Week One - July 17, 2006

    • Joseph is diagnosed with leukemia and began inpatient treatment at Riley Children's Hospital

    • Joseph begins aggressive chemotherapy

Week Two - July 24, 2006

    • Joseph continues chemotherapy; although he has had a few rough days, overall he continues to amaze us with his resilience.   He is enjoying ice cream nights with his brothers, his favorite videos, and the good care of the staff at Riley.  We are overwhelmed with the outpouring of support and kindness from family and friends.   We really appreciate the emails - keep them coming!

Week Three - July 31, 2006

    • 7/31  Joseph has had a pretty good week as we are approaching the end of his first 10 days of chemo.  A couple of days of vomiting at the beginning, but great days after that.  He has been taking a lap or two around the floor, albeit very slowly, but with very little complaining.  His appetite has been good, although I think he is ready for some Amore's pizza at this point!  He has had some visitors and wonderful care from all the staff here at Riley.  Best of all, regardless who is in his room, if they are standing in the way of his video he will shoo (okay push), them out of the way.  It is quite amusing to watch him do this.  It is so wonderful to hear him laugh!

We are so thankful for all the support, love and prayers from all of you.  Keep it coming.  It is truly what gets us through each day.  As we have said, this is a new journey for us, but already we can see the many blessings along the way. 

    • 8/1  Joseph has had a fever this past day and a half. Although we can not be sure if it is due to one of the drugs he is on, they are taking measures to help him fight this as well.  As we move into the "recovery phase" of this stage, we will keep you posted on anything new.  Thanks again for all the e-mails.  Our love to all!

    • 8/2  Joseph has had several challenging days in a row now.  He has completed the first series of chemotheraphy, and now his body is "bottoming out," which is apparently normal after what he's been through.   He'll spend the next 20-30 days or so here at Riley recovering with constant monitoring for infections, sores, etc. that come with having no white blood cells left from the chemo.   He's been fighting high fever and is obviously uncomfortable, but he doesn't complain.  He just holds on tight to us and the nurses (he's a 16-year-old boy after all).   

On days like these, his cognitive limitations can be somewhat of a blessing as he presumably isn't fearing, as most of us would, that he will always feel like this.   But it is meanwhile painful for us that he cannot tell us what he feels, and that we cannot explain things to him and reassure him with words.   But we've always thought that Joseph understands more than he can demonstrate, so hopefully just holding him is reassuring.  

• 8/3 night time:  Joseph is very restless, his appetite is starting to wane and the fevers insist on hanging around. The doctors have assured us that this is what our days will be like for awhile, so best to "settle in" to this routine (or lack there of).   Joseph has started to lose his hair today as well.  We are sure that he will look quite handsome as receding hairlines are prevalent on both sides of the family!  Please know that we continue to find bright spots along the way and you are all a big part of those.  We have threatened to "cut Joseph lose" and head to the beach but the staff here at Riley doesn't find that as amusing as we do!.  We will continue to keep you all informed as we enter each new phase.  Please do not be discouraged by what we write, we want to tell you what is going on as thoroughly and honestly as we can.  This journey holds many blessing for us, and we appreciate every one of them. We were talking with a friend this evening and were reminded that when these things happen to those around us we tend to hold our family closer.  Joseph has had that impact on so many through his life, and hopefully is now as well.  This is a gift from him we share willingly.    We are holding you all closer now as well. 

  • 8/5 Joseph doesn't know it's Saturday, but we do and it feels like a rest day.   Joseph has had several very tough days in a row.  The various symptoms/after-effects make him restless and uncomfortable, and no doubt he's also in pain, so his sleep has been erratic and brief.   Fortunately the medical staff now has him on lots of drugs to counter all those things, and this morning he is finally getting some rest.    His nurses are extraordinary - the last few have taken a very active role in helping try to solve his discomfort.       We are hanging in there thanks to lots of love and support. 

     • 8/6 Joseph slept solidly through the night for the first time in many nights, and at least in the last 18 hours his fever is much better.  Yeah!

Week Four

     • 8/9 Joseph's high fevers have been gone for several days now.   But he still has fairly constant diarrhea (not uncommon they say from the chemo), and hasn't really slept for 3 nights.   On the positive side, the doctors are pleased with his daily lab results.   

     • 8/10  Joseph has smiled and laughed several days in a row.   The fever remains gone, and he seems to feel better.  He's making progress.  

     • 8/12  Joseph continues at the hospital with a steady recovery from the first chemotherapy sessions.   He started eating again yesterday, and it appears the diarrhea might be gone.   The plan is to continue to monitor is blood tests each day, then barring any complications once his lab results reach certain thresholds, he could come home for a few days before heading back in for the second month of chemo and recovery.  

     • 8/13 3:00 a.m.   Joseph has always had odd sleep patterns, but those are exacerbated in a hospital room where there is no night and day, and where the IV alarms and regular checks on vital signs continue.   So once again he is up now and probably will be all night, but fortunately he got lots of good sleep today, and he's much more comfortable than he has been in a long time.   So far he has responded appropriately to the first round of chemotherapy, with the anticipated ill effects and the hoped-for recovery.    Unfortunately he'll have to endure more of the ill effects soon with Round Two, probably in 10 days or so if all stays on track.   But it's encouraging that he's handled Round One reasonably well (easier to say today than 10 days ago).     And, he's a favorite of the nurses (even if, or perhaps because, he occasionally gropes while dishing out hugs).   Life is good, even when challenging, which Joseph has shown us repeatedly.

Week Five

     •  8/14  evening  JOSEPH IS HOME!    They found the small fridge with beer so kicked us out.  Actually, Joseph had recovered from the first round of chemo to the point where he doesn't need further inpatient care for now, and he's not built back up to the point where they can start the second round of chemo.   So, as is typical in this regimen, he's home for a few days until  lab results show he can start round two.   We'll go back to Riley outpatient for blood work every other day until he meets those thresholds, then start back inpatient for another similar round.   So long as he remains fever free he's got a few restful days at home.    He can eat whatever he wants, so his diet will primarily consist of Giorgio's and Amore's Pizza.   

     Thanks for helping us through Round One.     It's too early to make any predictions, but Joseph has handled this well so far.   When parents take their child inpatient with leukemia there is the natural fear that the child might not come home again.   So having Joseph home is a blessing, and builds optimism for the journey ahead.   

     •  8/16  Joseph seems happy to be home, though his weight-loss and fatigue are even more evident here.   He can't really stand or walk without assistance presently, and his appetite is not 100%.   But he's laughing and smiling, and it's good to all be in the same place.     His first outpatient workup will be tomorrow, Thursday, which will be the first read on when he'll probably go back in for round two.  School starts for the other goobers tomorrow, which is probably good for them to have a normal schedule and focus on them.

     •  8/19 Joseph is still home and doing ok.  He had blood work at outpatient on Friday, which indicated that it will likely be at least a week or more before he is ready to start round two of chemo.   So far he does not have any fever or infections.  He's starting to get his appetite back, and overall seems relatively comfortable    We'll be back in early next week for more blood tests.

Week Six

     •  8/22   Joseph remains at home free of infection, which is good news given the low immunity.   His blood work yesterday showed modest improvement in the various numbers they check to determine when he can start round two of chemo.   He'll definitely be home all this week, with further blood work later this week.    

      •  8/25  Joseph completed a full week at home.  He's working on putting a few pounds back on and seems stronger.  The periodic outpatient visits and blood work are going ok.   His brothers completed their first week of school, so there is a bit of surreal sense of normalcy for the time being.  

Week Seven

     •  8/29  Joseph is scheduled to go back to Riley as an inpatient on September 6 for round two of chemotherapy.  He'll have a brief surgical procedure to implant a central line for easy administration of chemo, other drugs, transfusions, etc.  Then the second chemotherapy round begins, which will last 8 days with about 3 weeks inpatient recovery.    Joseph is doing fine at home presently otherwise.  

