Below are words of gratitude from the family of the first room A Room to Heal, Inc. completed in January 2006. The room was for two boys within one family, Austin (age 8) who was undergoing treatment for Acute Lymphocytic Leukemia and his younger brother Joey (age 5), who was suffering from ongoing seizures due to an Inoperable brain mass.
Written by Evelyn, mother of 5 children: Dealing with the illness of our children left us financially and emotionally stressed. When Laurie approached me about
When I look at the pictures of everyone working together as well all of our children playing together I am reminded of how deeply your kindness touched our lives
From Austin: The first thing I remember is feeling amazed when the door was opened. My favorite thing in his room is our battleship carrier desk. I also like looking at the painted jet fighters on the wall coming in for a landing.
From Joey: I love lying on the bed and looking up at the airplane ceiling fan watching the propeller spin while I make airplane noises, but my favorite thing is looking at the photo album you made for us with the air show pictures!
A Room to Heal volunteered to help family and friends with the bedroom of Jeremy Hadley, a 20-years-old young man who lived in Horseheads, NY. Jeremy suffered from Hodgkins Lymphoma, had 2 bone marrow transplants, both of which were unsuccessful. In Jeremy's home, volunteers from Excellus and A Room to Heal created a warm and healing bedroom suite where he could be comfortable with his family and friends. This project was funded by Excellus - Blue Cross/ Blue Shield.
This testimonial was written in early March 2007, a few weeks before Jeremy passed away peacefully in his bedroom. It is written by Amelia Sauter, Jeremy’s case manager and friend from CompassionNet, a branch of Excellus.
Written by Amelia Sauter:
Here's some testimonials from the family regarding Jeremy's room makeover, with some quotes from Deb, Jeremy and me. As you recall, before the makeover, Jeremy was living on his own in an apartment at his girlfriend's parents' house.
Immediately after the room makeover, Jeremy told me that he felt like he now has a peaceful place to call his own, and he said he felt like he could now come home to live with his family. He said the room was the best thing that had happened for him. Debbie said that as Jeremy has gotten sicker, having his own room that was set up for visitors has brought him closer to his friends and created a peaceful, comfortable place for his friends to visit. She said it is now a warm, cozy room where he and his friends can watch movies, or he can lay on the couch or sit with his feet up in the stuffed chair. Debbie said that having the room makeover was unbelievable and that it made the biggest difference at the end of Jeremy's life.
Jeremy and Debbie have both used the word peaceful dozens of times in describing the effect the room has had on Jeremy and the family. While the room makeover was a concrete project that created a beautiful space, I also think it was very symbolic for the family. It was truly a catalyst for them to choose to create the peacefulness that they are now appreciating so much, to spend more time together and to make transforming choices about their relationships with each other at such a pinnacle time in Jeremy's life. It is not an understatement to say that the room makeover
I also wanted to let you know when Jeremy passes away, one of the places that Debbie is going to request donations be sent to in Jeremy's name is to Room to Heal. That's how much this room makeover has touched their lives.”
Luke Zuber is a 13 year old middle school student in maine Endwell, New York. He was diagnosed with a brain tumor when he was 3 years old and underwent successful treatment at Boston’s Children’s Hospital. The tumor was gone… until this past year. In Luke's home, we created a recreational room as a healing environment for he and his brother in November/December 2006. This project was sponsored & funded by a local company, Professional Home Care.
Written by mom, Kristy Zuber:
The phone call came from a colleague and friend one evening. She asked if I had ever heard of the charity called “A Room to Heal.” She explained that her husband’s company had been fundraising for about a year and wanted to sponsor a room for a child. They had seen an article in The Press & Sun Bulletin about Luke and his battle with cancer. They thought that he would make a great recipient.
Next came the calls and visits from Joe. He was so into the project that he made us all feel like family. He interviewed both Luke and his brother, Jake, to find out what their interests were and what they thought they might like in their room. The first visit was just before Thanksgiving, 2006. Luke had just returned home from the hospital after surgery and intensive inpatient rehab. He was still unable to make it through a full day of school. The boys both felt very comfortable sharing their ideas with Joe, and before we knew it, a plan was in place.
