Jhaysonn's Cure Donation Fund

Diagnosis: 2/18/2009
Bone Marrow Transplant Birthday: 2/19/2011
First Full Remission Date: 5/1/2013
Lung Capacity (GVHD): 19%

 


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Click here: Jhaysonn

Matthew and Leilani's visit picks up our spirits

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 and any moments 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.

M&JM&L
May not look like much but it is absolutely engaging for us.  Blessings :-)

Eating, walking, talking... breathing.

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 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, I can only imagine how she is able to maintain a level head twenty four hours a day for almost six years along side her son.  But for me each time he tosses up a meal because it gets caught in his esophagus I am like so uneasy and anxious, and I watch the labored breathing that our once strong son gets his work out by walking and talking, pausing and taking a needed breath.

So we stand by on the ready most of the time keeping faithful that Jhaysonns 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, his friends, acquanatances who have agreed to pray and all those who we have no idea about... hear our prayers and send your healing message to our son.  As always we trust in you.  Job 13:27

It can be a hassle...

6/12/2014 - They 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 them 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, Theresa 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.

Can't Give In or Give Up...

5/30/2014 - Getting ready for another trip to the NIH in Baltimore.  Not sure how to feel sometimes about this continuing struggle to witness of my son.  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 immesurable 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.

Keeping Faith...

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 scarey 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.

NIH Blues

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.  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..

Samson

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)

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.  Kinda 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)

_______________________________________________________________________

Would You Like to Donate a dollar or two for Jhaysonn's Expenses?

Through these past six years coming up we have learned that the effects of cancer and the treatments do not stop after the cancer is gone.  The damage created from so much chemo, radiation and the stem cell transplant goes on for years.  Jhaysonn has been cancer free for nearly two years now but a bittersweet victory due to the additional complications with his organs being rejected resulting out of the bone marrow transplant.  The costs of keeping Jhaysonns' needs met along with the changing insurance environment guarantees that the struggle to maintain is not going to get easier as time goes on.

In any event however, Jhaysonn reminds us every day how wonderful he is and how his faith remains a beacon for all who know him.  What a lesson in endurance, courage, and focus on God's promises he is!  Jhaysonn deserves to go on and meet life again

Those beautiful hands on the guitar will once more play again!!

Thank you for your prayers and assistance.  Every penny donated is dedicated to offset Jhaysonn's care giving, special nutrition needs, medicines and doctors expenses.

PayPal Donations

If you don't want a tax deduction you can make a direct contribution through PayPal
(no account setup is necessary).


Would you prefer to mail a donation and get a tax deduction?

For a partially tax deductible contribution, please make your donation through our partner Jacksonville Centre of the Arts who will issue a tax letter to you confirming your donation.

  1. Include your return address.
  2. Fill out the 'pay to' line as: Jacksonville Centre of the Arts.
  3. Enter into the check memo line: Jhaysonn's Cure Fund
  4. The organization will process the donation on to Jhaysonn and issue you the tax deduction letter confirming the amount forwarded.
Mail checks to: Jacksonville Centre of the Arts
P.O. Box 350405
Jacksonville, FL 32235

(JCA is a 501(c)3 under the US Tax ID #31-1740457 and have agreed to process your donations and reply with confirmation to your address.  JCA is a Public Charity limited to 50% deductiblity status.

_______________________________________________________________________
By God's Grace!

Through the experience we are reminded of the Via Dolorosa and how Jesus established a key principle about our trials.  How many steps, strikes and beatings did Jesus take for us willingly and readily only then to forgive humanity?

At times we can feel the drain of the earthly life He must have felt so grievously;  but with every knee drop, every blood spattered moment, every cry... He never failed in the end to forgive, provide hope, and give us His story of Love, Compassion and Devotion by His actions and in turn gave us the gift of Grace.  A free gift to all; that by 'just believing' our own journey begins for us to see the real value of living.
 
NEWS RELEASES

Watch the broadcast at
First Coast News
ABC25, NBC12.
Jacksonville, FL.
VIEW BROADCAST HERE

See the article at the
Jacksonville Times Union
READ ARTICLE HERE



Guess Who's Figgies?
Guess whose figgies?