     •  9/1  A new month with new challenges and opportunities.   Joseph is still on track to go back as an inpatient September 6.   In the meantime, the doctors cleared us for a family weekend in Michigan City, so we're heading up today through Monday (and celebrating our 17th anniversary as well).   Thanks for all your thoughts, prayers, and support.  

Week Eight

      •  9/5  Joseph had a restful weekend with us all in Michigan City.     Today he had routine outpatient blood work.    He knows the drill now so well that when the nurse gets the rubber out to put on his arm, he extends his arm and waits patiently through the blood draw (with no tears, grimaces, or other negative reaction).    His "numbers" continue to trend upwards but are not yet to the levels necessary to start round two, so the start of inpatient round two is delayed for a week or so.   He'll have further blood work later this week, and will likely then be admitted next week.  

     •  9/8   Joseph had follow-up blood work done this a.m.    The numbers are climbing slowly, but are still below the safe levels to start round two of chemo.   He'll have further blood work done late next week and we'll see where we are.    Meanwhile he has stayed healthy and is building his weight back up.   A Notre Dame win over Penn State would complete a successful week.  

Week Nine

      •  9/11  Five years ago today, in the midst of the unimaginable horrors of the new era of terror, we felt strangely blessed for and by Joseph because he was unaware and unafraid.    This poignant anniversary of 9/11 recalls some of those same feelings.    Joseph is now scheduled to start round two of intensive chemotherapy on Tuesday, September 19, regardless of what his lab work shows later this week.   His lab results are trending in the right direction, so the doctors are comfortable starting him next week (and indeed now want to get him started).   So as the inevitable challenges and severe discomfort approach for Joseph during this next phase, we once again take some comfort in him being unafraid.  

     •  9/15   Joseph had lab work yesterday.   His numbers continue to move in the right direction, and the oncologist confirmed that he will start round two of chemotherapy on Tuesday, 9/19.    So we are spending this weekend in Michigan City (a side trip to catch a gridiron match under the Golden Dome is highly probable).    

         On Tuesday Joseph will have surgery to place central line so that the meds can be fed directly into him throughout the remainder of his treatment.   This is a common and very low risk procedure.    He'll also have bone marrow drawn so they can get a complete picture of how they have done so far in killing off the leukemia and in otherwise analyzing in great detail how he is doing physiologically.   So Tuesday's results are significant, though not all telling (perhaps like the 1st quarter score of an ND game).    Regardless of what the marrow shows, round two will begin promptly, probably that night.    

         Oddly enough, other than his near-bald 16-year-old head, Joseph shows no outward signs of cancer.   He's back up to 104 pounds (my 10th grade weight during cross-country season), has been fever and infection free since the end of round one, and is happy and comfortable.    So it is unnatural as parents to put him back through the rigors upcoming, but it's of course the right choice.    This time we know the who, what, when, and why better than the first round  that involved hours, not days, of notice.    And our support system is extraordinary (and nationwide!).     So let's bring on round two.  Joseph is unafraid, so we'll try to be like him.  

Week Ten

     •  9/19  Today was an interesting day, proving that it's good to be in this country.   When we hear gripes about our health care system we get irritated, because - like today - time and again we've been in great hands.   Joseph underwent surgery today to place the central line so that he can have continuous meds, chemo, etc. going forward.   This was Joseph's 7th surgery in his young life, but the procedure was brief and relatively routine. 

     Afterwards, however, as part of routine post-operative due diligence, x-rays revealed that Joseph had a significant pneumothorax in his right lung, in essence a collapsed lung.  He has had a moderate pneumothorax since at least late last year that has been asymptomatic.   And, pneumothorax is apparently always a risk in surgery (indeed the docs so discussed with us orally and in writing in the pre-operative consent).   

      So, Joseph returned to the operating room for his 8th surgery, this time placement of a chest tube to reinflate his lung and then allow vacuum and drainage.   This procedure went fine, his lung reinflated, and he's now up in his room sleeping peacefully.   They'll watch his lung and drainage and, if all is well, he'll lose the chest tube in a few days.     It's undecided yet whether they will start the chemotherapy right away, or wait for more certainty on the lung.     

     As for the central line, barring complications such as infection, the line will be in place throughout the remainder of his treatment, into 2007.   He was amused before surgery by the surgeon's caps, and was in a great mood.    He is in recovery now and will then go to the oncology unit for about one month.     We have our schedule in place for being here with Joseph 24/7, and start the month with hope and optimism.

     •  9/21   Joseph is comfortable despite still having the chest tube in place.   His lung has remained inflated, though he still has some drainage and the vacuum assist.   Today they plan on removing the vacuum assist to see how he does on his own with the chest tube in but sealed.   If no issues, the tube might come out in a day or two.     In the meantime chemotherapy has not yet started until this is stable.  

       Meanwhile, we're now also dealing with pulmonologists and geneticists.   During Joseph's first year he was seen here by a geneticist to see if his collection of anomalies fit into any known syndrome - at the time it did not.    The recent pneumothoraces (apparently plural for pneumothorax, go figure) and some other items have them all questioning whether Joseph has a connective tissue disorder.    Joseph will have various tests over the coming days on that front.

       Also, on the positive front, two of Joseph's brothers are matches for possible bone marrow transplant.   This possibility is a long way off with many other hurdles to get through, but it is at least in the mix.   More details to follow as things progress.   The boys know about this and we've talked it through with them.   They are all fine.  If this ends up occurring, it is a simple and very low-risk procedure for the donor (anesthesia, marrow draw, up and around the same day with some soreness possibly).    We've explained to the boys that if this possible treatment presents itself down the road, it is just one of the hundreds of types of treatment that Joseph is getting, and that Joseph's success is not dependent upon anyone other than the skill of these great medical professionals and the grace of God.

      So, we are managing to work our way through countless new medical terms, facts, and figures, and are taking each day as it comes.    Thanks for the continued prayers and support.

     •  9/23   It's the weekend, which means fewer interns, residents, and doctors coming in.   Joseph still has the chest tube in, but chemotherapy started nonetheless Thursday night.   Joseph is uncomfortable presently with the chest tube, but tolerating everything ok (though he was up all last night with Vivian).    No news to report otherwise - the rest of us will go to church and dinner tonight while a friend watches Joseph for a few hours.  

     •  9/24   Saturday night was good for Joseph - doctors removed the chest tube, the Irish won in a thriller, and Joseph got a good night of sleep.    He's much more comfortable today, despite day 3 of chemotherapy.      

Week Eleven 

    •  9/26  Joseph is 6 days into the chemotherapy.   One drug that they use is orange - very strange to watch it go into him.  The biggest challenge since getting the chest tube out was keeping up with his output - they had increased his IV fluids during the chest tube because he wasn't taking in much liquid.   But what goes in most come out . . . . and diapers only hold so much fluid.   So we were literally going through a diaper an hour, and even then couldn't keep his clothes dry all day.   Fortunately he picked up his drinking so they cut the fluids back, and we're back to a reasonable level.   Sometimes the little things are the big things.    Anyway, Joseph is tolerating the chemo reasonably well so far - only one bout of modest vomiting and he seems more comfortable than last time around.   We're not sure if it is the calm before the storm, but each good day is a great day.

     •  9/28  One lesson we've learned through Joseph is that the unexpected is to be expected.   So it was today.   Joseph has been doing very well tolerating the chemo so far, but today a routine chest x-ray revealed yet another spontaneous right pneumothorax (lung collapse).   It was substantial enough that prompt surgery was required, particularly because he is in the stage of chemotherapy where his various blood counts (platelets, white blood cells, hemoglobin, etc) are sharply declining, as expected from the chemo.   If a procedure were delayed, he would have been at greater risk of bleeding, infection, etc in the coming days.   So Joseph went in tonight at 8:30 for the 9th surgery of his life.  