The first crew of volunteers showed up one (thankfully warm!) Sunday afternoon to clean out the garage. The amount of work that was accomplished in one day was amazing! We had piles and piles of garbage at the curb, new shelving in the front of the garage, overhead storage in the rafters, and a chalk-line of the room-to-be.
The contractor and his crew, along with the electrician and his crew, came next. They worked for less than a week on the construction. By the time they were finished, we had insulated walls, a drop ceiling, recessed lighting, a new door and window, and a propane heater. The volunteers came back to spackle and sand, and spackle and sand, and then spackle and sand one more time. This was about the time that they introduced us to the ladies.
Linda and Laurie came over one evening in early December. They wanted to meet Luke and Jake so that when they started decorating the room, they would know who it was for. The boys warmed up to the ladies very quickly and gave them great feedback. We had a great visit!
At this point, the room was closed off to us. It was like being on a special TV show where they remodel your home while you are away and then surprise you when you return home. As we continued getting used to school again, as well as going to many therapy sessions, people would sneak into our garage and make progress. They painted, carpeted, hung window treatments, and furnished the room. They added pictures and shelving around the room that made it very personalized. Our favorite is the Jon Bon Ed Fed caricatures of the boys. They are perfect!
Less than a month after we first heard of “A Room To Heal,” our new rec room was unveiled to us. As we were dealing with an ongoing bit of turbulence with Luke’s recovery, we ended up seeing the room one day early. Luke was on his way back to the hospital in Boston for more testing after an unexpected regression. Linda and Laurie kicked it up a notch to get the room ready before we left. All I could think about was that if Luke had to go through a lengthy stay in Boston, then at least he would have a visual of the amazing rec room waiting for him back at home. I knew that it would give him the strength he needed to get through whatever was ahead.
Thankfully, we didn’t end up in Boston for very long, and we were able to return home to spend time in our new room. The boys love the foosball table, the futon, and the X-Box 360 best. They spend many hours with friends, with each other, and on their own, enjoying the gift that was given to them by an amazing group of people.
In December 2006, 7 -year-old Macey King was diagnosed with Ewings Sarcoma cancer. She was treated in Syracuse at The Center for Childhood Cancer and Blood Disorders at Upstate Medical University Hospital. Macey lives in Vestal with her parents and four brothers.
Written by Macey's father Scott King:
When first approached by A Room to Heal, Inc. requesting to create a healing room for Macey and all of us, my first thought was influenced by my pride. I thought, I don't need someone to come in and redo a room for us and not charge us for it. I can pay my own way. But after further requests by A Room to Heal board member, Linda Salomons, my wife and I discussed it further. We decided that this wasn't about our ability to pay for this, it wasn't about us at all. This was about our daughter Macey who was suffering from Cancer. With that perspective in mind, we finally conceded that it was a wonderful idea and we would gratiously accept.
Then, it got exciting. All of my children were going crazy with anticipation to see this new healing living room. Kim and I were also getting excited, as we had no living room for the whole week.
Then came the Big Reveal. There was nothing more fulfilling then watching the look on Macey's face as she noticed all of the changes to the room. The room itself was beautiful, but what really meant the most to us, was seeing Macey smile. I knew then that healing would take place in this room.
Our family of 7 has been living this nightmare for 10 months. It has taken it's toll on every single one of us. How amazing it is that A Room to Heal, Inc. came into our home and helped us through this nightmare.
It is apparent to us that God is at the center of this action.
In July 2007, A Room to Heal was approached by a CompassionNet Case Manager in the Utica area. She was working with a 12 year old boy who was diagnosed with Rhabdomyosarcoma and was dying. Aviano's mother had shared that they were in the process of redoing his room before he became sick and now there just isn't time to work on it because the attention is needed with his illness.
