December 2008

It will certainly be a Most Merry Christmas, as Ryan is well on his way to returning to life before transplant.  Since the end of the actual transplant period at the beginning of September, weve made twice-weekly trips to Indianapolis to monitor progress and medications; Ashley took over chauffeur duties in October, which no doubt gave them more time to plan their wedding upcoming in October 2009.  Ryan has come through the past few months with an amazing attitude that is simply difficult to put in to all the right words.  And the strength and depth of support hes received from family and friends has been, simply, way beyond mere words.

Just an example of that friendship, love and encouragement can be seen on youtube, a video produced by his co-workers, with a little help from some friends at IU:

http://www.youtube.com/watch?v=_yeN-Xoky7M

The staff at IBMT also honored Ryan with a traditional gift basket of Thanksgiving holiday foods...which also gives you more of a sense of the positive effect he's always had on those around him....
 

He still makes regular checkup visits to IBMT, and his immune system still needs a good amount of time to mature (thats just the long-term nature of a donor transplant), but the doctors continue to gradually eliminate some medications and reduce his steroid dosage and the visible signs (rash) of GVH have disappeared.  GVH is the proverbial double-edged sword, as it indicates that the donor engraftment is taking hold (and fighting any remaining cancer), while also a potentially dangerous ally; physically hes still as Ryan as ever, but his immune system has been donated by another person.and the host and the guest need a significant amount of time to accept and understand each other and work together.  He can get out and about more now, but still has to be cautious around larger groups of people, especially in a contained environmentand of course a bit more so during the cold and flu season.

While it's been a most challenging year, the setbacks have been essentially temporary and the support has been boundless.....we remain truly and amazingly grateful for everyone's thoughts, prayers, and concern....thank you so very, very much....

September 5, 2008 (Day 38)

Both clinic visits this week went very well and the doctors have further reduced the amount of steroids used to keep GVH in check.  Counts are looking good, and Ryan is getting back a bit more energy.  His hair has also starting growing back, as well.  He does have a bit of they refer to as acne rash which is more of a cosmetic concern, but it is clearing up with a topical ointment.

He now has the OK for limited contact in public, such as at a small restaurant.  He still must remain relatively cautious about time spent and numbers of people, however, until about Day 60.  He had been getting out for some walking, but the recent heat wave and advisories in Cincinnati curtailed that a bithoping that the cooler weather will make exercise a bit easier to get.

And as things all turned out, he was able to move back home just in time for Ashleys birthday!  She had decorated their condo for his return as well, and then they settled in with time to read all those great cards and letters youve sent to them.

August 28, 2008 (Day 30)

Great newsthe doctors have given Ryan the OK to head home.  His next visits to the clinic will be next Tuesday and Friday, as he transitions to twice-weekly appointments.  The doctors say theyre pleased with all his numbers or counts, as they are where they should be at this point.  Hes back to a limited steroid dosage, along with other medications primarily intended to fend off any infections until approximately Day 100.  Hell also get an immune booster (IVIG) once each week at the clinic.

They also did a routine bone marrow test today, to ensure that the donor cells are growing as they shouldalthough the counts and experience thus far certainly indicate thats happening. 

We knew, but now know with so much more certainty, that a donor transplant is an incredibly amazing, changeable, and challenging process.  Weve been here in Indianapolis a bit longer than we probably expected, but then we likely underestimated the changeable portion.  Please consider learning more about blood marrow transplants and blood cancersat

http://www.marrow.org/ and http://www.leukemia-lymphoma.org/hm_lls .

The major upcoming nationwide fundraiser is Light the Night, which weve learned about from the IBMT (Indiana Blood and Marrow Center) staff at St. Francis.theyll have a big team together for the Indianapolis version of the event in October.  Critical reason for Lights being is the over $40-million that has been distributed to donor patients in need of assistance, plus $425-million for research and new treatments. 

Of course, well continue to keep these pages updated, as Ryan moves toward Day 100 and successful completion of treatment.  We cant thank the IBMT/St. Francis staff enough, from the doctors and nurses through to the parking lot attendants and everyone in between.  And so many thanks to all of Rys family and friends whose cards, letters and gifts have considered shortened the past 5-6 weeks..hell see you all soon!

August 26, 2008 (Day 28)

The steroid dosage has been cut in half again, and Ry is in and out of the clinic in about half the time as well.  Liver enzyme counts are way down, and white counts are way upeach a great sign.  He should be able to move to oral (pill) steroids next week, including a change to Prednisone.  Theyve also cut back on the daily blood sampling, moving to taking it every 2-3 days.

