October 15, 2008
A lot has happened since the last update. Prak had some problems with vision in his right eye. After running many tests, the docs came to the conclusion that the leukemia was in the cerebrospinal fluid. Around the same time, the leukemia was back in the blood and bone marrow. So, his platelet count plummeted and they could not inject chemo into the CSF. Instead, they did radiation on the cranium and spine and this Monday was the last treatment. He also had another chemo, this time with a new drug called Mylotarg and that got done this monday. Meanwhile, Prak started running a temp and had to be admitted in the hospital. A chest x-ray showed fluid in the lungs. The docs feel that low platelet counts caused bleeding in the lungs.  The chest x- ray yesterday shows an improvement in the lungs. Meanwhile, due to the low platelet count, Prak has bleeding in the gut and although it has not become worse, it is quite a lot. The docs are doing all they can to get his platelet count up, but that has not happened as yet. Since Prak has had so many transfusions, his body is making antibodies to the platelets. Whenever he gets a transfusion, the antibodies chew up those platelets. So the docs are trying to get genetically matched  platelets to  overcome this problem. We are hopeful that something will work out and Prak will get better soon.  Please keep the positive thoughts and good wishes coming our way, we really need them. -- Sujju

September 11, 2008
Things have gone reasonably well here over the last couple of weeks. On Tuesday, September 2, I went in for a bone marrow biopsy AND a yucky inhaled medicine session on the same day - sort of an unpleasantness biathlon, if you are still in Olympics hangover. The only redeeming aspect of this, other than the medical benefit, is that after you are done, the rest of the day just feels so great by comparison. In addition to the bone marrow biopsy, this time they also drew peripheral blood from the arm so that they could run some of the the same tests on the blood that they run with the bone marrow aspirate. If the results from the blood and the aspirate are close, then some of the monitoring in the future can be done just by a blood test instead of a bone marrow biopsy, so fewer biopsies will be needed.

The preliminary results from the bone marrow biopsy indicate that the marrow is still clear and the proportion of donor cells is 99.4%, which is good. No chemo is planned for the moment because there is no evidence of leukemic cells, and the percentage of donor cells is high. The plan now is to continue close monitoring and only do chemos as and when needed. Of course, what we are hoping for is that it will never be needed ...... :)))). To the delight of my pelvis (and the chagrin of my arm), the results from the peripheral blood and the bone marrow aspirate correlated very well, so it appears that the idea of monitoring via the peripheral blood is feasible in my case :)).

The GVHD (graft versus host disease) soap opera still continues. In addition to the earlier manifestation in the GI tract, I developed acute GVHD in the liver. The doctors immediately put me back on prednisone to deal with this, and the good news is that it seems ro be working. I must say that this time around, I really felt that we got our money's worth out of the prednisone. First of all, it did serve its primary purpose by getting the GVHD in the liver under control. Secondly, by preventing my immune system from squishing my own platelets, it helped my platelet count to come up from 2 (yes, the number of fingers in the "peace" hand symbol) to 74. This is still less than 50% of what it should be (150), but it is a 3700% improvement over 2. Third, the prednisone helped to calm the residual inflammation and pain in my GI tract after the intestinal infection that put me on the hospital in July. Finally, the predisone also provided relief from the pain of bursitis that had been nagging me since my last hospital say. It is tempting to think of prednisone as a miracle drug, except that its side effects are as wide-ranging and as strong as its main effects. For this reason, the doctors are always in a hurry to get you off prednisone as soon as possible. We have already started to taper off the dosage, despite the multivarious benefits listed above.

In general, things are going well for the moment. My counts and strength are slooooooooowly coming up, while my weight remains quite stable. My appetite has improved noticeably and, after a long time, food is actually tasting normal again. If all continues to go well, we are hoping to shift base back to Manhattan at the end of September, and come to KC once or twice a week for check ups. We are also hoping to post updates a little more regularly than we have been doing since the relapse - maybe once in two weeks or so. Wish us luck! -- Prakash.

