Original Cancer Diagnosis: 2/18/2009
Stem Cell Bone Marrow Transplant Birthday: 2/19/2011
Five Year Remission from: 5/1/2012
Mesenchymal Stem Cell (MSC’s) Transplant Date: 5/31/17
Onset of Graft vs. Host Disease (GVHD): Chronic and continuing
Chronic Bronchiolitis Obliterans (BOS). cGVHD from a stem cell transplant to treat a refractory nodular sclerosis Hodgkin's Lymphoma
Current Lung Capacity: 19%
Current Weight: 100 lbs.
RIP: 7/13/2018 - Visit at Greenlawn Cemetery, Jacksonville, FL.
Jhaysonn V. Pathak, 33. March 15, 1985 – July 13, 2018.
Jhaysonn was a unique individual. He lived his life in his own way, loved Jesus, and loved every person he knew. No matter your circumstance in life Jhaysonn was more than willing to listen, give a hand, or even talk a rather serious and inspiring conversation. His wisdom surpassed us, taught us to be patient and kind to others, and to be still - to listen to the quiet and wait for the truth. James 1:19
Jhaysonn’s music was like candy; it came in many forms - beautiful and calming classical, rock that made you get up and move, digital creations that were inspiring and calculating and moving. His collaboration with friends and fellow musicians will be sorely missed.
Jhaysonns to do list was a list of friends and family and what he could do to be a source of encouragement. If Jhaysonn inspired you in any way, with his value of kindness, patience and kindness, please share your story and help make a better caring world. Where everyone is heard and no one gains at the expense of someone else.
This is our son, brother, your friend - Carry his legacy forward werever you go.
Luke 7:23: Blessed is anyone who does not stumble on account of me. His illness did not stop him from believing but gave him confirmation that God knew his circumstance.
Jhaysonn’s Mother, Theresa, Father Kieron, and Brother Matthew (Leilani). Thank you for attending Services for Jhaysonn.
(PLEASE SCROLL DOWN TO SEE UPDATES BELOW)
Help Jhaysonn Stay Alive and Come Closer To a Cure!
“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.
Our funding purpose: To cover repeated Mesenchymal stem cell regenerative therapies, gene therapies and Genomics over the next year. Obtain a medically modified camper for Jhaysonn to travel safely for treatments, carry oxygen concentrator, tanks and medical equipment, a bed for his back issues, numerous drugs etc. etc.
May you be blessed through your kindness, thank you!
4/7/18 UPDATE: This past Monday night 4/2. Jhaysonn coded in the ER. When his dead fixed eyes of his head and his skin turning green lay in my hands I thought OMG, this is it, we are going to lose him! But GOD HAD OTHER PLANS...
The ER team rushed in and I heard one of them say, "I can't feel a pulse, our hearts sank, my knees were nowhere to be found and Jhaysonn's brother Matthew, myself and Theresa locked together like a bit on a pier. Otherwise we would all have fallen. Just as hope was draining from me, the next thing I heard was, "I think I feel something!" ..Thank God for the ER team, they took over and brought him back!
Finally up at ICU the horde of doctors and nurses descended like a guard of Angels, surrounded him, and the chatter of medical this and that dominated like a song rising to heaven for guidance and instruction. To intubate or not to intubate? Deciding later that they would use the breathing machines first they opted to wait on intubation because it is so invasive.
Tuesday and Wednesday Jhaysonn is breathing so hard that his heart rate hit highs of 127 to 135 bpm. It looked like he was running a marathon while laying in bed. Co2 up Co2 down would not drop below 100 (normal for you and me is 40), finally invading upward to 155 he is 15 points from coding again.
Thursday. No one is getting any rest. Jhaysonn has not had any nutrition for four days and starvation is imminent for his 114 lb frame, the Co2 is persistently high. The tough decision to intubate is made and Friday they intubated, then proceeded with the Tracheotomy. Jhaysonn finally takes in a breath from the ventilator that clears out the Co2, drops his bpm to 86 and he gets some needed rest. All this and no brain damage, it's is truly God's protections while his people work.
The worst is over... he gets more time albeit now hooked up to a ventilator connected to his throat and a feeding tube through the stomach; but time has been added to the clock!
What a week. Unfortunately for Jhaysonn it’s not all over because he is still left with 14% lung function and the bronchiolitis obliterans that brought him to the ER in the first place. The ventilator and the feeding tube will be okay for a while but this means he now must have us by his side even more. The only potential for a solution is these MSC treatments we are fundraising for. The urgency has moved up another notch.
4/14/18 UPDATE: So the week at the ICU has been challenging in that Jhaysonn is having a terrible time adjusting to the tracheotomy. Frankly I can't imagine having a tube stuck down my throat either, but we have to find a way to make it work.
Anxiety attacks galore all day and night is aggravated by not being able to talk anymore so he writes that it's like drowning. Can you imagine scuba diving down to a hundred feet with 25 feet of air? Lots of Ativan, methocarbamol and some other calming drug I cant remember right now.
Sure you have noticed my posts have slowed down a bit, still trying to keep on top of the fund raiser between rotations with Theresa, work and raising funds. Rest assured that Jhaysonn still needs to get the MSC treatments sooner rather than later now. We have to keep his body going long enough to take advantage of new tissue regeneration science coming in a few years.
Please keep sharing the site and sending folks to visit our story. The GFM has nearly stopped and I am trying to figure out a way to reactivate it. If you have any ideas, please share.
4/21/18 UPDATE: Okay, so we have identified a machine made by Zoll that can handle Jhaysonn's particular breathing settings to match that of the hospital equipment. They are in discussion with Jhaysonn's pulmonary doctor and will be attempting to locate a home health company that will negotiate a deal with Zoll to support it. Jhaysonn's mechanically assisted breathing needs will continue until we are successful with our MSC and regenerative medicine plan to get him healed.
This machine only weighs 10 pounds and used by EMS. It is needed before he comes home because it can deliver up to 100% oxygen if needed, as opposed to Trilogy machines which are not designed to deliver o2 boosts. This machine is light enough that once Jhaysonn can walk will facilitate him being able to get around better.
This need just added 20k to the budget (two are needed at 10k each so he has a backup if one fails). If you are interested in looking at the unit you can see it by searching the model Zoll EMV+ it will come up top of the google search.
Please share our story with anyone you know who has the ability to refresh the fundraising efforts. Looking for sponsors too.
4/27/18 UPDATE: It's Friday!
