Pray for Dorian #dstrong
(written by mommy Melissa)
My heart is left broken......
Yesterday I walked into a clinic room to discuss the few respectable images we were able to retrieve before abandoning Dorian's MRI of his right humerus and shoulder. The scan was getting lengthy and he was fidgety. It's alright, we'll just reschedule the scan and use sedation. I walk in the room and Dorian's oncologist follows.....then our social worker walks in after him. "Stephanie, what are you doing in here?!?! No no no!!! Get out!! WHAT ...THE .....?!?!?!"
There is only one reason for her to be there. Only one. One. One reason. No words are said. I put my head between my knees and try to catch my breath. Still no words are exchanged. None are needed. I catch myself before I crumble to the floor, and I cry until my eyes are swollen.
Today a CT scan confirmed my worst fear. A PET scan made it worse. Dorian's right humerus bone is grossly invaded by rhabdomyosarcoma. He has Rhabdo spots on a rib bone, both legs and a solid tumor under his right knee. My sweet child has relapsed again. This time while he was active on chemotherapy. My boy. My son. My world.
Options are heartbreakingly limited. Together, Chris and I both decided that we are not willing to give up. We head back to Hasbro tomorrow and will begin mapping for radiation. D will have his 104th radiation session Monday morning and will continue daily treatments for 4-5 weeks. We will discuss chemo options for Dorian. At this point, chemo is merely a short term solution to slow progression of disease until we can research and decide on other therapy options.
I can't describe how painful this is. My heart is crushed. My spirit shattered. My body physically hurts from the inside out. I am angry and scared. Dorian is angry and frustrated. But he is ready to fight. He is ready to kick ass again. He is ready to survive!!! Together, we stay D-STRONG!!!!!!
-Melissa will be spending every moment she can with her child. Trying to cherish every moment! I believe this ride is going to be more difficult than ever and they need our help. Please help me to raise money to help her keep up with their living expenses and make some great memories for her and D!
#cancerfearsme #dstrong #kickingcancersass #rhabdolife #relapse #fuckcancer #myhero #momcology #cancermessedwiththewrongkid #fight #survive
One, because go fund me has asked me to let you all know that these funds are all being deposited into a bank account. An account labeled "Dorians Miracle". All funds are being used for any needs of Dorian and his family, as well as a new non-profit organization The Dorian J. Murray Foundation.
Second, an update on Dorian. Dorian is a fighter and he is still with us. He is making his transition at this time. Heaven is soon going to have the most beautiful angel ever. Please continue to pray for a peaceful transition and for Dorian's parents, family and friends.
Stay #dstrong forever and always
Please don't read the next part and grab your phone to call or text Chris or me (or Kristy). Please understand that right now, we need space, private time with our son, and can not deal with our phones going off 1000x a day. While we know you only wish to offer your love and support, we just need time.
The MRI of Dorian's spine came back with devestating results. The rhabdo has passed into his spinal cord and small cancer cells are floating in his spinal fluid throughout his spine and brain. This type of spread changes everything. He is no longer elegible for any trial. Chemotherapy, which we knew wasn't a cure anyway, will no longer give him extended time. Chris and I spent hours with our son, holding him, loving him, and deciding next steps. We sat with Dorian today and had the talk no parent should ever have with their child. But we did it. We told him what was happening. We told him he had a choice; continue chemo and possibly gain days or a week at most, or, stay home and be comfortable. Hang out with his family, do some fun things and enjoy the time left. Without the daily visit to the hospital. No chemo. No vomiting. No transfusions. No needles. Dorian easily made his choice; and his father and I support him.
Let me be clear, Dorian is NOT dying today. He isn't dying tomorrow. We have some time, but it is severely limited. This is why I ask that you not all reach out at the same time. We want to spend this time with our son, not on our phones. Send your love to our FB pages. Maybe post a video to D, I'll make sure he sees every single one of them.
This journey has been hard and long. He has fought the most amazing fight and he never gave up. He is, and forever will be, my hero. Always, always, always
There have been some developments with Dorian that I have kept private until both I, and D's father, could wrap our heads around things and make some decisions.
There was a target therapy trial in NYC at Columbia University that we were very excited about. To be considered for this trial, Dorian needed to be 3 weeks out from any chemotherapy and radiation treatments. Dorian met all the elegibility requirements and was approved for the phase 1 trial. Last week, we took a trip to NY to enroll D into the program. We were hoping to start the new drug on monday, but D's platelet count was not high enough to begin. We would need to wait another week and begin the drug on the 30th. Unfortunatly, Monday night I received a call from Columbia and due to an administrative oversight on their end, Dorian was dropped from the trial and his 'spot' was taken by another facility. We were completly blindsided by this and we were left dissapointed and deflated.