July 30, 2008
In the last update I had mentioned that Prak was still having fever. Well he got better and was sent home after a few days. Then, on July 12th, he was admitted in the hospital again, with high fever. This time they found the organisms causing the infection and started treatment right away. Prak had developed Typhlitis, not uncommon for someone who has had chemo and low white cell counts for a while. A part of his colon was inflamed and started bleeding after a couple of days. Since Prak's platelet count was very low, they could not do any invasive procedures to stop the bleeding. So he was on complete bowel rest and was fed through the IV. The doc also gave him a drug called AMICAR to stop the bleeding and a lot of transfusions to offset the blood loss. He started responding to the treatment and is getting better. The bleeding has slowed down considerably. Prak is also getting Neupogen shots to help his body make white blood cells (neutrophils in particular), which will help in the healing of the gut. He has been taken off the IV feeding and is now on a liquid diet. Once the bleeding stops completely, he will be allowed to eat solids. With everything that was going on, the chemo has been put on the back burner. His last biopsy showed that he did not have any blasts, but his bone marrow was also not doing a whole lot at that point. Once Prak and his counts recover, they will do another bone marrow biopsy to see what is going on there and then decide on the next course of action. Meanwhile he is focusing on getting better and remains optimistic. Please keep those positive vibes coming his way. --Sujju

June 09, 2008
A lot has happened since the last update. We went for a regular check up on the 27th of last month, when a blood test revealed that Prak had had a relapse. The docs started treatment right away and told us that we have to be in the Kansas City area for a minimum of 2 months. Initially, we stayed at the Hope Lodge and went to the clinic for the treatment. Last week, Prak developed a fever and had to be admitted to the hospital. He still gets spikes of high fever and the source is yet to be identified. Meanwhile, he is on broad spectrum antibiotics and anti fungal medication. Hopefully his fever will either subside on its own or they will find the source and treat accordingly. Once his fever is under control, they will let us go home (we have rented another apartment in Kansas City so Azad can stay with us). The 10 day chemo is over and they will wait another week before doing another biopsy. Based on the results, further course of action will be determined. Please keep the good wishes and positive vibes coming, we really need them. --Sujju

May 14, 2008.
Two and a half pieces of good news! First, the results of the six month post-transplant bone marrow biopsy are in and the bone marrow is still clear. We are obviously very happy and very relieved at this result. The other tests that were done as part of the six month workup - pulmonary function test, various blood tests - have also come back with satisfactory results. In the latest blood test, all the counts are within the normal range. The next scheduled bone marrow biopsy is at one year post-transplant, which will be Nov. 1st. We hope we can maintain status quo until Nov. 1 and beyond. Don't uncross those fingers just as yet!

The second piece of good news is that we are now back home in Manhattan, Kansas. The doctors gave us final approval to move out of the Kansas City area, and on May 4th. we made the move back home. It is really great to be back home after an absence of almost one year (we left Manhattan on May 18, 2007), even though we now have to drive two hours instead of 30 mins for the check-ups. Bad time for gasoline prices to shoot up. Nevertheless, it certainly does good for the mind and body to be home again. From my window here, I can see the tall smokestack that is opposite my office, a half mile away. It is a nice to be able to see your office when you don't have to go to work! The plan now is for me return to work full time in mid-August. I never thought I would ever say this in my life, but I am really looking forward to it. Anything that brings me closer to the normalcy that I knew before my diagnosis is deeply reassuring - even going back to work. In this context, you can imagine what it does for me to be back home after a year.

With all this good news, it would be fantastic if I could report that the graft-versus-host disease (GVHD) has finally gone away, but unfortunately, such is not the case. The GVHD in my GI tract is still going strong, though not as strong as it was before. In addition, I now have another manifestation of GVHD in the form of mouth sores. This new occurrence of GVHD is called chronic GVHD and is characterized by its late onset (after 100 days post-transplant), whereas the GI tract GVHD is classified as acute GVHD with onset before 100 days post-transplant. So far, the mouth sores have not been very painful. They are more of a minor nuisance than anything else, and a fairly accurate indicator of the spiciness of the food I eat. In a way, it acts as a safety system: if the food is mild enough not to irritate my mouth sores, then it is mild enough to be handled by my GI tract. At the moment, the doctors are not treating the mouth sores, but they are keeping them under observation to make sure they do not flare up more. The redeeming aspect here is that studies have shown that patients who get chronic GVHD have a lower rate of relapse than patients who do not. So the fact that I have developed chronic GVHD is at worst a mixed blessing, making it the final half piece of good news for this update. Overall, it has been a good couple of weeks. With your good wishes, we hope to have many more. -Prakash

April 21, 2008
Well, I guess time flies when you are procrastinating over your taxes. It is hard for me to believe that it has been over a month since the last update. I am sorry for the long break, and I will try to be more prompt hereafter. Fortunately, things have remained on a fairly even keel in the interim. I am continuing to improve, although the pace of improvement is somewhat leisurely, as expected. All my counts have remained steady in the normal range, and all body chemistry indicators are also satisfactory. So far, so good!

