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
Friday, December 25, 2015
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
Photo: Waiting for blood transfusion
Waiting for blood transfusion listening to beautiful harp music
Tuesday, October 27, 2015
Mama Fran: daily update!
Finally had a little fun this weekend !!! Yeah!!
Marqus had to scratch the Special Olympics because of the PICC line. But that's ok next time and he will be back in the saddle soon.
Marqus had to scratch the Special Olympics because of the PICC line. But that's ok next time and he will be back in the saddle soon.
Thursday, October 15, 2015
Well done Grey's Anatomy!
Well Done Grey's Anatomy tonight!!!
They had Sickle Cell episode well done. It addressed
The memories of past experiences and it addressed being accused of lying about the illness !!!
They had Sickle Cell episode well done. It addressed
The memories of past experiences and it addressed being accused of lying about the illness !!!
I posted on the Grey's anatomy page.
It reminded of when I was accused by a Masters and Doctorate prepared nurse that my son was not as sick as I claim and that I was lying!!
The old angry memories just flooded back. OMG!!!
It reminded of when I was accused by a Masters and Doctorate prepared nurse that my son was not as sick as I claim and that I was lying!!
The old angry memories just flooded back. OMG!!!
Saturday, October 10, 2015
Mama Fran: Thanks Kevin!
Thank you Kevin !! Lots of fun watching Kaleb ,Kevin and Marqus going
thru toys that are 25 + years old but still fun . Kevin's office
thousands of miles away.
Mama Fran: daily update
Good Morning !!! Thank you Lord for waking up today!!
There is a special group of folks that are sometimes left in the shadows . The brothers and sisters of persons with SCA.
I remember when my oldest son Kevin was a little boy and the hospital we used at the time had a group for all the brothers and sisters of kids with cancer . He asked why there was not a group for him and his brother was really sick too.
Remember you are as important as your sibling try not to be frustrated if plans are cancelled for a crises or money is tight because your parents missed work due to your family members illness.
Once when my oldest was really little he asked if we would love him better when he got Sickle Cell
The whole family is affected when one member is down. Hang in their as a team.
That same little boy now all grown up realizes the tough journey his brother has he now takes care of his own family by working in a war zone daily in Afghanistan. His struggle as a child watching a sick brother and wondering sometime if he would die made him stronger.
There were time when he would try and make his brother "normal" like take to a party in the middle of winter his coat gets stolen and his brother was as cold as ice!
They look back on stuff like that and now know how dumb that was. But they also remember when my oldest found little tiny football pads to cover his brothers chest after his first Port a Cath at 3 yrs old . He wanted his brother to play outside .
The oldest remembers more bad stuff the youngest remembers how much fun they had at the children's hospital play room. We used a different hospital that included brothers and sisters all the time.
The youngest completed her graduate work researching the Social disparities of SCA and now is seeking a research position in the field of SCA.
She just rearranged her life to get planes home to help with this last critical episode.
Their work ethic is strong due to keeping the family going despite struggle.
They would walks the hospital floors with me finish their homework and go to school the next day.
There experiences while different has one similarity
What doesn't kill you makes you stronger .
Struggle can build character and give you drive to keep going.
Brothers and sisters you are very special
Be sure to talk about how you feel when your family member is sick .
Remind your family that watching the pain and suffering can be scary , sad and make you feel
Worried.
Ask how you can help. Ask for explanation learn about SCA and when the time comes you will be an advocate for your family member or dear friends. You may need to tell their story by sharing your own.
My grandson said " Grandma what's wrong with Uncle
Marqus "? When he was in the ICU. I explained that the sickle cells were blocking his blood vessels giving him pain. My grandson in a very strong matter of fact why says " Then they just need to get rid of those Sickle Cells"
Seeing things thru the eyes of babes is matter of fact , to the point.
The time is now !! And I believe we will be getting rid of these Sickle Cells!! Tell your stories
We love you brothers ,sisters , families , friends
Together you are the glue that keeps the person with SCA going !!!
Chronic illness can be lonely and the hospital staff can be your second family . It's ok to need help sometimes. Marqus always remembers to say thank you.
Dear Kevin and Ashley ,
Your dad and I love you and say thank you.
There is a special group of folks that are sometimes left in the shadows . The brothers and sisters of persons with SCA.
I remember when my oldest son Kevin was a little boy and the hospital we used at the time had a group for all the brothers and sisters of kids with cancer . He asked why there was not a group for him and his brother was really sick too.
Remember you are as important as your sibling try not to be frustrated if plans are cancelled for a crises or money is tight because your parents missed work due to your family members illness.
Once when my oldest was really little he asked if we would love him better when he got Sickle Cell
The whole family is affected when one member is down. Hang in their as a team.
That same little boy now all grown up realizes the tough journey his brother has he now takes care of his own family by working in a war zone daily in Afghanistan. His struggle as a child watching a sick brother and wondering sometime if he would die made him stronger.
There were time when he would try and make his brother "normal" like take to a party in the middle of winter his coat gets stolen and his brother was as cold as ice!
They look back on stuff like that and now know how dumb that was. But they also remember when my oldest found little tiny football pads to cover his brothers chest after his first Port a Cath at 3 yrs old . He wanted his brother to play outside .
