August 10, 2007

 

Aditya has been complaining of more pain in the last two days. Pain all over his body. Reason again is due to the Leukemia. Since nothing can be done on that front , the only way to keep him comfortable is to increase the pain medication, which only results in more sleep, with very less interaction with us. His liver has started taking a toll,leading to a condition like Jaundice,eyes are very yellow. But again nothing much can be done due to Leukemia. His oxgen levels are ok, but heart rates are up again. Desparately wish ,we could do something to help him out...

 

Thank you for the continued positive energy and healing thought.

 

August 7, 2007

 

Again very sleepy. A lot of drugs he is on can  make him very tired and drained out. Though it is good that he sleeps, he is awake for only a little while... But I guess sleep is the only way that the body compensates for the lost energy. Aditya has got attached to a child life specialist who has been singing to him for the past six months, whether we are in the clinc or when admitted. So yesterday when he woke up, he had asked for her. He was happy to see her and she sang his favourite songs. These little litttle episodes makes us happy,especially when he wants something. Oxygen level was brought down a bit to see if he is tolerating itwell, so far so good.

Other problems on hand, like fluid retention,higher heart rates, high liver values,lung infection is haunting us... Of course the biggest that is looming is his Cancer...  Well, we will take one step at a time. Like the Doctor mentioned yesterday, we will be guided by Aditya, his indications on discomfort will tell us how to proceed...

 

August 5, 2007

 

A lot sleepy today. But more alert and responsive when awake. A lot of friends and family visited in the last couple of days. Aditya was happy to see them. Has started drinking Milk from today.  Today the fluid retention was low and he doesnt look all that puffed up. His belly is still bloated but again better than what it has been in days... His heart rates and oxygen levels were OK.

 

Thank you all for the Positive engery and healing thoughts...

 

August 4, 2007

Same as yesterday. Some rocky times, with high heart rates. Had to get more oxygen and sedation. He is having a lot of fluid retention in his body so medicines are being given to get that out as and when the fluid builds up,which in turn has some side effects for which again medicines are being given. It is going crazy really, so many complications, everyday a new problem in his health.His condition is still critical but he is talking again,opening his eyes again and that is what is most important to us now, we have to live by the moment. He is thirsty wants more water and juice to drink... 

 

Seeing your notes brought tears... There are so many of you praying for Aditya, so many... Thank you is too small a word to express our gratitute. Especially when every ounce of our strength, sanity is drained out, your healing and supporting messages have become our strength again. (We try reading aloud sitting beside him)...   

 

August 3, 2007

Yesterday night was rocky again but he settled down with more doses of sedation and oxygen... This morning he woke up and asked for water to drink. When the doctor asked him how he was doing, he said better inspite of being heavily sedated... I really dont know what difference he knows between better,fine, and not fine... But that is the word he used! 

 

Thank you all for being with us through our most difficult times...  

 

 

August 2, 2007

Aditya is still holding up.....He is still the same but is responding a little bit to our voices and other stimulants. Not able to open his eyes. Please keep praying......We are hoping again.... 

 

August 1, 2007

We lost most of the ground we covered over last few days. Since this afternoon Aditya's condition became very critical.. His breathing became very laboured with intermittent gasps for breath inspite of the oxygen. Heart rates shot up again. As wished by Aditya we did not take him to the ICU and are trying to keep him calm with whatever is possible in the room... He is currently lying unconscious waiting for the inevitable....

 

We still request you all to keep praying...

l

July 31, 2007

Aditya's is on oxygen throughout, breathing is little better compared to yesterday. Today his blood presure and heart rate shot up again... His belly is looking like a balloon, we are really worried about it. The Xray showed lots of Air and bowel... He is on a whole lot of laxatives to help him ease out. The blown stomach is also adding to his laboured breathing. Speech is still slurry. They have added him  on one more antibiotic as they saw one more organism growing in the blood culture. The list just goes on and on... Whoever coined 'Health is Wealth' is cent percent correct... Only when we see Aditya (and children like him who have battled this disease so bravely) sufferring do we appreciate how healthy we are...

 

Thank you all for sending us positive energy and healing thoughts...   

 

July 30, 2007

Aditya's heart rate and blood pressure has trotted to normal miraculously......but breathing is still rough, and is on oxygen throughout. By God's grace and everybody's prayers he is still in the oncology room...  His stomach is bloated up a lot and so now investigations are on... He is sleeping thru out the day with morphine going round the clock, tries to talk but his speech is slurry,sometimes incoherent... Sometimes with such high infections in the blood, this seems to be possible.  

Today too they talked to us about the plan if breathing deteriorates. We are hoping we will not reach that state this time. 

But as one of the Dr. says...."Even if you dodge this bullet, there is one in the next chamber". But we are hoping that GOD removes all the bullets in His own way. Thanks to all your prayers and Him,it has given Aditya another day of life.

 

 

 

July 24, 2007

Aditya's condition remains the same. No change in his Leukemia, or Pneumonia... His appettite was getting slightly better but we are back to square one again. More nausea and vomiting.... God only knows what the future holds for our little Aditya... How long he will suffer ? Its going to be a year since he was diagonsed with relapse and we have still not found any solution... But we continue to hope and pray that the alternate meds helps him get better, for the simple reason that Aditya is still fighting to live amidst all the physical pain and sufferring...

 

Thank you all for writing to us via mails/guestbook, it keeps us going and think positive come what may... To know that there are so many people who automatically include Aditya in their prayers when they go to places of worship or perform any pooja is really touching... Thanks again... 

 

July 21, 2007  - APPEAL to SAVE VINAY

There is a Bone Marrow Drive at

- SV Temple in Pittsburgh on 21st July and 22nd July 10am to 5 pm

- Hindu Jain temple in Pittsburgh on 28th July and 29th July

to help Vinay, a young physician of Indian Origin at BOSTON. Please read the appeal at http://www.helpvinay.org/dp/index.php?q=node/5 and view the video at http://cbs5.com/local/local_story_194214917.html.

Visit www.HelpVinay.org to get more details.

 

Though this is organised by family, friends and well wishers of Vinay, It is going to improve the chances of thousands of blood cancer patients, waiting to get a bone marrow match.

 

All you need to do in this drive is to give your saliva sample....nothing else.