The BIG, GOOD NEWS here is that the doctors have given us tentative approval to move back to Manhattan! If all goes well, we are planning to move back home on May 4th. As you can imagine, we are very excited at the prospect of returning home, but we well recall that there was a time when we thought we would be home in mid-February, so we are trying not to get too excited just as yet. If we do get back on May 4th., it will be almost a year after I last left Manhattan on May 18th. 2007 on what we thought was going to be a 2 month trip. The 10 month delay in the return trip almost makes American Airlines look good by comparison. Yes, it is definitely time to go home ........

We are also on the threshold of another major marker in the recovery process, viz. the six-month (or, more precisely, the 180 day) milestone. Day 180 post-transplant comes up on April 29. Of course, the medical profession's idea of a celebration for these milestones is to conduct a battery of tests. We get started this Thursday with a test of pulmonary function to make sure that the lungs are still functioning at normal capacity. There will also be a series of blood tests next week to assess various body chemistry and immunity factors. The highlight of the 180-day festivities, as you may have guessed, is a bone marrow biopsy that is scheduled for Monday, April 28. This will be my ninth bone marrow biopsy in nine months. I think my pelvis is starting to look like Swiss cheese! (Just kidding - the techniques for doing a bone marrow biopsy have improved so much that it is very minimally invasive and not at all painful, which is really fortunate when you are averaging one a month). Anyway, the results of all the tests will be available to us on May 12. As always, crossed fingers, toes, and anything else you can cross! After this, if all goes well, the next milestone will be at one year post-transplant, which is October 31. I wonder what celebrations the doctors will plan for that event - the party animals!

Much as we are trying to contain our excitement, it is hard not to keep thinking that in less than 2 weeks, we could actually be home. Let us really, really, really hope it works out this time!

Prakash.

March 08, 2008
I had two more routine checkups this past week and things are generally proceeding as expected. The blood counts are all normal or close to normal, and the CMV and EBV viruses are under control, although they are both being monitored carefully to see if they become active again. I am still on the 3-steroid regimen, but the Prednisone is being tapered off and may be stopped within a couple of weeks. If there are no adverse effects to stopping the Prednisone, the doctors will then consider tapering off the other steroids also. That should help stabilize my body chemistry and immune system. This in turn will allow the doctors to spread out the routine check-ups even more, which is necessary if we are to shift base to Manhattan. We will probably need to be at no more than one checkup every two weeks before they will allow us to leave from the KC area. Right now, it appears that it will be sometime in April before we get to that stage.

That brings us to our dominant topic of the last several weeks, viz., my Graft-Versus-Host Disease (GVHD). The update on this front is the same as it has been for the several weeks, viz., things are slooooooowly getting better. Overall, the pain, discomfort, and diarrhea have decreased but have not been completely eliminated; however, things are still improving on all these fronts, so we just have to stick it out a little longer. The other problem is my weight loss due to poor absorption of nutrients in the GI tract. The good news on this front is that my weight has finally stopped dropping and is now holding steady at 40 pounds below my usual weight (and 65 pounds below my peak weight during my bloated stage when I had VEOD a couple of months ago).

So the task at hand now is to regain the weight that has been lost (just the 40 pounds, of course, not the 65 pounds). To this end, we are now officially engaged in the "Fatten Up Prakash" campaign. The idea is to go to a higher calorie diet (about 2500 calories per day) so that despite the weak absorption of nutrients in the GI tract, there is still enough taken in to increase my weight. It is hoped that this will transform me from my current scrawny, plucked chicken look to something along the lines of the naively contented pigs that end up on the covers of food magazines with apples in their mouths. Sujju has launched herself with her customary zeal and enthusiasm into her new role as the anti-Jenny Craig, and has been busy inventing new ways to make tasty meals out of high calorie foods like couscous, bulgur wheat, whipping cream, etc. Of course, after things get back to normal, I will probably be back to trying to lose weight to stay in shape.

The next scheduled checkup is on Monday, March 10. Let us continue to hope for progress, slow and steady though it may be! Prakash.

Feb 24, 2008 4:00 pm
We finally have the results from the bone marrow biopsy that was done right after Day 100, and the news is good! The bone marrow is clear, and the marrow cells are 100% donor cells. This shows good engraftment, and having all donor cells instead of my original cells means that the risk of having retained some leukemia cells is reduced. The goal now, of course, is to keep things this way in the future. The next scheduled bone marrow biopsy will be done at Day 180 post-transplant, which is sometime in late April. Our fingers are crossed already!

