No Small Thing

Jordan is having an uncomfortable couple of days. With Graft vs Host Disease (GVHD) in his stomach and intestines, Jordan's stomach is once again distended.  The doctors gave him steroids earlier than expected to keep the GVHD at bay, and Jordan is not enjoying the experience.  Even when Heidi tries to hold him, he shifts around until she puts him back in his crib.

While Jordan is struggling, the rest of our kids have started Hutch school, where they are taken on an adventure to the Space Needle, park, swimming hole, etc, each day throughout the summer. The school is funded by the Hutch Cancer Center and is primarily filled with kids and siblings going through cancer treatment.  We are grateful for this time to have our kids interact with others while Heidi and I have a few hours to spend time with Jordan, get some work done, or both.  These service programs and the people who staff them are another one of the tender mercies of the Lord.

Right now the greatest stress  is trying to balance what is really important with all that needs to be done.  The challenge of finding balance isn't new, but the increased clarity over what really matters makes time spent outside of family more of a distraction than anything else.  I have spent years filling my storehouse, so to speak, and I feel I need to spend more time filling my children with knowledge and love.

In the midst of this struggle, however, Heidi and I continue to be confident that the Lord knows what He is doing and is involved at every level.  Today, the lead immunologist told Heidi that the mold/fungus in Jordan's lungs has suddenly vanished.  A retest confirmed this.  He said, "I just have no way of explaining this"  since fungus in the lungs can take up to a year to clear with medication and never clears in less than 3 months.  "It just doesn't make sense."  Truly, the Lord is not simply far off, but also close at hand.  

As I attended church today I was once again reminded of the cause of these miracles as people told me how they continue to pray regularly for my son.  And I was reminded that I can always see miracles when I believe in God, believe God, and strive to live with integrity to the knowledge I have.  With that spiritual formula, I see God not as a distant overlord or a disinterested creator, but as what He is--Love.  Each  experience He provides or allows is only "bad" when I choose to make it a stumbling-block in my life.  Those I choose to learn and grow from are all Good and it is me, not God, that makes that determination; He always acts in Love.  

With Jordan and this experience, I choose to use this to become a better father, husband, employer, and human being.  The daily grind is still challenging but I have faith and hope, and that is no small thing.

Care Conference #4

It seems the weekly care conferences are destined to be scare conferences for us and without the perspective we have on the value of this experience and the reality that it is wholly in the Lord's hands, I think these would just simply be overwhelming.  Every week we are provided all the information available regarding Jordan's condition, which generally includes the many reasons he may not live.  The first week the virus was going to take him, then the issue was organ failure, then his lung gas, and this week it is yeast, mold, and graft vs host disease.  It is difficult to internalize the fourth or fifth time we are told Jordan will not likely survive or to know how to respond to the forlorn expression that seems firmly planted on the faces of all the physicians involved.

Once again, however, I appreciate the doctors being honest with us.  This time around a member of the Advanced Care Team at the hospital, who has been with us for several weeks, did ask the lead immunologist what positive signs we can watch for in addition to the many negative ones shared.  The doctor's response was that "if Jordan is still clinically stable in 2 weeks, that is a good sign."  I suppose that is all we get at this stage.

At the time of the conference, the doctors were even more concerned about Jordan than the prior day because the biopsy of Jordan's stomach yesterday revealed Graft vs Host Disease.  We were hoping to avoid at least ONE disease or reaction option for Jordan but apparently he is going for a perfect strike.  The disease is early stage enough that rather than giving Jordan high doses of steroids, which may again suppress the T-cells in him, doctors plan to use a topical ointment directly into his stomach and give steroids 6-7 days from now.  They hope by then the T-cells will be even more established and able to take the beating the steroids will provide.

Jordan in the meantime doesn't believe any of this and is as awake and playful as ever.  He seems content to let the doctors do all the worry while he connects even more with his family and discovers the world around him.  I think he has the right idea.

Yeast and Mold

After nearly a week of "stably unstable" status, Jordan has decided to try something new.  He has already tried most medical complications, from a tracheotomy, to a g-tube, to an immunodeficiency, to several viral infections, to major organ failure, to a bacterial infection, to a yeast infection in his tubing.  With little left to choose from, it seems he may be taking on mold--yes, mold.

A few days ago, doctors informed us that Jordan had a yeast infection that appeared to have seeded in one of his peripheral lines and may have spread to his bloodstream.  Like any infection, and particularly any infection for a child with an immunodeficiency, this is not good news.  What makes it even more complicated with Jordan is the fact that the normal treatment for bloodstream yeast is to remove all plastic lines from the patient's body for a few days and give the child a liver-damaging medication.  Neither of these approaches are safe for Jordan so instead the doctors gave him the strongest medication that is safe for him and removed only his femoral PIC line.  Judging by the deepening lines in their faces, this limited treatment appears to have added stress to the lives of his entire medical team.  

Yesterday, as doctors continued to discuss the potential damage a bloodstream yeast infection could cause, one of the physicians indicated Jordan may also have mold in the bottom of his lungs.  Aspergillosis is a condition where tangled fungus fibers (mold) develop in the lungs and cause shortness of breath, wheezing, and much more.  In addition, it can spread to other areas of the body, such as the stomach and cause blood in the stool, which Jordan has also recently been experiencing.

As a result of the blood in his stool, Jordan has also been signed up for an all-expenses paid tube-down-his-throat adventure to biopsy his stomach.  If there is mold in his stomach or his lungs, doctors will change the way they are treating him for his bacterial and yeast infections.

With all the strength Jordan has shown in surviving his sicknesses, I hope his body doesn't simply get tired of all the tests, tubes, pokes, and prods as the doctors try to figure out the cause of his ongoing symptoms.  I hope his tubes diminish and he can stabilize himself out of the ICU.  I look forward to the day I can see him sleeping free from all lines and tubes and wires and machines and have him wake me up in the morning with a good, strong cry.  

Sound

For the first time in 8 months I heard Jordan "speak".  Not a small, weak sound I have heard before when his tubing is being changed or air is being forced through a loose tube, but actual full sound from his vocal chords.  At first, I wasn't sure what it was with the respiratory therapist working away, but then I realized I was hearing a baby noise that was almost a cry and I stood up from my chair and walked to the side of Jordan's hospital crib to get a closer look.

