My Grandson Fights 4 His Life DIPG Rare Cancer
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My name is Victoria Zedan, my wish for Christmas is to have all my family, friends and people in the world I don't know to hug your children, niece, nephew, an grandchildren. Let them know you love them always, don't go to bed mad at your children no matter what their age is. Always, an I can't stress this enough... Always appreciate the little things in life that a child does. We all were once little. I can remember times when I would say to Diamante, please be quite, I'm talking an that is rude. Or your children are playing and getting a little loud and you ask them, quite down you guys... Can you remember the last time you told your child, grandchild, niece or nephew to be quite???
Better yet you see something on the news and your heart hurts for that person who's child Is very ill or something bad has happened to them. You say to yourself or whom ever your with, I'm so lucky that my children are healthy and nothing like that has happen to me or my family. Then you can't wait to see your children, grandchildren, niece or nephew so you can kiss them, hug them an get all warm inside because your not the parent on T.V. who is hurting so deep inside, you can't even imagine nor do you really want to because that would mean you would have to feel that horrible anger, despair, sadness, but most of all, helpless as to how to help them or their children. We don't want to even think about it... Well my daughter Shainea and Diamante's father Rufus, his family, myself and our family is thinking about it every day since November 14, 2018.
We became one of the family's just like on T.V. that you say, my heart hurts for them but I'm so glad it isn't my children or me that has to go through that. I don't wish this type of news on anyone with or without children. I can only tell you about my pain it hurts so much I can't breath, there are no words to explain how I feel. But that's only me, I wouldn't know how to tell you how my daughter feels, I can only see and feel her pain because she is my child. Well, Diamante is her first born child, he is the light that shines on her face, the wind that blows her hair, the storm that rattles, when he's angry and the rainbow that makes you all warm inside. I can't even begin to know what my daughter is feeling... I say this now because I would give my entire sole to the devil, just to hear my grandson's voice again. I'm asking for prayers, hope, but most of all a Christmas Miracle.
My daughter Shainea has been going through hell in just over a month, but most importantly my grandson has been enduring so much pain, confusion and not being able to be himself as this disease has taken everything from my grandson. Two months ago my grandson was going to school everyday, playing with his friends, he was eating food, talking, being able to care for himself! This is so hard on all of us, especially his younger sister Destiny.
Destiny is 4 years old and she is wondering why her brother won't play with her or talk to her. Destiny told her Mom that her brother is faking being sick and that we all love Diamante more then we love her. Even though we took her to the hospital so she could see her brother, Destiny just didn't understand. Destiny would tell her brother to get up and play with her, why are you faking, why do you always want Grammies an Mom to stay with you at the hospital. Tell those Doctors to take all that stuff off of you brother, are you listening to me brother? Talk to me, I'm your sister it's me Destiny!! It wasn't until we really told Destiny what was going on because her brother Diamante had to have a very scary surgery. We were in the hospital an they told us that Diamante would need a feeding tube because he had lost weight to fast due to the fact he couldn't eat or swallow. Every time he tried to drink something he would choke and scare us all. It got so bad that we would put food in food processor and blended it all up, but he couldn't eat it, then we tried baby food, he couldn't eat that either or drink anything. The Doctor told us, the Nutritionist said, it would be best if we got a feeding tube for Diamante.
We knew that was coming because he was loosing control of his hands, legs an feet. We had to start using a wheelchair to get him around, Diamante was talking but his words were slurring an he started to drool a lot as it got harder and harder for him to swallow. We were then told it's an easy procedure no sedation, no doctors, just the nurse's. We were so happy, because he had to be sedated to get his pic-line, which is put in his arm right by the muscle, then it's guided up his arm, across his chest an right to his heart. This way any medicine's that need to be given to him would be put in there. Less pain for him as well because then he wouldn't have to be stuck every time they needed blood. Then later that day he had to be sedated again so they could fit him for his mask that he has to ware in radiation. There's a picture of his mask in this article.
This was yet another day in the hospital, but like I said there was no sedation and the nurse came in to do the procedure which she wasn't that good at doing it in the first place. After the feeding tube is put in, they need to do an X-ray to see if feeding tube is in place but the nurse messed up an had to pull out the feeding tube an do it again. As you can imagine my daughter was furious because her son is only 6 and he's just not understanding what is going on. My daughter is yelling at the nurse at this time an telling her to get someone who knows what they are doing. I guess I'm trying to tell everyone out there who reads this what hell we went through, more so my grandson. DIPG IS TAKING OVER MY GRANDSON!!! DOCTOR'S NOT KNOWING NOTHING MORE THEN THEY DID 50 YEARS AGO...