On other fronts, the GVHD (Graft Versus Host Disease) is still proving to be more tenacious and persistent than we had hoped for. The doctors say that it has already lasted longer than most typical cases, and their voices drop to a reverential whisper of grudging awe whenever they talk about my case of GVHD. Nevertheless, the doctors and we are hopeful that things will turn around. The turnaround may not be quick, but we feel we are getting to the point of slow and steady improvement. I am still being treated with three different steroids. I think I have taken enough steroids in the last 6 weeks to be in violation of the steroid use policy in every sport, even sports like like Pro-Wrestling that seemingly have no rules. I am probably not doing too well with respect to narcotics use policies either, since one of the medications that I am on is called - I kid you not - "Tincture of Opium." Anyway, the good news on the GVHD front is that things are actually improving, though the improvement is very slow. Compared to 6 weeks ago, I actually feel better and the diarrhea is less severe than before. My weight has also stabilized, after having dropped all the way to the weight I used to be as a graduate student. As far the viruses are concerned, the EBV is still active, but at a low level and the doctor's are keeping this under observation in the hope that it will fix itself. After some weeks of treatment with IV medication, the CMV virus is back under control. Let us hope it stays that way.

Given the difficulties in the last few weeks with the GVHD, the EBV virus, the CMV virus, etc., I guess it is fair to say that I have crawled rather than cruised past the 100 Day milestone. A few months ago, I would have found that thought discouraging, but not now. I have since come to realize that in recovery from stem cell transplant, there are no style points. The only thing that matters is to keep making steady, sustained progress towards the goal of total recovery, no matter what and no matter how long it takes. Right now, the GVHD is sloooooooowwwwwwwwllly getting better, as are the EBV and CMV infections. That, slow as it may be, is progress, and to me that is hope, not discouragement.

Onward to the six-month (Day 180) milestone! Prakash.

Feb 08, 2008
Today is day 99 post transplant. Prak is feeling a wee bit better and is trying to eat a little more than he has been. At the check up yesterday his weight was about the same and so our goal for this weekend is to try and increase his solid food intake. :) To mark crossing the century target (post transplant), Prak will undergo a bone marrow biopsy on Monday. The results will be known in a week to ten days. The steroids that Prak is on have to be tapered off and when all this is done and he is doing well, only then will the docs discuss going home. Anyway, one day at a time is the best way to deal with this. :) Today has not been bad so far. :)) Thanks to all of you for the positive vibes, without which we could not have come this far. --Sujju

Jan.31, 2008
The medical acronym of the week seems to be GVHD, as in Graft versus Host disease. Treatment with steroids has helped relieve some of the pain and inflamation but the diarrhea and accompanying wait loss have not yet leveled off. Fortunately many treatment options are available for this and the doctors have added a new steroid to the regimen today. In the meantime, CMV virus that I was treated for earlier has become active again at a low level. So, additional medication is being given for this also. This will probably cause the counts to drop over the next several days while the virus is brought under control.

Of course, none of this is unexpected or even unusual during recovery from stem cell transplant. We remain optimistic that the changes in medication will put me back on the slow and steady road to recovery in the near future. --Prakash

Jan 23. 2008
Things have been a little hectic at this end and hence the infrequent updates. Prakash has graft versus host disease (GVHD), for which he is being treated. GVHD is very common during the recovery stage of stem cell transplant and the symptoms are diarrhea and intestinal discomfort and cramping. He is responding to the treatment and is starting to feel better. On the bright side, his counts are continuing to go up and he has also started teaching an online course. I am sure there will be more frequent updates soon:)) Sujju

Jan 09, '08
Slow, steady progress is still being made, and we hope to keep it going. The last checkup, which was on Jan. 07, went quite well. It was one of those checkups in which all the stock market indices were up. The white blood cell count (WBC) was up to 5.4, which is in the normal range for normal human beings. The hemoglobin was 13.1, which is a little lower than the normal range for normal humans, but I think it is not bad for a vegetarian. The platelet count was 107, which is the highest it has been for quite a while, though it has to get up a little higher. On the whole, slow, steady progress.