       Surgeons performed two procedures.  First, they searched for blebs (blisters) on the pleura (the membrane covering the long) that can cause pneumothoraces.  None were discovered.   Second, they performed a pleurodesis, a procedure where they literally scrape the membrane covering the lung to cause irritation and bleeding.  They then inserted a chest tube, and applied vacuum pressure to pull the lung to the wall and then let nature - inflammation and scarring - take its course to bond the lung membrane to the lining inside the ribs. 

        All this went as planned through several hours of intricate, deliberate work.   Joseph is now in recovery as midnight approaches.    He'll likely have some discomfort from the pleurodesis, the chest tube, and the two additional incisions made for the videoscope for visualizing the procedure.   He'll have the chest tube in for at least several days, with vacuum pressure, to help keep the lung connected to the chest.    There will remain a risk of future spontaneous pneumothoraces, though hopefully this procedure will prevent the serious ones requiring intervention.    We shall see.

       Meanwhile, Joseph has 2 bags of chemo left, which will be administered through the night.    Then he'll have the dual challenge of recovering from surgery with the chest tube along with the anticipated ill-effects from the 8 days of chemo.     Please keep him in your thoughts and prayers.  

     •  9/30  Joseph is now handling the post-surgery discomfort and chest tube reasonably well.  He completed his chemotherapy, so now we wait for his numbers to drop in the coming days, and we'll see what develops.

Week Twelve

     •  10/2  The weekend was relatively quiet.   Joseph still has the chest tube in and likely will through the week.   This is a source of some discomfort, though he seems to tolerate it well.   His various blood levels are bottoming out, as expected. He's receiving periodic platelet transfusions as a result.   So far his appetite is still good and round one's miseries haven't surfaced in round two, but it's still early.    

     •  10/4  Joseph is fighting fevers, though so far not as extreme as the first round of chem in July/August.    His appetite is diminishing, and he's obviously uncomfortable.   So we're visiting the dark side - we'll see how long and how dark.     His chest tube might be removed today if the x-ray is clear (as it has been since the last surgery).   

     •  10/6  The surgeons removed the chest tube Wednesday, which is good, of course, as it means less discomfort and more freedom for Joseph.   The downside is parental anxiety - worrying a bit that if anything happens with the lung another procedure might be necessary.   But so far the xrays look good.    Otherwise the fevers continue but Joseph is still eating, despite mouth sores.   He remains very tolerant.     

     •  10/8  Joseph's lung x-rays look good so far.  On the chemo front, Joseph's at or near rock bottom in terms of the various blood levels, and is getting platelets and blood transfusions regularly.    He is in the high-fever mode (up to 105 this a.m.), so is of course very uncomfortable.   His appetite is diminishing - if he is unable to eat reasonably well today they will start feeding by I.V.   Yet somehow through all this, yesterday he was laughing and smiling briefly.  

Week Thirteen

     •  10/10  Today is Gino's 9th birthday, so we all celebrated together in Joseph's room, and somehow it worked pretty well.   We're rarely all together while Joseph is in the hospital, so any time together is special.  To the boys' credit, they seem to understand that as well.     Joseph was fever-free all day so more comfortable.  He appears to have "bottomed out" over the weekend and Monday, and hopefully is on the way back up - the next day or two should confirm this.

     •  10/12   Joseph is home again!   His numbers rebounded very quickly, and the doctors released him  earlier than anticipated with heavy doses of antibiotics (which are administered by us through his central line).  He'll be on those for 6 days at home, every 6 hours, but he did not need further inpatient treatment recovering from the second round of chemo.    He's happy to be home.

      The probable course of treatment from here is probably 3 weeks or so at home, regular outpatient clinic visits for blood draws etc., then round three of chemo in early November.    Depending upon how things look, after that round the transplant option comes into play.   Thanks to all for the continued support!

    •  10/15   This is an interesting process, to say the least, with many ups and downs.    On the outside, Joseph now looks like the rest of the "cancer kids" he shares inpatient and outpatient time with at Riley - nearly fully bald, with his thick bushy eyebrows almost gone, and even his beautiful long eyelashes disappearing daily.   On the inside, however, apparently some good things are happening.   Friday during his outpatient visit, his ANC (Absolute Neutrophil Count) was as high as it has been since diagnosis (which is good).   It was 700, after being only 2 days prior at discharge.   For more info on ANC, see http://www.medterms.com/script/main/art.asp?articlekey=20030 

     All these numbers are relative and need context, of course, and we don't purport to understand them well.   But to give you some general idea:  Neutrophils are key components in the defense against infection.    normal ANC is 1500 - 8000; safe ANC is > 500.  Joseph's form of aggressive chemotheraphy reduces ANC to zero, thus the need for long inpatient stays as he is relatively defenseless.    When Joseph was discharged after round one, it took 5 weeks for his ANC to rise from 100 to 400.     This time his ANC rose nearly 600 points in 2 days.    

      Anyway, this is definitely good news.   The oncologists are both surprised by the quick progess and pleased.   It doesn't mean success by any means, but is suggestive of good things happening.   It probably means - and we'll know for sure soon - that the two rounds of induction chemo have brought about remission.   This does not mean cure, as the battle continues and the risk of active leukemia cells remains (thus the need for further chemo and transplant).    But it would mean the absence of visible leukemia cells presently.  

     So, here is the current plan.    Joseph will be home for one more week, continuing a heavy dose of IV and oral antibiotics (plus as many slices of pizza and chocolate chip cookies as a 16-year-old can consume).  On October 23, he'll return as an inpatient.   A bone marrow draw will be performed first, which will tell us whether he is, in fact, in remission, and if not, how close he is.    Round Three of chemo will then begin promptly regardless, with 5 days of 2 chemo drugs (as opposed to 3 drugs in round two).   Assuming remission, Round Three is called consolidation therapy, which is to destroy any remaining leukemia cells and prevent a relapse.     After the 5 days of chemo, on average the recovery inpatient stage is 20-23 days.  

      After Round Three, a short recovery period at home would take place, then if everything is in order, then stem cell transplant would take place.    That is a complicated subject we are learning more about, and we'll provide more detail as it approaches.   In general, that treatment - though it has its own unique risks (rejection, infection, etc) increases the 5-year survival rate for AML patients by 10% or so.  Also, it typically reduces the total chemotherapy regimen, a potential positive given the potential long-term ill effects that chemo can have on various organs and systems. 

      Meanwhile, back to Joseph.   He really is amazing.   He had not walked for over two weeks while undergoing Round Two, yet is back walking about the house and up and down stairs.   He misses the nurses, no doubt (what 16-year-old boy wouldn't), but is relatively comfortable and content at home.   He tolerates the endless oral meds (including 2x during the night), and is leaving his central line alone.

       As for us, we're hanging on and remain optimistic, but we're pretty worn down.   We both feel like we're swimming against the current.    It is challenging trying to be good parents to all the boys and tending to the daily responsibilities of life otherwise.    Finding time together, just the two of us, is the hardest.     Without the amazing support of family and friends, we do not know how anyone could manage.   We encounter many others going through this - including single mothers from distant locales with a whole host of family and economic issues - that reinforce how blessed we are.      We do not say thank you enough, but trust that everyone knows how much we appreciate your support.    Stay tuned.   The journey continues . . . .

Week Fourteen   

     •  10/17  Today is Independence Day as Joseph completes his every-six-hour I.V. antibiotic (which takes about a 2 hour cycle with pre-treatment with oral medicine then up to 90 minutes for the I.V. to finish).   Joseph has managed to pull the I.V. bag off the tube a few times, so he has to be watched carefully during the process.    He's comfortable, eating well, and starting to catch up on sleep.

