History

Wednesday, April 6, 2005 2:35 PM CDT

Day 130:

Varun continues to do well.
We now allow Varun to crawl on the carpet, which he loves very much - especially when either daddy or mommy joins in :-) Despite cleaning the carpet every day, our little one makes frequent stops during his crawling to pick the tiniest of particles off the carpet.
Fortunately, being the inquisitive kind of child he is, he studies closely every particle he picks before sending it to his mouth, giving us enough time to intervene on most occasions.

Varun's platelet is (hopefull) showing signs of stabilizing in the near future because the period between two successive platelet transfusions has increased from every 4-5 days to 8 days now. Once his body starts generating platelets on its own, Varun will need platelet transfusions less frequently. In the weeks immediately after the transplant, Varun was getting RBC transfusion every 7 days. This has improved over time and he now gets RBC transfusion every 16 days only.

The next big thing on Varun's schedule is a feeding tube insertion. This will require a surgical operation, for which we will be meeting with the pediatric surgeon end of this week. Dr K wants Varun to get a feeding tube to help him put on weight over the next year or two, but wants Varun's platelet to stabilize before the surgery takes place. Judging Varun's pre-transplant eating habits, Dr K thinks Varun may not gain much weight without the help of a feeding tube).

Day 131:

Just today Varun's lab results returned with his platelet showing the first (relatively) significant increase. 2 days ago his platelet was 23K, yesterday it was 13K and today it read 29K (he had last received platelet transfusion 10 days ago - the longest he has gone without one). We really hope this is a sign of Varun's body beginning to generate platelets on its own. Thank you for all your prayers and for the kind, encouraging messages you have been leaving on varun's website here.

Friday, March 25, 2005 11:46 PM CST

Day 119:

Its been a fairly long time since our last update. Varun had a few ups and downs during this period.
One day we noticed that varun's anterior fontanel (the soft spot on the head that may close as early as nine months of age or as late as two years)was a little raised (wasn't too obvious unless you looked closer). We guessed this was not a good sign and took varun to the clinic immediately- only to find that his BP was very high (140/96). Initially they wanted to get a cat-scan done, but Dr K. suggested that we watch the fontanel (and his bp) over the following 2 days and proceed with the cat-scan only if his bp continued to remain high.

Fortunately Varun's BP came down gradually, so that was a wise move (not to get the cat-scan done) . The fontanel also has sunk gradually and is pretty close to its normal size, though this took longer.

Secondly, Varun had a tough 2 weeks keeping things down. It all began when he started gagging on his food, only to throw up each time. We stopped his oral feeds after 2 days, but things got worse when he started to gag on his meds too. It didn't stop there - a day later we got really worried when the base color of his vomit turned red, triggering a flurry of email correspondences with Dr. K around 11pm. Dr. K assured us that this could be a case of gastritis.

A few meds have since been added to Varun's growing list. The first, Pantoprazole (IV med) didn't seem to help. 3 days later they added Megase (which helps to increase the appetite) to his list. Later tests revealed his Cortisol level (low cortisol levels can also cause vomiting) was almost zero, and yet another med hydrocortisone was added.He did throw up for another day or two, and then suddenly it stopped. Since then Varun has been eating (relatively) well, bringing back smiles on our faces. We are not sure which of those 3 meds really helped Varun, though we are leaning towards the second med.

Another good news is that Varun's fish test (indicating the percentage of donor cells) came back at 100 - in other words, all his cells are from the donor, which is really good to hear. We are awaiting the results of the last test(immune studies) from his 100-day evaluation, which might take another 2 weeks.

Varun is off the steroids(solumedrol) starting this week and hopefully this should help his blood pressure stay under control.

We are deeply saddened by the loss of little Sara (www.caringbridge.com/in/sara) and Deondra (www.caringbridge.com/nc/deondra) who left for heavenly abode in the past 2 weeks. Our heart goes out to their loved ones and we pray that God give them the strength to overcome their terrible loss.

Sunday, March 6, 2005 11:41 PM CST

Day 100!

