Update

Dear All,

An update has been long over due. The delay is due to the fact that I was in and out of hospital few times -  from 29th of October to 13th Of November. I was down with GVHD (Graft-versus-Host-Disease ). Well, the good part is that having GVHD  indicates that the body(T-cells) is capable of fighting out foreign cells. This also means that the chances of relapse are reduced. So it was sort of a mixed reaction for my admission as the Doctors were happy that I had some form of GVHD ( Stage 2 ) and they could bring its effects down by administering some steroids and Cyclosporin which was in-fact stopped about a week before 29th.

As the GVHD had effected my liver and stomach detailed Endoscopic studies and tissue biopsies were done to ensure the extent of problem and decide on the dosage of the drugs regime that was to be followed. The GVHD was brought under control with in the first week. However, due to the Steroids, my body had bloated up and the water retention in my body increased which increased my weight from 54 kg to 61 kg within 7 days.

Normally it is un-coded law that what you get within the 1st 100 days of your BMT is considered or termed Acute GVHD and what appears after 100 days is considered as Chronic GVHD. What I have had is both Acute and Chronic but within controllable limits. This is why for the 1st 100days they want you closer to the hospital so that any sort of Acute GVHD can be treated by them.

Now they would have to stabilize my condition with the dosage of the Steroids which they tapper down the bare minimum and also the dosage of the cyclosporine is regulated for a normal level.

I am going for weekly check ups and the good news is with all these variations my counts are all holding good and hence the general health condition is fine.

Coming weeks would answer the future plans for me and my Vellore stay is fast approaching 365 days( One year so to say).

Regards

Rajesh

The 100 day milestone

As we pass the hundred (100) day milestone, post transplant, please continue to keep Rajesh in your prayers. We are all praying for his progress to continue as well as it has been over these 100 days. Hopefully he will recover well enough to go back to his routines, soon.

Out of the hospital

Dear All,

After sudden chills and fever due to an E-Coli infection on my Hickman’s line, I was admitted to the hospital on the 6th of Sept. I got discharged from the hospital yesterday night after 14 days. I had to take antibiotics every 6 hours. The Hickman’s line has been removed as it was causing the infection. This was the sort of setback they were expecting after the BMT since my immunity levels are low.

Infections like these happen due to very many reasons. So it's not as if I have been careless. I have also been administered with an Immunoglobulin Injection to improve immunity level. All these days, the immunity level was controlled by the immuno suppressants drugs. They would have to keep juggling between these two drugs for some time and hope for no more such infections / setbacks. My general health and counts are holding on fine. For the next few months, it would a weekly visit to the hospital. My appetite is slowly and steadily getting back to normalcy but I have a long way to go. Do remember me in your prayers to help me get past this phase without much hitch.

Thanks for all the support and strength provided so far. I am glad to say that with the current status of my MUD transplant, there are at least 4 or 5 cases waiting on the wings to go through the process. This gives hope to a lot of patients who would have otherwise not had a chance. So we have all set a path for a lot of people to follow and pray that all these cases would proceed smoothly. Kudo’s and thanks to one and all who has been a part of it in some way or the other.

Thanks and regards

Rajesh

Update

Rajesh's fever and infection have cleared. He is in the hospital to complete 14 days of antibiotics treatment. He will be getting discharged around 19th September. Counts are normal.

Update

Rajesh has fever and chills. He is back in the hospital to check it out. His counts are normal. It must be some infection and they are investigating. His food take is very little and that is causing some weakness. So please keep the calls only to uncle or Padmaja.

Photos from visits

Home after Transplant



With Ravi's family



With Nagu's brother and father

Rajesh video

To see this video in Google video, click here

Transplant!

We are delighted to announce that Rajesh Ramanathan underwent a bone marrow transplant in the early hours of Friday June 27th as per schedule in CMC, Vellore, India. He has started the next and hopefully last phase of battle with the dreaded disease of Leukemia. Rajesh's bone marrow transplant - from an unrelated donor - is the first time such a transplant is attempted in India. Please keep Rajesh and his family in your prayers.

Thank you, Donor!

Rajesh will be undergoing the bone marrow transplant on Friday the 27th of June.