The oldest remembers more bad stuff the youngest remembers how much fun they had at the children's hospital play room. We used a different hospital that included brothers and sisters all the time.
The youngest completed her graduate work researching the Social disparities of SCA and now is seeking a research position in the field of SCA.
She just rearranged her life to get planes home to help with this last critical episode.
Their work ethic is strong due to keeping the family going despite struggle.
They would walks the hospital floors with me finish their homework and go to school the next day.
There experiences while different has one similarity
What doesn't kill you makes you stronger .
Struggle can build character and give you drive to keep going.
Brothers and sisters you are very special
Be sure to talk about how you feel when your family member is sick .
Remind your family that watching the pain and suffering can be scary , sad and make you feel
Worried.
Ask how you can help. Ask for explanation learn about SCA and when the time comes you will be an advocate for your family member or dear friends. You may need to tell their story by sharing your own.
My grandson said " Grandma what's wrong with Uncle
Marqus "? When he was in the ICU. I explained that the sickle cells were blocking his blood vessels giving him pain. My grandson in a very strong matter of fact why says " Then they just need to get rid of those Sickle Cells"
Seeing things thru the eyes of babes is matter of fact , to the point.
The time is now !! And I believe we will be getting rid of these Sickle Cells!! Tell your stories
We love you brothers ,sisters , families , friends
Together you are the glue that keeps the person with SCA going !!!
Chronic illness can be lonely and the hospital staff can be your second family . It's ok to need help sometimes. Marqus always remembers to say thank you.
Dear Kevin and Ashley ,
Your dad and I love you and say thank you.
Friday, October 9, 2015
Share Your Story!
You are strong!! I can't explain why sometimes it seems that God doesn't know our pain. Please know
You are strong and keep sharing your story. If there is something you like to do you can. Drink lots of water no soda eat as many fruits and vegetables as you can.
Take your medicine. Always remind folks to wash their hands and not spread their germs. It's ok to rest when everyone else is running around use that time to play your favourite game. Be sure to tell your mom if you feel sick or if anyone gives you a hard time when you ask for help. You are a warrior a hero!!!
Sending you our strength and a big hug from Marqus' mom. Mama Fran!!!
Saturday, October 3, 2015
Sunday, September 27, 2015
Saturday, September 26, 2015
Momma Fran: daily update 9/26/2015
Well the verdict is in.
The wound infection will result in him losing his port a Cath. They will be doing a MRI to look for Osteomyelitis. (Bone infection). Any infection can travel into the blood it will then seed itself on any implantable device like the port.
Our skin is our first line of protection against infection!
Break down that fence and the germs march on in !
The wound infection will result in him losing his port a Cath. They will be doing a MRI to look for Osteomyelitis. (Bone infection). Any infection can travel into the blood it will then seed itself on any implantable device like the port.
Our skin is our first line of protection against infection!
Break down that fence and the germs march on in !
Glad our health care team is on top of this and that
We don't have to wait for a "technical" 101 fever to check those blood cultures!!!
Also the puppies nose knows!
Ok let the healing begin.
We don't have to wait for a "technical" 101 fever to check those blood cultures!!!
Also the puppies nose knows!
Ok let the healing begin.
Momma Fran: daily update 9/26/2015
Good Morning everyone!!
Marqus has been re admitted to the hospital.
His wounds are the biggest reason for these repeated episodes. This time the good news is getting blood cultures early for his temp 99 to 100 made the difference!!
Marqus has been re admitted to the hospital.
His wounds are the biggest reason for these repeated episodes. This time the good news is getting blood cultures early for his temp 99 to 100 made the difference!!
He had chills after the wound debridement.
Also hindsight is 20/20 when his blood count drops and doesn't recover we have trouble.
What is amazing is how his service dog in training
Stays right with him Chewy will sniff him head to toe
If something is different.
This is the 3rd time he has done this and then we noticed the wound change and a crises.
Smells were not apparent to our noses and I'm the queen of smell.
This time we listened went straight into the doctor . The wound was taken care of and then off to get labs , blood and the push for blood cultures.
It worked !! He was admitted BEFORE he crashed!!!
He has never had back to back sepsis . I was terrified.
Even if a new type of bandage is placed or he is using a new device they know it's different. They also do not sleep unless he does.
They knew he was sick followed me around to get him ready and it was as if they lined up to get their collars on to go to doggy school.
Service dog training is a wonderful journey and it's worth it no matter how much time or cost!!!
I think Chewy can come to the hospital now I have to check that out.
Thousands of hours these pups teach me something everyday.
It's funny they know our very old Happy dog is senile and rickety they are very gentle with him. Lol.
I told Marqus to keep his spirits UP we are going to get this under control!!!
LOL now all I need is a body double one if me to care for Marqus and another to do an extreme house make over.
Oh yeah and one more to go to work and try not to go completely broke.
Thank goodness a call for my husband came in.
We are getting kinda of old to be working 7 12 hr shifts but bills don't pay themselves and we have to keep pushing.
Thanks for everyone's prayers we need them!!!
Fran
Also hindsight is 20/20 when his blood count drops and doesn't recover we have trouble.
What is amazing is how his service dog in training
Stays right with him Chewy will sniff him head to toe
If something is different.
This is the 3rd time he has done this and then we noticed the wound change and a crises.
Smells were not apparent to our noses and I'm the queen of smell.