Day 100 is probably a significant milestone. A number of tests are run to determine the status of the disease and also to evaluate the efects of high dose therapy on Varun's body.

Day 100 for Varun being a sunday, we will not get these tests started until tuesday. We hope to keep you posted as and when these results filter in. Please pray that everything goes well for Varun with these tests.

Varun's aunt Ashik visited us from Missouri this weekend. We had a good time with her, while her husband (KC) looked after their kids back in Rolla. Thank you Ashik for spending time with us, and you too KC for making it possible for ashik to visit us.

Earlier in the week Varun made his first long trip post-transplant when we visited the Charlotte INS office to get our fingerprinting done for our green card application. The 2 hour trip also worked out as a test-drive for Varun in anticipation of our long drive back to NH once we get the green signal from Dr. K. (Until then, post-transplant, Varun's longest trip has been the 6-mile drive to Duke Hospital from our apartment).

Also earlier in the week we saw Varun's platelet count dropping to dangerous levels: 3!! We have never seen his platelet dropping so low before. We probably should have taken the cue when we noticed a slight bleeding on the lips. We are so thankful that nothing serious happened while we were ignorant of his low count. (Such low counts could even cause internal bleeding that would never be visible externally). For 2 days both of us were in a state of shock and disbelief that our precious little one was put through a needlesss risk.

Please continue to pray for our little warriors here at Duke. Sara's condition continues to remain critical. Please pray for her and her wonderful parents. Again, Sara's website is www.caringbridge.com/in/sara.

bye.

Monday, February 28, 2005 11:55 PM CST

Day 94:

Varun's diarrhea stopped the day we discontinued his flu-preventive medicine.Dr K. decided to stop this medicine because no one who had visited the clinic 10 days earlier had reported flu-symptoms.

Varun's CMV came back negative for the 2nd straight week, a positive development indeed. We have now discontinued one of 2 CMV medications (ie., Ganciclovir). He will continue to stay on Forcarnet for a while though. Ganciclovir has the side-effect of suppressing the platelets in our body - now that Varun is off this medicine, we are hoping that his platelets will hold up longer - implying less frequent platelet infusions.

During Varun's last platelet infusion at the clinic, Ramya noticed that the volume being administered was higher than usual and brought this to the attention of Dr.K, who immediately agreed and directed the nurse to stop the infusion after 50ml (the platelet bag had a total of 60ml in it).
Later in the evening we received an email from Dr. K - she had checked back on Varun's recent lab visits and noticed that for some unknown reason, Varun was administered a lower dose of platelets during the last 3 infusions!! This has since been corrected.

Please continue to pray for little Sara (www.caringbridge.com/in/sara). She is still on the oscillator and continues to remain in a critical condition.I met her mom at the hospital 2 days ago - i can only imagine what sara's parents must be going through now. They have come from so far away (Scotland) in the hope of getting their daughter cured - only to find sara fighting for her dear life.

Monday, February 28, 2005 11:55 PM CST

Friday, February 18, 2005 2:42 PM CST

Varun is doing fairly ok, except for a few hiccups in the last 2 days.

He is not showing the same interest for food that he did until last week.He is also not drinking his formula neither through the sippy-cup nor the bottle. On Wednesday Dr. K gave us a large syringe - to feed him his formula with - and Varun seemed to like it!!

Unfortunately, a short while later he threw up everything he just had. On top of that, he started having diarrhea. We got worried and got in touch with the on-call doctor who suggested that we keep an eye on Varun's diarrhea for signs of blood. Additonally, we also got in touch with Dr. Kurtzberg .

A few emails back and forth with Dr. Kurtzberg (around 10 pm) reassured us that it probably was something that could wait till the next morning. Dr. K thought it could be due to either:
a bad night
or a little virus
or a little GVHD.

(did I mention in the past that her patients can always reach Dr. K by email, even at late hours? Dr. K is known to respond immediately).

When Varun and mom visited the clinic on tuesday, apparently another patient visiting the clinic had flu and was coughing. As a precaution, both mom and varun were asked to take a preventive flu medication (Rimantadine) for 2 weeks. One possible explanation for varun's sudden change could be this medicine - he has since experienced diarrhea for the rest of the day after taking this medicine daily now.

