Jon's Message to Friends at The Dark Side: Comics and Games

Today I am posting on behalf of Jonathan Minner as he continues to battle Burkitt's Lymphoma. When I last went to visit him in Tennessee, I helped him record a special message just for our friends at The Dark Side: Comics and Games.



Please consider donating. Even if you can only afford five dollars, every little bit will help Jon pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

A Great Turnout!

A great big THANK YOU to everyone who attended, promoted, donated, assisted and volunteered at Jonathan Minner’s Celebrity Bartender fundraising event on May 16.

I could not have done it without the help of Treasures Thrift Shop benefiting Tidewell Hospice and the Polo Grill went above and beyond what we expected of our hosts. It was wonderful to see friends from Cutting Loose Salon (the BEST salon in town, and I’m not just saying that because of their generosity), The Dark Side: Comics and Games, Tidewell Hospice, and many, MANY local businesses.

Thank you, Anne Winetraub, for your kindness and generosity. Although I did not know you when I first reached out to you for help, you were someone I could count on throughout the entire process. Thank you Mom, Chip and Nikki Orth, Kerry Koppin and Deborah Kenny for the significant roles you played in making this dream come to life.

For our first fundraiser we had a great turn out. We raised at least $2,000 (we are still calculating tips collected from the polo grill), all of which will help to mitigate medical costs as Jon continues to battle Burkitt’s Lymphoma. I hope to hold a second event in the upcoming months. No details yet except the best one: Jon should be there. ☺

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

Thank You and an Invitation

Jon thanks you for your generous support as he continues to battle Burkitt's Lymphoma in the video below.



Although we have come a long way in our fundraising efforts, we still have a long road ahead of us. If you are in the area, join us on Thursday, May 16, 2013, from 6-9 p.m. at the Polo Grill (10670 Boardwalk Loop Lakewood Ranch, FL 34202) and support Jonathan Minner and his fight with Burkitt’s Lymphoma. Enjoy happy hour specials, raffles, and a silent auction as we raise fund and gain awareness of this disease that affects many.



OUR BARTENDERS:
Anne Weintraub
Kerry Koppin
Deborah Kenny
Colleen Downey
Chip Orth
Nikki Orth
Bethany Culp  

GIFT BASKETS PROVIDED BY:
Cutting Loose Salon
University Auto Spa
Earth Origins
Luxury Nails John
Dough Bakery
Treasures Thrift Shop
Stonewood Grill & Tavern
Carrabbas
The Stacked Heel
Let’s Create Art
Fifi’s Fine Resale Apparel
7e Fit Spa Island
Gluten Free Bakery
Katy Rose Olive Oils
The Broken Egg
Ringling Museum of Art
AND MORE!

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

Keep on Dreamin'

This post is for Tennessee.

This is what I will remember of my latest trip to visit Jon: Muddy shoes and straw-covered pathways winding through the fair in Centennial Park. Rocking chairs made of moose antlers and twisted wood. The gilded colossus of Athena standing in the hall of the Parthenon. The twisted fountain of colorful glass flowers, the endless waterfalls, the purple and white orchids in the glass roofed gardens of the Grand Ole Opry. 

I will remember what it felt like to be there with you, and what you told me that day. And whenever I remember that, I smile real big.

I love you, Tennessee.

"Some dreams stay with you forever,
drag you around but bring you back to where you were.
Some dreams keep on gettin better,
gotta keep believin if you wanna know for sure.

Ohhh, I can hear em playin.
I can hear the ringin of a beat up ol guitar.
Ohhh, I can hear em singin,
'Keep on dreamin, even if it breaks your heart.'"

And I do dream. It doesn’t break my heart, but it does bring tears of happiness to my eyes every once in a while.

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon and his family pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner and his family during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

Progress Report

An update from Marie Minner (Jon's mother):

"Jon Update: he had platelets and blood on Wednesday as an outpatient. His nose continued to ooze even days later. He called his Dr. We are now heading to the hospital to recheck labs and probably more platelets. That "B" series chemo is really rough for him! Wish him luck!!!"

