Esha Leukemia update

March 11th update

2011-03-10T21:29:00.001-08:00

Esha is doing well and continues to go for her monthly labs and physical check ups. Once every four months, she gets her bone marrow checked, to make sure everything is fine. She loves attending school (2nd grade) and being in the company of her friends. She is eagerly waiting for Spring, so we can get started with planting the vegetable and plant garden :)

Esha's brother Sohan turned 6 yrs, last month and he is in kindergarten.

I apologize for not updating the blog in a while now and again thanks for checking on us.

Nov 1st update

2010-11-01T11:07:00.000-07:00

Just a quick update that Esha is doing good and continues to go in for labs and gets iv antibiotics every month. She gets a bone marrow testing done, once every 3 months.

Esha started 2nd grade last Sept and is enjoying every bit of school and friends. Her brother Sohan, started Kinder Garden. For the Halloween yesterday, she was dressed like a cowgirl and went trick or treating. Her brother was a Motor bike racer. She didn't get to do trick or treating for the last few years, as her counts were always low from all the Chemo she got. She is excited that she got a lot of candy and she was in turn very generous to the kids that came by to our house for trick or treating. She asked them to pick candy from the bowl, as much as they wanted and kept refilling the bowl :)

Aug 30th update

2010-08-30T11:22:00.000-07:00

Esha turned 7 on Aug 8th. She was very excited about her birthday and we had a small party for her at home with a few friends and family members. She is doing well and continues to get iv pentamidine, labs and physical check up, once a month. She finished her chemo at the end of June. She gets her bone marrow checked once every four months.

Esha is ready to start school next week. She will be going into 2nd grade. Her brother Sohan will start Kindergarten. They are both very excited about school and are all set to go. So far, we all had a fun summer. Esha and Sohan are busy learning swimming and tennis this summer/fall. They are done with their school shopping and are really looking forward to start school. Recently, a friend of Esha (Roni) visited us along with his family from Israel and we all had a ton of fun with them. It was a very exciting reunion for all of us, after almost 3 yrs.

July 2nd 2010 update

2010-07-02T13:03:00.000-07:00

Esha finished her chemotheraphy at the end of June, as per the protocol. She is doing well and would continue to go for iv antibiotics and labs, once a month. She will also be getting bone marrow tests done every 4 months. She had been through a rough 3 years (almost) of chemo and its terrible side effects, since Sep '07. We are hoping and praying that she continues to do good.

Esha finished her first grade and is moving onto 2nd grade, this fall. Her brother, Sohan will start Kindergarten. They are both enjoying the summer and are busy with tennis and swimming lessons and the long bike rides.

With the chemo done now, we feel nervous that her safety net is gone, but she has to come out of it sooner or later. Please continue to pray for her continued recovery and thanks for being with us through this difficult journey.

Esha and Sohan have lost a whole bunch of teeth between the two of them and look super cute with lots of gaps in their mouths. They are keeping the tooth fairy super busy !!

Happy 4th of July everyone!!

April 26th 2010 update

2010-04-26T14:20:00.000-07:00

Esha continues to get her weekly labs and chemo. Every thursday, she goes to Vassar Bros hospital, (about 10 mins drive from home) for labs/chemo. About once a month she goes to Westchester Med center, where she gets chemo and also gets checked by her doc. Dr.Oya Tugal. She is doing good and is about begin the 12th cycle of her treatment, this coming thursday.

Esha is keeping herself busy and enjoying the warm spring weather. She and her brother have planted some seeds (both veggies and flowers) and are eagerly waiting to start their gardening activities in the coming weeks.

March 28th update

2010-03-28T16:20:00.000-07:00

Esha continues to go for the weekly chemo/labs on thursdays. This past thursday, her blood counts were very low and we had to skip this week's chemo. By Friday evening, she developed a mild fever and we got her admitted in the Westchester hospital. She is back home today as her blood counts seem to be going up and is fever free.

She is doing fine now and is busy playing with her brother.

Feb 16th update

2010-02-16T06:35:00.000-08:00

Esha is doing well and continues to get the weekly labs/iv Chemo on thursdays. She is currently on the 10th cycle ( 2 more to go). Roughly, she has another 5 more months of weekly chemo with this protocol. Esha is being home schooled and is keeping busy with her school work and home work. As of now, the plan is to keep her home for this school year. Her brother, Sohan turned 5 yesterday and is keeping her busy, as always. Esha and Sohan are enjoying the winter weather and snow storms. Please scroll down and check their recent pics and their cooking show.

Dec 26 th update

2009-12-26T18:12:00.000-08:00

Esha is doing well and is visiting her uncle and aunt in San Jose, CA. We all (Esha, Sohan, mom, dad and grandparents) flew into San Jose on Dec 12th and are going back to NY on Jan 1st. So far, we are all having a great time here and the kids absolutely love San Jose and being with their uncle. The weather is nice and warm here, unlike in NY.

Esha continues to get her weekly labs here at the local children's hospital. She and her brother Sohan got a ton of presents for Christmas and it was very special for all of us, that we all could get together.

I wish everyone a very happy new year and hope the coming year brings a lot of good things your way.

Happy Holidays!!!

Nov 24th update

2009-11-24T16:49:00.000-08:00

Just a quick update that Esha has been sick off and on a few times, during the past month and half, with cold, cough and fevers. It was some sort of virus, with flu-like symptoms, going on around in the house and we all took our turn at getting sick. I had Esha tested for H1N1 and luckily it was not swine. She is doing fine now and is fever free for a week now. Esha and her brother got the swine flu shots yesterday.

Esha continues to get weekly chemo and labs on Thursdays. Her teacher comes home for 5-6 hrs a week, which keeps Esha buzy.

I apologize for the delay in updating the blog. Happy thanksgiving everyone.

-Esha's mom

Oct 5th update

2009-10-05T17:22:00.000-07:00

Esha is doing well and continues to go in for weekly labs and iv Methotrexate infusion, on Thursdays. We are very excited that Esha started school (1st grade) this year. A teacher comes home to instruct her for 5 (or 6) hours a week. She and Sohan are thoroughly enjoying the time they spend with the teacher. She sure has a thirst for knowledge and is eagerly soaking up on everything that comes out of the teacher's mouth. Our original plan was to send her to school 2 days a week, but with the Swine flu scare at schools across the country and Esha's counts being low all the time, we are just not comfortable to send her out yet. Esha did get her seasonal flu-shot (inactive one, not the live shot) recently and is waiting to get the H1N1 flu shot (inactive) whenever it becomes available, for whatever its worth.

Esha is enjoying Fall season. We had a great summer and we are looking forward to a good fall season. Hopefully no infections and no more hospital stays, with the cold season coming up. We had been to the nearby farms a few times to pick apples and pumpkins. She painted her pumpkin really cool. Talking of painting, one of Esha's paintings ended up on the walls of Maria Ferrari Childrens hospital at Westchester Med. center. We are so proud that she did a great piece of art. She continues to paint, draw and make jewelery. Lately, the homework keeps her busy too.

I ended up contacting the Whitehouse finally, about Esha's wish to meet with President Obama. Hopefully someone will get back. Another exciting thing happening this fall is the Imagination Movers are coming to poughkeepsie for a performance next month and we are really looking forward to seing them again.

I want to thank you all again for checking on Esha's blog regularly and for your comments and emails. Please do not hesitate to contact with any questions you might have. Thanks for your prayers and support.

Sep 8th update

2009-09-08T13:44:00.000-07:00

Our week long trip (Esha's Make-A-Wish trip) to Disneyland went very well. We stayed at 'Give Kids The World' Village http://www.gktw.com and it was a great experience for all of us. We were treated royally from the minute the Limo picked us up at home on Aug 29th morning to the minute they dropped us back home on Sep 4th evening. Esha and Sohan absolutely loved everything about the trip - the limo rides, flight, our stay at GKTW village, Magic kingdom, Animal kingdom, Aquatica, SeaWorld, Epcot, Disney Hollywood studios (they also gave us tickets to Universal Studios, but we did not have enough time to go to these parks).

During those 7 days, we felt like we were a normal family again - with no doctor visits and no labs - but just pure FUN all day long. Esha enjoyed every single ride that she went on at the parks and every single show/musical that we went to, especially the 3-D shows. Sohan was a bit nervous on some of the steep rides. But all in all, they both had a blast. They also did a LOT of shopping and bot a ton of souvenirs. A big thanks to Make-A-Wish Foundation and Give Kids The World for making this happen. We took a lot of pics, some of which are posted here. These were the best 7 days of our lives, since Esha's treatment began about 2 years ago, on Sep 18th, 2007, that we will cherish for ever.

Its hard to believe that 2 years have passed by, since the whole ordeal began. We have come a long way in the last 2 years, but there's still a long way ahead of us. During the last 2 years, she had gotten numerous rounds of chemos, got hospitalized for several days/weeks, she kept losing her hair following each round of chemo, it would come and go cycle after cycle, her baby brother suffered a lot when we were away at the hospital so much, she had so many side effects from the chemo and radiation, so much pain that she went through at times, we all cried a lot, we did laugh a lot too as a family, so many bad things happened, we had some good moments too. But all that matters to us at this very moment is that she is one heck of a kid. She is compassionate, caring and loving. She is strong. She is full of life. She loves being a kid. She never complains about getting poked, never complains about a ton of meds that she swallows on a daily basis. Never asked us why she has to go through something that the other kids don't have to. She just does what she is asked to do and she trusts us, more than anything else. We all learn a thing or two from her every day. We are truely blessed to have her.

Please pray that the remaining treatment ( another year or so ahead of us) goes through smoothly and that she continues to be healthy. A huge thanks to all of you for checking on her blog regularly.

Aug 28th update

2009-08-28T11:58:00.000-07:00

Our week long trip to New Orleans (Louisiana), Houston and Austin (Texas) went very well. Esha and Sohan had a blast. They were very surprised to meet with the Imagination Movers. We obviously, didn't tell them till the last minute where we were going. We just kept telling them that we will be visiting their cousins, which we did in Houston, TX. The Movers were a LOT of fun. They took us around and showed us their production unit and warehouse, all their props and the warehouse mouse's cubby and all their cool stuff. We also got to watch a show that they were shooting at that time. Esha and Sohan were mesmerised being there with the Movers. It was like their dream come true. We took lots of pics and I will post them sometime. They also got a lot of gifts from the Movers. Imagination Movers rock!!! Thank you Movers for spending your valuable time with us and making Esha's wish come true. This was one of her first three wishes that she mentioned to the Make a Wish foundation. We are so happy that we were able to fulfil this one with the help from the Movers. Esha and Sohan also had a lot of fun visiting their cousins in Houston and spending some time with them and with our other friends. All in all, it was a very successfull trip and things worked out as planned.

Esha's Make-a-Wish trip to Disneyland is coming up tomorrow and we will be leaving early tomorrow morning to Orlando, Florida if all goes as planned. Knowing what happened last time at the last minute, we haven't told the kids yet about the trip. I am just packing, with the hope that it really happens this time and they get to have some fun. Right now, her blood counts are good and hopefully she will be ok.

Esha is currently on block 1 of Cycle 7 (of 12) and she continues to go for weekly labs, every thursday and on days that her counts are low she goes as needed. She is on Gleevec, Mercaptopurine and gets weekly intravenous Methotrexate.

Aug 13th update

2009-08-13T12:44:00.000-07:00

Esha celebrated her 6th birthday on Aug 8th. She had two of her friends over for cake. It was a lot of fun.

Esha got invited to visit the Imagination Movers and their production set in New Orleans. We are leaving today evening on this trip. Esha and Sohan are not aware that they will be meeting with the Movers, although they know we are going somewhere. Infact, we didn't even tell them anything about the travel until this noon (until Esha's labs came back). They had a huge disappointment last time when our trip to Disneyland got cancelled at the last minute. I am sure they will be surprised a LOT to see the Movers !!!!

