The battle is on: My Dad vs. Cancer

$144,986 of $400,000 goal

Raised by 788 people in 24 months
By Nikita Urs

We are a family of four. My brother, Dharam, now 23, has special needs. He has cerebral palsy, global developmental delay, seizure disorder, traumatic brain injury, Raynaud’s syndrome, requires 24 by 7 care, and has had a stroke. My father, mother, and I have cared for him for the last 23 years by ourselves, without any help.

 My name is Nikita, I am 20, and a student at UCLA,  on scholarships, working to get my B.A. in Psychology by 2019.

My dad, Ram, has had severe back pain for the last few months, (we thought it was regular back pain from carrying my brother), that had gotten progressively worse, with other symptoms manifesting. Due to our family's unique and difficult circumstances, we barely make ends meet each month, with help from family, friends, and our church.

On June 1st, 2017, my father who is only 52, was diagnosed with Stage 3 Multiple Myeloma, a rare and aggressive form of cancer. His bone marrow is packed with malignant plasma cells, which caused a multitude of lesions and minute fractures in his spine and ribcage. He is presently in a lot of pain and can no longer help care for my brother, who he is very attached to. My father has always been the rock of my family, and without him, it would be hard for any of us to function. He has a very challenging road ahead of him with many months of chemotherapy and radiation.

Because this type of cancer is aggressive, so is the treatment. To stand a fighting chance, my dad also requires high dose Chemotherapy, Radiation, and Auto Transplant in a hospital, and we are overwhelmed by how expensive the treatment can be. My dad is the most God-fearing, selfless, and hilarious man. He is my inspiration and surely a role model and mentor to many. Those that know him have had the good fortune to first handedly experience his kindness, generosity, and self-sacrificing nature. Our family really needs my father around and this diagnosis knocked the wind out of our sails.

The treatment for multiple myeloma has advanced greatly in the past ten years. Doctors are optimistic that at my father’s young age, with this treatment, he has a very good chance at remission. You can help my father access this much-needed treatment and help him battle for his life, by donating and sharing this post with others. It doesn’t matter how small or large, every donation helps. It is with heavy hearts and utmost humility, that our family is reaching out to all of you for your prayers, love, and much needed support.

All donations will go directly to Urs family to assist with uninsured medical expenses, travel and treatment, to allow our family to focus our energy on beating Cancer. Together we can!
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Dearest friends and prayer warriors,

That the human heart can bear so much, and still beat, is such a mystery. The extended silence was due to heartache and the sound of pain has been deafening. My sincere apologies.

While we have a big share of challenges we also have a bigger share of blessings. We have seen so many stepping forward to remind us we are not alone, that through them, God is supplying our needs...emotional, financial, spiritual and even physical presence. And for that and much more we are grateful...from the bottom of our hearts.

Rams pain has been increasing, his exhaustion and symptoms expounded. New lesions and fractures have made their way in his body, even on his face. Words and conversations....fewer, lost in fuzzy world.....more. Each of us learning to hide our emotions the best we can, so as to protect the other. Such has been life, lately, hungover from the sorrow He didn’t deserve that. No one did.

We got called in by the myeloma specialist today. One look at her face, and we knew she was at a loss of words. She stares at him in awe and wonder as to how he is still standing and looking so good. She spent many a nights awake...not because of a bouncy bubbly baby, but because of the enormous complexity of Rams case. The best drugs seem to be losing their effectiveness and the best minds together seem to be of the consensus that the lower drugs won’t work either. The only life savers seem to be the Haplo transplant or Car-T cell transplant, and the parameters for both are on opposite ends. And for each...ram meets some parameters and not the other. Being of the belief that if we can keep him going till next year...advancements in science will have a cure for his condition, she is trying a never before done treatment (risking infection). If treatment does not work,.... we are praying he will be eligible as an exception for Car-t cell transplant. If treatment works even a little, he will have to be prepared as an exception for a Haplo transplant as soon as possible.