Another week of progress to report. Jhaysonn is holding his own and managed to test a ventilator for nineteen minutes yesterday!!! This is a very good sign that he is working hard to let his automatic breathing instincts to relax and let the machine work for him. I just cannot imagine having a tube stuck in my throat and then depend on an external source to breathe, particularly when there is only 14% room in the box to begin with.
But Jhaysonn will defy the odds again and slowly get back to PT walking the floor. Once he is able to walk the length of the circle around the hall, the docs will be thinking about letting him come home and then we can once again move to making his MSC treatments happen.
Thanks to your help, we have enough for one treatment but still need four more after that not including the medically outfitted RV to move him around.
Thank you God and Blessings to all of you who have jumped on board in this effort to give Jhaysonn more time. With your continued support we will figure this out and one day have that party where Jhaysonn plays for you.
Sorry for the silence these past few weeks. Been facing many challenges with Jhaysonn’s transition to breathing with a machine. I have come to realize what it feels like to drown, and yet not drown. I dreamed a characterization of how it must feel. Imagine being under a hundred feet of water, stuck there, and only having twenty-five feet of air that you can only get through a straw. The 24 hour panic that ensues consumes your mind, keeps your body tight as a rope, and you thrash around trying to calm yourself with the little bit of air straining through that straw.
This is Jhaysonn’s life now. A battle of the mind and body to overcome that panic that is the hardest thing anyone could ever do. Jhaysonn’s tracheotomy is not like others because he only has 14% of his lungs functioning in the first place. A hundred percent of 14% is still 14%. Can you imagine?
Theresa and I are at the hospital rotating every twenty four hours each day. We shift change around 2 since this is the lull time in administration of 31 medications. We try to rest at night with Jhaysonn, but you know how it is in a hospital, it is not the place to get more than a couple hours sleep at a time. These Blessed and yet confounding nurses, doctors, lab techs flowing like steady river of life picking, poking, adjusting, blood sampling… it goes on 24 hours a day. But without them life for Jhaysonn would be even harder. We try to rest at home during our breaks but it seems to be nothing but filled with worry, texts back and forth checking. Around the third rotation we get home and the body crashes. This has been going on since Jhaysonn coded in my hands on the 2nd of April. 43 days now and we have a few more weeks until we find the right ventilator as Jhaysonn adjusts his survival instinct.
This week we are testing the third ventilator to see if it can handle the high Co2 caused by the low efficiency levels of his shrinking lungs. These lungs are the driving force behind my constant push to raise the funds needed since insurance will not cover the special treatments Jhaysonn needs to survive. First the MSC treatments to keep him going, second the transportation issue of a modified vehicle with med equipment, third getting him one of three technologies for him. So many advances out there that are just within reach. Either the CRISPR-Cas9, Regenerative Organ Growing (organoids), and/or if the MSC’s work and help his other systems get stronger, get a standard lung transplant that he doesn’t qualify for now due to his bone density and weakened state. Our hope (arising from tons of research) is that the MSC treatments will strengthen Jhaysonn, help improve his lungs, and keep him going until these technologies become available.
Please continue sharing our story, introducing your friends, and thinking about potential public figures you might know who might consider becoming sponsors to help raise the balance of the budget. All we want to do is give Jhaysonn the best fighting chance available with the science out there.
Our sincerest thanks goes out to all of the 542 donations we have received so far, what a beautiful testament of your Love and caring hearts. You have shown us what love for another human being is over and over again. You are part of the hope for humanity.
6/9/18 UPDATE: Day 67 In Hospital
Since my last post we have had some serious up’s and downs with Co2 that has kept Jhaysonn knocked out. This was until day 60, when a new pulmo doctor came in and finessed the hospital machine into bringing Jhaysonn’s gas level down under 100. Jhaysonn began to stir out of being incoherent during this past month, to showing his indomitable smile. What a dude! He endures so much and still comes out smiling!
We have found a ventilator made by VentecLife that has just been approved for home use by the FDA, which means the time wasting fight we would have had to enter into with the FDA is now moot.
We are working on getting a test done with this machine as soon as possible. In addition to that, we got approval to try an experimental drug called Pirfenidone that was introduced to me by a patient at Stanford over a month ago whom I met online at Facebook. He mentioned that he was in trial with it and having some good results, so I shared that with our docs and they finally got approval to use it. Jhaysonn just got his fourth dose this morning.
So all in all, the Buzz man is stable, able to stay awake a little more now, and showing the Jhaysonn we all love as much as he can. A gas level of 100 is still very high but at least he is more aware. Praise God!!!
On the fundraising side of things.. The fundraiser has stalled completely with the last donation a week ago. A total of 565 people raising just over 55k!! What an accomplishment that deserves HUUUGE PRAISE AND THANKS!! We are one third of the way there thanks to you :-)
To ensure Jhaysonn gets what he needs for the long term, may I please request you consider this unique opportunity. If all 565 of you were to make an additional donation of $100 it would propel us to reach two thirds of goal in an instant.
Please consider making a follow up donation of any amount to help us to continue opening up doors for Jhaysonn.
Thanks for your generosity.
6/18/18 UPDATE: Day 76 In Hospital
Just gave Jhaysonn his med regimen, his special home made shake and suctioned his trache. He is more aware since everyone has figured out how to maximize the hospital machine (Servo-i) and the new med (pirfenidone), an anti fibrotic is now in its sixth day of treatment. Nothing dramatic with improvement but I am seeing some signs of change where he is not so frustrated and anxious breathing. Any small change is encouraging.
We had twenty people come and go all day yesterday delivering an eight hour prayer session in the room. The Holy Spirit was definitely in the room. He is handsome as ever with a glow. Prayer always has a positive effect on Jhaysonn. Of course we want a miracle whiz bang, but you know.. God works his magic in the most effective way that brings glory to his kingdom. We have no doubt that one day Jhaysonn will be sharing his story, playing his guitar, giving the message of Hope and the Promise to all who want to hear.
I refuse to believe that after all this hardship, pain and suffering this young man has gone through that it will end without a demonstration of God's power. There is something special afoot, and I believe that one of the reasons we are having to do a fundraiser is because this is also part of His plan to show as many as possible the direct effect of your kindness and faith in Jhaysonn's ability to come through in the end.
Please keep circulating our story and make Jhaysonn a part of your regular giving plan.