Esha had low counts for over 10 days now and they are on a recovery mode. I took her in for labs this morning and she seems to be coming up on her counts now. I really hope and pray that this trip really works out well for the kids.

July 28th update

2009-07-28T16:33:00.000-07:00

Esha continues to go in for weekly labs, on thursdays. She is now getting iv Methotrexate, instead of the oral Methotrexate. Its the same dosage but keeps her liver enzymes stable and her white counts are not sinking down with the iv medicine. She began her 6th cycle on July 23rd. She has 6 more of these cycles to go thru and each cycle is 8 weeks long.

Esha is doing well and so far we have had a good summer. We went to Jones beach, Bronx zoo, camp Kiwi, Hershey Park (PA) and Crayola World (Eaton, PA) to name a few interesting places. So, we have been going places and doing things, weather permitting and her counts permitting, which explains why I haven't been updating the blog as often as I promised to. But atleast, we get a little break here and there and we are trying to make the most out of it.

She is on a bunch of meds on a daily basis. I am not posting the details here but if any of you need more info on the meds she is currently on or on her current cycle info, please do not hesistate to contact.

We will try and shoot for the Disneyland trip again towards later next month. This is her Make-a-wish trip which was supposed to happen in June, but got cancelled at the last minute when esha got fever. Hopefully it will work out this time. Hope everyone is having a good summer!!

July 7th update

2009-07-07T17:09:00.000-07:00

Esha is doing well and we just returned home from our mini vacation (micro rather) yesterday. We took the kids out to the Hersheypark, PA for the July 4th weekend. It was super crowded but we kept washing their hands a lot and Esha had her mask on for hours together. But they had a blast !! Poor kids haven't been anywhere in 2 years, besides the hospital.

By the way, Esha was at the hospital for a week (June 19th - 25th) with low counts and mild fevers that she had for over 2 weeks. She was feeling tired and weak and her appetite went down a lot. She would sleep for extra long hours. All these symptoms scared us a lot. I insisted on a bone marrow testing and the results came back normal. It turns out these are all the side effects of cranial radiation she got about 2 months ago ( called post radiation somnolesce syndrome. For those of you that are going thru her protocol and need more info on this, pl feel free to ask for more details). She is coming out of this slowly though. Being away from home for a couple of days and being very active helped her a lot, i guess.

She is currently getting the iv Methotrexate instead of the oral tabs (same dosage tho). Hopefully this will help her liver enzymes to stay normal. She is also on Gleevec and Mercaptopurine on a daily dose. She continues to go in for weekly blood draws. She is doing well and keeping herself busy.

June 16th update

2009-06-16T08:23:00.000-07:00

The trip to Disneyland got canceled unfortunately, as Esha developed low-grade fever, the night before the trip. We were all very disappointed, especially the kids. She still continues to have mild fevers (between 99.5 to 100.5F) since the June 11th. Her white counts are low, which is probably what is causing these fevers. Platelets and Heamoglobin are fine. She is somewhat tired but is doing good otherwise. Esha is not on any oral chemo meds for the last 6 days, due to low white counts. We were instructed to get her admitted at the hospital if the temps go above 101.5. So she is home and is fighting this off on her own (no antibiotics). We will do the Disney trip at a later point when she gets back to normalcy.

June 11th update

2009-06-11T10:30:00.000-07:00

Just a quick update that Esha is doing good and is getting ready for her make a wish trip to Disneyland. We (Esha, mom, dad and her brother Sohan) are leaving tomorrow and returning on June 18th. It did come up rather quickly and things got arranged fast. Make a wish http://www.wish.org/ is sponsoring this trip and we will be staying at Give Kids the World village for 6 nights . Please check out their web site at http://gktw.org/ and http://gktw.org/families

Esha is currently on the 2nd block of maintenance cycle #5. I took her for a blood draw yesterday and her white cell counts are low (heamoglobin and platelets are ok though). So she is currently off of any chemo meds (Mercaptopurine and PO Methotrexate), until we come back. This has been a problem with her, even during the first block. Oral Methotrexate elevates her liver enzymes and reduces her white counts, and the doc is trying to find an alternative chemo for her. I am hoping and praying that the counts don't plunge during our stay at Disney and that the trip goes well. For over an year and half, both Esha and her brother have suffered a lot and this trip will hopefully bring them something nice. Will let you know all about it when we return.

May 24th update

2009-05-24T07:39:00.000-07:00

I apologize for the delay in updating the blog. Esha is doing good and continues to go in for the weekly blood draws on Tuesdays. Following the radiation in early April, her counts were low for about 4 or 5 weeks, especially the white cell count. We took her off of Gleevec and other oral chemo meds for a couple of weeks now. The counts are good now.

She will start with the 2nd block(day 29) of Maintenance cycle 5 (of 12) this Tuesday. She will be getting iv Vincristine, iv Pentamidine (she takes this instead of Septra that some kids get), decadron, Mercaptopurine and Methotrexate. She will also go back on gleevec for 2 weeks.

Following radiation, she lost all her hair. Its just beginning to come back now. She is energetic and active and is having fun riding her bike and playing with her new friends and brother (or bother like she calls him sometimes) on the swing set. She made friends with the neighbors kids and they are having a blast. I make sure they all wash their hands well. I am scared at times that her friends might make her sick, especially when her counts are low. But I cannnot ask the 5 year old to stop living her life. I am just happy to see her have all the fun that she has now.

The make-a-wish coordinators came over to talk to her a few days ago. Her first preference is visiting the Imagination Movers and their warehouse. She had Disneyland as a second wish, in case the first one cannot happen and believe it or not, she expressed a desire to meet President Obama, as a third wish. I have no idea how this got into Esha's mind. What does a 5-yr old have anything to do with the Presisent of USA. I was honestly perplexed when she mentioned of this wish. They are working on this and I will keep you posted as to what they can do about her wish.

May 1st update

2009-05-01T00:07:00.000-07:00

Esha continues to go in for the weekly labs and her counts are very low as of now. She is currently not on any chemo meds, for the last couple of days, to give her a little break, so the counts would recover. Today we have a follow up appointment with the radiation oncologist, following her radiation. Three weeks after finishing the radiation, we are still not using any soaps/gels/creams/shampoo etc on her head/face, where she got the radiation. I should find out when we can use soap on her face. She is doing good and is on Decadron for the last 3 days. She is craving for certain kinds of food and seems to have a good apetite. She is playful and is active as usual.

My trip to India went good. It was very short but I atleast I got to see everyone in the immidiate family. I got soo tired from travelling back and forth in that short period, but it was well worth it. We wanted to take the kids to Disneyland sometime during end of May/early June, before the schools close. But now we are not sure with all the scare about Swine flu. I guess we will wait until they figure this thing out.

Esha is currently on the second half of Maintenance cycle #5 (of 12). She got iv Vincristine and iv Pentamidine (instead of Septra, she gets this once a month). Her white count is LOW. Her red and platelets are ok. So, we took her off of Gleevec, Mercaptopurine and Methotrexate. She will go in for another set of labs next Tuesday. Her uncle (dad's brother) is coming over this weekend, to visit us for a few days with his family and the kids are super excited and are eagerly waiting for their uncle.

April 13th update

2009-04-13T18:21:00.000-07:00

Just a quick update that Esha finished her 8-day radiation therapy successfully. She did not have any problems with the Propofol infusion during the second week and things went rather smoothly. She is going in for weekly blood draws, on Tuesdays and is doing good. She is on oral chemo meds - Gleevec, Mercaptopurine and Methotrexate (weekly).

I am going to India for a brief 1 week visit, leaving on this weekend. Its been a while (well over 2 yrs) since I saw my side of the family and its about time I pay them a quick visit. Will update the blog when I return - Esha's mom.

April 5th update

2009-04-05T06:21:00.000-07:00

Esha finished 5 (of the 8) days of radiation and we got a much needed break this weekend. The first day of radiation (and chemo) made her nauseous and lethargic. Second day was uneventful. She gets a general anesthesia during radiation, so she doesn't move, when the radiation beam hits her. Its a two phase anesthesia (so to speak), the first one puts her to sleep and the second one (Propofol) keeps her in sleep during the procedure. On day 3, Esha had low heart rate following the infusion of Propofol. They had to wake her up, in the recovery room (she normally sleeps for a good hour and half or so following the anesthesia). Day 4 was one heck of a day, when her heart rate was in 30's. It was scary, they woke her up and she did fine.

Propofol is known to cause this side effect in some kids, called Bradycardia (lower heart rate). This does NOT happen to all the kids. Just some kids take it differently I guess. They ran some tests on her heart, to rule out other problems with the heart and they all came back normal. So it was definitely Propofol that did this to Esha. Day 5 was not so bad as they were proactive and gave her a low dose of Actropene along with Propofol, to maintain the heart rate. Whew!! what an experience !! Thankfully, there are only 3 more days, Mon - Wed. I am so looking forward to getting done with this Propofol stuff.

Out of the 7 hrs or so it takes every day for the travel, waiting time, prepping etc, the actual radiation lasts for less than a minute. Except for an occasional pain in her legs ( could be from the Vincristine she got a week ago), Esha is doing well and is sportive and is taking the whole radiation thing, much better than us. Its a very low dose by the way. We will see how the remaining 3 days go.

March 30th update

2009-03-30T18:37:00.000-07:00

Esha began her cycle # 5 (of 12) today. This cycle is 56 days long. During this cycle, she is getting an 8-day course of radiation as prophylaxis (as a precaution). She is getting 12 Gy split across 8 days, Mon-Friday this week and Mon - Wed next week ( 1.5 Gy /day for 8 days), which is a low dose of radiation as per the radiation oncologist. But I guess no amount of radiation is good for anybody, especially on little kids.

Today was her day 1 of radiation. This morning when she went to the hospital, they sedated her and took some films of the head and did the radiation. The prepping took a lot more time than the actual radiation itself. Out of the 5 hrs that we were at the hospital, the radiation hardly lasted for 2 mins. or so. She also got her iv chemo, Vincristine today. We came back home in the afternoon and she was a little drowsy from the anesthesia. She is nauseous and is complaining of little headache.

Esha is finished with her inpatient chemo. She will still be going to the hospital a lot, as an out patient for chemo. There's also a lot of home chemo (orally administered) for the next year and half. She is watching her favorite tv shows right now and is reluctantly eating her dinner, as we speak. Will keep you posted as to how the other 7 days of radiation go.

March 17th update

2009-03-17T16:09:00.001-07:00

Esha got discharged from the hospital over the weekend, when her counts started going up. She went back today to get a unit of packed red cells this morning. We are back home now and she is doing good. She is still recovering from the last round of chemo and her counts are going up slowly.

She will be going to the nearby hospital (Vassar Brothers in Poughkeepsie) for weekly blood draws on Tuesdays. She will be going in for a CT-scan sometime next week, so they can get prepare a casting (mask) for her head for the radiation therapy she will be starting towards the end of this month. I will post more details in my next update on the upcoming radiation therapy.

March 12th update

2009-03-12T17:51:00.000-07:00

Just a quick update that Esha is still at the hospital and her counts are still low but they are starting to crawl up slowly. She is fever-free for the last 2 days. We had a little scare with her 2 nights ago, when they started to give ivig (iv immunoglobulin - this is supposed to boost her immunity), she reacted and her body temperature went down and stayed low for the whole night. It drove us crazy the whole night. They stopped the infusion and the temps slowly went back to normal by the following morning. She is doing good now and is still on antibiotics and anti-fungal meds. She is actually doing much better now than she was a couple of days ago. She is still on the neupogen shots and we are holding her Gleevec for now, until the counts recover. She got a unit of platelets last sunday. May be more transfusions in the next day or two, unless the counts go up on their own. We have been at the hospital since March 4th and hopefully they will send us home in the next couple of days.