In the immediate next week he has a Pet CT scan and another bone marrow biopsy. Addition of a fourth chemo infusion and praying that it does not cause undue complications or hospitalization.

Being nauseated all the time, has become part of the new me. Lord teach me your ways, to walk in your will, and most of all....teach me to be kind, loving and patient, and to work hard to put in my best effort and trust that all will be okay. The message I heard today was that it is okay for believers to feel vulnerable and weak and to grieve our disappointments, our losses, our fears... and yet through it all we know that He has us, and are thankful for His presence that comforts us and gives us the courage to go on each day. Praying for the sun to shine again.

Seek first the kingdom of God, before all else. Seek Him first, and He will take care of you. This keeps us encouraged, every day.

Thank you for journeying with us... albeit at a distance, but we feel you with us. Sending our love to you and your near and dearest.
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A time comes in your life when you finally realize...in the midst of all your fears and insanity, the voice inside your head cries out - “ENOUGH!” Enough of crying, struggling or fighting to hold on. And, like the tides ebbing after the floods, your sobs begin to subside, you blink back your tears and try looking at the world through tear washed eyes.

After a boat load of pre-transplant testing, the moment of truth...hit us like a whiplash. The fear of the unknown that a transplant might bring us, turned into fear of being ineligible for it for now, as the tumor burden was much higher, therefore increasing the risks. Bones in Ram’s spine and ribs have innumerable fractures and active lesions. So, for now, the doctors have advised to continue with chemotherapy and try to beat down the super aggressive cancer cells. The battle of science versus 17P 13Q 1 & 14 and the rest of the alphabet soup, wages on in the “ran bhoomi”.

Living day to day with cancer is like navigating the Colorado river rapids. When you have someone to share it with, you’re in a canoe. No matter how daunting, you face it together. Yes, your friends run along the shore, waving from time to time, but sink or swim, you’re out there on your own, braving the waters.

You realize it's time to stop hoping and waiting for something to change...or for safety and security to come peeking over the horizon. Yahi hai agnipath! But you know in your heart and of this you are very sure that no matter what the world throws at you, Gods plans for us are always better than anything we may have imagined for ourselves. So, we surrender completely to His will, and trust that He will work all things together for the good of those that believe and are called according to His purpose.

We thank God that we can be here together to celebrate our daughter’s graduation from college, pray that He opens doors of opportunities and gives her joy untold. That the hardships endured will mold her to the woman He called her to be. As a friend encouraged, “The same hot water that hardens the egg, softens the potato... Do not lose hope...the darkest hour has only sixty minutes.” Pressure turns coal into diamonds, fire refines gold, and a grain of sand turns into a pearl. Even though I do not understand it right now, I cling to the hope for a better future Jer 29:11.

Wishing the very best for you and your families and thank you for your prayers and support.
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The weeks that just went by have been pretty challenging, few highs and lots of lows. Each time I thought something was too hard to bear, something else comes by that needs to be dealt with, that's much much harder.
"I keep fighting voices in my mind that say I’m not enough,
Every single lie that tells me I will never measure up
Am I more than just the sum of every high and every low?
Remind me once again just who I am, because I need to know"....Lauren Daigle

We had a visit with a specialist researching car-t cells, at City of Hope hospital and what they hope to achieve for cancer patients in the future, that's right...in the FUTURE! Sadly, they are not ready for Ram now. Then we had a visit with the transplant specialist doing clinical trials, at Cedars-Sinai Hospital......here's the mouthful our oncologist had mentioned earlier, Haplo identical Allogenic stem cell transplant with donor lymphocytes NK cell infusion. After a second opinion and consult with others in the field, and long talks with our oncologist, an amazing caring lady, it seems to be the route we are taking for now. When the other options give you zero chance for survival, and here you have to weigh out the benefit of survival versus high risk of treatment related mortality or morbidity, the choice seems very restrictive. After much prayer, and in an attempt to contribute to science and possibly a cure to this presently incurable debilitative disease, and to be useful to as many people as possible...for a better future... Ram has decided to take this challenge. Healing comes when we can take our mind off our pain and help others. "Grace led me to faith and grace will keep me believing to the end. Faith, both in its origin and continuance, is a gift of grace!"