Anyways a nurse was walking by at that time and said let me do that, he asked my daughter Shainea an godchild Danelle has he been asleep like this the whole time? They said yes an he said he's not sleeping he's unresponsive! They all tried to wake him up but nothing he wasn't responding to anyone that's when they called a code BLUE! I just happen to leave to get some things from the house cuz he was doing good. That's when I got the call to get to hospital fast, I was NEVER so scared in my life! When I got there my daughter was a wreck, I told her to get some air I'll go where ever there taking him, it was for a catscan. The whole time I was taking to him an telling him he has to wake up! Please Diamante wake up, talk to Grammies. I couldn't and wouldn't leave him so they put a vest on me while he was doing the scan an I kept talking to him. When they were taking him out I saw him moving an I thought I saw his eye's open an I told them to stop an get out the way he needs to see and hear me... I said, Diamante look at Grammies can you hear me raise your hand if you can? Diamante raised his hand a lil an he looked at me! I said hi, you scared us. The nurse said it's just him moving an opening his eye's like a twitch I said your crazy, he heard me. He closed his eye's and we were off to MRI, which I didn't stop talking to my grandson until I realized that Diamante would have to be sedated for MRI. I said don't you have to sedate him for that cuz I don't think you should, besides you need to talk to Shainea, as we were going into the MRI room the phone rang an everyone started to move fast, what's going on, we need to get him to the O.R.
I'm like what? I see my daughter standing there by the room crying and I said, I got him to look at me, what's wrong? Mom she said, Diamante has to have surgery on his brain because it's swelling and there's to much fluid on his brain from the tumor. I was totally in disbelief, when I saw all the pain and tears in my daughters eyes. Just when I thought she was going to crack, she didn't, she became a young women with great strength and courage. Shainea said I have to be strong for my baby and she went into the room and whispered in his ear and his little eyes opened, she kissed him said I love you son, I'll be right back. Mom hold his hand while there getting him ready for surgery. I told myself don't cry be strong for your daughter an grandson. My daughter walked out of the room, shut the door an sobbed in her brothers arms and said, WHY? WHY MY SON? Why didn't they know he had this before, why don't they know anything about this disease? My son was happy, playing and very healthy what went wrong? Her brother Frank looked at her an held her tight. Shainea wiped her face, took a deep breath and walked back into the room to be with Diamante before they had to wheel him to O.R she asked calmly can I walk with you. They said, yes, but only to the O.R doors. Her eyes weld up, she shook her head pulled her shoulders back an NO tears. We all kissed Diamante and had to wait for the surgery to be over, that was suppose to take 45 minutes to an hour. Which ended up to be 3 hours.
The Nurse that walked by my son's room who put the feeding tube in Diamante and the surgent, saved my grandson's life. Had they waited any longer my grandson could have died. There are NO WORDS, WE CAN SAY TO THOSE TWO MEN WHO SAVED MY GRANDSON... They had to put a shunt in my grandson's head which meant they drilled NOT ONE BUT TWO HOLES IN HIS HEAD, WHICH THEY SHAVED ONLY HALF OF HIS HAIR DUE TO T IME BEING AN ESSENSE. THEY ALSO CUT INTO HIS HEAD AS WELL. THEN HIS STOMACH, ALL FOR THE SHUNT TO BE PLACED JUST RIGHT...THE TOP OF HIS HEAD HAS A VALVE THAT STICKS OUT HIGHER THEN HIS HEAD, THAT WILL STAY THERE FOR THE REST OF HIS LIFE. WHICH WE DIDN'T KNOW UNTIL AFTER SURGERY. THAT WOULDN'T OF CHANGED MY DAUGHTERS MIND BUT SHE WOULD HAVE LIKED THE DOCTORS TO TELL HER EVERYTHING GOING ON WITH HER SON.That's when we had to really explain to my granddaughter, Destiny just how sick her brother is. THAT WHAT VERY HARD TO DO, LOTS OF CRYING, QUESTIONS THAT WERE TO HARD TO ANSWER FOR A FOUR YEAR OLD TO UNDERSTAND.