The blood cultures taken over the weekend also were clear, and other important measurements such as electrolytes and potassium are where they should be.  Rys also back to taking daily walks, and his appetite remains very good.  Hes sampling various liquids right now, as his drink taste buds slowly but surely become more normal.

August 24, 2008 (Day 26)

Ryan is back at the apartment, after a short stay in the hospital to monitor how the adjustments in treatment have affected him.  All is well, and his liver enzyme counts continue to decrease and the steroid dosage is being gradually reduced.  He also received some fluid via IV because the steroids apparently had affected his taste of various things to drink.  His appetite is strong, however, so no negatives on that side of things. 

His white and red blood cell counts remain strong, and hell be back to only once daily visits to the clinic this week.  Again, the decision to transition to twice-weekly visits (along with being able to go home) will be made within the next week or so. 

It still feels very much like summer here, but the Olympics and the Little League World Series are about over, and high school football is in its first weekguess that means time is going by quickly, and hell be back in Cincinnati soon.  And thanks again for all the cards, goodies, and morekeeping things positive and in perspective is a major part of the transplant process, and your thoughts, prayers and well wishes are so much appreciated!

August 22, 2008 (Day 24)

The doctors are convinced that Ryan has experienced GVH, given a skin rash and slightly higher live enzyme levels.  The rash is gone, and the levels are going downas a result of an adjusted steroid dosage.  So hes fine, but well likely be here a bit longer than we might have expected.  Again, each donor transplant is unique, and how things proceed and how GVH or infections happen and are handled are simply not subject to hard and fast rules.general guidelines, yes, but very, very flexible ones.

The decision to have him transition to twice-weekly visits to the clinic (commuting from home) will likely be made within the next two weeks.later rather than sooner, probably, in order to ensure that the GVH has been handled.

August 19, 2008 (Day 21)

Some ups and downs the past couple of days.yesterday they noted an increase in enzyme levels in the liver, which can indicate GVH within the organ (the liver and lungs being sites where GVH often is seenand more seriously so than with a skin rash).  While his Bilirubin count was normal (the main liver count measured via daily blood tests), the enzyme levels can be early indicators of GVH.  In any case, standard procedure is to act quickly, and so the steroid levels have been temporarily been increased.  Ryan is getting Solumedrol twice per day, morning and afternoon.  And because of the adjusted steroid dosage, one of the oral anti-infection drugs has been temporarily replaced by a higher-potency one.  The latter drug has to be given via IV over a few hours, but only twice per week.

The very good news this morning is that the enzyme levels were down a good bit.  While the steroid dosage wont be cut immediately, its a great sign that it can happen sooner rather than later.  Concern about long-term affects of steroids is no small thing, of course.

Ryan was a bit light-headed this morning, but thats most likely explained by the higher level of steroids and was very temporary.  Pulse, blood pressure and heart rate remain excellent.  Ryan found another side effect is that various liquids dont taste as good as they should.  He is also sleeping and eating wellfood tastes have not been affected.

What all of this reminds us is that the course of any donor transplant is simply impossible to predict, except that it is inherently (and frustratingly) unpredictable.  But the strength of his body and mind make a huge difference in the eventual response and recovery from these bumps no matter how small or large they might be.

August 17, 2008 (Day 19)

Ryan is feeling good, and his strong energy level and appetite have returned.  He went to sleep late last night, due primarily to the steroid treatmentbut he did take a fairly long nap in the afternoon.  The rash has subsided significantly, now limited and more purplish than red (it should move from red to pink to purple to brown as it disappears). 

White and red cell counts are still well above where they might have been expected at this point.  The steroid shots are certainly much responsible for his very high WBC counts recorded today and yesterday.  His platelet count is also very high, but if any of this is a result of GVH that number will go down, and continue to go so for a couple of months. 

But as Dr. Akard reminds us, this is all OK. most donor transplant patients would still be waiting for those counts to be even close to being on the upswing during the third week after.

We dont expect to know until tomorrow whether this episode was a result of true GVH, when the skin/rash biopsy results are available.  The doctors also suggest that it is also likely to be a case of rapid engraftment syndrome, sometimes called cytokine stormessentially an overreaction by immune system cells, prompted in this case by the very quick growth (or engraftment) of the donor cells.  In a simple sense, Cytokines enable immune cells.  Some doctors will also refer to this as an immune phenomenon or bone marrow recovery reaction.

Another possible cause is drug rash but thats the least likely of the three.

Ryans steroid dose was reduced by half today.  Whether the cause is GVH, cytokine, or rash, steroid treatment is the standard first course of treatment.  It is inflammation, and the two steroids involved here are Solumedrol and Prednisone which are anti-inflammatory. 