The therapist didn't seem to notice anything remarkable as she continued changing tubes and checking settings.  When I couldn't take it any more I commented, "this is the first time I have heard him make a real sound...EVER."  The therapist looked surprised and said I should be there when she changes his tubes.  Apparently, she thinks this happens all the time.

Not wanting to jump to conclusions, I asked, "What would allow him to make such clear sounds suddenly?" She responded that when she deflates the bubble that helps prevent air leaks around his tracheostomy tube, he is able to get air around his vocal chords, which are now more developed.  Wow.

Thinking back through my first four children, I recognize once again the perspective change that occurs with contrast.  Noises such as crying at night, which used to cause me to tense up, I now long for.  Distractions from work and responsibility such as reading a book or bouncing a ball back and forth with a child, are now dreams of a distant (and I hope not too distant) future.   Even frustrations such as teasing and fighting have become hopes for my sick child.

What I recognize is that the moments of silence make the sound richer--but not because it IS richer, only because I finally HEAR it.  For the first time in my life I have heard not just Jordan's sound but the cry of a child for what it is--JOY.  And I can't help but recognize that this same joy exists in all aspects of my children --from playing and laughing, to teasing and fighting, to learning and loving, to growing and living. It is all the sound of joy.  I am grateful for the opportunity to open my ears to it.

Heidi Post With Pictures 6-23

Post on Facebook by Heidi 6-23:

Jordan pulled off his heart monitor tab and was playing with it as it stuck to his finger and sucked on it enough they had to be replaced. Too cute!

So, Jordan looks great on the outside but we were informed today that he has a pretty bad yeast infection in his blood stream. This poor kid is experiencing it all.

Truly as his mom my heart breaks each time when one more thing plagues his little body. He however acts and looks like nothing is new. His body and spirit fight on.

We still have the continued peace in our hearts and it is that peace that allows us as parents to take it all in stride and look forward.

The stress on the doctors face always sets my heart in panic till the peace soon replaces it. In my heart I can't help but wonder how people are able to deal with tough trials without a knowledge of a loving Heavenly Father and the strength that comes from knowing you are not in this alone.

A Steady Climb

Jordan has both his hands in front of his face; he stares at them for a moment as if deciding what they might be used for and then lowers the right hand to his mouth.  Moments later he bats away the nurses hand as she tries to put drops in his eyes.

Like yesterday, Jordan is awake and aware--perhaps too much so today as several of his medications keep him from sleeping.  Instead he watches and plays and pulls at every chord he can find, from his heart monitors to the IV in his head.  At one point last week the nurses gave up and pulled his head IV out saying, "either we do it or he will."  His downward turn required them to put the IV back in, however, and Jordan seems to like the challenge.  

With no ability to hear or speak, Jordan continues to communicate with his eyes and today his eyes are thoughtful and even playful.  As I stand next to him, he moves his gaze between me and the fish, turtle, star, and blue octopus that are circling above him.  It is good to see him doing so well.

Breathing in the moment, I can't help but wonder how long this will last and hoping this is less of a "peak" than the beginning to a steady climb.  Jordan still has a waiting game with his body and still needs to get his kidneys and lungs cooperating.  Next week the doctors will try Jordan on hemodialysis a few hours a day to see if his body can handle it.  From how he looks today, I think it can.  

Improving Again

Here we are again with doctors shaking their heads.  One of the resident physicians said she just can't understand how Jordan keeps pulling through.  Another one told Heidi she has only seen one other child recover from what Jordan has been through.

Jordan is back to moving both his hands and playing with his toys.  He is back to interacting with Heidi and with the nurses.  He is back to looking like Jordan.

Each time the physicians seem to believe Jordan is on an unstoppable downward spiral, he recovers.  Clearly there is a purpose and a plan for him that is beyond what the doctor's understand.  We continue to be grateful to be a part of the journey.

What I see

I am winding.  I never know whether I am winding up or winding down but I seem to always be winding.  And it is exhausting.

Today, like yesterday, has been rough.  Jordan is back in Heidi's arms today and his health remains  poor but is holding.  The doctors are concerned that making any change, even a small one, may have a major negative impact on Jordan and so they have chosen to let him be for a few days.  Once again, the Attending Physician sat with Heidi to tell her how gravely ill Jordan is.

I understand and appreciate how much the doctors want us to have clarity on Jordan's condition.  They have an impossible job and If I were in their shoes, I would probably feel the same way.  But sometimes--from my shoes--I would like to be left alone with what I feel; with faith that I can navigate between what I feel and what I see.  Perhaps steering parents toward what can be seen feels like it lessens the burden of the situation--and maybe for some it does.  But for me what is real is real and no amount of information will change that.  I want the information, but am tired of being asked to look down when I should be looking up.

What I see is that Jordan's virus count is going down and his engraftment is taking hold--two miracles.

What I see is a very sick child with signs that his lungs and other organs are getting worse.

What I see is a wonderful mother who sustains her son with faith and love and who holds a beside vigil every waking (and some sleeping) moment she can.

What I see is a very special child who is fighting for life.

What I see is relatives and friends who sacrifice to serve my family in so many ways and who are sincerely grateful for the chance.

What I see is family members who because of Jordan, stop to think about others in ways they would not have done even several months ago.

What I see is a Father, who will do anything to bring my heart back to Him, even if it needs to be carried by an 8 month old boy to get there.

What I SEE is God--and that is enough.  The rest is simply details.

Stably Unstable

"Stably Unstable."  That's how the nurse describes Jordan to Heidi today as Jordan continues to lie with his eyes closed.  A few times each hour his arm moves to rub at his nose--but his eyes stay closed.  I am happy to see some movement.

Throughout the day, Jordan's doctors come in and out of the room, once again trying everything earlier doctors have tried and occasionally something new.  Dr. Standich, the Attending Physician yesterday and today--who is also the Bishop at the church we have been attending the past few weeks--comes in every few hours to tell us that he is concerned and answer any questions we have.  After months of talking with doctors, today I am running out of questions.

Back and forth from the hospital to the Ronald McDonald House, down the street to run an errand, off to a friend's house to pick up the kids, back again for dinner, back to the hospital, home again.  Somehow I manage a few hours of work on my laptop in the gaps.  