Now that I've told you all pretty much what our days have been like in the last month, I'm gonna just say it, MY DAUGHTER SHAINEA AND MY GRANDSON DIAMANTE NEED YOUR HELP OR LET ME PUT IT OUT THERE I NEED YOUR HELP FOR THEM!!! I DON'T HAVE LOTS OF MONEY OR A SPOUSE TO HELP SUPPORT ME. MY LIFE HAS BEEN THOUGH UPS AN DOWNS BUT WHAT THERE ABOUT TO GO THROUGH MY BANK ACCOUNT CAN'T HANDLE IT, I'M VERY PROUD OF MY DAUGHTER! SHE HAS ALWAYS TAKEN CARE OF HERSELF AND HER CHILDREN. TO PROUD TO ASK FOR HELP BECAUSE SHE ALWAYS SAYS SHE CAN DO IT, WHICH SHE DOES!!! SHE IS TO YOUNG TO UNDERSTAND THAT SHE'S GONNA NEED MORE HELP THEN ANY OF US CAN GIVE HER.Let me begin by telling you about this disease and what it can do to a child. My Grandson has DIPG also know as Diffuse Intrinsic Pontine Glioma. It's a highly infiltrative malignant glial neoplasms of the ventral pons that, due to their location within the brain are unsuitable for surgical resection and consequently have a universally dismal clinical out come, the median survival time is 9 months - 2 years, with neither chemotherapeutic nor targeted agents showing substantial survival benefit in clinical trials in children with these tumors. DIPG IS AN INCURABLE DISEASE, WHAT DOCTOR'S KNEW 50 YEARS AGO THEY KNOW NOW... WHICH IS'NT MUCH!!! The reason being is there are NO funds for the doctors an scientist to do research on this type of CANCEROUS BRAIN TUMOR. Any women who is pregnant can have just about any test to detect if there is something wrong with their child from mentally challenged, to limbs missing from their children and if I'm not mistaking they can even perform surgeries while the baby is still in their mommy's tummy. But they CAN'T DETECT DIPG!!! WHY??? The Doctors say that he was born with this tumor that as he grew inside my daughter the tumor grew. Basically what they said was when he was a fetus the X'S AND Y'S CROSSED EACH OTHER AND SOMETHING AT THAT MOMENT WENT WRONG! WHY??? WE DON'T KNOW, THE DOCTORS SAID. BUT WERE VERY SORRY
It's difficult to treat and very rare, only 200 to 300 CHILDREN GET THIS DESEASE A YEAR, WORLD WIDE, THEY TOLD US... THIS TUMOR HAS A MIND OF IT'S OWN, IT BECAME PART OF MY GRANDSON. IT LIVES AND BREATHS EVERY TIME HE DOES ONLY THE TUMOR WANTS ALL OF MY GRANDSON IT WANTS TO TAKE OVER HIS LITTLE BODY... BUT MY GRANDSON IS A FIGHTER, HE DOESN'T GIVE UP!!! DIPG Attacks just about everything in a child's body. It's almost like "IT" that's the tumor's name when were talking, this way Diamante doesn't know what were talking about. But Believe me when I say this DIAMANTE KNOW'S!!! It's like the "IT" has a mind of it's own an it takes over my grandson. As if he has split personality, when you look at him sometimes I can't see my grandson, his eye's are dark an he glares at you. That's when I know it's the "IT" glaring at me not my grandson. DIPG HAS TAKEN ALMOST EVERYTHING FROM DIAMANTE.
I don't know much about medical things an NEVER did I think for one minute that my daughter, Diamante's father Rufus an I would be in this terrible tragedy with my grandson and their son Diamante. We always think we can fix things when it goes bad or we can make it better but we CAN'T this is something that CAN'T BE FIXED! NO ONE BUT GOD, A MIRACLE, MEDICAL SCIENCE AND MONEY CAN FIX!!! SO I'M ASKING FOR HELP NOT FOR ME BUT FOR MY GRANDSON MY DAUGHTER SHAINEA AND HER DAUUGHTER DESTINY
DIPG has attacked his LEGS, ARMS, EYES, THE ABILITY TO SWALLOW, MEMORY IT ALSO MAKES YOUR JOINTS STIFF TO WHERE YOUR RIGHT FOOT TURNS ALMOST ALL THE WAY TO THE LEFT AND VICE A VERSA. CAN YOU IMAGINE HOW PAINFUL THAT MUST BE? THAT HAPPEN'S WITH HIS HANDS TO AN ARMS. IT'S AS IF SOMEONE IS PULL ON MY GRANDSONS LEGS AN HE IS TRYING TO PULL THE OPPOSIT WAY. DIAMANTE NEEDS 24 HOUR CARE AND I JUST CAN'T AFORD ALL OF THE COST, HE NEEDS SPECIAL NEED CARE SEAT THAT COST ANYWHERE BETWEEN $1200.00 TO $2000.00
I'VE GIVEN YOU ALL THAT I CAN, I'M NOT THE GREATEST WRITER IN THE WORLD AN I PROBABLY REPEATED MYSELF BUT I JUST WANT TO EXPRESS MY SADNESS AN HOPE FOR MY GRANDSON AND DAUGHTER TO GET THROUGH THIS... I'M NOT GOING TO KID MYSELF, I KNOW THE DIAGNOSE'S AND THE PROGNOSIS IT'S JUST HARD TO TAKE ALL OF THIS IN. IT'S ONLY BEEN A MONTH AN 16 DAYS. HE JUST MIGHT BE ABLE TO DO THIS TRIAL AFTER RADIATION BUT HE HAS TO BE ABLE TO HOLD HIS HEAD UP ON HIS OWN, WALK, TALK, MOVE HIS ARMS AN SIT UP ON HIS OWN OTHER WISE THE CHEMO THAT HE WOULD HAVE TO TAKE WILL BE TO STRONG AN HE WON'T MAKE IT THROUGH THAT. WERE VERY OPTIMISTIC, WE HAVE TO BE... I HOPE I DID THIS RIGHT AN THIS ISN'T TO MUCH INFORMATION. I'LL DO ANYTHING FOR MY GRANDSON DIAMANTE TO LIVE!!! MY DAUGHTER SHAINEA DOESN'T KNOW THAT I WROTE ALL THIS BECAUSE SHE REALLY DIDN'T WANT TO ASK FOR ANYTHING SO PLEASE HELP US!!! I REALLY CAN'T DO THIS ON MY OWN...
Organizer
Victoria Zedan
Organizer
San Leandro, CA
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