In case you are a match to someone at some point of time in the future, you will be asked to donate some amount of your blood. It has got nothing to do with your Bone. You will have your options at that time. Given that, if you are a match you have the joy of giving someone his life, I am sure you wouldnt want to opt out. Visit http://www.helpvinay.org/dp/index.php?q=node/18 to understand Bone Marrow donation.

 

Please fwd this mail and the attachment, to your friends and request them to get registered. I hope you would be participating as well. 

 

July 16, 2007

I really didn't know what to update since everything remains status quo... The only new thing going on is that we have started an alternate medicine... We are really not sure if its too late to start or what, but we have started and also dont know whether this is going to work out, but we are still hoping Aditya gets to feel better in terms of his general health at least. His nausea is better and now he is tolerating sips of juice and milk, besides the oral medicines (since he has plenty of medicines to swallow now). Have to slowly make him eat solid food, a task which both Aditya and me dread,as we fight a lot :-)

Still praying and hoping for some brighter days with Aditya...  Thank you all for the wishes and prayers...

 

July 09, 2007

Aditya's health status remains the same (fevers every six hours,lung infection, sleepy most of the day), except for the nausea. Nausea seems to be getting slightly better, the doctors have a cocktail of medicines which cover him round the clock. Though the appettite is not great, at least he is tolerating the oral medicines and occasionaly eat a bit.

We took Aditya to Washington DC for a darshan and blessing by Mata Amritanandamayi during the weekend!  Yes, it was a risky thing to do, but when you have reached a point beyond control, we take bold steps which under normal circumstances is considered dangerous.... It is sheer miracle that Aditya's little body withstood the long travel.  He infact enjoyed being away from the hospital radius :)

Thank you for being patient with our 'once a week' updates... And thank you for the continued support and prayers...

 

July 02, 2007

Sincere apologies for delayed updates... Needless to say its quite hectic, especially with Aditya's vomiting on the rise... He is unable to tolerate the oral medicines too.. We are trying different anti-nausea medicines, but in vain.  Will have to wait and watch for a couple of days, else try something new. He had to go to clinic for transfusions both on Thursday and Friday.

Aditya is sleepy most of the day... We try to take him out for short drives in the car, which sometimes makes him cheerful :) We are desperately hoping to see some brighter days with Aditya.. Please pray for his good health and well being....

 

June 27, 2007

We had to be admitted in the hospital for three days.. Saturday was meant to be a routine blood transfusion day but one of the blood cultures drawn a day before showed some positive infection, so the doctors decided to admit him with some more antibiotics.. On Monday evening we were discharged back home with the additional antibiotic. Otherwise things are the same out here. Aditya is sleepy and has severe vomiting episodes. Watches some Pokemon and Thomas cds when he feels like it, otherwise sleeps thru a lot. Unfortunately his appettite is really poor (getting in sips of juice is also becoming a big task these days), so grandma is just waiting to make his favourite dishes for him to be able to tolerate food.

Thank you all for the continued prayers and support...

June 21, 2007

Its been real busy at home.  I appreciate the Nurse services even more now :) Aditya was excited to come home... His fevers continue to be the same(6 hrly) and so are his activity levels... Sleeps most through the day and is OK for a while in the evening watching TV, and sometimes tries to play games.. 

Yesterday was clinic visit as Aditya needed some tranfusions. We asked the Doctor if we could give some oral palliatvie chemo drug just to keep his Leukemia at bay, but he felt that Aditya will get more sicker, so we decided against it.  We take it one day at a time, cherishing every moment of happiness with him, not thinking about tomorrow... God give us more and more strength to handle this.

As ever your prayers and best wishes for Aditya is keeping us strong. Thank you all...

 

June 18, 2007

Most likely we would be going home today. Aditya's fevers are there every six hours. His lungs look pretty much the same not better but not worse too (save us for small mercies). He is awake for a while and watches TV and did some sticking on the Thomas book... We pray to God to give us the strength to handle this "Home Care" appropriately... Its going to be busy, but we will definitely keep updating about Aditya's well being as much as possible.

Thank you all for the continued support and prayers...

 

June 14, 2007

Its status quo. The only new thing that is going on is thinking about taking Aditya home under hospice care services, early next week. This way he will get to be at home with oncall medical support round the clock. We are talking to various people to understand how it will work. We will visit the clinic twice a week for transfusions and physical examination by the Doctors. A little nervous about taking care of him all by ourselves but am sure it will tide over eventually, if its too overwhelming we can always bring him back to the hospital.

Aditya is awake for a while these days talking and watching TV... We really hope taking him home will make a big difference for him in many ways.   

June 11, 2007

Aditya's fevers are pretty much the same. They have added one more anti-fungal drug. His activity level is low as he sleeps most of the day due to Morphine (the pain killer) given round the clock.  

Thanks for the encouraging words and prayers.  It definitely keeps us strong during these tough times...

 

June 8, 2007

Nothing much could be found from the biopsy. To get a better understanding of whats going on in there, an Open Lung Biopsy needs to be done, a procedure which the Docs do not want Aditya to go through in his current state. So currently monitoring him closely (in terms of his breathing getting worse or dropping of other vital signs), with the various antibiotics to cover all possible infection it could be in the lungs... The Docs decided to take him off the study drug too since his liver numbers had started to climb up and also the fact that it is not helping his bone marrow recover in anyway.

Aditya is sleeping most of the day. Seems very tired, occasionally wakes up to watch TV. I dont know what to write more... We get a feeling that Aditya is in the battlefield without any armour...

Please continue your prayers for this brave little boy. 

June 5, 2007

The biopsy test went OK yesterday. Aditya came out with chills, and high fever but after giving some medication he settled down. He has been sleeping most of the time, his little body is too exhausted with repeated poking and anesthesia. We should get some initial result by end of today.

Thank you all for the continued support and prayers.  

June 2, 2007

The doctors want biopsy to be done to find out the type of infection in the lungs. From the scan its most likely a fungal infection, a condition difficult to treat, especially in Aditya's case as he does not have any white blood cells of his own to fight it out.  The biopsy will be done on Monday morning. 

Meanwhile Aditya's fevers are getting more frequent...  He sleeps most through the day, is awake and watching TV only when the fevers come down a bit and the pain is reduced, which is once or twice in a day. Needless to say appetite is nil... He is on anti-fungal medicines going in round the clock. 

Just clinging, with all our energy, to the two words: faith and hope... Thanks for your prayers and encouraging messages..