6/22/18 UPDATE: Day 80 In Hospital
Well, am dissappointed to hear that the VOCSN ventilator folks have dropped away because they don't believe their new machine will support Jhaysonn's Peep pressure of 50+ (Peep Pressure). its the same story over and over five machines later. So, we are back to arguing with the FDA over the T1. It appears to be the only one left so far. So we keep looking. Either way the expense is humongous.
This week was also full of challenges with his ammonia levels. Have not reported on that as of yet since it seemed ok, but when it hit a high of 76 the levels hit his brain and he began convulsing. We began the Lactulose treatments which is the only thing known that gets rid of ammonia in the system. And yes its poopin' time. Eight times last night. My buddy's butt is not happy. This mornings test was 47. We operate on 15 to 40. A little more to go. We are also trying out L-Carnitine that body builders use to lower ammonia in the body as well. The thinking is that the L-Carnitine may be the maintenance supplement down the line.
Kinda depressed to be honest, need more prayers to help me understand why Jhaysonn must suffer so. I know God has a great plan for him but it's just hard sometimes to get a handle on this. When we get him home it will mean round the clock for both T and me. We are certainly up for it with your prayers.
7/1/18 UPDATE: Day 89 In Hospital
Whew! Jhaysonn had to have two pneumothorax procedures to relieve air that was escaping into his body cavity this week. With words of caution and doom the doctors warned us of all the dangers, but once again, God has other plans. What they said would be a problem with healing that could take weeks, was over in two days. The lung expanded to touch the pleural wall which enhances the ability of the lung to heal itself and here we are once more with a little miracle that is keeping Jhaysonn in the the race. What a marvelous wonder!
Our plan remains to bring him home so we can administer the MSC treatments that Mayo cannot do because of their efficacy issues. We are diligently looking for another ventilator that will do the job, but interestingly enough the pressures that were so high and dissuaded some ventilator companies, is now also coming down little by little. If we can reach a pressure of 40, we are back on to get the VOCSN machine.
We want to thank Jhaysonn’s friends who have been coming in from all around the world to see him. This week his brother Matthew and wife Leilani, Henry and Jamie, Lauren and Bulent, Julietta, Kyle, Andy, Brittany and the River City Church folks, so many of you who continue to hold Jhaysonn up in prayer. Thank You!
Soo, now what?
Keep Praying, its working!
Blessings, Ron & Theresa, Jhayson & Matthew.
Julietta with Jhaysonn
Since Jhaysonn received his mesenchymal stem cell transplant (MSC) we are in a waiting game. Breathing is still difficult, walking is still laborious, loneliness is still strong but his Faith remains strong! Not sure how to say this, but Theresa and me are in a constant state of expectation and fear over what may be around the corner. Although we spend many hours in prayer and belief ourselves, after nearly nine years of this journey we must continue to fight that sense of fear. Fear that we know is not warranted as a believer, but fear that what we want may not be what God wants. We expect that He wants what we want but there is always that insecurity of our humanly frail existence tugging away at us. So, we turn all of this and lay it at the cross for Jesus to handle. Without this simple act, we would not be able to continue. Looking at his promise of resurrection serves as the fuel to continue and never give in or give up. We trust that He is in control and that the doctors are a part of this tapestry.
So now you know, straight forward, no holds barred, we are in total trust mode. Trust that the free gift we are given, simple and unfettered, no labor involved, no hardship on us to give, no sweat that we must provide; a gift where all that is required is heartfelt faith. That one person, truly amazing person who was tortured and bound for all of us to see, did one act and allowed his blood be spilled in forgiveness, establishing a freely given gift for us and those so many who witnessed his feet walk again.
We continue to pray that Jhaysonn will play his guitar once again.
:-) Romans 5:18
5/29/17 - This upcoming Wednesday at around 11am Jhaysonn will be receiving the long fought for MSC treatment that could change everything. Mesenchymal Stem Cells. The potential of these cells ability to repair damage in the human body is an amazing confirmation of how powerful God is and how He has designed us. For Jhaysonn this could mean a return to life, a chance to start again, the miracle he has longed for.
Please pray fervently that this is the beginning of a new life for your friend, our son, brother.
Blessings to all of you for sharing this journey with us and your continued support.
4/27/17 - On a good day our son gets up very slowly and painfully since pretty much all his systems are just not up to it. On the good days it feels like there is hope and possibility, on the bad days we just worry, try to sleep, stay positive and pray constantly.
As you know from my last post we have been waiting and waiting for the FDA to approve Jhaysonns MSC treatment. A new kind of stem cell call Mesenchymal stem cells. These cells are new technology found in our bodies where this particular cell can create a number of different cells that can repair damaged cells.
The problem now is that Mayo is having difficulties growing cells and getting funding for Jhaysonn. There is one opportunity that we have all agreed upon: find another source and money to get treatment, we cannot wait much longer.
Jhaysonns choice is a place called StemGenex in San Diego, CA. These folks have done the hard work of research, trials and have had many success stories patients. Their protocol involves inhaled and transfused MSC's. And as you know, Jhaysonn being the information thirsty guy he is, has reached a point where we are preparing applications etc. to get funding in place.
The hard part is getting $25000 put together. So, we are setting up fundraising again for the cost of the treatment at $15,500 and travel expenses that involve renting a small RV (he cannot fly), gas at 12 mpg :-o, and expenses to take many O2 tanks, organics, meds, equipment, hotels for the four week trip (one week there, one week stay, one week back and a contingent week). Please feel free to donate here in the meantime while I build the GoFundMe site.
Any questions feel free to reach us at email@example.com we will respond as soon as possible or call you if you wish to leave a number. One of us will call you back.
Blessings, and Keep Praying!
Jhaysonn, Mom & Dad
2/23/17 - Well, I know it has been a long time since I last made an entry. Only thing I know to say is that our buddy although still alive, is having a tough time breathing and getting around. In fact I think the reason I have had a tough time writing began when the docs said he is in last stage. When I read the report that said so I froze, dropped to my knees and asked God to please tell me when he will be healed, what are you waiting for God?
The answer I got was, "I am here and I have got this, trust Me, be patient, let my works be manifest in Jhaysonn to the fullest". It has taken me this long to understand the message. I am restored in the belief that Jesus advocates for Jhaysonn even though round the clock oxygen, bi-pap machine, 263 doctors appointments for 2016, more meds than I can count, infections, ER visits, a spinal tap, and the endless lists of things he needs, that God continues to provide what Jhaysonn needs. His church, the prayer army and so many friends continue to help and support this family.
