Nirali Passed away early morning April 27th 2007 due to complication after Cord Blood Transplant.
3rd February, 2010
Nirali's birthday - today would've been her fifth birthday. As much as I try to live in today, here and now, at times mind insists on making all kinds of what if scenarios. I can't help but wonder what she would look like, what her health be would like and so on. No matter how big the tragedy, the sun comes up the next day and things have to move on. We are also moving on at the best pace we can. Thank you for checking up on us today.
On 6th December, 2009 Nirali Memorial Radiation Center was inaugurated in Surat, India. Work on this project started a year and half ago and has achieved a significant milestone of procuring the radiation equipment and starting treatment. A radiation center is a much needed facility in Surat area for cancer treatment and we are hoping it will help out many patients who had to otherwise travel far for this treatment. More information on radiation center here.
While the basic treatment has already started, there are quite a few things yet to be done in the center. One of the most important things we would like to do is to help patients who are challenged financially. Cancer treatment is of course expensive and many patients struggle to get correct care. We want to be able to provide radiation treatment to them at a discount. If you are interested in donating for Nirali Memorial Radiation Center, please contact me at ruchnan@yahoo.com. Donations are tax-deductible in US and India.
Happy Birthday Nirali
3rd Feb, 2009 - She would have turned four! It was a tough day to get through. We miss her like crazy. We watched Madagascar - Escape 2 Africa. It was difficult for us to watch the movie without her. I am sure she would have loved it. Madagascar was playing on hospital TV when we took her to ER in Children's Memorial Hospital for the first time when her fever won't come down. Watching that reduced a lot of her anxiety and kept her distracted. She was a fan of Madagascar animals from that day on.
The reason for writing this entry is to say Thank you. Thank you for remembering us, calling us, dropping a note on website or through emails. The messages and calls had few words but a lot of love and support. We are blessed to have you as friends and family in our lives. Thank you.
One Year
Yesterday marked one year since the dreadful day of Nirali's passing. Sometimes it feels like it's been an eternity since I held my baby in my arms and at times it seems like the nightmare happened just a few days ago. These days - yesterday and the days leading to yesterday have been very difficult. We are blessed to have some of our family and friends with us during this time for strength and support. We know that all of our friends and family - even the ones who were not here with us - have kept Nirali and us in their thoughts this weekend.
Many of you have been sending kind and healing thoughts our way since this month began, through this website as well as emails. We are truly touched by everyone's heartfelt messages. I wish I knew how to convey how much they mean to us. I am always amazed that you remember her so fondly and know when we need more of your support. Thank you.
I will be participating in American Cancer Society's Relay for Life on 27th June in Nirali's memory. Please support the cause by either participating yourself or donating to the cause. Here's the link to Nirali's page where you can donate online and find more information about the event as well as American Cancer Society's efforts in fight against cancer. http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeIllinoisDivision?pg=personal&fr_id=7480&fr_id=7480&px=4197528
Birthday
It's Nirali's 3rd birthday on Sunday, Feb 3rd. This is so painful, it is beyond my capabilities to describe. It is impossible to express in words how deeply in our hearts we miss her. Every time we see a child her age do something she used to do, it triggers our pain to surface so easily.
I am so touched that so many of our friends,well-wishers have reached out to us to say they remember that her birthday is coming and they understand it must be difficult for us. We appreciate your kindness, your prayers and your suggestions to help us get through the day.
We celebrated Nirali's first birthday here in our house. She had a blast with a lot of family and friends present. Unlike some one year olds who get overwhelmed she had a lot of fun. As most of you know her second birthday was in Duke hospital. It was wonderful time - she had engrafted with donor cells just the day before. That day she met with both her grandmas and Nirav-mama after more than a month. She was very happy to see them. And that's it, our time is up! We will never have another celebration with her and that hurts beyond measures. I am sharing some photos from birthday celebrations. Reminds me of her ever joyous and upbeat personality, even in her hospital stays...
Rocking on her favorite birthday gift on first birthday wearing new outfit...
Her favorite book..Everyone read..
Nirav got her this I-Sing balloon which when tapped on, sang Happy Birthday - in Winnie the pooh voice of course. Nirali was so excited about it, for few days after that she insisted that everyone who came to her room had to listen to it!!