It is difficult to describe how we felt when, in the midst of throwing up and his incessant crying, he would look into our eyes. Our little warrior has been through so much in such a short period of time - and with God's blessings and all your prayers, Varun will definitely survive.

Varun's CMV turned negative this week, after staying positive for more than 3 weeks. We really hope his CMV continues to stay negative hereafter.

One recent morning we had the pleasant experience of watching Varun laughing in his sleep. He must have had a sweet dream, our little darling! A few moments later he opened his eyes and was all smiles, looking very very happy. Rarely have we seen varun waking up with a smile!!

We really appreciate the kind messages you have been leaving on this website. It is reassuring to know that he continues to remain in your prayers. Thank you to all from both of us. Please also pray for all the kids here who need your prayers - particularly Sara, a sweet little girl from Scotland, needs your prayers desperately. Please visit her website at www.caringbridge.com/in/sara

bye.

Monday, February 7, 2005 10:42 PM CST

AARRRRGHH!!
AAAAAAARRRRRRGGGGGHHHHH!!

Thats our little Varun venting his frustration each time we fail to live upto his expectations :-)

It could be for reasons as simple as turning our attention away from him for a brief moment or taking a few seconds longer between each mouthful while feeding him.
After more than 2 months of relative inactivity, our little fighter is beginning to become more active. He becomes noisy especially during feeding time -a very welcome development indeed!!

We apologize for not updating this site for more than 2 weeks. I must admit that it is not fair to keep Varun's well-wishers wondering what was going on with regards to Varun. He really keeps us busy, and we are beginning to love it - especially while changing the dressing on his central line (the lines through which he is administered medication). He is pretty strong and daddy has to pin him down to give mommy a chance to change the dressing.

A physical therapist visits Varun twice a week - hopefully very soon she can get him to exercise his muscles and do lot more than what he is currently willing to try.

He gets platelet transfusion every 4 days. His magnesium was well below cutoff for the most part of last week, resulting in many days of magnesium transfusion last week. This week the level has been fairly steady.
Varun's cell count has been pretty good, in the range of 10-13. For this reason, they have stopped the G-CSF med (which boosts his cell count) to allow varun's body to produce cells on its own.

(The Cell counts we have been reporting for Varun were actually aided by the G-CSF med�.it isn't a true reflection of the ability of varun's body to make white cells on its own.

By stopping the G-CSF med, we hope Varun's body will begin to grow the white cells without the help of meds. The day after G-CSF was stopped, the cell count dropped from 13.4 to 8.6.

Clinic visits have been quite hectic, with mom and Varun spending an average of 4-5 hours each day at the hospital. One day last week they left for the clinic hoping to be back home in 3 hours - and finally ended up spending more than 8 hours at the clinic due to additional transfusions Varun required (including the wait for the transfusion to get started).

Last Thursday we were disappointed to learn that Varun's CMV (virus) had returned positive yet again (this is the 2nd time his CMV was coming back positive since the transplant).
Because of the CMV, Varun was put on a med called Foscarnet, besides the Genciclovir already being administered for CMV. Prior to starting on the Foscarnet, they had taken another blood sample, the results of which returned 2 days later with a surprise: Varun's CMV was negative (even before the Foscarnet could take effect)!!! We can't say if this was a false alert, but lets hope the CMV continues to remain negative.

We are saddened to hear about Kyle and Paris who left for their heavenly abode in the last 2 weeks. Both Kyle and Paris were in the 5200 unit while Varun was in-patient. We can only imagine the pain their families must be going through. Please pray for their families.

Please continue to pray for Varun's recovery and for all those wonderful little warriors undergoing transplant.

bye.

Wednesday, January 19, 2005 1:56 AM CST

Day 53:

Varun is home!! (our temporary home in North carolina, that is).
Our little darling got discharged last Thursday (day: 48)after spending 2 months in the bone marrow unit. Ramya also was coming home after 2 months because never once did she want to leave Varun in the unit without mommy around.
(Sorry for not posting any updates since Varun got home - matter of fact, things are very busy at home since the discharge).