All I can say is, Thank YOU Holy Spirit and everyone who hears the call to help. You are the heroes of God's Will.
Blessings, to all. More to come...
08/21/2016 (Schedule Change) - There is a new possibility that has come to light that may mean the difference between being healed or getting a lung transplant. It seems that a scientist from China has discovered a method to heal the Bronchiolitis Obliterans that is slowly robbing Jhaysonn's ability to breathe. The report is called, "Allogeneic Mesenchymal Stem Cells Injections for the Treatment of Bronchiolitis Obliterans Syndrome". We have reached out to the lead doctor in China but have not heard back. In the meantime we have given Jhaysonns doctors the research paper. They have agreed to meet as a team to see if they can bring this procedure to the US through their networks.
Jhaysonn needs 5 prayers:
05/15/16 - A lot has been going on since my last post. Jhaysonn is amazing. Although having to go to the emergency room a few times in the last two months he remains resilient and committed to finding a way to beat this thing. He started looking at lung transplants more deeply since the doctors have suggested that he is in end-stage and his breathing is getting more and more difficult. In combination he uses a bi-pap most nights and oxygen during the day, still works hard to move around and make lunch from time to time, but his spirit to keep going is infallible and something to admire. Jhaysonn is so special in so many ways even after seven years of struggle. Am amazing feat by all accounts considering the severity of all that ails him having come on board since the stem cell transplant.
The Bronchiolitis Obliterans Syndrome (BOS) is the main culprit for reducing his lung capacity to the point now where we must get approval for a lung transplant. Initially he was rejected as a candidate for transplant due to his weight and general condition, so he has dedicated himself by having a feeding tube inserted into his stomach and has gained enough weight to visit with Florida Hospital in Orlando. So, as usual I ask that you join Jhaysonn's Prayer Army if you have not already done so and KEEP PRAYING!
Blessings to all of you who remain faithful that God will provide the answer for our son and your families. In Jesus name, thank you.
My hands filling the shape of Jhaysonn’s back rolling off his shoulder blades, spine and ribs is like a roller coaster ride. The deep caverns and tall peaks of his now 100 lb. body freaks me out, and motivates me to push ever harder to find a way to get help with one of the many new advances in gene therapy. Forty letters and emails having sent to date, without a response, has developed into a new strategy to try and get someone with more of a worldly status to hear our story and then maybe pick up the phone to get one of these research companies to pay attention to my son. I can’t stand by and watch Jhaysonn suffocate in front of my eyes. We have to find a way to stop the GVHD from taking him.
So many advancements since the CRISPR technology was released has produced huge results identifying DNA strands that lead to disease. However, getting these people to look at Jhaysonn is like trying to get a lions attention while feasting on its kill. Terrible thing it is that everything boils down to money and influence.
So I am asking anyone who reads this that if you are, or know someone, who has social influence from actors, authors, musicians to the wealthy, politicians and industry leaders.. please pass our story along.
I am not sure how much longer Jhaysonn’s body can withstand the damage he suffers from GVHD. All I know is that I fear him breathing through a straw, gasping each day, and no end in sight from the doctors perspective. Just more drugs, more equipment, no solutions.
12/10/15 - It seems that Buzz's (nickname :-) lab tests and resulting pathology reports are showing markers for what is known as PTLD, or Posttransplant Lymphoproliferative Disease. A suspicion that because of the immuno-suppression for a number of years that considering a lung replacement is not possible. This means that in five years they may look at the possibility, however in the meantime they have to figure out if this condition is developing or not. So, they cannot consider use of stronger immuno suppressing drugs that would arise from a transplant. More immune suppression produces more problems. Surely we do not want that!
So I am on the quest to get Cellectis or any other research institution to commit into discovering the T-Cell expression for lung scarring and/or GVHD and splice out the trigger from his DNA much as they did to save that young child from certain death. I am afraid I am going to need everyone to help by thinking about this and praying that I find the right scientist connected to a study where Jhaysonn can have the necessary evaluations to see if this is possible. And the beat goes on... Pray , pray, pray. :-)
Jhaysonn is having greater and greater trouble breathing and we are at a point where conventional medicine is just not able to heal him. Years of drugs, treatments, bronch's, and countless testing have not brought this entire ordeal to a place where Jhaysonn can live a normal life without coughing and gasping for air. In fact if his lung deterioration from GVHD is not stopped, I don't even want to consider it. In the meantime, walking is difficult, talking for extended periods is difficult, and those simple acts of life we take for granted are just not there for him. So, having said that, we always look to God (and our brothers and sisters in Christ) for answers, and recently it seems that science (for which is a part of 'subduing' the earth.. and every living thing that moves upon it. Gen: 1-28), may have been subdued as it were, with a significant step in the direction of genomic medicine. A young child with terminal leukemia appears to have been healed by genetically modifying a gene sequence that expressed the disease. So, I am once again on the hunt for a way to save his life by tracing and attempting to make contact with those on the cutting edge of medicine. Please join me in prayer to connect with those whom God sends to assist us with this new challenge. We need all the prayers we can muster.
9/15/15 - Been quiet for a while mainly because of work but lately I have been struck by how deep loneliness can be. Jhaysonn had an opportunity to connect with a young lady recently, although short lived, the experience brought into light for me how difficult chronic disease is on the mind and spirit.
Jhaysonn is probably the strongest person I have ever known to endure nearly seven years of fighting with cancer, and bronchiolitis obliterans, and the effects of a failed stem cell transplant. It is amazing to behold how resilient he has shown to be and how blinded I have been toward a basic human need we all have. But the reality of having a relationship with the person and the chronic disease are stark and sometimes hared to deal with. Never the less true love does not arrive by finding the perfect person, but by seeing an imperfect person perfectly.
Although Jhaysonn's friends try to stay in touch while their lives roll out, there are plenty of social networking opportunities, and Mom and Dad are here... what I did not realize is how deep the sense of loneliness can be even when there are so many around who do love you. Factor in living life in your room and doctors offices year in and year out, it is not enough for friends and parents to love even as intense as that might be. I remembered that to be found, connect, and be loved, well... is quite another thing whether you are sick or not.
I can remember when I was a young man yearning to meet someone I could spend time with; I remember when Theresa and I fell in love and the wonderful foundation that has grown into a 36 year marriage; I can remember the profound sense of loneliness I used to feel before I found my soul-mate. I also remembered how love can become so abstract against all the other things distracting our lives that I missed how my son feels when the love of a woman is absent. For that I feel ashamed because I was blinded by his resilience and determination to live, but forgetting how difficult it is when dealing with matters of the heart.