March 7th update

2009-03-07T10:35:00.000-08:00

Esha went home on Monday morning (March 2nd) after her 5-day chemo finished. She got admitted back on wednesday (4th ) with fevers and low blood counts. Her counts have not bottomed down yet. By sometime next week, they will bottom down and then go up later. She received red cells yesterday. She will be getting platelets tomorrow. She is on neupogen growth factor shots now. She is also on antibiotics round the clock. During the next 5 days or so, she may be getting multiple blood transfusions. She is still getting fevers every 5 to 7 hrs or so. Her fevers are under control with tylenol. She is otherwise doing good and is playful and is active.

By the way, Esha is planning to plant strawberries, grapes (???), blueberries and an apple plant this spring.

March 1st update

2009-03-01T12:35:00.000-08:00

Esha is back at the hospital getting her chemo. She got admitted on wed, Feb 25th. She first got her spinal tap (chemo given into the spine) and a bone marrow aspirate. Later that day, they got her started on the 5-day chemo, cytoxan/mesna/etoposide combination. She has been getting chemo for the last 4 days and today is her last dose. We will be getting discharged tomorrow.

Esha is doing good thru the chemo and is keeping herself occupied. She was a bit nauseous on day 1, but she is fine now. Her brother, Sohan has been coming over every day to visit her. She is also working on a lot o projects at the art studio here at the hospital. She has been painting and coloring a lot. Today we made some nice pictures for her scrapbook.

In another 3 weeks, Esha will be finishing her cycle 4 of 12. Her next cycle involves an 8-day course of radiation, which should fall around the end of March or so. Once she finishes cycle 4, she will have to go thru 8 more cycles of maintenance, each cycle being 8 weeks long.

Its been 17 months since Esha got diagnosed in Sep '07. Since then, she has been in and out of the hospital numerous times to receive chemo and with low blood counts (as a result of chemo). Going forward, the rest of the treatment for the next year and half will hopefully be done as outpatient visits. According to her protocol, she will be moving on to the oral chemo meds (and an occasional intravenous chemo), starting cycle 5 and will be coming in as an out patient, except if she has to come in with low counts.

She is doing good and is looking forward to the spring, so she could plant some of her favorite plants in the garden.

Feb 16th update

2009-02-16T16:57:00.001-08:00

Esha is home and is doing good. Her next round of chemo will begin from Feb 25th and would require about 5 days of hospitalization. She's been going to the weekly blood draws at the nearby hospital (Vassar Bros). So far, the counts look good from the past round of chemo.

Esha's brother, Sohan, turned 4 yesterday and we had a little birthday party for him, just among the family. She was quite busy planning for his birthday for sometime now and it turned out great.

Esha is also busy going for the neurophysch testing, to establish a baseline, before she starts the radiation theraphy from end of March/April. She has been doing so good at these sessions that the doc is absolutely impressed with her skills.

After the next round of chemo, Esha will be moving on to oral chemo and radiation theraphy. The rest of the treatment will hopefully be done mostly as out patient.

Jan 31st update

2009-01-31T07:50:00.000-08:00

Esha is back at the hospital since Jan 27th. She came in for the spinal tap (chemo into her spine) and also got the 24-hr high dose Methotrexate. The chemo is all done now and we are waiting for her body toxicity levels to go down to under 0.1.

Esha will also be getting an iv immunoglobulin (iv ig), to boost her immunity levels. She is expected to get iv ig at some point this afternoon (this would run for 4 to 6 hrs) and they will let her go home, if she does good after this infusion. So hopefully tonight or tomorrow morning, we will get to go home.

There are a lot of sick kids in the hospital and I am trying to confine Esha to her room and not let her wander around to the play rooms and the arts studio and other common places. There are a few cases of c-diff and they even thought there was a girl with chicken pox. Its very scary for some one like Esha with 0 immunity, most of the time, to come in contract with a sick kid like that. She is doing fine and is cheerful. We should be back at the hospital around Feb 25th for her next round of chemo.

Jan 21st update

2009-01-21T13:18:00.000-08:00

Esha got discharged from the hospital on Monday night (Jan 19th), as her counts started going up. She received 6 transfusions ( 3 units of platelets and 3 units of red cells) during this hospital stay. She was on double doses of nuepogen shots, to boost her white count. The previous round of chemo she got was pretty rough on her and adding the cummulative effect of all the past rounds of chemo to it, kind of knocked her down completely. She had literally 0 white cell count for about 8 days and it would have been very risky to keep her home. It took her a while to recover but we are all happy to be back home and she is doing just fine.

She will be going in for a couple of blood draws before she begins her next round of chemo from Jan 28th. This would begin the 4th cycle of treatmet. This cycle has 2 rounds of intravenous chemo that would require hospitalization for about 5 days or so for each round. The rest of the treatment is supposedly oral meds and radiation theraphy, followed by weekly blood draws.

Esha is doing good and is happy to be back home.

Jan 11th update

2009-01-11T18:43:00.000-08:00

Esha is back at the hospital with very low counts and has received 2 units of platelets and a unit of red cells, in the last 3 days. She got admitted on wed night (Jan 7th) with low grade fever and cold, from extremely low counts. She is on neupogen growth factor shots and we are waiting for her counts to go up. Her counts should bounce back in the next 3 to 5 days. She is in good spirits and is keeping herself busy at the hospital. Since Dec 31st we have been home for under 2 days and she seems to be missing home a lot. Her brother paid her visits during the weekend which cheered her up. She is trying to keep herself occupied with all kinds of art projects.

Jan 6th update

2009-01-06T11:48:00.000-08:00

Esha was in the hospital from Dec 31st to Jan 5th. She got home yesterday afternoon, after finishing her 5-day chemo. She is tired from the hospital stay/medications and is a bit cranky from the steroids that she was on for the last 6 days or so. She is otherwise doing alright and we have started the neupogen shots (given subcutaneously to raise white blood count) this morning, as her counts are already in a downward trend. They bottom out in the next 7 to 15 days, at which point she may need blood transfusions. She will be going in for weekly blood draws and we will be watching her counts closely. She will be on these growth factor shots for about 2 weeks or so. She is feeling tired and lazy and was cuddling up in the couch and watching tv all morning long.

She will be on the oral chemo meds for the the next 3 weeks which would bring us to the end of 3rd cycle. She will have to go over another cycle (4th of 12) of 8 weeks, with 2 planned hospital stays, before she moves on to the radiation therapy (cycles 5th thru 12 - each cycle being 8 weeks long) and oral meds at home. I will keep you all posted as to how the rest of this cycle goes and when we get to begin the next one.

Dec 27th update

2008-12-28T07:42:00.000-08:00

Esha is doing well and continues to go for her weekly blood draws on Tuesdays. She is due for her next round of Chemo on Dec 31st, if her counts look good on this Tuesday's blood test. She will be getting chemo for 5 days. Since her last round of Chemo, earlier this month, Esha has received blood transfusion once. She is on the oral Chemo meds at home but no shots in about a month.

Esha wanted to see the New York City and she has been asking for it for some time now. So, we drove the kids to the city on the Christmas day. There was not a lot of traffic and the kids absolutely loved the trip. They stayed in the van for most part of the trip. It was their first trip to the city and they got very excited at just about everything they saw in the city. Ofcourse the city was beautifully decorated for Christmas. Esha wanted us to get on every single bridge that she saw there. It was a lot of fun!!

Esha and Sohan were very busy for Christmas in helping us with wrapping presents for the nurses and the other hospital staff. All in all, we had a wonderful christmas and we all got to be home, together, which made it even more special.

A few interesting things happened over the last couple of weeks. You all know how much Esha and Sohan love watching the Imagination Movers show on the Disney channel. Oh well, the Movers have contacted us through this blog and have sent some wonderful presents for Esha and Sohan. The kids were excited beyond description. Boy!! did they have a blast or what!!
Thank you movers for those wonderful presents and your thoughtfulness. We really appreciate what you did for them. You are their Heros!!!

Another interesting thing is that Brittany Miller Foundation and the Orange County Sheriffs department have sent a ton of presents for the kids. The kids were very excited to see the policemen come by and drop off a huge box of wrapped presents. They still talk about the policemen and the presents. They waited till the Christmas morning to open their presents. Thanks to Brittany Miller Foundation and the Orange County Sheriffs office for all their efforts and thoughtfulness and all their help.

Many other friends have sent us numerous goodies and well wishes. Thanks to all of you for your kindness.

At this most wonderful time of the year, I urge everyone to please register to donate bone marrow at http://www.nmdp.org/ While Esha happens to have some potentially good matches (the ideal match for Esha would have been our son Sohan, since they both did not match, we are proceeding with the Chemo. Bone marrow transplant is not essential for esha at this time), there are many kids and elders who are waiting for their donor to be found and that person could be you!! This kind and thoughtful act of yours could be saving many lives.

I hope you all have a very happy and healthy New Year. As we go into the new year, please continue to keep Esha in your prayers and wish her health and all the happiness in her little world.

Esha's mom

Dec 2nd update

2008-12-02T12:46:00.000-08:00

Esha is doing well and we all had a good thanksgiving. She did not have to go to the hospital that holiday weekend (unlike '07 thanksgiving), so we got lucky there!.

In fact, since the last time I updated the blog, she ended up in the hospital for a whole extra week (Nov 13- 20), with severely low counts and fever. The last round of chemo that she got has knocked down her blood levels significantly. During that week, she got supported externally. She received multiple red cell and platelet transfusions and was on the white cell building shots for about 3 weeks. They kept flushing her down with antibiotics round the clock, for a whole week to prevent infections, as she had no immunity whatsoever.

Here counts have recovered gradually since then, and now they are at a point where she could start her next round of chemo (begin cycle #3 of 4) from tomorrow (remember she gets chemo once every 4 weeks).

Tomorrow, she will get chemo injected into her spinal chord under sedation and will be admitted into the hospital for the next 4 days or so. She will get a continuous 24-hr infusion of high dose Methotrexate, intravenously followed by Leucovorin rescue and we will wait till her body toxic levels go down to 0.1 or lower, before she could get discharged.

She is keeping herself occupied with all her favorite activities and her increasingly troublesome brother. We are hanging in there, very thankful that she finished 2 of the 4 intense chemo cycles relatively smooth, since she began her maintenance phase end of last July. Hopefully we will sail thru the remaining 2 cycles (which would run till the end of April '09 or so) as smoothly, at which point she wouldn't need as much hospitalization. She would mostly be getting the oral chemo medication at home.

She watches Imagination Movers a lot and is always talking about the warehouse mouse and uncle knit-knots and other characters in there, ALL the time. I know these shows by heart now and I must have watched each of these shows at least 20 times with the kids :) That's all we do these days anyway, when we are home. We cuddle up and watch tv shows all the time :) or are busy coloring or painting. Its feels good to not have any social commitments at times!!

Happy holidays everyone!!
Esha's mom

Nov 13th update

2008-11-13T18:33:00.000-08:00

Esha was in the hospital from Nov 5th thru 10th and received 5 days of chemo. She got Cytoxan, Etoposide and Mesna for 5 days. She finished her chemo last sunday and got discharged on monday morning. She got transfused with a unit of red cells, before discharge. She is on Neupogen shots for the last 3 days, as her counts are extremely low. This afternoon, she got a unit of platelets and we just got home from the hospital. She is tired from the transfusion and just being at the hospital all day long.

Esha's white count is extremely low from all the chemo she got and we are trying to be as clean as possible around her. Hopefully, the Neupogen shots will kick in soon and produce some white cells, so her counts would go up and she builds her immunity.

Esha is keeping herself buzy with her art projects and she painted a lot of pictures lately. She is on to painting on canvas frames these days. She watches a lot of tv shows and her most favorite show now a days is Imagination Movers on Disney channel. She talks about those characters all day long and Warehouse mouse is her most favorite character.

