Why I go gold when my son’s ribbon is green

Chances are, if you stumbled upon this blog, you are here reading about my now 6 year old son Oakley’s journey with Prune Belly Syndrome & Kidney Disease.  Both are life threatening and serious diseases with no cure.  If you know me, I am a huge advocate for both diseases to bring much needed awareness.  Prune Belly Syndrome only effects 1 in 40,000 births each year so it is little known.

My son’s journey with Prune Belly Syndrome, or PBS, has been a rough road. He has had countless procedures, tests, and surgeries.  He has spent holidays and birthdays in the hospital.  He has missed out on a lot of things a healthy little 6 year old boy should have experienced.  Things like no swimming during the summer due to a catheter or a stoma.  He cannot engage in contact sports as much as he loves football.  No sleepovers due to the medical procedures he needs during the day and overnight to keep him stable.

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Oakley

 

But, he is alive.

When you give birth to a child that was not expected to survive, you claw and grasp for any opportunity you can to learn and educate yourself as much as possible.  You stay up late at night researching and looking for any type of study you can find that may benefit your child to improve their quality of life.  You join support groups online and you pound so much information into your head it could explode.  With my son’s condition, he doesn’t really fit into any single category.  I’ve joined and become part of many different groups and circles of friends to put my own little road-map together for him.

A few years back Oakley started getting little pinpoint dots all over his body.  Then his lymph-nodes started to enlarge.  I took him to the pediatrician and they ran blood work. Several more times this ‘rash’ presented itself.  They ran so many different tests to find the cause.  I remember them telling me that this can be a sign of a type of cancer called leukemia.  My heart dropped.  After more tests and meeting with a hematologist he was diagnosed with a mild platelet disorder.

Some aren’t that lucky.

My first experience with childhood cancer that hit home for me happened a few years ago.  I met a woman who had a son a similar age to my son and also had kidney disease.  We met in an online support group and really clicked.  He was on dialysis for hours each night and was just buying time until he was old and big enough to receive a new kidney.  His Mom & I would talk often on the phone and offer support to one another.  She just lived a few hours away from me and we ended up meeting in person a short time after.  I fell in love with her love for her son.  He was adopted and shortly after is when they were notified that he had serious health issues.  They were given the chance to back out of the adoption, but they didn’t blink an eye.  They took that sweet baby home and loved on him.

I remember talking to her on the phone one evening and hearing her son cry in the background.  She said he was being fussy lately.  The cry wasn’t a normal cry to me, it was a hurt cry.  Something was hurting him.  She was determined to get to the bottom of it, they thought maybe his dialysis catheter was suctioning inside of him causing discomfort at first.  But, it wasn’t that.  He was scheduled for an ultrasound.

One evening I was driving to the store.  My cell phone rang and it was her.  I answered and she said, “Sarah, they found something and it isn’t good.” She told me he had a large mass on his liver, that it was cancer.

My heart sank, I started crying.  Why?  How?  This sweet baby, his sweet mama.  His tumor wasn’t able to be resected due to a previously diagnosed bleeding disorder.  Another Mom from our kidney support group scrambled to get me a flight to Chicago to say goodbye, but it was too late.

Michelle called me, “Cole’s died.”

Cole Joseph Vida died on November 26, 2011.

 

Cole was worth more than 4.

September is childhood cancer awareness month.  Talk about it, write about it, donate.

It’s not contagious, but it can come knocking on your door for your child anytime.  Day, Night.  Summer, Winter.  Yes, your child.  Your innocent, beautiful child who doesn’t have an evil bone in their body.

I understand it makes some people uncomfortable seeing children in their weakest state.  Children in the process of dying in their parents arms.  But, if this is what it takes to get people’s attention to save these kids, that’s what has to be done.

I frequent the same circles as families who have a child with cancer.  We go to the same clinics and the same hospitals.  We go to the same events that our children are featured at.