On behalf of Rajesh, his family, friends and all his well wishers, we sincerely thank the donor who came forward to donate and save his life. God bless your heart.

Thank you, Thank you, Thank you!

HelpRajesh Team.

Update from Rajesh

Preparations are underway and everything is on schedule for a transplant on 27th. Yeah!

Rajesh has completed two rounds of Chemo and three rounds of radiation. There are three more rounds of radiations ahead. He had a bad day yesterday with headache. But today he sounded much better after the 'roasting'(his words). But I could hear the strain in his voice.

He was in good spirits. He is still getting food from home but all the food goes thru the steam to sterilize. He said even the biscuit goes thru the steam! The new facility seems to be top quality and he likes it. He is in isolation and access is limited.

Update from Rajesh - BMT ahead...

Dear All,

Looks like the waiting is over, my rather extended parole days with my family is coming to an end as of tomorrow. I would be admitted tomorrow for the Bone Marrow Transplant program. The schedule would be :

19th Admission
20th Hickman’s catheter
21st Chemo (Cyclophosphamide)
22ndChemo (Cyclophosphamide)
23rd – 25th TBI
25th night we expect the Donor Cells to be here in Vellore hand carried by the NMDP personnel and as per the schedule I am to have the transplant on 26th morning.

Hopefully this should be the last part of my treatment. I would be admitted into the Bone Marrow Transplant rooms from the 21st onwards which means I would be in Isolation from then on until I recover from my transplant and my counts reach normalcy.

The contact numbers would remain the same for now. The phone number in the hospital room shall be provided once I have it.

Thanks and regards

Rajesh

Update from IVY

I had a short conversation with Rajesh today. He is back in Vellore but not in the hospital yet. He went to Palakkad with family for about 12 days as there were some delays from the donor side. They reached back because Rishi’s school is reopening on 5th.

The 1st Donor has been found medically unfit for the donation and hence they are now looking at the 2nd donor. So there may be at least 10-15 days delay.

This is quite disappointing because he was geared up for the transplant as per original plan but came to know of this day before yesterday. However, he is still taking things in his stride and is in high spirits having had this break. He has also gained some weight after eating authentic Kerala food.

Let us continue our prayers for quick closure of formalities with the 2nd donor.

Warm regards
Ivy

Update on BMT.

Dear All,

As you may have expected I should have been in Palakkad enjoying the rains there. However due to certain changes in the schedule, we have cancelled the trip to Palakkad and stayed back in Vellore. The reason for this is  the possible early arrival of the Bone Marrow Extraction from US. 

The earlier plan was that it would be cryogenically transported here. However it was made clear that NMDP would send the extraction not cryogenically but in dry ice at -4­ C and this has to be transfused into me with in 72 hrs of extraction. So all the preparation have to be done to me prior to the dispatch so that as soon this arrives, I should be ready for the infusion. 

So I would be admitted on the 21st and my Hickman’s catheter would be installed by 22nd followed by two days of Cyclophosphomide chemo( 23rd and 24th) and 3 days of total body radiation( 25th,26th, and 27th). So if the extraction is done on 26th or 27th it would reach Vellore by 28th or 29th by which time I would be ready to receive this. 

The Doctor suggested that I could go for a week to Palakkad. Given my leg condition , the risks involved of the travel and change of place etc., we decided against it and planned to stay with the family here in Vellore itself for it is better to finish the treatment off as early as possible.

So I would humbly request you all to pray and support me for this final phase as you have all been doing it for this long. Hopefully I should finish this phase off without much issue.

Regards
Rajesh

Close to Transplant!

Update from I.V.Rajesh from UK:

Spoke to Rajesh this morning.

Rajesh is in good spirits since the bone marrow match has been found and the transplant will happen in June 1st week. He is eagerly waiting to go on a short break to Palakkad in the next few days so that he can come back recharged.

He has started using elbow crutches to support his leg. Pain is still there but has reduced quite a bit. He also keeps watching the IPL matches, although he feels some of them look completely rigged.

Act of generosity.

This past Saturday, Raji and Christopher Thevathasan (of Richmond, VA) demonstrated an act of kindness and generosity that begs to be mentioned here.