Late afternoon my older sister shows up to spend a few hours with Jordan.  By now, I am tired and frustrated Jordan has taken another turn for the worse.  "His virus count is down to 3 million" I think to myself, "and his lungs should be improving."  Even so, I am strangely calm--either because I feel confident Jordan will make it through this period or because my stress hormones have run out of juice.  Probably a little of both.

Before his shift ends, Dr. Standich shows us the CT images of Jordan's lungs. They have much more inflammation than the image he compares this to from several weeks ago.  Dr. Standich takes the time to once again tell us the details of the air pocket that is ominously large and sitting precariously between Jordan's lungs and his heart.  I see the air pocket visually for the first time, and the concern on the Dr's face, but nothing really sinks in.  Time for sleep, and more prayer.  

One Step Forward, Two Steps Back

The phone rings about 4pm today and Heidi asks if I am "available to come to the hospital".  That is never a good sign.  By now I know the drill.  I rush to the hospital and arrive to see the familiar site of Jordan's room filled with doctors and nurses and a concerned look on the face of the attending physician.  "Jordan's blood gas levels are climbing again" he says, "and he has a pocket of air near his heart.  His blood pressure is dropping."  

Across the room I see Heidi standing at the head of Jordan's crib.  She has a resolute look in her eye that is a mixture of determination, frustration, and fear, and a tear running down her face.  "He'll be okay" I reassure her--and I believe it, because Jordan has more to do here.

A few hours earlier, the new attending on for today had requested a CT scan the next time Jordan's CRT (for dialysis) shut down or needed to be changed.  He wanted to get a better look at Jordan's lungs to see why so much air was being trapped.  It could have been days before the CRT filter needed to be changed but for some reason the CT scan needed to happen today because the CRT shut down on its own 20 minutes later.  

According to the radiologist, the CT scan showed an air pocket called a pneumothorax, which is putting pressure on Jordan's lungs and maybe on his heart.  The first radiologist felt this air needed to be released; the second radiologist wasn't so sure.  

As the day and night team form a circle outside Jordan's door to form a plan for the evening, I hear the second radiologist say that, "I can get a needle in there to clear the air and it will be at a most a millimeter from his aeorta...the chance that we puncture the artery is a significant risk."  Everyone in the circle looks at one another as if waiting for a new idea...something to try next.  

In the room, Jordan lie sedated once again with his eyes closed.  Without the ability to clear medication through his kidney and with the CRT machine still disconnected, he sleeps soundly.  

Once again, nurses bring in scores of medications such as epinephrine to boost Jordan's heart function and inhalants to relax his lungs.  Small machines to time-release the medications are once again set up like an electronic tree.  

While we watch and listen for updates, a nurse breaks away from the medical discussion to inform us that Jordan's chimera test shows CD3 T-cells; and that 53% of these are Jordan's.  She tells us the immunologist "would have been happy to see 10% and is very surprised to see 53%".  This is one more confirmation the engraftment is working.  

Jordan is in the ICU for a reason, but we believe he wants to be here and that his heart and lungs can hang on while his immune system develops.  "One more day", I whisper to him as I take his hand; "You can make it through one more day."  

Baby Steps

Jordan is on his back in a hospital bed where he has been laying now for more than 3 weeks.  When I enter the room his eyes move toward me but his head doesn't move--he never moves it beyond a few centimeters in either direction when he shakes it from side to side.  He fixes his gaze as his hands reach for a piece of string hanging down beside his face for him to play with.  Most toys he holds for a few minutes and throws away.  The string, however, is a different story as Jordan feels around for it, grips it, and works through several attempts to push it into his mouth.  At last he is successful and begins plunging as much of the string as possible into his mouth like it is a conqueror's feast.  He would certainly swallow it if it wasn't tied to the crib.  After a while the string falls out and he begins his quest to devour the string once again.  

With so much of his body still ravaged by disease, Jordan moves only his arms and legs.  At 8 months he doesn't have the strength to sit up, turn over, or even lift his head.  He simply lays and waits for interaction from his family and his nurses and rewards those who spend the time with a fixed gaze, an outreached hand, and on occasion, a unique smile.  

For all Jordan can't do physically, however, he makes up for in sure will.  A leak around his stoma allows me to hear his struggled breathing.  Deep breath in, long breath out; deep breath in, long breath out.  He is once again unable to clear his CO2 properly and so his body exhales forcefully and his blood gas levels continue to jump up and down throughout the day.  Jordan doesn't seem to notice.  

I sit and hold Jordan for another few hours while Heidi and the kids watch a cartoon in the waiting room.  Unless the child is dying, kids under 10 aren't allowed in the hospital rooms, so Heidi and I take turns holding and caring for Jordan throughout the day and spending time with our other kids.  I am grateful to have more focused time with each of them.  

Around 8pm we see what we think is pee mixed with blood filling his diaper.  After weeks of no progress with his kidneys, even pee mixed with blood is a good sign.  The Attending Physician for the night watch confirms it is pee and that provides our hope for the day.  "Baby steps" we remind ourselves, "baby steps". 

A House of Love

Yesterday I passed a woman in the hall.  She was middle-aged and dressed like a working professional; on her face she had a forlorn expression that let me know she was lost in her thoughts.  I smiled as I passed and asked how she was doing.  She looked up and told me that she was "okay" and after a brief discussion, explained that her 14-year-old son has leukemia and is not doing well.

Last night at dinner, a family I have seen many times sat near us and introduced us to their 10-month-old daughter, who has a malignant tumor that needs radiation because it has grown into her spine near the neck.  This little blond girl with all the energy of a 10 month old is just beginning to lose her hair after her second radiation session; her family is in for quite a journey.

Today at breakfast, Heidi made small talk with a woman nearby and learned this woman's 16-year-old son is here for leukemia and will be in treatment for several months.  So far, it is "moving along well."

Every day, new individuals and families come and go--most leave after a successful treatment for a son or a daughter to treasure the years they have found; some leave to bury a child and mourn the years they have lost.  Regardless the circumstance, however, there is a current of compassion that seems to flow between everyone--from the patients to the families to the volunteers.  Rather than isolating individuals in their crisis, the trials seem to bridge all traditional divides of language, culture, experience, socioeconomic status, race, religion, and connect everyone as human beings.  There is a palpable sense here that inside the clam shell of suffering is a pearl of hope and peace that can be accessed through giving and serving in selflessness and love.