October 29, 2007 - Six Months
It has been six months since Nirali passed away and not a day goes by when we don't miss her. Saturday marked six months and it was also Jignesh's birthday. It was a brutal day to get through for us. Thanks to our friends who came and spent couple of hours with us and provided some distraction. This was a tough weekend. Navaratri festival was also in October. We missed her so very much, she loved to dance.
Thanks to all of you who told us that you donated blood or are planning to donate. I want to convey heartfelt and personal thanks. Since we went to India in May, we can't donate for another six months. Please consider donating blood regularly.
I met with Emily's parents - Tom and Robin Holum recently. Their little angle Emily passed away on August 2 due to post transplant complications. It was heart warming to see them. Only someone who has been through this knows how unbearable this pain is.
Thank you for keeping us in your thoughts and prayers. Your support has meant more to us than I can express.
September 23, 2007 - Childhood Cancer Month
Just wanted to drop a note to say Thank you! We are amazed that so many of you continue to come here on Nirali's website. Thank you for your heartwarming and caring messages. Your messages for Nirali and now for us have been a great source of strength and solace for us.
September is Childhood Cancer month. Please keep all these children in mind, those who are no longer with us as well as the ones who are fighting this disease right now. There are many ways we can help them. One of the ways is of course financial, and there are many organizations you can reach out to to provide your support. Another very important way is to donate blood. The blood banks around world are in short supply right now. Most adults can donate blood without any effect on body at all. Please consider donating your blood. One blood donation by an adult can be used for up to 3 adult blood transfusions. The same amount of blood can be enough for 6 to 7 transfusions for little children like Nirali. Cancer patients need blood products very often. Consider helping them. You can enter "donate blood in <city name>" in any search engine like Google and you will find plenty of options for locations and times where you can make an appointment to donate blood. Call your nearest blood donation agency and schedule an appointment.
We would love to hear from you that you have donated blood! Thank you for continued support and prayers.
August 6, 2007 - Thank You
Thank you all very much for helping me raise $5000 for the relay! Thank you for your generous contributions. Money you donated will be put to great use - for cancer research, early detection tests and treatment. We come across someone in life that we are touched by and they show a new way of helping others we didn't know about before. I hope Nirali made some such difference. There are so many people who need our help. So to all of you who donated money for this Relay for Life, who registered for bone marrow donation, who donated cord blood - thank you so very much and I hope you continue this good deed trend based on what your resources and time allow.
I walked for over five and half hours in Relay for Life event on Friday/Saturday, Jignesh also walked for over two hours (for those who know Jignesh, know that him walking for two hours is a bigger deal than me walking for five hours!). It was a moving experience - quite emotional for me but healing at some level also. It was wonderful to see some of our friends and family there who came out to support us. We walked in memory of Nirali and our young friends we have lost to cancer, from 5200 at Duke - Josh, Matthew and now Emily and Piyush and Subash who we came to know about through this website. Too many losses, just too many… Their families are in our prayers. We also walked in honor of Vinay and Aditya who continue to fight the battle against cancer. Check out Vinay's website if you haven't done so - www.helpvinay.org and help them raise awareness about importance of bone marrow registration in south Asian community.
Jignesh and I are doing ok. This is the pain that will never go away. Some days are worse than others. Sometimes it feels like it gets more difficult as time goes by. Last few weeks have been especially tough. We got admitted to ER with Nirali's fevers on July 17th last year. It seems like we never came back. A year went by and we are left with nothing. My mother leaving for India around the same time was also difficult for me - she was with us the entire year to help with Nirali's treatment at every step of the way. Jignesh and I are both keeping busy at work but the hole in our hearts will never go away (I don't want it to go away either), we will have to learn to live with it. We are trying to learn...with support of our family and friends who continue to be there for us.
Thank you once again for supporting us in so many ways for the entire last year and your continued prayers. We are truly grateful.
June 4, 2007 - Relay for Life by American Cancer Society
I had many plans to participate in Rainbow of Heroes walk on 5th May which is a Duke PBMT event and raise money for the wonderful team of PBMT family support. Of course none of the plans involved doing that without Nirali. Well, God had very different plans!