This time we listened went straight into the doctor . The wound was taken care of and then off to get labs , blood and the push for blood cultures.
It worked !! He was admitted BEFORE he crashed!!!
He has never had back to back sepsis . I was terrified.
Even if a new type of bandage is placed or he is using a new device they know it's different. They also do not sleep unless he does.
They knew he was sick followed me around to get him ready and it was as if they lined up to get their collars on to go to doggy school.
Service dog training is a wonderful journey and it's worth it no matter how much time or cost!!!
I think Chewy can come to the hospital now I have to check that out.
Thousands of hours these pups teach me something everyday.
It's funny they know our very old Happy dog is senile and rickety they are very gentle with him. Lol.
I told Marqus to keep his spirits UP we are going to get this under control!!!
LOL now all I need is a body double one if me to care for Marqus and another to do an extreme house make over.
Oh yeah and one more to go to work and try not to go completely broke.
Thank goodness a call for my husband came in.
We are getting kinda of old to be working 7 12 hr shifts but bills don't pay themselves and we have to keep pushing.
Thanks for everyone's prayers we need them!!!
Fran
Saturday, August 29, 2015
Advocacy Day in Chicago
Greetings,
Attached and below is the announcement of our Advocacy Day in Chicago at the James R. Thompson Center. Please feel free to share and post on social media. We need your support, we need a good turn out to be effective!! Please make every effort to participate.
Attached and below is the announcement of our Advocacy Day in Chicago at the James R. Thompson Center. Please feel free to share and post on social media. We need your support, we need a good turn out to be effective!! Please make every effort to participate.
Blessings,
Bonnye
Bonnye Johnson MS. RN
312.996.5267
"When you want to be bitter, Choose to be better"
In a message dated 8/25/2015 8:04:58 P.M. Central Daylight Time, Bonnye9@aol.com writes:
Greetings,
Although UI Health Sickle Cell Center was put back in the State budget by our Legislators, Gov. Rauner vetoed the budget and his proposed budget still eliminates funding to the Sickle Cell Center.
We won a battle, not the war!
The Patient Council has scheduled two dates next month, National Sickle Cell Awareness Month, to demonstrate at the State of Illinois Building (known as the James Thompson Center) downtown Chicago and make some noise putting pressure on the governor. Issues are and remain:
Restore Sickle Cell Funding and then pass the budget!!!
Support HR0255 that urges Department of Healthcare & Family Services to waive the 30-Day Readmission rule for those with SCD!
We will meet Thursday, August 27, 2015 6p-8p to plan and strategize. There must be a large show of supporters if we want to make an impression as we did in Springfield in May. So please make every effort to attend.
Location: 840 S. Wood Street, Suite 172
time: 6p-8p
Conference Call in will be available:
dial in: 1-712-432.3100
Code: 710126
In the meantime, calls can be made and messages sent to the Governor's office:
Gov. Rauner can be reached at:
https://www.illinois.gov/…/contac…/Pages/VoiceAnOpinion.aspx
Springfield Chicago
Office of the Governor Office of the Governor
207 State House James Thompson Center
Springfield, IL 62706 100 W. Randolph, 16-100
Phone: 217-782-0244 Chicago, IL 60601
Phone: 312-814-2121
Illinois Legislators can be reached at:
http://www.ilga.gov/
http://www.ilga.gov/house/
http://ilcommunityschools.org/…/Advocacy%20-%20How%20to%20c…
http://www.house.gov/representatives/find/
Remember the "Squeaky Wheel get's the Grease"
Hope to see you Thursday.
Blessings,
Bonnye
Bonnye Johnson
312.996.5267
"When you want to be bitter, Choose to be better"
http://www.house.gov/representatives/find/
Bonnye
Bonnye Johnson MS. RN
312.996.5267
"When you want to be bitter, Choose to be better"
In a message dated 8/25/2015 8:04:58 P.M. Central Daylight Time, Bonnye9@aol.com writes:
Greetings,
Although UI Health Sickle Cell Center was put back in the State budget by our Legislators, Gov. Rauner vetoed the budget and his proposed budget still eliminates funding to the Sickle Cell Center.
We won a battle, not the war!
The Patient Council has scheduled two dates next month, National Sickle Cell Awareness Month, to demonstrate at the State of Illinois Building (known as the James Thompson Center) downtown Chicago and make some noise putting pressure on the governor. Issues are and remain:
Restore Sickle Cell Funding and then pass the budget!!!
Support HR0255 that urges Department of Healthcare & Family Services to waive the 30-Day Readmission rule for those with SCD!
We will meet Thursday, August 27, 2015 6p-8p to plan and strategize. There must be a large show of supporters if we want to make an impression as we did in Springfield in May. So please make every effort to attend.
Location: 840 S. Wood Street, Suite 172
time: 6p-8p
Conference Call in will be available:
dial in: 1-712-432.3100
Code: 710126
In the meantime, calls can be made and messages sent to the Governor's office:
Gov. Rauner can be reached at:
https://www.illinois.gov/…/contac…/Pages/VoiceAnOpinion.aspx
Springfield Chicago
Office of the Governor Office of the Governor
207 State House James Thompson Center
Springfield, IL 62706 100 W. Randolph, 16-100
Phone: 217-782-0244 Chicago, IL 60601
Phone: 312-814-2121
Illinois Legislators can be reached at:
http://www.ilga.gov/
http://www.ilga.gov/house/
http://ilcommunityschools.org/…/Advocacy%20-%20How%20to%20c…
http://www.house.gov/representatives/find/
Remember the "Squeaky Wheel get's the Grease"
Hope to see you Thursday.