Getting discharged after a transplant doesn't imply Varun is out of danger yet. He has to continue with all medications he was on while at the hospital. He cannot go out without a mask - to protect him from infections.
Varun's daily schedule looks like this:
7:30am - 10am : 2 medicines that are administered intravenously (through his vein) by infusion pumps, lasting 2 hours.
Around 8am Varun's blood sample is drawn through his central line and dropped off at the hospital.
11 am - visit to the clinic. The results of the blood tests on the specimen taken earlier determines what kind of attention Varun would need that day.
(eg: if the results indicate his platelet count is low, varun would need to get platelet transfusion.
He is also scheduled to get IVIG transfusion thrice a week at the clinic (IVIG = Intravenous immune globulin, used to provide passive immunity or to alter the immune response by increasing the individual's antibody titer and antigen-antibody reaction potential).
Depending on what needs to get done each day, Varun could spend anywhere between 3 and 6 hours at the hospital.

Once varun is back home from the clinic, his evening schedule kicks off at 5:30 pm - another round of 4 medicines that are administered by infusion pumps, again lasting approx. 2 hours.
Finally he is put on TPN (Total Parental Nutrition) that runs from 8pm through 8am the next morning.
Today was a very long day at the clinic -Varun and Ramya were in the clinic from 10am through 7pm because he was getting both IVIG and Red blood cell transfusions.IVIG typically lasts 2 hours and Red cell transfusion lasts 3 hours. The two transfustions cannot run in parallel because in the event of a reaction, they will not be able to identify which of the two transfusions is the real cause. We got delayed further because after the transfusions, Varun's BP was reading abnormally high - so they had to monitor his BP for sometime before it settled down.

Overall Varun is doing good. He is beginning to come out of the shell he was in since his chemotheraphy started. Until then Varun would be unusually quiet, always clutching something or the other in his hands for comfort - even in his sleep he would want to hold tightly on to the tv-remote while at the hospital. And lately his favorite pastime is to play with "cotton balls" - ripping small pieces and lightly rolling them with his cute little fingers - and making a mess on the carpet for daddy to clean up :-). We couldn't believe when 2 nights ago he suddenly woke up in the middle of the night crying loudly -and no matter what we tried, he wouldn't calm down. Finally when we handed him a cotton ball he immediately stopped crying - and started ripping the cotton ball gently (like he would during the day).

Varun's cell count is 5.7 today. His platelet is down to 33, so chances of getting a platelet transfusion tomorrow is high (if platelet is less than 20).
Please continue to pray for all these wonderful kids going through this treatment. They all have a long way to go and need your prayers and support.

Following is the list of meds varun is currently on:

IV medication:
Cyclosporine (prevents GvHD) - twice a day
G-CSF(boosts white blood cells)
Solumedrol(prevents GvHd) - twice a day
Ganciclovir(to treat CMV virus)
TPN/Lipids

Oral meds:
Enalapril(Blood Pressure) - twice a day
Prilosec (acid reflux)
Voriconazole(Anti-fungal) - twice a day
Multivitamin

bye.

Monday, January 10, 2005 11:35 PM CST

Day 45:

Varun's cell count has increased in the last couple of days and currently stands at 1.9. His ANC also is improving, at 1273 today. Thank you all for praying for Varun - your prayers mean so much for our little darling.
Varun got his first pass today - an opportunity to see life outside his room that he had never left in the past 55 days. He seemed to enjoy the attention he drew from the 5200 families and nurses while he was outside today.
(Because Varun's disease was related to immunodeficiency, he has had very limited outside contact for fear of catching a virus,
since the diagnosis of Wiskott Aldrich at 5 months of age).