Our children might have a different diagnosis, but we get one another.

The hurt is the same.

There is one hurt I never hope I have to feel, which is the loss of my child from his disease.  I don’t ever want to hear that there is nothing more that can be done.  I don’t ever want to have to sign those do not resuscitate papers.  I don’t want to be called into a small room while my child was in surgery to be told, “I’m sorry, he didn’t make it.  We did all we could.”

No parent should ever have to endure that.  But, they do.

25% of children with cancer die

35,000 children are being treated for cancer

13,500 children are diagnosed with cancer each year

This is why I go gold even though my son’s ribbon is green.

It has to stop.

Yes, my son’s life matters.  Yes, his disease needs awareness.

But this month, I go Gold.  This is for those lost and those still fighting the fight of childhood cancer.

A battle a child should never have to endure and a battle any parent should never have to watch their child fight.

Boy Trying To Collect One Thousand Tubes Of Scented Lip Balm

 

Oakley is just 5 years old and he loves giving back.  We started our give back opportunities through his page, “Team Oakley” which is a Facebook page dedicated to awareness of his medical condition, Prune Belly Syndrome.

We typically held an annual fun band-aid drive because what kid doesn’t want a cool band-aid after a poke?  We have collected over a thousand boxes over the years to give to Helen Devos Children’s hospital.

 

 

This time around, we decided to do something a little different.

 

While sitting down one day, I asked Oakley what sort of things made his stay better when he had surgery; what made it easier.  That is when he reminded me about the smelly lipstick that he put inside of his anesthesia mask.

 

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That is when we decided we were going to collect scented & flavored chapstick and lip balm.  We thought that this would be a great way to give back and a fun way to get other’s involved to help since there are so many different colors, flavors and scents to choose from.

Why lip balm?
What happens is a member of the child life team will walk into your holding room, the area where you wait to go back to surgery.  They will bring in about five different scents of lip balm for your child to choose from.  Once the child picks their favorite, they pull the top off of the lip balm and rub it on the inside of the anesthesia mask.  This  makes the process of going to sleep a bit easier as it hides some of the smell that the anesthesia gas gives off which isn’t pleasant.

If you look at it as each tube of lip balm is for one child having a procedure or surgery under general anesthesia, it really makes you want to push the envelope and collect as many as possible.

So we went all out and set the goal to One Thousand tubes!

 

 

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“I’m helping the kids feel better.”

As Oakley get’s older, he has really taken an interest in helping other kids who have to go through tough and painful procedures.  He has a huge heart and is a kind soul, he is always worried about other’s and how they are feeling.

We have written to Lipsmacker, a well known novelty lip balm company, and we were enlightened to hear back from them that they are going to be sending Oakley a donation for his campaign.

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We also have a few businesses that have really stepped up and are holding collection drives as well!

While no parent wants their child to have a life threatening illness or disease, it has definitely brought out some positives in our lives such as helping others.  The kids are always thinking of new ways and new ideas to bring to the table for our next campaign.

Oakley’s next surgery will take place on February 23, 2016.  We plan on delivering the Chapstick to Helen Devos Children’s Hospital on February 22, 2016.

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What Oakley has collected so far!

 

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The generous donation that Lip Smacker sent Oakley

To help Oakley with his lip balm drive, you can contact Oakley’s Mother at sarahsavickas@yahoo.com

You can mail your Chapstick or Lip Balm to:
Team Oakley
8531 W Tyler Rd
Sumner, MI 48889

There has also been an Amazon Wishlist created.  You can select from our list and it will ship directly to us; so easy!
AMAZON WISHLIST

The one phrase I wish people would stop saying

I’ve been asked many times what condition my son has.  When I tell them, they look at me with a confused on their face.

Prune Belly is a very rare syndrome and most people have never heard of it.  Honestly, I had never heard of it either – until my child was diagnosed.

