Little Ray's Battle Fund
Please look for further information to come shortly about our fundraising event as we kick-off our renewed fundraising goal to continue to off-set expenses.
A Taste of the Towns: A Fundraiser for "Little" Ray
Tuesday, April 25, 2017 @ 6:30pm
Hosted at St. Luke Church, Long Valley, NJ 07853
Suddenly and without warning, Little Ray McCarthy, our spunky and adventurous six-year-old Star Wars enthusiast, finds himself battling an alien creature called Glioma. Glioma isn’t an imaginary character in a fictional galaxy on a movie screen. Unfortunately, it is a very real and very devastating brain stem tumor, medically known as Diffuse Intrinsic Pontine Glioma (DIPG).
According to the St. Jude Children’s Research Hospital website:
"DIPG is a type of tumor that starts in the brain stem, the part of the brain just above the back of the neck and connected to the spine. The brain stem controls breathing, heart rate and the nerves and muscles that helps us see, hear, walk, talk and eat. These tumors are called gliomas because they grow from glial cells, a type of supportive cell in the brain.
DIPG falls into the Glioma staging system, so they can be classified according to the four stages below based on how the cells look under the microscope. The grades are from the least severe to the most severe.
• Low Grade: Grade I or II means that the tumor cells are the closest to normal.
• High Grade: Grade III or IV means that these are the most aggressive tumors.
The main issue with DIPG is that most of these tumors are not classified by grade because surgery to obtain tissue by biopsy or to remove the tumor is not safe because of the location of the tumor. When these tumors are biopsied, they are usually grade III or grade IV tumors, which tend to behave very aggressively. Most of the tumors are diagnosed by their appearance on MRI."
More information about DIPG, including treatments and symptoms, can be accessed at: http://www.stjude.org/stjude/v/index.jsp?vgnextoid=b86c061585f70110VgnVCM1000001e0215acRCRD
Since the initial realization by his wonderful teachers at High Bridge Elementary School of an eye twitch and the subsequent diagnosis of his brain tumor, Little Ray’s parents, Ray and Amanda, have been valiantly and tirelessly helping their son fight this epic battle by performing research, conversing with noted neuro-oncologists at leading medical centers across the nation, reviewing clinical studies, while at the same time providing him with all of the love, warmth, and normalcy in this world.
We are praying for him, as well as reaching out to our communities, religious and local, for your support and prayers.
On Friday, March 13, 2015, Little Ray was hospitalized at Robert Wood Johnson Medical Center in New Brunswick, New Jersey. On Wednesday, March 18, Little Ray and family traveled to Memorial Sloan Kettering Cancer Center in New York City for an evaluation. On this gofundme website, we’ll update you on his progress, further evaluations, and future encouragements. So, please check back often.
In the meantime, this wonderful family, including younger brother Liam, need not fight this battle alone. That’s why we are asking you to become a "Jedi warrior" for Little Ray by praying, sharing his story (please consider reposting via social media to help us get the word out), and donating whatever amount, no matter how big or small, to this account to help defray expenses related to his medical care.
Please become a part of the Little Ray Empire and strike back at Glioma today!
Our Lady of the Mountain, Long Valley
St. Luke Parish, Long Valley
St. Mark the Evangelist, Long Valley
St. Lawrence the Martyr, Chester
Stanhope United Methodist
1st Presbyterian Church of Iselin
When I reflect on the past year I do remember the diagnosis and the time at the hospital. Unfortunately I remember every detail of those days. After the initial shock was starting to subside I remember the hunger for information. Endless research, phone calls, emails, meetings with doctors, etc. We were not accepting the opinion of the first doctor who told us there is nothing we can do and that nothing will change the ultimate outcome. I have to wonder if it was my guardian angel or his that protected him that day. I say thank God that doctor was such a useless idiot. Perhaps if he were more convincing we would have submitted back then and stayed in the hospital. Instead we told him we will agree to disagree and that he made it painfully obvious are treatment options were not at that hospital. We were out of there the following afternoon.