During the visit to the clinic I was also given a prophylactic treatment that is meant to prevent lung infections, particularly pneumonia. To administer this, they make you sit in a transparent plastic tent and give you a breathing that you put in your mouth and breathe through. As soon as you inhale, the medication hits your tongue and throat with the most indescribable, gosh-awful bitter taste that you can imagine. Popular exclamations like "Ugghhhhhh!" and "Yuckkkk!", which are sufficiently expressive in everyday parlance are woefully inadequate when it comes to describing the this medication. And you have to sit and breathe through the apparatus for about half an hour, while you gaze wistfully through the clear plastic of the tent at the fresh air just beyond.

In all fairness, I guess I should say that there are two redeemibng features to the medication. First, the awful taste goes away as soon as the intake of the medication is stopped, which is more than I can say for some of the dorm food I have had in mmy time. Second, the treatment needs to be administered only once in three weeks. I am already so not looking forward to the morning of January 28. -Prakash

January 04, 2008.
Happy, though slightly belated, New Year!! Sujju and I had a peaceful and pleasant New Year's Eve in our apartment and welcomed 2008 with much hope and optimism. Since we do not have a TV, we were exempted from the general requirement of having to watch the ball drop in every time zone. In addition to marking the New Year, Jan 1 was also Day 60 post transplant. Forty more days for the century mark!

We ended 2007 by going for another routine checkup on Dec 31. The checkup generally went well. My platelets were up to 93 from 63 the previous week, while my other "market indices" remained stable. My liver function indicators also continue to improve, with some of back in their normal range, and others moving in that direction. The viral infection that I was being treated for seems to be under control, so the medication for that has been discontinued. This may help the platelet count to come up more. I also gained about 2 pounds in the last week (one of the few occasions wherein this is a good thing). I still need to put on about 15 lbs to be in the ball park of my original weight.

My strength is also gradually improving. Very gradually, but it is improving! I can now walk for 40 minutes at a stretch, whereas I could only walk for about 5min. when I got out of the hospital. Since the weather is cold, I still do not go outside and do all my walking inside the apartment, which probably has not endeared me to the neighbors downstairs. I am planning to increase my walking time by a few minutes every few days. This should help to improve my stamina and could also establish the precise limits of the downstairs neighbors' patience. The next checkup is scheduled for Monday, January 7.

Hope for a good one! Prakash.

Dec. 25, 2007
Prakash had yet another routine check-up yesterday and things are continuing to improve. All the counts remained essentially stable, and the indicators of liver function continued to improve. The viral infection also seems to be under control. Just need to keep things improving for 7 more weeks! The frequency of the regular checkups has been reduced to once a week for now (yes, this definitely seems to confirm our declining popularity at the clinic).

On the whole, Prakash is feeling much better these days in body and spirit. Having just passed the winter solstice is also contributing, albeit irrationally, to a general sense of well being. The fact that the days are now lengthening and the hours of darkness are shortening every day has no medical relevance to my situation, but it is a surprisingly uplifting thought under the circumstances.

It has certainly been quite a year! Of course, it brought its share of shocks and challenges unlike anything we have ever had to deal with before, but the outpouring of heartfelt good wishes and support from all our friends, relatives, and colleagues at every step of the journey is what we will always remember most about 2007, much more than the travails and tribulations. We can never adequately express our appreciation and gratitude to all of you.

With your continued positive thoughts and blessings, we look forward to a happy 2008 and beyond, and we wish you all the same. Happy New Year! Sujju, Prakash, and Azad.

12/20/2007 7:15
We went for another check-up today and things appear to be going well. All my counts (WBC, Hemoglobin, Platelets) were up, and the CMV viral infection that I am being treated for seems to receding. I have lost most of the fluid that I had accumulated due to the liver problem in the hospital. As a result, my weight, which had been dropping steadily, has finally stabilized at 136.5 pounds, down from about 185 pounds when I was waterlogged. What a relief!! Of course now I have to put back the part of the weight loss that is due to the chemo. If I can gain about 20 pounds, I think I should be in good shape.

The frequency of our scheduled visits to the clinic for the routine check-ups has also been reduced from three times a week to twice a week. We are unsure whether this is an indication of my improving health or my declining popularity at the clinic, but are we optimistically choosing to go with the first explanation. The next goal is to get it down to once a week!!

Tomorrow also marks 50 days out of the planned 100-day post-transplant recuperation period. It is tempting to think of the 100-day period as a hill that peaks at 50 days, so that it is all downhill coasting from here, but it is apparently not that simple. Infections, Graft Versus Host Disease, and several other complications are still possible. Nevertheless, we are hopeful that the second 50 days will be generally less taxing than the first 50. Wish us luck!! Prakash.