We truly believe all of you will come alongside us in prayer and in supporting us any which way you can, to bring a successful outcome to this great challenge we have ahead of us.....Ram as an individual, the doctors and researchers in their attempt to find a cure and our family, dealing with multiple challenges each day, on many many fronts. The next six to eight months and more will be truly grueling. Lord help us keep our eyes on you and not on our circumstances.

In the meantime, while awaiting preliminary tests, he is going through many cycles of chemo to get a control over those pesky 17P, 13q, 1 and 14 deletions along with the rest of the other mutations. Praise God that the platelets have climbed up a bit even though the white blood cells and hemoglobin numbers are falling. He is dealing with innumerable pokes, prodding, biopsies, agonizing bone and muscle pain and fatigue...looking at him one wouldn't even know. We need to be at peace with our scars, 'cause we all get wounded. Trying not to be discouraged by them, but when we see them, be reminded of what He brought us through.

Thank you for your cards, and support and for those that are traveling many miles to visit him and bring cheer. Especially also to his doctors who are steadfast on his team, and one even walked behind him through the hospital carrying his backpack for him, so he would get a break from it. Unheard of....but so refreshing. We are grateful to each of you for your faithfulness. And thankful in advance for those that can make some time to come and stay with us and help during this time. May you and your near and dear ones, be blessed abundantly.
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“This war's not what I would have chosen. But you see the future no one knows yet.”

Ram went through three rounds of chemo with one of the latest approved monoclonal antibody drug. Sadly his cancer cells increased by leaps and bounds, his platelets started falling and it made him extremely fatigued. We traded it in for a drug that had worked for him well before but had put him in sceptic shock, along with two others. A lot of friends and family came alongside to help with rides and Dharam's care, as needed. What a blessing to experience Gods hand so closely each moment.

“You're the anchor of my hope, The only one who's in control. I will cast my cares on you. I'll trade the troubles of this world, for your peace inside my soul”

We were told by his treating oncologist to explore a new clinical trial that’s on the horizon, as that would be his best chance, because of the aggressive nature of his disease. We went for the appointment yesterday with a lot of hope and aspirations. Sadly our visit did not go as expected. Rams treatment (the auto transplant and some of the chemo ) had caused a lot of damage to his platelets being sustained in his body. Apparently one has to have the disease progressing but entire blood count (WBC's, RBC's, platelets, etc) and organs in good functioning condition in order to be eligible for this clinical trial. It was suggested for him to keep fighting somehow till next year, so when this treatment is available commercially in the future, it would benefit him. The challenge is that the aggressive nature of the cancer might not give him that much time. It is devastating and heartbreaking to have the disease just a little bit ahead of the science curve! So the plan for now is to take a chance on some treatments...to assess if we can make him sustain his platelets and hence make him eligible for the clinical trial. Your prayers on that front are greatly needed and that he secures a place in the trial. A friend once said, “An unlit candle does no shining. Burning must come before shining. “

If I were to be truthful, I must admit, that in dealing with Rams diagnosis and the futility of it all, in my selfishness, on few instances I chose anger instead of grace and patience. I chose to focus on how hard it is for me, instead of how to help him more. He is the one dealing with excruciating chronic pain, memory issues, unending fatigue, helplessness and sleepless nights. But God has accorded more grace and mercy to me through all my weak and Ram struggling moments. I am truly blessed and honored to be able to have this opportunity to be of service to my best friend and family in more ways, than most. For this and much more, I am thankful.

For now our motto is “Purpose defeating pain, Hope outshining hurt.”

A bruised reed he will not break and a smoldering wick he will not snuff out. Till He had brought justice though victory - Matthew 12:20.

Taking all I have and now I'm laying it at Your feet, You have every failure God, and you’ll have every victory.
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