I remember now how that emptiness just never leaves you until again that day when the sun rises in another's heart for you.
So I pray... Love is the best thing we do as humans.
7/9/15 Sorry for the silence. Jhaysonn has actually had a pretty stable couple months until today. Found out that the polyps on his tongue which were removed a couple weeks ago are an additional virus called Epstein-Barr virus, that although common and associated with Hodkin's Lymphoma, can evolve into additional cancers. Estimates are that in the US Some 200,000 cancer cases per year are thought to be attributable to EBV. Scary, considering that Jhaysonn has been in remission from cancer for three years now.
Of course we pray that this too shall be defeated and no additional cancers arise, that he will continue to be covered by God's Grace. Please continue to pray for Jhaysonn, and if you would like to help him financially, please click on the Provisions button above. As you can imagine, seven years in this battle makes for many needs. Thanks again for your prayers.
4/15 - Over 12,000 miles on the road for hospital and NIH visits, ten inches of prescription pages and a mountain of receipts for co-pays, organic foods, vitamins, eye meds, equipment, organic cleaning supplies, lots of vinegar, syringes, masks and gloves. The list is almost endless. All of which we would do over and over again to provide our son with every opportunity to survive and live a happy life once more.
Thanks to you and all those who continue to support and pray for Jhaysonn as he continues on.
3/15 - Time travel defined, may be the time between a time when your life turns in a dramatic way and everything related to that time is jarred into another life, another reality. It defines us with a new time line foreign to the one we walked, new in the way we think, and strange in the manner we live from that point forward. Time, where one line terminates and another begins, struggling to tear away from what was or could have been. A dance in lockstep staring at each other, twirling, dipping, sliding into an unknown future where it is out of grasp but teases us to go on. Stepping and pushing to find the grace between the lines... striving into moments when we can grasp, connect and create anew from both realities when possibility was not just a dream to craft a new reality. Torn is time passing, tomorrow is time we tend, today is the day we try to mend.
To both my son's Indomitable Spirits, I am ever so grateful you Jhaysonn and you Matthew. May your time together be that which creates new possibilities.
02/12/15 - Cannot begin to imagine what is ahead of us at this point, the search to find a lung transplant has begun with Jhaysonn being transferred to the transplant unit. A new phase of testing, research, getting on the registry, finding a lung amongst what is estimated to be a 7,000 patient wait in line. Not sure what to feel but we trust you God that whatever is needed will arrive through you guiding our efforts and trust in you.
2/20/15 - Humble, humbling pie it is to see our son suffer and continue the battle day in and day out. It is a miracle in of itself that he persists and persists and never loses faith. We are so humbled by this man, boy, our son who is stuck in the limbo of beginning this struggle since his 23rd birthday. Amazing Grace is the only reason that we went from watching him suffocate, certain that this was it, too much illness and too many drugs... it was a certain sinking feeling dragging on me for sure specially when the pulmonologist came in determined to talk about intubation and getting Jhaysonn's wish list done. So, a long month of coughing, breathing through what looks like a straw glued to his lips and then the emergency room rush, admission and then eight days later, home again. Seeing his condition scared everyone and yet we cannot help but wonder why all this? - it is only by Grace that this is possible. Thank you Jesus. We await your full healing of our son.
In four days we went from sucking a straw for air to obvious damage growing faster than anyone expected or knew..and yet here he is trusting God again. From right to left, in four days he went from a little damage to cavitation as you can see.
12/24/14 - Christmas is a time of thanks extended, where we are ever grateful for Christ being born but also for his great sacrifice for us on that terrible cross, for without it, the greatest event in history would not have persisted to this day. The impact of his resurrection so hard to fathom but with faith, gives us hope that one day we will be restored as He was after being so terribly tortured.
It is for this reason that we know all is possible with Christ as Jhaysonn danced back and forth in and out of the hospital these past two weeks, his blood pressure dropping to 83 on Christmas day, a bad reaction to Levaquin and what we thought was a heart attack last week, generally meant having to spend the holiday ensuring our son keeps going. It is for but for the Grace of God that we know, it is only by His Grace by which it is given through Christ, that Jhaysonn returned home once again to claim another day.
Thanking you always for your prayers that so much play a part in this rehearsal we call life.
Blessings to you.
12/14/14 - Monday night after work Jhaysonn was complaining of chest pains. Took him to the emergency room thinking he was having a heart attack that I felt after six years of caustic infusions and meds certainly must be damaging who knows what. After a chest x-ray and CT they discovered an air pocket in his mediastinum (body cavity) along his esophagus and neck. Apparently there is a leak coming from the esophagus or lungs. After three CT's an endoscopy and various x-rays, they were unable to identify where the leak is coming from. We brought him home this Friday inconclusive and scheduled for a number of additional follow up visits with specialists. Just another day at the farm. Please continue to pray.
11/02/2014 - What once was a long wait for a dream to come true, now seems too close to realize. About a month or so ago Jhaysonn had visit with his musical hero (whom I cannot reveal) in West Palm Beach by a man whom by all accounts is a rock-and-roll rebel since his youth, and remains a major music influence in the entertainment industry as a trend-setter ...now composer and Oscar winning film score writer, producer, and currently a young father of two boys. How we change with fatherhood :-)
This story begins six days prior to Jhaysonn's bone marrow transplant. Actually about a week before, I think it was Thursday prior during a time when Theresa and I were very distraught about how much Jhaysonn was suffering, Theresa mentioned that his musical icon X might be just the inspiration to keep fighting. I immediately got on the phone and after days of searching I found the artist's agent and called, the agent asked me to send an email with the particulars. About two hours later he had me call and to my surprise the artist agreed to call Jhaysonn Thursday the 17th of February, 2011, three days before receiving an Oscar award for his work on a film. Our goal was to motivate our son beyond anything we could possibly do ourselves.
The artist spent twenty-five minutes on the phone with Jhaysonn, who could barely sit up in bed, and proceeded to invite Jhaysonn to meet one day. On August 11th, 2014 three years and six months later this past June, Jhaysonn got his chance to meet the man backstage prior to performing in South Florida. The artist gave Jhaysonn a signed guitar and an additional invitation to visit with him at his studio in Los Angeles to share stories about a piece of software they both use. Wow!