12/15/2007 11:00 pm
We went for a routine check-up on Friday and things are going well, which is to say slowly edging in the right direction. The three "stock market indicators" for my counts, viz., white blood cells, hemoglobin and platelets, were all up on Friday, which is a good thing. In fact, I think I did better than the actual stock market last week.

We now have to go to the clinic for a routine check-up 3 times a week. This is also a great improvement over the first week or so out of the hospital, when we had to go to the clinic every day. It almost felt like we had checked out of the hospital and checked into the clinic instead. With the current 3-times-a-week schedule, we get to relax and spend a little more time in the apartment, which helps physically and mentally.

The next check-up is on Monday. In the meantime, have a good weekend! Prakash.

12/12/2007 2:00pm
It has been 2 weeks since I was allowed to leave the hospital, much to the delight of myself, Sujju, and, of course our insurance company. We have been staying in our rented apartment in Kansas City since then, and will continue here until February. Things have gone quite well over the last 2 weeks. The fluid retention that I had has become a lot less, and that has me feeling a lot better. In fact, over the last 3 weeks, I have shed about 25 pounds of extra fluid, so you can imagine the relief.

Tests last week also showed that I was having a viral infection that was keeping my counts low. I am on medication for this now, and the counts are slowly coming up. Unfortunately, the medication itself can lower the counts, so the right balance must be found between treating the virus and keeping the counts up - yet another Catch-22 in the treatment plan. If all goes well, this problem should be resolved in another couple of weeks.

By the way, we now have our internet connection, and hope to be better connected. The warm welcome from the international spam community as soon as we got our connection was most touching - judging from the volume of spam, it seems they really missed us :).

It is now 42 days since the transplant, which means we are not yet at the half-way mark of the 100 days when we can go back to Manhattan. But even though things are moving slowly, they are moving in the right direction, which is by far the best one can hope for. One thing we have come to realize with this entire treatment protocol is that things only get better very slowly, whereas things can turn for the worse quickly. So we are content to be the tortoise rather than the hare, and come February we will return to our normal life. In the meantime, we continue to depend every day on what has sustained us through these difficult times - your good wishes and positive thoughts. Keep them coming! Prakash.

11/27/2007 10:30pm
Since Sujju is busy getting settled in their new apartment, I thought I would write a quick update. After being discharged from KU Medical Center this afternoon, Sujju and Prakash made it to the apartment this evening around 6:00pm. Prakash was extremely excited to be unhooked literally and emotionally from the hospital and to go back home! Sujju, I am sure will stay busy for the next day or two setting up the kitchen, making her trademark "stoup" for Prakash and wiping down every open surface in the new apartment with Purell! Watch out for those Pfizer stocks! Beena

11/19/2007 9:30pm
We are still in the hospital. Prakash started having some discomfort in the abdomen on Friday. They took some x-rays on Saturday which showed fluid in the abdomen. This could be due to graft versus host disease (common after stem cell transplant) or due to Veno Occlusive Disease (reaction to strong chemos). They removed the fluid on Sunday, after which Prak was feeling much better. They are still trying to determine which of the two conditions Prak has. The liver specialist will be doing a liver biopsy tomorrow and they will also be running a whole battery of blood tests. Hopefully, they will figure out what is going on in the next few days. On the bright side, Prak's counts continue to increase. In spite of everything that is going on, Prak is very positive and knows that he is going to get through this, with all your positive vibes and good wishes, of course:) Sujju

11/13/2007 9:50pm
Today is day 12 out of transplant and Prakash is doing okay. His white cell counts are slowly starting to climb upwards. This means the donors cells are starting to grow in Prak's marrow:)) This is very good and very exhausting for Prak. He feels very tired and sleepy (partly due to the drugs also) and sleeps most of the time. When awake, he cracks a joke or two and then decides that he needs to go back to sleep!!!! The doctor seems to be happy with Prak's progress so far. Hopefully he will continue to get better and will be able to put all this behind him. Keep sending positive vibes his way:)) Sujju