Last week, a friend of mine sent me an email about Relay of Life, an event by American Cancer Society. She is a cancer survivor and I bet she was hoping that I will donate some money. I thought the same too, I will donate money and may be send emails to some friends requesting them to donate as well. Then I saw that the event in Arlington Heights. I felt an urge join the relay and then again got discouraged that I probably can't. I don't feel up to many things these days, I may not be able to handle it. I remembered that Dr. Martin had told us the last time we saw him that be selfish for some time. Don't try to help others for a while, let others help you. He is very right, we need a lot of help these days and we are so blessed to have family and friends that have stood by us every step of the way and are still supporting us through this very difficult time. A lot of family and friends have been coming to visit us from everywhere and are still planning to visit us in coming weeks. There are people we never knew before and now through this website, it feels like we have known them for such a long time. We are blessed to have support of such wonderful people who care so deeply about us.
And because of this help, this assurance that if I can't handle it, some one will step in and help me, I decided to participate. I couldn't miss this opportunity specially when it is right here! So I joined the team and have set up a page in Nirali's memory. Please consider joining the team if you are in the area or at least consider donating money. Cancer has taken many lives and with more research and new medical break through, there is hope for better outcomes in future. We need cure for cancer and the research and treatment takes money. Please consider participating in this fight against cancer. Help in whatever way you can.
http://www.acsevents.org/relay/il/arlingtonheights/remembernirali
Thank You.
May 13, 2007
Nirali's ashes have been immersed in river Ganga (according to Hindu customs, the ashes are immersed in a river or an ocean - Ganga is considered the holiest river).
We are now trying to relearn to live by ourselves - just two of us. We plan to join work soon. My workplace has been tremendously supportive through out Nirali's illness. I could not have asked for more support from my office. We are grateful to all my supervisors, assocaites and team members at Motorola. Some of you may know this already that my visa is through employement and it was not possible for me to leave my job and still be in US so we decided that Jignesh is the one who didn't work all this time. His new job offer also came with flexible dates allowing him to be with Nirali and take care of her and join at a later date.
We are touched that you are still checking up on us and asking me to write something. I am really not sure what to write now. Thank you so very much for all the support you have showered upon us and your continued prayers for Nirali's soul and our strength.
April 30, 2007
Good News:
Circle of Life - Today my brother and sister-in-law are blessed with a beautiful daughter! We welcome her to the family with great happiness and pray for a healthy, happy life for her. Big sister Shailee is very excited about her little sister(still waiting for name) as expected. You all have stood by us throughout Nirali's long difficult treatment and now share our grief. We invite you to join us in welcoming our little niece today and share our joy.
We face extreme grief of losing a child and absolute joy of welcoming a little one in family. Life is a roller coaster and the ride goes on…
April 29, 2007
Nirali was cremated on Saturday morning(28th April) according to Hindu customs. We are trying to organize puja/prayers for Nirali in Chicago. Once we have details worked out we will post here. We are back in Chicago and struggling to get through every hour. While we are completely shattered, we know that she is in a beautiful place where there're no central IV lines, no dressing changes, no chemotherapy and those numerous medicines with devastating side effects. From the day she was diagnosed with ALL, we prayed to God to give her a life that she will love to live and be proud of. With everything that was going on with her, that may not have been possible and God decided that she had to be in his company rather than ours.
Also, I want to say that even though the transplant wasn't fruitful for Nirali, please don't underestimate the treatment. There are so many children and adults who get a new life with bone marrow or cord blood transplant. I hope you will carry her memory in heart as a good one and encourage others to register for bone marrow donation and also talk to expecting mothers you know about cord blood donation. Most of us throw away the cord blood and placenta which can give someone a life.
We are humbled by the support you have showered on us throughout her illness and even now. Believe me, it has provided strength when we were breaking apart. And it is heartwarming to see how sincerely you are now praying for her soul's peace. I also saw a note that you want to do something in honor of Nirali. Please keep us in loop. Also, here's a way to help other children who are/will be going through transplant. on 5th May, Rainbow of Heroes walk will take place in Durham, NC in honor of children going through bone marrow/cord blood transplant. Information about the walk http://www.cancer.duke.edu/pbmt/rainbows/. The Rainbow of Heroes Walk has become the annual fundraising event for the Child Life and Family support program of Duke PBMT. The mission of this volunteer-based program, , is dedicated to caring for, serving, and lightening the burden of the Duke Pediatric Blood and Marrow Transplant Community through a comprehensive array of services and resources. You can make online donation here http://cancer.duke.edu/pbmt/rainbows/donate/ OR you can make a donation at any time by sending a check made payable to Duke University. Please write 07RH in the memo and include Nirali's name in memory of her. and mail it to:
Jane Schroeder DUMC Box 3350 Durham, NC 27710
Thank you so much for your heartfelt notes and support.