This is a once in a lifetime event and as much as the family wants to make this adventure happen for our ailing son, it is not an easy task on many levels but could be such a motivator if we can give him this holiday gift to look forward to. Aside from the many obvious good reasons, this kind of inspirational experience would bring Jhaysonn another view of the horizon that might result in a re-dedication to his music. This truly is a once in a lifetime event for Jhaysonn.
So we are planning every aspect of such a long trip that involves everything from routing every hospital on the way, every doctor with GVHD experience, making room for oxygen tanks, medicine storage, organic foods and a mountain of other things. Since Jhaysonn cannot travel commercially we are looking at renting a small RV from CruiseAmerica that will have to be totally disinfected before Jhaysonn's steps foot into it. There is a lot of work to do in preparation.
Thank you for considering to participate in this adventure with Jhaysonn. Having this opportunity can bring some life back into the picture for him in a meaningful way.
God Bless you.
10/08/2014 - Endurance takes many forms particulary noticed slowly when observed over a long period of time. I am always amazed at the courage our son demonstrates. Nothing dramatic but a sure and consistent level of care he demonstrates with diligent disciplined and timely cycles each day. This I have grown to cherish as a wonderful thing that confirms each day he lives. He is never too tired or too sick to make sure he takes all (the multitude) of medicines and goes to every appointment with his doctors. One would think that getting out of the house might be a motivator, or just seeing the sun, or breathing fresh air. In his case it is none of these, Jhaysonn cannot expose himself to UV, involve himself with other people, and as for the fresh air well, he certainly gasps for it and loves each breath. It is a Blessing to see him rise in the morning and be around in the evening when I get home from work. Each day is a great and wonderful expectation that God keeps him alive and going. We are grateful for every moment, every laborious uttering and step he takes. These are the things that are precious.
9/05/2014 - I must admit that I am feeling a little down trodden as we learn that our son must now face possible surgery to patch a hole in his heart that has developed. As we wait to hear for a plan from the doctors I am asking that everyone who sees this post renew prayers for Jhaysonn. I know it has been a long time this goes on but our faith cannot be daunted by shortcomings that arise from time to time. Jhaysonn is still with us by the power of God and his witness grows stronger for he day when he is finally healed, ready to tell the world how God's hand has released him from this prison of illness. Those bars will be cut, those walls that contain him will come down and he will play his music once again. Please join me with fervent prayers once again that loudly proclaim Jesus is in charge!
8/20/2014 - Jhaysonn has to be the strongest person I have ever known. His faith endures as diligent as these countless drugs and regimens he undergoes. Theresa and I just want to say Thank You God for keeping us together and giving us our sons. We are surrendered in Christ and yield to Your Will confident in your Grace and Mercy upon us, for those who seek you out and for those who do not.
7/20/2014 - Jhaysonn's older brother Matthew is back from the sandbox! Yaay! As always it is a real treat to see him after spending time overseas. The Army keeps him busy of course any moment we get to see him and his wife is always special. If you have been following our story you may recall that Matthew donated his stem cells for his brother, we continue to remain faithful that those 'Army Strong' DNA strands will eventually take over.
Jhaysonn is basically a shut in by his immune system failures twenty four hours a day and it's no fun. So having Matt and Lei around gets Jhaysonn moving and talking more than usual which is also a treat for us. Just having the family together is a real injection of needed energy that we are all grateful for. Thank you for your service Matthew!
As always I ask that Jhaysonn's Prayer Army also keep praying for Jhaysonn's lungs to gain some additional capacity, they are still holding at 19% making it very difficult for him to take a needed walk once in a while. The GVHD remains a serious problem and needs to be abated if Jhaysonn is to win this battle...so keep the prayers going and expect a miracle :-). Blessings to you all for your kindness and the Love shown toward our family, your prayers are important.
May not look like much but it is absolutely engaging for Mom & Dad :-)
6/28/2014 - Breathing difficulty is such a hard thing to watch in the first place, and when Jhaysonn chokes while eating you have to do something right? But what if the response is routine and due to the graft vs. host disease? Do you jump up each time and rush, observe and wait? It's about being on the ready for Theresa while I am at work and in-turn when I am home. For me it's easier since I am in and out, but for my saintly wife Theresa who has been watching her son deteriorate in slow motion, I can only imagine how she is able to maintain a level head twenty four hours a day for almost six years. But for me each time he tosses up a meal because it gets caught in his esophagus I am so uneasy and anxious, then to watch the labored breathing from our once strong son that now gets his work out by walking and talking, and that's enough.
So we stand by on the ready most of the time keeping faithful that Jhaysonn's healing is at hand and persist in prayer. Dear God hear our prayers and those of the many who are raise their voices to you in support of Jhaysonn in their hearts. Hear his friends, acquaintances who have agreed to pray and all those who we have no idea about who have joined in the Prayer Army... hear our prayers and send your healing message to our son. As always we trust in you. Job 13:27
6/12/2014 - Jhaysonn and his Mom got back from the NIH last Thursday with news that Jhaysonns infections are improving but the battle against the GVHD is not so good. On the other hand he has gained two pounds, whoohoo! Don't know what to think at this point, one doctor is now contradicting another claiming that they are not sharing notes efficiently, asking us to make sure we get them? God knows although we are very happy to have the NIH involved with their teams, however, managing the information flow between the local doctors and the NIH is like dealing with children sometimes. He said she said is at an all time high, and this is not to mention that the team lead (a very, very, young person with amazing credentials), lost it in front of Jhaysonn. The doctor and her interns complaining loudly that communication via email to her is not possible any further. Weird since it was requested in the first place. oOOOkay then...were having a bad day. No communication with patient. Hmm great patient bedside manner from the kid in the white coat. So now we wait to see what the local folks will brew up as an alternative to control oh yes, the graft vs. host disease that is trying to reject Jhaysonns lungs. Boy, not surprising that according to the OECD Health Statistics, 2013 we can count 26 countries that exceed our life expectancy, and among those countries, the median health care expenditures per capita is about half of that in the United States. Who says we don't need healthcare reform again? They must not be sick.