We got another piece of good news later in the day when Dr. Prasad called to tell us the results of Varun's FISH test (a test that determines what percentage of his new cells are from the donor). All of Varun's new cells were found to be from the donor, which is very good news indeed. (As a word of caution, these numbers could change in the future - its only that currently all his new cells have originated from the donor)

Our little Princess (Janvi-didi)'s mom paid us a visit at the 5200 unit today when Janvi and her parents came down from Dallas for her 6 month check up. Janvi sent a special gift for her little brother Varun through her mom. A big "thank you" to Janvi-didi from Varun - we are so thankful that you are doing really good. We are praying that everything will work out fine for you with the help of your wonderful parents. Janvi's homepage is www.caringbridge.com/tx/janvi.

If Varun continues to do well, we could see him getting discharged as early as thursday. We will continue to stay in Durham until Varun is ready to move back to New Hampshire.

bye for now.

Friday, January 7, 2005 11:25 PM CST

Day 42:

Good news in terms of Varun's white cell count growth!!

Varun reached a (small) milestone on day 40 (Jan 5th) when his ANC went over 500 and stayed there for three days in a row. His cell count also had been on the increase (1.0, 1.5 and 1.3 during those 3 days).
For patients undergoing chemotherapy, ANC (Absolute Neutrophil Count) is a way to find out an estimate of the total number of neutrophils that they have available in their blood to fight off any possible infections).
When their ANC reads above 500 for 3 consecutive days, their white-cells are considered engrafted.

Thank you for all your prayers for Varun and the many kids in this unit, we really appreciate it.

Though we have ways to go, both mommy and daddy felt very much relieved after the agonizing wait especially in the past 2-3 weeks.

Having said that, Varun's cell count started dropping in the last 2 days. It read 1.0 yesterday and 0.9 today. The possible reason for this drop is the medicine being administered to treat the CMV virus. This medicine is known to suppress both the white cells and platelets. Even if the CMV virus is treated completely, this medicine cannot be stopped altogether. Starting today, the doctors have decided to reduce the dosage of this medicine (Ganciclovir) gradually to give his white cells a chance to multiply quicker.

About a week ago varun was introduced to solid food. (Until now Varun has been feeding on the special formula called neocate because he is allergic to both dairy and soy based products). He enjoyed the new diet initially, and has refused to eat for 2 days now.

Please continue to pray for Varun's cells to grow quicker.

Please also pray for Ryan Smedley's family who lost their charming 5-year old boy last week. We are deeply saddened by their loss. Ryan was known as "the little cowboy" because of his love for horses. Ryan's website is http://www3.caringbridge.org/va/ryansmedley

bye.

Friday, December 31, 2004 11:54 PM CST

Day 35:

Wish you all a Very Happy New Year 2005 !!

We pray that all the children in this unit will have a better year in 2005 and soon be on the road to recovery.

Our heart also goes out to the families of the dead and all those people who have suffered so much from the Tsunami that hit the countries lining the Indian Ocean.

Its been more than 10 days since my last update - a period that brought us a mix of good and not-so-good tidings.

In my last journal update, i had mentioned that Varun's cell count was 0.3. The very next day after the update his cell count dropped to 0.2 and stayed there until the day
after Christmas. On 12/26 Varun's count began to move up - it read 0.4; and the following day it was 0.5.

We were so thrilled that finally the prayers of his well-wishers were being heard !!

However, a disappointing news greeted us a day later - Varun's CMV virus has made a comeback. (Varun did have traces of the CMV virus in his blood prior to the transplant - and this was the reason his transplant got delayed by 2 weeks while they treated the virus). The virus has come back at a time when his immune system is practically non existent. We are hopeful that the new medication for CMV will help Varun safely negotiate this virus.

As a result of this virus, they doubled the dose of the medication G-CSF (which helps to boost the white cell growth). Today his cell count is 0.9, which is positive news still.

Please pray for little Ryan (website: www.caringbridge.com/va/ryansmedley) who is not doing well. His wonderful parents Kim and Larry need a miracle to save their dear child. Please pray for a miracle for Ryan.

bye

Monday, December 20, 2004 11:43 PM CST

Day 24:

WBC Count = 0.3

Since our last post, Varun's cell count increased from 0.1 to 0.2 and stayed put for 4 days - and this morning the results came back showing the cell count going up another notch to 0.3!!