June 1, 2007

Its not good again... Aditya has developed pneumonia. This was confimed yesterday with an X-ray followed by a CT scan. Today the pulmonologists will have a look at him and discuss the course of action. He has been complaining of some shoulder pain (left one) off and on, and his breathing was a little faster than the usual. Other than this, there has not been any other visible symptom.

Please pray for Aditya to cross yet another obstacle...
 

May 28, 2007

Sorry again for the silence.  The fevers are still there, infact quite higher. But yesterday and today Aditya was allowed to go home on a pass for few hours, this cheered him up. The liver also has settled down, its back to normal value.
So the better news is that, the doctors decided to restart his trial drug  today. This is a reduced dose, to make sure his kidneys and liver is not affected too much. We are not sure what to make of this decision, but definitely feel good about this.

He is not into walking still. Finds difficulty in sitting too these days, hoping some physiotherapy will help him.

Thank you all so much for the messages and prayers. Definitely gives us more strength to hope further.....  

 

May 24, 2007

Fevers are more frequent and higher now. All the tests(blood cultures) come out negative... He is on all kinds of antibiotics to cover the high fevers. The ultrasound of the liver looked OK, no abnormalities there but the high liver levels are disturbing. Hoping this can be resolved soon.  

We are still not sure on the direction we need to take for his leukemia. Doctors do not have much to say... Feels like a dark cloud that does not want to budge. Kumar and me are keeping strong only because of Aditya's cheerful chatter and hearty smile... Somewhere, somewhere there is a solution that will bring him out of this obstacle is what we keep praying and hoping.
We thank you all for the continued support and prayers...

 

May 22, 2007

We still in the hospital. Fevers are off and on. Till now all the tests are clear indicating no infections, so the fevers are being attributed to Leukemia. The Liver levels look high so an ultrasound will be done to find any abnormality. Kidney levels are back to normal. No progress in walking. He wears the braces off and on.

Thank you all for your good wishes and prayers...!  

May 18, 2007

Thank you all for the wishes. I read out every wish to him and he was so happy to receive so many messages. Aditya had an excellent birthday. Family and friends made the birthday a big success. Aditya got surprise gifts from the hospital too. He invited his doctor to the party and was happy to see the doctor!

The news on his marrow is not good. The study drug didnt serve the purpose. The marrow is packed with leukemia cells.  The doctor feels it might not be good idea to continue the drug since his liver and kidneys were getting affected too.  So again we are at a point not knowing which way to go (not that there are many options)....

So after all the fun we are back at the hospital for fevers since yesterday evening. But we dont mind it since all that was important was that he had a fun filled day. It was exhausting for him, but he enjoyed every bit of his birthday.

Thank you all for your prayers and wishes and request you all to continue the prayers as we still donot want to loose HOPE..... 

Here are a couple of his pictures from the birthday...

 

May 13, 2007

Sorry for not updating. Friday and Saturday was busy with visits to the hospital. The doctors felt that more than physiotherapy a braces for his spine (basically,a belt around his hip) will help his current condition (the compression of spine). So on Friday they had to take measurements to make a size which fits him correctly.  It was also found that he was dehydrated and his kidneys looked a little strained. On saturday we again had to go to the hospital for some IV fluids and repeat the tests to check his dehydration and kidney levels.

Tomorrow is end of the first phase of the SAHA (the trial drug) drugs, Day 28, so a bone marrow test is scheduled. This time we will not be in for any surprises as we do know that the cancer is not cleared as yet. The blood tests indicate that the cancer cells are present . Hopefully, with all fingers crossed,  the % is decreased that is what we can least expect now....

Aditya is all excited about his birthday on 16th May . He is making big plans to call lots of people, but sadly we cannot due to his counts being so low. To cheer him up we do plan to have a cake cutting with few family members and friends.

May 08, 2007

Yesterday was a long tiring day at the MRI. They usually sedate for the MRIs as you need to be really still for like 45 mins. They did a bedside sedation first but Aditya got up in 20 mins. So they had to again do the MRI under General Anesthesia. We got back to the room at 3pm (was there since 7AM!).  He was totally exhausted and slept the whole day.

The doctors said that it showed a compression of the spine, and this could be due to a couple of reasons : He was on heavy doses of steriods for 6 weeks (thanks to the TB meningitis) and secondly the meningitis itself can cause a situation like this. As he is young it may resolve on its own.

Will be discharged this evening, with visits to the clinics as usual.  We will be visitng the physical therapists twice a week to help him walk. Aditya is very excited to be going home :)

Thank you all for your support and prayers.

 

May 05, 2007

The bone scan and the xrays showed some problem in the spine. Doctors are not sure what it is and so a MRI scan has been scheduled for Monday morning, to get a clear picture of the problem. Well all we want is that its something that can be resolved without too much of pain and sufferring. The physiotherpists are on and are trying to help out...

As usual keeping fingers crossed with prayers.  Other than that Aditya's fevers have come down and he is cheerful and active.

Please continue to pray for him....

May 03, 2007

It was found that Aditya has a Urinary infection and most likely this is the cause of his fevers. He is otherwise active and cheerful. His appetite and vomiting are still bad... The doctors are concerned about him not able to walk still. So a couple of x-rays have been taken will know the results 2moro.  Also the neurologists were asked to look at him to see if it has anything to do with the neuropathy pain etc... Aditya has something or the other going on to keep all of us(including the doctors :) ) concerned isnt it?

Please continue your prayers for this little boy... 

May 01, 2007

We are back in the hospital. Aditya had fever yesterday night and so is admitted. He is on regular antibiotics.  He was upset about coming here, but hopefully we should be out sooner this time :-) 

April 28, 2007

Aditya is fine, happy to be home and enjoying playing with his toys and watching TV. His appetite is still low and needs a lot of coaxing to make him eat bites of food. Yesterday's clinic visit was OK. Monday will be along day at the clinic as they want to take a whole lot of blood tests at various intervals before and after he takes the medicine , as a part of the research protocol. We are still working on his walking...

Thank you all for the prayers and support.

April 25, 2007

Been to theclinic on Monday and today and because of him not eating and drinking enuf, he was dehydrated so some IV fluids was given. He needs to drink plenty... He is still not able to walk, cries a lot when he stands, on Friday physiotherapist would help us out!!! Though his counts and are low ... Doctors havent commented about the medicine working yet, guess anything can be said only after the bone marrow test. .