Each year they host a Sri Lankan food stall at the Asian American Celebration in Richmond downtown. They donate the proceeds from this effort to a worthy charity of their choice. This year they decided to support the cause of our dear friend Rajesh. Words cannot express the gratitude of the HelpRajesh team. We thank the couple from the bottom of our hearts.

It is also important to mention the contributions of the Cooks4Cure team, which volunteered their time and effort in preparing potato curry and raitha that was served at the Sri Lankan stall. This was sold along with the Vegetable Pulav, Sri Lankan style curry chicken and Lemonade that the Thevathasan's had prepared.

HelpRajesh Team

Update from Rajesh

Had a chat with him this morning. He is resting after another gruelling round of chemo. His counts are a low currently. He is in good spirits, watching the IPL cricket matches.

Things are moving forward towards a early June transplant. His donor(s) have been identified. After his counts come back up, he will be looking at a discharge from the hospital for a week or so around the middle of May. He will come back, towards end of May and get ready for the transplant.

Hrishi has gotten an admission into a local school, which he will join when schools resume in June after the summer break.

Narayanan

Correction to previous post

Please note the following errors from the previous post.

The two donors have given their blood for confirmatory typing and NOT their marrow. The process is to go through the confirmatory typing. Let the doctors at CMC analyze the results of all 3 or 4 donors and then narrow down the donor. The extraction process will then begin once the transplant date is set. The stem cells will be transported (hand carried by NMDP authorized and trained personnel local to the donor center) to CMC.

Narayanan

Good news from Vellore!

Dear All,

Please find few of the latest photos from Vellore.

The 3rd Surgery was successful and I am slowly and steadily recovering from the same. Ortho people feel that the bone is doing fine and found no traces of any fungal infection anywhere. The site of hip bone from where the Bone Grafting was done will be the pain area and would hurt for longer period. My stitches would be removed next week and the good news is that two donors have approached NMDP and donated their Marrows for Transplant.

We are finalizing the mode for bringing the marrow here and the tentative days for the Bone Marrow Transplant(BMT) to start. In all this week has been a rather good week. My walking is still limited to a few steps as my right Hip joint hurts and hopefully I should be back to my regular walks using the walker before the end of the month.

Regards and Advance Happy Vishu to You all.

Rajesh

Update

Rajesh's surgery on 2nd April went very well. The bone grafting went well too. But he is still under a lot of pain from the grafting. In another few days, he will try to sit up and go thru further physiotherapy.

There is no word from NMDP yet about interaction with the potential donors yet.

From the horse's mouth....

Dear All,

The day before yesterday was my luckiest day in the last two months as I got a parole from the hospital room and got to be with my family at home. This was the 1st outing for me from my Hospital room after Jan 19th. Though there was the challenge of how I would climb the stairs to reach home with my walker and one leg, I was hell bent on taking this opportunity given by my doctors. So after my fungicide injection on Saturday I left for home. I wnent back on Sunday afternoon for the next day’s injection and continued the same for Monday also.


Well, I have done so and I am really energized to take on the next set of treatment from now on. Being with Varun at home and seeing him in full-flow was really breathtaking and energizing. Unfortunately Rishi was in Bangalore enjoying his time with cousins. I am now back to my room getting ready for my next operation on the 2nd.

Regards

Rajesh

Surgery moved to April 2nd

Rajesh's surgery has been moved to April 2nd. He has been shifted to Room no 709 in the 7th floor. The phone number in the room is +91 416 2283938

Rajesh shifted to 7th floor

Rajesh has been shifted to Room No 704 in the 7th floor. He will be undergoing the third surgery on his hip tomorrow(28th March). The move to 7th floor is to facilitate easy access for the Ortho doctors for post operative care. The 9th floor being a hepafilter area will not be convinient for that access. His counts have reached normalcy and he doesn't require the hepafilter facilities.

Another wonderful news is that NMDP has identified a few potential matches to donate bone marrow for Rajesh. NMDP is in the process of contacting those eligible donors to find out their willingness to donate and to setup further medical tests.

Here are a few pictures - first was taken before Rajesh left Dubai and the rest from a few days back.

Update

Rajesh has started moving around using a walker. He can not use his right leg yet. His counts are looking up. The surgery for the leg has been scheduled for 28th. He is still in a lot of pain as one of the bones is not fully set yet. The third surgery will correct that. He is weighing 52 kg down from 68 kg.