This comes to us as a great relief indeed - Varun still has a long, long way to go, but the incredibly slow pace of the cell growth had begun to worry us a (little) bit (for reasons i will delve into shortly).

To be honest, Dr. K had warned us days before the transplant that we should be very patient once the transplant is done and should not become concerned if Varun's cells do not show signs of growth initially. We were prepared for the long wait - however, on the day of the transplant we were told that because they were able to administer Varun quite a good amount of stem cells from the (cord blood) sample, the doctors expected his cells to start growing by the end of the 2nd week (from the day of the transplant)!!

That it didn't happen within 2 weeks wasn't a big surprise to the doctors because (they said) each patient responds differently to the treatment. However, as Varun's parents, we always had this concern at the back of our minds.

Please continue to pray for Varun's cells to keep growing and also please include all the kids (in this unit) in your prayers so that they all can go back home to lead a normal life just as we do.

If we do not get a chance to write another update before Xmas, here's Varun wishing you all:

Merry Christmas and Happy Holidays !!!

Wednesday, December 15, 2004 1:14 AM CST

Day 18: (Dec-14-2004)

Varun's Cell count continues to remain at 0.1
His BP continues to spike at times - and brought under control with extra medication. (One of the side-effect of the steroids being administered is high BP, so the spike in BP is not surprising).

Today Ramya spent her 2nd straight birthday in a hospital (last year this day she was recovering in the hospital after delivering Varun).

Varun's mucositis continues to be mild - at least from what we could tell. Today he looked more relaxed, with his smiles coming more easily. His lips have a thick white coating which Dr. K said was due to mucositis.

The little trooper, Mikey, (the child in the room next to Varun's) lost his courageous fight and gained his true angel wings early this morning. God shows his love in different ways, and in Mikey's case he chose to take him back sooner. Please visit Mikey's website (http://www2.caringbridge.org/fl/mikey/guestbook.html)
to send his mother words of encouragement.

bye for now.

Saturday, December 11, 2004 6:26 PM CST

Varun turned 1 year old yesterday!!

Thank you to everyone who took the time to wish (and those who visited) our little
darling on this special occasion which means so much to us.

We couldn't help but look back at the day (May 20th 2004) - the day Varun was dignosed with severe blood abnormalities- not knowing what it meant for Varun as we rushed from New Hampshire to Children's Hospital (in Boston) the same night.
Since then it has been a roller coaster ride for us - made bearable by the love showered on us (and the concern displayed) by our family, friends and well wishers.

During this period we got to experience - and still continue to experience- the life thousands of families around the world have been living when their loved ones are diagnosed with a life-threatening disease.

We thank God for giving Varun a medical condition that can be treated- and for choosing us to be the parents to take care of this little darling.

Nurse Emily was the first to wish Varun "Happy Birthday!!" - at the stroke of midnight !!

In the morning, Sumathi and Geetha offered prayers at the temple for Varun's speedy recovery and visited Varun soon after.
In the evening, Varun cut his first birthday cake in the presence of the nurses who gathered around to sing 'happy birthday to Varun"
Duke Red Cross members also came in the evening to wish Varun on his special day. Thank you all and also to Shilpa Parikh for your kind gesture.

Varun also had a special gift for each of the 15 patients who share the Pediatric Bone Marrow Transplant Unit with him. We think he'll grow into a child who'd love to share his happy moments with others.

Grow Cells GROW!!

Its Day 15 today (since the transplant) and Varun's cell count (ie., White Blood cells) stands at 0.1. Hopefully his cell count will start increasing in the next few days.Please pray for Varun's cells to grow faster.

Mikey is a lovely boy from Florida who is in the room next to Varun's. Unfortunately he hasn't been doing well lately and is currently fighting for his life. Please pray for Mikey too. Mikey's website is www.caringbridge.com/fl/mikey.

Today the PitCrewForKids team (from Hendrick Motorsports)visited our unit to show their support for the kids undergoing transplant. They visit this unit at least twice a year and hand out goodies to each patient. You can find out more about this team (and the motivation behind their visit) by visiting their website at http://www.pitcrewsforkids.org

Saturday, December 4, 2004 11:02 PM CST

Day +8:

Varun has been running fever off and on for a couple of days now. Nothing to worry, as per the doctors - so we are not too concerned about it (now).