But patients need to be weaned off of steroids as quickly as possibleside effects include redistribution of body fat/muscle weakness (most noticeably in triceps and quads), blood pressure and sugar level increases, and infections (especially fungal).  The staff has assured us that they are extremely cautious about long-term steroid treatment, although dealing with GVH will always be the most important factor. 

Over the next few months, Ry can fairly expect to have both up and down daysand of course those in-between.  But the doctors note that they wont physically be a function of his blood count levels.  We have to keep in mind that special 100-day (post-transplant) marker, which will be here sooner rather than later.  He also is unlikely to see any significant physical impacts of decreasing platelet levels (which are quite high right now).  In other words, hell still be Ryan and ready to make things happen!

Please consider going to the National Marrow Donor Program (http://www.marrow.org/) for details about becoming a donor...or pass the site address along to someone else.  
 

Thanks again so very much for all your help and encouragement.it means so very much to all of us as we again beat this cancer...The Parkers

August 15, 2008

After being released from inpatient status yesterday afternoon, Ryan had a good evening last night.  But this morning he wound up with what the doctors believe are first signs of graft versus host (GVH)...he had a good amount of skin rash, his throat more sorer, and temp up again. A little GVH is good (it indicates that donor cells are active and working), but it has to be controlled with steroids.  The majority of donor transplant patients experience GVH, although the amount also is relative to the closeness of the tissue typing between patient and donorRys donor was a strong match (simply termed an 8 out of 10), but certainly not exact.  The difference in typing also suggests the likelihood of this being GVH.

They also took a skin sample for a biopsy...to see if it is indeed GVH (which they say appears very distinct under a microscope).  The doctors say that the severity of any GVH depends upon the response (to the steroid treatment).  As of this evening, it appears that Ryan is responding very positively to the treatment.hes feeling much better, and has eaten a good dinner.

The steroid injection normally works fairly quickly to counteract things...he received a significantly higher dose of it than he'd gotten before the transplant. The steroid (Solumedrol) might also make him feel jittery, even on edge, as if he had too much caffeine, they say, and might also make sleeping more difficult.

His white cell counts are up very significantly today, another positive sign.  In any case, precautions regarding crowds and diet remain until the 60-day marker.

We probably won't have biopsy results this weekend, but will see Dr. Akard tomorrow (both Drs. Akard and Thompson checked Ryan today).

Ry wants to thank everyone for the thoughtful gifts, cards, and well wishes and prayers hes been receiving on a daily basis.its so wonderful to see such an incredible support system behind him from family and friends..

August 14, 2008 (Day 16)

Ryans back at the apartment, with his white count well up to 1.9.  Hes still experiencing a bit of a sore throat, but the WBC increase is expected to take care of that.  Appetites still soft, certainly compared to last week, but getting better; the sodium chloride that he received via IV along with antibiotics probably accounted for the fact that foods simply didnt taste too good.

This week appears to have been just a case of the Day 10 Syndrome for him, but he still has to maintain caution regarding diet and crowds, certainly until he reaches the 60-day marker.  The doctors say hes still probably a week ahead of schedule, despite the past couple of days as an inpatient.  His weight dropped slightly while hospitalized, but thats not significant.  The highest his temperature reached was 102, which the doctors didnt consider worrisomethe extra time spent as an inpatient remained precautionary.

The doctors explain that the changes this week were most likely due to his white blood cell count stuttering in comparison to the quick rise in his platelet count.its quite rare for platelets to increase as quickly as did his in a donor transplant.  But the relative lag in his white count is also not the norm.but todays big WBC increase appears to have set things into better balance.

Tomorrows clinic visit should provide a much clearer picture of what to expect in the next week, especially regarding whether he can head back home and transition to twice-weekly visits to see the doctors.

August 12, 2008 (Day 14)

Ryans had to monitor his temperature for some time now, with the concern level at 101. Today it was at 100.4 when he went for his clinic visit, so the doctors felt it best to keep him in the hospital overnight as a precaution.  He did look a little flushed, with slight shortness of breathbut nothing terribly serious.  They did give him IV antibiotics, and   they will also do blood cultures.

Its most likely that the fever is a result of the new stem cells growing and making factors that over stimulate the immune system, and its also important to remember that he was doing unnaturally well last week, as the doctors pointed out.  They think its far less likely that its a result of an infection, or GVH.  The good news is that his white blood cell (WBC) count is up to .6.