Rishi will start attending Sunbeam school in vellore in June. Now he will get some tuitions to cope up with the new subjects.

Update: Bhattar visit and more

Ramabhadran visit on 15th:

He spent about 3 hours with Rajesh. He looked cheerful and the count has gone up today. He was also feeling better after the 2nd surgery in the leg. Based on the improvement in the count he will have his third surgery in the leg. Nair has started shaking the leg (His trait from Pilani days) as usual and that gave me the impression that the surgery has had good effect.

Narayanan's call with Rajesh(3/18):

He is doing much better. His counts are on the way up. Had a bath after about a month and a half. The Vellore residents are thankful about that.(his words, not mine) Once his counts are up to a certain amount, he is likely to have his 3rd surgery (to remove localized medicine delivering beads and to graft some bone) on his leg. This will hopefully be the final one. He has started to walk around a bit now, with the assistance of a walker.

Sankaran's dad personally delivered Lindi lotions that we had sent for his use. Was very grateful and happy about that. Donor matching process is still on-going. Awaiting results of the high-res reports on the donor for whom the Confirmatory Typing has been ordered.

They are planning to enroll Hrishi in a school. Uncle, Padmaja and the kids are doing fine, under the circumstances.

Narayanan

Update from Rajesh

Dear all,

I have been shifted to 9th floor which is a Hepa filter floor where I have finished my 2nd Chemo and today had the stitches of my 2nd operation removed as the healing is going on fine. I am awaiting information from NMDP for my High resolution matches and prepare for the marrow transplant. My room number is 903 and my direct phone number has therefore changed to +91 416 2283984.

I am unable to sit for long periods and the internet connection is really bad these days and hence I am not able to be on the net for long.

Regards to all and thanks for the support and prayers provided for this long. Hopefully it should take me through the balance of the treatment.

Regards
Rajesh

Update from another friend who visited Rajesh

Lakshminarayanan studied in BITS with us and visited Rajesh yesterday. His message:

I was on an official visit to Chennai and used the opportunity to visit our dear friend Rajesh who is undergoing treatment at CMC, Vellore. He is in Room 903 Building A9 now. I found Rajesh quite cheerful and looking forward bravely to the chemotherapy sessions ahead of him. His femur bone fracture is healing well. He is able to sit up.

We recalled old times at BITS, names and characteristics of several mutual friends etc. I was allowed to stay there only for about 30-40 minutes. He also mentioned about his work experience so far - in B'lore, middle east etc. While I took leave of him, he said "the prayers of all my friends and family will get me out of this."

On the whole, I got a feeling that he is on a full recovery track. And let us all pray for his speedy and complete return to good health.

Regards

Laksh

UPDATE

Spoke to Rajesh a little while ago. The doctors have started the 2nd phase of Chemo from this morning. He will have his chemo dose in the morning and evening for 3 alternate days. He has still got severe pain in the leg. But he mentioned that he has learnt some little tricks to mitigate the pain. Sounded little groggy - perhaps due to heavy dosage of pain killers that he is on. He was in quite good spirits though - pepped up a little having watched India beat Sri Lanka in the tri series one day match.

Plenty of good work has been done with the marrow drives and fund raising. However, all of us need to maintain the momentum, particularly for raising more funds.

Regards to all

Dinesh.

Cooks4Cure

Last week saw the first fundraising effort thru catering by the Richmond families. The "Cooks4Cure" team of Meena Sankaran, Chitra Ravindran, Vanaja Narayanan and Sreelatha Parasu made a great effort and it was a huge success. They cooked for the Richmond Tamil Sangam's Pongal program and RTS Executive Team graciously allowed them to sell the food as the proceeds were going to HelpRajesh.

The ladies sacrificed a few hours of their valueable family time on saturday, and pulled it off. The food was great and appreciated by all. Sankaran made a last minute dash to Costco and purchased soft drinks and water. That was well worth the effort.

The emphasis was to keep the cost low and the ladies achieved that objective. The total sale was over $560 and the net to HelpRajesh should be $400+. You can see some of the pictures from the food stall in the slideshow on the right.

