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Letters from Blue Stars
Sneha Sharma
New Delhi, India
I LEARNT NOT TO GIVE UP!
I am Sneha and am 18 yrs old. I wanted to become an Air Force Pilot; there was never a doubt about this. This was a dream I harbored during the last two years in high school, or rather this was the plan. But as is the case with all such stories, my certainty evaporated when I was diagnosed with Hodgkin’s Lymphoma, STAGE IIB.
The following year I underwent a series of chemotherapies. First ABVD, then MINE, then RICE protocol. But the improvement wasn’t much; I remained mostly at home due to fear of infections. I lost my hair and became weak but I learnt never to be sad and during all this I realized the storehouse of will power my father is. I knew with him as my anchor I would get through. Then there came a point in my treatment when chemotherapies became less effective, and after many consultations it was decided that a Peripheral Blood Stem Cell Transplant was the best course of action. When I first heard those words from my doctor I was scared. More than the treatment it was the period of hospitalization that terrified me. So I did what seemed very logical at the moment, I enjoyed as much as I could before getting admitted. I indulged in the tastiest of food, saw the latest movies with my friends, and did a tad of everything I would be deprived of during my forced medical “sabbatical”. Finally when the big day arrived, I was prepared with a DVD player, music and books.
I was going to undergo BEAM protocol. When I first saw the BMT unit I was awed, all the nurses were wearing masks and dressed in pink gowns. I had to open five glass doors before entering the room. It was shinning, not a single dust particle could enter the room, with just one window in my room the world outside seemed subliminal. I thought about this blue and white room, my home for the next one month. Day one and two passed smoothly, I was hydrated and given BCNU on these days. Day three onwards I was given AraC and Etopside. The medicines did not cause as much pain as the memories of home. On day 6 I was given Malphalan, I was slowly losing my appetite even though the food was good. The day for the transplant to begin was here. There was movement all around me; nurses were arranging emergency medicines and injections. My father who always had to dress in a blue gown told me to close my eyes. Finally about six doctors came into my room carrying a small packet that was to give me a new life, a small packet that had my stem cells – ‘the seeds that were going to grow into a plant’. The process went on hassle free and my doctor told me that I was his best transplant patient. I thought it is was all over, I wondered if this was a stem cell transplant, then why is so much fuss made over it.
What I did not know was that which lay ahead of me. After two days my throat lining started disintegrating, I had ulcers on my tongue and neck and cramps in my stomach. Saliva and froth kept coming in my mouth which was very difficult to swallow because of the pain. I needed lots of platelets donations in between as well. I would vomit even if I was given some syrup, and my skin’s shade changed and finally they started feeding me through a catheter’ tube. I started having fevers and was constantly restless. I slept 20 hrs a day which was good considering that pain and memories of my sweet home won’t bother me. All this was temporary and soon I started feeling better. I still remember when the doctor allowed me to have Coke and ice-cream one day; it just took me 2 seconds to gulp it down and I felt so satisfied. The biggest problem is that when you start feeling better you miss home and your friends. I started missing them so much that I would cry every day and my nurse told me that the more I cry the more my white blood cells counts would go down and my well wishers told me to meditate. The best part is that speaking to your body works, my white blood cells started rising and I started spending my time watching the latest movies. I didn’t cry once after that and soon after a period of 40 days I was discharged. I was so happy after this that I called each and every friend of mine and screamed ‘I am coming back!!’.I was so happy to see my family and my cute dog.
What I really want to say is believe in yourself, believe in your body and everything will be fine. With will power anyone can overcome the biggest difficulties in life. My lovely parents, friends and doctors were always there for me. I am still not fully cured and may receive radiation but I am happy and living my life. It’s always not about making plans in life; it’s about getting to know life.
“It is a connection formed by angels which makes us feel like twinkling blue stars. Blue Star Connection makes me feel so good about myself that I can stand up and say ya! I know I am a great gal! When in dark, this connection is like a group of stars which shows one light.”
- Sneha Sharma
18 yrs
Derick
Coopersburg, PA
Letter from Derick’s father, John
Derick’s dad here. I wanted to thank you for this rather awesome program. It gives Derick a huge lift to know that the world cares this much about him!
- John Schubert
Letter from Derick
My name is Derick Schubert, I live in Coopersburg, Pennsylvania. In October 2007, when I was 18, I was diagnosed with a brain tumor, a grade 2 pleomorphic xanthoastrocytoma. I had surgery, and was cancer-free for six months. Then I had two more surgeries in July 2008, and the tumor was reclassified as a grade 3 anaplastic astrocytoma. I followed with radiation and a year if chemotherapy. I went away to Rensselaer Polytechnic Institute in January 2009, but had to drop out because of my treatment after a month, and went to community college locally. My tumor persisted and I entered a chemotherapy trial for Sutent at the National Institute of Health, but the trial failed after a month, and I am now planning a fourth surgery.