Written by Laurie Fazekas BS, CCLS Case Manager for the CompassionNet program:
Aviano lived in his mother’s home with 7 sisters. His mom, Rochelle, had redone many of the rooms in the home for his sisters, leaving Aviano’s room last to be done when he was diagnosed with alveolar rhabdomyosarcoma. As he became sicker his room wasn’t the most peaceful place for him. It was crowded with toys he no longer used and painted in primary school-age colors. He began staying in his mother’s bedroom. As he continued with his treatments however, he began to question his mom. When was his room going to be redone. At this point, however, with the financial strain of Aviano’s illness, Rochelle could no longer afford to redo the room. Rochelle came to me and asked if CompassionNet could find a way to get them at least paint or something, and I went in search of assistance from Rooms to Heal. Laurie came to visit with Aviano on a day when he wasn’t feeling well, but she brought some goodies and great conversation so Aviano really enjoyed his visit. They discussed the room and it was decided that Aviano wanted a room that was ALL blue with pictures of his favorite movie actor in the mix. The group of volunteers that came just a brief time later were wonderful. They were kind, hard workers, and sensitive to the family’s needs and situation. They completed the entire room in a day, a magnificent feat. In the end when I spoke with Aviano about his room and showed him Polaroid pictures of what had been done, he turned to me and said “Is it really all blue?” with a smile on his lips and in his eyes. Aviano passed away a couple short days later, but Rochelle has said that the room has become a place for her to find peace and remember Aviano. Rooms to Heal is a magnificent program and I feel honored to have been a part of what they are doing for children who really need a healing space and a moment of joy and serenity.
Written by Mary and Scottie Knapp:
My son, Scottie, has an uncontrollable seizure disorder called Dravet Syndrome. His first seizure came at 4-months of age. Currently, he is having about 30 grandmal seisures a week. Scottie requires 24-hour care due to loss of congitive skills. Due to his syndrome, he can not tolerate climate changes. His learning skills are severely delayed. Scottie has asthma and autism as well. Being a single mother, and trying to provide home modification to make his life easier and safer, was extremely difficult.
A Parent Advocate referred Scottie to A Room To Heal. I received a phone call by a woman named Kara from A Room To Heal. From there, we set up an appointment and I met another woman Nancy when they came to meet Scottie and I. At first, we thought they were just arriving at my home to help Scottie with a air purifier for him room due to his asthma. After our meeting and lenghty conversation, they decided that they could help Scotties room a little bit more, and asked if they could take their suggestion to their board for their approval. A blessing came about, and his room was approved. The volunteers first asked what Scotties needs were in this proposal. From there, before the project was started, and with Scotties illness, we agreed that Scottie should not be around the remodeling. They were able to put us in a hotel for 2 nights and 3 days so we could be safe during this remodeling. The hotel room was beautiful along with handicapp accessible needs.
On the 3rd day we arrived at my home, approached his room and I felt as if it was new a beginning. Scotties room was beautiful and peaceful. As I was approached his room, I noticed a custom-made safety gate which covered his door so Scottie can be protected in his bedroom. Peaceful fish designs were adhered to his bedroom walls. Due to the age of the windows in his room, A Room to Heal secured The Window Broker to come to my home, measure my windows and supply me with the donation of new windows, which included the cost of labor. Scotties room also got brand new carpeting, thermal curtains to keep the sun and cold out, an air conditioner for his window during those hot summer days, freshly painted walls, a ceiling fan to keep the air circulating, a 5-gallon fish tank with 2 fish that we have named Kara and Nancy, rope lighting to illuminate his bedroom and a recliner chair so I can comfort and rock my son during his seisure activitys. There was also a TV and VCR mounted on the wall with the cord covered so my son could not pull the cords or entangle himself. A new dresser was also mounted to the wall so Scottie can not tip it over, and a few activity boards were there for Scottie to keep him busy (a suggestion by his therapists). A Room to Heal also purchased him a toy ball crawl that they placed in the corner of his room.
Everyday as I approach his room, I feel that A Room To Heal has provided comfort and safety to my son. At this time, I would like to say Thank you to Kara and Nancy, The Window Broker, The Electrican, The Holiday Inn on the Vestal Parkway, Home Depot and everyone else that put there time into his room. God Bless You!!
