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
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 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...
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.
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
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..
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
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
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:
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
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
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.
If you don't want a tax deduction you can make a direct
contribution through PayPal
(no account setup is necessary).
Mail checks to:
Jacksonville Centre of the Arts
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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.
Include your return address.
Fill out the 'pay to' line as: Jacksonville Centre of the
- Enter into the check
memo line: Jhaysonn's Cure Fund
The organization will process the donation on to Jhaysonn
and issue you the tax deduction letter confirming the amount
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.