Esha will be going to the hospital on Tuesdays for weekly blood tests. She is expected to begin the third cycle of maintenance chemo around the first week of Dec. This round would run for 8 weeks, with 2 weeks of hospital stay to get iv chemo. I will keep you all posted when she begins her next round.

Oct 22nd update

2008-10-22T19:57:00.000-07:00

Esha is doing well and is getting her blood levels checked every Tuesday. Her levels are normal this week. She is going back for another blood draw next Tuesday and is scheduled to go in for the next round of Chemo from Nov 5th on. She is doing good and is keeping herself busy with her normal activity.

Oct 13th update

2008-10-13T08:09:00.000-07:00

Esha was in the hospital from Oct 8th thru Sat, Oct 11th. She began her maintenance cycle 2 of 12 and she got spinal tap (chemo given to the spine) and high dose Methotrexate. She stayed at the hospital for 4 days and got discharged on Saturday evening, when her toxic levels came down to the required levels.

Esha will continue to go for the weekly blood tests for the next 3 Tuesdays. She is due for her next round of chemo on Nov 5th. She seems to be doing alright and is keeping herself busy with her normal activity.

Sept 30th update

2008-09-30T03:40:00.000-07:00

Esha is doing well and has been going for weekly blood tests to the Vassar bros. hospital, every tuesday. She got transfused with a unit of red blood cells last wed, 24th. She came up with a low grade temperature before the transfusion, so they gave her a dose of antibiotic and kept her in the ER for a few hours to monitor her fever, and sent us home that same night. She is doing good since then and is keeping herself busy. We took her to apple picking a couple of times and she absolutely loved it.

Esha will be going in for another blood test today and one on next tuesday. If the levels come back normal next tuesday, she will begin her next cycle from wednesday on. This would begin her 2nd 56-day cycle of maintenance.

Sept 16th update

2008-09-16T11:36:00.000-07:00

Esha was in the Westchester county hospital for 6 days and came back home yesterday. She went in on the 10th for an intrathecal (chemo given to the spine under sedation) and 5-days of chemo. For this round she got Cytoxan, Etoposide, Mesna and decadron everyday for 5 days. She got Vincristine iv on day one. She took the meds well and got discharged yesterday. She is doing well and is very happy to be back home. This round of chemo should have been done around Aug 20th. But Esha's blood levels took longer to recover and she got delayed by 3 weeks.

She is currently on Gleevec, daily med by mouth and we will start her growth factor neupogen subcutaneous shots from tomorrow, to help her build the white cell count. This is all she will get for the next 3 weeks. Since she received a lot of chemo, her counts are expected to go down within the next week or two and she may need blood/platelet transfusions later on. This current cycle will finish on the 7th of Oct. There's no scheduled hospitalization until Oct 8th. However, we will be taking her to the nearby hospital, Vassar Bros, for weekly blood tests and transfusions as needed.

This current cycle of maintenance that Esha began on July 23rd, and will finish on Oct 7th, will repeat 3 more times, with the same medications and schedule. This is a 58 day cycle originally, but got extended as Esha needed extra time for her counts to recover. When these four cycles are done, she will have to go through 8 more cycles which will be 58 days (or more) each. But these 8 cycles are mostly home meds that she would take by mouth, which means a lot less hospitalization hopefully. So, clearly we have a LOT more treatment left before us. But the fact that she's doing good and is so happy is what is pushing us forward.

It will be a year on Sept 18th, since Esha got diagnosed with Leukemia. So much has changed in our lives over the past year. Or should I say, pretty much everything has changed in the last year. We have come closer to each other as a family and have gotten stronger than ever before. Little things don't freak us out anymore, as we are onto bigger things now and are always looking at the big picture and thankful for each day that we have the day to live and enjoy together. Like someone once said, 'you could always reach your destination, but its the journey that makes a difference'.

Esha's mom.

Aug 31st update

2008-08-31T07:24:00.000-07:00

Esha received 3 blood transfusions in the last 10 days. She was originally scheduled to go in for her next round of chemo on Aug 20th. But it got delayed as her blood levels have plunged down since the previous round of chemo. Its taking her longer to recover, especially this current cycle. She is on the growth factor shots, since yesterday, to boost her white count and she received red cells and platelets earlier. At this point she is not on any oral chemo meds (no gleevec), and we are waiting for her counts to go up so we could start the next round. She is doing fine otherwise and is busy with her normal activities.

Aug 17th update

2008-08-17T13:17:00.000-07:00

Esha turned 5 on 8/8/08. We had a little party at home, within our family and her uncle flew in from San Jose. She had a lot of fun and was very excited at all the presents she got. It was a very exciting day for all of us too. She said she enjoyed every bit of it.

Esha is scheduled to go in for her next round of chemo from Wed, Aug 20th, if her blood counts look fine on Tues, 19th. Since she began her maintenance phase, she will be getting chemo (intravenously) once every 4 weeks for the next 6 months and then it will mostly be medication given by mouth at home. Hopefully a lot less hospitalization from March on.

She has been and will be going to Vassar hospital (a nearby hospital with no pediatric oncology unit) for blood tests every tuesday to make sure her counts are all ok.

Esha is doing well since the last round of chemo and is busy watching Olympics in the evenings. She always cheers for the team that wears blue dress, partly because she loves blue and partly because she thinks the US team always wears blue. Well, on day one the US beach ball team wore blue bikinis, she cheered for them , on the next day the Cuban girls wore blue and she started cheering for them :)

Aug 4th update

2008-08-04T10:13:00.000-07:00

Esha got discharged from the hospital last monday, July 28th, after her Methotrexate toxic levels went down. Since then she is home and is doing well, except for occasional belly pain, a possible side effect of Vincristine that she received last week. She went in for a blood draw last friday and her counts are all fine, at this point. On our way back home from the hospital, we stopped by at Stop and Shop and ordered her birthday cake. By the way, Esha is going to be 5 on Aug 8th. She ordered a pooh and tigger cake from the cake book for her birthday.

Esha will be going for another blood test tomorrow and and she may need some blood/platelet transfusion by the end of the week. Other than the belly pain, which comes and goes sporadically, she seems to be doing ok and is very excited about her upcoming birthday. She is pretty much done with her list of presents and what she wants for the day.

Please keep Esha in your prayers and bless this little girl who is such a charm to be around and has never complained in the past 10 months about what she's going through. On some days, she swallows as many as 13 tablets, without even asking why she has to take all those meds. Such little girls are a pure joy to have and please bless her with a long, happy and healthy life.

Thanks,
Esha's mom.

July 24th update

2008-07-24T07:47:00.001-07:00

The much awaited Maintenance phase began yesterday. Esha got a spinal tap (chemo into her spine) under sedation and had a little bit of her bone marrow extracted for testing. Then she got admitted in the hospital and they started infusing her the 24-hr high dose Methotrexate, which runs continuously until 10pm tonight. From tomorrow afternoon, she would be getting the Leucovorin rescue every 6 hrs until her body toxic levels go down to 0.1 or below. She will also be getting transfused with red cells, at some point tomorrow, as her hemoglobin is quite low now.

A little bit about the Maintenance phase, Esha will be going through 12 cycles of maintenance, each cycle is 56 days long. The first four cycles are alike and the last 8 cycles are alike. For the first 4 cycles, she will be getting a lot of intravenous chemo and spinal taps. The last 8 cycles would be mostly home meds and lesser hospitalization. For the first 4 cycles, she will be coming to the hospital once every 4 weeks and stays for about 4 to 6 days.

Esha was home for about 3 weeks, since the last chemo and she enjoyed every bit of it. When her counts got too low on July 12, we took her to the nearby hospital, Vassar Bros, and got her transfused with platelets and red cells and gave her growth factor shots to boost the white counts. She listens to us well and does exactly what we ask her to do, although she asks a million questions. This behavior of hers is coming in very handy at such a hard time and with all the complex treatments that she is receiving.

July 11th update

2008-07-11T17:01:00.000-07:00

Esha got discharged from the hospital on the 4th, after she got 4 doses of AraC and an intramuscular L-Asparagenase shot. Surprisingly, she did not cry a bit, when she got the shot. The nurse got her some Dora games which kept her super busy and she totally ignored the shot. We got home just in time for the fireworks. Both the kids enjoyed the fire crackers a lot. The moondance fountains and sparklers were a big hit.

For the next two days following the discharge, she got fevers, which were a side effect of AraC and were controlled by Tylenol. She went in for a blood test on Tuesday, July 8th. Her counts were low but not low enough at that time to give her blood. She's going back again for a bloodtest next tuesday. We are pretty sure she would need transfusion next week. She looks very pale. But is running around and playing well. She is getting the growth factor shots to boost the white counts, since the discharge.

Tomorrow, the 'Make a wish' co-ordinators are coming over to find out what Esha's wish is. We have been postponing the appointment with them for the last 9 months. We are finally letting them come over. Will keep you posted on what Esha wishes for. Check out their web site at http://www.wish.org/

Esha seems to be doing fine and is playing well and watching a lot of TV as usual.

July 2nd update

2008-07-02T16:10:00.000-07:00

Esha got admitted into the hospital this morning to get more chemo. This time she will be getting 4 doses of high dose AraC (Cytarabin), each dose 12 hrs apart. After 6 hrs of completing the last dose she will be getting an intramuscular shot, which would be the toughest part of this round, as the shot comes with a big, fat needle. I am hoping and praying the shot is not very painful to her.

She is getting the first dose of AraC now. We came in around noon and the chemo did not start until 6:30pm. We were waiting for over 6 hrs, in vain. I always wonder why the docs and hospitals have such terrible sense of time. When was the last time you walked into your doctors office and got called in within the first 30 mins?? It never happened to me!. Is there no value/respect for our time?? Its so frustrating!!

As far as this round goes, the last dose will be on friday morning and if all goes well, we should be home by friday evening, just in time, to fire some crackers for the 4th of July (American Independence day).

A few interesting developments at home. Esha's dad is building her and her brother a swing/slide set, sort of like the ones you see at the parks. It is industrial scale and heavy-duty and sturdy, in case mom wants to swing away too. Also, Esha's grandmother (Gopal's mom) who lives with us, has been sick for the last 10 days, with some sort of unknown sickness (it was first thought to be flu, then urinary tract infection, then stones in gall bladder etc.). She went in for a bunch of tests already and needs to be seen by a Gastroenterologist next week. She is completely down for the last 10 days and was in a lot of pain. She is somewhat better now and is pain free. Clearly, our duties, the bloodtests and the doc appts and other tests have doubled up. Hopefully its just a scare and nothing more than that and goes away soon. Gopal's brother flew in from San Jose, CA on Saturday to help us out. He will be staying with us until next saturday and is a perfect partner for Gopal to help out in building the swing set :) Esha and Sohan are very excited about it. Will post some pics when its all said and done.

Happy 4th of July everyone and stay safe. Once again, thanks to each and every one of you for reading the blog and for your special interest in Esha. While I don't know some of you personally, all I can say is you are very dear to us and are connected to our hearts in a very special way for caring about Esha, just as much as we do - Esha's mom.

June 26th update

2008-06-25T08:49:00.000-07:00

Esha went in for a bloodtest last Monday and all her blood counts were low to get her started with the next round of chemo, which was originally scheduled for June 25th. Her body is taking longer to recover from chemo as we go farther into the treatment. So they wanted to give her another week to recover.

She received a unit of red blood cells on Tuesday at the Vassar Bros. Hospital and is doing fine now. She will go in for another blood test on next tuesday, to see if she's ready for chemo next week. Meanwhile, she is enjoying her stay at home and is keeping herself busy with her favorite activities.

