Today is transplant day minus seven and we imagine that Nathaniel is doing about as well as could be expected to this point.  After arriving a week ago, we have been busy with every test in the book, a couple of minor procedures, a walk through Duke Forest (to say a temporary good-bye to the outside world) and a nice visit with some old friends and instructors on the Duke Physical Therapy faculty.  We were officially admitted to the hospital on May 30 (happy Memorial Day...), at which time we began the regimen necessary to prepare for transplant.  This prepatory regimen consists of a few prophylactic (just in case) drugs and a nasty chemotherapy drug (our doctor referred to it as the "lethal" drug), which have to be taken orally.   Since Nathaniel is no less obstinate than either of his parents and since he needs to take many doses throughout the day, the battles seem endless, but he holds no grudges.   What a strange and horrible thing to hold your child down and force him to ingest a substance that is lethal.  You can imagine how frequently we have to remind ourselves that this type of chemo is the only way left to kill the cancer cells and give him a fighting chance.

Last week when we arrived here we were still not certain that this whole procedure was necessary.  His relapse was picked up by a couple of very sensitive tests, and the results of those tests are precise but new enough that they are subject to differing interpretation.   The less sensitive tests did not indicate a relapse, although genetically he has a very complicated and rare form of leukemia, and different physicians interpreted his results differently....of course.  So our choice was this: wait until his relapse was truly obvious, when it would possibly be too late, or proceed with a transplant, which offers a 30% survival rate.  So here we are, giving him the chemo, getting him to laugh and smile as much as possible and gearing up for the battle which lies ahead.

The plan is to proceed with chemo for another six days, take one day to let his body rest, and then, in a perfectly anticlimactic 30 minutes, drain someone else's stem cells into Nathaniel's veins.  That'll be on June 9th.  That'll be a good day to pray for him.  From then on, we have a bit of a tense wait.  Engraftment, which is when the other person's stem cells start to thrive in his bone marrow, usually takes between 3-5 weeks.  During that time, we will try and forget all of the sobering statistics which haunt this procedure, and take solace in the support of our friends, both old and new, and from family.  AND from the fact that this kid has gotten to be pretty tough.

Which brings us, once again, to our appreciation of the support that we have received from you all (or, since we're back in the South and as our friend Mark used to say), from all y'all.  For a family that rarely has difficulty expressing itself, we have found that it is impossible to convey our gratitude for the intent behind all of the thoughts, prayers and support that we have received.   As consistently as we are inspired by Nathaniel's good spirit, so too are we by the response from others to his illness.

As we go through this process, we continue to research and try to learn as much as possible about this terrible disease.  The more we know, the more it is apparent how little is known.  For some of the most important questions there are no firm answers.  But here is some of what we do understand about the how this disease started in our boy:...... we do understand that Nate's leukemia originated in a genetic splicing mistake that occurs in each of our bone marrows about six times per day.   In  most of us, our body immediately recognizes and destroys the cell with the mistaken DNA. Or, the mistake occurs at a part of our DNA that does not allow the cell to reproduce.  Or, the mistake occurs at a point in the DNA that is harmless.  For Nathaniel, however, we know that his whole disease, the tumor that had been filling up his bone marrow, began with one mistake in one cell, which then slipped past security.  Lest we forget how fragile are our lives........

Finally, although we are a long way from home, we're comforted to be here at Duke.   Having experienced many hospitals (as clinicians and now as patients), we know that the professionalism, the consideration and the expertise which we have experienced here are top of the line.  But it IS strange that the initiation of the relationship that ushered Nathaniel into our lives occurred at the same institution that now must provide him the opportunity to remain in our lives.  It worked well the first time, and we're confident that it will work well again.  So keep the faith, brothers and sisters.

Last day of freedom...for a while.  So we're out enjoying Duke Forest.

Nate and mom are enjoying the sunshine in the courtyard where Ingrid used to eat her lunch when in graduate school.