Written by The Koster's:
I was first approached about A Room to Heal by Amy Abbey, a mother of a child that we met up in Syracuse Hospital on the cancer wing. Amy asked if she could send Leon's name into A Room to Heal. I said sure, not really thinking she would. Then I received a call from Joe Cerra, asking to come meet with Don, me, and Leon. Joe and Ron (project coordinators from A Room to Heal) came out to talk to us. At the time Leon shared a room with his brother Donnie. Ron and Joe asked Leon what he liked and gathered other information about our family.
After that first visit my husdand and I talked and we were kind of uneasy about having someone do this big of a gift for our son. We felt we should be able to pay for this on our own! Then the call came from Joe and he said clean that closet out, and I started crying. I just couldn't believe there were people out there that cared that much about a child with cancer. Then we came up with a list of volunteers that would want to help. From there it was like a dream come true. They cut a hole in the roof of our house, put a dormer on, and then started framing the room and putting windows in. Numerous volunteers helped do sheetrock, do electrical stuff, run pluming for heat, paint, put flooring down, build a closet, and furnish the room with things that our son Leon loved.
When the room was revealed to our family and Leon, it was beyond his wildest dreams.The first night Leon fell asleep by himself in his new room -- that was a big surprise for my husband and me because usually Leon had to have one of us lay down with him at night, But he was so comfortable in his
We would just like to thank everyone who helped make it possible for Leon to have this wonderful room. And we want to let Room to Heal know how much we love them!!!!!!!!!!
What “A Room to Heal” did for me
When I found out that I was getting my room basically remodeled by “A Room to Heal,” I was like cool I’ll get some new furniture, maybe a new regular sized bed, but after I saw what they actually did for me was AMAZING! I had asked for a TV and a computer and a big bed, but I was thinking they were just going to give me maybe one of these things that I asked for. They gave me ALL three things which just blew my mind! When I first walked into that room I was amazed by everything. There was a big bed, big TV, laptop, the colors lime green and orange, which are my favorite.
You guys went above and beyond what I was expecting and it was awesome! Having my own computer is great because I can take it to class and take notes, or not have my little brother on my main computer so I can’t do any school work. Having a big TV is awesome too, watching the games on the big screen and not having to squint to look at 13 inch TV. The new room has helped me kind of be my own person and to have a place to just relax, like in my amazingly comfortable LazyBoy chair.
Overall the room has been awesome! It has been a place to get away, even though I am still in the house. I can go there and relax and talk to friends on my laptop or do homework in peace. So I Just want to say thank to everyone who helped put this amazing room together for me, along with all the support that came with it!
Written by mom, Elizabeth:
When we were first approached by Linda about the possibility of a new room for Alex, we were filled with so many emotions; would this room really improve his life? We were all well aware that the house was small and very crowded with Lego's and toys. We have always known that Alex is a fine motor child, the only problem was the lack of space for him to spread out and build Lego's with his very talented hands. The reveal of the room was amazing for all of us, we all love to see Alex smile and laugh. The room has had many visitors since the big reveal and Alex plans on keeping the room filled with Lego's, family, laughter and friends. Thank you A room to heal for making Alex's life brighter, we will never forget your kindness.
Alex's own words:
I love my new room. My mom and i can play Lego's together now. Yoda watches me play. All my stuff is right in my room and my mom doesn't need to clean all my Lego's up to eat dinner. Thank you for my room, it makes me feel happy.
Written by mom, Catherine:
Dear Room to Heal (and its volunteers),
From the bottom of our hearts - thank you. Thank you for teaching us that there are many, many good people in the world. The room for Mason is absolutely amazing! We want to tell you that we had no idea how much Mason's room was going to impact our entire family's quality of life. I still walk in the room every time with amazement... it just fills my heart with joy.
Thank you so much. Truly, it changed the atmosphere of our family home as a whole. The room for Mason sparked a necessity for us to finish the other bedrooms for all the kids. Aside from that -- Mason, and this is the best part of the renovation -- has been sleeping like never before. With the machines behind a sound proof room, the extremely comfortable mattress, the love that surrounds him on every wall -- everywhere you look inspires happiness, healing, and peace.