June 16th update

2008-06-16T18:12:00.000-07:00

Esha is home since last monday (9th). Her 5-day chemo went well and she got discharged last monday afternoon from Westchester Med Center. She is doing well except for really low blood counts. Obviously, all that chemo she received is working on her body. She went in for a blood test at the nearby hospital(Vassar) last friday and got transfused with a unit of platelets. She's going back for another blood test tomorrow morning and she may need blood (red cells) depending on how low her counts are.

Since her counts are so low, we are holding back her Gleevec tablets. She is on daily growth factor shots (subcutaneous) to boost the white cells.

Esha is doing well and as usual is keeping herself entertained and happy.

June 8th update

2008-06-08T12:06:00.000-07:00

Esha got discharged from the hospital on Monday afternoon (June 2nd). She took the last round of chemo (high dose Methotrexate) well. Her toxicity levels went down to the required levels by last monday morning and we were home by that afternoon. She is back in the hospital since wednesday morning (4th) for a scheduled 5-day chemo. She went home for a day and half, which was a nice break for all of us.

Esha got an intrathecal (chemo given into her spine) under sedation on wednesday morning (4th). She is getting etoposide, cytoxan and mesna intravenously (all three of them given every day) for the last 4 days. Tonight is her last (5th) dose. She was very nauseous on day one and threw up several times during the day. She is doing fine now and is on Zofran and Benedryl every 8 hrs round the clock. Her chemo is getting administered during the night, in her sleep. So she has the whole day for herself and is doing good.

Esha is getting a unit of red blood cells today before her last dose and we may get discharged tomorrow morning, pending no fevers or other problems. Her next chemo is scheduled for June 25th, if her counts are back to normal, by then. Until then she has no scheduled hospitalization, if all goes well. She will however go in for weekly blood tests at the nearby hospital (Vassar Bros).

Here at the hospital, she seems to be doing good and is keeping herself bz with the books, play dough, wii - Diego safari game, art projects and watching TV. She is all excited about going home and riding her bike and working in her vegetable and flower garden. She is very upset that the squirrels ate her strawberries just when they were ready for picking :( She came up with some interesting ideas to keep those squirrels away from her plants. We can't wait to go home to try out some of those ideas. Will keep you posted.

May 30th update

2008-05-30T10:27:00.000-07:00

Esha got admitted in the hospital last night and is getting her chemo (high dose Methotrexate aka HD MTX) now. She was supposed to begin her chemo on wednesday but there were no available beds and she had to wait until thursday night to come in, also her urine levels were not ready until now (since admission) and then the prepared chemo leaked, adding to the delay.

This round of chemo would be exactly the same as the last one. She gets HD MTX intravenously for 24 hrs. After 42 hrs of beginning the hd MTX, she would get Leucovorin rescue intravenously for every 6 hrs until the toxicity levels in her body go down to 0.1, at which point she gets discharged.

Esha is scheduled to begin her next round of chemo (for 5 days and more intense round) on next wednesday. So between these two rounds she may get to go home for a day (may be) and come back next wednesday.

She is doing well and is keeping very buzy with her favorite activities. At home she enjoys riding her bike during evenings.

May 22nd update

2008-05-22T10:42:00.000-07:00

Esha got discharged from the hospital last saturday afternoon (May 17th). Before the discharge, she got transfused with a unit of packaged red blood cells. She had low grade temps for the next two days at home (could be from the transfusion). She is doing good now and is currently on the neupogen growth factor shots (subcutaneous) daily.

Esha will go in for a blood test next Tuesday, May 27th and based on how her levels are, she may get started with the next round of chemo from wednesday (28th). She is enjoying her stay at home and is delighted that her uncle (dad's bro) is visiting us from San Jose (with a ton of gifts :)).

May 14th update

2008-05-14T13:40:00.000-07:00

Esha is back in the hospital and began her next block of treatment this morning. She got a spinal tap (chemo injected into the spine under sedation) and is getting her high dose methotrexate (HD MTX) now, which would run for about 24hrs intravenously. This would be followed by a Leucovorin rescue, an iv med given to reduce the toxic levels in her body. When her toxic levels go down to 0.1 she gets discharged from the hospital. So at this point we are looking at a possible discharge over the weekend.

This current block of treatment was supposed to begin about 4 weeks ago but she needed all this extra time to recover from the previous rounds of chemo. The past ten days have been pain free and Esha was very energetic and back to herself. A trip to the ToysRus cheered her up further over the weekend. She seems to be doing well now and is busy with her art projects.

May 7th update

2008-05-07T13:15:00.000-07:00

Esha got discharged from the hospital on Sunday, May 4th. While at the hospital, she received a unit of platelets and red cells each. She also got neupogen shots to bring her white counts up. The blood test on Tuesday, 6th indicated that she is still not ready to begin the next round of chemo yet. She was supposed to begin the next block about 3 weeks ago. But her body is taking longer to recover from the cumulative effect of chemo she got so far.

Her blood counts are stable now and the viral screening tests done last week, to check for the presence of EB and parvo virus came back negative. She is not on any chemo meds at the moment and is a free bird and is enjoying her stay at home.

May 1st update

2008-05-01T11:05:00.000-07:00

Esha had a bone marrow aspirate (a lil bit of marrow is extracted under sedation and tested for the presence of leukemia) done yesterday and then she got admitted in the hospital.

Last tuesday's blood work indicated that Esha is not ready to begin the next round of chemo yet and also her counts have gone down (instead of going up) from the week before. This kind of pattern made the doc suspicious as she is not on any medications for the last 2 weeks and they thought it could either be due to an infection or some sort of Leukemic activity going on in her bone marrow. So they wanted to do a bone marrow aspirate to determine the possible cause of this. This phone call scared us a lot, and we spent a restless day and a sleepless night worrying and praying that they say its just an infection. Just one scary phone call like this is enough to turn your world upside down.

The preliminary results from the bone marrow testing indicated that there were no leukemic cells. This came in as a great relief. They thought the counts could be going down from a viral infection known as Parvovirus. They administered IVIG (immunoglobulin) thru the iv. The IVIG is expected to take care of the virus and make the levels go up. There was a little glitch in the administration of ivig, when Esha developed chills and fever and they had to stop it and administer it at a much slower rate later during the night. The fever subsided subsequently and she slept well thru the night.

Today she's getting transfused with a unit of platelets and seems to be doing alright so far. From today on, she will be getting the neupogen growth factor shots to boost her white counts and she may get a red blood cells transfusion as needed. We will be here at the hospital until the blood count starts to go up. All in all, April was a pretty painful and scary month. I am hoping that the month ahead will be somewhat quite and event free. At this point we are just waiting for the levels to go up and the blood test results to confirm the presence of the virus.

April 24th update

2008-04-24T13:43:00.000-07:00

The blood test done on Tuesday, 22nd indicated that Esha is not ready to move on to the next block of treatment yet. Her red cells, platelets are too low and she got transfused with one unit of each yesterday at the Vassar bros. hospital (about 10 mins drive from home). Esha and mom were at the hospital almost all of yesterday as she received the blood. Esha has been running low grade temperatures for the last two days, but the doc is not very concerned as she is not neutropenic ( her white counts are ok).

She had a low grade temp thru the transfusion and after. Knowing her history of febrile seizures, we are a bit worried about these nagging temps, they are under 101 so far and we are monitoring her very closely.

Her leg pain is gone now and she is back to herself and is keeping bz with the art projects, watching tv and coloring. She will go in for another blood test next tuesday, 29th to see if she's ready for the next block from wednesday.

April 20th update

2008-04-20T01:58:00.000-07:00

After a week long stay at the Westchester hospital, Esha got discharged last thursday (17th). She still has leg pains off and on, which are severe at times. She wakes up in the middle of the night with severe leg pains and tylenol seems to be helping her only so much. She was very weak and seemed very tired on thursday and friday. She seemed somewhat better yesterday. She is still not fully recovered from the last block of treatment and is not being herself. Her appetite has also gone down and we are working on that.

The CT scan that she had while at the hospital (with severe rectal/stomach pain), came back normal. Also the results from the last bone marrow aspirate showed she is non-Leukemic. At this point she has no Leukemic cells, but she still needs to go thru 2 more years of treatment to prevent Leukemia from coming back.

She is going in for a blood test on Tuesday, 22nd and based on the results, she may get started with the next block of treatment from 23rd. Currently she is not on any chemo meds (no gleevec, no neupogen shots etc until the blood test on 22nd), which seem to be helping her a bit.

April 14th update

2008-04-14T06:39:00.000-07:00

Esha is back in the hospital from thursday, April 10th night. She came in with severe rectal pain, which could be from an infection in the rectum or that part of the digestive tract. Since then, she's been on Morphine for pain control and antibiotics. Her counts are still very low (white count is 0.2 - its normally around 11). She is getting severe itching as a side effect of the morphine and the anibiotic (Meropenem) so they changed her antibiotic to Zosyn and she still continues to get the itch, although its a tiny bit better now. She is getting Benedryl as needed for the itching.

Since the admission on thursday night, she is also receiving the Growth factor (neupogen) shots to boost her white counts, which is causing severe pain in the legs. The growth factor causes the marrow to produce more cells and hence the pain in the legs.

Between the rectal pain, leg pain and itching she is very uncomfortable and the morphine and benedryl are making her feel drowsy a lot. Today she is getting a CAT scan done to find out if there's an abscess which could be causing the rectal pain. At this point, we are eagerly waiting for her counts to go up and the pain to ease so she won't feel as miserable.

April 9th update

2008-04-09T17:12:00.001-07:00

Esha went in for another spinal tap this morning. She got chemo delivered into her spine, under sedation. She also got Vincristine intravenously. Her blood counts are very low. She received a unit of platelets before we came back home. The red cells count is border line low at this point and she didn't get any red cells. Her white count is 0.2 with absolutely no immunity what so ever. We are waiting for her white cells count to go up on their own, she's not getting any growth factor shots currently. She's been sleepy all day long, from the anesthesia and the benedryl and lack of sleep for the last several nights.

Ever since she got discharged from the hospital on March 30th, she has been suffering from pain in her legs off and on. The pain is intense at times and it keeps her up at nights sometimes. The doc said it could be from the decadron and vincristine that she is on now. This block is short with just 21 days but the combination of meds that she gets is notorious in terms of the side effects they cause. For the reminder of this block she is on Decadron (steroid). Technically, this block ends on April 15th but whether the next block begins from the 16th or not depends on her blood levels on 15th.

She is weak and looks tired but is keeping up with her projects, tv shows and is into her painting/coloring as usual. The best thing about Esha is that she never complains or cries at all the poking she has to deal with and at the numerous hospital visits/stays, which makes this whole thing seem a lot more easier than it actually is. She's a good kid with a great attitude.

March 29th update

2008-03-29T08:33:00.000-07:00

Esha began her next block of treatment (Reinduction - block 2) on wednesday, 26th and is currently getting her chemo in the hospital. She had her spinal tap (chemo into spine) and bone marrow aspirate done on wednesday morning, under sedation. The results from bone marrow testing would be in out a couple of weeks. Later on, they moved her into her room upstairs and got her started on Daunorubicin. She received two doses of this on wed and thursday. Cytoxan began from Friday afternoon. She already got two doses of this and will get two more by tomorrow morning and is expected to be discharged on Sunday (30th) morning. Before discharging, they will administer an intra muscular Peg-Asparaginase shot, which is a very painful one and she cries a lot.

She has been getting Benedryl every 8 hrs since wednesday and is sleeping most of the time. She's not as active as usual and is kind of droopy almost all day long and is not getting much sleep at night, as a result of that. At some point today, she will be receiving 1 unit of packaged red cells as her red cell count is borderline now but would only go down within the next couple of days.

She will also be getting the growth factor sub cutaneous shots at home, for 10 days, to boost her white count. She is on Dexamethasone, a steroid for 2 weeks this block, this causes mood swings and apetite changes, she's expected to be grumpy based on the past experience. All in all, we can't wait to go home. This block is short, it runs for only 21 days but the chemo she receives during this block is aggressive.