    •  10/20    Joseph is fine (other than his usual odd sleep patterns - he was up most of last night).  We're trying to gear back up for Round Three starting on Monday.  A Notre Dame win over UCLA tomorrow would help the men in the household, anyway. 

Week Fifteen

    •  10/23   Today went well.   Joseph had a battery of tests, including xrays (chest is fine), bone marrow draw, and spinal tap.  The preliminary results on the bone marrow draw are very encouraging, suggesting normal blood physiology consistent with remission.   Final pathology work on the bone marrow draw is expected tomorrow.   Once that is received, it will determine the precise "cocktail" of chemo drugs that will be used.   So Joseph will not be admitted until tomorrow at the earliest once a bed opens up on the oncology floor.     Sadly, the demand for pediatric oncology care is so great that sometimes the floor is booked solid.    There are too many beautiful young children fighting these battles. 

    •  10/26    Joseph is in remission!  Monday's bone marrow draw showed no leukemia presently.    This is great news.    This does not mean Joseph is cured or that his journey is complete.   To the contrary, medical literature suggests that without further treatment, 90% of AML patients would have a recurrence of disease within weeks or months.     So Joseph is back at Riley undergoing consolidation chemotherapy to fend off relapse.    This process involves five days of intense chemotherapy, followed by an estimated three weeks of inpatient recovery.     Therafter, if all is well, he'll undergo another round of chemotherpy as he starts the transplant phase.    

         So, there is good reason for continued hope and optimism, coupled with the reality that the journey ahead will be long and challenging.

    •  10/28    As always, weekends are more enjoyable here at the hospital without the pressures of school and homework for Joseph's brothers and work deadlines, plus there is less traffic and fewer interruptions throughout the day (allowing more football to be watched!).    Joseph is in the next to last day of this chemo cycle.  This cycle is brief but intense; Joseph is responding presently by sleeping like a hungover college kid.    In a few days the ill effects of the chemo will likely kick in, and we'll see for how long.   But his spirits are good and appetite is still fine, and no fevers yet.   

Week Sixteen

    •  10/31   Halloween was good for Joseph at the hospital.   He's done with round 3 of chemo and just waiting for his counts to hit bottom then recover.  But so far no fevers or significant misery for him this time - we'll see what the next few days hold. 

    •  11/3  Joseph's numbers are continuing to drop, as anticipated (that's what chemo is intended to do - kills the bad stuff and the good stuff), but it's taking some time.   Meanwhile he's been fairly comfortable, though last night while sleeping he had vomiting and diarrhea.    His platelet counts are low so he's getting platelets.   Hopefully his numbers will bottom out soon so he can be on the rebound.  

Week Seventeen

    •  11/6  Hopefully the word for the week is boredom.    Nothing exciting is happening here at the hospital.   Boredom is good here.   No surgeries, no major issues, no particular misery for Joseph.    Just boredom.       Joseph's counts finally bottomed out today, so hopefully they will start recovering soon.   He's been getting transfusions for several days and probably will for another day or two.   Amazingly he's still eating well and seems reasonably content.     We'll see what the next few days hold.      

    •  11/10  Joseph's counts have been bottomed out all week, and hopefully will start back up soon.   Last night he developed a fever (the oncologists said his lack of a fever this week with his low counts was surprising).    But his appetite is still fine so far.      

       Yesterday we met with the stem cell transplant team at length.  Here's the tentative schedule.    After he recovers from this third round of chemo and goes home (probably within 2 weeks), Joseph will likely be readmitted December 13.  He'll then undergo 8 days of intensive chemotheraphy to prepare for the transplant (basically to wipe out his bone marrow).  Then he'll have a day to let the chemo wash out of his system, then on December 22 he'll undergo the stem cell transplant.    His brother Nino will be the donor, through a simple outpatient surgical procedure (under anesthesia) in which bone marrow is drawn from the rear of his pelvic bone.    Then Nino's bone marrow will be transplanted into Joseph intraveneously.     Then, for an estimated six-seven weeks, Joseph will be inpatient in the sterile transplant unit where he will be monitored very closely.   Typically this stage involves a significant amount of discomfort from the chemotherapy, plus risks of infection from suppression of the immune system to reduce rejection.    But the probabilities of long-term success are materially enhanced with the transplant option (plus it avoids several additional chemo rounds).   So that's the current path, and we're fortunate to have this option available.  

    •  11/11   Joseph's neutrophil counts started to rebound today after five days at zero, so he's starting to recover from the 3rd round of chemo.   He still has a fever (101 - 102 generally) so is getting antibiotics by I.V.  He seems "ok" overall - lethargic but not miserable.    Yesterday he had a visit from Scott Rolen of the St. Louis Cardinals, a seven-time gold glover at third base.   Every few weeks a celebrity or athlete stops in to visit the kids (the list so far includes Jeff Gordon, Tony Dungy and his wife, and some air force pilots).    We have a great photo of Joseph with Scott Rolen, reaching out to hug him just like Joseph hugs everyone.   One of the beautiful things about Joseph is that he doesn't discriminate in any way - everyone is equal, from the custodians who clean his room, the oncologists and surgeons, and even major leaguers who stop in.   Joseph reaches out to them all equally.

Week Eighteen

    •  11/13   Joseph is going home today!   He is fever free now, he's eating well, has no active infetion, and his counts are rising.  

     •  11/15  Joseph is home and happy.    He's fever-free and only on one I.V. antibiotic every 8 hours.     He'll have regular outpatient visits between now and the December 13 next admission for chemo and stem cell transplant.      

        Today was the annual Riley Foundation dinner.   Joseph was one of several patients featured.    The video at this link was shown featuring Joseph:   http://web.mac.com/candeloro/iWeb/JosephMaley/Joseph%20Maley.html

Week Nineteen

    •  11/20   Joseph is doing fine at home.  No fever, no infection.  Just his usual odd sleep cycle (up much of last night).    Today he had a half-day at Riley outpatient with various pre-transplant screens, including nuclear medicine to test kidney function, CT scans of chest and sinus, blood draws, and a physical.    He slept through most of it.     Tomorrow Nino has his blood draw and physical there to begin the donor work-up.    

    •  11/23 - This Thanksgiving Day, we have much to be thankful for, particularly family and friends who have helped Joseph and our family in his battle with leukemia.    We're also grateful to so many skilled doctors and nurses who have given us hope.    Hope is defined as "the feeling that what is wanted can be had or that events will turn out for the best."   As Joseph prepares for stem cell transplant, we have been given the gift of hope for Joseph's continued progress against this disease.    Happy Thanksgiving.

Week Twenty

    •  11/27 - Despite the ND loss to USC, spirits are high with Joseph home and doing well.   Today he has outpatient surgery (spinal tap, bone marrow draw, and dental work), all part of the pre-stem cell transplant work-up.   So far all is still scheduled for December 13 for inpatient admission and 8 days of intense chemotherapy followed by stem cell transplant on December 22.    

    •  11/29 - Joseph tolerated the outpatient surgeries relatively well, but has been sore and tired since.   All the tests came back with good news - no leukemia cells present as of Monday.   So the green light is still on for December 13 start of chemotherapy and then December 22 stem cell transplant.      Today Joseph had an eye appointment, but got sick as soon as we got to the waiting room (one real downside of him being non-verbal is his inability to tell us how and what he feels), so after cleaning him up we rescheduled and brought him back home - he's sleeping all day now.  No fever, so hopefully it was just from being worn out.