One of the medications that he is starting is called ATG, which acts to suppress his T-cells in preparation for the graft.  From what we hear, ATG and the drugs that accompany it are pretty harsh on the system and can make Nate pretty cranky.  But like we said, for now he is still our chunky little fireball roaming the halls!  He has not quite adjusted to his "leash" (IV pole and multiple lines) and has already ruptured 3 lines in 4 days.  Which makes us so proud of our little overachiever: they say he is going for the unit record.  What is concerning is the fact that he could lose a lot of blood if he tears the line during the night and it is unobserved (a broken line is an easy source for a serious infection).  Just what we needed, another reason to keep us up at night.  The last two times that he broke his line we didn't discover it until blood was soaking through his shirt!  It wasn't too serious, we think, but it sure looked dramatic. 

"Nana" (Greg's mom) and "Papa" (Ing's dad) have been a great help by giving us little breaks and keeping Nate entertained.  Despite such awful circumstances, it has been nice to have family this close together for an extended period.   Papa has taught our son how to scare all of the nurses, but Nate is usually laughing so hard that his "boo"s  come out like "moos" and it kind of loses it's effect.  Nana has been making some great homemade food.   Unfortunately their departures are imminent, just when the excitement is truly supposed to start.  And once again, thank you for your prayers.

Chemo or no chemo, transplant or no transplant, papa and nana still can't stop Nate's drive to the hoop.   You can tell he's a Parry because he's not even looking to pass.

From 11:15 to 11:45 this morning the stem cells which are to provide him an immune system and in effect save his life, flowed into Nathaniel's central line.  For such an visually innocuous event, and for one that Nate pretty much slept through, it was powerful and frightening.  So many of our dreams for our son and for our family will depend on this simple little act, so its probably understandable that its been at moments like this that the impact of it all seems to truly hit home....... and now the wait starts. 

He has tolerated the past two weeks well, and we marvel at a child's ability to shrug off fevers, hives, vomiting and a lack of appetite.   There remain many precious times when he is ready to play, most occurring when his parents are ready for a nap.  He has stopped eating, however, and he continues to be feverish and sick to his stomach, all due to the chemo.  This has not, for better or worse, stopped Nathaniel's development of a strong relationship with Barney.  Nor has it stopped his parents.'  Name a tune, we'll hum a few bars. 

The introduction of Barney is one of our answers to fight boredom for him (and with cyclosporin running on a continuous drip for him, he should soon be as furry as Barney), but if you've ever known a toddler with patience......  Since he can go in the hallway of the ward only if he wears a mask, and since he would rather watch "Barney's Superdupendess Songfest" four thousand times in a row than wear a mask, well, you get the picture.  He hasn't seen the hallway for over a week.

Everyone keeps warning us that the worst is yet to come, probably over the course of the next few weeks.  We're ready.  They say his temperature may reach 104 to 105 degrees for extended periods, he will lose his appetite for at least a month (despite some great home cooking) and all of his other side effects will worsen.  And that's only the expected stuff.  As hard as it is to see a child suffer, we know that this is not the worst of the two evils, and is the trailhead to the path to a cure.  And it is truly amazing how one is able to find moments of happiness and normalcy when all circumstances would indicate exactly the opposite.  The transplant ward, a part of the hospital that sees more than its share of child morbidity, is surprisingly upbeat.  There is a beautiful new addition to the hospital which is dedicated to Jimmy Valvano, a basketball coach at nearby NC State who died of cancer a few years ago.  Jimmy was apparently a pretty spirited guy, and he eventually founded a foundation whose name is, we think, the "Never give up foundation."   In this light, Ingrid has been doing her part to keep the spirits up (see picture) by hanging pictures and thoughts that inspire us for each day that we are here.  Click on the picture below to see a close-up of today's card, and you also check out Nate's photo album for a couple of his new photos.

Finally, one last request: please include a couple of Nathaniel's peers in your thoughts and prayers.  Alex, who underwent a cord blood transplant several months ago, and Katherine, who did the same a couple months past.  The parents of both children have been a great help to us, and their children are fighting the same fight as is Nathaniel.

Click Here

Late in the evening on day minus one, and Nate and dad are having trouble sleeping.  You can see Nate's broviac line, where his medications have been given.  Tomorrow the stem cells that could cure his leukemia will be infused through this line.