She is trying to play while she is awake and do puzzles and coloring. She did some wonderful paintings last time we were at the hospital, that we donated to a charity to raise some funds for the childrens fund. Lately she is all into mathematics. Additions and subtractions are her favorite thing lately. Its a lot of fun to watch her borrow others fingers as she does the 2 digit additions/subtractions.

March 24th update

2008-03-24T08:43:00.000-07:00

Esha got discharged from the hospital last wednesday (19th) and since then she has been enjoying her stay at home. She went in for a blood test last friday and her blood levels looked fine. So what that means is that she is ready to begin her next block of treatment.

The next block of treatment, which begins on wednesday, March 26th, lasts for 21 days. She will first go in for a lumbar puncture (to inject chemo into the central nervous system under sedation) and she will also have a bone marrow aspirate ( a little portion of bone marrow is extracted from her thigh bone, under sedation and will be tested for Leukemia). Her chemo will begin at some point later that day. She will be getting Daunorubicin and cytoxan for 2 days each, followed by an intra muscular Peg-Asparaginase shot. I think we will be staying at the hospital for at least 5 days.

She is playful and is doing well now. Last night we got her pizza from pizza hut, after 6 months of strictly sticking with home made food. She got very excited and ate it with a lot of passion but couldn't keep it down, she ended up throwing it. So no more take-outs for a long, long time.

March 14th update

2008-03-14T19:07:00.000-07:00

After receiving high dose AraC for over 2 days, Esha got discharged from the hospital last friday, March 7th. Since then she has been getting neupogen shots subcutaneously (to boost her white cell counts) everyday. She was weak and seemed tired the whole week, but was playful and in her usual good spirit.

This morning she went in for a routine blood test and her counts came out really low. She got transfused with 1 unit of platelets and 1 unit of red blood cells. A big thanks to all those who donate blood!!! She had low grade fever before and during the transfusion and so she got admitted into the hospital. They ran some blood culture tests and the results should be out in a couple of days. Her immunity levels are close to 0 and she is severely neutropenic (poor immunity), which is probably why she has the low grade temps. Hopefully, there's no infection. But they got her started on the antibiotics anyway. If her temps go away, she should be home in about 3 days. She was a trooper thru the the transfusion and kept coloring and playing with the puzzles.

March 5th update

2008-03-05T10:37:00.000-08:00

Esha is back in the hospital for her next round of chemo. She got admitted on Tuesday, March 4th. She will be here for a couple of days. Since her blood counts are low, she first got transfused with a unit of red blood cells, before the chemo began last night.

This round of chemo consists of 4 doses of Arac (Cytarabin), followed by the intra muscular L-Asparaginase shot. She is receiving her 2nd dose of Arac, as of now and is very nauseous from the medicine but she is in good spirits and is playful. She had a busy morning with music therapy and the clown's visit and magic show cheered her up. Will update more when we get home.

Feb 27th

2008-02-27T11:38:00.000-08:00

Esha is home now and is doing well. She got discharged from the hospital on 17th. During her stay there, she received chemo (Etoposide, cyclophosphamide and mesna) for 5 days. She took the chemo well and as expected, her counts got very low after the chemo. She received one unit of red blood cells on the 21st. She had a blood test on 25th and her levels are currently good and she doesn't need any transfusions right now. She is due for another blood test next monday, march 3rd. Based on the test results (if her levels are good), she could get admitted again on March 5th for the next round of chemo.

Since the discharge, she's been receiving neupogen shots, subcutaneously, at home for the last 9 days. Today is her last one for this block.

Her dad came back from India on the 19th and his parents have moved in with us over the weekend. Its nice to have some extra help. The kids are happy to see their grandparents. Esha is keeping busy with her usual stuff, arts projects and watching tv.

Feb 14th

2008-02-14T19:45:00.000-08:00

Esha got admitted into the hospital on Tuesday (02/12) evening and got started with the chemo on Wed. She received chemo intrathecally ( delivered into her spine to prevent Leukemia from entering into the central nervous system), under general anesthesia.

This current round of chemo will last for 5 days and each day she receives Etoposide, Cyclophosphamide and Mesna intravenously. She is also getting Zofran and Benedryl, every 8 hrs for these 5 days.

On a much lighter note, Sohan ( Esha's brother) turns 3 tomorrow (they are 18 months apart). Gopal (Esha's dad) left for India this morning on a 4 day trip, for his brother's wedding and he is returning on Tuesday morning. Right now mom is dealing with the two of them, single handedly. Oh Boy!! I tell you its very hard!!! We had a little birthday cake for him today at the hospital, before dad left. He was happy about the cake but got disappointed that there were no party hats and no candles on the cake, especially that there were no goodie bags. We promised to get him another cake with all that fun stuff when we get home.

Despite all the anti-nausea medicine that she is getting, Esha is still very nauseous, especially during the evening time. Her apetite has gone down with all the chemo that she is getting. But her spirits are high, as always. She made Valentines day cards and other crafts today and played endlessly with her playdough. She also went into the nearby playroom and had a lot of fun there. A visit from Ronald Macdonald cheered her up further.

Happy Valentine's day everyone!! Will update more when we get home.

Feb 06th, 2008

2008-02-06T17:47:00.000-08:00

Esha is still in the hospital. She got admitted last thursday night, Jan 31st, with fever. Her chemo was actually scheduled for Jan 30th, but since there were no vacant beds, it got delayed. Can you believe this?. In a children's hospital with over 50 rooms, not even a single bed was available and we heard there were 21 kids on the waiting list. What in the world is going on????

So all of wednesday and thursday, we waited for the room to open up. But by thursday night, she got a fever of 101 with cough. We drove her into the ER where she stayed until the following day when they found her a bed. She had to wait until the fever subsided to get her chemo. Her blood cultures came back negative. So there's no infection. She still got the antibiotic for 4 days.

She got started on the high dose methotrexate on Monday night, which ran continuously for 24 hrs. She is now being monitored for the toxic levels, after high dose meth stopped. Currently her toxic levels are at 2.1, when it gets under 0.1, she gets to go home. She is getting the Leucovorin rescue every 6 hrs, which started this evening, this would help in bringing her toxic levels further down. So we are hoping that she would get discharged tomorrow. Lets see how that goes.

Esha is doing well and keeping herself busy at the hospital with various coloring, painting activities. Except being nauseous, she's doing well.

Her next round of chemo is expected to start from Feb 13th, when she would get a lumbar puncture, to deliver chemo into the spine (to prevent Leukemia from getting into the central nervous system) and receive Etoposide, Cyclophosphamide and Mesna for 5 days. Will keep you posted.

Jan 29, 2008 update

2008-01-29T07:24:00.000-08:00

Esha is getting admitted into the hospital tomorrow for another round of high dose Methotrexate followed by the Leucovorin rescue. We are expecting her to get discharged over the weekend. She had her blood levels checked on the 24th and didn't need any transfusions since the last round of Methotrexate. Tomorrow they will check her blood levels again before getting her started on the chemo, to see if she needs any blood.

Sohan (Esha's brother) came back from California on Jan 23rd. He was gone for about 7 weeks and they obviously missed each other a lot. Their reunion was great, they hugged and kissed each other and they both are having good time together. Of course, they still fight a LOT, but I guess that's their way of loving each other.

Jan 21st, 2008 update

2008-01-21T14:22:00.000-08:00

Esha was in the hospital from Wed, 16th thru Sat, 19th. We are back home now and she is doing well. She is active and playful.

Jan 16th:-
Esha got admitted into the hospital around 2:30pm to begin her next block of chemo, Intensification block 1. They got her started on the iv fluids and started infusing her with high dose methotrexate around 10pm. She kept getting Benedryl and Zofran every 8 hrs round the clock, for these 4 days. She did very well throughout the infusion and was very playful.

Jan 17th:-
The high dose methotraxate kept going continuously for over 24 hrs until 1 am on Jan 18th. She did very well throughout the infusion. She played and watched tv and took a walk to the playroom in the hospital and took part in the music therapy and sang songs.

Jan 18th:-
She was given Leucovorin ( the rescue from high dose methotrexate) starting from 4pm Jan 18th and got this every 6 hrs. Her blood test results from this morning revealed that the toxic levels of high dose methotraxate in her body are already coming down, which was quite a pleasant news and Esha did great thru the day.

Jan 19th:-
Esha received 2 more doses of Leucovorin rescue this morning and her toxic levels came down to 0.1 and she got discharged from the hospital and we were home by 2:30 pm.

Since she got home, she has minor problems like mouth sores and an occasional headache but for the most part she's doing good. She's due for a blood test and checkup on Thursday, Jan 24th. Her next hospital admission would be on wed, Jan 30th for the same medicines that she received this time.

Meanwhile, Sohan (Esha's 2 yr old brother) who is in San Jose, CA with his uncle developed urinary infection and dad went to bring him back home, two days before his scheduled return. We are waiting for his return eagerly. Esha is helping out with cleaning up his room and is busy hiding her stuff :)

Jan 15th, 2008

2008-01-15T17:05:00.000-08:00

Esha had her blood levels checked this morning and her counts are at a level where she could get started with the next block. So, she's getting admitted into the hospital tomorrow. She would be staying there for about 5 days or so.

She's doing well and is in a happy mood for the last several days, but this will drastically change from tomorrow with the beginning of chemo. But we would much rather have her on chemo and be grumpy than being happy without chemo.

She will go back on Gleevec from this evening. This is the magic tablet that prevents the production of Bcr-abl (the protein produced by philadelphia chromosome, which feeds the leukemic cells). Will update again when we return home.

Jan 10th, 2008

2008-01-10T10:49:00.000-08:00

Esha's blood counts are still very low to get her started on the next block. So she's not on any chemo meds this week also. Yesterday, she got transfused with 2 units of red blood cells and is doing well. Today we will start giving her the neupogen shots (sub cutaneously) at home, for the next 5 days or so, to help her build her white blood count.

She's actually doing well and watching a lot of tv shows, including the commercials (scary !!) and wants everything that she sees in those commercials. Her latest favorite is the Betty crocker 101-pc cake decorating kit that she wants so badly :) She keeps talking about how useful the set (and the scraping knife that comes with it) is in the kitchen ALL the time. So we better get it for her.

Even with all her low counts, she is energetic and is very playful. She will be going in for a blood test on the 15th, to see if she will be ready for the next block.

Jan 4th, 2008

2008-01-04T09:37:00.000-08:00

There was a slight change in the plan and Esha did not get admitted on Jan 2nd, as her platelets dropped to a very low level. She just had the chemo delivered into her spine and they sent us back home. Yesterday, she got transfused with one unit of platelets and is not on any chemo meds for this week, which is nice but scary.

She is emerging out as her usual self with no meds to take and is back to watching tv and wanting to bake cookies and the usual things that she likes to do. She will go in for a blood test on next tuesday, and if all the levels look good, she will get started on the next block from next wednesdy(Jan, 9th). But for now she is happy to be home with no meds to swallow.

Jan 1st, 2008

2008-01-01T11:38:00.000-08:00

Happy new year everyone. Esha had her blood levels checked yesterday and she is ready to begin her next block of Chemo starting, Jan 2nd. She will be admitted into the hospital tomorrow and will stay there for about 4 days. This block is a lengthy one, lasting for 63 days and going well into the first week of March, with several planned hospital stays.

Esha seems to be weak and is not being herself since the past week. She's tired most of the time and is not watching much of her favorite tv shows either, which is very unusual for her. This could be from the dexamethasone (steroid) that she is on, during this current block. Thankfully she will not be on that drug from tomorrow until March and she should be back to herself pretty soon.

