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My Name is Jhaysonn

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“Hey, they did an ultra-sound and said it was a [swollen] lymph node. The lady then found like 6 more that were abnormally swollen in the area.” I wrote that to my parents while living in Daejeon, South Korea. Ten days later, on March 27th 2009, I was on my way back to their home in Jacksonville, Florida with Hodgkin’s Lymphoma as my carry on.

Ah, “well that’s the easiest cancer to get rid of,” they said. The Hodge, as I had come to call it, didn’t get that memo because it sucked down some 150 odd bags of chemo, bathed under the warmth of radiation and hijacked my own brother’s immune system and didn’t want to leave Jhaysonn-Town. I fell in and out of remission so many times that they ended up sending me home to ‘get my affairs in order.” God knew better though, and set me up with a great doctor at Mayo that had a first hand relationship with a new targeted chemo, Adcetris, and it gave my (brother’s) new immune system time to grow defenses to get rid of it once and for all".

Unfortunately, cancer wasn’t the end.   After that was graft versus host, and then came bronchiolitis obliterans (BOS).   We found it late and we’ve tried everything, but there is no cure yet.   I can’t even get a transplant because I’m too sick.   I don’t believe God is done with me though and I’m very stubborn, so I’m not going to give up just yet.  That means we keep looking and that leaves us in the world of regenerative medicine.  Today, the closest treatment we can do is to have an Mesenchymal Stem Cells (MSC) infusion.

MSC’s are specific kinds of cells that play a part in building the human body.  I have had one so far and it has helped my GvH and lungs a little bit, but I need more regular treatments and they are not covered by insurance.  I am on oxygen 24 hours a day, travel is difficult for a number of reasons with 24 hour fatigue as my new norm, which makes the smallest movements tiresome.  Since my immune system is shot, I cannot be around crowds of people and I have to wear an antiviral mask. Any sort of bug can cause a whole host of problems.

Although God, great doctors and drugs defeated cancer, the effects of the bone marrow transplant (BMT) have resulted in a daily fight to stay alive.  The BOS that sprung up from graft vs host disease (rejection) has been slowly shutting my lungs down during the past five years.  Today I am in end stage lung disease and need help to find a cure that will not only help me but others. 

The MSC treatment I received sparked a trial to investigate others like me and I’m glad to know that the improvement I experienced will help and become part of the official record for others to try safely.  I hope and pray that with your support I can use the other regenerative therapies we are pursuing and prove them as useful too.  I want these things to be helpful and not just solely for me.

Hi, my name is Theresa Pathak, Jhaysonn’s Mom.  End stage lung disease can take a year or two before it completely debilitates the person.  Jhaysonn’s doctors have been warning us for some time that there is not much more they can do. The words, “we don’t have anything else to offer” (to address his disease at this time) keeps ringing in my ears, scares me, and motivates me to keep trying anything we can to save Jhaysonn.

We want to dedicate all of our time and effort to help him for however much time we may have left to be with him.  We feel that we need to spend as much time as possible doing what we must to get treatments that can help.  There is just not enough attention to this rare disease. Since Jhaysonn does not qualify for transplant because he is too ill at this time, perhaps we can use our experience getting his treatments to help others as well.  During this time our desire as parents is to first spend every available minute and seconds with him to find a cure or at least a way to help him build up his health and get strong enough to qualify for a transplant.  This cannot happen without these new treatments, we have seen it work with the small improvements in his skin, hair, nails from the last MSC, but more is needed and more regularly, which means we have to go out as far as Canada and the west coast (anywhere) to clinics that offer the treatments.  Cancer was difficult, and now lung disease is difficult, not being able to afford the treatments and necessities is worse.

My name is Ron Pathak, Jhaysonn’s Dad. The great thing about our son is that he is amazingly resilient.  You wouldn’t believe that just a couple years ago he was being told to get ready for palliative care, get his five wishes done and be done with his life.  No matter how many times the doctors tell him he is going to die, Jhaysonn is determined to get through this as we are, so he continues to walk a few minutes at a time on his treadmill, uses his Trilogy machine regularly, keeps up with his doctor’s appointments and is convinced that through all this he will win.   As a father I am up and down with emotions all the time, nearly eight years and he surprises me every day.  We only want to give him the best fighting chance possible.

I believe that Jesus Christ, who took on all our afflictions, will open all the doors necessary through creation to provide what is needed for Jhaysonn's healing as He has over these many years.  No matter what the challenge Jhaysonn faces, we ask that you join us on this road with your continued expressions of love for a life you may not know, but that you can be a part of in a positive way.  I believe that helping Jhaysonn will open the days ahead that are waiting to be fulfilled for him to be a powerful witness for Christ.  Why else would he be on this tumultuous road for this long?

Our funding purpose: To cover repeated Mesenchymal stem cell regenerative therapies, gene therapies and genomic therapy over the next year. Obtain a medically modified camper for Jhaysonn to travel safely for treatments, prepared safely with the breathing machines necessary, tanks and medical equipment, and a bed that helps his back issues.

Jhaysonn is not able to travel commercially due to the bacteria and germ exposures in confined spaces.   A simple cold, flu or fungal infections that a healthy person can ward off, Jhaysonn cannot.

By the way... all of what is needed is not covered by insurance of any kind.   Oh-Joy.

May you be blessed through your kindness, thank you!


Ron Pathak
Jacksonville, FL

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