Based on the challenges the families here face, it is a true miracle to watch as an uncle whose niece is dying from cancer spends hours cleaning the kitchen and preparing food for families he does not know; or to see a young man who is wheelchair bound anxiously trying to find ways to help others carry boxes they can more reasonably transport themselves.  I am intimately experiencing what I have taught for many years: that love is the deepest foundation of the human soul and that even when we are in a challenging circumstance we can't change for ourselves, we can always find joy in serving, helping and loving others.

Care Conference

The experience of being in an ICU unit has many unique qualities.  One of these is that the less interested people are in you, the better.  Being popular and interesting here is not a good thing.

As we sat in our second formal care conference today, we certainly felt less popular and interesting than last week.  Jordan continues to be unique, which means his reaction to the infusion remains an unprecedented mystery, but our team of concerned physicians shrunk to nearly half the size.  We hope that trend continues.

At this point, Jordan remains stable and is clinically improving.  The care team's update confirmed what we have been hearing daily: that renal function shows no sign of improvement; liver function continues to improve and the liver is still producing clotting proteins; the acute hemolysis appears to have abated; and Jordan will likely have an MRI some time next week.  We asked to have the MRI team look for ear canal structure at the same time they look for bleeding on the brain to save Jordan additional tests in the future and were told the team will try to make this work.

While the doctors still don't have any idea why Jordan's body reacted so significantly to the infusion, the current theory remains that Aaron's cells were so well primed to attack Adenovirus that they released a huge level of hormones that caused Jordan's body to shut down.  Doctors also have no additional answers as to why Jordan's kidneys stopped working.  One idea is that the Cyclosporine Jordan is receiving to assist with engraftment can impact renal function.  To rule Cyclosporine out as the cause of renal failure, doctors want to do a bedside kidney biopsy if attempts at "kickstarting" the kidneys (by allowing Jordan to retain more fluid) are not successful next week.

As for engraftment, early tests showed only the CD8 T-Cells as "new" in Jordan's body.  Other necessary signs of engraftment may be more apparent through chimerism studies (named for the Greek Chimera which is a composite of a lion, a goat, and a serpent), the first of which is due back Monday.  This study uses STR analysis (the same process used for a paternity test) to determine whether Jordan's body is all Jordan or is a composite of Jordan and Aaron as we believe.  Apparently the study at 28 days will be a much more conclusive indicator of engraftment success.

We are indeed grateful for our wonderful care team here at Seattle Children's.

After the meeting, I was blessed to spend several hours cradling Jordan in my arms.  Jordan had been only able to lay on a pillow on my lap but today he lay in my left arm with his head against my chest, watching me intently with his yellow and red tinted eyes.  Every few minutes, he reached up with his left arm to explore my face and remind me that he is learning from me as I am learning from him.  After a while, we both drifted off to a restful nap--confident that neither of us would let the other go.  What a gift it is to be a Father.

Reality Check

I am sitting in a small library in the Ronald McDonald house today, trying to get some work done.  After days of beautiful and rare Seattle sun, it is raining heavily outside.  Several blocks away, Heidi is at the hospital waiting for Jordan to return from the surgery he needed to move his Mahurker line for dialysis.  We hoped the doctors could wait a few days but Jordan's blood pressure has been fluctuating too much to take that risk.

Yesterday we learned Jordan's body appears to have some baby T-cells, which indicate the engraftment is working.  Today we are told the immunologist may have been overconfident in the result, although for us that does not diminish the miracle (nor does it remove superhero status from Aaron).  It is clear at least that Aaron's T-cells are working since Jordan's body, and particularly his lungs, appear to be improving.  From the standpoint of copy count, the Adenovirus is down to 13 million, although we are told the trend is more important than the actual copy count; the metapneumovirus is not gone and the copy count for this virus has been found to be increasing, although no one seems particularly concerned about it at this point.

With the vicissitudes of life continuing to check our faith and expand our awareness, we are trying to balance all the news with the reality of a continued uphill climb.  Waking up in a hotel-like room with children scattered across the bed and floor, having breakfast in a shared space with other families dealing with their own significant trials, we are clear that this climb is about more than just getting Jordan better.  We have a lot to learn and certainly some of that has to do with the service we can provide to others, even while we are here.  Our challenge is different from those of each of the families around us; but the value of each of the individuals and families here is certainly the same.

Jordan's T-Cells

"I am a superhero!!!!" Aaron cries out with excitement as he reacts to news that Jordan's body may be creating T-cells (Jordan now has CD8 T-cells needed to fight the virus).  "Yes Aaron", I tell him, "you saved Jordan's life."  Then I thank my other children for being willing to serve Jordan in the same way.  We are surrounded by superheroes.

With Jordan receiving only 1/3 of the intended T-cells and many of these being killed by the heavy doses of steroids needed to alleviate the systemic response to his initial infusion, we were told that it was unlikely the T-cells would engraft at all.  If they did, the immunology and transplant team believed it would be weeks to months before we could possibly see them working.

Around 7pm tonight, as Jordan's body was going through a period of low blood pressure and a high heart rate resulting from a slight dehydration, the transplant specialist on call told one of our nurses, "it is a miracle, Jordan's body is producing T-cells."

Another day, another miracle.  We are overwhelmed by these many blessings for our sweet little boy.

Another Surgery

With another good day for Jordan, it certainly feels the crisis has ended. Heidi and I have turned our attention to the daily process of sitting with Jordan and watching him improve.  Our prayers have moved from saving his life to helping him have a quality of life that we hope for him.  As parents we want Him to be free from all sickness, suffering, trial, pain.  As children of a Father in Heaven, we hope to leave those challenges that will propel us forward as a family in this life and beyond.

For us and for Jordan, the next opportunity for development may be another surgery.  Jordan's current dialysis line is too close to his tracheostomy and this carries significant risk for infection as his trache site constantly oozes fluids.  The surgeons are discussing moving the line to a different location further down the artery so the line will exit out his chest, making it not only safer but easier to manage.