As we are entering the new year, we are looking forward to an year filled with a lot of hope, healing and good health. Also wanted to take a moment to thank each and every one of you for showing your support in some form or other. Thanks for your prayers, kind words, gifts, toys, cards, emails and for checking on her progress. Esha received a TON of gifts. What amazed us was the fact that even perfect strangers stopped by and dropped off presents at the hospital. This just keeps reminding us that we are surrounded by a ocean of caring, generous and kind people.

Also, there's a very special person that deserves a true 'thanks' from us, who played a monumental role in the early diagnosis of Esha's medical condition. Its her teacher at the day care, Ms. Marianne Muggenburg, who noticed that something was not right about Esha and brought to our attention that Esha was not doing well at school for few days before her diagnosis and she suggested asking the doctor to run a blood test on Esha, the day she got diagnosed. That very blood test revealed 4 leukemic cells. If not for Ms.Marianne, Esha's diagnosis would have been delayed. Thank you so much Ms.Marianne. We are indebted to you!

Also on the onset of this new year, we urge everyone to please consider registering with nmdp.org and donating bone marrow to save lives. If you are not in a position to donate marrow, at least consider a blood donation and please continue to keep Esha in your prayers.

Happy New Year!!

Dec 28th 2007

2007-12-28T14:51:00.000-08:00

Esha developed fever on Christmas Eve (Dec 24th). We rushed her to the ER around mid night. Complete Blood Count indicated very low White cells (0.4), Platelets (19) and Red cells (9.3). She was transfused with a unit of platelets the same night (which helped tremendously) and is back on neupogen for boosting her immune system. We spent our Christmas at the hospital. It felt a little weird. We waited in the hospital until the 27th before she was discharged. She still has very low RBC and the doctors wanted to wait before any transfusion. Today (28th) she is feeling very tired and was sleeping most of the day. She is very cranky and is not her usual self. We would be checking back into the Doctor's office on Monday for a CBC. We hope her White & Red Blood Count will improve in the mean time.

Dec 21st update

2007-12-20T19:05:00.000-08:00

Esha was in the hospital for 5 days and came back home on Sunday, Dec 16th. This is a recent picture of Esha driving the fire truck at the hospital.

Dec 11th, 2007 :-

Esha went for a quick blood test to see if she's ready to begin the next block of treatment and sure enough her levels came back good and she got started on the Reinduction block from Dec 12th.

Also, today she got to meet her best friend, Roni, whose visit cheered her up a LOT. She finally got to see him after about 3 months. She was excited all day long waiting for him and they had a lot of fun together.

Dec 12th, 207:-

Esha had her lumbar puncture and got intrathecal triple therapy (methotrexate,hydrocortisone, cytarabin) injected into her spinal cord. This is done prophylactically to prevent the leukemia cells from entering the central nervous system and her bone marrow was aspirated to check for the presence of luekemic cells.

Later that afternoon she got transfused with a unit of red blood cells and started on chemo. She got Dexamethasone and Daunorubicin and Vincrestin (given weekly on wednesday for the next 2 weeks). She was a little bit tired from all the action going on and drowsy from the benedryl that she's been getting every 8 hrs. She got her echocardiogram (ECG) before they got her started on the chemo. They will be using this as her baseline ECG.

Dec 13th, 2007:-

Esha is nauseous from the chemo and threw up a couple of times since lastnight. Today she got the same meds as she did yesterday. She is on Zofran and Benedryl, every 8 hrs which is making her very sleepy. She had a good day and was playful.

Dec 14th, 2007:-

Esha got cyclophosphomide twice today. Her apetite seems to have gone down. She is sticking with a few selective foods that she manages to gulp down. She's been sleeping and playing well.

The funny thing is Santa Claus came to visit all the kids in the hospital and Esha was not too sure about him and stayed away from him. She somehow managed to get her present and goodies from him though. Later she said she got scared of Santa.

Dec 15th, 2007:-

Esha got cyclophosphomide twice today. Her apetite is still not good and she prefers to eat only a few selective foods. In general, she was grumpy and moody. We are aware that the dexamethasone (steroid) that she is on causes mood swings and are trying to cope with her sudden mood changes.

Dec 16th, 2007:-

Esha got a Peg-asparaginase shot today, given intramuscular. She cried a lot and was very upset. Both mom and dad felt terrible as the nurse stuck the 2 and 1/2 inches long needle in her thigh. She slept right after the shot.

Frosty, the snow man and his friends performed a dance recital for the kids and that cheered her up. Later on, Winne the Pooh, tigger and Eeyore, the donkey, came to visit her in her room. She was not in a mood to get her picture taken with them, but she was very excited to see them.

Later that afternoon, we got discharged and made our way back home safely in all that snow.

Dec 20th, 2007:-

This morning, Esha went to the day hospital for a routine blood test and also to get her 2nd round of vincristine. Her levels came back good (NO transfusions for now), except that her potassium is little low, which could be causing her headaches.

Also the results from the bone marrow aspirate done on Dec 12th came back very good. There were no leukemic cells detected in her bone marrow and there was no bcr-abl (the protein that philadelphia chromosomee produces which feeds the leukemic cells) protein, which means Gleevec is working well.

Esha has been getting headaches, since we got home on the 16th. They last for a few minutes, but are severe and she cries a LOT as she gets it. They occur a few times in a day. She is nauseous at times, but otherwise doing fine and watches a lot of Dora, Diego and her other favourite shows on tv. She is trying to be her usual self and is working on her art projects as usual.

Merry Christmas everyone !!

Dec 12th 2007

2007-12-12T16:29:00.001-08:00

Esha was admitted into the hospital for her next round of chemotherapy. Her RBC counts are low to start the Chemo. So she is being transfused with RBC before any chemo. During this round she would get Danorubicin, Vincrestine & Decadran. Will keep posted on details soon.

Dec 7th update

2007-12-07T12:40:00.000-08:00

Esha was taken to the day hospital on Dec 6th, for a routine blood test and all her levels came back normal. No more neupogene shots(daily given subcutaneously to build her white blood cells) for this block...this is a WOW for all of us, especially her. A little break from all that poking!!!

Her next appointment is on Tuesday, Dec 11th for blood test. Based on the test results we will know if she will start her next block from Dec 12th or not.

Also her bone marrow test results from Nov, 21 came out promising. Gleevec seems to be working well.

Its worth mentioning about Esha's 2-yr old brother, Sohan here, whose life style has dramatically changed, since her diagnosis. He is having a tough time coping with all the sudden changes that we forcefully put him thru. In order to give him a little break and in the best interest of both the kids, we decided to send him to San Jose, California, to stay with his uncle and aunts for a couple of weeks, so he can have some life and live like a 2-yr old again. He will be missed a lot but he will get a nice break, which he so honestly deserves.

Roadmap

2007-12-07T12:35:00.000-08:00

Esha is being treated as per the Children's Oncology Group (COG) protocol. The presence of Philadelphia chromosome puts her in a very high risk category of ALL (Acute Lymphoblastic Leukemia). Below is the roadmap of her protocol.

Phase 1 : Induction (or Remission Induction); length: 28 days; treatment period: Sep 21 - Oct 18, 2007;

Phase 2 : Consolidation - Block 1; length : 21 days; treatment period: Oct 31 - Nov 20, 2007;

Phase 3 : Consolidation - Block 2; length : 21 days; treatment period: Nov 21 - Dec 11, 2007;

Phase 4 : Reinduction - Block 1; length : 21 days; treatment period: Dec 12, 2007 - Jan 1, 2008;

Phase 5 : Intensification - Block 1; length : 63 days;

Phase 6 : Reinduction - Block 2; length : 21 days

Phase 7 : Intensification - Block 2; length : 63 days

Phase 8 : Maintenance - this phase consists of 12 cycles. Each cycle consisting of 56 days of treatment. The first 4 cycles use the same set of medications and the last 8 use a different set.

Dec 4th update

2007-12-04T11:35:00.001-08:00

We were at the hospital, since thursday, Nov 29th for 5 days and got back home last night.

Nov 29th:-

Esha was taken to the day hospital for a blood test on the 29th morning and her levels were low. So they transfused her with one unit of red blood cells around 4pm, which took over 2 hours. They first premedicated her with benedryl and tylenol, before starting the transfusion. Esha had a low grade temp before and during the transfusion and it seemed to have gone by the time the transfusion completed.

We got home by 8pm and had dinner and the kids got a shower when Esha's temp came back again and it went up to 102.7 At this point we called her doctor and we were asked to bring her into the ER. Since her brother was in bed already and we didn't want to disturb him after being at the hospital all day long, dad decided he would drive her to the hospital all by himself.
Up until this point, we have all been going to all her appointments together. Dad rubbed the magic cream (Emla) on her port, gave her tylenol around 10pm and left for the hospital.

At around 11:15pm, they reached the ER and got admitted. The doc accessed her port, drew blood for testing for any infections and put her on fluids. At that point, dad informed the ER staff about her previous history of febrile seizure, that she had due to fever suddenly shooting up when she was a 23 month old baby. The nurse said he would give her some tylenol around 2am as he would have to wait for 4 hrs after the 10pm dose she got at home. Dad was awake up until 1:45 am or so and dozed off for about 30 mins when she woke him up around 2:15am and said she was nauseous. So the nurse got her some zofran and dad had him check her temp again. At that point, her temp was at 106. Dad freaked out and put wet cloth all over her body and the doctor was called. She ended up having a seizure in the doctors arms. They gave her anti-seizure medication to releave her after about 2 and 1/2 mins of the episode. She tried to talk after this episode, her lips moved but no words came out of her mouth. She was very drowsy from the anti seizure medication and got knocked down immediately. She slept for well over 5 hrs and woke up tired in the morning but didn't remember anything about the seizure.

Both dad and mom got mad at the lack of responsibility and the sense of urgency the ER staff lacked towards her situation. Despite being told about her preexisting condition they just ignored to give her medication on time. Had they given her tylenol around 2am, she wouldn't have had the seizure around 2:45am. This episode of the febrile seizure could have been perfectly avoided. Her treating physician agreed that she should have been given tylenol or something else and that would have prevented her from having a seizure.

We brought the ER incident to the upper management of the hospital and how the seizure could have been avoided if the ER staff were a little more deligent and acted upon it on time. Hopefully they will take some measures to make sure that no such mistakes happen in the future with any child.

Nov 30th:-

Esha was releaved from the ER and got admitted into the hospital few hours after the seizure and Mom and her brother came over from home early in the morning and we were releaved to see her play normally and she seemed to have no idea of what happened to her earlier that morning. She got checked by her treating doctor and the attending physician. She was refered to the neurologist, who suggested an MRI on her just to confirm that the seizure was from the high fever and not due to anything else going on in her brain, which she is scheduled for Dec 3rd. She is on heavy doses of antibiotics (cephaphime and vancomycin), to take care of any infection that may be present.

Her white blood cell (WBC) count is 0.3 which is extremely low, normal levels are between 11-17. Basically the target of Chemo is to get the WBC count to close to 0 and wait till her
body produces the new, cancer free cells. The neupogene shots that we give her subcutaneously at home help to build the WBC levels. When the levels are this low, she could catch an infection very quickly and it could be very serious.

Dec 1st:- Esha is still on high doses of antibiotics (cephaphime and vancomycin). So far they haven't detected any infection in her and the high fever she had could be due to the transfusion itself. Her blood was drawn to check her levels in the afternoon and her platelets were low, so towards the night they transfused her with one unit of platelets and she got monitored closely for fever. She didn't get any fever but her blood pressure (diastalic) was low which the doctor thought was ok, and it came back to normal towards the morning. Her WBC levels are going up, at this point it is 0.5

Dec 2nd:- Esha is still on the antibiotics and seemes to be doing fine. She worked on her arts projects and watched a lot of disney shows. They will not be doing a blood test on her today. So not much action going on today. She is refusing to stay in the hospital room for longer periods and is asking to be taken out in the play areas. But her white counts are still very low and mom and dad are trying to avoid her getting in contact with other kids/toys, as much as possible. Its hard to put her in a bubble to keep her safe, but if that's what is needed, she doesn't have much of a choice.