We are told that the side effects from the chemo will continue to increase for the next few weeks, that his appetite will remain absent, that the sores in his mouth will remain open and that his weight and hair will remain in a state of decline.  As has become Nate's style, though, he appears to take it all in stride and adapts to all adversity.  Remarkably, the previous bane of his existence, that awful mask that restricts all germs and most oxygen, has now become tolerable.  Good thing, too, since it will be part of his wardrobe not only while his counts are low here in the the hospital, but also at any time while out in public for the next year!

Grow cells, grow.  You see the homemade signs throughout the ward and you see the plea in the parents' faces.  Now that the actual transplant is complete, we all wait anxiously for signs of engraftment.  And we wait.  And we do all that we can to prevent an infection to Nate's defenseless body (try to keep a 16 month old from putting anything in his mouth!).   Engraftment (the new stem cells starting to grow and produce red blood cells, white blood cells and platelets) takes, on average, 24 days. There have been children that have ingrafted in as few as 12 days.  Devastatingly, one or two children out of every ten never achieve engraftment, thus the sense of medical Russian roulette.  So, please concentrate on stem cells migrating into his bone marrow, and GROWING!!!!

Once Nate has engrafted, we are still not out of the woods, in fact the woods will likely start to thicken.  The next big hurdle: walking the medical highwire between suppressing the new immune system sufficiently to prevent graft versus host disease (when the new cells do not recognize Nate's body and they attack it as a foreign object) and allowing the new immune system enough slack to establish itself and to fight infection.   Graph versus host disease (GVHD) can be as minor as a skin rash or as lethal as multi-organ failure.  The whole process gives you the sense of running a tortuous relay marathon, but each time you're supposed to pass the baton and celebrate completion of your leg, you find that you've also got the next leg to run.  You can imagine why we are doing our best to consider only one day at a time.

Ingrid's pregnancy is moving along just fine, and we have reached 31 weeks.  She has been set up with a new local OB, finally gotten the insurance company to cover an out of state delivery and tested negative upon her re-test for gestational diabetes (both Ben and Jerry are breathing a little easier)!   The delivery ward here at Duke is beautiful and is about 100 feet down the hallway from Nate's ward.  We do not anticipate that Nate will still be an inpatient at that time, but it is comforting to know it is nearby just in case.  Nate is also learning about his new brother or sister, who he probably perceives will be very round and will burst through mommy's bulging belly button any day now.

The days continue to meld together without many events happening outside of the hospital.  Ingrid's father (Papa) left this morning to go back to Denver, and we miss him already.  Thankfully, Greg's mother (Nana) is staying on for a few days more, and she is slowly adapting to the North Carolina humidity and daily thunderstorms.  And in what Ingrid believes was an act from God, Greg had his golf clubs stolen when he played golf his first week here.  The fact that Greg's wedding ring was in the golf bag at the time, well, Ingrid does not believe that God had anything to do with that.

So we all continue to do our best.  We pray that we are good enough actors and parents that Nate never once perceives the fear that we sometimes feel like we are drowning in.  And our beautiful child does his part.  He cuddles, he giggles and he smiles when WE seem to need it the most.  So we tell you the same thing that we tell each other:  he's a great kid, we are blessed to have him and we are obliged, brothers and sisters, to keep the faith.

Free at last!  Well, free to roam the hallways, but not free from the mask.  Doing some bike riding with papa, still sporting a head of hair.

Nate and his primary nurse, Trish, getting ready to put him down for the night.

Is this boy Italian, or what.  The first sign of a blond on Barney's Songfest, and he just had to kiss her.

Would a thousand words be enough?......Not even close.  So we're going to be a little heavy on photos, and somewhat light on a barely adequate description of Nathaniel's daily struggles. 

From the above photo, you may have guessed that a whole lot has changed since last week, but in an important sense, all remains the same.  As predicted, Nathaniel has started to feel worse and worse, battling fevers (up to 104 degrees), a pretty consuming rash (you may have noticed) and other crummy stomach and organ troubles (bald is in now, isn't it?).  However, it is typical yet frustrating that we can't be sure of the origin of these symptoms.  Some cruel trick of medicine, it is, that the signs of engraftment precisely mimic those of infection.   So while all that he suffers may actually be very early signs that the transplant is working, we just don't know, and we provide him with continuous antibiotic soups just in case they're not.