Before performing this surgery, doctors are discussing allowing Jordan's body to be without dialysis for a few days.  This would give Jordan's kidneys another chance to function before once again introducing Jordan's body to the unknown risks of surgery and anesthesia.  Jordan has been weaned off nearly every medication he has with the exception of a mild pain-killer and getting him off dialysis would move him one step closer to full recovery. One step closer to coming home.

In the midst of a crisis, I often push or even slog through the fog because I have nowhere else to go.  I move forward because I hope by doing so the fog will clear.  Sometimes, the fog does dissipate for a time and I feel the warm sun on my face; I get a view of where I am and what is in front of me.  Other times I receive peace in my heart to strengthen me as the fog thickens.

Over the last weeks and months I have experienced both the clearing and the thickening of this fog at different times.  I have seen proven in the crisis, as I believed each day before, that not knowing an outcome is a gift that allows growth and that what is unknown to me is seen, known, and prepared for by God.  When I lose strength, He faithfully carries me as on eagles wings and I find light where I feared there was despair.

I also know that this light is not tied to outcome, but to outreach and openness. God does not get brighter when I need Him more, He simply shines through more brightly because I choose to see Him more.  I am grateful he is there for our family.

Questions

Going into another day there are many questions left to be answered.  Why did Jordan's body react so significantly to the infusion?  Was it Jordan's body reacting or antibodies from some of the other blood products Jordan received?  If he needs more T-cells from Aron's frozen "product", which in its frozen state can remain viable for up to a year, how can we protect against the risk of another reaction?  How long do we wait to see if the T-cells that did make it into Jordan's body take hold before trying other potentially risky measures?

With a virus count that appears to be essentially the same as Monday's, we are hoping the T-cells are at work.  We received confirmation Friday that Aaron did in fact have the Adenovirus and so we have even more reason to believe some mature, Adenovirus-trained cells made it into Jordan's body.  In the best case, the virus copy count will begin to fall while the engraftment takes hold, and then the newer T-cells will get trained at the Thymus and go out to finish the job.  It is unlikely there are enough mature Adenovirus trained T-cells to actually eradicate the virus on their own.

We are also left with questions about Jordan's future.  His movement and personality get stronger every day, but we are still not able to get the MRI necessary to see if Jordan may have suffered a stroke or had a seizure as a result of this event.  Spontaneous body movements since the infusion indicate one or the other of these may have occurred.  And we continue to question how long Jordan will be on the dialysis machine.  While Jordan can live on a dialysis machine for many years, the idea of him not being able to manage his own fluids, and the potential for needing another transplant down the road is concerning.  The doctors tried to see if Jordan's kidneys could handle fluid on Thursday without any luck; they will try again in a week or so.

Today, however, Jordan is strong enough to finally play the game of smacking his lips to mimic others.  He remains patient and resilient and a great joy to be around.  His ability to hang on and push forward is a testament to many things, including the strength of the human body and soul, the power of faith and prayer, and the reality that he has more to do while he is here.

Mother's Lap

It's been one week since Jordan received his infusion of T-cells; one week since the only thing that can save him nearly took his life.  One week that lasted a very, very long time.

Over the past day and a half Jordan has continued to improve--moving his free arm more regularly, following faces more quickly and responsively with his eyes.  His skin is still yellow from the shock to his liver (resulting in an increased concentration of bilirubin), and his right eye retains evidence of the blood vessels that exploded there last week, but otherwise he is back to looking like the Jordan we know.

With Jordan's ongoing stability, Heidi was able to hold him on her lap for the first time since the infusion.  She  stared at him for quite a while, seemingly afraid to break his gaze; and every once in a while she smacked her lips to see if Jordan would imitate her.  His body is not yet strong enough for that game but he did the best he could and she could see him trying.  That was enough for today.

Last night, Heidi and I were able to both leave the hospital for a few hours together and take Aaron to the Seattle zoo.  We desperately needed the time away and the chance to walk in the warm summer air was revitalizing.

Today I drove down to Portland to be with my other children who just finished their last week of school.  Tomorrow we will gather more of our worldly possessions and get ready to continue our summer adventure in Seattle.

The road ahead is a long one but one we are grateful to have the opportunity to travel it.  While Jordan's Adenovirus remains present with a very high copy count, his secondary virus appears to have abated or even  vanished altogether.  We are hoping for confirmation that this secondary virus was destroyed and that his T-cells are growing within the next few weeks.

In the meantime, we will continue to take every day as it comes.

Emerging

I think with every significant event in life we have an opportunity to peel back at least one layer of our celestial cocoons; to feel and see and act differently--to more richly connect with ourselves, with others, and with God.  Everything seems a little different after these events, because everything is.

Sitting by Jordan's bedside this morning, I find myself nearly overwhelmed by the miraculous that is often hidden in the routine.  From waking up with my own healthy body, to the perfectness of the atmosphere and earth that makes life possible, to the gentle kindness of others.  I don't pretend to know what will happen today but I know I will be more grateful for it.

For the first time in days, I am finally able to breath out.  The 18 doctors, nurses, physicians assistants, and patient care team members that meet for rounds outside Jordan's room each morning explained that Jordan's numbers are all improving to pre-crash levels.  His breathing is stable, his heart-rate is high but reasonable, his Ph balance is nearly where it should be.  Even more incredibly, the enzyme numbers that indicate his liver function are below anything seen for the last month.  Jordan is far from being healed, but today his body is winning.

Over the past 24 hours, one doctor after another walks into the room to look at Jordan, shakes his or her head, and says something to the effect of,  "There is more at work than just Jordan here", or "We don't know how he could have pulled through."  Even the transplant doctors smile as they watch Jordan lift his right arm to his forehead and back down again.  Despite all the care to protect against contagion here, hope is spreading.

Not knowing quite what the Lord had in mind for Jordan has made the past days and months since his birth especially hard.  We know Jordan is supposed to be here as a part of our family, and we certainly have spiritual moments when we feel strongly that he will be here for some time; but I have learned never to assume miracles have only one form and certainly never to try to dictate what that form should be.  I have learned that faith has power not when I become good enough that the Lord will listen to me but when I am humble enough that I will listen to Him.

I am trying to listen so I know what to pray for.  Like Jordan, I am trying to hear.