Blessings,
Bonnye
Bonnye Johnson
312.996.5267
"When you want to be bitter, Choose to be better"
http://www.house.gov/representatives/find/
Thursday, August 6, 2015
Momma Fran: daily update; we're close to coming home
Hello Everyone
We are closer to coming home. Marqus has an amazing spirit it is not easily shattered.
Everyday we step out on faith .
In order to understand this post I have to share a story.
Many years ago when Marqus was small and we went to Loyola Kevin would go in the playroom and occupy himself while we attended to Marqus .
We were so grateful for the volunteer grandmas that helped.
The kids whose siblings had cancer were invited to a group to discuss their feelings
No such group existed for siblings of kids with Sickle Cell. Kevin asked why they didn't include him just like Kevin's son asked why cant they take away Uncle Marqus Sickle Cells.
Even though Kevin was young he felt the pain and sadness and tried in his young mind to understand why his little brother hurt so much why his little brother was on a ventilator why we had to cancel birthdays or miss great America. As a small child Kevin asked me would we love him better when he gets Sickle Cell.
Having a family member suffer takes it toll on everyone but they must understand it is not their fault and they have to have the strength to fight the good fight.
Marqus at five years old told me its was not my fault for his illness or dads fault or Gods fault or anybody's fault. He just told me not to cry and he would be ok.
You see that's why we feel the pain but have to take care of ourselves we have more fight and the book not at the end.
Any chronic life threatening illness has an effect on the entire family unit.
We may seem tougher than most but
We believe what doesn't kill us makes us strong and God gave us what we can handle for a reason.
We have worked together for Marqus ' entire life Sharing so many responsibilities.
Our fortitude taught our kids to persevere.
Marqus desire to be in this world despite horrific pain a brutal war inside that renders many organs dead he has kind words .
The reality that all we really have is time no matter who we are hits home and
Finds itself bringing us to tears intermittently with memories of joy
On top of our minds racing wondering
What life can be without our family unit.
We are blessed to be a family unit I don't care how broken down our house is I don't care what laundry is not folded
We pay the bills but call and try to Harass
Me for something I can't pay now not worried. As long as we are breathing all will be done.
Watching the level of suffering for someone you love does leaves scars ptsd nightmares call it what you want it is a normal reaction.
When Marqus was about 6.5 yrs old he was on a ventilator after breathing 78 breaths per minute and having his first episode of acute chest.
I didn't sleep for months I left the SICU because I couldn't tolerate the sounds of the ventilator.
Feeling anxious is ok it's real it's emotion.
We are just used to not wanting to spread our burden on others because they may be carrying their own crosses that day
We have to remember our joy remember what makes us smile at the end of the day.
Hey husband has this amazing ability to make us laugh. Our pets are comforting
They are keenly aware of our emotions
Family is our circle that cares the outpouring of support means so much to us.
Marqus hs his 3rd birthday with a NG tube in his nose , he just got a new paediatric port a cath and I found a blow up cake. His guest at the Loyola playroom party were nurse med students his brother and anyone who wanted to join us. His 32nd birthday was in the family room at Edward hospital with lots of friend and. family no NG tube
A beautifully working port a cath and breathing well
The cup is more than half full he had a 32 nd birthday.
So emotions are our soul worry about folks who have none.
They are symbols of our passions and zest for life
Be sure to reach out we don't do that often sometimes we are silent sufferers
So as not to burden others.
At the end of the day all we have is time
Please don't miss the sunshine , a real smile not an emoji , ride a horse , pet a dog cat , laugh, give a hug , make a list , say sorry in person with your voice , look up from your phone. Don't miss your persons that make up your world.
This may be the most I've written in this site in a long time thank you for following
We forgot to reach out and just barrel forward trying to complete all the life tasks and somewhere in between live.
I think this is a reminder to live the life tasks will still be there even when we are not.
One day at a time
One tasks at a time
Marqus says slow and steady wins the race.
We are closer to coming home. Marqus has an amazing spirit it is not easily shattered.
Everyday we step out on faith .
In order to understand this post I have to share a story.
Many years ago when Marqus was small and we went to Loyola Kevin would go in the playroom and occupy himself while we attended to Marqus .
We were so grateful for the volunteer grandmas that helped.
The kids whose siblings had cancer were invited to a group to discuss their feelings
No such group existed for siblings of kids with Sickle Cell. Kevin asked why they didn't include him just like Kevin's son asked why cant they take away Uncle Marqus Sickle Cells.
Even though Kevin was young he felt the pain and sadness and tried in his young mind to understand why his little brother hurt so much why his little brother was on a ventilator why we had to cancel birthdays or miss great America. As a small child Kevin asked me would we love him better when he gets Sickle Cell.
Having a family member suffer takes it toll on everyone but they must understand it is not their fault and they have to have the strength to fight the good fight.
Marqus at five years old told me its was not my fault for his illness or dads fault or Gods fault or anybody's fault. He just told me not to cry and he would be ok.