Needless to say we found a great team of doctors at MSKCC who, instead of saying, "Give up", said "Here are our options". We quickly assembled a team of top doctors in the field and who were engaged in some promising research. In addition to the folks at MSKCC we teamed up with great doctors in the fields of nutrition, chiropractic care, Chinese medicine, physical therapy, herbal medicine, as well as a faith healer and an energy healer. No stone unturned we say.
To summarize our past year Little Ray enrolled in two clinical trials involving a catheter inserted into the tumor where a monoclonal antibody tagged with a radioactive isotope was delivered. In addition, the second procedure was performed without steroids to potentially allow his immune system to attack the tumor cells marked by the antibodies.
We also started a new targeted drug that is showing promise in both in vitro and in vivo studies. Since this drug can affect the heart and blood cell counts, Ray is being monitored weekly. His EKG's have been stable and his blood work has been fairly good. We are seeing lower platelet counts so we are making diet and exercise adjustments to help increase these numbers. Of course there are plenty of doctors out there stating diet and exercise can't affect platelet counts but we're trying it anyway. The drug is prescribed for use three weeks on and one week off. This was our first off week before starting another cycle on Monday. The idea being that the body can recover somewhat during the "off" week. We go back to MSKCC tomorrow for more blood work and to make sure the platelet counts are such that we can start the next cycle.
Little Ray continues to do well although the steroids caused him to gain 17 pounds in under seven weeks. The bloating, weight gain and large amount of water retention are still noticeable. I believe it is also making some of the neurological symptoms more pronounced. To help combat the side effects, Ray has been going to acupuncture and physical therapy and he is getting more exercise. We also make adjustments to his diet and supplements to help shed some of the water weight and extra pounds.
It is a never ending struggle with enough ups and downs to make one dizzy, however overall we are very grateful to see Ray participating in scouts, swimming on the weekends, continuing with his school work via home tutoring and playing with his brother and his friends. I have to say he takes it all in stride and other than the numerous visits to doctors he leads a very normal and happy life. He has a lot of big dreams for a kid, everything from being a billionaire, to opening a restaurant that gets featured on "Diners, Drive-Ins and Dives", to being a scientist or engineer, or an explorer and treasure hunter. We feel it is our job to make sure he fulfills those dreams. I pray and hope that one day we can reflect back on this nightmare we've been living for the past year and realize how it strengthened us; strengthened our family, our friendships, and our faith. I also hope and pray that once cured, Little Ray only knows of a time during his early childhood when he was inconvenienced just a bit in an effort to cure an issue with his eye. Let's all pray for another year filled with joy, health and miracles.
~ Ray McCarthy (Dad)
After several weeks of waiting, we are now heading back to MSKCC for follow up imaging. Tomorrow morning we get to see what effect six weeks of radiation, a cancer fighting diet, an arsenal of supplements, positive attitude, and the power of prayer had on the tumor. This will be the first time images are being taken since the diagnosis back in March. To say I am nervous would be a gross understatement of the facts. I cursed this damn tumor for over twelve weeks now and I still have a hard time talking about it in the same sentence with Little Ray. I find myself referring to it as “the tumor” and not “Little Ray’s tumor” because I’m praying it is only a temporary unwanted guest who has already outstayed its welcome. Ray is doing great by-the-way. He looks great, feels great, and his energy levels remain in the “tough to keep up” category. His eye movement improved to the point where it would be difficult for anyone to notice. I remain cautiously optimistic that things are heading in the right direction, however only tomorrow’s images can confirm my observations. I’m also not fooling myself; I know radiation was only the opening salvo and we still have a war to win.
Ray has to be at MSKCC by 10:00 AM to get prepped and consult with the anesthesiologist. Unfortunately Ray must be under anesthesia for the MRI. This will ensure he remains still for the 45 minute procedure so we can get clear images. The MRI is scheduled for noon and at some point we will meet with one of the three doctors involved with the study. I am preparing for a long day in NY. I am not a big fan of the city and certainly not under these circumstances. In addition to finding out what is going on with the tumor we will also find out if Little Ray is eligible for the clinical trial. Tomorrow is a very important day for us.