11/02/2007 11:45pm
November 1st was a very memorable and moving day. Prak's transplant went well and took an hour (9:44 a.m. to 10:44 a.m.) The donor was a very generous person and had given a very good yield of stem cells. Whoever she is, a VERY BIG THANKS to her. Prak had some chills and fever during and after the transplant, but that was not unusual. The extreme fatigue was an excuse for Prak to snooze and snore!!! I was with him during the transfusion and had goose bumps because I knew that this was going to give him a new lease on life :) . Today (Day 1) has been much better because Prak does not have a fever. He went for two walks and has been his usual self, cracking jokes and smiling at everybody and doing what the docs ask of him. He is very positive and looking forward to a complete recovery. -- Sujju

10/30/2007 3:35pm
The chemo was completed this morning and Prakash is doing as well as can be expected. He continues to remain very positive and has his eye on the goal at all times. The donor cells are being harvested today and will get here late tomorrow night. Due to the late night arrival,  the transplant will be around 9:00(ish) on November 1st, in the morning. Keep sending those positive vibes this way. -- Sujju

10/24/2007 6:45pm
Things are finally rolling (for those still following the airline analogy, we are now speeding down the runway for takeoff). The donor clearance finally came through late on Monday, Oct. 22, and we started on the pre-transplant chemo on Tuesday, Oct 23. So far things have gone well, and we hope they will continue in this vein.

Of course coming back to the hospital meant that we had to move out of our home of the last 7 weeks, viz., the home of our friends Murali, Beena, Keshav and Utsa. They graciously turned their home and their daily routine upside down to accommodate us and our special needs. Their home was not just "home away from home" for us; it was home. BTW, Beena is also the one who designed and implemented this website, and still continues to maintain it. We are so thankful for the support and help of our friends and relatives throughout this episode. -- Prakash

10/19/2007 11:30pm
We are cautiously moving forward again. The final medical approval on the new donor is expected on Monday. I'm scheduled to be admitted to the hospital on Monday with the pre-transplant chemo starting on Tuesday. Based on this schedule, the transplant date will be October 31st. I couldn't ask for a better treat for Halloween. -- Prakash

10/14/2007 9:00pm
Oooops! Sometimes when you are standing by for take-off, you end up waiting on the tarmac longer than you expected. We received word from NMDP that the donor who had been identified was being taken off the NMDP registry and therefore no longer available to us. Owing to NMDP confidentiality policies, we do not know the reasons behind this, but it was certainly somewhat disconcerting. Fortunately, the hospital had kept the search going even after a match was found and another ten-out-of-ten match was found just last week. The process of obtaining donor consent and setting up the donor physical are currently under way. We hope to hear about these within the next few days. It appears that this will delay things by a few days but we are hoping that things can be wrapped up within a week. So we are still on the tarmac, but we are sure the will be cleared for take-off soon. -- Prakash

10/11/2007 6:45pm
We are cleared for take-off! We had a meeting today with the doctor and the transplant coordinator where we received my test results, including the bone marrow biopsy and the information from the donor. All tests on both sides went well, so now we are proceeding with the transplant. I will go to the hospital on Tuesday, October 16th. The pre-transplant chemo will start on October 17th and the transplant will take place on October 25th. Stand by for take-off! -- Prakash

10/9/2007 8:45pm
We were hoping to find out the results of the bone marrow biopsy today, but the lab has not got it done yet. So we are still on hold. We hope to find out the results later this week. There is a possibility that this may delay things a little. But hopefully, not by much. In the meantime, I am still gaining weight, going on walks and trying to stay clear of infections. I am almost back to my original weight. In a week or so, I might have to start dieting. Will do. -- Prakash

10/4/2007 9:30pm
As further proof of my stupidity: I went to visit the dentist again. Fortunately, this time I got off lightly. They checked the locations where the teeth had been extracted--presumably to verify that the teeth were actually gone--and then did a thorough cleaning of my teeth and gums. This was done to reduce the risk of infection during transplant. The procedure caused me minimal discomfort and I can eat non-mushy food. So all things considered, this trip to the dentist was quite successful. Tomorrow, I will going in for my bone-marrow biopsy and the results should be available on Monday or Tuesday. Let's hope for the best. --Prakash

10/01/2007 9:15pm
The big update for today: WE HAVE A POTENTIAL "TEN-OUT-OF-TEN" MATCH! Lets say that there are still a few hurdles to be crossed before we can proceed to the transplant. First, the potential donor has to pass a physical. Secondly, all the results from the tests that were administered to me should be favorable. And third, the results of the bone marrow biopsy that Prakash is scheduled to undergo this Friday, should show that he is still in remission. If all these check out, the pre-transplant chemo will start on October 16th and the transplant will take place around October 24th.