5/30/2014 - Getting ready for another trip to the NIH in Baltimore. Not sure how to feel sometimes about this continuing struggle . Then there are times when God brings up some of the greatest reasons to endure. While listening to a young lady in front of the congregation speak about her graduation day, she brought in the word 'endure' from a few passages in the Bible but the one that struck me is Romans 15:4 "For everything that was written in the past was written to teach us, so that through the endurance taught in the Scriptures and the encouragement they provide we might have hope". Yes at the end of the day it is hope in the resurrection that all hope is embodied. Jesus who held his hand out to many and then suffered immeasurable pain endured the cross so we could see the truth of our lives and the meaning of Grace in His act of sacrifice for us. And yes there is always trust that He who endured understands our pain all too well. Thank you Jesus for reminding me that through you all things are indeed possible. We pray and continue to trust your hand upon our son.
5/11/2014 - Wishing we could have the best GVH doctors in the world. Dear Jesus, we look for you each day and trust that your power shall speak Talya Cumi for our son.
In Trouble Again
3/18/14 - I have not been making posts because shortly after my last post at jhaysonnscuredotcom he began a slow progression to what is now another full blown challenge. Afraid to give more bad news but the last couple months have been pretty tough and have culminated in Jhaysonn being admitted last night because his breathing is so bad that he looked like he is sucking air through a straw. Long story short...this past weekend was scary but now he has his doctors doing what they do best. So for now we wait for the biopsies and many tests to determine if he has pulmonary lymphoma. They did a specific biopsy to check for this so we need your prayers against it specifically.
I don't need to tell you how disappointed we are all about how much struggle Jhaysonn has endured, but we remain faithful that God hears our prayers, all of our prayers, that there is power in prayer and ask you once more that you dig deep, revitalize Jhaysonn's Prayer army through your contacts and help us pray long and hard that Jhaysonn overcomes this seemingly unending nightmare and that his healing is at hand. No more lymphoma, no more difficulties, no more setbacks, healing for this precious person in Jesus Name I pray! - Please join us and focus your prayers. Blessings, Ron.
The Beginning of a New Era
12/24/13 - I pray that everyone is ready for the blessing that is Jesus and what he did for us. To think that a child such as Jesus born to this earth would agree to later die a horrible death and willingly take on our shortcomings, that too often are as dark as the death he had to endure, brings to mind that whatever we must endure here and now is nothing compared to having your flesh ripped from your body by metal tipped whips. By no means a worthy comparison...but for us our family, to watch the physical struggles our son must continue to endure and now losing his breath to 26% capacity is just as horrible and scary. If we did not have Jesus to reassure us that his resurrection is our salvation, witnessing our son suffer so would have defeated us by now after nearly six years of struggle. So as we watch him having to travel back and forth to the NIH every three weeks for experiment this and experiment that...and then to have the fungal infection and Mycobacterium Abscessus return again, seeing his picc line moved to his neck only reaffirms that our prayers are vital to the process of his healing. God continues to work through the hands of His creation to heal our son. Thus we ask that Jhaysonn's Prayer army continue on strong and with new fervor to ensure his name continues to be heard by God, to hear all of us calling for a new beginning, for our son to be given the chance to proclaim the power of God! Thank you for your great kindness and continued prayers for Jhaysonn, we look forward to the day he surprises everyone with a complete healing come from God.
Thank you Jesus for Another Year
11/28/13 - Thank you Jesus for another year with Jhaysonn. Thank you for your Holy Spirit watching over us and providing that what is needed. Thank you for all those who have our son in their hearts willing to send you prayers and agreement for his healing, and most of all, thank you for our family, Theresa, Matthew, Jhaysonn and Ron for putting us together in your Grace and helping us see your works. And thank you for keeping Matthew safe while he protects our country.
May everyone who reads this know how much we appreciate your holding up our son and this family to God for his continued and complete protection and healing of His gifts to us in our sons.
Blessings to all.
On The Road Again...Calling the Prayer Army to Gather!
11/2/13 - Jhaysonn and Mom are on their way back from the NIH and there is some good news! The doctors have taken him off the amikacin and the linezolid and are scheduling a CT in two weeks to allow his system to recover and determine if the lung infections are gone. We are praying that these infections are finished and we can now move on to the graft vs. host problem. The lead doctor characterized the graft vs. host disease in his lungs as, "uncommon and highly fatal" because of his extreme immunocompromised state, which of course scared us. But, even though there is concern, I see a light in Jhaysonn's eyes I have not seen in a while. He is talking more and seems more alive even though his breathing is labored. I don't know...but I personally feel that there is something good going to happen soon and Jhaysonn will surprise everyone with a total recovery. All we have to do is keep the faith up and molds down :-) clean, clean, clean...thank God for Lysol.
Keep the prayers coming!
10/2/13 - They are back! The report is that Jhaysonn's lung capacity has dropped to 85% so they have given him a nebulizer to aspirate the amikacin rather than doing it intravenously as before. Apparently they are still using the injectable solution but by adding saline solution to it, then it becomes useable in a nebulizer treatment. Never heard that before... So, added to the list now is montelukast/singulair that brings the drug total to eighteen different meds. Always worried about mental health and hearing loss from all these drugs, the long haul Jhaysonn has had to endure seems to expand as the side effect these marvels of science keeps growing.
The good news though that has come out of this last visit is that the fungus infection is much better and improving. Thank God! Once the bacterial infection is gone from his lungs too then they can finally begin to deal with the bronchiolitis obliterans. Seems so contrary to logic specially when the bronchiolitis is what is destroying his lungs, in any event we remain faithful that Jhaysonn will be given his life back and his body will be totally healed one day. Baackk to the NIH...Baackk to the NIH, will probably be the week of 10/20 as it looks now.
09/21/13 - As we prepare for another trip to the NIH, I am reminded of the kindness and prayers that so many of you provide our family. Prayers that sustain us, prayers that we know produce results. Jhaysonn is living proof of that even through all of the current trials. So this time they leave for ten days and should be back by the thirtieth. The doctors at the NIH are exploring what to do about the GVHD, test for the fungal and bacterial infections Aspergillosis, M. Abscessus, and ultimately deal with the Bronchiolitis Obliterans. Lot's on the plate as usual but we are hopeful that good news is coming in the form of progress from the last month of IV treatments. I am still trying to figure out how to dispose of the five grocery bags full of empty IV setups. Please continue to pray for a good result.
One more thing. To avoid having to travel back and forth every two weeks for the rest of the year, we are looking for a house sitting situation in Bethesda, MD that Theresa and Jhaysonn can stay at. A corporate unit at an apartment complex, or an vacant condo that someone might be willing to donate. We can handle the utilities but could really use a place to stay until Christmas or so. This will help with the tremendous expense with travel that wears Jhaysonn down each time anyway. Fourteen hundred miles there and back takes a toll since he is unable to fly anymore due to the compressed air and germ laden tubes with wings they are. Until his immune system recovers he must ride on the rubber rollers, so if you know anyone that might be willing to help, please let us know.