Next Friday is Varun's 1st birthday and today we learned that Christina's (Christina is the mother of another child patient in our unit, Cortez) birthday also falls on the same day as Varun's. Isn't that wonderful!! Now Christina and varun can cut the cake together :-)

Varun's uncle Sushand is visiting from Connecticut to cheer us up and to spend time with his little fighter.

Also, thank you Geetha for visiting Varun today and for your kind gesture.

Wednesday, December 1, 2004 11:03 PM CST

Varun has a new look today. A new bald look !!

No, not from the chemo - yesterday when we noticed that his hair was beginning to fall out, we requested the nurse to shave his head to avoid the annoying mess that the fallen hair could potentially create - of course, it is safer for varun too.

The nurses say his eyes look much bigger now :-)

Otherwise he has been relatively calm today...clutching to a cream-tube that for some apparent reason is giving him great comfort. He just wouldn't let go of it - simply holding on to it (like a trophy) for long periods of time.

We have posted a new photo in the *ViewPhotos* link below of Varun holding his transplant certificate. He didn't pose for us - it just happened by accident. He seemed to like his new certificate and was inspecting it more thoroughly, when suddenly we noticed that he was watching us with the certificate facing us. CLICK!! and we snapped him.

Dr. Kurtzberg visited him on Monday.

Saturday, November 27, 2004 11:06 PM CST

Day 1:

Varun was irritable for the most part of the day, possibly in pain. He had to be given morphine to calm him down.

Today Varun had a visitor - someone who has been closely following Varun's progress ever since she heard about him 4 months ago. Since July, Dr. Sumathi Iyengar has been in touch with us practically every week, giving us hope and inspiring us to think positive. She has been a great help to us. Thank you Sumathi.

Sumathi lives not too far from Duke and has been bringing us plenty of food on a number of occasion since we moved to North Carolina 6 weeks ago. Today she brought us uppuma, sambar, rasam and rasagolla!!!

Varun is yet to lose his hair from the chemo.
His hair will probably start falling out in the next couple of days. It will be a sad sight to see our little darling without his lovely hair....so his dad has been clicking away feverishly whenever Varun calms down for a brief moment.

Friday, November 26, 2004 11:14 AM CST

Varun has been transplanted!!

Varun's transplant started at 11:30am (EST) and lasted 30 minutes. (The duration is dependent on the age and weight of the patient. Varun weighs much less than an average baby his age, hence the amount of cord blood cells needed for the transplant is less too).

some of the side-effects (for the first 24 hours of the transplant) are high BP and low heart-rate.
They are keeping an eye on those two now.

Thursday, November 25, 2004 9:39 PM CST

Day -1

Transplant day is tomorrow!!

Varun's chemo ended yesterday. He appears to be all set to get his own blood system replaced with that of the donor's blood system tomorrow.

The cord blood was shipped a while ago from the hospital (where the sample was originally collected) in California to Boston (initially Varun was scheduled for a transplant in Boston - Dana Farber/ Children's Hospital) and then to Duke.

The cord blood will be thawed in the morning, the cell counts determined and the transplant will likely happen around 12 noon (Eastern Standard Time).

Varun, though much less active since he was administered chemo, still looks cheerful. Today Steve (from Duke Red Cross) visited him again with a large box of chocolates!!
Varun has just cut his first teeth - in fact two teeth sprouting out from inside his lower lip.

Earlier in the day i heard from Tim Dutta that Pia's transplant went smoothly. We are so happy that things are looking good for Pia and (hopefully) Varun. Please pray for our other patients who are still waiting to find a bone-marrow match.

Tuesday, November 23, 2004 11:54 PM CST

Varun has been receiving chemo for 7 days now. He has had no food intake during these days other than the glucose he receives through IV. The best way to describe the effect of chemo on varun is from his reaction when we try to make him laugh.

Prior to the transplant, Varun would laugh quite a lot when we make squealing noises. Not any more - in the place of those peals of baby laughter, all you get to see now is a feeble smile!!