In the meantime, Nathaniel has started a course of heavy duty steroids to combat some of the symptoms, including the rash and the terrible itching.  The side effects of the steroids are... well, significant.  He gets pretty cranky, his immune system gets compromised, his internal organs do some revolting and he gets insomnia.  So, yes, exactly, he certainly has more in common with his grandfather.  But it's a scary prospect, when part of the cure (the steroids) can theoretically be beneficial to the disease (by suppressing his immune system).   Hence, we have thrown ourselves into the delicate balancing act between treating graph versus host disease (GVHD) and trying to rehabilitate the defenses of an immuno-compromised child.  Each is treated the exact opposite of the other, and each is equally life-threatening.  Every act taken to squelch GVHD is likely favorable for another relapse or for an infection and visa versa.  Gingerly, we walk.

As you can see, we have little in the way of answers or explanations at this point.  We have but our faith, in our doctors, in our son, in our friends and family and in our hope that God provides the strength to not flinch in the face of a challenge.

Back in the days (last week) that Nate wasn't too macho to cuddle with Dad (the pre-steroid days).

It must be a survival mechanism that we have come to be able to receive good news without elation and bad news without despair.  As has been par for this course, we have both good news and not-so-good news to share.   First the good: something which might look promising may be happening in Nathaniel's bone marrow.  An important figure at this point is the number of white blood cells detected upon a blood draw.  A normal count is around 3.0 to 7.0.  Nate's has been zero since the transplant, as it should be.  The last few days have seen his white cell count increase to .2 and then .5, which is great news, we think (the hesitation refers to the fact that we don't know if Nate's old cells or the new transplanted cells are doing the producing - we want the transplanted cells to produce.  It also refers to the fact that we don't know if the increasing number is a true indicator, since counts that low are often unreliable).   However, just when we imagined that we could start to officially relay some positive news, his white cell count is back to zero.  A fluctuating white blood cell count after transplant is normal, if not somewhat tortuous.  But at least, here on day 19, we are buoyed by the possibility that some activity may be occurring.

The possible "not so good news" is that Nathaniel may have acquired an infection.   A couple of recent tests which look for evidence of the cytomegalo virus (CMV) appear "suspicious."  The virus, which is related to the Epstein-Barr virus, is generally not very harmful, except in individuals with a compromised immune system...........great........   Just to muddy the waters a little further, the best test for CMV is may only be valid when a child has an absolute neutrophil count (ANC) of 1000 (the ANC is an indicator of immune system function - Nate's ANC is zero).   Further, the drug which is used to treat CMV is pretty toxic to the internal organs and can inhibit engraftment.  Confused by the information and implications?  Join the crowd, but keep your fingers and toes crossed.

At the same time, Nate is feeling much better, and for better or worse we've had moments this week of "having our little boy back,"   The rash has diminished, his fevers have been minimal and he's had a lot more spunk over the past few days.  Amazing what a smile can erase.  We've gotten him out in the hall to play, and he's mustered up the Italian in him enough to flirt with most every nurse who enters the room.  He continues to enjoy books and Barney and has learned that grandma really isn't inside the phone. Unfortunately, he's going to have to get by without his Nana starting tomorrow.  She's going home after a month of cooking and supporting us in North Carolina, and we're all going to miss her.

As is unfortunate with most things in adult life, our joy is not absolute and is tempered by the sometimes tragic face of reality.   Nate lost a neighbor on the transplant floor this week, a young boy named Michael.   Spend some time on a pediatric transplant ward and all of the cliche goes out of the sentiment that "he is in a better place," for Michael certainly is.   It's apparent that he and his family fought a brave fight, and we ask that you include them in your prayers.

Finally, we would like to, once again, thank you for your prayers, for your hope and for your encouragement.  Remember that, for Nate and for all of us, there is no rainbow without the rain.  But here's to a few dry days anyways.  Keep the faith. 

Our little bald boy is demonstrative in his disapproval of Nana's selection of earrings.   Notice the dissolution of Nate's rash and the addition of a little bit of weight.

Not yet brave enough to play with the older boys, Nate (on the right) is content watching Micheal, Conner and Amir play with some cars in the hallway of the transplant ward.