You see that's why we feel the pain but have to take care of ourselves we have more fight and the book not at the end.
Any chronic life threatening illness has an effect on the entire family unit.
We may seem tougher than most but
We believe what doesn't kill us makes us strong and God gave us what we can handle for a reason.
We have worked together for Marqus ' entire life Sharing so many responsibilities.
Our fortitude taught our kids to persevere.
Marqus desire to be in this world despite horrific pain a brutal war inside that renders many organs dead he has kind words .
The reality that all we really have is time no matter who we are hits home and
Finds itself bringing us to tears intermittently with memories of joy
On top of our minds racing wondering
What life can be without our family unit.
We are blessed to be a family unit I don't care how broken down our house is I don't care what laundry is not folded
We pay the bills but call and try to Harass
Me for something I can't pay now not worried. As long as we are breathing all will be done.
Watching the level of suffering for someone you love does leaves scars ptsd nightmares call it what you want it is a normal reaction.
When Marqus was about 6.5 yrs old he was on a ventilator after breathing 78 breaths per minute and having his first episode of acute chest.
I didn't sleep for months I left the SICU because I couldn't tolerate the sounds of the ventilator.
Feeling anxious is ok it's real it's emotion.
We are just used to not wanting to spread our burden on others because they may be carrying their own crosses that day
We have to remember our joy remember what makes us smile at the end of the day.
Hey husband has this amazing ability to make us laugh. Our pets are comforting
They are keenly aware of our emotions
Family is our circle that cares the outpouring of support means so much to us.
Marqus hs his 3rd birthday with a NG tube in his nose , he just got a new paediatric port a cath and I found a blow up cake. His guest at the Loyola playroom party were nurse med students his brother and anyone who wanted to join us. His 32nd birthday was in the family room at Edward hospital with lots of friend and. family no NG tube
A beautifully working port a cath and breathing well
The cup is more than half full he had a 32 nd birthday.
So emotions are our soul worry about folks who have none.
They are symbols of our passions and zest for life
Be sure to reach out we don't do that often sometimes we are silent sufferers
So as not to burden others.
At the end of the day all we have is time
Please don't miss the sunshine , a real smile not an emoji , ride a horse , pet a dog cat , laugh, give a hug , make a list , say sorry in person with your voice , look up from your phone. Don't miss your persons that make up your world.
This may be the most I've written in this site in a long time thank you for following
We forgot to reach out and just barrel forward trying to complete all the life tasks and somewhere in between live.
I think this is a reminder to live the life tasks will still be there even when we are not.
One day at a time
One tasks at a time
Marqus says slow and steady wins the race.
Tuesday, August 4, 2015
Momma Fran: Speak up your life and Health depend on it!!
Marqus had to advocate today for himself. He was assumed to be drug
seeking because the anatomy and physiology of osteonecrosis was
overlooked. Years ago one of my nursing instructors told us to NEVER
assume!! There is no place in our line of work for this mentality. Ill
placed judgements and Assumptions can be deadly. The pt should not have
to fear their care will be affected by what the nurse thinks of them.
Like it or not patient character judgements Do affect the quality
of care. His sister was on the phone thank goodness. I was getting in
my car. This day brought him to tears he's battle weary BUT not broken.
He composed his self and spoke his mind. I composed myself calmed my
rage after almost losing him 2 weeks ago and said Marqus dial Zero on
your hospital phone and call the head nurse. His sister was on the phone
from DC. The last time this happened was many years ago a nurse sat by
his bed and told him "you won't be getting anymore pain meds on my
shift". Wow here we go again folks like this make it harder for the
professionals to actually do their jobs. Osteonecrosis is painful causes
bone edema and inflammation. Like Marqus said Do you honestly think I
wanted to spend my 32nd birthday in the hospital????By the way Marqus
walked on a dead knee for 4 years while we fought for an allograft. He
pushed his knee cap back in place!!! Let me review. Events from 7/12
forward. Massive sickle crises. Acute chest. Fever. Sepsis. ICU. BiPAP.
Neb treatment with PEEP. Blood cultures MRI. WBC Scan fentanyl PCA. 5
units of blood 7-8 specialists Numerous Excellent nurses multiple
tests etc. and the question of drug seeking REALLY? This aggravates me
as much as the time I was accused of Munchausens Syndrome by Proxy!!!!
The good does outweigh the bad BUT all it takes is one assumption to
miss the critical symptoms that can possibly lead to a persons death.
When he was small he would not say a word until I got to the hospital.
If he felt no one cared he was silent. Don't do that!!! Speak up your
life and Health depend on it !!!!!
Wednesday, July 29, 2015
Momma Fran: daily update
Hello Everyone !
Marqus is still hanging in there. He is on the medical floor trying to walk with PT daily . Bone Necrosis is painful and his hip and lower back are very painful.
Good news his sister is working her magic in his room . Often folks don't realize all the changes that are need when a persons mobility is affected by injury or illness.
Dead bone depending on location is fragile painful and can be debilitating.
Marqus is still hanging in there. He is on the medical floor trying to walk with PT daily . Bone Necrosis is painful and his hip and lower back are very painful.
Good news his sister is working her magic in his room . Often folks don't realize all the changes that are need when a persons mobility is affected by injury or illness.
Dead bone depending on location is fragile painful and can be debilitating.