Thank you, Thank you. Thank you. Your organization is wonderful. I pray that it continues to grow and achieve your mission ten-fold! My husband and I would like to get involved with your rooms to heal. He has skills and tools. I have some construction experience and design. Although, you are thinking Laurie, that we are busy -- everyone is busy... So, let us help you -- give us the opportunity to help in some way -- to give back -- to be part of another family's joy.
We love you all and invite you to our home anytime to visit and share Mason's room, again and again. He will and we will be enjoying it for years to come.
With hugs from our family,
Written by Rosaly:
When I first walked in to the room, I was filled with joy. Since I was diagnosed with Lymphoma, I wasn't myself anymore. I was always quiet and couldn't sleep in my room. So I had to sleep in my parents 'room, but since the makeover, I feel like now I have a place to relax and feel comfortable in. My room use to be cold and my bed became short because I grew so much, but now it's a peaceful, relaxing and a comfortable place. My favorite part of the room is the words on the walls, my sisters’ heart, quilt, and painting and how long the beds are. This experience has brought a smile to my face and I want to thank everyone who contributed. Thank you so much and God bless all of you.
Written by Lydie (Rosaly's 14 year old sister who shares the room):
The day I saw Rosaly leave for Syracuse after a phone call, from the doctors, I knew something was wrong. Then when we found out that she was diagnosed with Lymphoma. I knew she wasn't going to be the same. Our room is a place where we usually go to relax. But it wasn't that comfortable. In the winter it got cold. And sometimes you could feel the breeze coming through the door. In the summer it gets way to hot.
When Room to Heal got offered to us, all I could think about was Rosaly. That day Linda and Wendy and Angela started to talk about the process for what Rosaly wanted in our room, I saw a glow on her face. But when the revealing of the room took place I was so happy and couldn't stop smiling. When I looked over at Rosaly her happiness spread through the room and she didn't stop smiling. I had never seen her smile so much. This experience has made her laugh and smile again, it was just the thing that she needed. We don't feel the breeze in our room anymore; we have great lighting, paintings, colors, quilt, etc…. And it is very cozy. We spend most of our time in there. THANK YOU ROOM TO HEAL AND ALL OF THE VOLUNTEERS!!!!!
Written by Ally:I was excited when I heard that I was going to get my room done by A Room To Heal. I spend a lot of time in my room and it means a lot to me. Before, my room was covered with posters of my favorite bands that were covering the ugly wallpaper. My carpet had stains all over it, my mattress was on the ground. I just never felt like the room was me. After the volunteers from A Room to Heal came, and when I opened the door on reveal day, I couldn't believe my eyes. Everything was amazing. I finally got a new bedframe with a beautiful bedding. They had also captured the theme I was going for, which was New York City and music. There is this giant poster of Times Square next to my bed, which is one of my favorite places in New York, and its amazing. They gave me a huge deskspace and bookshelves which both were definitely needed. I would just like to thank A Room To Heal again because they captured me in the room, they really did.
Written by Ally's mom, Eileen Klein:
Room to heal, what an amazing group of special people. When Allyson's room was being worked on it was so amazing to see all these people coming and going all this hard work for my Allyson. We have had so much pain and heartache in the past 6 years dealing with her cancer, to have her room done just for her, and it was all her, every part of the room, you captured Allyson perfectly. She lives in her room especially when she isn't feeling well, now I can't get her out of there, she has everything she needs, she can talk with her friends, do homework, get onto Facebook and Twitter It was just amazing when we first walked into her room, it looked so much bigger than before and everywhere you looked something was new,something special, it brought tears to my eyes. You made a special difference in her life and I can't thank any of you enough for that. We would like to be part of another childs room, what a good feeling that would be for us.