We would like to thank everybody who helped out in the process of finding a match by organizing drives, getting registered and giving us your positive thoughts and moral support. As per NMDP policies the donor is anonymous, but we do know that it is a male of South-Asian ethnicity. This underscores an important point. When it comes to marrow donors, ethnicity is a factor of overwhelming importance. From this point of view, it is important to continue the momentum that has been built in conducting bone marrow drives specifically targeted towards recruiting South-Asian and minority donors. This is certainly an effort that we plan to be actively engaged in after recovery from the transplant. In the meantime, we would like to encourage all of you to continue your valuable efforts. Thank you all once again for your perseverance and support during the search for a match--without everybody's help it would have been very difficult, if not impossible to bring about this successful conclusion. -- Prakash and Sujju

09/30/2007 1:57pm
Things are still going pretty well. We made a visit to the temple on Friday. I still have to wear a mask whenever I go outside. This seemed to cause momentary panic for the temple folks, but they quickly recovered. On Saturday, we went for my check-up. The hemoglobin was a little bit low, so they me one unit of blood. This was the first blood transfusion I have needed in almost three weeks. Definitely a vast improvement over the times when I needed it every other day. My parents, Azad and a couple of friends visited me this weekend, which is always nice. Next check-up is on Monday. Let's hope for the best. --Prakash

09/27/2007 9:45pm
My teeth, or more precisely, the holes where my teeth used to be are healing surprisingly well. There has not been much bleeding or pain so far. If we can keep it that way for two or three more days, it should be fully healed. I have also been going for evaluation tests for the last couple of days. I haven't had so many tests since my undergraduate days. I hope I do better on these than I did back then. The highlight of the day was going for a walk, OUTDOORS! That may not sound like a big deal except that it's the first time the doctors have allowed me to do this since July 15th. It was nice to go outdoors just for the sake of going outdoors. Next time I hope I don't have to stay indoors for two and a half months to appreciate this. -- Prakash

09/25/2007 10:15pm
For a change of scene, today I went to see a dentist instead of a doctor. The net result: three teeth yanked out and mushy food for the next week. The extractions were necessary to minimize infection risk during the transplant. Nevertheless, the next time I want a change of scene, I think I'll go see an accountant. -- Prakash

09/24/2007
The big news from today's check-up is that the platelet levels moved up for the first time from the chemo. This is a good sign and it indicates that the bone marrow function is being restored. The hospital also started a series of tests to evaluate my condition. These tests will continue this week and the results will guide the doctors in deciding the future course of treatment. Today's tests included chest xrays, MUGA scan of the heart and the drawing of what seemed like several gallons of blood. The next round of tests is scheduled for Wednesday. --Prakash

09/23/2007
This was a big weekend for the Bone Marrow donor drives. Drives were held literally from coast to coast. Over 500 new registrants were added to the NMDP registry. More drives are coming up soon. Please see the DRIVES page for a drive near you. A big thank you to all the organizers, volunteers, sponsors and of course the donors. We are extremely excited about the wonderful response. We know that Prakash is definitely going to find a donor very soon. Let's continue the amazing work that you all have started and get more and more people registered. Prakash has another check up tomorrow. The doctors must like him very much; they seem to want to see him all the time. :) -- Prakash and Sujju

09/20/2007 8:40pm
Today's check-up went quite well. The white blood cell count was in the normal range for the first time in two months. The other counts are also coming up steadily. We hope to keep this going. -- Prakash

09/19/2007 6:20pm
The Marrow Drive at Milpitas, CA was successfully conducted on the 18th. Other than that, the last two days have been very uneventful - which, these days, is a good thing! I am generally feeling well and the counts are creeping up. Next check up is tomorrow. Let us hope for the best.... -- Prakash

09/17/2007 1:20pm
We went for a routine check-up today with Dr. Abhyankar. Counts are steadily improving and the bone marrow biopsy shows no signs of relapse-good news all around! -- Prakash

09/16/2007
Marrow drive was conducted at the temple in Malibu CA, on Saturday, September 15. The drive turned out to be very very successful! A big thank you to all the organizers, volunteers and donors. Let's keep the ball rolling! -- Prakash

09/14/2007
After three days at KU Medical Center due to an infection, Prakash is back home and doing well. He has an appointment on Monday with Dr. Abhyankar to discuss further treatment. Meanwhile Prakash continues to be in good spirits and is busy working on crossword puzzles, helping his students and enjoying junk food. -- Sujju