charlotte's tangled web

Faith & Salvation

Faith & Salvation

Roby Baird’s Journey

“I’m going through the toughest time of my life. My tumor is back, and it is cancer. This time I am going where God is leading me. Therefore, I am going to worry about nothing  and pray about everything. I know God will take care of me. God has a plan for me.” ~ Roby Baird 8/30/18

At home, in the back yard. An emotional moment of words spoken. Saint Augustine, FL, 8/30/18

I know many people that have a strong faith in God, but I must say Mr. Roby Baird is quite unique, someone special; his faith is definitely on a higher level. I think he would make a wonderful minister or youth leader. I know for some people that the talk of religion is uncomfortable. I’m also fully aware whether you are religious or non religious, or of a different belief system, that it doesn’t make you any more or any less of a good person.

As a person of faith myself, the way I see it is that anyone can go to church, or anyone can work in a church, but that doesn’t mean that they have full faith or deep understanding of what it is like to be a believer in Jesus. There are those that after the church doors swing closed,  “followers” go back out into the world picking up where they left off; being hypocritical, judgmental, uncompassionate, and lacking empathy for others. It’s called ‘Talk without action.’ I have seen it. So, please don’t be turned away by the talk of religion.

Religion is important to this story because this is Roby’s story. He wants to share his journey, and in Roby’s heart, his faith is as much a critical component to conquering his cancer, as is his choice in cancer treatment.

Tattoo, ‘By His Grace’, Saint Augustine, FL, 8/30/18

So, for anyone who is not religious, religious, or is of a different belief, I hope you will be inspired by the journey that Roby is about to take. Because this is not just a story about him battling brain cancer, it’s an inspirational story about his faith in a higher being. I believe we are all brothers and sisters, so my hope is you all will take this journey with him. Universal love and support is what he needs, as well as compassion and understanding for his choices in going through a holistic approach to heal himself.

In 2104 Roby had undergone surgery on the left side of his brain for a benign tumor that was the size of a walnut. ( original story here). In March of 2018, Roby began having those similar warnings that he was all too familiar with; he was having recurring headaches, dizzy spells, and feeling completely worn out. Roby went in for an MRI. The MRI showed a “blip” as he calls it, where the last tumor had been. The size of the newest “blip” measured 8 by 9 millimeters in size. The hope was that perhaps it was scar tissue.

But, in June the symptoms became more frequent, and he began having trouble getting out of bed without falling over.

On June 16th, Roby had another MRI, and it revealed the “blip” had grown, showing to be 14 by 15 millimeters in size. Another, more invasive MRI was performed. These results confirmed he now had a grade 3, malignant astrocytoma. Though the new astrocytoma is smaller in size than the one in 2014, (about the size of a piece of corn), it is cancer.

On August 1, 2018, Roby’s tumor was removed.

Roby’s physicians wanted to begin chemo and radiation immediately after, but Roby has opted out of that option. He has been researching the benefits of going the holistic approach for years, since the time his ex-wife had been diagnosed with Hodgkin's Lymphoma. It was then that Roby saw firsthand the medicinal, healing benefits the cannabis plant could have. With all that Roby has researched, with firm conviction, he feels confident in his decision, and believes strongly that God is with him every step of the way.

Roby arrived in California on September 6th to seek treatment at Green Bridge Medical in Santa Monica. When Roby decided that Green Bridge Medical is where he wanted to go, he began researching for a place to reside during his time there.  He decided that it was worth traveling up the coast to Redding, CA., to be near a church he has long wanted to attend; Bethal Church. The distance between Santa Monica and Redding is a long 10 hour drive, but being that medical marijuana is legal in the state of California, Roby is able to have his medication mailed to him. Being this is the most difficult time of his life, and so far away from his family and friends, he wants to be able to worship and spend his time building his relationship with God at a place he has long desired to be. He went on to say, “Happiness comes from circumstances and when you go through good times in your life you tend to be happy. But, when we go through trials and painful times in our lives, happiness is usually not there.  And, the beautiful aspect of having an intimate relationship with Jesus is that He brings joy.” Roby feels he has been lead to the right place at the right time.