Nirali Passed away early morning April 27th 2007 due to complication after Cord Blood Transplant.
April 26, 2007
Unfortunately we have lost half the ground we covered over the last few days. Machines are working OK.
April 25, 2007
There have been small improvements in terms of oscillator settings. The dialysis machine is working ok. Things are otherwise the same. Overall critical condition.
We truly appreciate your support and healing energy you send our way for Nirali's health.
April 22, 2007
Things have taken a big step backwards. Nirali is back on the oscillator since yesterday and needs lots of support to keep her oxygen level high. The dialysis machine is working for the most part.
Thank you for all the prayers and support.
April 21, 2007
Things are about the same with Nirali. Ventilator settings still need to be adjusted to keep her oxygen levels good. Dialysis machine decided to clot again this morning. We will try to hook it back up later today. She needs more sedation now. When someone is under sedation for longer, body gets used to the medicine. Looks like she got used her current sedation medicine and needs a little more.
Thank you for your never ending prayers and support. We can feel the love and support.
April 19, 2007
Last two days have been better overall for Nirali. Blood pressure has stabilized. She is tolerating ventilator ok. We have had to go back and forth on ventilator settings but overall still not bad. Fortunately dialysis machine started yesterday morning and is helping her kidneys and the medications have been started again. Subcutaneous air emphysema is improving also.
We continue to read books to her and sing some of her favorite nursery rhymes without getting her too excited. Both grandmas sing lots of prayers when they come to visit which is certainly very soothing for her.
Thank you for staying with us through this difficult journey and your unending prayers and support. It means a lot to us.
Hoping for small improvements as days go by...
April 17, 2007
Yesterday was quite fragile in terms of Nirali's vitals, especially blood pressure. With the dialysis circuit clotting four times and her blood pressure dropping, it was a very stressful day. We have not had success in hooking up the dialysis machine yet (it clotted first time at 5 AM yesterday) so her kidney numbers are on rise again and fluid retention is once again a concern. Her medicines are on hold or being adjusted to put less burden on kidneys. She also went from oscillator to ventilator and she is handling that transition well. The reason for change was that her lungs were starting to look very expanded and also the subcutaneous air emphysema. She is still sedated but the sedation has been reduced since she needs to breathe while being on ventilator and also to help with blood pressure. Sedation also contributes to low blood pressure. Although I am happy to see her a bit more responsive (to our words and touch), I really hope she is still comfortable and not in discomfort with all these invasive things going on.
Thank you for your continued prayers for Nirali's health and our strength. We feel your support, Thank you. Hoping for a better day today...
April 15, 2007
Yesterday was a bit rocky. Nirali started waking up and tried to breathe on her own. That is not good while on oscillator. More sedation was given and also the oscillator's pressure monitor needed to be changed to make sure that wasn't fluctuating, giving her incorrect pressure on lungs. To recover from all this, her oscillator settings had to go up and it has now resulted in subcutaneous air emphysema (air leaking from lungs). The pressure on oscillator has been reduced a bit to help with that and hopefully it will subside in next day or so. Other than that, things are the same.
Thank you all for your very encouraging words and prayers.
April 14, 2007 (+100)
Status quo. She is doing about the same. It is 100 days post transplant today. We have always kept the approach to take one day at a time but honestly this is not what we had in mind for 100 day mark. Anyway, we have some good news for 100 days. One of the 100 day tests is another chimerism test. We got the results for that and by God's grace it is DONOR chimerism(all donor cells in blood) again. The rest of the tests will be done later when she is off high dose steroids and off oscillator/dialysis.
April 13, 2007
Not much to report. Nirali is doing about the same. As I menioned yesterday she will continue to be on oscillator for few more days. The lung x-ray looked slightly better today. Kidney numbers are improving as the dialysis helps with that. Nothing is growing so far in the lab with all the samples that were sent. They will watch it for few more days - cultures take long to grow.
