Diagnosis: 2/18/2009 Bone Marrow Transplant Birthday:
Leave Jhaysonn a Post at his WordPress site.
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
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
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
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
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
test for the fungal and bacterial infections
Abscessus, and ultimately deal with the
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..
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
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
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
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:
Further Notes: Through these past five 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 fifteen months and however bittersweet
due to the additional complications we remain faithful that better days are
coming for Jhaysonn one day.
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
hands on the guitar will once more play again!!
We are confident in the Lord that Jhaysonn will not succumb to these new
life threatening challenges and that this too shall be defeated as his cancer was in Jesus
name. We refuse to believe that God would heal the cancer and then
allow the battle lost over something else...Please continue to pray, and if you would like to write
to Jhaysonn or help with his continued medical expenses please do so at the address shown below.
If you don't want a tax deduction you can make a direct
contribution through PayPal (no account setup is necessary).
For a Tax Deductible Contribution, please mail your donation to:
Jacksonville Centre of the Arts
P.O. Box 350405 Jacksonville, FL 32235
Please enter into the check
memo line: "Jhaysonn's Cure Fund"
(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.
You will receive an official confirmation from JCA.
_______________________________________________________________________ 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.
See the article at the Jacksonville
READ ARTICLE HERE ________________________________________
Mobile IV anyone?
At NIH, Jeez more needles.
Just another day at the (NIH) office :-))
Endurance and Faith
Jhaysonn on bike finding his feet but for the neuropathy.
Mom's first train ride (ever) to the NIH
Ground Control to Major Tom
Dad sneaks pictures all the time :-)
Making organic Budwig mix, yuk.
Aaah, outside, good.
Jhaysonn's Students in SOKO
Artist all the way, June 2007 was a great day.
Thank you for
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
When Jhaysonn left on his first real
job since graduation from Stetson University in 2007, then return home with a
rare case of Primary Refractory Hodgkin's Lymphoma; then having to endure thirty-eight months of what amounted to torture
for Jhaysonn, and then finally able to get a new treatment called
watching God's Tapestry unfold has been difficult, full of fear, and moments of
despair and wonder.
None the less and many remissions 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
Thank You and God Bless You for Your Thoughts
Prayers and Support.
(His hands hurt but there is always another way :-))
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."
18:28 For you will light my candle: the LORD my God will enlighten
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:
Hodgkin's Lymphoma chemotherapy info:
marrow stem cell transplant info:
Article on Chemotherapy Induced Peripheral
Here Article on Photopheresis
procedure for GVH:
Reach your State Representative's:
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.)