Roby met with Dr. Allan Frankel on September, 7th for his consultation, and on Monday, September 9th, Roby began his first dose of treatment on Tuesday, September 18th at 6pm. He is on what is called the “Quad Regimen”, 5 mg of Delta 9 THC, 5mg of CBD, 5 mg THC - A, and 5mg of CBD -A.

Note: Roby is in California to receive full plant extract because it is not legal in the state of Florida.

I spoke to Roby today,  Roby feels the reason he has been having painful episodes such as headaches, gastrointestinal issues, muscle spasms that occur first in individual parts of the body, then spread out through his body creating whole body spasms. Roby believes this is because the cannabis is doing its work, and healing his body.

So, our story will continue, as Roby will  update us from time to time. I personally feel blessed to have Roby as a dear friend, and humbled that he is allowing me to share with you all this most important time in his life.

“Weeping may endure for a night, but joy cometh in the morning.” Psalms 30:5, Roby recited.

I could feel those words. I could feel them for him, and I feel they are good, reassuring words for anyone going through trials and tribulations.

The sun will shine in the morning.

~ Jennifer Kaczmarek

Roby Baird, Saint Augustine, FL., 8/30/18

Helpers of Roby started a Go Fund me page to help him with his living expenses and treatment expenses until he is able to work again. If you would like to donate, you may do so here






Bruno: Dravet Syndrome

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

Dravet Syndrome is a rare genetic epileptic encephalopathy(dysfunction of the brain). It begins in the first year of life in an otherwise healthy infant. Prior to 1989, this syndrome was known as epilepsy with polymorphic seizures, polymorphic epilepsy in infancy (PMEI) or severe myoclonic epilepsy in infancy (SMEI). The disease begins in infancy but is lifelong.  (via the Epilepsy Foundation, read on for more information)

February 8, 2016 - This visit with Bruno took an unexpected turn, and this experience shed even more light into the unpredictable life that Jacel and Bruno lead. I know that there are hundreds, if not thousands of other families that can relate to their story. The numbers are baffling and the stories are heartbreaking;  there are so many suffering day in and day out from debilitating illnesses. In the past week alone I personally know of three children that have ended up in ICU.  These families live in fear not knowing what each day will be like for their child.

I met Jacel over at B & V Thera-Pro Associates, in Miami, FL., where Bruno receives therapy. This is his home away from home you could say. He has three different types of therapies, each for one hour, three times a week.

It's wonderful to see this smile on his face. Remember, this is a little guy who is four years old and can not speak. Every tiny task he manages is seen as overwhelming success. He is pictured here in his new chair/stand that he has recently received, it enables him to be in a standing position without assistance.

When Bruno was finished with therapy, Jacel took him to get his hair trimmed. Bruno left with a nice little fade on his head. We decided next time he should have a couple thin lines shaved on the side. He would look really cute with that.

I had a little scary moment after we went to grab something to eat. Jacel needed to run into a store, and I waited in the car with Bruno.  I was sitting talking to him and shooting pictures with my phone, when all of a sudden he started seizing. I can say that an overwhelming rush of panic went through my body. While I have seen him seize many times, I have never been alone with him when it has happened. I wasn't sure what to do. And, being unsure of how long Jacel might be, and not knowing how long the seizure would last, the moment was nerve racking. "What do I do? " I was envisioning myself picking him up and running to find her, but I wasn't sure exactly where she was. Just as I was about to get out of the car, I saw Jacel coming around the back of the car, and I thought, "Thank God!


February 9, 2016 - On this day, we met with Dr. Ian Miller at Miami Children's Hospital. He is Bruno's neurologist. This was to be just a routine visit for Bruno. Dr. Miller was just following up with Jacel on how Bruno was doing. Bruno has been fortunate to have been selected for a CBD trial being conducted at the hospital. I can only imagine how many other parents would wish to have their child be included in such a fantastic study such as this.

Jacel says, "He was on the blind study the first four months, some days were stable, and some days were hard. It was hard to tell." Meaning that she is not sure if he was receiving a placebo at the time, or if it was the actual CBD.

 

 

After the first four months of unknowing, he then began truly receiving CBD in September of 2015.