These updates continue to serve as therapy for me, to help organize my thoughts, and to keep our friends and family in the loop. Please indulge me while I selfishly make part of this update about me. A few weeks back, after Ray completed his treatments, I reentered the workplace not knowing what to expect. I remember worrying excessively on the ride down to our office; wondering what people would say to me or how they would view my situation. I envisioned a lot of somber faces and perhaps uncomfortable conversations about Little Ray and his condition. I was almost sick as I pushed open the door that morning. “Here it goes” I thought, I knew had to face it sooner or later. I arrived early which was good because the office wasn’t busy yet. This allowed me to ease into the day and test the waters. I even thought I may be able to blend in and nobody would notice. It felt weird being back and my thoughts were obviously back home with Little Ray and Liam. Despite all of my worry and concern over facing coworkers for the first time in nearly 8 weeks I was shocked I could be so wrong. Everyone greeted me with a smile and words of encouragement. The day turned out to be a very positive and uplifting experience. I can honestly say the entire company rallied behind my family’s fight in an unbelievable show of force. The gifts, donations, words of encouragement and, most of all, prayers were offered up in short order. People who only knew me by name and through my updates on the website made a point to stop by and offer prayers and help. I always say there is something to be said about living in a small town community. There is something to be equally said about working for a family run business that takes care of its employees. From the first phone call I made at the hospital when we got word of the diagnosis, I was assured I had the company’s support. In fact, my seventeenth anniversary at the company nearly coincided with the start of Little Ray’s treatments. I am not alone either. I had subcontractors ask me on several occasions if anyone worked for Torcon less than 15 years. This speaks volumes about the culture of our company and the Torcivia family in general. I am truly grateful to be part of such an organization. With the support my family is receiving from so many people who touched our lives, we couldn’t be more prepared to lower our shoulder into this fight! We are truly blessed.
I found this daily reading on Catholic Online:
Monday, June 8, 2015
Second Corinthians 1:1
Paul, by the will of God an apostle of Christ Jesus, and Timothy, our brother, to the church of God in Corinth and to all God's holy people in the whole of Achaia. Grace to you and peace from God our Father and the Lord Jesus Christ. Blessed be the God and Father of our Lord Jesus Christ, the merciful Father and the God who gives every possible encouragement; he supports us in every hardship, so that we are able to come to the support of others, in every hardship of theirs because of the encouragement that we ourselves receive from God. For just as the sufferings of Christ overflow into our lives; so too does the encouragement we receive through Christ. So if we have hardships to undergo, this will contribute to your encouragement and your salvation; if we receive encouragement, this is to gain for you the encouragement which enables you to bear with perseverance the same sufferings as we do. So our hope for you is secure in the knowledge that you share the encouragement we receive, no less than the sufferings we bear.
Thank you all for your continued support and prayers. I only ask that you make Little Ray a special intention in your prayers tomorrow and that we may have a miraculous outcome.
Ray McCarthy, Sr.
Today I am writing with mixed feelings. On one hand Little Ray finished up his last radiation treatment on Friday. On the other hand our familiar routine of the last six weeks is over and we begin to prepare for the next phase of treatment.
Ray’s proton beam therapy went as well as could be expected. With only a couple of exceptions he did not get nauseous, his energy level remained through the roof and he maintained his weight. In addition, there is a marked improvement in his left eye’s range of motion. His left eye tracks nearly all the way to the left whereas before the start of treatment it went approximately halfway before stopping.