Thank you ever for praying for Aditya. As mentioned earlier, we are just taking it one day at a time, not thinking about what lies ahead...

April 21, 2007

Sorry for not being to update for a while. Aditya has been taking the new trial drugs, so far he is tolerating it OK. We were discharged on Thursday evening!! Aditya is very excited to be home. His fevers have come down. Except for an occasional stomach ache, he is Ok. He is finding it difficult to walk though, so we are motivating and trying to make him walk. Hope he is able to stay for a while without more hiccups... We will be going to the clinic on Monday to check his counts as usual.

With renewed energy and belief we are continuing to hope for the best....Thanks to each and everyone for continuing to keep aditya in your thoughts.

April 16, 2007

Good news... Aditya has been accepted to be part of the study. They are going to start the drug (its called SAHA)  tomorrow morning. Its an oral drug. Two capsules a day for 28 days.... Weekend was like walking on a tight rope but glad that it went of uneventful. Though he still continues to have fevers every 6hrs, he is active and cheerful....

On a lighter note, I was trying to teach him about 'An apple a day keeps the doctor away'....  And when I asked him to repeat he says 'An apple a day keeps the doctor HEALTHY' .... True , the doctors need to be healthy to take care of him......

Today's White counts (WBC) was 13000! thank God that its reducing. At this point, we take it one day at a time not thinking what the future holds for us... Thank you all for the continued prayers....

April 14, 2007

What do we say? Strange things happened yesterday. As i mentioned in yesterday's update that his white counts have been consistently going higer and higher for the past one week, when suddenly it dropped  to a 24000 yesterday!! It is such a big relief... Though the doctors say they have seen such trends, to us its only a miracle because of all of you out there praying for him with all your might. So yesterday Dr. had discussions with the study group and they have agreed to start him on the trial drug after all!!! But on certain conditions, he needs to be off anibiotics for 48hrs, the blood cultures shouldn't grow anything,his white counts continue to go down etc...  Today his counts are 21K... KEEPING FINGERS CROSSED... This is just like being on a roller coaster ride...

Next 48hrs are critical...Hopefully his condition stays stable and he is able to get into the study drug eventually. God give Aditya lots of strength for yet another battle to be won.... 

Your prayers are working, please keep them going...

April 13, 2007

We have some bad news... Aditya's leukemia is manifesting like a wildfire. His total white counts (WBC) is 60,000 .... In this condition the trial drug is also being stalled. As this drug is no magic bullet that will help him in the current situation.  The suggestion is to take him home with some gentle oral chemo drug for as long as he can withstand.... Today the whole group will be meeting to suggest  how to proceed....

All  though the little boy has been bravely fighting out every battle with all his might he has been unlucky whenever some hope is there. This has been consistently happenning... We dont know what to do... The whole night we have been breaking our heads and still trying to grasp hold of the situation...  Since yesterday he has fevers again we dont know if this is due to some infection or  because of leukemia itself...

Please continue to keep this little wonder in your prayers....

April 10, 2007

Aditya is getting better. Yesterday's xray showed improvement in the belly so he was allowed  to drink clear liquids (apple juice, water).  Tomorrow one more xray will be taken to see if  he can start eating... Also, the plan is  to start his phase 1 trial drug next Monday. 

As ever please continue to keep aditya in your prayers and pray that this  drug works for him.

 

April 05, 2007

Aditya is slowly getting better. Yesterday's xray showed improvement in the belly.  He is not allowed to eat still. If everything  goes fine he would be allowed to eat from saturday or Monday (they usually wait for 7 days before the child can eat, but in his case they want to be extra cautious because of his counts being so low). Its tough to keep giving evasive answers when he keeps asking for something to eat...

Hopefully (with a million fingers crossed) they will be able to start him on a Phase I trail next week. 

Thank you all so much for the support in the past days. We are just living and continuing our efforts only because of  so many  prayers  and good wishes .

 

April 03, 2007

Aditya is back in "8North", to a normal ward from the ICU. His fevers are getting better. His belly remains in the same state, which is good as it is not worsening.
Regarding his Leukemia, we are checking to see if we can put him on a Phase 1 trial drug. It would mean that he needs to be on a drug about which nothing is known. But no decisions yet. Adi's belly needs to be better before anything else is done.

April 01, 2007

 Adi is back in the hospital. He developed fever yesterday and also complained of pain in the abdomen. We took him to ER and the CT shows "pneumatosis intestinalis", a complication in the intestine. They have stopped everything by mouth and have kept him under observation at PICU, as it can get critical rapidly. As of now he is stable and active with fever spikes though.

We got the BMA results just now and it is terrible. He has 90% blasts(leukemic cells) in it. The last round of chemotherapy has not done anything to him. We are just stuck now as we donno what else can be done. It has become complex with his intestinal complications.  He is severely neutropenic and his WBC is only 700 with blasts.
We are stoic and composing ourselves. Praying GOD to give us strength to handle all these.

March 30, 2007

We are yet to get the results. Should  be getting it on Monday when we go to the clinic. Please continue to pray...
 
Aditya tolerated the procedure well and got lots of goodies for being a good boy during the procedure. They have a treasure chest for kids going thru the bone marrow tests, from which they get to pick anything that fancies them. 

March 28, 2007

On Thursday morning at 8:30 AM ET (6:00 pm IST), they will be doing the Bone Marrow Test. This is THE Acid test......everything rides on the results of this one test......Please we beseech all of you, let us all pray in unison with all our hearts to the Lord, that we get good results from this test and that we may proceed with the Cord Blood Transplant as soon as possible.   That is our goal and I know that we can do this.....Let us all bear arms like Arjuna and go to war on this Cancerous leukemia.......our armaments are our love, sincere prayers and faith in the Lord.....Please send all your positive energy to Aditya..........we can make miracles happen with our Faith and prayers.........
 
March 26, 2007
Adi is doing fine....He is generally active watching TV. He is eating a lot, due to the steroids, and keeps his Mom busy.
We have been visiting the clinic on Mondays and Thursdays. He has been receiving blood transfusions in each of his visit as his Hb and platelets are low.
Aditya's WBC is recovering. It has to be seen how much of it are good cells....
His Bone Marrow Aspiration has been scheduled for this Thursday, March 29th, 8:30 am ET. This will indicate the status of his cancer. Hoping to see a miracle and find him in remission (No cancer cells).
Please Pray for Adi, esplly on Thursday.