Week Twenty-One

   •  12/05 - Joseph seems to be feeling better.    His sleep pattern has been erratic, with only one night of solid sleep in the last 10 days, but he's making it up during the day.     This week he has his final pre-transplant physical.   Then in on the 13th for chemo and then transplant on the 22nd.     Although it will be a unique holiday season with him in the hospital, we're getting the gift of a second chance.   

Week Twenty-Two

   •  12/11 - This week starts a new chapter in Joseph's journey.   Today Joseph will undergo an all-day procedure with administration of particular drug early in the day and then 15-minute blood draws (from his central line) through the day to monitor the drug levels so that the doctors can be very precise in upcoming dosages.  On Wednesday Joseph will be admitted inpatient to start 8 days of chemotherapy to destroy his bone marrow, followed by the stem-cell transplant from Nino on December 22.  It's a bit surreal preparing for the holidays and this medical journey simultaneously, but both offer gifts of hope.

   •  12/13 -  Joseph has endured 22 weeks of treatment now, and thanks to the skill and care of countless doctors, surgeons, and nurses - plus  researchers and families we'll never know who have undertaken great risks previously in new and aggressive treatment protocols - Joseph begins what is hoped to be the fourth quarter in his inpatient treatment.    Today he is admitted at 8am and begins his 8 days of aggressive chemotherapy to destroy his bone marrow in advance of the December 22 stem-cell transplant.  As parents we feel the support and prayers of family, friends, and even complete strangers from communities afar as Joseph's story has spread among many.    We enter this phase knowing that we are in good hands, that there is reason for cautious optimism and hope, and that each day with Joseph is a great gift to be celebrated.   Life is good.   Bring it on.

   •  12/15 -  Joseph has gotten through the first two days of chemotherapy reasonably well.   He gets this first drug every six hours for four days.   So far he's tired and lethargic, but doesn't seem too uncomfortable.    The staff here in the stem cell unit is excellent.  

   •  12/16 -   Joseph is completing the first four-day cycle of the first chemo drug, and then starts the second four-day cycle with a different chemo drug.   So far he has handled the first one very well.    His appetite is good and no problems yet otherwise.

Week Twenty Three

   •  12/18 -  Today the toxicity of the chemotherapy finally caught up with Joseph.   He was restless all through the night, then vomited several times today.   He's sleeping now as the Colts are finishing up the Bengals.       With Christmas rapidly approaching, we have lights up in his room and Vivian made a small tree.    Rick Carlisle, the Pacers coach, stopped by today to visit kids on the floor.    Two more days of chemo for Joseph.    If all goes well, it will be his last ever.   

   •  12/20 -  After Monday's sickness and being up most of the night Monday, Joseph bounced back well Tuesday and seemed to feel well.  Today he seems good so far also.     Today is his last day of chemotherapy - hard to believe.      Tomorrow will be a quiet day for Joseph, Nino has one last blood draw tomorrow, then Friday a.m. the stem-cell transplant will occur.      This is a great country, indeed. 

   •  12/21 p.m. -  This extraordinary journey started 5 months ago to the day.    Tomorrow Joseph gets an early Christmas gift of love and bone marrow from his brother, Nino.     Joseph has somehow endured the 8 days of chemotherapy to kill off his own bone marrow - sometimes referred to as the "sledgehammer" by the oncologists - with remarkably little difficulty.    His counts are continuing to drop, and will likely bottom out in the next 5-10 days with resultant risks and discomfort, but so far he's winning the battle.     

      As for Nino, Joseph has given him the gift of untapped courage, quiet confidence, and humble pride.    Nino has handled all this magnificently, from researching the procedures to befriending the medical staff.    He checked out fine today with the final phsyical and blood work, and is enthusiastic about undergoing tomorrow's surgical procedure.  

      As for us, as we close out this first chapter in Joseph's journey, we are eternally grateful for the support, prayers, and goodwill of countless friends and strangers.    When we reflect back on the year that was 2006, we think back not with anguish or despair, but instead with renewed faith in the human spirt.    And while the ultimate spiritual impact of prayer is beyond our mortal comprehension, we know this much for sure:   we have felt and continue to feel - in powerful ways that are difficult to articulate - the prayers and support of so many.   Those prayers have lifted our hearts every day, and have enriched our family in unimaginable ways.   

 

• 12/22 Day of Days. Today Joseph is scheduled to receive a stem-cell transplant of his brother Nino's bone marrow. The surgical procedure for Nino, scheduled to start at 8:00 a.m., involves extracting a large volume of bone marrow from each side of the rear of his pelvis, through a device that is best described as "corkscrew-like" in terms of appearance. Nino will be under general anesthesia, and is expected to be home in the afternoon - probably sore and on Tylenol with codeine for a day or two. Nino plans on having us write: "Fragile - This Side Up" on his lower back before we head to the hospital to amuse his doctors and nurses. How can we deny him his humor?

As for Joseph, the bone marrow - which looks like blood but is thicker/spongier - will be infused into him intraveneously through his central line - much like a blood transfusion. So it will be painless for Joseph.

The science of all this is extraordinary. Essentially they have killed off Joseph's bone marrow, then they will put in a fresh batch from Nino with the hope that it regenerates without leukemia.

We'll update in the afternoon/evening.

• 12/22 11:30 a.m. Nino's procedure is concluded, and it went fine. Nino was very brave this morning. He went under anesthesia with no problems, and they successfully harvested the necessary amount of bone marrow. We saw it (a large baggie full in a cooler on its way to stem cell processing). Nino is now back in his outpatient room for a few hours recovering from the anesthesia, but he's awake, alert, and fine. The doctors and nurses enjoyed his message on his back: "Yo, Merry Christmas. Fragile: This Side Up" Nino has matured beyond his years during this amazing process.

Joseph is fine this morning - he'll be infused at 2pm with Nino's bone marrow through his central line, and that will take about 2 hours. It will be uneventful for Joseph today, but if the science works, it will change (and preserve) his life.

1:00 p.m. The infusion of Nino's stem cells into Joseph started today at 1pm today. Nino is still in recovery but is fine - not too much discomfort so far. He'll be home this afternoon.

4:00 p.m. The infusion took 3 hours (gravity drip through the I.V. central line) and just completed. Joseph is running a low-grade fever, but nothing remarkable. Nino is fine, up and around, playing video games, and just waiting on his blood test (4 hours post procedure) to make sure his levels are ok.

11:00 p.m. As the day winds down, Joseph is fine. Nino got home at 6pm, is a little sore, but is in great spirits. We're thankful for an extraordinary day and this second chance.

• 12/23 - Nino returned to the hospital today for a routine follow-up visit; they changed his dressing and he checked out fine. He's a bit sore and tired, but is holding his head up proudly. Joseph is doing ok as his numbers drop from the chemotherapy - he's surpised the doctors so far with few symptoms from the chemo, though they expect those will eventually surface in the next week. So far no rejection issues from the transplant beyond a low grade fever, though of course it's early and he's on immune suppression drugs. It's very peaceful here as Christmas approaches.

• 12/24 - Christmas Eve - An Interesting Day - Nino is fine - no longer needs any pain reliever. Joseph was restless last night, and when he awoke this morning there was a blood stain on his shirt and sheet from a leak in his central line (on the portion of the line that hangs outside his body). The line is now several months old, and although Joseph has been great about not pulling on it, at night as he rolls over and back it gets pulled and stretched, and it finally developed a small crack. The central line is a surgical matter, and the surgeons were covered up all day in surgery, so late in the afternoon the surgeon was able to repair the line rather than do a new central line as had been initially feared. The repair needs 24 hours to bond, so in the meantime they put an I.V. into his right arm so he can get the various drugs (antibiotics, immune suppressants, etc) until tomorrow afternoon when the central line is hopefully available again. So a stressful day for us wondering whether surgery would be necessary, but a peaceful one for Joseph who was unaware of the commotion.