Dec 3rd:- Esha has been fasting since last night as she is scheduled for a brain MRI this morning. She had it done around noon. She was put on sedation and the whole procedure took well over an 1 and 1/2, and thankfully the results came back clean. Her blood was drawn in the morning and her levels came out fine. Her WB count went up to 1.9 which is good and the platelets transfusion she received made her platelet count go up nicely. We were discharged around 4pm and her port was de-accessed. We were home by 5pm.

Dec 4th:- We are all happy to be back home. She is a free bird for the next few days and the only thing she is unhappy about right now is the subcutaneous shots, we give her in the mornings. Her next appt is on thursday (6th) morning and we will keep you posted.

Thanks a lot for all your support. Your emails have been very encouraging and motivating. We truely appreciate them.

Nov 26th update

2007-11-26T07:36:00.000-08:00

Nov 26th - Esha was admitted into the hospital her second block of consolidation treatment on November 21st. Her bone marrow was extracted and sent cytogenetics & fish analysis. It would be around 10 days before we get to know her progress and how well does the miracle drug gleevec work her. Can't wait to know.. During this block Esha received much higher doses of chemotherapy (methotrexate, Cytarabine ) and leucovorin (as recovery drug from methotrexate). Methotrexate really knocked her down on Wednesday & Thursday (22nd). She had some nausea incidents as well as elevated glucose levels. Doctors took her off of dexamethasone which provided the required relief on glucose. Her potassium was little low, which was corrected with fluids. By Saturday (24th), her toxic levels of methotrexate were less than 0.1 She developed low grade fever over the night. Tylenol provided the relief and we were back to home on Sunday (25th). She still has very low grade fever and will be watched. Esha is back on Neupogen to help with building her white counts. We are waiting to hear from the doctor today on when her next exam is. Will keep posted.

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Nov 19th update

2007-11-19T17:09:00.000-08:00

Nov 19th - We were back at the hospital on Nov12th. The nurse accessed her port for blood draw with little return. We were informed that it might be due to clot at the end of cath. She was injected cathflo (medication to relieve clots). We waited for an hour for the med to work. Finally there were little blood return but it wasn't her usual full gush. Still there was enough for a blood test. We waited for the blood report and learned that her white counts were pretty good. So the doctor ordered to relieve her of the neupogen shots (which Esha loved ). We will be back in the hospital on Nov 20th for her counts bearing which we will be admitted into the hospital for her next round of chemo. Over this weekend she had quite a bit of hair loss with lots of itching. So she decided to shave her head off. She looks cute in the picture here..

Esha - Phase 2 - Consolidation

2007-11-01T17:04:00.001-07:00

November 8th 2007 - Esha was released from the hospital on the 5th after 5 days of intense chemo. She felt tired and week during the therapy but a blood transfusion helped her back to spirits. Over the course of these 5 days she learned to swallow pills (amazing accomplishment given she is 4 years old ). She complained about abdominal pains over the last two days. Doctors changed her from Zantac to Prilosec which seems to help. Gleevec seems to cause nausea with her. She is very sensitive to smell of foods. Overall she is coping the treatment well so far.

Folks Esha is admitted into the hospital for phase 2 of the treatment. Here is a latest picture of how she looks

October 27th 2007 - Esha still continues to run a low grade fever. But on Saturday her fever spiked to 101.5. We were back to ER at the medical center. Blood was drawn and her counts look normal. Everything looks good. So the doctor recommended another 5 days of zithromax to avoid a potential viral to infection. She is starting to loose quite bits of hair. Dad gave her a hair cut to save her beautiful hair. We received a phone call on Monday October 29th informing us that her counts are good and she is ready to start phase 2 of her treatment.

October 31st 2007 - Esha started her phase 2 of the treatment today. During this phase she would be given heavy doses of chemotherapy over the next 5 days. Along with the chemo she is prescribed Gleevec which controls the BCR-ABL gene. This is one of the miracle drug targeted at gene therapy. The chemo started late in the evening and went all night. It went all night with Chemo injected every 3 hours.

November 1st 2007 - Over night Esha developed high sugars due to chemo and the iv fluids. Later today her iv fluids were changed to counter the sugars. We learned that the day 28 counts of Esha has no microscopic Leukemic cells, Flow Cytometry ( used to detect 1 Leukemic cell in 100K cells) turned negative which is good news. But cyto genetics detected BCR-ABL which indicates the traces of PH+ present in the body. So the fight continues with the heavy dose chemotherapy. The doctor suggested a potential bone marrow from a matched donor as next possible treatment in around 3 months. Latest research results from COG indicate unrelated donor match results have significantly improved. Here we go.. The search has started.. So folks, if you interested in helping patients like Esha, please consider donating marrow and registering with NMDP. www.marrow.org

2007-10-26T09:28:00.000-07:00

This is our daughter Esha. She is 4 years old and was recently diagonised with ALL leukemia with Ph+ on Sept 18th. We plan on using this blog to inform friends & family about her current medical condition.

Sept 18th 2007 - Esha has been running low grade fever of 99-100.5F over the last 5 days. As a precautionary measure we took her to the family doctor for a checkup. Doctor after the initial checkup thought it was viral fever and should subside over the next 2 days. But MOM insisted on a blood test as she looks pale and has been weak. After checking for any recent tests, the doctor prescribed a blood test. Since it was already pretty late in the evening around 6:30pm, we decided to pick-up Pizza @ pizza hut and went home. Around 7:45PM the doctor calls home informing that the blood count doesn't look good and he wants her rushed to the Westchester Medical Center @ Vallahala, NY. The doctor suspected it would be leukemia. We jumped in the van and by 9pm we were at the hospital. The resident doctors are waiting for her arrival. She is hooked onto an IV line and the Dad felt bad seeing a the 2nd poke of the day on her hand. In big scheme of things I guess this is a minor thing. Another round of blood was drawn and there are no leukemic cells in the blood but her counts doesn't look right. She was prescribed blood transfusion and we were in the ICU all night waiting for the day light to meet a hematologist.

Sept 19th 2007 - In the mean time Esha's uncle ( Dad's brother ) was informed of the situation and he flew overnight from SanJose to catch up with Esha's medical condition. At around 10 am the hematologist & Oncologist arrived in the ICU. Based on the blood count she felt it is Leukemia with 99% probability and recommended a bone marrow test. At around 11am her bone marrow was aspirated under sedation. Doctor confirmed that Esha's marrow has leukemic cells and has ALL (Acute Lymphoblastic Leukemia). We are informed that this is the most common form of childhood leukemia and has around 80-90% cure rate for disease free survival. At the sametime, the doctors sent her marrow for genetic analysis to further classify the ALL. It will be a weeks wait before any news on the genetic tests. Doctor explained the treatment plan. The first part would include a surgery to insert a port-a-cath through which the chemo would be administered. Knowing nothing about leukemia upto this point of time, there seem like a huge ocean of information coming our way. Given what has already happened we were atleast happy to know that this disease has high chance of cure rate. We were admitted into the hospital at this point.

Sept 20th 2007 - We as parents are trying to grip a handle on the situation but we are no way close to handle this magnitude of condition within our family. Both mom & dad has to inform work that they would be away for a couple of weeks. We had a slew of visits from nurses to social workers to help us ease the situation. Since the surgeons are already booked Esha couldn't be operated today. Finally the surgeon arrived late in the evening. He informed us that the surgery was scheduled for Friday at 11am. Went through the formalities, explained us the process, get signatures etc. Some how we passed the day in the hospital

Sept 21st 2007 - Esha seems very tired and she is sleeping late into the day. The nurses woke her up around 8:30am and got her ready for the surgery. She was taken into the operating room around 9am. It took the surgeon around 2 hours for the procedure. She came back to the recovery around 11:30pm. She had a couple of covered cuts (one on her neck & chest). The general anesthesia caused nausea for Esha. She had couple of vomits after which she seems to be back in her spirits. She was administered her first round of Chemo around 2pm. Her body had tough time adjusting to the Chemo. She developed fever and chills overnight which were controlled with little tylenol & lots of wet napkins in the hospitals. Luckily the next door neighbor in the unit warned us of these symptoms and we were ready.

Sept 25th 2007 - We spent the last few days in the hospital. Esha had high blood pressures and fevers. They were controlled with medication and she was added another medication to her growing list for regulation of blood pressure. Finally we are back to home and starting to adjust to the hypothetical germ free world we as parents want to create to avoid any infections. The whole house was given a thorough cleanup and it smells purell / bleach all over the house. We are required back in the hospital on Friday 28th for her next chemo

Sept 26th 2007 - Esha's uncle (Chitti babai ) left to San Jose to attend his work duties (after missing in action for a week ). Esha had trouble consuming 6 medications morning & evening. But after lot's of presuation she gulped them all.

Sept 28th 2007 - We went over the out patient surgery for a bone marrow aspiration & more chemo. But lightening struck twice in a row. The doctor came over and informed us that "Esha has a philadelphia chromosome .. which has a very poor prognosis". It seemed like the whole world came to a stop infront us. We couldn't believe our bad luck, given how rare this happens in kids with ALL. We some how managed to hide our emotions and put up a brave face for Esha in the recovery. Later in the afternoon we drove back home. You use google for a second opinion and it reiterates the prognosis. The doctor called us later that day confirming that her bone marrow represents around 5% leukemic cells. So we need to be back in the hospital the following Friday (Oct 5th) for another round of bone marrow aspiration & chemo therapy.
Learning the news Esha's uncle flew over from SanJose for a weekend stay with us to help the situation.

October 3rd 2007 - Esha had minor low grade fever by the evening. The doctor asked us to rush to the ER and we were admitted into the hospital. She was administered a dose of antibiotics and admitted into the hospital for cultures.

October 5th 2007 - Esha had her next round of Chemo and bone marrow aspiration. Since her cultures showed negative and her fever subsided we were discharged from the hospital. Blood was collected from the members of immediate family (dad, mom & brother ) for analysis of HLA match for bone marrow. We were very curious to know her bone marrow counts and the doctor indicated it seems to be around 2% visually and we have to wait for her test from the lab. By the time we came back home, we had a phone mail waiting telling us that Esha is in remission and her marrow showed < 0.15% of leukemic cells.

October 12th 2007 - Esha went to the day hospital for her next dose of chemo. Since she is in remission there is no need for any more bone marrow aspiration at this point. A shot of chemo was injected through her port and the whole process lasted less than 5 mins.

October 18th 2007 - Today is the day 28 which is the last day of induction. We went over the out patient surgery for a bone marrow aspiration and chemo. Since the appointment is scheduled at 11am, Esha had a hard time controlling her hunger. After the procedure we headed back home. We learnt that none of our bone marrow is a perfect match for Esha. Boom. Your head goes for a spin one more time.. Another eager wait to know what would be next step of her treatment plan.

October 21st 2007 - Esha was having a low grade fever over the last 2 days. So we landed in the ER for another round of blood work. All counts looks reasonable. Cultures drawn. We were sent back home.

October 22nd 2007 - Doctor calls in the morning requesting us to come over the next day to discuss the treatment plan. She prescribed an antibiotic as a safety measure. Later in the evening Esha started to complain about pain around the port-a-cath, low grade fever & swelling on the neck. Wow. We were worried of a potential infection to the cath. We were in the hospital next day.

October 23rd 2007 - Doctor checked her cath. She said everything looks fine and was a big relief for all of us. We were informed of her treatment plan for the consolidation phase. This would include heavy doses of Chemo. We would be admitted in the hospital the next day for this process based on her blood counts. Blood was drawn and we were sent home. We started to prepare for another week of hospital stay. Later that day the nurse calls and informs that Esha's counts are too low to start the next round of chemo. So we will be waiting for a week..