I start on how his bladder doesn’t work right which leads to more questions and me telling them how his belly button has a hole in it that we catheterize him through.  By the looks I am getting, I am starting to wonder if I have something on my face.  I fumble over words like ureter, hydronephrosis and creatinine.  I need to remind myself to speak in layman’s terms because to them, I am speaking a foreign language. I eventually just settle on the fact that he has kidney disease.

Then, they say it.

“Everything happens for a reason.”

What do you do at that point?  What do you say?

My son’s condition has not been proven to be genetic.  It is not environmental and it isn’t due to something that I did during my pregnancy.

It just happened.

No explanation available, no reason.

I used to lay awake at night pondering that statement.  I would think what is the reason for this happening?  Why us?  Why this diagnosis?

It is a normal phase to go through when your child is diagnosed with something you’ve never heard of.  You want answers, and you want them now.

It’s been 5 years and I’ve finally come to terms with the fact that there isn’t always a reason for everything.

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I understand that a lot of the time, people just don’t know what to say or how to act and sometimes they can say the wrong things.  I get it, I’ve been there, we all have.

If I can offer any insight to help other’s to avoid this phrase, it would be to say, “so what does this all mean?”

Sometimes you don’t need to say anything, just listen, and if you have the time to listen, I have the time to talk.

Leland looks like your typical 5 year old little boy, but he is dying

My son was born with a rare and life threatening syndrome called Prune Belly.  When he was 12 days old, we were told that one day he would need a kidney transplant.  Since hearing those words five years ago, I have crossed paths with many people I normally wouldn’t have.

I know Mother’s of children on dialysis, I know Mother’s whose children have received a kidney transplant, and I know Mother’s who have had to bury their child because they died while they were awaiting a life saving kidney transplant.

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I don’t want 5 year old Leland to be one of those 21, but the reality is that he is going to die if we don’t find him a match for a kidney soon.

Leland has the same syndrome as my child and he is the same age.  I cannot fathom burying my child.  I can’t.  

There is something about Leland’s story that is a bit different –
His options are slim to none as far as dialysis goes.  He is down to his last and only option, a line in his leg to cleanse his blood, keeping him alive.  They cannot place a line anywhere else in his little body due to other complications such as scar tissue build up.

Look at your own child and try to imagine this as your own little boy.  A boy who smiles regardless of what he goes through, who loves Cowboys and is looking forward to Christmas.

What if I told you he might not make it to Christmas?

This is where you come in.  This is where we need you.  Yes, you.

You can donate your kidney and still life an excellent quality of life.

The transplant and testing is covered by the recipients insurance or in some cases the Transplant Centers Organ Acquisition Fund or OAF.  There is also financial assistance for lodging, meals and travel expenses available to those who qualify.

There are several tests you will need to undergo including, but not limited to:

  • Bloodwork
  • Ultrasound
  • EKG
  • Kidney Ultrasound
  • More Bloodwork

To see if you are the one that can save Leland’s life, please visit the University Transplant Center’s Breeze Transplant Online Health History Questionnaire to get started.

The faster the donor gets their testing done, the faster Leland can get the kidney he needs.

CLICK HERE to start the process

Once you are there, you will see a screen that looks like this.  Due to the fact that 5 year old Leland is under the state’s care, his last name cannot be released.  But – just type in the word ‘news’ for the last name, this will get you to the next screen to continue the survey.  They also cannot release other identifying information such as his blood type, so we need to get as many people as possible to fill this form out.

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You have the potential to be Leland’s hero.

If you are not a match for Leland, you could still save the life of one of the people who are added to the national transplant waiting list every 10 minutes.

Please share this posting with everyone you know get the word out about this amazing little boy.

Detroit Lions, you are so much more than just football players

Detroit Lions,

I know your bodies are sore and your confidence is running on empty.  I am writing this to hopefully give you some inspiration.

I am just the Mom to a little boy who loves you.  I am the Mom to a 5 year old little boy who believes in you.  I am the Mom to an amazing little boy whose medical condition holds him back from being able to play contact sports, like football.