09/05/13 - Sorry for the silence but last week was a fury of problems and events that took all my attention to get through. Monday night the 26th, two days before Mom and Jhaysonn had to leave for the NIH I discovered a leak coming from the back of the engine. Turns out it was the oil cooler, so I took a day off from work to get it done, tried my best but could not get to one (stinking' :-) bolt and ended up having to pay for the repairs. Off they go on Wednesday morning and just about two hours out of Bethesda the car shudders and stops. Theresa calls me in a panic sitting on I-95 with Jhaysonn, his IV meds, IV stand, coolers etc. etc.
To make a long story short, she finds a mechanic in Mechanicsville, PA (who says God doesn't have a sense of humor?), and the guy turns out to be an angel because I thought the coil pack that went out in cylinder two was going to be astronomically expensive. But get this...When the NIH learned that they were stranded, they had someone drive the two hours to come and load them up and get them there. What a Blessing! So as it turns out they made it okay, whew. Add to this that the IV meds are starting to show progress in his lungs controlling the growth and, all things being equal, it was a tiring 1400 miles but both my son and wife...and the Car made it back safely.
Now on to the next trip coming up on the 24th of September, and henceforth they on out he will have to go back every two weeks for the next few months while they attempt to control the GVH. Problematic to say the least since the expense is mounting fast. So if anyone reading this knows of a property owner who needs a house sitter or a condo sitter for a few months, we would greatly appreciate the referral.
Must close this by saying that God provides confirmations on so many levels. Yesterday I went to the mini-market and there is this old Nigerian fellow in front of me standing in line trying to buy a gas can so he could put some gas in his car across the street. Troublesome it was for him to open the new fangled bottle, so I offered some help, got it open and we departed...I noticed while walking to my car that he was going to collect his gas at the pump but someone had pulled into that spot. He casually got between their car and the pump and proceeded to get this dollar or two worth.
The occupants were not very nice, so I thought I best stand by my car and observe the situation just in case. After a few minutes he started for his car across the street and I asked him if he was ok? Only thing he said to me was to ask if I would help him put the gas in the tank. I did so, and while he stood there he said, "God is good, he made me run out of gas across the street from a gas station". How profound a statement that was. God places us even when we run out of gas at a place where we can always fill up if we just look at the surroundings. Your know what this guys name was? Samson, and Samson had the most blood red eyes I have ever seen!! (Judges:16)
Off to the NIH
08/27/13 - Oookay, Jhaysonn and Mom are off in the morning back to the hospital in Bethesda, MD for what may be an extended stay. Jhaysonn is having more and more difficulty breathing, is very tired and has not done a thing with his music since he has been on the IV treatments. He says his vision is impaired from the meds and is generally just feeling icky. So after many emails and discussions with the team in Maryland, Jhaysonn heads back to be poked, prodded and x-rayed some more. I think this is approaching the Scanalabathon record of some kind. I think what bothers me more this time is that I cannot be by my son's side and support for my wife...God's plan will be revealed..
The Day of the Drug
08/18/2013 - I am disheartened at watching Jhaysonn's demeanor change as the toll of the treatments 8-1-8 twenty four hours a day are taking on him. The cocktail of drugs he takes is just mind blowing, each with their own contraindications, and his breathing is still pretty shallow and labored.
Voriconazole, Imipenem, Azithromycin, Linezolid, Sulfamethoxazole, Levofloxacinn, Omeprazole, Fluconazole, Flovent, Prednisone, Restasis, Oracea, Levothyroxine, Spiriva, Hydro eye, Potassium CL, Pyridoxine, folic acid and vitamins. I put the list here so everyone who reads this can pray for specific protections and healing for Jhaysonn, and that these drugs do no damage beyond their intended use.. My God! Dear Lord, may your hand be on Jhaysonn to promote his healing and protect him from all this stuff. Bring his healing to bear soon, I have the centurion's faith Lord.
08/01/13 - We attempted getting the port put in today but there was some complication with equipment that required a delay so tomorrow he will be getting a central line instead. Also found out that the CDIFF has returned to join the party that arises as a complication from high doses of anti-biotics however Jhaysonn is keeping in good spirits despite these new challenges. Well that's about all for today, am pretty tired so keeping this short tonight. Keep praying, prayer works, and God Bless all of you out there praying for Jhaysonn.
07/31/13 - Dad writes...Jhaysonn's PICC line is causing pain and may be a problem so he is back tomorrow to get a port put back in his chest once more. Kind of tough on the schedule keeping up with the infusions at home. So far Theresa has not slept much since the cycle is 6-12-6-12. It takes an hour to set up and clean up after and 30 minutes a bag so she is basically sleeping 4-6-4-6 in between taking Jhaysonn back and forth to the hospital for labs etc. It's a full time job needless to say. 'Superwoman' doesn't say it adequately. Prayer works, keep them going :-)))
07/28/13 - Dad writes...After a week at the NIH we now have a better idea of the situation and how our son again is faced with another setback. Not sure what the purpose is but we remain faithful that once again God will come to bear and bring this nightmare for Jhaysonn where His purpose is revealed. It seems that two items have arisen to present this new challenge. The first is called Aspergillosis, a fungal infection that we combat every day without consequence. However for Jhaysonn whose immune system remains lowered from the transplant, another matter all together. The second is a micro bacterium in the Tuberculosis family that took some time to determine due to its similarities. A DNA examination of the cells identified it as M. Abscessus. As you can tell from reading the links, this has now escalated to a degree where his life again is in danger if the expansion of these infections are not arrested or eliminated..
Consequently Jhaysonn will be living with a PICC line for the next two months 24 hours a day for intravenous treatments with two drugs, one of which he will be hallucinating with, Oh JOY!!
So, in early September Jhaysonn will return to thee NIH for evaluation and to continue participating in two clinical trails for the Bronchiolitis Obliterans and the Graft vs. Host disease control but...first things first of course. I am afraid that he and Mom will be travelling back and forth with some frequency..
Needless to say we are asking that Jhaysonn's Prayer Army gather once more and help him fight these attacks against him with faith and strength under God's protections (Psalms: 91:3-4), and that this is once and for all put down by the mighty power of God and his angels, and that by the power given to us in Faith, it is done in Jesus Name! (Matt: 8:13)