Note: When I first met Bruno in August of 2014, he was having over 300 seizures a day. Then he went to Colorado and California by November of 2014 and started on Jayden's Juice, Charlotte's Web, and other cannabis oil such as THC oil, to help hen big seizures were present. Bruno then had a sudden decrease in seizures, he was down to 50 a day. "During our use with cannabis we prevented the use of rescue drugs, as cannabis replaced them with little side effects compared to the rescue drugs used, such as Diazepam and Klonopin. Imagine if he was on CBD and THC combined legally here in the state of Florida where he would receive the correct dosage of THC oil that he needs instead of harmful pharmaceutical recue drugs to treat his major seizures!"

In March of 2015, Bruno stopped cannabis all together, and was stable. Months later he started the trial.

 

 

After meeting with Dr. Miller, Bruno was to follow up on other tests.  We preceded on to having his routine blood work done. Unfortunately, it was something Jacel was going to have to go back to have done the following day because they were having difficulty getting enough blood drawn from him.

 

 

From here we moved on to our next location, Bruno was to have an EKG test. Once we got upstairs, Jacel and I noticed that Bruno started not to seem himself.  As you can see in this image, a change has now started to occur. He began having long dazes. He wasn't himself at all. Usually he's arms and legs are waving. He was completely still, and began to be unresponsive. You can see the concern on Jacel's face.

After Bruno's EKG we sat in the waiting room right outside for a little while to see if he would snap out of it. Bruno was feeling warm. This fever would soon come to be a sign of what was yet to come. Jacel began giving him some medication, but nothing changed. We decided it was best to go back to Dr. Miller.

 

Once we arrived to Dr. Miller's office, Bruno began having seizures. These seizures were different and not so noticeable to the eye as other seizures he has had, except for his hands, they were shaking as the seizures were happening. After trying a few emergency medications that seemed to have had no effect on him, Dr. Miller suggested we head to the emergency room. He notified them we were coming, and when we arrived another seizure insued. The nurse took Bruno from Jacel's arms into hers, and rushed with him down the hall, around the corner, into the trauma center.   

20160209_130537.jpg

Within seconds, there was one after another entering the room attending to Bruno. It was a pretty intense time, so I don't remember how many doctors and nurses were attending to him.  Never did I think that our day would have come to this.

But, this is a true indication of what life is like for the suffering and their families. They live never knowing what their day will bring. 

That night Bruno was submitted into the ICU. During the night his fever spiked and he had four seizures, bringing his oxygen level down to 1%.

 

This image represents all the children that are suffering.

Bruno was finally released from Miami Children's Hospital on Feburary 11, 2016.  What they discovered was that he had contracted Coronavirus, which can be equivalent to a common cold. The nonconvulsive seizures, and spiked fevers were all indications of the cold he had contracted. This goes to show how delicate the bodies are of these children. Can you imagine all of these things happening, and seeing your child turn blue and go to having 1% oxygen?

I would like to thank Dr. Miller and the entire staff that I met that day at Miami Children's Hospital. Everyone I encountered was so kind.

Please I encourage everyone seeing this to please share with your family and friends. Spread the word. The road the suffering and their families are trudging is beyond difficult.

I am committed to sharing these stories in hopes that hearts are being reached. People are not only suffering, they are dying; children are dying. These stories are more common than you would think. We can't sweep them under the carpet anymore. Everyone deserves the chance to try every option available that may be able to not only ease their suffering, but to save their life.

Educate, Advocate, have Empathy, Compassion, and Love.

#dotherightthing #fightthegoodfight #makingpicturesmatter

#WEEDthestoryofcharlottestangledweb

~ Jennifer Kaczmarek

 

ADVOCATE, EDUCATE, & INSPIRE

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

Become a sponsor

Please consider donating any amount to support the work in progress, Charlotte's Tangled Web' in an upcoming group exhibition that will be at the Orlando Museum of Art opening June 11th, 2015. Your donation is to help assist with exhibition costs. Realizing this is a complex and controversial issue, our goal is to change the public's perception by educating and advocating for those suffering who are in need of medical cannabis. We believe strongly that visual storytelling is the most powerful way to connect with an audience. Our families featured in this exhibition want you to know that they have tried everything else, and this is their last hope.

For more information please go to: http://www.takingfocus.org/tfblog/sponsorexhibitionoma

We are a 501c3 organization. All donations are tax deductible.