We are reading her the books she likes. Sometimes she wakes up more than they would like and her blood pressure starts rising so we have to back off and give more sedation medicine. So we work with her - what ever she feels comfortable with.
Here's are two photos -they were taken toward end of February when she was at home.
Thank you for your continued prayers and healing thoughts.
April 12, 2007
Yesterday's bronchoscopy indicated that there was some bleeding in Nirali's left lung (pulmonary hemorrhage). The treatment for pulmonary hemorrhage is positive pressure on lungs which means being on oscillator for at least 10 days and some extra steroids for the same amount of time. Sample from bronchoscopy has also been sent for more tests to check for infection which may have caused the hemorrhage. So the current plan is that she will continue to get breathing support and also dialysis for next few days. They will not try to wean the oscillator anymore now. Her medications have been started (ones on hold) or tweaked to keep her vitals stable and she continues to be sedated. Earlier she was also getting paralyzing agent but not as much now so it seems like even though she is sedated she can hear us so we are reading her favorite books to her.
CMV result was negative for last test but after that she has been off of medicine for couple of days so who knows if it will reactivate. We will have to see the results again on Monday. To reduce the CMV medication (which is really tough on kidneys), we need 3 to 4 weeks of CMV negative results.
April 11, 2007
Nirali's condition is still critical overall. There have been small improvements. Oscillator settings have come down further. They think it is now safe to do a bronchoscopy to see the reason for lung distress. If they are able to continue weaning off oscillator, she may go to ventilator today or tomorrow. Dialysis is helping her kidneys so it has been decided to give her some of the medications that were being held.
Thank you all for keeping us in your thoughts and prayers.
April 10, 2007
We have some good news and some bad. Overall Nirali remains in critical condition. The good news is that we have been able to work toward weaning off oscillator nicely. She was on very high settings and now she is moving in the right direction. Bad news - kidneys are taking a toll and they are having to hold off on antibiotics which is not good. They have decided to help her kidneys out with dialyses for couple of weeks. She will get a new line placed today, the ones she has right now are smaller than what is needed for dialyses.
Thank you for your encouraging words, healing thoughts and prayers. We have more of our family here. Jignesh's parents and sister's family are here. My mother is of course here- she has been helping us take care of Nirali since August last year. It is good to have family here at this stressful time. And all of you - our extended family are praying for Nirali all the time, we feel your support and love. Thank you very much.
April 9, 2007
Nirali's respiratory status got worse yesterday and she is now sedated and on breathing machine (oscillator). Next 48 hours will be very important to see how she responds to treatments she is getting to deal with lung distress.
Please continue to pray for us.
April 7, 2007
Nirali was doing about the same for last two days but her breathing started getting worse yesterday. By today morning her oxygen level was dropping enough to get very concerned so she is back in PICU. She has oxygen mask on(with 100% oxygen) and doing ok with that. Main concern is her lungs. The x-ray shows some inflammation which could be from infection like pneumonia. She has been started on antibiotics to treat infection. She is once again not allowed to eat/drink and asks for something to drink all the time. She asks us to read books or watch cars movie at times.
April 4, 2007
Nirali is feeling a little better today. There has been no fever. There's still some diarrhea but seems to be getting better. She is interested in books, puzzles and movies. She also enjoyed some coloring today.
When she was in PICU, she needed blood pressure medicine drip. She is being weaned off it slowly and seems to be handling it well. Current issue at hand is serious water retention. She is getting diuretics 4 times a day to get rid of the access water from her body. Hopefully we get control over it in couple of days. I am also concerned about loss of muscle tone so have requested physical therapy to help gain her strength back.
It was a very sad day in 5200 yesterday. A dear friend Ally passed away. Please keep her family in your prayers today. Her mother was always there to comfort us with her kind words and hugs. I hope she is surrounded by such wonderful people to give her strength and comfort in this difficult time.
April 3, 2007
Nirali's CMV is 169 this week. We weren't too surprised to see this since steroids were increased and her CMV medicine wasn't administered for three days last week. Hopefully now it will go down and stay negative from next week on.