At times he hardly has the energy to acknowledge our presence. Heart-wrenching at first, but easy enough to take it in our stride once we realize everything is happening for his own good.

A month ago Duke Red Cross sought our permission to dedicate their next bone marrow drive to Varun.
The drive was held over the past weekend in the Duke campus. Today the Duke Red Cross committee members visited Varun to present him a poster signed by many well wishers who had attended the drive. It was a very touching gesture
and we only wish that Varun will grow up to read all those lovely messages filled with warmth!!
Thank you Steve, and your friends at the Red Cross for this precious gift and for working so hard to educate the
public on the need to help others by registering as a potential bone marrow donor.

They also brought us dinner from the local Indian restaurant! Thank you again for such a wonderful gesture!!

We pray for Pia Awal's speedy recovery as she undergoes bone marrow transplant at the Fred Hutchinson hospital today. You are a courageous woman, Pia. Your story has inspired people to take notice of the slogan "it only takes 1 match to save a life". If only more and more people appreciated that their bone marrow could be a match for someone who is fighting for his/her life!!
Pia's website is www.matchpia.org.

Thursday, November 18, 2004 6:53 PM CST

Day -8:

(For transplant purposes, the days are numbered from -9 (the day the chemo starts) through 0 (the day the actual transplant happens) and goes up).

Varun was very quiet for the most part of the day and gradually became active only in the latter part of the day. His heamoglobin level fell today, necessitating an RBC transfusion.

Varun's feeding nose-dived to just 2 ounces of baby formula today compared to 18 ounces yesterday. They reassured us that this was typical of children undergoing chemotheraphy....it will only get worse as days go by with hardly any oral feeding possible. Once his chemo is done with, they will feed him via IV (they cannot start the IV feeding while Varun is still on chemo).

Wednesday, November 17, 2004 7:18 PM CST

Varun finally got admitted late Tuesday. Immediately he was put on medication, with the actual chemo starting early Wednesday morning (4 am).

For the most part of the day today Varun wasn't himself. He was rubbing his eyes, hardly interested in the happenings around him. His eyes were a little puffed up also. Only towards the fag end of the day did he manage to get back to his usual self.

Today Varun got his very own Photo ID bearing the Duke stamp!! Varun has developed a fancy for the (photo ID) badges of the nurses attending to him at the clinic. They would find it very convenient to hand over their badge to him and get on with their work while he fiddles with it.

Probably the only team that couldn't win him over were the Phlebotomists (the team that draws blood in hospitals). If they were to maintain a "black-list", probably Varun would figure at the top of their list :-). He would lash out with his (strong) legs with all his strength, giving the phlebotomists such a hard time - often taking more than two people to grapple with him and bring him under control.

Monday, November 15, 2004 11:18 PM CST

Its been more than a month since we moved to Durham. Tomorrow Varun should get admitted to Duke for the CBT procedure. Until now Varun was being seen as an out-patient for his pre-transplant tests. Varun got his central line put in on October 21st via a surgical procedure.

Starting Wednesday, he will be administered chemotherapy for the first 8 days, followed by the cord blood transplant on the 10th day.

Varun has been in good spirit. Given that he lags in weight, the TPN (a method of supplying nourishment to children unable to eat or are poor eaters) has helped Varun gain some weight.

Ramya is all packed up for the hospital stay since last week (yes, Varun was originally scheduled to get started last week, but at the last moment he got pushed out to this week).

Saturday, October 16, 2004 10:43 AM CDT

Born in December 2003, Varun was diagnosed with Wiskott Aldrich Syndrome at 5 months.

Knowing that Varun's only chance for survival is to undergo a bone-marrow transplant, our family, friends and hundreds of well wishers helped spread the word among the community to get as many people tested to see if we could find a match for Varun and also to educate them on the need to register with the National Marrow Donor Program.

With no bone marrow match found, we decided to fall back on an (already known) cord-blood near match. In early October 2004 we temporarily moved from New Hampshire to be near Duke medical Center in North Carolina.

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