Forward

Jordan's eyes are open.  He is staring straight forward.  He doesn't blink.  Since Friday Jordan hasn't closed his eyes.  Yesterday he began to move them again, to slowly follow faces.  His right arm moves a little on its own, and we know Jordan is fighting to come back from wherever he has been.  I like to believe he was in Heaven, resting--waiting for his body to get strong enough once again.

We stare into his eyes and find an emptiness brought on by a very sick body and narcotics to ease the pain.  His breath is restful.  There is no expression on his face.

Then suddenly he returns as though his soul literally entered his body once again and we see him.  His body doesn't move. His face doesn't change.  But we know Jordan is there once again and aware of us.  He speaks volumes in those seconds to us as we do to him and our hope is strengthened.

With such an uphill climb, Jordan's body is holding on by sheer miracle.  We believe in healing and so we wait, and watch...cautiously.  We know Jordan is still a very sick child.  His veins are all plugged with lines to give him fluid, remove fluid, provide medications, check vital signs, help him breath. He is surrounded still by machines.  Many of his vital organs are not functioning properly or at all.  Yet little by little he shows signs of improving--and only those who believe in hope and faith and love and miracles know why.

Underneath it all, the Adenovirus continues its death march like a vindictive war captain intent on leaving nothing standing in its trail.  And silently we wait to see what Aaron's cells can do against that fight, to see if through it all there is still a way for us to win.  We hope for answers but for now hope is the answer; and we march on.  

The Morning Light

The sun came up again this morning.  It brought with it warmth and light and a renewed sense of hope.  Yesterday we finished preparing to let go; today, we will continue to hold on until either we or the Lord take him home.  Somehow now we can handle either better, through we pray for as much time as the Lord will give us with our sweet boy.

After unexpectedly pulling through the most heart-wrenching night of our lives so far, Jordan is bringing his own light to the morning.  His liver enzymes are turning a corner and appear to be improving, his neurological functions are improving, and he is showing signs that he is not ready to stop fighting.  Yesterday his 4-year-old brother came to visit Jordan and turned to his Mom to ask, "When will the fighters in my body make Jordan better?".  Certainly they are trying.

While we struggle with Jordan to keep breathing and moving forward--to fight the battles Jordan can't fight--we again are grateful for the many miracles we have already received; for the tender mercies of the Lord.  Here are just a few (keep in mind we have never lived in Seattle and never planned on it and it is hundreds of miles from our home):

6 years ago, one of Heidi's prior roommates moved blocks away from Seattle Children's Hospital.  Heidi arrived to the area with someone she knows and cares about there to support her.

A year ago, Jordan's aunt was accepted for an internship near Seattle.  She arrived for that internship one week after we were transferred to Seattle Children's Hospital.

6 months ago, Jordan's uncle decided to bring his family to Seattle for a tradeshow and to visit their aunt. They arrived with their children last Wednesday and stayed through Sunday--the exact period we needed family support most.  

Three weeks ago, the first physician to introduce himself happened to be a Bishop in our church and provided support and encouragement while connecting us with a support network of family and church members here.

Two weeks ago, our family felt we should attend church at a building 20 minutes away in a congregation called the Greenwood ward. As soon as we sat down, I was greeted by name by a familiar face--someone I served a mission with in Baltimore 15 years ago.

Everywhere we turn there are familiar faces put in place to provide comfort to us in our time of need.  These are the angels among us.  I am grateful not only to have the angels but that the Lord uses each of us to be a light to others in need, even when we least expect it.  .

Then Yesterday we were handed the following email printed by that same Bishop-physician we met, and sent to him by a member of his congregation:

"My sister is in the Greenwood ward. Two weeks ago a family in the ward lost their 9 month old baby boy in a household accident. The entire ward was devastated.  An eight year old boy visiting the ward from Portland got up to say that his family was in Seattle because his 7 month old brother is dying at Seattle Children's.  His testimony was sweet and articulate. Then his grandmother got up.  She also bore a testimony about the Plan of Salvation, feeling the presence of family members on the other side of the veil, and the sure knowledge that they have that the family will be together forever. The ward was comforted by their words so much that my sister has been wondering if these people were...not angels sent from heaven to minister to the ward. She is wondering why they chose to drive clear across town...to attend a meeting at such an unusual time. Even the parents of the little baby who died were comforted by this family who, experiencing their own loss, drove to an unlikely location to share their testimonies. It was a miracle."

Like Paul preached to the saints at Corinth, we are all used by the Lord to strengthen one another; to bind up the brokenhearted and to be a small but necessary part of the body of Christ.  I am grateful to live in the light of so many wonderful people who love and care for my family, and to know that we are never alone.

A Beautiful Day

Today was a beautiful day.  It was a day of miracles--not for little Jordan but because of him.  Today four little children got out of bed and were more thoughtful to one another.  Today my wife and I grasped one another's hands and felt a deeper sense of love and gratitude for one another than we have ever felt before.  Today family and friends connected from across the globe through the internet to offer love and support.  Today close friends and perfect strangers sent thank you notes for the light Jordan's story has been in their lives.  Today was a beautiful day.

At the start of his life almost 8 months ago, we knew little Jordan Paul Janeway would make a difference in our life.  What we didn't know is how significant that difference would be and how widely it would spread.  We knew it would be a difficult road--but we had no idea how meaningful that road would be.

Throughout the day, we were peppered with news of Jordan's condition.  A functioning left ventricle in his heart meant he no longer needed a heart medication; an improved chest x-ray meant his lungs were clearing up.  A visit from a specialty respiratory team and later by the pulmonologist suggested there was nothing more to do for his lungs.  A cranial ultrasound showed no major fluid leak on the brain.  An increased potassium count introduced risk to his heart.  A falling Ph level suggested his lungs were getting worse.  Hemolyzed blood suggested his cells may be dying.

With so much information coming at us, we called a care conference and sat in a room with representatives from all of Jordan's care teams: immunology, transplant, ICU, nursing, social work, advanced care, nephrology (kidney doctor).  One at at time these doctors outlined that Jordan had some signs of getting better and many indicators that his body is still very, very sick.  They offered hope of improvement if Jordan's virus was getting under control.

An hour later, a smaller group of doctors called another conference to discuss the result of the virus count testing.  They told us Jordan's virus count is up from 19 million to 28 million particles.  They told us we need to prepare.