She is running some fever and has diarrhea. And her vocal cord are quite swollen, she has been having hoarse voice for last couple of weeks. She may need to go up on antacid and even some different steroid (don't like this adding steroid part at all). Well, this antacid and steroid is ENT doctor's recommendation. Dr. Prasad who is in service right now will decide what to do with these recommendation.
Mom is feeling better and hoping to see Nirali tonight.
April 1, 2007
Nirali came back to her 5200 room yesterday afternoon from PICU. She was quite restless all day yesterday and most of today. Dr. Martin said she is suffering from withdrawal of sedative drugs. She was sedated for 4 days so it takes couple of days to get over that. She needs oxygen occasionally, specially when she is in deep sleep. This also may continue for couple of days according to doctor. Her kidney numbers have come down a bit so her CMV med has been started again. We hope for negative CMV again tomorrow.
It's mom's turn to be sick since yesterday afternoon. Same stuff - fever, diarrhea, body ache etc. I can't go see Nirali for couple of days now. So, now it's dad and aaji(grandma) on hospital duty.
March 30, 2007
Nirali was taken off the ventilator around 4:30 PM today. She is doing well without it. It was funny - the first words out of her mouth when she came out of sedation were TV and Red Car - she wanted to watch Cars movie! . She is still sleeping most of the time. Every now and then she is asking for water and milk which she is not yet allowed to have. She is still on little oxygen. If things go as per plan and we can remove oxygen mask by morning, we may get transferred back to 5200.
When I was reading some of your messages, I realized that I forgot to mention CMV counts of last week. CMV was negative in last Monday's test but ( seems like there's always a but!) for last two days her CMV medicine had to be held off due to elevated kidney numbers. CMV med affects the kidneys so they are holding off on CMV med until kidney test shows a little better result. Meanwhile, please pray that she keeps fighting CMV and we get another negative result on coming Monday.
March 29, 2007
Not much change to report. Nirali is still sedated and on ventilator. She is being weaned off of ventilator slowly. Seems like we will be in PICU for few days. I am feeling very frustrated about the delay that happened. At least a temporary drain should have been done on Monday. I truly believe her lungs would have been in much better shape if the same things were done on Monday instead of waiting till Tuesday and getting her this worked up. There were clear signs of her breathing getting more and more difficult. Her lungs were extremely overworked due to labored breathing and so it is taking longer to come off of ventilator. Hope it all ends well and she recovers well.
Thank you all for your healing thoughts and prayers. Keep them flowing our way...
March 27, 2007
Where should I begin? It has been scary 24 hours. Nirali's breathing kept getting worse from Saturday onward. Doctors kept saying she is stable and from day to day the fluid is not increasing that much. Mom and dad both felt that fluid accumulation slow down wasn't matching with Nirali's condition. Sunday night was rough. She needed oxygen and she refused to wear oxygen mask. She didn't sleep all night. During day, she needed oxygen even when she was awake. We were hoping they will decide to either do the surgery on Monday or at least do another temporary drain to get fluid out. Instead it was decided that the surgery (pericardial window) will take place on Tuesday. I was worried about Monday night, really worried. And my fear wasn't baseless. She kept getting worse through night. Finally the cardiologist had to be called in and she was moved to PICU and they drained fluid with temporary catheter at 5:30 AM. Her breathing didn't really improve as expected so in the afternoon, she got the pericardial window surgery done. The surgery went well. She is still sedated, they want to keep her that way for sometime. She still has the breathing tube down her throat and needs 100% oxygen. It seems like she will be in PICU for couple of days. I hope she improves quickly and completely.
Please pray for her quick recovery. We will try to update here as much as we can.
March 23, 2007
Nirali's ECG from yesterday showed that the accumulation may have slowed down a bit. Doctor said it is still not conclusive but at least the fluid hasn't reached a dangerous level. A more definitive observation will be from Monday's ECG. I am a bit uncomfortable that they decided skip ECG on Saturday and Sunday. I guess since she is being monitored here, if there's a need for it, it can be done anytime during weekend. So, please keep praying for her. The prayers of Nirali's huge extended family will be heard for sure.
Nirali is feeling bloated and cranky since she started getting steroids on Wednesday night. Unfortunately I have no walking or stickers to report. She has been watching 'Cars' and 'Finding Nemo' frequently. She also enjoyed some coloring yesterday in Nemo and Cars coloring books!