Good news is they let us bring the pups to the healing garden area to see him!!!
Chewy wanted to jump in his lap Trinity was wagging her body.
I'm sure if they could have gotten their 90+ pound bodies in the wheelchair with him they would have.
New mission to prove medical need for Marqus to keep the topical Oxygen therapy boot. This device healed his skin in 6 weeks . The horrible pain was reduced in the ankles. The right ankle doesn't even hurt anymore.
Just like when he needed knee surgery we may have to fight .
Sickle Cell has for many years borrowed treatments from other illness and hope they work. Certain therapies readily used for other conditions per the insurance can possibly be experimental
for Sickle Cell persons.
Sickle Cell has generated over 1 Billion dollars in health care costs to me that says better care, more research and more recognition for the illness is needed. Please keep following I will try my best to keep up with posts.
More pup pictures to follow.!!!! Thank you!!!
Chewy wanted to jump in his lap Trinity was wagging her body.
I'm sure if they could have gotten their 90+ pound bodies in the wheelchair with him they would have.
New mission to prove medical need for Marqus to keep the topical Oxygen therapy boot. This device healed his skin in 6 weeks . The horrible pain was reduced in the ankles. The right ankle doesn't even hurt anymore.
Just like when he needed knee surgery we may have to fight .
Sickle Cell has for many years borrowed treatments from other illness and hope they work. Certain therapies readily used for other conditions per the insurance can possibly be experimental
for Sickle Cell persons.
Sickle Cell has generated over 1 Billion dollars in health care costs to me that says better care, more research and more recognition for the illness is needed. Please keep following I will try my best to keep up with posts.
More pup pictures to follow.!!!! Thank you!!!
Tuesday, July 28, 2015
News: He's Very Protective
Very informative. Our trainer is excellent at educating us on dog signals and behaviour. Thank you Lisa. Consumate Canine Inc
https://paws4udogs.wordpress.com/2013/01/07/hes-very-protective/
https://paws4udogs.wordpress.com/2013/01/07/hes-very-protective/
Sunday, July 26, 2015
Marqus turns 32!
Marqus turned 32 yrs old. Thank you GOD!!!
The last time we had a hospital family party was 29 years ago when he was 3!
This time he was able to eat the cake!!!
We are so grateful!!!
Thank you for coming out to the hospital. He was truly surprised!!!
The last time we had a hospital family party was 29 years ago when he was 3!
This time he was able to eat the cake!!!
We are so grateful!!!
Thank you for coming out to the hospital. He was truly surprised!!!
Thursday, July 23, 2015
Momma Fran: daily update 7/23/2015
My daughter flew in a couple of days ago. She was able to cancel her vacation when her brother went into crisis
I'm so glad she's here.
She makes us remember to eat lots of vegetables and take care of ourselves
She reminds us that we are no good to anyone if we fall apart. She tells her dad eat less sugar ! And reminds me to walk more and stretch.
My husband complains but eats when she cooks even if he hates onions !
I'm so glad she's here.
She makes us remember to eat lots of vegetables and take care of ourselves
She reminds us that we are no good to anyone if we fall apart. She tells her dad eat less sugar ! And reminds me to walk more and stretch.
My husband complains but eats when she cooks even if he hates onions !
She even came up with a Broadway musical song for Marqus to make him laugh his way thru the deep breathing and coughing.
Her friends from DC sent make the most beautiful flowers. Makes the room feel sunny!!
Thank you so much
I know it was hard to be so far away
On vacation and hear that Marqus had went into one of the worst crisis ever.
He keep saying stay on your vacation but she come hear him and all the ICU background noise and there was no way she wasn't coming home.
His older brother was home for 5 days too.
He works outside the USA so it was good everyone was here.
All Ashley's homemade food will help him heal faster.
Also her jokes and funny songs.
She has that quality from her dad.
Marqus aunts friends and cousins came by he was very happy.
I'm pretty stressed out and beat down so
I am so grateful for family and friends.
Good night everyone. I will keep updates coming.
He is in room 422 Edwards Hospital
Naperville
Her friends from DC sent make the most beautiful flowers. Makes the room feel sunny!!
Thank you so much
I know it was hard to be so far away
On vacation and hear that Marqus had went into one of the worst crisis ever.
He keep saying stay on your vacation but she come hear him and all the ICU background noise and there was no way she wasn't coming home.
His older brother was home for 5 days too.
He works outside the USA so it was good everyone was here.
All Ashley's homemade food will help him heal faster.
Also her jokes and funny songs.
She has that quality from her dad.
Marqus aunts friends and cousins came by he was very happy.
I'm pretty stressed out and beat down so
I am so grateful for family and friends.
Good night everyone. I will keep updates coming.
He is in room 422 Edwards Hospital
Naperville
Video: Trinity & Kaleb
Trinity giving Kaleb Marqus nephew a body wag. Lol!!
https://www.facebook.com/sickcells/videos/10155911098210171/
https://www.facebook.com/sickcells/videos/10155911098210171/
Momma Fran: Marqus is out of the ICU
Hello family and friends
Marqus is now on out of ICU!!
He is still in pain but it's more manageable.
His left hip is painful from the AVN
avascular necrosis.
Marqus is now on out of ICU!!
He is still in pain but it's more manageable.
His left hip is painful from the AVN
avascular necrosis.