Yesterday as I took time to connect with Jordan and be ready to let him go, I thought I had stretched my heart just as far as it could go.  Today, I watched his mother tell her baby she loved him and would miss him and I thought my heart would break.  Then once again I felt peace fill the gap between what I hope for and what is; the balm of Gilead.  And I held her hand as we sent the nurses out of the room and cried.

Today I sat with my wife and my 8 month old son and thanked God for our time together so far and for the joy it has brought to our lives.  Today was a beautiful day.

Reflections

It is oddly quite here tonight.  The lights in the hospital room are off and the normal hustle of nurses and doctors is strangely and even uncomfortably absent.   Even Jordan’s primary nurse is sitting outside the room rather than running the usual nighttime meetings at his bedside.  The doctors that were visiting every few hours have not come by.  The supervising physician is nowhere to be seen.  And all of this points to greater stability.  

  

After the past few days, it is hard to know what stability means in the ICU.  With each blood infusion from the dialysis machine Jordan receives steroids that continue to suppress his immune system and even kill some of the T-cells he so desperately needs.  He is on scores of medications and machines to keep him functioning properly.  Hopefully this means his body is working to fight the viruses so it can begin to function on its own once again.  Hopefully we are turning that corner.    

As a parent, it is difficult to know when it is the right time to hold on and when it is the right time to let go.  It is difficult to know when to react and when to sit still; when to stand up and fight for my children and when to kneel down and pray.  It is difficult to know when experiences in their lives are for them, or for me, or for everyone. 

What I do know is that whatever the experience and whatever the outcome, I can always become better from it and I can always give my children love.  I can always take time to literally breathe in the moments I have with them and to make as many of these moments as possible.  That is what today was all about with Jordan.  In his critical condition, Heidi and I stood constantly by his bedside and traded off holding his one free hand (the other is covered by a brace to support another arterial line).  Not knowing what the day had in store and where it would end, I took time to tell him how much I love him and how grateful I am for the time he has spent in our family.  I closed my eyes and breathed deeply a few times to feel the peace and love that exists between a father and his son.  I leaned over to put my face on his and my hand on his head to connect with him as closely as I could.  I wished I could hold him in my arms.  As I did so, I was filled with the feeling that the sadness and heartache that surrounds me is one of the gifts love brings—a connection that is so deep and strong that it crosses the veil of death and extends into the eternities. 

I have also learned that significant experiences are like fountains of living water.  They don’t have one single meaning that needs to be identified to make them worth having; instead they provide, like scripture, a foundation on which new meaning can be built day after day after day to light the path ahead.  Knowing this allows me to be grateful for what is--instead of only being grateful when what is, is what I want it to be.     

Dialysis

Dialysis is the process of removing excess fluid from the body, generally as the result of renal failure.  It replaces the kidney function while the body tries to heal itself or in some cases while an individual waits for a kidney transplant.   As of 2009, more than 350,000 people were on dialysis in the US, which is about 1 in every 1 million people.  This of course, means Jordan is 1 in a million—which we already knew. 

After 3 hours in the operating room last night, Jordan returned just after midnight with an 8 french (which describes the size of the tube) Mahurkar line for hemodialysis in his inter-jugular (the main return vessel from the brain).  This allows blood to flow into a dialyzer where it is exposed to partially permeable membranes and removes water and waste before the blood is returned back to the body.  Essentially, the machine pulls his pee from his blood, which is another modern miracle. 

To place the Mahurkar line into a major area of arterial blood flow, the surgeons had to pull out the double lumen Hickman line they put into his inter-jugular just a few days ago.  The Hickman line had provided access to a major blood flow area in the body to give Jordan multiple fluids and/or medications at the same time (“double lumen” means there are two inputs into one line), so they placed a double lumen PICC (peripherally inserted central catheter) line in his femoral vein near his groin instead. 

The net result is one more machine supporting him and one more line going into Jordan’s fragile body.  

As difficult as it is to watch Jordan go into another surgery and come back supported by another machine, I also know he is supported by three powerful miracle-producing agents called faith, sacrifice,and love.  I am humbled by the outreach and prayers of so many wonderful people who fasted and prayed for our son this weekend and who even made ribbons to put on their shirts as they ran in a 5k Saturday.  We have seen and felt the result of that faith and continue now to pray that Jordan's kidneys will produce enough clotting agents to keep his brain from bleeding and that his stomach won't continue to expand to the point of requiring surgery.  The attending ICU physician indicated that a pressure-releasing stomach surgery for Jordan would be life-ending and would only be considered if everything else failed.  Some physicians feel he doesn’t have enough left in him to make it, but here we are again at the end of another day and the Lord remains firmly in the driver’s seat. 

Perhaps the greatest challenge at this point is knowing what to feel and when.  In the morning we were told Jordan’s oxygenation was falling and the medical team was again running out of options to support him.  Heidi and I again prepared to say goodbye to our son.  By the afternoon the oxygenation had stabilized, and more than 100cc’s of fluid had been filtered from his blood, which means Jordan is beginning to “deflate” a bit.  His other stats became more stable as well. 

To say this is an emotional roller-coaster is like comparing sky-diving to jumping jacks; the truth is there is no way to describe this experience except to say that it is exhausting, humbling, and deeply and permanently life changing.  

One Day At A Time

Day 1.  At this stage, every day is day 1--introducing new triumphs and new trials.  For baby Jordan it is the first day after his infusion of T-cells; the first day his body may be slowing down in order to heal.  He still has a long way to go, but he made it through day one and today that is all that matters.

After a long night in which the doctors and nurses continued to give Jordan fluids and other medications and the respiratory team continued adjusting Jordan's ventilator settings to get him to a place where his lungs could expel CO2 more effectively, we started the day with a Ph balance that was still too low.  It took another 8 hours of working and tweaking before his CO2 levels finally came into a safe range and his Ph levels followed.  Now he just needs to maintain.

With the lungs more stable, the doctors turned their attention to the other major organs that appeared to be impaired after the event yesterday--the liver and kidneys.  As a result of the liver not being able to fully clear toxins in Jordan's body, Jordan's skin is turning yellow.  There is no medication to fix the liver and like all major systems, it just has to have enough time to fix itself,  Apparently the liver is good at this.