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

Celebrity Bartender Night

Join us and support Jonathan Minner and his fight with Burkitt’s Lymphoma. Enjoy happy hour specials, raffles, and a silent auction as we raise fund and gain awareness of this disease that affects many.

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

More Good News!

An update from Marie Minner (Jon's mother):

"Jon was discharged from the hospital yesterday. He has finished round SIX and now he's in the two week recovery phase. This was a "B" series which is usually the rougher of the two series and this time was no exception. Very fatigued and baseline nausea most of the time. Alternating Zofran and Ativan kept it under controll but very sleepy. He also received another intrathecal chemo. His Dr. told him that he would not have to do follow up maintenance chemo after he is finished with all eight rounds. Great news! He will of course need frequent check ups."

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon and his family pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner and his family during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

Bone Marrow Biospy

Recent updates on Jonathan Minner's progress as he continue to battle Burkitt's Lymphoma: 

3.26.13: "Right now, as I am typing this, Jon is getting his halfway bone marrow biopsy to see how well his treatment is progressing. New test results show that his platelets are up to 38 and his white blood cell count is up to 1.3 ... Jon did great with bone marrow bx. My friend gave him sedation and he never knew he had it done. Oh by the way, his LDH on the 24th was 640!" 

3.28.13: "Preliminary Bone Marrow results: No live lymphoma! Great news."

4.5.13:  "Jon Update. He just got discharged from the hospital after completing round five-week of chemo! Yeah! He will have to go back on Monday for an intrathecal (spinal) chemo, for the day , then again on Thursday for an all day chemo then hopefully he will have 1 1/2 week rest. His counts are reasonable at this time and he is feeling good, not great but he's still very fatigued has low level nausea most of the time. The good news is that it's manageable for him."

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

Roller Coaster

Updates this weekend about Jon from Marie Minner, Jon's mother: 

3.23.13: “Busy week for Jon and the blood bank. He was admitted for platelets on Monday. His platelet count was 14 thousand with normal range 150-450 thousand. We knew they were low because his nose kept 'spotting' all weekend, a sure indication of low platelets. 

He was admitted again on Friday this time for platelets and red blood cells. His platelets were still 14 even after the platelets on Monday. His hemoglobin was below 8 so he needed red cells (packed RBCs) 

Both visits required admission for the day, it's outpatient but because he has to have special radiated blood due to his immune-suppressed state it takes hours to get from Red Cross. It's typically a 12+ hour stay. He certainly looks "less pale" after getting blood and has more energy. He has another week off before starting round five on Monday, April 1. 

We are hoping for no more hospital visits until then.”

3.24.13: “Unexpected admission to the hospital. Jon has an infection requiring antibiotics and IV fluids. Luckily he will not have to have surgery tonight but he will be checked by general surgeon tomorrow. We are praying that the antibiotics will be enough. He's really disappointed that he didn't get to stay home for the two weeks off chemo as planned. His next session is scheduled to start April 1.” 

3.25.13: "Good news, no surgery need, Temps 103 all night which delayed getting blood, normal now. Plan for some scans today."

Life has its highs and lows. You don’t have to be old and wise to know that much, but when cancer touches your life those ups and downs can really make you want to yell “STOP THE RIDE, I WANT TO GET OFF!”

I don’t know what it’s like to be the one who’s sick. I can only speak as someone who is cheering Jon on from the sidelines, wondering every day how he manages to maintain his cool. I don’t think I will ever forget the night he told me that he was sick. I remember feeling my heart sink as he told everyone else to leave us alone in his hospital room. When they had gone, he held me tight in his arms, my head against his chest, and he said, “Babygirl, the doctor came in and spoke with me today. I have Lymphoma.” Even then, his voice was so calm and reassuring. We will make it through this, and we will do it together. Jon’s strength is inspiring.