Dad is recovering slowly. Yesterday wasn't too bad for him. We are hoping that he spends today totally symptom-free so he can come to see Nirali tomorrow.
Thank you for your continued prayers, healing energy that you send our way and your golden heart to join our family in these trying times.
Macrh 21, 2007
Nirali's ECG shows that she is still accumulating fluid around heart. The doctors decided that they will give her a five day course of steroids to see if the accumulation slows down. It was a decision to be made carefully since steroids make fighting CMV harder. If the steroids show promise and the fluid accumulation slows down, it would mean that we can avoid the pericardial window surgery. We pray that it works and of course doesn't make CMV worse. According to doctors, the surgery is not that big a deal but it is still scary for us so if it can be avoided safely, of course that is what we would like. While she gets the steroid dose for five days, she will get ECG everyday to keep a check on fluid accumulation.
Nirali has been feeling better after the catheter was removed. Her heart rate has come down to near normal range. She also walked few steps today and put one lonely sticker on the door again! Some of you expressed that you would like to send stickers for 5200 kids and asked if any particular kind will be better. Thank you so much. The kids usually like themed stickers like Winnie the Pooh, Thomas the train and Spongebob . Animals and butterfly stickers are also very popular here. If you like to send any, please see 'How to help' section(http://savenirali.com/nirali/Main/BecomeDonor) for Jane's mailing address.
Today dad wasn't feeling well in the morning and by now he has mild fever, diarrhea and body ache. So, he has to stay away from Nirali for at least 3-4 days. It's mom and aaji(grandma) on duty at the hospital.
March 19, 2007
Nirali's temporary catheter for draining fluid around heart came out today. It presents an infection risk so they don't it be in for too long. Now the plan is to do ECG tomorrow and day after tomorrow to check for fluid. We pray that fluid build up slows down. After removing the catheter Nirali perked up a bit, she was sitting on bed and coloring. It seems like catheter was bothering her. Still doesn't want to walk at all.
CMV count was 119 today. We were hoping it would be negative but..If the fluid build up is a result of GVH then steroid can help reduce it. Although increasing steroid can make fighting CMV harder. Since CMV count is not zero yet, no changes in steroid.
Thanks for all your prayers and healing thoughts. We truly appreciate your support.
March 19, 2007
Nirali is about the same. The fluid around the heart had to be drained again on Friday and Saturday- certainly not a good thing. Her blood pressure and heart rate continue to be high and she needs IV Blood pressure medicine. She seems to be in some sort of pain but we are not able to pinpoint where and why. It could be the catheter that is there for draining fluid or something else. She is also quite nauseated and has stopped eating again.
Today once the doctor comes and the test results for CMV come, the next course of action will be decided.
March 15, 2007 - Day +70
Nirali got a lot of fluid in PICU so she needed oxygen all day yesterday and at night. Today she didn't need oxygen when she was awake but needed some when she was in deep sleep. Yesterday's ECG showed some fluid which may have remained from yesterday so it was drained from catheter again. Today's ECG showed that there was not much fluid so they decided not to drain today and check again tomorrow. We sincerely hope that it only gets better from here.
Nirali is recovering slowly. She was in bed all day yesterday and very irritated about wearing the oxygen mask. Today she got down from bed and yes, put some stickers on the door! This time we got smart and have stuck craft papers on doors (don't want to spend three hours cleaning the doors like last time). She is not wanting to stand up for long, just few steps and she gets tired but that's fine. We will work it slowly.
There were couple of questions about the reason for fluid accumulation and CMV contraction. It is hard to pinpoint reason for fluid accumulation according to Dr. Martin. It could be the chemotherapy she got earlier. This type of fluid build up has been seen more in young children and it is not that uncommon.
CMV - she could have gotten this virus from clinic or even any of the blood products(platelets, red blood cells) she gets regularly. Approximately 80% of US population carries this virus. We all may have it(people with normal immune system) and not know about it as it doesn't really affect us that much. Since such a large percentage of people have it, they don't screen the blood donors for CMV - I can understand that it would be pretty tough to get that many donors to keep up with amount of blood products these patients need.