His last day of treatment was definitely memorable. The morning started out like all others; our early morning ride to Procure, a quick coffee in the waiting area, some light-hearted joking between Ray and the staff, then onto the table for his treatment. Afterwards, Tina, one of Ray’s techs, escorted Ray back to the small waiting room near the proton therapy room. Normally Tina would follow up with a hug for Ray and notification of the next day’s treatment time. Not today; there wouldn’t be any other treatments. We had to say goodbye to our friends we got to know so well and who comforted us through the process. Each day Ray received treatment he got to pick out a bead to create a necklace (radiation treatment beads glow in the dark). On the days Ray wasn’t feeling well he would get a courage bead for braving treatment anyway. Special days, like his birthday he would get other special beads. When little brother Liam accompanied him, he got to pick out beads as well. Friday completed his necklace with a “signature heart bead” and a medal for completing his treatment. Ray’s medal number is #1275. Ray posed for a quick photo op with Tina before heading out to the main waiting area. When the door opened we heard applause and the theme song from “Rocky” playing in the background. The staff and the patients were all standing and applauding for Little Ray. Ramone, Ray’s other technician grabbed a wagon and paraded Ray around the large waiting area while everyone continued to applaud. We got to know some of the other patients if only by recognition but they felt like friends to us after spending our mornings together every day for six weeks. Of course this Dad got video of the whole thing. He also got to keep his treatment mask which I will admit to those following this post, is somewhat creepy. It still has the Darth Vader paper mask attached to it although somewhat wrinkled and tattered at this point. I’m sure Ray will keep it among his trophies and other mementos he acquired along the way. I pray that he will one day show his kids the mask explaining the crazy voyage he endured as a 6 / 7 year old. On the ride home it began to hit me, we were entering another period of unknowns. As odd as it may sound I grew accustomed to our routine and it became a comfort of sorts. Ray was actively receiving treatment to help stop the tumor and that was a good thing. Now we wait a few weeks before going for additional imaging at MSKCC. Waiting is the worst. When we got home we decided to take the kids to one of their favorite local play spots, Giggleberry Fair at Peddler’s Village. Think of it as a three story habitrail for kids while you have the opportunity to shoot foam balls at each other from air cannons. They had a great time!
In the days that passed since finishing radiation my mind has been all over the place. I can go from being happy to a deep depression to absolute anger in the matter of moments. Some of the original feelings experienced at the diagnosis are beginning to resurface. I look at people’s faces when I tell them about Ray and I can see from the expressions, a sort of pity. I have come to hate this above all else. When I explain that we are counting on our faith and alternative/complementary medicine to beat this I’m not convinced others believe as I do. A quick internet search will tell the bleak story in a paragraph. Sometimes I start to question “why should this be any different?” Every parent going through this or that has been through this in the past thinks their kid is special. I read every blog I can find where others have been down similar treatment paths, most with no success. I will spend countless hours, days, weeks, trying to find the one success story, the one miracle. When I start to feel depressed or hopeless I pray even harder and I hug that little kid even tighter. I have to keep telling myself Little Ray will beat this! In fact he will kick its ASS! Is this foolish optimism? I don’t this so. Sometimes I start thinking “what will the next year bring?” I try to never let a negative thought enter my head. We live life to the fullest with our kids but we live it as warriors who are intent on coming out victorious in this fight. I see a future that is bright where both of our kids go on to live long heathy and happy lives. After conveying my woods of hope and optimism to one of the doctors at Robert Wood Johnson she said, “Let write papers about him (Ray)”. Whether or not that was said as lip service or if it was heartfelt I don’t know. What I do know is that Little Ray is special little kid and he is a fighter with a great team in his corner. I pray for a miracle every day and I know God is listening. Please continue to pray for our “Little Miracle.”
Amanda and I thought it would be a good idea to have wristbands made for “Little Ray’s Army” to “BEAT DIPG!” This would be a show of unity for all of the soldiers in Ray’s army and a way of thanking everyone for the unbelievable support. We got Little Ray in on the design process so these things are going to be wild. They will definitely stand out in the crowd, much like Little Ray himself!
Thank you again and God bless,
Big Ray, It has been several years since we worked together, but I want you to know that you and your family have been in my prayers since I learned about your son's battle earlier this year. I pray that the treatments are going well and that you and your family remain strong during this fight. Best Wishes, Brian Derasmo
Good morning, I hope today is a big day for Little Ray, as it's "May the Fourth be with you"! We are trying to help with the food "experiments" that work for the whole family but have only made desserts so far, maybe you can let Brian M know what type of dinners would work and we can try that? I know all of this is going to work, the medicine, food and prayers and he is going to beat this!