Saturday July 25th is his birthday he will be 32 years old.
Often when we discuss a person we think of their accomplishments such as home ,job ,degrees etc.
Marqus has spent 31 yrs living with A disease that heightens the thoughts of a person's mortality.
I remember once when the kids were small and I had just completed a complicated ER shift they told me I didn't smile anymore.
My kids now adults shared their stories of taking turns to stay awake when I worked the night shift to make sure I came home.
To this day Marqus will care for himself
Even sometimes in distress so as not to wake me. He doesn't want my asthma to flare up.
My son with a condition whose pain and
Damage to the organs is unthinkable is always concerned for others.
We tackle this disease head on
This time I'm reaching out for support
We never complain and just keep going and going so much so that sometimes we forget people do care .
Somewhere in the midst of working to stay alive we fit in living.
Our IV pole makes and excellent clothes rack to dry hand washables.
The medications and supplies have grown quite a bit so I made a spread sheet. We have more medical supplies than furniture that cup is more than half full !!! We are blessed that Marqus has access to quality care.
The hyperbaric boot and concentrator sound like a ventilator pretty good sound effects to play video games to !
And the scooter will be excellent for running the dogs LOL my husband was driving it up and down the street and I do admit it looked awfully funny. No more missed the arboretum , national mall , comic con etc for difficulty walking.
Everyone please know that your support is appreciated !!
Chronic illness can render anyone lonely
Because they are not out and about doing daily things.
The hospital becomes like family and
Medical care to stay alive is top priority.
Health can not be taken for granted
If nothing else is learned from Marqus suffering please be good to your body ,mind and soul .Be sure to stop and relish the small things.
Often I'm bogged down by what I can't
Change its too much and can suck the joy right from my soul. That can not happen. I'm working on staying positive
Even in the face of catastrophe .
My grandson asked me why his Uncle Marqus was so sick
I explained about the sickle cells blocking all of his blood vessels stopping circulation.
He answered in the most matter of fact way.
"Grandma tell them to just take the cells away"
One day that will be the case.
Often when we discuss a person we think of their accomplishments such as home ,job ,degrees etc.
Marqus has spent 31 yrs living with A disease that heightens the thoughts of a person's mortality.
I remember once when the kids were small and I had just completed a complicated ER shift they told me I didn't smile anymore.
My kids now adults shared their stories of taking turns to stay awake when I worked the night shift to make sure I came home.
To this day Marqus will care for himself
Even sometimes in distress so as not to wake me. He doesn't want my asthma to flare up.
My son with a condition whose pain and
Damage to the organs is unthinkable is always concerned for others.
We tackle this disease head on
This time I'm reaching out for support
We never complain and just keep going and going so much so that sometimes we forget people do care .
Somewhere in the midst of working to stay alive we fit in living.
Our IV pole makes and excellent clothes rack to dry hand washables.
The medications and supplies have grown quite a bit so I made a spread sheet. We have more medical supplies than furniture that cup is more than half full !!! We are blessed that Marqus has access to quality care.
The hyperbaric boot and concentrator sound like a ventilator pretty good sound effects to play video games to !
And the scooter will be excellent for running the dogs LOL my husband was driving it up and down the street and I do admit it looked awfully funny. No more missed the arboretum , national mall , comic con etc for difficulty walking.
Everyone please know that your support is appreciated !!
Chronic illness can render anyone lonely
Because they are not out and about doing daily things.
The hospital becomes like family and
Medical care to stay alive is top priority.
Health can not be taken for granted
If nothing else is learned from Marqus suffering please be good to your body ,mind and soul .Be sure to stop and relish the small things.
Often I'm bogged down by what I can't
Change its too much and can suck the joy right from my soul. That can not happen. I'm working on staying positive
Even in the face of catastrophe .
My grandson asked me why his Uncle Marqus was so sick
I explained about the sickle cells blocking all of his blood vessels stopping circulation.
He answered in the most matter of fact way.
"Grandma tell them to just take the cells away"
One day that will be the case.
Monday, July 20, 2015
Momma Fran: Hello Monday
Hello Monday update
He is now in a regular room on telemetry
He used a walker and walked a small distance with protected weight bearing
Last nights transfusions helped a lot.
Now looking towards planning for home
Thank you everyone and please keep following.
He is now in a regular room on telemetry
He used a walker and walked a small distance with protected weight bearing
Last nights transfusions helped a lot.
Now looking towards planning for home
Thank you everyone and please keep following.
Photo: Onyx is waiting for Marqus
Onyx is waiting for Marqus to get better and bring the cookies carrots
apples and any other goodie she can find in his pocket!!!!!!!!
Sunday, July 19, 2015
Momma Fran: daily update 7/19/2015
Hello
Better day today !!! He will get another transfusion. Fevers are improving
Still in ICU but less pain.
Thank you God Thank you to everyone for prayers well wishes love and concern.
Better day today !!! He will get another transfusion. Fevers are improving
Still in ICU but less pain.
Thank you God Thank you to everyone for prayers well wishes love and concern.
Waiting for official results of WBC scan.
Will continue daily updates
Please get some sunshine today!
Will continue daily updates
Please get some sunshine today!
Friday, July 17, 2015
Momma Fran: keep following the daily updates
Please keep following thank you so much
This is his dream and we want this film to finally be done . He is a Hero for allowing
His very personal often painful journey to viewed by all to help others.