He did have a slight sore throat during the weekend, when his platelet count rose again significantly.showing that the donor cells are now in charge.  Major throat issues would normally surface by this point in a donor transplant.  He could experience some bone pain as the WBC increases.  Unlike an autologous transplant, the doctors prefer to not use Neupogen to stimulate cell growth, as the drug can alter behavior of cells and possibly cause more GVH and lung problems.

August 8, 2008 (Day 10)

Ryans energy and appetite continue to be strong, and hes still taking evening walks.  His weight is still just over 200, about where he started.  His platelet count is up significantly today, which indicates that hes now producing his own.  White blood cell count (WBC) is expected to begin rising within the next 1-2 daysat that point, the risk of any infections begins to drop, although the possibility of GVH stays with donor transplant patients through the 100-day marker. 

And were now at or past the point of what is known as the "Day 10 Syndrome" wherein patients are most likely to experience complications or serious side effects from the transplant itself.

Once his WBC goes up past 1,000 hell no longer need the current daily clinic visits and tests.  When WBC hits 5,000 he can go home, with clinic visits to then be twice per week.  He will need to visit the clinic at least once per month for the year after the transplant.  And on average, donor transplant patients are advised to expect to be admitted to the hospital at least once during the first 100 days post-transplant.  
 

Cells from a peripheral (blood) stem cell donor, certainly in this case, often provide a quick boost or busrt of production.as the cells tend to be more mature (as opposed to an autologous transplant).  The time it takes to transport donor cells to the clinic also has an effectso it appears that his donor probably doesnt live too far away (remember, the marrow bank uses transplant donors from various countries).  Because of this initial surge its possible that his platelets could later fall a bit, though not to a level that would be any problem.transplant physicians refer to this as the second wave.  In any case, donor transplant patients reach full recovery at a much slower pace than those experiencing autologous transplants. 

August 6, 2008 (day 8)

Clinic visits have been fairly brief and simple for the past week and a half, but today Ryan is receiving blood and platelet transfusions.  His hemoglobin count had dropped to 8, which is the minimum marker, and platelets count was 12.  Although the platelets official marker is 10, the staff decided it best to give them as well because his counts are dropping slowly (and the doctors say its always best for counts to fall slowly)  Ry did receive blood twice during his autologous transplant.

The doctors anticipate that his own platelet production to begin to rise by the end of this week.

His weight is actually up a bit, to 201he has been eating well, including one of his favorite bakery-bought white cakes.  His chest xray yesterday was normal, and his energy level continues good and steady. 

Were still sort of surprised at how well all has gone, although the staff reminds us that the 100 Days marker remains as the real determining point of side effects and particularly GVH (graft versus host).  At the same time, Ry should be able to better handle any GVH or complications because hes in such good shape and his transplant has gone so well.  Good physical condition allows a patient to better tolerate low red blood cell counts.

He did have some mouth and throat soreness last transplant, but none thus far this time.  The doctors say if that is to happen, its most likely to occur soon. 

To maintain his Cyclosporine levels, hes had to increase his dosage a bithell need to take this drug for a while, as it helps prevent rejection of the donor cells.

Thanks to everyone whos sent good wishes, thoughts, prayers, cards, and messageshell see everyone soon!

August 2, 2008

Its Day 4 of the transplant, and all continues to go well for Ryan.  His White Blood Cell (WBC) count did drop below 1,000 today (.7), as expected, and he will begin wearing a mask going to and from the hospital (inside the hospital being the most likely place to pick up some sort of infection).  Yesterdays WBC was a still relatively high 1.8not common, but also a good thing.

We can also expect his energy level to now drop off, although hes still in good shape thereeveryone was commenting yesterday that hes gone through the first couple of weeks as good as can be, and probably better.  Most patients would be expected to feel much weaker, and have less appetite at this point.  But as the doctors pointed out, the true measure of things comes when the WBC drops.  And of course a donor transplant is just different from an autologous one.

We wont be going out to eat again for awhile, but we did take a good trip to the grocery store yesterday.  His appetite remains strong, and were stocked for the time being.  Last night he cooked tacosprobably encouraged by all the cooking shows he gets to watch! 

He can continue to walk, and is encouraged to do so.  The mask is necessarily needed, although the most important thing is to avoid walking during grass-cutting hoursas that stirs up the fungi.  He also is now much more sensitive to sunlight, so any walks need to be taken in the early morning or evening hours.  We also have to more carefully monitor any indication of fever now that his WBC is down (especially above 101 degrees).