As for the kidneys, they are not as great at healing themselves.  For some reason they shut completely down last night and without kidney function, Jordan has been unable to release any of the fluid given to him yesterday or otherwise produced and processed by his body.  This means his skin is getting tight and his body is filling up like a water balloon.  To avoid having other organs, such as his lungs, fill up with fluid, the doctors have him on only a life-sustaining minimum level of fluids and had an ultrasound done to determine if the kidneys are blocked by an enlarged stomach.  If the size of the stomach is restricting the flow of blood to the kidneys, the doctors will need to do stomach surgery to reduce some of this pressure. If not, they need to do dialysis to clear the fluid.

I suppose of the two options, dialysis is the least invasive and allows the kidneys time to heal as the lungs appear to be doing.  Either way he is headed to the operating room to get another line put into his already riddled body.  We have gone from minute by minute to hour by hour and still Jordan fights through.

The Hard Road

For some reason the easy road seems constantly under construction for us.  The detours we have needed to take from "normal" with Jordan have been challenging and at times confusing until I remind myself that it is the journey and not the destination that makes the drive worth taking.  The past 8 months have opened my eyes to so much beauty and scenery I never knew existed in life, that it has been worth every moment.  And I hope it is not over just yet.

The easy road today would have been an infusion for Jordan that was uneventful, as all the doctors expected.  The Jordan road was an infusion that at only 1/3 complete presumably gave such a significant amount of T-cells trained for the Adenovirus that they shut his body down.  These cells entered through the lungs and attacked the infection in the lungs and kidney so aggressively, Jordan had a full systemic reaction;  his blood pressure dropped, the right side of his heart slowed down, and he stopped breathing in his mother's arms.  The immunologist said it is the fastest reaction she has ever seen.

I was taking a nap with Aaron when I received the call from the doctor to come quickly to the hospital.  I rushed over and arrived to a room full of medical staff working furiously to give Jordan enough medications and oxygen to keep his body functioning.  We were told he wouldn't pull through.

Over the next 6 hours we watched minute by minute as the medical team gave Jordan one medication after another--one to raise his blood pressure, another to open up his lungs, another for pain, a steroid to help diminish the immune system response, saline solution, more of the first, then more pain medication, and on and on. The bed was full of syringes and fluids and I wonder how the team kept track of it all.

At the same time the respiratory team worked furiously to keep Jordan breathing, first with a ventilator, then by hand, then back on a ventilator, then onto an oscillator to help literally shake oxygen into his lungs, then back the ventilator again.  With such limited breathing, Jordan had built up too much CO2 in his lungs, which changes the Ph balance in his body and can ultimately lead to heart failure if not controlled. The respiratory team needed to keep him breathing while helping him release the extra CO2 and return his body to a normal Ph level of 7.4.

Without any significant improvement after several hours, the doctors again told us to prepare for the worst and started asking us to make decisions no parent should have to make for any child--such as whether we would want them to give him CPR if his heart stopped.  We did our best to respond.  I called Heidi's parents and then mine and told them they needed to be here.

The doctors continued to discuss and work and I could see they were running out of options.  They gave Jordan a paralytic to paralyze his lungs completely so he wouldn't fight the respirator and Jordan hung on.  Finally they were able to stabilize him enough to begin running tests again, which they will continue into the night, and to let the medical team transition and the first team get some sleep.  Heidi and I took a moment to go into a quite room and say a prayer to let the Lord know we wanted what is best for Jordan.  We both felt a great sense of peace in response.

Jordan remains in a very compromised place and he has not moved since the reaction began.  If his Ph levels don't return to normal, we are told he won't move again.  But we are also told that with all of this happening, his blood has remained fully oxygenated and his other organs and vitals have remained strong. His pulse has stabilized, his blood sugar levels are returning to normal and Jordan is again beating the odds every minute he hangs on.  He is sustained by prayers and faith.

I don't know what tomorrow holds, but what I do know is that I received a promise Jordan would be okay and so would we.  I will leave it up to the Lord to decide what that means.

One Down, One To Go

I got 3 hours of sleep.  At 6am Heidi shook me awake to get Aaron out the door.  We arrived a 15 minutes late to the hospital and checked in.  Aaron slept for a few minutes in the car and then hugged me tightly as we walked through the hospital and into the surgery center.  He didn't cry until one of the nurses asked him to change into a hospital gown and he started to feel like something unusual was happening.  The nurses gave him superhero stickers because we told the team yesterday he likes superheros; they also gave him a truck and a green surgery bear, and had him choose the smell he wanted in his anesthesia (he breathes it in through a mask).  He chose bubble gum.

When he left for the surgery room, the staff allowed Heidi to go back with him and I told her she could only go if she didn't cry since that might worry him more.  She agreed although neither of us believed her and as she went to pick him up to take him, he reached for me and said in a worried voice, "I will miss you Daddy".  Then I lost it and broke the rule I just gave to Heidi and cried.  Dad's get to do that sometimes too.

After about 90 minutes Aaron returned looking tired but good.  The nurse said she asked him if he hurt and he said, "yes, my knee hurts. I hurt it 2 days ago" and then showed her the knee he skinned a few days ago.  She asked us if she could keep him.

For the next few hours Aaron recovered by watching cartoons on netflix, eating popsicles for fluid and having doctors and nurses tell him how brave he is.  His arm still had the IV and he had leads on his chest from the monitors and he didn't even try to remove any of it, because 4 year-olds seem to believe that whatever is, is; and so they just go with the flow.

Before letting him leave, the nurse asked Aaron if he felt dizzy or angry since those are some of the side effects of anesthesia.  He told her he did not feel dizzy and that "I feel angry when my parents get mad at me."  She then told him not to run and jump today to which he made a face but said nothing--until we left the room.  As soon as I wheeled him out, Aaron turned to me and said, "I am NOT going to listen to her."  I asked him, "Why?".  "Because", Aaron responded indignantly, "She is NOT the boss of me."  All I could do was chuckle.

Aaron and I visited Jordan in his room before heading back to the Ronald McDonald house for a much needed nap.  He looked good and expects to start the infusion in a few hours.  Glad this one is over and that all went so well; that is one big sigh of relief.