I love doing kung fu and tai chi at my local center, riding my bike, spending time with my friends and family, playing the drums, and now learning to play guitar on my new strat! I love music, I think it is such a great form of expression, and I’m so glad the Blue Star Connection is here for people who can use a bright spot in their lives!
Hey Colin, thanks so much for letting me know about this great program! You are a great guy and I hope I get to meet you!
- Derick
Keegan
Thank you so so so sooooooo much for this awesome drum! I like it a lot! And it’s my favorite color! I’m so glad I have friends like you.
My name is Keegan Taylor, I’m 12 years old. I was 11 when I was diagnosed with cancer. I then went through surgery, radiation and chemotherapy. It was tough but I pulled though. I am now off treatment and hopefully cancer free, if not I’ll do whatever it takes to get through it. This gift gives me something to do when I’m bored so thank you.
Thank you.
- Keegan
Letters from Blue Star Parents
Carren Hutchinson (Vincent’s Mother)
Dear John,
My youngest son Vincent and I met you yesterday at the end of the festival when you let Vince go on the stage to watch Tommy Castro’s band play. He was in heaven being up there. What a way to cap off a full day (11 hrs) of Vince be-bopping to the music! Nothing else holds his attention quite like the blues. I was really taken a back when you said you wanted Vince to be a Blue Star especially after I had just met some incredible Blue Stars and their parents who inspired me by their courageous stories. I comprehend the heart wrenching pain these parents face as they have to watch their children struggles, although, I can’t fathom the thought of loosing a child. I was so touched, I feel compelled to share some inspirational moments I experienced yesterday.
Right after Vince watched his brothers Brady (guitar) and Ryan (keyboard) play their set with the YBBB, we headed over to the main stage and saw Madeline sing. What a sweet voice! and what a sweet girl. I watch who had to be her mother in the crowd emotionally video taping her daughter singing. I later discovered I indeed had spotted Madeline’s mom when I went up to their booth to meet Madeline and her parents. I loved the story behind the jewelry that Madeline makes on her journey thru life. As I am sure you already know, since Madeline’s body does not produce her own red blood cells, she produces red blood cells with little red specks on the back of all her handmade jewelry pieces. Talk about putting a positive spin on such a hardship. They are quite a family. While I was making my purchase, it just so happened that you came over with another young Blue Star (I think you said her name was Emily) to meet Madeline and I overheard her asked you, “Am I a Blue Star?” She seemed to light up when you told her she was. Such an innocent question and answer revealed what a great thing you are doing for these kids, making them feel special while giving the gift of music.
I got to talk to Colin, your 1st Blue Star, for a second time yesterday. I had met him a while back in Boulder at the benefit you had at Blues and Greens. The YBBB got to play that benefit also. Colin just reminds me how precious life is. He is such a strong young man dealing with the pain and lethargy he endures. He was such a gentleman pretending to remember meeting me over a year ago.
Later in the day, I was learning more about BSC at the booth. I was told the story about a request by a Blue Star for a stand up bass and how one was dropped into your lap shortly thereafter by a man that was about to donate his bass to a school but heard about the request and decided to give it to BSC. That story gave me goosebumps.
As if you had nothing better to do, you were johnny on the spot when Zack, the YBBB drummer, passed out after falling down and hitting his head. As it turned out he did have a concussion. The BSC staff/volunteers were so helpful in that situation. Like you said, I had a hell of a day and you were right. I got to meet so many remarkable and giving people. All that I learned and experienced are the kind of things great books and movies are based on.
All day long people in the audience were so gracious to Vincent, it really warmed my heart. People went out of their way to show they recognized and appreciated his sincere enthusiasm. This included Austin Young who always takes time to talk to his biggest fan, Vince.
At the end of the night when you waved Vince and me over backstage (the man working security insisted we meet you), I was a bit apprehensive because I was certain you had plenty to focus on as the fest was coming to a close. While you had Vince up on stage glued to the band, I had the opportunity to I meet two more Blue Star moms. Courtney Hanes and another mom who is mourning the 1 year anniversary of the loss of her daughter. They candidly shared with mef their struggles fight for their children’s lives. They told me how their kids had a magical connection to each other. BSC opened the door not only for those kids to connect with each other, but also for two hurting moms that seem to draw strength from one another.
I hope all of this brings to light how amazing Blue Star Connection is and how it positively impacts so many lives, mine included, by getting to be a witness to ripple effect of giving.
- Sincerely, Carren Hutchinson
Brenda Bonnichsen (Aubrey’s Mother)
Dear Mr. Catt,
I am Aubrey’s mom, Brenda Bonnichsen. I want to thank you so much for putting a smile on Aubrey’s face!
We went Saturday to the Guitar Store, and Eric helped Aubrey pick out a guitar. Eric was very helpful and was so patient with Aubrey and really desired to fit her into her idea of a “perfect” guitar! He was excellent!!!