The momemtum is picking up and word is spreading around like wild fire in the community about the quality of the food and the cause it supports. The Cooks4Cure team has already bagged another huge order for a Bharatanatyam Arangetram in Richmond on March 1st. This is a bigger undertaking as they will be cooking for 300 people. The amazing part is that a few ladies from the local community are chipping in and have signed up to volunteer and help the four principals.

Kudos to the Cooks4Cure team.

Team HelpRajesh

Update: Day of femur repair

Update from Rajesh's dad:

Today, the 15th of February 2008, a surgery was successfully performed on Rajesh to stabilize the femur bone with metal inserts. You may recall that a prior attempt to clean up some of the fungal infection on the bone, resulted in a fracture of that bone.

He is recovering well in the ICU. Apparently he had excessive blood loss and required a blood transfusion. But all is well now. He is still in a lot of pain and restless from the effects of the anesthesia and the medication. But all in all a successful surgery by all accounts. Apprently within the next week or two, he will begin the process of physical therapy, which will include walking with crutches. There is hope that at some point in time, he might be able to lose the metal insert, if his bone grafts well.

Could'nt talk to his dad for long, due to all the attention of the doctors that are in the ICU right now, along with him and Rajesh. He said he will give us a clearer/detailed update tomorrow.

So until then.

Narayanan

Update on Rajesh

The four of us from Richmond got together and had a long chat with Rajesh on Saturday night. He is currently getting treatment for the fungal infection. The surgery on the femur bone will be done after 10 days depending on the outcome of fungal treatment. Rajesh told us that the problem with his femur is away from the ball and socket joint and is now less likely to require a joint replacement. He might still however need some kind of metal insert to stabilize his bone.

And the following is not for the weak-hearted. They have drilled a hole thru the bone below the right knee when he was awake and talking to them. A metal rod thru that hole in a traction keeps him straight. Because of that, the pain is less now. But 'less' is here is relative. From spasmodic, gut-wrenching pain, it has dropped couple of notches.

The donor search is underway at NMDP and let us hope for the best.

The last week had ups and downs for all of us. The good news is that Sonia Kumar, another AML patient, found a matching donor. And we also received the crushing news that we lost Bevin Varughese to this dreaded disease. May his soul rest in peace.

So plan your next drive soon to stop further losses! ITS NO TIME TO SIGH.

Update on Rajesh's leg situation

The exact medical facts may differ in the following but this is Nagu's understanding of the situation based on a call with Rajesh and his father:

Rajesh's leg problem has worsened. They saw some fungal infection on the femur(thigh bone) and opened to take a sample for analysis. In the process, the bone was scraped causing a small crack and that disturbed the hip joint. Now, the bone is out of the joint and he is bed-ridden. And in a lot of pain. He has been on morphine continuously. So if you call him, please do not talk to him that much and have the conversation with his father.

In another 10 days, he would be heading into a surgery for replacing the hip joint. The next round of chemo will not start until this is taken care of. The silverlining - if there is one in this - is that the fungal infection has been identified now and not in the middle of a chemo round.

Why do all these happen to this guy....

Anyway - he is battling it out and is in immense pain. He wanted to talk but had to hand over the phone to his father as he could not withstand the pain.

His wife Padmaja and his kids come everyday in the morning at 11am. She brings the food. Kids play in the play area. After spending some time, Padmaja leaves with kids after 1. That has been their schedule. Padmaja has her hands full with the little ones and looking at ways of continuing Rishi's studies. A friend will be bringing Rishi's book soon.

Keep them in your prayers and do what you can to help them.

Update from Shashi - Rajesh's brother-in-law:

Visited him on 2nd and 3rd of February. Leg situation bad and will continue at this level till 20th. He is on an Antifungal for curing of the bone infections. After that they will schedule a surgery to correct the problems. Which may, in the worst case, be a hip joint replacement or otherwise a Metal jointing. This can be evaluated by the doctor only during the actual surgery. He is on traction and cannot move out of the bed. Has spasmodic pain attack on and off inspite of the morphine. Most of the time he is in a drowsy state on account of Morphine.

Update on the leg condition

Dear All,

Finally we have solved my leg pain mystery. It has been diagnosed as Osteomyelitis, which is just infection of the bone. My right femur seems to have this problem and there are two clear area where abscess is seen. This has to be surgically drained. So this would be done during the next week before the Chemo is started. This would provide more time for our Bone Marrow search and subsequent extraction and follow up. This means we have more time to progress in these aspects.