Every day something new happens. We rejoice at the good news, we make the best of the bad. Ups and downs, highs and lows.

For me, it’s been a steep learning curve, but I am beginning to believe that every moment of my life has been preparing me to better deal with new situations during Jon’s treatment as they occur. When it comes to coping with stressful situations, I can confidently say that I have more experience now than I’ve ever had.

Don’t get me wrong, I still have days when I just don’t want to get out of bed. The difference between me now and a younger me is that I don’t do it. “One day at a time” is a great thing to say if you’re having a good day. But I’ve found that it’s actually a lot closer to one moment at a time when you’re having a really bad day. When I’m tempted to shut down and wallow in self-pity, I turn my attention outside myself. Often, I grab my dog, Lindy, and we walk over to the hospital to visit hospice patients. It makes me feel better to know that I didn’t succumb to the temptation of doing nothing for myself — that what I chose to do instead was help others and by doing so, help myself. Because I chose to help myself, I am more prepared to be there for Jon when he needs me, which is what I want more than anything.

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

Halftime

An update on Jon from Marie Minner: "Jon is scheduled to come home today after he finishes the second unit of blood. His LDH is down to 794! He feels good, just a little "chemo-ey". He is really ready to go home. Each hospital stay gets harder and harder but the good side is that he has finished the forth round and is half way finished. Yeah for the half-way mark! Can I get a hallelujah!!!"

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

Round Four

According to Marie Minner, last week Jon had “a bit of a set back, Jon's platelets are too low to start this round of chemo so they are sending him home until Monday. His LDH is 1510 but Dr Murphy thinks he's far enough along that he will be able to wait until then.”

Today, Jon returns to the hospital where his blood will be tested again. If his platelets are high enough (he had a transfusion to help increase his count), his can begin his fourth round of chemotherapy.

Last time, this was a difficult course of chemo for Jon. He developed sores in his mouth and throat that were so painful he could not talk or eat for days and had to be fed intravenously, and his legs would give out beneath him if he tried to stand. They say that each round of chemo gets easier. I hope that it is the case this time around.

When his blood is tested, the level that I watch with the most interest is his LDH. LDH is used to to check for tissue damage. Accoring to MedlinePlus, “The protein LDH is in many body tissues, especially the heart, liver, kidney, muscles, brain, blood cells, and lungs.” In Jon’s case, it is an indicator of how well his treatment is going. The typical “Normal” range is “105 - 333 IU/L (international units per liter).” When I first brought Jon in to the hospital, his LDH was close to 3000 IU/L.

If you pray, please keep Jon and his family in your prayers. If you think, please keep them in your thoughts.

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon and his family pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner and his family during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

Facing a Fear

“On our darkest day 
When we're miles away 
So we'll come 
We will find our way home 

If you're lost and alone 
Or you're sinking like a stone 
Carry on 
May your past be the sound 
Of your feet upon the ground 
Carry on, carry on, carry on” 

I used to get scared when I was alone at night. I asked a good friend of mine, Colleen Downey, (who confided that she used to experience the same feeling) how she managed to overcome her fear. She told me that one night it just dawned on her that she is never actually alone.

There are over seven billion people in the world tonight. No matter how I feel — happy or sad, scared or angry, lost or alone (or sinking like a stone) — somebody out there has felt the same way before at some time. This person may even feel how I am feeling right now. Songs like, “Cary On” by Fun, remind us that we are not alone and encourage us to remain hopeful.

Then, instead of thinking about how scared and alone I feel, I think about all of the people who love me. I think about my friends and my family. I go through the list one by one, and I visualize what each of them might be doing at this moment. Watching TV, laughing over a beer with friends, playing a board game at a comic book shop, returning from a long day at work to an empty house… By the time I get through that list, I don’t feel alone or scared any longer.

So I dedicate this song to Jon, who is about to go through another brutal round of chemotherapy. And I dedicate it to anyone out there tonight who might need to be reminded that we are never really alone — simply because we are all human.