On Wednesday Dorian had a PET scan done. The results were devestating. After three weeks of being off chemo, his cancer had "exploded" and was everywhere. The lymph node involvement was getting worse and multiple new boney spots were found as well as growth of a solid tumor in his right leg. We have lost control.
Dad and I were given three options:
Option 1: Take him home and keep him comfortable with pain management and understand that, with no further treatment, we would have about a month or two left with him.
Option 2: Begin another round of chemotherapy right away and try to regain control of his cancer, stop the growth and get him back to a stable state. Reduction of the cancer spots is obviously ideal, but realistically simply halting the growth my be our only outcome.
Option 3: Attempt enrollment at Penn State for an available immunotherapy trial. This would require going through the elegibility process, and not giving any treatment for at least another 10 days. This drug is only available at that facility so we would be traveling back and forth. This drug is very new, with outcomes and side effects unknown.
After considering options 2 and 3 (option 1 was off the table before option 2 was even suggested), long conversations with his doctor, our families and, most importantly, Dorian, and after one of the most difficult talks D's father and I have ever had, we decided that starting chemo immediately was the best choice.
There were so many variables involved with this decision. But ultimately we concluded that this may very well be the last significant decision we make for Dorian and his opinion of it matters. For almost 4 years, we made decisions without getting his opinion of it and basically forced him to do it. This time, his opinion matters and he is old enough to express his thoughts. When asked his thoughts, he responded with the most grown up answer I've ever heard from him. Knowing all his options, he also decided the same option we did. He wants to stay at his hospital and start chemo again.
As I write this, we sit in a hospital room waiting for his chemo to come up from pharmacy. We've already been here almost 8 hours, and will be spending at least 1 night here (more if he gets very sick from it and needs additional hydration).
I'm asking for each of you to please keep your prayers strong and full of healing and comfort for Dorian. We are not ready to say good-bye to our boy. He is not ready to give up. We keep going and continue to stay D-Strong!!!
A phase 2 trial has opened up at Columbia University Medical Center in NYC and we are moving forward with the eligibility process. Hopeing to have some contact and setup the first phases of meeting the doctors by the end of the week.
Hellou to you Man from Finland! Here is about -28 cold so it's in Fahrenheit -18. So very cold. I Don't recommend to go outside in this Weather! :D But i found you at Local News site. And i can say for sure, That 1 Million Finland Citizen knows you! And I can say that it is very famous in our scale, because there is not so many people in Finland :D
I can't imagine the heartache you and your family are going through. Having only one child, one I didn't think I could conceive, my miracle child - my world would end if I went through what you are coping with. My prayers, blessings and light are being sent to you.
Hey Buddy - I hope you got our good wishes & photo from Australia ? - stay strong and positive - sending hugs x
I left a comment with our donation but it doesn't seem to be there. This is from some of us at the school bus company. Keep fighting Dorian!
My prayers are with all of you. This little guy has completely won my heart the moment I laid eyes on him. Would love to chat with his parents.
Murray Family, Im currently a Junior at Nichols College and when I heard about Dorian I wanted to pull my entire campus together to show Dorian he is famous on my campus. I made a short video of student faculty and staff. I really hope this gets to you because we are all #DStrong on our campus. Stay Strong Dorian, heres our video honoring your strength! https://www.youtube.com/watch?v=gCJTBbRmlns
We spend a ton of time on Hasbro 5j, tomorrow fund clinics ourselves and I believe have been next door to you on one occasion. My (21 year old with special needs) child has uncontrollable Crohn's Disease. I wish you the best of luck with finding a cure for all these horrible diseases that affect our children!
Hello Dorian I´m from Finland ,love yoy ..........you are so strong :) Hugs from me and my family ......yoy are a fighter :)
Sending love to you and your family from across the state line in Norwich, CT. Stay strong little man, and I'm praying for you Melissa and Chris. We love you! #DSTRONG forever!
DSTRONG! You are famous and loved! You are a fighter
#DSTRONG YOU ARE MY HERO IF YOU EVER NEED ANYTHING PLEASE SEND ME A EMAIL OR A TEXT ON FACEBOOK ANYTIME YOU WANT TO JUST TALK I AM HERE FIGHTING WITH YOU ALL THE WAY YOUR FRIEND MELISSA WELLS
Praying for you in Wyoming, MIchigan. #Dstrong
You are famous in Tennessee prayers you're way little man
Dorian you are famous. Be strong little buddy.
Hey everyone! I'm from Chuck E. Cheese's in Warwick, RI and I'm here advertising our Kick Out Cancer with #Dstrong Day event we're holding Saturday the 30th! Everyone should come dressed in gold (color of childhood cancer) to support the cause. Donations will be collected throughout the whole day and will ALL be donated to THIS gofundme page! Check out our Facebook page for more details! https://www.facebook.com/chuckecheesewarwickri/?ref=hl