All over Spain the best Tapas was at Manolo's in San Fernando , a local place that was just down the street from the school where Ashley taught English last year.  Madrid , Cadiz , Seville , San Fernando oh Spain !!!
Me encanta Espana !!!!!!!!!!I love Spain.

Late nights and walking everywhere was amazing. I now have the travel bug and intend to return and bring the family.
Ashley has paved our way to the world by working and studying abroad . The international network has many branches.

11 days 3 climates , 3 countries and a really BIG suitcase!!

Plaza de Espana!!
After leaving Spain we flew to London ! We met Kevin my oldest son . He works for an international construction company and was on R&R to take a test in England.We were right in the middle of the Olympics and again WOW!!!!  Hats off to London ! The UK was amazing and we watched 1 live event !! The pubs were wonderful and Hyde Park was so crowded I couldn't stand in line anymore.  New tourist mistake new shoes LOL and the most painful feet in the world.
You are probably wondering what this has to do with Sick Cells ?
Ashley did her field research in London and I met one of the most amazing women. The director of a SCA program in London that reached out to Ashley and as a result our network now reaches across the pond.
Soon Marqus will travel to the Scotland for his sisters graduation from the University of Aberdeen.
Ashley will be receiving her Masters in Social Research.

I started at the beach and ended at the North sea in Scotland .
I am forever grateful to my kids for their hard work that has opened doors and
extended branches around the world.

Please follow our documentary. Social media and the world wide web connects us .
Luv Mom!


Rebajas!!!!!!!!!!!!! YES!!! 50% off

London taxi

Tower Bridge London!

Phone call anyone?

Flamenco!!!!!!!!!!!!!!!

Train station from London to Aberdeen Scotland!

A view from the train of a wonderful building on a pennisula in the ocean.

A building in Scotland by the University

The plaza in Cadiz Spain


Thursday, May 10, 2012

From Island to Village

Before the creation of Sick Cells, living and working daily with a chronic illness felt like being shipwrecked on a deserted island. Each time there was an episode of pain or a crisis, came the need for a short physiology lesson as to why Marqus was suffering.  


A person with a more familiar disease just has to give a one word title, and the message is received. Sickle Cell Anemia is still an Island. It stays alone in stereotypes and is still burdened with "Oh, I've heard of that, but I didn't know it did all that."  


The documentary is slowly but surely expanding our Village. The disease needs the help of the world! My daughter, Ashley, is doing her Master's thesis about Sickle Cell Disease, and is our international link.



Social isolation keeps you on that island. Please join our discussion and help us create the Village that needs to grow into a city and flow into the world. 


Release that hidden pain and suffering! Shout out! Use the Social Media links and comments and talk to us! 


We are spreading and with this mission there will no longer be castaways!!! 

Thank you for listening!

Luv,
Fran