March 19, 2007

We are sorry that we didnt update the page for a while.......
Adi got discharged as planned on 14th. It was a big relief and a great feeling to be back at home. Our body refused to do anything and was craving for the sleep that we missed for several months.
We need to keep going to the clinic once every 2 days. We went to the clinic on Friday, 16th, to get his blood work done. His WBC was only 300 and platelets were very low, due to the chemo, as expected. He got platelet infusion. We went to the clinic today also. His WBC is only 200 and platelets were very low. Got another platelet infusion. We are just praying and hoping that he doesnt catch any infection at such a low WBC. It should start getting better by next week. Once his counts get better they will decide on doing a BM test to see the status of his disease.
Adi is very happy to be at home. Slowly he is gaining some strength. he is able to walk a little bit with our support. Hope this stay at home does lots of good for him.

March 14, 2007

Yesterday and the day before we were allowed to go home for a while on a pass!!! This was really exciting, esp as this is after three looooonnng months :) Aditya is very happy to be at home eating his favourite hot DOSA.. (this is his current favourite food). If everything is fine we will be discharged today and would be coming to the clinic every alternate day or if there is any issue.  They took a CT scan of his head day before sterday and the neuro docs felt that everything looks good. His counts are low at 500 as expected. They will plan out the BM test once his counts start recovering.
We are hoping that we will get to stay at home for a while this time. Praying day in and out that ONLY GOOD CELLS GROW... Aditya is more cheerful and smiling these days  (what we were longing for in a long time) .

March 10, 2007

Today is Day 5 and also the last day of the chemo.  Aditya is vomiting and is more sluggish and drowsy but these are the side effects of one of the drugs, IFOSFAMIDE (he is getting a combination of ETOPOSIDE and IFOSFAMIDE). God give Aditya lots of strength to pull through this like he did with earlier chemo treatment.  
 
THIS IS IT! THIS ONE SHOULD WORK AND TAKE HIM TO TRANSPLANT. In the next two weeks his blood counts would dip and again start recovering and thats when the Bone Marrow will be tested. This is going to be the toughest and most anxious waiting period...
 
Thank you so much for praying and also giving us immense support. Please continue your prayers. 

March 6, 2007

Doctors after lots of discussions, brainstorming sessions and consultation have decided to put him on a couple of drugs combination that he has not had for a long time . They are going to start the chemo today.  The chemo will go on for 5 days. The side effects of these drugs are quite severe. God give aditya lots of strength to pull through this like he did with earlier chemo treatment.
 
This is like a last ditch attempt. We know that all of you are praying for Aditya but we are so desparate that we again request each and everyone who sees this update to PRAY for Aditya's good health. Its only because of collective prayers that Aditya has survived six rounds of chemo so far. So please continue....
 

March 3, 2007

Today was an important day.
 
First thing, we took the bold step of taking Aditya to the temple in Pittsburgh, with due precautions. Drs were kind enough to give us a 4 hr pass to move out of the unit. Thanx to Sangeetha's Aunt and cousin, we went to Balaji temple and Shirdi Sai Mandir here in pittsburgh. We wanted to literally leave it to GOD to let things happen the way HE wants. Adi really enjoyed the trip to the temple though very exhausted. This is the first time he is moving out after he came to Pittsburgh in Nov 2006.
 
Second,  we had a very frank talk with the Dr. and clearly conveyed our intentions to fight it out and not giveup, for we are sure that's what Adi is and loves. Dr. did explain the obvious risks involved but nevertheless we ALL(incl. the Dr.) decided that Adi deserves another try. The drug combination is yet to be decided and is going to be really challenging. The fact that Adi has been exposed to almost all drugs makes it difficult. Chemo is likely to start early next week.
 
Third, we have a wonderful friend from the Pittsburgh Indian community by name Shree who totally surprised Adi today. In one of her earlier meets with Aditya, he demanded 2 cakes from her. He had given her complete specs. Little did we know that she took it so seriously. Shree (in Winnie the Pooh costume) and her husband Srikanth landed up today with 2 cakes exact as per Adi's specs, with balloons and all other B'day celebration kit. They gave a surprise B'day party for Adi. We have never seen Adi so excited. He was truly elated and enjoyed every bit of it. Thanx Shrees for giving Adi a wonderful day. We are sure he will have another wonderful day on his Birthday, May 16.
 
After all the turmoil last few days, now we are in the state as Arjuna after he realised Bhagawat Gita. Ready to fight...................
With all your prayers and blessings, ADI will win this fight for sure........Keep Praying..........

March 1, 2007

We got real bad news yesterday. Aditya has relapsed again. His bone marrow showed a  43% cancer cells. Doctors feel that no more conventional chemotherapy is going to help him. Though they are trying to work out to see if there is anything else that can be done, but they also feel there is no use putting the child through more and more torture.
 
We are yet to accept this shock. No idea what we are going to do next. We are shatterred... Just when we thought he had got over the worst, that more bad news was waiting right there for us. How can we accept defeat after coming so far?  Oh God this is the worst punishment any parent can go through...
 
 

February 27, 2007

Aditya's surgery was successful by God's grace and everybody's prayers. He was brought back to the ICU at 5pm . If everything is well with him they will move him to the regular room tomorrow.  He got up in between to drink some water but is sleeping mostly, he is very exhausted!
 
The BMA was also done today and should get the results in a couple of days. Please pray that he continues to be in remission. Hopefully Aditya gets into better health from here on without any more hiccups.
 
Please continue to pray.... 

February 26, 2007

It has been decided to place an internal shunt inside the head for Aditya tomorrow morning. Time is not yet known. Docs feel that this will be a good solution in the long run.... Its called Ventriculo-Peritoneal Shunt (VP shunt). The details of this is available in the following link http://www.sophysa.com/patient/hydrocephalus/hydrocephalus3.htm. This procedure has been necessiated by the Hydrocephallus condition, which itself has been a side effect of Meningitis.
They also plan to do a Bone Marrow Aspiration at the same time, to assess the status of his Bone Marrow. Please Pray that everything should go well.
Today he seems to be doing well compared to last few days. We are just hoping that it keeps improving over the days to come. His CSF parameters also seem to inch towards normal values. Hope Adi recovers from the surgery soon and gets better giving way to the BMT to start on.
 