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Each hit Matthew Stafford takes he cringes.  “Oh, no, Stafford!”  “Look, he’s bleeding, is he okay?”

“Mom, I think Calvin hurt his ankle.”

He gears himself up each week to watch you play and his little heart breaks with every loss but he never gives up on you.

He looks at me with his big hazel eyes, “next week, right Mom?”

He has laid in a hospital bed many times and if he is in the hospital when you are playing, you better believe he makes sure his game is on that TV.

So, no matter how many jerseys people spit on or burn, no matter how many fans leave that stadium early, you are still somebody’s hero.

While you are waiting to run out on that field, you might be worried about what the fans are thinking or what the media is going to say.

You might think you are just a football player, but you are so much more and I want to thank you for taking the time out of your busy schedules to make my son smile.

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You are his inspiration and maybe he is yours.

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The Blanket of Sweet Dreams, a friendship kindled from an unlikely source

Somewhere around April 2014 I came across an article regarding an amazing Art exhibit named “Corpus”.  It was painted by Mexican contemporary visual artist, Elton Duran.  Corpus was a series of paintings that were created to promote organ, eye and tissue donation which was showcased in Detroit, Michigan.

I connected with Elton on Facebook shortly after and we built a friendship.  In my experiences, the people who speak about organ donation or advocate for it usually have a personal factor in their lives that motivates them to do so.  It definitely peaked my curiosity so I asked Elton what his connection to organ donation was.

What he told me restored so much hope in humanity.

He told me that he was given a gift of talent and that it is his way to help others.

It isn’t often that you come across somebody who is so selfless and wants to help others with nothing in return.

It was at that time I knew I had to tell him about ArtPrize. ArtPrize is an international art competition held in Grand Rapids, Michigan.  It is fairly new, and just finished up it’s seventh year.  At the time I told Elton about ArtPrize, he was excited to enter however it was too late to enter for 2014.  So, he made it his mission to enter into ArtPrize for the 7th annual competition in 2015.

After following Oakley’s journey for some time now, he became Elton’s inspiration and motivation to enter ArtPrize 2015.

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Elton came to Grand Rapids to work on ArtPrize and found a host to stay with during his stay here.  There is a lot of behind the scenes work including locating and securing a venue.  I was elated when I found out that he secured the location of the Devos Place, which is an amazing convention center in the heart of Grand Rapids, Michigan.blanket

Elton titled his piece, “The Blanket of Sweet Dreams” which speaks volumes to me and many others.  This amazing piece of art was made to show that children dealing with chronic or degenerative diseases have dreams just like any other child. It is an inspiration to encourage others to become an organ donor so that children suffering from these diseases can still have a childhood and fulfill their dreams.

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On October 18, 2015, I brought Oakley down to see the painting and to meet Elton for the very first time.  We were coming to record pieces of a documentary to talk about what this painting means to us.

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Oakley is always shy at first, but he warms up quickly.  Before we knew it he was explaining what he saw in the painting and what his hopes and dreams are.  He said that he wants to be a cop when he is big and catch the bad guys.  He talked about his family and his pet dog, Presley.  He talked about how he wished that he could go to space one day and that he loves Disneyworld.

It was all surreal to me.  When recording the pieces for the documentary, I cried several times.  I cried of happiness and of sadness.

I was happy because a man that I had never met took it in his heart to create a masterpiece in honor of my son.  Somebody that doesn’t have children of his own, but that has a deep sense of empathy for others.  You don’t see much of this so when you do, it becomes emotional.  Sometimes I feel like nobody is listening when I share bits of our lives and Oakley’s journey.  This proved me wrong; that people do listen and people do care.

I cried because I was sad due to the fact that I have met so many other Mom’s online who have a child like mine.  Mom’s who don’t know what tomorrow holds.  Mom’s that have to force multiple medicines into their child’s body, sign consent forms with no guarantee of the outcome, place their child in the hands of strangers just to keep them alive.  I cried because there are children who have died while battling the effects of kidney disease.  Too many too soon.  I’ve never met so many Mom’s who have had to bury their children, ever.  Kidney disease is an invisible illness and it is a silent killer.  I cried because a very close friend of mine’s son cannot even attend school right now because he is constantly in and out of the hospital with different infections.  It was just an overall release of emotion I didn’t see coming at that point.

Once I stood there and looked at that painting, it made me realize just how important life is.

There are real kids out there fighting a real disease.  These are kids with real hopes & dreams.

After we were finished recording and chatting, we headed to dinner with Elton and his Mother.  We talked about my dream of creating a non-profit to help children with kidney disease and urological issues.  We spoke of his family back in Mexico and his Mother shared photos of their family with us.

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This is a friendship kindled from an unlikely source.

Cheers to dreams, hopes and wishes.

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Don’t let those articles and posts about Lamar Odom deter you from wanting to be an organ donor.

I am not typically one who follows the tabloids but this post that has been shared over 25,000 times has caught my attention regarding organ donation. It is written by the sister of a woman who is in need of a life saving kidney transplant; and it is full of misconception.

Don’t jump on that bandwagon just yet.

Source: Facebook

We can agree on one thing, I don’t know what Lamar Odom has been through in his life and I don’t know what drug addiction is like.

Trust me, I get it.  You are upset and enraged and so are many of the thousands of other family members and people diagnosed with a disease requiring an organ transplant as a treatment.

That’s right, kidney transplantation is not a cure, it is a treatment.

I can ensure you that just because Mr. Odom has assets beyond the typical candidate for organ transplantation, he will not be moving up the list due to his financial status or fame.  The list doesn’t work like that.

The list doesn’t care what your net worth is or who you know.

The list is managed by UNOS, the United Network for Organ Sharing who ensure that the gifts of organs go to those who are best matched.

Best matched doesn’t mean because you are famous.

Best matched means blood type, tissue type, medical urgency, time on the waiting list and origin.

You also have to meet strict requirements to even be a candidate for an organ transplant.

If Mr. Odom does indeed end up needing a life saving kidney transplant, there is no guarantee that he will be an eligible candidate.  He will have to endure the same testing as everyone else does to see if they are eligible and one of the many criteria is that you cannot have risky lifestyle practices.  You have to prove that you are worthy of receiving an organ transplant and that you will take care of it.

If he is approved, he will have to either wait on the list just like any other patient, or secure a living donor.The odds of him securing a living donor are considerably higher for him due to the amount of media exposure and fan base he has.

Before anyone starts thinking that I have no room to talk or that I would change my mind if I were in another position, I can relate because my 5 year old son was also born with kidney disease.  He has endured so many surgeries, procedures, lab draws and imaging that I have honestly lost count.  He always has a smile on his face and always lives life to the fullest.  He has also had to suffer through so much through no fault of his own.

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One day he will be on that list and I have no worries that the list will be ran the way it is intended to and that a person with will not jump above him on that list due to their financial status or fame.

All in all, even just the talk about Mr. Odom’s possible need for a kidney transplant has brought much needed awareness for organ donation.  He has already received many offers from people who would be willing to donate to him.

The only thing I am hoping is that he takes this experience, learns from it and betters himself.

I also hope that one of the things he learns from this life changing ordeal is that he has a voice he can use to advocate for organ donation.

Because every day there are 4,100 transplant candidates added to that list and 18 die each day while waiting.

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 I am so glad that this woman’s sister is finally receiving multiple offers for a kidney donor.  But at the same time it makes me sad that it had to get this far just for people to step up to donate.

While I believe her intentions were good, by posting erroneous information, this could actually backfire and deter people from wanting to donate by thinking that kidneys are just given to those who are not going to take care of them.

Click here to register to become an organ donor