Roby Baird- "Charlotte's Tangled Web"

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

Roby Baird at home. Image shows the scar from Roby's brain surgery where he had 17 staples.  Saint Augustine, FL.

Roby Baird at home. Image shows the scar from Roby's brain surgery where he had 17 staples. Saint Augustine, FL.

"On March 7, I woke up that day planning to go surfing with some friends, but our plans fell through.  So, I'd decided to head over to Wal-Mart to pick up a few things I needed, and on my way there I swung by my kids' place just to say hi to them."

Roby pulled into the Wal-Mart parking lot, finding a space for his car. He said within seconds alarming events started to spiral. Roby describes a flood of memories began rapidly escaping his mind, as a horrible pounding pain in his head followed.

"The last moments I remember were my fingers and toes going numb, and the numbness going up my legs as if going into paralysis, and continuing up my body through my arms."

He opened the door wanting to get out and stand up, but he started to black out as a seizure ensued. He fell out of the car onto his face, hitting the pavement.

He is unsure how long he was there until he was found.  Coincidentally, it was a couple who attended Roby's cousin's church in Palatka, FL. who had found him.

Paramedics rushed him to Flagler Hospital in Saint Augustine, FL. A CAT scan discovered that he had an abnormality in his brain. An MRI showed a tumor.

Doctors immediately started him on several seizure medications.

On April 16th, Roby had a biopsy done at Flagler Hospital in Saint Augustine. Seven pieces were removed from his brain. Five of those pieces were sent to the Mayo Clinic in Rochester, Minnesota, and the other two were sent to Shands Hospital in Gainesville, FL.

April 22, Roby went to Shands Hospital in Gainesville and was told of the seriousness of the location of the tumor. Roby's tumor was sitting in a delicate place. Doctors needed to figure out how best to remove the tumor without permanently effecting his memory and speech. Roby's doctors ordered another MRI on May 7th, in order to decide how best to remove the tumor without doing permanent damage.

Deanna Baird, Kylee Baird, and Roby Baird singing at River Oaks Community Church at R.B. Hunt Elementary School. Saint Augustine, FL.

Deanna Baird, Kylee Baird, and Roby Baird singing at River Oaks Community Church at R.B. Hunt Elementary School. Saint Augustine, FL.

On the night of May 8th, Roby was restless lying in bed unable to sleep, partially due to the medication and partially due to his uneasiness and worry of what this new MRI was going to reveal. Emotionally Roby goes on to say that as he lay in bed, it was the first time he had ever heard God's voice. God told him not to worry and that everything would be ok. He was told the tumor had moved, and that He would be there for him.

Roby considers himself a born again Christian. He says his "faith in the Lord" is very strong and is what wills him each day.

On May 9th, his doctor personally called to tell him amazing news which they discovered from his latest MRI. His doctor called to say, "You are not going to believe this, but the tumor has moved."

Roby said that the news was the confirmation he needed; a reassurance to what he had been told the night before. "What happened did happen. I did hear God's voice!"

The MRI showed that the tumor had shifted a bit, making it easier for doctors to remove it.

May 14th was the day of Roby's brain surgery. It was very successful although the tentacles that were attached still remained. This news meant that Roby's memory and speech would not be affected.

 

Kylee Baird and Roby Baird during worship at River Oaks Community Church in R.B> Hunt Elementary Church. Saint Augustine, FL.

Kylee Baird and Roby Baird during worship at River Oaks Community Church in R.B> Hunt Elementary Church. Saint Augustine, FL.

Seeing the Benefits of Cannabis First Hand

Roby disclosed to me how he has seen the benefits of cannabis first hand. The events began in 2002 when they discovered that his former wife had a lump on her neck while pregnant with their son Garrison. It was tested, and no form of cancer was found. After Garrison was born, it went away.

In 2004 his wife became pregnant with their 5th child; the lumps suddenly started popping up all over her neck. She was sent to Shands in Gainesville and was diagnosed with stage IV Hopkins Lymphoma.

She began chemo and radiation right away. The pain was so sever that doctor's prescribed her Oxycodone, but Roby said that when she would take the medication, it would knock her out for 6 or 7 hours. "She couldn't eat a thing; she was just wasting away. She couldn't even swallow her own spit." Roby said.