Written by Miranda:
I was excited when I was told I was getting my room made-over by "A Room To Heal". I had never really spent much time in my room. It was just the place where i slept and put my clothes. I kept thinking "what are they going to do with such a small room?" I was thinking they would just do some simple things, then they shocked me! There is so much space now! The room is beautiful and I can actually hang out with my friends in my room and relax. They gave me a laptop, a TV, a lot of shelving space, a desk, and a bed of course. I spend a lot of time in here now and it is just so amazing what they did!
All of the people and volunteer workers were so nice. They all did a great job and spent a lot of time and thought putting my room together. I'm very thankful that this was done for me, and it has really helped me feel like I have a place I can just get away to. They have made it such a comfortable and warm place for me. Thank you "A Room To Heal".
Written by his parents:
Dear Ann and Carol,
I would like to take a moment to thank you and all of your decorating angels for their wonderful work done for our family.
When Abrahm was diagnosed in December of 2009 after a month of dealing with a lot of pain and doctors visits, the last thing on our mind was taking care of household projects. I will say there were many. While we were in Boston and then to Syracuse for diagnosis and beginning of Abe’s treatment, we had to recognize the need to make things easier and for Abe during his treatment. We had family and friends come to our home to help us while we were away. They did a wonderful job switching Abe’s room closer to my wife’s and mine room in order so we could hear and help Abe when he needed it. There was still much more to be done and I didn’t know where to begin. Then I heard about a Room to Heal through Gollisano Children’s at Syracuse Upstate Medic al Center. And we were referred to you by Compassionet Services.
You came to our home and asked what problems we were dealing with such as organizational space and usage. What are Abe‘s likes and so forth. We were also asked what could be done for the family. This was asked of us so your group can make a place where Abe and the family can have more comfort.
When Abe and I were out in Oklahoma for his radiation therapy at Procure Proton Center your group came out and did their magic beyond my expectations. You made Abe’s room a true room to heal in and the family room a place for the family to come together and enjoy sharing time there. My wife and I are so grateful and humbled that there are people that reach out to help others in their time of need. We know as a society that people come together at times of need but often it’s not seen or felt on such a personal level. Abe and our family would like to thank you again for your caring time.
With Love from our hearts,
Eric, Beth and the Freeman Family
Written by Megan's mother Molly:
My daughter's journey through cancer ended in December 2010. She had undergone very extensive surgery in September, followed by four rounds of chemotherapy at Memorial Sloan Kettering Cancer Center. In some ways, the time AFTER treatment was harder for me to endure than the treatment itself: at least during treatment we were DOING something, and had the support of doctors. nurses, social workers, etc. I found myself floundering, trying to figure out where we stood: She was healthy, but still being monitored closely; we were back to "normal", but "normal" was different. My energy level was almost non-existent, my brain seemed to be sucking up every bit of it for worrying, wondering, and processing the intensity of the experience. I was changed, we all were, by Megan's cancer.
I sought out another Mom nearby who understood. Her son had survived leukemia, a brain tumor, and was now fighting one again. We spent time walking, talking, venting, encouraging, analyzing, and yes, laughing sometimes! She spoke to me about A Room to Heal and what a great job they did re-doing her son's room. I wasn't interested. Megan was healthy, after all. I was trying to move forward, not back. I felt guilty about using this service when there were others more needy than we were. But Beth was relentless. After many discussions about it, I finally gave in to the idea that I could accept help, and began the process of applying to A Room to Heal.
Of course, the results are stunning! Megan is absolutely thrilled and so are we! Thank you Yvonne, Lauraine, Rob, Joy, Dan, Leslie, Beth, Zach and the many others who worked so hard on our project. What a beautiful, cozy place for Meg to spend time in, with her sister, her friends, her music, her homework, whatever!
Lessons I've learned: I have learned that it is okay to accept help from others. I have learned that it is okay to admit that I can't do everything myself. I have learned to accept that what Megan went through, although not as lengthy a treatment period as others', was traumatic. I have learned to be patient with myself. I have learned that many people want to help in some way. I have learned that I need a community of people who understand this experience. Thank you to A Room to Heal for providing me with these connections and to my friend Beth, for guiding me along the journey.
THANK YOU A ROOM TO HEAL!!
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