I am a bit worried of the surgical procedure hopefully it should be only a minor one, however happy that I would get rid of my wretched leg pain after that. So please pray that I tide over these easily and move on with my original treatment as soon as possible.

Thanks and regards
Rajesh

Update from Rajesh

I finally completed my second MRI and Bone Scan(Nuclear Medicine)today for my leg problem. Doctors seem to be arriving at some answers about it, which make me feel happy.

In all likelihood my Chemo may start from next week after we have sorted out the problem with my leg. This is just a short update and by Monday I will have a longer and more detailed update.

Regards

Rajesh

Update from Rajesh

Dear All,

Here I am, back in the hospital in the new block of buildings, it does look different, I am in room 709 on the A7 ward and my direct number to contact would be +91-416-2283938. For a second, once inside the room you are not sure which place you are in, the room is spacious and definitely is high tech, a lot of thought has gone into making the way it is. It is really great ! I shall try and send you all snap of this as soon as possible.

The only problem. My leg pain which seems to persist. Tomorrow I may have to go through a MRI scan for further investigation of this problem. A bone marrow may be done tomorrow to reassess my condition. Today my counts look very interesting and resembles the sensex index, my platelets have hit the all time high of 350K plus which I have not had in the last year, my WBC is 7400 and HB 8.4.

The donor matches are going on as planned. Some correspondences happening between the hospitals and the respective centers. Hopefully we would be in a better position to know the progress of this in the coming week. Possibilities of the matches from US, AUS and may be even Singapore. All options are still open.

Otherwise all of us (Dad, Padma, Kids and my in laws) doing fine and back to the respective positions for the next combat. All of us were down with a small Viral infections which started of with Varun and finally ended up with Padma’s mom. These are the side battles we had during this break.

Regards
Rajesh

P.S: Visited with Dr. Ramesh’s (refer to comments in the blog) wife. He was not there as he comes only for weekends so shall meet him later.

Update

Please note that Rajesh will be back in Vellore on the 19th, instead of the 16th. There is a likelyhood of him moving into a new block at the hospital. So stay tuned for updates on his contact information.

Appeal for monetary donations

Please click here for details on how to contribute to Rajesh's medical expenses. We request you to forward this information to all your friends and family. 

http://helprajesh.googlepages.com/PLEAFORDONATIONS.htm

Update from Rajesh!

It was great to see you all in person, when you have friends like you all I don’t need a new year date to celebrate, anyway thanks for all the great support you all have been providing to me and my family, definitely I shall fight my best and expect to come out of it victorious.

I have finished my 1st round of the battle and my health has reached almost normalcy. My counts have all come up unaided ( that is without the growth factor injections) which shows that my bone marrow is doing well as of now. My HB is about 8.7, WBC is 4700 and Platelets are 38K ( may be considered a bit low) but for patients like me it is ok.

This means that I have earned a break from this round. So in all likelihood I would be discharged from the hospital today and would proceed to Palakkad to Padma’s dad’s residence for a 10 day break just to recuperate my body and come prepared for the next round. That is a relief and a good sign. I can get some time with the kids whom I get to see every day but can’t hug or huddle until I am out of here. So I am looking forward to this break in earnest.

As regards to near future programs, my High resolution HLA of mapping my Blood samples have been sent to AIIMS Delhi by CMC Vellore and they would be getting the report which would then be forwarded to NMDP for the HI RES Mapping with the current list of matches ( Obviously would include the donors from you drives).

From the Doctors here, these process may take a couple of weeks so may be close a month too, that does not permit me to take a large break because I am in remission now and I have to make sure that my disease is also well under control. That is why I would be back here on 16th and based on my Bone Marrow test on my return, I may have to go through another set of Chemo and be ready to receive the Donors Marrow.

If all goes as planned then, in all likelihood I would have this transplant done soon and then like my 1st battle await for my recovery back to normalcy. The tricky part here is that some times the reactions of the new donor’s marrow and my existing marrow would be a bit complicated. Anyway we shall hope for the best and assume these would be minimal for me.

regards

Rajesh