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

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

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.

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.

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 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 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

Help Rajesh Ramanathan

Many of you may know Rajesh Ramanathan who was in Bahrain from 1993 to 2002 working with Intercol (S+I Division). He left Bahrain in 2002 to work for KSoft in Dubai and has been there since then. Earlier Rajesh worked in Semi Conductor Complex in Bangalore after graduating from BITS, Pilani.

Rajesh was diagnosed with Blood Cancer (AML) in the year 2006 and underwent treatment at CMC Hospital in Vellore for over 6 months. After 3 phases of intense Chemotherapy, Autologous Bone Marrow transplant was done and he attained full remission towards the end of 2006. Rajesh comes from a middle class family and this treatment drained out the resources of the family, including his father’s retirement benefits. Rajesh does not have any siblings to whom he can look for support. However, being the positive and confident person that he is, he did not give up hope. He was back at work and was looking forward to rebuilding a future for his family.


Unfortunately, towards the end of November this year he had a relapse of the disease and is back in CMC Vellore for treatment. Since it is a relapse, he has to undergo a more aggressive treatment coupled with Bone Marrow Transplant (BMT) of a different kind compared to what was done earlier. It may even be necessary to take Rajesh to the US for this BMT as some types of BMT are not done in India. The estimated cost of such a treatment is likely to be around $ 500,000 or 2 crores in Indian Rupees. The family is shattered with no means or ability to raise such funds.


Rajesh is aged 41, has a wife and two kids (aged 7 & 1) and a father aged 70. The family is completely dependent on Rajesh. Those who have been fortunate to know Rajesh would strongly agree that no stone should be left unturned to help this wonderful human being. Rajesh is a person who helped people even if he did not know them very well. He was there for anyone in need. During his first chemo treatment in CMC Vellore, we have seen him going around the cancer ward, consoling other patients and asking them to remain positive. That’s the way Rajesh is!

Friends, such a humane person needs help from all of us now. Though Rajesh has said that he does not want people to go through trouble to generate funds for his treatment, we will be failing in our duty if we don’t do so.

Any contribution big or small will go a long way in meeting the treatment costs. Please consider this appeal in a humane manner and help a family going through terrible times.

To contribute in the U.S., please mail a check payable to Rajesh Ramanathan to
11313 Country Oaks Circle
Glen Allen, VA 23059

The contribution to the above is not tax-deductible but we are exploring options to work with a non-profit organization. When that happens, your contribution may be tax-deductible.

Contributions can be sent in the name of R. Rajesh.

1.Account No. NRE-SB 20070004
2.Account No. SB 4826

SWIFT code: CSYBIN55
IFSC Code: CSBK0000001

Both accounts are with
Catholic Syrian Bank
88/2 Ida Scudder Road
Opp. CMC Hospital
Vellore, Tamil Nadu. 632004
India.


If you are sending money from your NRE account in India or transferring from overseas, use the first account. If you are transferring from a local account in India, please use the second account.

Another account that you can send contributions is in the name of Rajesh Ramanathan to

State bank of Travancore , Vellore Branch,
SB AC.NO: 67050946813
Swift No.SBTRINBB405

Cash contributions can be handed over to the person through whom you received this appeal. He/She will ensure that amounts collected are converted into a draft and sent to Rajesh.

Stand up and be counted for a cause!

Sincerely,
Friends of Rajesh.