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)
When it all started...
First Coast News
Jacksonville Times Union Article
Contact family, (Jhaysonn, Ron or Theresa by clicking here.