Once again the medical profession came through - the surgeon and nurses treated Joseph late on Christmas Eve with the same patience and care as if he were the first patient on a Monday.

Week Twenty-Four

• 12/25 - Christmas morning - As we pause from the hussle of daily life to celebrate the birth of Christ, we are renewed by Joseph's peaceful love and tolerance, and by the goodwill and care of so many who made this Christmas possible for him. Merry Christmas.

- 5:00 p.m. - a great gift for Joseph tonight: his repaired central line, which needed 24 hours to bond before it could be used, tested well and can take over the work of infusing his various fluids and drugs. So no surgery is necessary, and they will remove the right-arm I.V. His various blood counts are now getting close to bottoming out, so he's at increased risk for infection and discomfort, but so far is still eating reasonably well and seems reasonably comfortable. So while this isn't the Norman Rockwell Christmas that one would plan for their family, it's been a great Christmas, and one that we'll always treasure.

• 12/27 - Joseph's counts are just about at bottom now, as expected from the chemotherapy. Yet he is fever free, is still eating, and is happy. The doctors are very pleased. We'll see what the coming days hold.

• 12/29 - Joseph's counts have now bottomed out. He continues to do well so far - still eating, and no fever.

• 12/30 - Joseph remains in good spirits and so far has managed to avoid complications despite lacking an immunity system as his counts are at zero. Meanwhile, the mood on the floor is somber as Joseph's teenage neighbor in the next room - here since Joseph's admission on December 13 - passed away late this week. So we say extra prayers for his family, and
hug our kids tighter.

Week Twenty-Five

• 1/1 - Happy New Year. Joseph's counts are truly at zero now - no white blood cells, no neutrophils, etc. The doctors say it will likely be 1-3 weeks before cell regeneration starts. In the interim the risks of infection are high, and as regeneration occurs the risks of rejection and its symptoms increase - they have already been treating for that prophylactically since the transplant. Meanwhile Joseph has been running a low-grade fever on and off for a few days, and he seems more lethargic and less comfortable. He has been on lasix as a diuretic to keep the fluid outflow on pace with the inflow (he has 6-10 different I.V. bags of various meds and fluids running on a typical day). But as the New Year begins doctors remain pleased with how he is doing, and we remain cautiously optimistic about the future.

• 1/4 - Joseph's counts remain bottomed out as we await cell regeneration. Meanwhile he has continued to eat and has had only low-grade fevers. Last night he was in pain (not just from the ND debacle) and was very unsettled (not unexpected given the harshness of the chemo that has now once again removed all his hair, including eyebrows - anything that does that cannot be pleasant on other fast-growing cells). One particular drug, Ativan (a benzodiazepin), seems to work best to calm him, as it has this morning. (He's now sleeping). Otherwise things are ok.

• 1/6 - Joseph had a rough 24 hours but seems to have rebounded well. His counts are starting to increase modestly, and his fevers have remained low-grade. He's still eating (although ice cream and poptarts have replaced bananas and yogurt - whatever it takes), and he is relatively content. The biggest challenge has been keeping him dry as they have had to use Lasix periodically to keep his fluid outflow even with his I.V. intake. Otherwise things are relatively quiet,and Joseph has made friends with all the nurses.

• 1/7 - Joseph's counts are continuing to modestly increase, and the doctors are pleased with the progress there. Otherwise beyond some low-grade fevers and what appears to be mild discomfort from mucositis - see http://www.cancersupportivecare.com/mucositis.html for details - Joseph is doing well so far.

Week Twenty-Six

• 1/8 - Joseph starts his fifth week here this stay. He had a rough night last night - lots of discomfort/irritability, then the pain meds caused his respirations and thus oxygen saturation to drop, so oxygen was necessary for a brief period. An early a.m. chest x-ray also revealed some fluid in the lungs, probably simply from the high volume of various I.V. fluids/drugs/nutrition that he is intaking versus the lower outflow (the Cyclosporin - one of the anti-rejection immuno suppressant drugs has a side effect of reducing kidney output). So more Lasix was administered this a.m. - a drug that works very well (5 full diapers in 90 minutes after administration this a.m.). The nurses were extraordinary through all this.

Today he has bounced back with good humor and seems ok. He does not have any fever today, and still has a decent appetite.

• 1/9 - Joseph slept better last night and had a decent day today. Lasix is helping to reduce his fluid retention, making him more comfortable. He was fever free today. His various blood counts were up somewhat, heading in the right direction. So a good day all in all.

• 1/11 - Joseph continues to eat well, and overall is more comfortable. He still has excessive fluid from all the I.V.s and the decreased kidney output, but he is now off of all I.V.s except for basic fluids at night. His various medications are all now being given orally. Lasix continues to do its job pulling fluid out of his body.

• 1/12 - Barring any surprises, doctors tell us that Joseph will be coming home within a few days, possibly even this weekend! This doesn't mean there are no ongoing risks of rejection or relapse, but it does mean that Joseph is responding as they would like to see, and that the anti-rejection medications and any other needs can be administered by us with regular follow-up to the stem cell outpatient clinic at Riley. Most significantly, it will be the first time since July that Joseph is not expected to return for extended inpatient care. So we are ecstactic about getting Joseph home, a bit overwhelmed by euphoria, and busy getting the home clean and germ-free. More details to follow about what happens from here on Joseph's amazing journey.

• 1/13 - JOSEPH COMES HOME TODAY! After six months of treatment, months of inpatient treatment, including four rounds of intense chemotherapy, countless transfusions of platelets and blood, an array of antibiotics, a stem-cell transplant, and extraordinary treatment and care from surgeons, oncologists, doctors, and nurses, Joseph is well enough to continue his recovery in isolation at home. Joseph will continue outpatient treatment for months, initially 3x weekly and decreasing to weekly if all goes well. Joseph remains at risk for rejection and infection, particularly over the next 100 days, so he'll be at home with no visitors and multiple precautions to avoid infection.

As for the long-term course of treatment, AML kids are generally not considered cured until two years post transplant, so we are still early in this journey. Nonetheless there is renewed reason for hope, and all in all things have gone extremely well for Joseph so far.

When Joseph was diagnosed with AML six months ago and we began this website, his brother Tony selected the tagline, "Joseph's Journey To The Cure," no doubt the product of youthful optimism given the stark statistics for AML (40%-45% survival rate generally). Fortunately some of that optimism rubbed off, and after making initial decisions to treat Joseph as aggressively as possible and getting through the first inpatient stay (which was the most challenging for Joseph), optimism has been warranted.

We have learned much through this first phase of the journey. We have learned firsthand that childhood cancer is prevalent and strikes without notice, and that many children are not cured despite great care and the prayers and support of an entire community. We now know that there is an extraordinary group of researchers, doctors, and nurses committed to caring for and trying to cure these children. We have learned once again that people are good, and that friends and strangers alike have supported Joseph through this journey. We know that there are no guarantees for the future, but that we are truly fortunate to have this second chance.

Whatever the future holds, as we look back over these six months, we will do so with fond memories of unconditional support from so many. Although we are certainly anxious to be together at home again as a family, we will miss the good people of Riley, and will always remember the good times with them. Finally, we will recall how Joseph touched their lives in his own unique way.

Going forward, we'll probably update this site weekly barring new developments. Our thanks to all for your support.

Week Twenty-Seven

• 1/17 - Joseph is doing well at home. He had his first clinic follow-up visit on Monday and all was fine. It is wonderful being home.