Our gratitude to the team keeping his
Terrible pain at bay, helping breath, watching him from head to toe.
This is his dream and we want this film to finally be done . He is a Hero for allowing
His very personal often painful journey to viewed by all to help others.
Our gratitude to the team keeping his
Terrible pain at bay, helping breath, watching him from head to toe.
Please also follow an awesome place
Www.braveheartsriding.org
Support them as they Help persons with special needs and our Veterans !
The folks their wonderful!
True blessings Marqus can let go of the many years of pain the pain with each foot step when riding a horse .
Onyx is 15 + this year and she carries Marqus his Oxygen , IV pump in the bag ,
She doesn't care if he has a cane saddle or no saddle she just does her job !
Peaches at Bravehearts gave Marqus a chance to ride western for the first time!!
It is awesome !
Please stay safe in the high heat and humidity !!!
Remember you may not feel thirsty BUT the body still needs water !!
Prevent heat stroke!!
Good night
Www.braveheartsriding.org
Support them as they Help persons with special needs and our Veterans !
The folks their wonderful!
True blessings Marqus can let go of the many years of pain the pain with each foot step when riding a horse .
Onyx is 15 + this year and she carries Marqus his Oxygen , IV pump in the bag ,
She doesn't care if he has a cane saddle or no saddle she just does her job !
Peaches at Bravehearts gave Marqus a chance to ride western for the first time!!
It is awesome !
Please stay safe in the high heat and humidity !!!
Remember you may not feel thirsty BUT the body still needs water !!
Prevent heat stroke!!
Good night
Momma Fran: Daily update
Hello everyone the daily update is a bit late . Marqus is hanging in
there. New test in the am it is called a WBC test or white blood cell
test to look for osteomyelitis in the left hip.
That is a bone infection. We are still working to control the pain. As the sepsis improves (blood infection) the crises will subside . He is still in the ICU.
We are keeping his spirits up and I keep sharing all the posts with prayers and with funny and beautiful posts.
Please continue to follow share and encourage it's helping and we thank everyone.
That is a bone infection. We are still working to control the pain. As the sepsis improves (blood infection) the crises will subside . He is still in the ICU.
We are keeping his spirits up and I keep sharing all the posts with prayers and with funny and beautiful posts.
Please continue to follow share and encourage it's helping and we thank everyone.
Thursday, July 16, 2015
Momma Fran: Photo Update
Today Chaplain Olive came the ICU to see Marqus. She gently talked
him thru more awful pain. We said prayers she anointed us with oil.
She asked if we knew the ABC prayer
It is thanking God for something in your life starting with each letter of the alphabet . We started with apples , breathing, chewy (the puppy), dogs , and the list kept growing. We talked about Gods wish and plan are not always apparent. Chaplain Olive was so kind and so compassionate while helping us both find hope and good in the midst of pain and uncertainty. She reminds us that thinking about positive instead of lying in wait for next ruthless jab of the Sickle pain helps ease the effects. Just like my friend said the other day replace fear with hope.
The last chapter of our book is not at its end. I have to continue my ABC prayer
She asked if we knew the ABC prayer
It is thanking God for something in your life starting with each letter of the alphabet . We started with apples , breathing, chewy (the puppy), dogs , and the list kept growing. We talked about Gods wish and plan are not always apparent. Chaplain Olive was so kind and so compassionate while helping us both find hope and good in the midst of pain and uncertainty. She reminds us that thinking about positive instead of lying in wait for next ruthless jab of the Sickle pain helps ease the effects. Just like my friend said the other day replace fear with hope.
The last chapter of our book is not at its end. I have to continue my ABC prayer
Today I tried to go home for a shower and lunch instead I played with
our pups even my very old guy found the strength to jump around.
We gave them baths they rolled around in blackberries and looked polka dotted.
I forgot to eat lunch but rendered the shower. I'm sure the ICU staff appreciated that LOL!! And headed back to the hospital.
My husband is cleaning Marqus room. In matter how bad he feels he try's to pick up after himself but the pain wounds dressing treatments medications etc
Are a ton to keep in order.
Martha Stewart would have a nervous breakdown in my house. Lol!
Here's the thing at least we still have a house!!!therefore when I get a chance
I will have more to clean...
Thank you to everyone that's following
This page has been dormant for sometime and we have to change that.
Good night and I will keep the updates going. I'm praying tonight thanking God for my husband whose sense of humor makes smiles and Chaplain Olive whose gentle calm spirit eases the soul.
We gave them baths they rolled around in blackberries and looked polka dotted.
I forgot to eat lunch but rendered the shower. I'm sure the ICU staff appreciated that LOL!! And headed back to the hospital.
My husband is cleaning Marqus room. In matter how bad he feels he try's to pick up after himself but the pain wounds dressing treatments medications etc
Are a ton to keep in order.
Martha Stewart would have a nervous breakdown in my house. Lol!
Here's the thing at least we still have a house!!!therefore when I get a chance
I will have more to clean...
Thank you to everyone that's following
This page has been dormant for sometime and we have to change that.
Good night and I will keep the updates going. I'm praying tonight thanking God for my husband whose sense of humor makes smiles and Chaplain Olive whose gentle calm spirit eases the soul.
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