 February 24, 2007

Aditya continues to be in the ICU. He has still not improved neurologically. He is still irritated, confused and disoriented. CT scan was done today which showed no change in the status of Hydrocephallus. Not sure what the issue is. Will be meeting the Neuro today to discuss. He coninues to be sedated. His WBC is 12,500.

February 21, 2007

Aditya's MRI showed Hydrocephallus, i.e. accumulation of Cerebero Spinal Fluid(CSF) due to blockages in CSF circulation. This is an effect of his meningitis. This seems to be the main cause for his mental status to go bad. They had to perform an emergency surgery to bypass a channel in the brain (Endoscopic third ventriculostomy ) and also put an external drain through which they can continue to drain the CSF in a controlled way. Neurosurgeon said the procedure went well. Adi is currently in ICU and will have to be here for few days I guess. He is conscious and his eyes are looking better. We will have to wait and watch the progress. According to the Neuro,  it shld show improvements in a day or two. Meanwhile, his spinal fluid parameters showed improvement from last weeks, which is good.  His WBC started recovering since  18th Feb, and is 6400 today. Keep praying folks we seem to be needing it in tons.

February 20, 2007

Aditya has not been doing good again.  Since saturday he seems to be confused and irritated. He keeps shouting and says 'no no no' as if someone is torturing him. WE ARE REALLY DISTURBED by this... He is on some pain killers and sedatives to calm him down. His blood pressures are also high constantly. Tomorrow's MRI scan of his head and spine and the spinal tap should give some light to this new behaviour... We haven't seen Aditya disoriented even during his anesthesias... This is really terrible. Aditya needs lots and lots of strenght to fight out of so many things, and God give us more patience to see all this. We ask all of you to pray pray pray... .

February 15, 2007

Sorry its been long since we updated about Aditya. The fevers are there at 6 hourly intervals. His headaches are slightly better and we dont have to use the pain killers round the clock .  Yesterday, after a long gap of 1.5 months he walked up to the playroom  and wanted to feed the fishes there. Since he is walking after a long time he was wobbly and needed help in walking...  The doctors have started him on a low fat diet...  He has started taking few spoons of low fat yoghurt and little skim milk..

His counts are still low (less than 100) from the chemo and may recover in a few days.  The plan is to do a spinal tap to see how the meningitis is. And later that week do a bone marrow test to his remission status. These two will decide the next course of Action.

We are still waiting to see the smile and spark back in him... Needless to say, please continue your prayers.

 

February 07, 2007

Aditya still remains the same. His headache has reduced though. Fever continues. No intake. Nutrition thro IV only. He had a spinal tap today and it seems to show some progress. If the trend continues, he might improve over next week.  Meanwhile his Chemo got over on 4th. As expected his blood counts have touched rock bottom. It is <100 now. It takes 2 weeks to start coming up. By then hope his infection remains in control. The horrible wait continues............Keep praying. We are longing to see a smile in him which we havent seen in a while.

February 01, 2007

The next round of chemo started yesterday as planned.  He spiked only once today. Steroids that go with the chemo is masking Adi's temperature as expected. Due to this it is going to be difficult to track his infection during this period. The chemo ends on Sunday and it will take few days for the body to get out of the steroids. We will then know the situation on the infection. Meanwhile, there is no significant info from the last spinal tap.

January 29, 2007

There is no change still in the condition. A spinal tap was done today. The preliminary look seems to be the same as last week. Further analysis is going on. Will know more details tomorrow. Meanwhile his next round of chemo might start on Wednesday.

January 26, 2007

There is no change in the health condition of Adi. He continues to spike every 8 hrs and is not active. He is always sleeping. 

We got Adi's final BM report and Flow cytometry report from the pathologist. It shows that the BM still has 5% or less leukemic cells in the BM. This is definitely not good, but far better than where we were(70%) before the last chemo therapy. Now it has become imperative that Adi needs to have one more round of chemo with Clofarabine. The hope is that it will certainly bring it to control this time also. Also hoping that all other impediments will move away. GOD seems to have a plan. We just have surrendered ourselves to HIM. Taking a day at a time.

January 24, 2007

 Aditya had his BMA and spinal tap today. The Good news is that his Bone Marrow is still good with no cancer cells. This is a big relief.

His Meningitis is still clueless though......  The  spinal tap still shows signs of significant infection but no clue on what is causing it. The plan now is to change few antibiotics and see what happens. 

January 22, 2007

 Situation is just the same. No improvement. They want to do a Spinal tap again to check it out tomorrow. They may do a BMA also. Praying for things to get better without torturing Adi anymore and get him back as an active Kid........

January 18, 2007

 We didnt write for a while as we didnt have any update. Aditya's mystery fever continues and not responding to even targeted antibiotic therapy. He had a spinal tap today which showed large number of WBCs indicating presence of infection. Not sure about what is causing it. He has been on precise antibiotic for the last one week. 2 more antibiotics have been added today. Will this be THE drug breaking his fever?? Poor guy is now getting 4 antibiotics. This will go on till the spinal fluid culture shows something definitive. CT scan of the brain seems normal as per the prelim report.

It's being a frustrating wait for us (and the Drs as well). Eagerly looking forward to see Adi get back to normal without fever. We are hoping his BM will cooperate till then. His marrow is presently good. His WBC was 7400 today. Something very good that we have not seen for a long time.

Keep praying for the poor thing and hoping he will be out of this mystery fever which is in its 3rd week. 

January 12, 2007

We atlast have the Good News!!!!!

Aditya is in REMISSION. The BM Analysis found <2% blasts(possibly). We are thankful to GOD and all of you. It is all your prayers and blessings that has miraculously brought him to life.

The plan now is to cure his meningitis and then do a BMA. Based on that they will either take him to transplant or give him another round of Clolar before transplant.

It is still a long way to go and is UpHill. But we will keep hoping....... 

January 11, 2007

Aditya continued to have more severe unexplained fevers in the last several days. Today, we atlast got  a reason for it. He has a confirmed bacterial Meningitis. It was confirmed in the analyis of the spinal fluid that was taken today. Aditya is really sick, not eating or drinking anything. Has severe headache, vomiting and keeps sleeping.

With the diagnosis today, we hope things shld get better in few days. He has been started on a new Antibiotic Zyvox. Will take 2 days to know the impact of the new drug.  Everyone is relieved to  know the cause atlast.