Do not worry, love. I am here.

Please consider donating. Even if it is only five dollars, every little bit will help Jon and his family pay for medical costs as he continues to battle Burkitt's Lymphoma.

Giving to Jonathan Minner and his family during this time of crisis is easy and safe. Using the Paypal Giving Widget to the right, select the amount you wish to donate and click on the "give" button. If you are on a mobile device or, you may alternately use the "donate" button below. Please note, if you use the button below rather than the widget, your donation and name will NOT display to the right.

You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

An Update on Jon, and Calvin Plays the Banjo: Part 2

Jon Update via Marie Minner (Jon’s Mother):  

“He has enjoyed being home for the last 10 days, especially over the weekend which included a visit from Bethany (Bethany Culp). He remains extremely fatigued with some generalized aches and pains probably from the WBC booster he got last week, but overall feeling fairly well. Last night he ran a temp that easily responded with Tylenol and none today. He will return to the hospital on Friday to start round four (series B), not his favorite. He has tried to limit going out to avoid getting sick, but wanted to take Bethany to his favorite eateries, Uncle Buds and Maniacs. Luckily his white count has been high enough to venture out. I would have gone stir-crazy by now but "he's hanging in there". Everyone at work ask me how he's doing and I guess that's my best answer. We are taking one day at a time and thankful for every one of them, our friends and family and Dr. Murphy and the medical staff at WMC.” 

A few people have requested to hear more of Calvin Minner’s banjo music, so I’ve uploaded a second video:


Please consider donating. Even if you can only afford five dollars, every little bit will help Jon pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

A Night in Tennessee

Jon's father, Calvin Minner, is an award winning banjo player. When I visited Jon this weekend in Tennessee, he played for us. I believe that it is impossible to feel sad listening to banjo music.

Those are the moments I enjoy the most — spending time with family and friends, safe and warm indoors on a cold night, letting the music sooth away the rough edges and fill my soul with comfort. Four days seemed like such a short time, but I was so fortunate to be able to spend time with Jon between treatments when he is feeling most like himself. Being affected by cancer makes me want to hold on to every happy moment. I’m learning to live and love day by day, which is what I should have been doing all along.

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.

If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.

Jon's Diagnosis

Jonathan Minner, a senior at Ringling College of Art and Design, was diagnosed with a devastating disease this January.

It happened overnight. Jon, a health-conscious 31-year-old about to complete his final semester of college, woke up one morning with dozens of blood-filled blisters covering the inside of his mouth and throat. The disease had destroyed Jon’s ability to produce healthy platelets, a cell found in blood that plays an important role in blood clotting properly. If Jon had fallen or accidentally cut himself, the result would have been catastrophic.

After several long days in the hospital, the diagnosis was confirmed – Jon had an extremely rare form of cancer, Burkitt’s Lymphoma. Burkitt’s Lymphoma affects thousands of people in the world, but only 300-1200 in the United States each year. The disease is so aggressive that tumors can double in size within a 24-hour period making it “the fastest growing human tumour,” according to a recent article from The Lancet.

Jon’s treatment could not wait and intensive chemotherapy began immediately and will continue in the coming months. Jonathan’s life is on hold while he battles with Burkitt’s Lymphoma. There is no down time. Jon is unable to complete school and obtain his degree. He is unable to work. With a growing medical debt, Jon and his family need your help. Your contribution will make a real difference in the life of a person who is fighting for his.

How to Give

Please consider donating. Even if you can only afford five dollars, every little bit will help Jon and his family pay for medical costs as he continues to battle Burkitt's Lymphoma. Giving to Jonathan Minner during this time of crisis is easy and safe. Click on the "donate" button below. You will be taken to the Paypal website to complete your transaction using your Paypal account, credit card or bank account.
If you have any questions or concerns, please don't hesitate to contact Bethany Culp at polymediastudio@gmail.com.