• 1/20 - Joseph made it through the week fine. His second clinic visit on Thursday was uneventful, with his various blood counts continuing to slowly rise. Notably, one test showed that 93% of the blood cells regenerating are Nino's, which is good. They like to see at least 80% at this stage, and expect the % to increase. We otherwise continue to watch for signs of GVHD (Graft Versus Host Disease), which is one of the primary risks post-transplant. It tends to first appear in skin redness and rashes. So far Joseph is a little pink at times, and Thursday night his feet suddenly looked sunburnt, but it subsided after a few hours and he does not need to be seen again until Monday. Barring any changes we'Bre now on a Monday/Thursday clinic schedule. Meanwhile he continues on his immuno suppressant drugs (to prevent rejection).

By the way, we've never paused to reflect on and pay tribute to the pharmacists, scientists, researchers, pathologists, lab techs, pharmaceutical companies, and countless others who contribute to the more than 25 different drugs that have helped Joseph. There really are miracle drugs.

Week Twenty-Eight

• 1/25 - It has been six months since Joseph's diagnosis. During the last week he seemed uncomfortable and fatigued. The last two days he has seemed happy, though his sleep pattern is out of whack. At today's clinic visit his various blood counts were still on the rise, and the doctors were pleased. He still has recurring swelling in the face and ankles, sometimes in the hands, probably from the immuno suppressant's impact on the kidneys, so he is to take Lasix daily for a week to help remove the fluid. He still has his central line, but if progress continues they will likely remove that (during an outpatient surgery) in a few weeks as it appears he will not need further blood or platelet transfusions. On the homefront things are fine - it seems like months ago that we were in the hospital, even though it has only been 2 weeks.

Week Twenty-Nine

• 1-31 - Joseph's Monday appointment went well. His numbers continue to climb favorably. His skin seems to be doing well (a key indicator of Graft v. Host Disease), with less redness and rash, so if things look good at Thursday's clinic appointment, they will likely schedule him next week to do surgery to remove this central line. Although the line still gets used at each visit to draw blood samples painlessly, it is a potential source of infection, so they prefer to remove it once there is reasonable confidence that blood products and I.V. medications are unlikely. Thereafter blood draws would be in the arm, but Joseph tolerates them pretty well.

Joseph has otherwise been ok, not great, but ok in terms of how he seems to feel. We're still pulling off fluid with Lasix. When he wakes up he looks like a boxer with puffy eyelids and nose. He's fatigued generally, but seems ok. Beyond what he's been through, the various medications that he's still on are likely contributing to his present malaise.

Go Colts!

• 2/10 - Day 50 post-transplant. Day 100 post-transplant is a big milestone for AML leukemia patients undergoing stem-cell transplants. Risks of rejection and relapse will remain thereafter, but statistically diminish significantly after the first 100 days. So today Joseph is halfway there. The doctors are thrilled with how he is doing so far. All the clinical numbers are moving in the right direction, and he has not developed GVH (Graft v. Host Disease). So far the science is working, incomprehensible though it may be.

Tuesday Joseph had his central line removed through a brief surgical procedure, also a big step for him. He handled the procedure well, though he developed a tennis-ball sized bruise over his left chest in the area where the line was - they had to do some extra effort to get the line out because it had been in for 5 months and because they had used a very long tube under his skin to bring the line out on his side so that, while it was in, he would be less likely to pull on it (fortunately he never did pull on it).

Going forward, for now we are on a weekly outpatient clinic cycle to check blood and drug levels, etc. Joseph doesn't mind these sessions at all (usually 2-3 hours or so), and Vivian and I get quiet time together - one of the unique gifts Joseph has given us since he was born and spent his first month in the neonatal unit.

Joseph is fine otherwise, though he has really been fatigued since he has been home. He has been through so much with all the chemotherapy, and it has taken its toll. He is still bald so looks like a wornout chemo boy. His sleep schedule is a mess, with him awake all night most nights and sleeping intermittently through the day. He must have one of his medicines precisely at 10 a.m and 10 p.m. each day, so unfortunately we have to wake him up if he's sleeping then. He also has a nasty area on his right heel that developed from a very large blister that burst; it's a little larger than a silver dollar in size, and is cycling between scabbing, peeling, oozing, etc. Doctors are treating it with oral and topical antibiotics, and so far it is not infected, but it makes it very painful for him to walk, so we avoid that. Fortunately he only weighs 108 pounds so I can still carry him - he hangs on nicely.

If all goes well it will still be months before Joseph can be out and about - although cell regeneration is on track, he is creating a new immune system from start much as a fetus and baby does.

As for us, we're fine. Joseph grounds us on the simple, good things in life. Being home under one roof together is bliss, and it seems like ages ago that we were in the inpatient stages. We're adjusting to the mindset that, although the road ahead is long, winding, and uncertain, we are not just hoping but now planning on Joseph making it. All our lives are fraught with unknown risks and potential peril, but there is good living to be done, and so live we shall.

Week 31

• 2/16 - Joseph had a quiet week at home - no clinic this week because of the snow. His sleep schedule remains erratic, but he seems ok overall. He is starting to grow some hair again. It will be interesting to see how his numbers are next Wednesday after being away for 2 weeks.

Week 32

• 2/22 - Joseph's clinic visit yesterday went fine. His numbers are doing fine, and his blood is now 98% Nino's. They expect this will get to 100%. Going forward he is now on a twice monthly clinic schedule. Today he was able to have a full bath for the first time in months (no central line, no open wound). He enjoyed it, but he has lost so much leg muscle from atrophy while inactive. He is starting some modest physical therapy to try to start getting back in shape.

Separately, Joseph's great-grandmother passed away this week. She was 94, still mobile and as sharp as a 24-year-old, and loved Joseph.

Week 33

• 3/4 Joseph had a decent week after fighting off a cough early in the week. He vomited on Monday but it was from coughing, and he did not get sick thereafter, so we did not have to take him in this week. His next appointment is this coming Wednesday. His eyelashes and eyebrows have grown back, and he's getting some hair back on his head and face. We're trying to get him walking more to start rebuilding muscle, but this will take a while. He is very tight and is hard to stretch, but physical therapy is helping. Although he still seems generally tired, he seems comfortable and relatively content. His appetite is good.

Week 34

• 3/13 Joseph has been good lately. The usual sleep issues, but he seems comfortable and happy. His appetite is good, but he has lost some weight - doctors say that is not unusual after what he has been through and with the medications he is on. He continues every-other-week clinic visits. His hair is growing back well now, and I got clearance to use a razor to shave him last week, so he looks good. Day 100 is three weeks away, so that's the next threshold.

Week 35

• 3/24 Joseph's clinic visit this week was fine. He did not enjoy the blood draw this time. His numbers are about the same, which they say is ok. He still has a way to go as his system regenerates. He has lost several pounds in the last month, which they say is probably from the medications he is still on and the after-effects of all he's been through. So we're loading up the calories (scream, butter, milkshakes, etc). His sleep has been as erratic as usual, but his mood has been pretty good. He almost has a full head of hair now, and has his long eyelashes and bushy eyebrows back. Day 100 approaches, the first checkpoint on the continued path towards recovery. Nothing magical happens at Day 100, but it's of course encouraging to get to that first checkpoint without rejection, relapse, or other complications.

Week 36

• 4/1 - Day 100 - Today we celebrated 100 days post-transplant, the first milestone on the long road to recovery and cure. So far, Joseph has done great - no rejection issues, and no relapse. Doctors will start reducing his medications over the next few months. He still has a long road ahead - isolation at home for many more months as his immune system rebuilds - but this is a day to celebrate for sure.

Week 37

• 4/10 - Joseph seems to be getting stronger, and remains free of infection or illness. He has a full head of soft, black hair. He has been in good spirits despite being stuck at home. His clinic visits are now reduced to monthly. Hopefully they will start reducing his medications through the spring.