His WBC was 3300 today and seems to be in an upward trend. Good Job Marrow!! BM Aspiration was also performed today. We shld get the report tomorrow. We are really tense and are waiting to hear the GoodNews, "Aditya's Remission". Please keep praying.... he shld make it.

January 05, 2007

We got the feedback on Aditya's Bone Marrow (BM) today. It is sort of inconclusive but encouraging. Doctors feel that the sample was hypocellular (not enough cells) to analyse. Understandable considering his low WBC. Good thing is that they didnt see any definitive leukemic cells. This may imply that the new drug is possibly working. Doctors say they can conclusively say anything only when the BM recovers with his blood counts coming up to a decent level like >1500. At that point they would repeat a BM test to confirm that leukemic cells are not growing. 

His fever is still on at the same level and frequency. Expected to wean off when the counts improve. His WBC today was 200.

So we will have to wait for another week or so......

Thanx to GOD for giving us more chance to hope. To us it looks a sign of everyone's prayer in the process of getting answered.

Keep Praying folks........

January 03, 2007

The fever is still on.......

Aditya's Bone Marrow Aspiration and Biopsy has been scheduled for tomorrow morning. This is to assess the response to the chemotherapy "CLOLAR" he had a week back. As you all know, this is a crucial test whose result wil be a major decision point in Adi's life.

PLEASE PRAY as much as you can....We are very sure that GOD will heed to all these Prayers and Blessings to give us the result we are waiting to hear.....that Aditya is in REMISSION.

January 02, 2007

The fever is still on, peaking every 7 hrs. No clue yet. MRI was done today to rule out any complications due to Meningitis. Everything seems OK in MRI. His antibiotics is being tapered down and that is expected to resolve the fevers since it is now suspected to be Drug induced. His WBC is 500 today. Long way to go.

Wishing You all a very Happy New Year. We thank each one of you for the wonderful support and the prayers. That's what keeps us going. Keep Praying. Looking forward to better things this year.

December 29

Couple of days back, just when they were thinking of discharging him, he started having high fever again. His blood count, wbc,  had also dipped to almost NIL. He is being transfused with packed cells and platelets. He also gets GCSF for boosting his neutrophylls. His wbc today is 700. Should keep going up with GCSF. No clue on the cause for the fever. Blood cultures are not growing anything.  They will be switching antibiotics today. Hope that helps.......Meanwhile hoping and praying that the chemo is doing the job and will give us some good news when they do the test after 7 days.

December 25

Merry Christmas!!! to everyone. Aditya has been receiving sacks and sacks of Gifts in the last few days. We now have enuf stuff to run a Toy store. Thanx to everyone for the love and affection. It really keeps us going.

Aditya has no fever for the last 48 hrs. The antibiotics are still on and will complete the course for Meningitis. He is getting to be a bit active. His WBC is at 1800 now and is expected to start falling in the next few days. Today is the last dose of the new chemo for this cycle. His response to the drug will be checked after 10 days. Keep praying and it can cause miracle to happen. Hoping that the new year will start with a good news.

December 22

They did a spinal tap yesterday  and confirmed that his meningitis might be in control. It was confirmed that the CSF is free of Leukemia which is a relief. His headache has reduced though he has high spikes frequently. Aditya was looking better yesterday and was talking to us after few days. Due to the criticality of the situation, Drs have started him on the new chemo.  It is a 5 day course after which they will wait for a week or 10 days and check his marrow to see the response.

Please pray that this medicine shld do the trick and save Aditya.

December 20

The headache and fever has been diagnosed to be due to bacterial meningitis. This has caused the start of the new chemo to be on hold. They will wait for the symptoms of Meningitis to vanish before starting on the chemo. As of now he is on antibiotics for Meningitis. His headache and fever are on still.

It is yet another setback and a wait................GOD please save him.

December 19

The new Chemo cycle has not yet started as Aditya has severe persistent headache and mild grade fever.  He is totally down sleeping all the time. Got a head CT done today and things look fine. They are going to check his CNS later today to rule out any serious issues. Praying GOD that it shld be fine too. Hs chemo might start after these issues are resolved. We are hanging in there......Please keep praying for Adi.

December 14

Aditya's BMA results have come. It is devastating. His BMA shows 71% blast, up from 40% last time. His Leukemia has now become refractory, not responding to Chemo. One hope we have now is to try a new drug avbl in the market "Clolar". It has 30% success on refractory cases. They will start him on this tomorrow. Only GOD can save Aditya now................

December 11

Aditya's fever is under control. He is on antibiotics. Blood culture grew some bacteria. His count continues to be low at 300. Hb and Platelets have dropped since yesterday.  Aditya looks better compared to yeterday.

Regarding the results of BMA, the wait continues............I am told that the results wld be available only by Wednesday. Anxious moments continue......

December 10

Aditya is back in the hospital today evening with fever. His Total  WBC is only 200. He is on IV antibiotics as of now. This is sort of expected with the heavy chemo he has had last 2 weeks. It should start coming up this week. We are eagerly waiting to hear the prelim view on the BMA that was done on Friday. Praying God that he should have responded well.

Earlier today there was a Group prayer for Aditya, at the SV temple in Pittsburgh which included lots of children. Sangeetha was able to attend. A donation of approx $2000 was collected by the temple for Aditya.   Lots of people have volunteered to take care of our food and other logistics. We are so moved by  the support from the Pittsburgh community. Words cannot express our gratitude. With so many good souls pleading for Aditya's life, GOD needs to respond. We are sure HE will.

 December 7

Today is good news day!! Aditya is allowed to go home even though his WBC is only 800! At last after close to two weeks. Aditya was very excited and kept pestering us to go immediately. But since his platelets were low they wanted give them before we could leave .... We were able to leave only by 5.00 in the evening. On Friday 8th Decembter we will go back to the hospital for his bone marrow test. This is decide how well he has responded to the treatment so far. Please pray that he responds well and gets ready for the transplant soon!

 
December 5

Aditya is doing well and is cheerful. His stomach seems better and he is able to tolerate food. His no. of visits to the bathroom is coming down.

03-Dec-2006

Aditya's stomach is still the same though the watery stools have become a little semi solid. His total WBC counts have improved as compared to sterday and is at 1700. He was allowed to visit some activity in the playroom in our floor. He enjoyed and made some Souvenirs for himself. We had a couple of friends and family visiting us today and Aditya was very happy to see someone other than his parents!!!