His hemoglobin count also dropped a fair amount today, indicating hell need a platelet transfusion Monday or Tuesday.  In a donor transplant, platelet counts usually rise before WBCthe opposite of an autologous transplant.  Rys platelets should start to rise around day 9-10; prior to then, he might need platelets a couple of times.  Dr. Akard noted that a deficiency in hemoglobin feels not unlike the effects of high altitude.

Any remaining chemo drugs in his system are now wiping out existing bone marrow and making room to new stem cells to grow.  Dr. Akard is thinking that Ry probably wont need Neupogen shots this time (to encourage cell growth).although its still too early for predictions.  He has had no mouth soreness or dryness, which is also a common side effect.  His weight is down slightly, from about 202 to 198. 

July 30, 2008

Last nights transplant went very well, outside of a bit of what the doctors consider delayed nausea for Ryanbut the Ativan medication seemed to have taken care of things.  Because the donors blood type is different from Rys, reactions (especially fever) are expected; in this case they were relatively minimal.  As the transplanted cells first congregate in the lungs, there was a small amount of congestion, but nothing significant.  He also received a bit of Tylenol to forestall fever.

The process took about two hours, a bit longer than originally expected because the donor contributed three times the minimum amount of cells. 

At todays clinic appointment, Dr. Akard said that the nausea was most likely caused by a residual amount of Melphalan (final chemo drug).  His white blood cell count (4,400) was about the same as yesterday, although its expected to drop to around 1,000 by the weekend.  His blood platelets level is also likely to fall about 25-50% per day. 

Dr. Akard commented that the donor product was very good, and provided an excellent number of stem cells.suggesting that they should grow just fine after the transplant.

Ry did take a good walk this morninghe said his energy was back up a bit, although his appetite was still a bit dampened.  But he did want to go out to lunch at Chilis, and had already eaten a bagel, ice cream, plus cheese and crackers earlier in the morning.  Im certain that hes looking, feeling and eating better than I recall during his autologous transplant.  Were also not yet at the stage where he has to wear a face mask and avoid crowd contact, although we do have to watch carefully for fever (above 101 degrees), and bleeding (especially in the nose).

July 29, 2008

Ryans transplant is now scheduled for early this eveningwell be there and ready to go at 5:30pm.  We learned this morning that it took only one day to harvest the donor cells, which is a very good signsuggests that the donor is in great health (when Ryan had his autologous transplant, it took only one session to harvest his own marrow cells). 

The transplant itself will last about an hour.  Theyll first run some tests on the cells/blood, including putting it into a Petri dish to see how quickly the stem cells are likely to grow.  The marrow comes in via special courier; oftentimes, its a volunteer member of the St. Francis staff, as Nurse Ann explained to us. 

Hes also begun taking another medication, Cyclosporine, twice per day.  This is intended to suppress Graft Versus Hostby preventing his T cells from attacking the donor cells; his length of time on this drug will just depend on overall reactions after the transplant.  The primary thing the doctors will be looking for post-transplant is to growth of mature lymphocytes (which fight viral infections).  Theyll also be looking for increases in neutrophyls, which fight bacterial infections.

Blood count testing actually measures levels that are in essence a few days oldmeaning, well after the given cells were actually produced in the marrow.

While Ry has begun feeling less energetic and hungry (run over as Dr. Akard put it), his counts are still good and doing what theyre supposed to do according to Nurse Lisa this morning.  Hes feeling no worse than yesterday, and we did make to IHOP for breakfast after this mornings consultation and blood work.  Although is appetite isnt what it was last week, hes not feeling queasy and hasnt had to take any anti-nausea medication.  He did sleep through a good amount of yesterday, but thats to be expected.  There will be some lingering affects of the last two chemo drugs.  Hes also getting chest x-rays every few days, which is standard procedure. 

After this donor transplant, it will take longer for his white blood cell count to increase and his energy and appetite to returnlonger than it took for the autologous transplant, probably in the 14-20 days range.  The doctors continue to encourage him to stay as active as he can, as he needs both rest and activity to help speed recovery.

Ry took a good walk Sunday, but was a bit on the run over side yesterday...it turned out to truly be the day of rest the doctors had been talking about.  The day of rest is also intended to help clear most of the chemo drugs from his system (residual chemo drugs would delay growth of new cells).  He is still eating well, though in smaller portions and more often.  They say his full sense of taste will take about 21 or so days to return.  For the short haul, he has to avoid foods such as fruits and vegetables that need to be peeled.as their skins are likely to contain high amounts of bacteria (although canned and frozen varieties are OK).

Rys begun receiving some mailed cards and letters.he wants to express his thanks again to the many folks who are backing him through all of this.  You can be certainly assured that it makes it much easier to weather a very challenging time, especially during this week of the transplant.