Aubrey has a piano background but for the last year has mentioned several times that she wants to play guitar. I used to play but due to some hard financial times, I ended up selling my guitar, and kept telling her that “one of these days” we’d try to get her a guitar. We were so thrilled when Allison at the hospital mentioned the possibility of Aubrey being able to get a guitar!! For her it is a dream come true!
The night we got back to the Ronald McDonald House, we happened to see the house manager. She asked about the guitar and we told her all about it. She got excited and said that she had a friend that has taught her grandson to play and that maybe he would come and teach Aubrey to play. Well, Monday she had her first lesson and I think you’d be pleased to know that her teacher was very impressed with how quickly she seemed to pick up the beginning basics. He said that most of his beginning students need, 2, 3 or 4 lessons to do what she did her first lesson. So of course, that made her smile even bigger! It amazes me how all these pieces of a girls dream have come together in the matter of a week! I will be forever grateful to you Mr. Catt and your organization for putting the tools into the hands of kids to help their creative juices flow! It is just the outlet that Aubrey needed! Bless you!! Attached is a picture of Aubrey with her guitar! She’s hoping to be able to play like Taylor Swift in no time at all!!!
- Blessings, love and appreciation,
Brenda Bonnichsen
Maj Shyam Sharma (Sneha Sharma’s Father)
My brave daughter Sneha made us proud by connecting to Blue Stars and living last phase of her life (yet in late teens) with cheers and smile. She would write to John and share with me the excitement of getting a new guitar from Rudy and Tips, on behalf of Blue Stars. She introduced me to Rudy and Tips and Blue Star Connection and took me along in music concerts by Rudy-Tips. She was very involved and passionate about designing Blue Stars Logo. Thanks John and Blue Star, for adopting the same almost in toto.
I presume, Sneha happened to be the only angel from Asia associated with Blue Stars. She was one out of initial five Blue Star Angels. Sneha, left her physical form to become a bright star beyond blue skies, on 5th May 08. She fought the cancer for more than two years, without any fear and regrets. She would jump off the hospital bed after each Chemo and even after Bone Marrow Transplant. Doctors were amazed to see her ever prepared to undergo toughest of treatment regimes with no complaints whatsoever. She would take charge of worst of situation herself, come home and play her manual guitar then try her own number on Blue Guitar. Feb 08, she realized that there was no medicine left to control spread of cancer after relapse. She knew well that her life was cut short, yet she never cried or cursed any one. She rewarded me, for all my efforts to give her the best of medical attention and mental/morale boosting support, by bidding farewell to physical body form while in my arms. She bid good by to me and her caring doctor in full senses and in clear speech in the morning hours of 5th May 09. I just whispered in her ears to come back to me once more as my beloved, cheerful and very intelligent daughter in my next birth. I am sure she will oblige me. I will wait for you my pretty Blue Angel.
I, in person, and on behalf of my family wish John and all angels of Blue Star Connection all the best and remind them that live life the way you want, every moment, regardless of distressing pain and agony that one may experience. Life journey must be enjoyed even in the most difficult conditions, like a commando and a mountaineer.
May God Bless All with Courage and Determination, as Sneha was Blessed.
- Maj Shyam
Doug Rittenberg (Tess’ Father)
I couldn’t begin to tell you how excited & appreciative Tess was to receive both the Keyboard & the Clarinet!!! She is already quite skilled at making music on the keyboard. We have a long road ahead of us for the clarinet…
Thank you so very much from the bottom of our hearts. Hope you are having a very merry Christmas.
- Respectfully,
Doug Rittenberg
Nathan, Renee & Zachary Charlan
Dear John & the Grand County Blues Society – THANK YOU!! You met us and our son on Wednesday night at Tara & Emily’s fundraiser. What an amazing event that was and such big hearts you have for wonderful people like Tara and her miracle baby Emily. We had a great time and the music was spectacular. It was an evening both my wife and I enjoyed immensely and Zachary absolutely LOVED listening to the music too. John must have found out about Zachary through Tara, because he approached us about what instruments Zachary likes to play. When we told John that Zach loves playing a toy keyboard and will do so for hours, he offered to get Zachary a professional grade keyboard through Guitar Center. We were speechless to say the least. Today, Sat. Oct. 9, we went to Guitar Center and met up with Clint who arranged for Zachary to take home a Yamaha PSR-E423!!
When Zachary got to play it in the store he was so excited he could barely contain himself. Zachary has cerebral palsy and when he’s stimulated or excited he stiffens up. It was hard to hold him to let him play the piano, so we let him stand (with support as he can’t do it by himself yet) and he jammed! Clint is a standout guy and we got the keyboard home and Zachary has been in heaven. Thank you sincerely from the fullness of all three of our hearts! You have truly touched the life of our child forever. He sat upright and balanced today while using BOTH his hands to play the keyboard, a feat which is very difficult for him because of the Cerebral Palsy, but one which he was so motivated to do because of the keyboard. We recorded the entire experience and took lots of pictures. We would love to send them to you! Thank you again and we hope to hear from you!
-Nathan, Renee & Zachary Charlan