Week 38

• 4/16 - Joseph had a good week. He has been very happy and seemingly feels very good. He is getting his strength back, and although he will not yet walk unassisted, he's getting more stable in his gait. His appetite is better, and we're jamming as many calories as possible into him to get the weight back on. (lots of extra-fat ice cream, butter, cream, etc). He appears to be putting a few pounds back on - we'll see at clinic this week.

Week 40

* Joseph is doing very well.   He is now on monthly clinic visits.   At his last visit, the doctors were thrilled with his condition and progress.  He has had no rejection issues, so they are weaning him off of the immuno suppressants  over the month of May.   His various lab results look good - with some blood counts (e.g., platelets) now in normal ranges.    His immune system is still rebuilding, so he remains confined to home for several more months with the same anti-infection protocols, including a prophylactic antibiotic.   The best news yet is that doctors say that if things continue as they are, Joseph can probably return to school in September.      Meanwhile, he has put a few pounds back on (Vivian has him on a heavy diet of butter, whole milk, cream, ice cream, etc). 

On a sad note, we learned today that the 2nd of Joseph's neighbors while he was in the stem cell unit has passed away.  She was a beautiful young girl who had battled leukemia for  several years.  Vivian had gotten to know the family and will attend the funeral in Bloomington on Saturday.    

Week 43

 • May 23

Joseph had a clinic visit recently - it went well.  His blood counts continue in the right direction.  The doctors have ceased his immuno suppressants.    He remains on a few medications into June, and antibiotics through the summer.   His next clinic appointment is not until early July.   Barring a surprise they anticipate he will be able to begin getting out of the house and mixing with people mid-summer, and go to school in September.     They are very pleased with his progress.     From here, absent any setbacks, the next "milestone" is two years post-transplant (January 2009).   At that stage they breathe easier with confidence of low risk of relapse.   We're looking forward to a good summer for Joseph, and a truly happy birthday for him this July. 

Week 45

 •  June 6 (the original Day of Days) - Joseph continues to do well so far.   His next clinic appointment is in July.   He is almost done with all medications other than a long-term anitibiotic.    His new head of hair is darker and curlier than last year at this time.    He is eating fine and seems to be growing.     Joseph has always been blessed with great teachers, and next year looks no different.  We met his new teacher for Zionsville high school last week.    She is very enthusiastic about having Joseph.   Barring any complications, he'll start in late August.    In addition to lots of life skills and community involvement, he'll get to swim at school three days a week.    Life is good.

Week 48

•  June 27 - Joseph continues to do well.    He just finished the last of his daily meds, and is now only on weekend antibiotics.     He goes back to Riley for a clinic visit in early July.    Joseph's hair is getting longer and curlier - looks like some Roman warrior now.      We've moved into our new home, and Joseph seems to like it.    His room has great blinds that keep the room dark in the morning, so he's slept very well here.    Our dog Cookie is now back with us (he had been on sabbatical with the Piccirillos to reduce infection risks for Joseph), and he hangs around Joseph like before.    As we approach one year from diagnosis, it seems like ten years - so much has happened, and so many wonderful people have touched our lives.   

Week 50  - July 6   HAPPY BIRTHDAY TO JOSEPH!   Joseph turned 17 today, and celebrated with a visit to his friends at the Riley Clinic.   His blood work looked good, and he has gained weight.  They are very pleased with his progress.   He is cleared to have more contact with the general public, and no longer needs to wear a mask in public (we're burning it tonight to celebrate).    He'll continue with monthly clinic visits until he his re-immunized in January.  Next month he gets a full work up on immunity levels, plus various cardiac tests just to ensure no damage from various drugs he was on post-transplant.  

So, it's a very happy birthday here.   What a year it has been for Joseph.   God Bless America.

*  Year 2 Begins -   July 21 - It has been one year since Joseph's diagnosis of leukemia.  What a year.    He has fought through multiple rounds of chemotherapy, multiple surgeries, months of inpatient treatment, and countless lab tests and exams.   Thanks to the extraordinary care of the doctors, nurses, and staff of Riley Children's Hospital, and the love, support, and prayers of family and friends, today Joseph has a new lease on life.    He is not out of danger yet, but today he is healthy and happy.   Each day is a gift, and Joseph has reaffirmed that for all of us.     

*   August 1 - We had a brief scare as Joseph suddenly developed a rash, but it is just Shingles, which is a common flare-up of the chickenpox virus in people whose immune system has been compromised.    (technically Shingles is called herpes zoster).   The doctors simply reinstituted his prescription for Acyclovir, which seems to be working well.    Shingles is reportedly very painful, but Joseph seems pretty comfortable.        Otherwise things are fine.

* August 20 - Joseph is back in school!    Joseph started high school this week, and has had a good week.     Medically his recent immune system tests show that he still has a long way to go in regenerating his immune system to a normal level, but his immune system is clinically in good enough shape that - with the use of antibiotics and one other medication - he is able to go to school.    His clinic visits continue monthly, and we hope and expect to see continued improvement in the development of his immune system. 

* October 1 - Joseph has been in school for six weeks and is doing well.  He's getting stronger, is building muscle, and has stayed healthy.  He gets to swim 3x weekly at school, and has good services (including adaptive physical education and physical therapy).  He's teacher and her staff are excellent.      Joseph goes back to Riley this month for another comprehensive review of his systems.  He remains on a prophylactic anitbiotic and one other medication as his immune system regenerates.       Thanks for the continued support and good wishes.

* October 27 - Joseph has had a good month.  School is going well, and his October visit to clinic was fine.  He now weighs 117 pounds, about 20 pounds more than last year at this time (which is good).    His next  big work-up is in December when they will check immune system levels.  

* Nov. 22, Thanksgiving  Day - We have much to be thankful for.   One year ago, Joseph was in the throes of battling leukemia, home briefly before heading back to Riley for the toughest of all his chemotherapy regimens preparing him for stem cell transplant.    Today, one year later, Joseph is nearly one year cancer free, and we are able to enjoy this holiday without the trepidation of suffering for him on the horizon.     So we are eternally thankful for the gift of Joseph and his health.       

Meanwhile, on occasions like today, we remember and give thanks to so many -  family, friends, doctors, nurses, scientists, teachers, neighbors - who have helped Joseph and our family during this extraordinary journey.   May God bless you all.

• 12/22/07 - One Year Anniversary of Stem-Cell Transplant        Today marks one year from Joseph's transplant.   What a year.    This week Joseph was in for a half-day of diagnostic tests.   Preliminary lab work looked good, and he remains healthy.    From here Joseph has further immune system tests in January, and if those look good he will be taken off the two medications he's still on.    Then in March he'll have another work-up and possibly start re-immunization.     

For us, it's just good to be home, all together, this Christmas.  

• 1/20/08   - The holidays at home were great.    Joseph continues to do fine.  He is now walking independently in school with modest help from a cane.      This weekend we are back as a family to Michigan City for the first time since 2006.   When we were here that summer, Joseph was sick but we did not know why.   Now he's feeling good and happy to be in the middle of all the yelling during card games and board games.    He'll go back in this month for blood work, then back again in March for a full check of his immune system. 

• 3/13/08   - RELAPSE - Bad news today for Joseph.   His routine blood work showed abnormal levels (e.g., low platelets, low white blood cell counts), so a bone marrow draw was done that confirmed a relapse of leukemia.  Obviously this is disappointing for all of us.      We'll know more on Monday regarding next treatment options.  For now Joseph is healthy enough to have been released to go back home.   The probable first step is a 5-day round of a different chemotheraphy next week, but we'll know more soon.     The doctors and nurses were great as always.   Keep Joseph in your prayers. 

* 3/13/08  - Joseph was diagnosed today as being in relapse - his leukemia is back after 15 months of being cancer-free post-transplant.  He tolerated the bone-marrow draw and spinal tap well.