Its a waiting game
Keeping balanced
________________________________________

Mobile IV
Mobile IV anyone?

PiccAgain
A life with tubing...

More Chemo
At NIH, Jeez more needles.

Fun
Just another day at the office :-))

Endurance in it many forms
Endurance and Faith

Jhaysonn Therapy
Jhaysonn on bike finding his feet
to improve the neuropathy.

Mom's first train ride
Mom's first train ride (ever) to the NIH

Ground Control to Major Tom
Ground Control to Major Tom...

IV's three times a day
Dad sneaks pictures all the time :-)

Making Budwig 
Making organic Budwig mix, yuk.

Aah! 
Aaah, outside, good.

Jhay and Dad
Strength Striving In-Vivo. Cycle by cycle, by cycle, (55 of them) he stood back up, went back in.

Great nurses kept him going.
Great nurses kept him going.

Holding on
Holding on.

Jhaysonn's Students in SOKO
Jhaysonn's English Students in Daejeon, SOKO about a year after graduation.

Hushpuppies
Artist all the way...June 2007 graduation day was a great day.  We had no idea what was to follow for years and years and years to come.  It seems that there is no end in sight sometimes but God somehow keeps showing up to give us strength, hope and determination to keep going {:-)

Thank you for your support!

Just so you know if you are new to the site...  Since March of 2009 there have been a multitude of challenges we have had to undergo when Jhaysonn returned home from South Korea uninsurable.  From medicine to politics this journey has shown us the difference between the power of law and the power of God.

When Jhaysonn left on his first real job since graduation from Stetson University in 2007, then return home with a rare form of Primary Refractory Hodgkin's Lymphoma, and then having to endure thirty-eight months of what amounted to torture for Jhaysonn, and then finally able to get a new treatment called SGN35 (Adcetris), watching God's Tapestry unfold has been difficult, full of fear, and moments of despair and wonder.

Many remissions and relapses later the cancer finally went into what is now the longest remission period since March of 2009.  Although Jhaysonn is now in a rather difficult recovery period after all the damage done to his body, he is now able to look forward to a different phase of his life.  Point is, don't ever give up.  If you or a family member is suffering through something like this, keep heart, never give up, never give in and most of all stay in prayer.  God will guide you through this in a manner that only you will understand is his words for you.

Thank You and God Bless You for Your Thoughts, Prayers and Support.

Jhaysonn with Dr. Cabeza at Shands Cancer CenterJhaysonn's Beautiful Hands
The sweetest resident (Dr. Cabeza) taking a moment to raise a smile.
Jhaysonn playing his recital at high school Douglas Anderson School of the Arts.

 
Get Jhaysonn's Digital Music

(His hands hurt but there is always another way :-))
Listen to Jhaysonn's digital music


Listen to More Jhaysonn

Mom & Dad's Fave's
For our son:
Deut: 31:6 - Be strong and of good courage, do not fear nor be dismayed; for God, He is the One who goes with you.  He will not leave you
nor forsake you."

Psa 18:28 For you will light my candle: the LORD my God will enlighten my darkness.

Psa 18:29 For by thee I have run through a troop; and by my God have I leaped over a wall.

Other Links and Information:

What is Bronchiolitis Obliterans
Primary Refractory Hodgkin's Lymphoma chemotherapy info: Here
Bone marrow stem cell transplant info: Here
SGN-35/ADCETRIS info: Here
Article on Chemotherapy Induced Peripheral Neuropathy: Here
Article on Photopheresis procedure for GVH:  Here

Reach your State Representative's: Here
Reach your Senator's: Here

Save a Life, Give Blood!
If you are in the Gainesville area, please visit the Lifesouth Blood Center: Link Here
If you are in Jacksonville, please visit the Florida/Georgia Blood Alliance:  Link Here 
(We want to thank everyone who donated blood for Jhaysonn for his Bone Marrow Transplant.)


Thank You Senator John Thrasher for stepping up and joining the fight for Medicaid patient rights.

Thank You Tim Goldfarb CEO of Shands UF for your unending support and assistance finding methods to help those uninsured.

Jacksonville Centre of the Arts
Thank You!
JCA for helping Jhaysonn by providing tax-deductible contribution processing.


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