A friend then suggested marijuana. "At first I was so against the idea. I just thought like many, that it was just a drug that people abused, but my friend suggested I speak to a girl with whom we had gone to high school that was living and working for a doctor in California. I gave her a call, and we spoke for a couple of hours."

"Next thing I did was purchase a vaporizer and illegally bought marijuana. At that point, I didn't care. I was just trying to save my wife's life."

"Within 20 minutes of in-taking, she asked for a glass of water and drank the whole thing. Right then I was amazed."

Doctors had previously told them if she wasn't able to consume food soon, they would have to feed her through a tube because she was losing weight so fast and unable to eat.

"Thanks to the marijuana, she was able to eat and gain weight."  Roby says that he never mentioned the marijuana to the doctors because he didn't know how they would react. But, he knew what was saving his wife.

Roby went on to say that when her life got back to normal she stopped using the drug. She only used it during that most difficult time, and used it only for what it was intended to be used for.

Roby wishes, that he too, had done the same after his surgery. His surgery left him with horrible head pain. He felt his mind was void for weeks after.

With the Astrocytoma that is left in his brain doctors are just going to continue to keep watch. If those tentacles were to be removed it would affect his memory and speech for life.

"I think that marijuana is one of the most amazing tools against cancer on the planet. With the right CBD and THC combination, it will cause the apoptosis, the cellular death."

"If all they allow in Florida is the oil, then I am cool with that because that is all I want to use. It kills cancer better; it's more effective. I've done so much research and reading on this subject that I know what I need."

"It's a plant. The medical industry hates it- the pharmaceuticals companies despise it, because it's all about the money. They've done just the pill form of THC, but you need the CBD. The two have to work together in symmetry.  You have to let it work together the way God created it."

Roby says that he does not look at this experience in a negative way, but that it has only drawn him closer to his faith and people. He believes God has a purpose for him."It's been a great tool", he goes on to say, "I've been able share my experiences with all the people that I have met since this has happened to me. I've been able to meet people who have been through the same thing or going through it now. It has been a gift from God. "

Roby Baird seen here photographed outside with four of his five children: Garrison Baird, Deanna Baird, Kylee Baird, and Jasmine Baird. River Oaks Community Church at R.B. Hunt Elementary School, Saint Augustine, FL.

Roby Baird seen here photographed outside with four of his five children: Garrison Baird, Deanna Baird, Kylee Baird, and Jasmine Baird. River Oaks Community Church at R.B. Hunt Elementary School, Saint Augustine, FL.




Why I Started This Project

Charlotte's Tangled Web

 

The state of Florida at this moment sits at the forefront of a major decision that could impact thousands of lives. With Charlotte's Web now signed into law, the important vote hangs in the balance when the public votes on Constitutional Amendment 2 come November 4th, 2014. Charlotte’s Web, also known as the “Compassionate Medical Cannabis Act of 2014”, has a limit on cancer and epileptic candidates. When it was legalized, it created a huge dichotomy between its one strain of medical cannabis of low THC, high CBD, and that of the all encompassing Amendment 2. This would permit all strains of medical marijuana to be available for those on a wider range of afflictions who have been deemed in need by the evaluation of their licensed medical physician. This complex and very controversial matter comes with a question: What should be the level of care that exists for a patient in need of medical marijuana?

If your wondering how this project came about, it happened like this:

My partner Jason Greene suggested in one of our meetings I look into Charlotte's Web, being it may be a topic I would be interested in due to it's heavy debate in Florida right now. I recalled a little girl in a documentary that I had seen some time ago on CNN called, "Weed", commentated by Dr. Sanjay Gupta. I forgot that that the child in the documentary was actually Charlotte Figi, the then five year old little girl that Charlotte's Web was named after.

Researching I stumbled upon a CNN interview with single mother of two, Jacel Delgadillo. In the interview she was speaking of her deep desire for her son Bruno to try medical marijuana. Charlotte Figi suffers from Dravet syndrome, the same condition that Jacel's three year old, Bruno Stillo suffers from.

This subject understandably comes with many preconceived notions. I hope you will take this journey with me. My goal is to bring awareness. My hope is to educate the public.

 "If you can't explain it simply, then you don't understand it well enough."

-Albert Einstein

 

Here is the CNN interview where I discovered Bruno's story: