GO GOLD for the Babies
Parents wish many things for their children. To achieve their dreams ~ fire fighter, scientist, doctor, lawyer, business owner, Broadway star, professional athlete, or even Olympic Champion.
And, for some parents, we simply wish for our children to be able to grow up. To live a happy, healthy life. To live.
This is a world where we crave instant gratification surrounded by confusion of why we can’t have it ~ the journey of the diagnosis of cancer is hard, especially the diagnosis of a child. We want the child healed now. We want the cure now.
Children may be small adults (young adults), but their bodies are so much different. They fight different cancers, react to treatments and medicines very differently. They are an individual group. And, in all of this, we still want a cure for childhood cancer now.
Until that happens, there is a treatment for many forms of childhood cancer. If there isn’t ~ trials and experiments happen through a several resources. As the quest continues for the perfect cure, families are still being affected. Patrick's Everyday Warriors can provide instant gratification for the families and siblings by providing Certainty in the Midst of Chaos. For this, we need your help. Why?
In Those Facts We Find Our Purpose
Patrick's Everyday Warriors has found the missing piece ~ a need that isn't met ~ focusing on the siblings! Providing year-round, age-appropriate events for siblings to Fulfill the Dreams of Siblings Warriors!
From A Warrior Mom: Our journey with Patrick ~ 115 days in the hospital. As we watched our warrior fight, we soon realized the impact the journey was having on his siblings. Torn on where to be and how to be the best mom, I knew there must be a way to love on and acknowledge sibling warriors. Their lives are thrown into an uncertain battlefield. No one is there to hear their cries. All they want is their family back together; they desired to be noticed too. After Patrick gained his heavenly healing, I sought places that could help me acknowledge my 3 warriors left on this earth. To help them pick up the pieces of their broken hearts and show them they too are so important ~ I found no where. No one wanted to acknowledge the sibling warriors.
We are so excited about the upcoming opportunities to love on families who are going through the journey of the diagnosis of cancer. We will be providing resources on how to communicate with your medical team (for parents and siblings), how to communicate as a family, how to grow as a family (stick together), events for siblings to feel like rock stars (sporting events, concerts, tours, zoo, museums, meals) and date nights for mom and dad. The siblings are who aim to reach, to support, to say "YOU ARE A WARRIOR!"
Remember, even there is a cure, there is still a diagnosis. And, it is a fire to walk through. Help us be there for families. We want to show them how to build and keep their faith, grow closer, learn how to communicate effectively with doctors, nurses, each other. We want them to feel loved through this. And, of course, we want to love on the siblings who are fighter just as hard as the patient. God is moving in big ways!
This journey, the people who supported us, have inspired us to create Patrick's Everyday Warriors. We will focus on families who are fighting the battle of childhood cancer. We will acknowledge the siblings as warriors as well. We will be providing support, resources, events, and family and sibling days.
Our Journey ~ 115 Days ~ Stirring the Hearts of Nations
Our journey of a unique opportunity began March 18. Patrick decided he wanted to take an extra nap. He was not a sleeping kind of baby. I was lucky to get a 45-minute nap out of him each day. But the week of March 18 ~ it changed. On March 23 ~ he woke up and wanted to go back to sleep 30 minutes later. So, we took him to see my dad (his pediatrician). Mono? Dehydrated? Since he had fallen off the couch 2 weeks prior, we decided to do a CT. God's plan unfolded before us.
A much as I longed for him to get up and play normal, eat normal, do everything in his Patrick way ~ God had other plans. He knew what He was doing ... we have gotten to see glimpses and each day we get to see it. The CT showed enlarged ventricles. My dad explained what that meant ~ extra fluid in his brain was causing pressure in his head. It also showed a mass, but my dad spared me that info as he knew I had to drive to Nashville. He let the Vandy Children's Hospital ER know we are coming in.
The ER trip ... after waiting for a neurologist to look at the CT ~ he comes in to tell us our son has a brain tumor. At that point, my heart sank and stomach wanted to come up. The fear of the news washed over me.
Once the initial shock wore off ... I knew God had a plan for Our Man ~ Patrick Eli. Saturday we had an MRI ~ no news. Sunday ~ no news. Monday, March 26 10 am. THE NEWS. Dr. Matthew Pierson walks in. Introduces himself and shares that he has 15 minutes before he has to go into surgery. So we were hit with a firehose of information. He show\ed us the tumor and the spread on his brain and down his spine.
Faith took over. Prayers continued ~ fiercely. As we began to share the news, Patrick's story became one of inspiration. My journey as friends with another family last year became a true blessing. I used my growth in prayer, faith, and obedience to put Patrick in God's hands.
The next course of event sped by: Tuesday, March 27 ~ brain tumor removal. They removed the part they could. Tuesday evening ~ blood pressure sky rockets ~ 234/118. CT ~ asparated on the table. Emergency EVD. Wednesday morning ~ chokes on congestion. Thursday morning ~ Permanment shunt put it. And, here we think we have a 10 day break to rest, heal, and get ready for chemo to begin. Tuesday, fluid on his skull. 10 hour ER day. Wednesday, fluid leaking 8 hour ER day ~ admitted into the hospital. Extra stitches to control the leaking. Thursday ~ pressure begins to build in his head ~ getting sleepy, problems breathing. Thursday evening ~ only breathing when stimulated. Talk with our amazing nurse Brenna. She listens to me. Calls doctor. He hangs up on her three times. She goes over his head. Calls in a doctor from home. Brenna tells me she needs to show on paper that he is stopping breathing. I hang out in the bathroom, pleading with God for our miracle. They call a "rapid". 40 people flood our room and I am given a few seconds to explain what has been going on. God flows through my mouth and words.
Moved to the PICU. (Same room as when we were initially admitted). Continuing the same evening ~ surgeon tells us that he needs surgery. It is 2 am. Of course we agree. Shunt revision. 5 am ~ Keith and I go to get some sleep. Call at 6:30 am. Patrick's blood pressure is going up. Neurosurgeon tells us he wants to check on the shunt. 5 surgeries ~ 9 days. Wheww!
On the way to recovery ... we make the decision to go forward with chemo. This is important for his life. We get moved to the 6th floor to begin. Rounds of fluids begin. Before Chemo you must be super hydrated. Things seem to be moving forward ... then he stops peeing. The fluid backs up. Now Patrick is struggling to breath ~ respiratory distress. 80 breaths a minute for almost 2 hours. RAPID called again! They get him "stable" in the room and bring us back to PICU. Guess what! Same room.
After a few uneventful days ... the doctors want to do a CT ~ it shows the shunt is working yet now there progression of the tumor. Oncology tells us this to be expected that is why they don't do these test so soon after diagnosis and first treatment. MRI done ~ waiting for results ... we feel this is establishing a new baseline so God can show off a bigger way. We want to know what exactly Patrick's starting point is here at the beginning of chemo. First round of chemo ~ side effects: C-diff a bacteria in his colon, intestinal fungus that destroys 18 cm of his small intestines, surgery to resect the intestine, and bleeding out because of damaged intestine
We are at the point where medically there is nothing left to do. To treat one area is to harm the other. God was in control! Over 14,000 gathered with us. Patrick is the boy who is stirring the hearts of nations.
As we prayed for divine healing, lives/souls were being saved ~ national TV to talk about God! God was using Patrick for this. Every time the doctors gave up, God stepped in.
July 15, 2012 at exactly 4 am Patrick didn’t have to fight any more. We still remember that last breath. We still remember believing God would bring him back.There was a smile across Patrick's lips as he took that last breath. It was a smile that filled our hearts, realizing that Patrick was healed, finally, in Heaven.
We put together Patrick's Celebration of Life beginning with our hearts ~ Praising God. The song "Beautiful One" played by Chuck Dennie (By the Tree). As we all joined in, hands were raised, praises sang out. So grateful for the healing power of our God.
Soon, it was our time to share about our Patrick. Between sharing and videos, more praise time, the evening with close to 500 of our prayer warriors ~ 25 people gave their life to Christ.
Patrick's purpose was still being fulfilled. It is our purpose to continue it. We will get our hands dirty because we will be in the field finding those families walking through the fire ~ who need a smile, need a meal, need a shoulder, need to talk, need comfort, need the love of Jesus.
Patrick, a beautiful warrior, a fighter, and my superhero! Patrick is the inspiration for us,
leading us to share the wonderful love of Jesus as we begin the next Journey ~ Patrick’s Everyday Warriors.
PATRICK'S EVERYDAY WARRIORS(a 501c3)
SHINING A LIGHT ON Childhood cancer SIBLING WARRIORS