Tomorrow we should be getting back all his test results related to his stomach and would know the reason for the same. He might be getting one more dose of chemo 2moro.

02-Dec-2006

His stomach is still the same with frequent visits to the bathroom. He wanted to watch videos capturing his pranks when he was 2-3yrs old. Today he smiled and was cheerful. This is the first day since coming to the US that Aditya was cheerful, it gave a lot of strength to see his smile. He was given some craftwork to do and he enjoyed doing the same. We made a mouse and also a beautiful hanger on the door knob. His apetite is better though everytime he eats his stomach is not able to tolerate and immediately needs to poop (as they call it here!!!),

Volunteers of the local VenkateswaraTemple came to know that we are here and called us up. Our phones kept ringing the whole day. One of them came over in the morning and took me to the temple and dropped me back. Had an excellent Dharshan, Later in the evening we got lots of food delivered to us from a house where they had satyanarayana pooja. It was so much that we have food for next few days. It feels so good to know that there are lots of people around here to support us.

01-Dec-2006

Aditya developed loose stools coupled with severe stomach pain. They have given the sample for plenty of tests.  His counts are still low though improving. At one point the pain was so severe that they had to give the pain killer with sedation. After that medicine he slept for a while.    

29-Nov-2006

Aditya has no fever and is afebrile now. His vital params are stable. Regarding the marrow, further analysis revised the estimate to 40% blasts. Of course, % doesnt matter once the disease has been noted. The torture has to be undergone. The chemo is going on. Aditya is totally dull and cranky, sleeping always. His total WBC is only 700 which is expected with this kind of chemo. He would continue to be in the hospital for lot more days...

With the help of our relatives around, we have settled down in the new place. We have taken up a room at Ronald Mcdonald's House. http://www.rmhcpgh.org/  for our living.

24-Nov-2006

Aditya's fever has come down and is stable.

We got the results of Bone Marrow exam. It was a bad news. His marrow showed 20% disease. Up from 2% few weeks back in India. We are devastated. The BMT plan has been kept on hold now. Starting tomorrow he is going to be on chemotherapy. Please pray for this poor guy.

23-Nov-2006

On Nov 21, 06 we arrived in Pitts at 2:00 pm after a 3 hour delay in NY JFK.  Aditya had developed a fever when we started from Mumbai. Soon after arriving at Pittsburgh, he had to be taken to the hospital on the Dr’s advice.  Dr. met us and started on Antibiotics. They also felt that he had become dehydrated and so put him on IV immediately. 

Yesterday the Doctor had a nice long chat with us and discussed the case and the method of treatment.  They took Aditya into the OR this morning for doing a spinal tap and the bone marrow test, for which he had to be on General Anesthesia.  We are anxiously awaiting the results. His temperature is showing a downward trend though he is no yet afebrile completely.

We are still catching up with our sleep….will write more later.

13-Nov-2006

Got the High resolution HLA typing and a prelim search was done. We still see 26 potential 6/6 matches.  There are quite a few 5/6 cord blood matches though no 6/6.  CHP has asked us to come over ASAP inorder to do Pre-transplant workup.

We have booked the tickets for 20th night from Mumbai to Pittsburgh. With the blessings and help of thousands of people, we are going to make this trip. We are confident that Aditya is going to be absolutely fine after that.

Aditya is enjoying his stay at home after the long stint in the hospital

05-Nov-2006

Couldnt get much time to update this page. Some quick highlights of last week below.

  • We got the BMA results on 31-Oct-2006. He still seem to be having 1% residual disease. Not a great news, but Drs feel it isnt too bad either. Drs at CMC feel that he is ready for transplant and has to be transplanted at the earliest. Awaiting the comments from CHP, pittsburgh
  • Went for VISA interview on 01Nov and got it. Aditya had to come with us as we didnt get a waiver for him. However our case was processed on a priority basis and didnt have to spend much time inside.
  • Aditya got discharged on 03Nov as Dr. at CMC wanted his treatment plan to be finalised by the Transplant center at CHP, pittsburgh before proceeding further. Based on the plan from CHP we will know when we need to travel and what treatment plan to undergo till then. Likely to be finalised by 8th Nov.
  • Aditya is stable and is gaining some strength

27-Oct-2006

  • DNA sample has reached UPMC and they have commenced the next process
  • Best news of all-Aditya's count has improved and he has been allowed to go home for two days. Great change for him and Geet
  • He has to get back on Monday morning for the scheduled bone marrow test. Please pray that we should hear the good news that he is in remission.

    26-Oct-2006

    Aditya is feeling much better. He has started having oral food and is moving around a bit. Doctors want to do his BMA soon to document remission. We are really looking forward to that as everything is pivoting arnd this. It might be done on monday, 30th.

    Meanwhile his DNA samples have been sent to CHP for High resolution HLA typing. Should have the results in a weeks's time I guess. Further plans will crystallise based on that.  As of now looks like we would be leaving for US by mid or end of Nov. 

    24-Oct-2006

    After extensive search, we have identified Childrens Hospital Pittsburgh for Aditya’s BMT based on the expertise and the cost. It is likely to cost between $225K - $325K. Hospital has agreed to start the treatment with $225K. 

    22-Oct-2006

    Friends, we apologise for not writing for a while. It has been very hectic on various accounts. Hospital had to be finalised, Had to plan for High resolution HLA typing and Aditya's health wasnt too good.

    Aditya completed his third round of chemo on 14th Oct 2006. This whole week is trying to recover out of the severe side effects... This round has made him really weak. Poor child is on TOTAL PARENTERAL NUTRITION (TPN) for the last three days as he is not able to eat anything by mouth due to severe mouth ulcer (which again is a side effect of chemo)...  

    11-Oct-2006

    Still finalising the Transplant Center. Should be freezing it by this Friday. Aditya is currently on the 3rd cycle (R2 arm) which started today. He had a new central line today. The earlier one got infected and led to a fever last week and hence was pulled out. GOD give him strength to withstand this and protect him.

    02-Oct-2006

    Got the Preliminary search report from NMDP today.  Aditya has 91 potential 6/6 matches.  Good news I guess, though it is only a Low resolution match.  Once the Transplant center is finalised the formal search with High resolution will start. Keep praying......