March 14, 2007
Yesterday was meant to be a routine clinic day to start the new CMV medicine but it turned out to be a very long and scary day. Nirali's chest x-ray showed enlargement in heart. So she was sent for ECG which showed significant fluid accumulation around her heart and it needed to be drained. They decided to drain it yesterday itself so the procedure was done at PICU. The procedure involves draining the fluid using a needle that is guided by ultrasound. It went well, she has a small catheter still left in place in case more fluid needs to be drained. After the procedure we got admitted to 5200. It seems like we will be here for few days based on Nirali's recovery and any further fluid build up. We pray that she doesn't get any more fluid build up which may require further treatment.
March 12, 2007
CMV copies went up again - 550. It's a roller coaster ride. Dr. Martin decided to change the medication- from Ganciclovir to Foscarnet. We pray that this medication works.
Today's test showed that she was dehydrated so she got lot of IV fluid at clinic. She has a stomach x-ray scheduled for tomorrow to see if the nausea is caused by some problem in stomach. Meanwhile, one dose of an oral medicine has been stopped as it can also cause stomach upset and the anti-nausea medicine has been changed also. We really hope it works. She has been really unhappy for whole of last week. Her hemoglobin was is low so she got blood on Saturday which perked her up a bit. She needed blood after 12 days and platelets after 7 days - signs of marrow producing some of red blood cells and possibly platelets too.
We received quite a few emails from Jane from Duke family support program. Thank you all who donated money/gift cards/toys. And thank you all for continued support and prayers.
March 09, 2007
Nirali's CMV copies went down a bit - 351 as of yesterday's test result. They went ahead and started cytogam yesterday. Cytogam is antibodies derived from pooled adult human plasma selected for high titers of antibody for CMV. That will help Nirali fight the virus faster. For cytogam infusion, we have to go to clinic three times a week which is our normal schedule anyway.
The gall bladder ultrasound showed that there is sludge collected which can be the reahat she son for her nausea. Prolonged use of TPN(IV nutrition) can cause the sludge and apparently it is pretty common. When the child starts eating a little, the sludge gets disturbed and that causes nausea. Nirali has started an oral medicine to help with that. We hope this medicine helps her. She has been feeling very nauseated and sluggish. She gets tried very quickly and is uncomfortable most of the time.
One more thing was observed in ultra sound. Her kidneys have enlarged a little. Reading that report worried me but after asking Dr. Martin ( he is great, I send him an email with question and he replies very quickly.) we understood that many patients have enlarged kidneys post transplant and enlargement goes away in first year post transplant. So, as long as her kidney lab results look good, this enlargement is not of any significance.
And I want to finish this on a light note - we see some eye lashes and eye brows growing! Also some very fine hair on head too! Don't get me wrong, I love her beautiful bald little head and in fact I used to get a bit irritated when someone asked me when her hair will come back. I felt like they were undermining the treatment - we are still worried about her core organs all the time, they can get affected by these strong medicines, GVHD. So, I never worried about hair. And I never asked doctor when her hair will come back, always felt that if everything else goes well, hair is just superficial - it will come whenever. That said, I am very excited to see the tiny little hair on her gorgeous bald head! I think it will make her feel good about herself. She knows that mom and dad have hair and she doesn't. When we realized that she knows this, it broke our hearts. I(mom) wanted to shave my head but then realized that Nirali will probably not recognize me that way so backed away from the idea. Now, one of the medicine that she is on, is going to make her hairy - yes, the chemo has hair loss as side effect and another med she is on now has hairiness as a side effect so she will be quite hairy for sometime, well, until they stop that medicine which I think is after 5 or 6 months. No hair, too much hair - it's all good!
March 07, 2007
Dr. Martin said the increase in CMV copied is not big so no changes in treatment as yet. Next test will be on Thursday to see if the copies are still going up. We hope they are going down.
Nirali continues to be nauseated. Yesterday was slightly better but we still have to limit her water intake. Eating has completely stopped. She is feeling sluggish and physical activity has reduced a lot. Her stool was collected for culture to see if there's anything going on in stomach. We will find out in couple of days if anything comes up there. Today she has an ultrasound for gall bladder to see if nausea is related to that. Doctor said with all these medicines sometimes gall bladder gets irritated and we should check if that's the case. Hope nothing comes out of that.
Thank you all for your prayers and healing thoughts. We need them, keep them coming our way..Thanks...
March 5, 2007
A setback - CMV copies went up to 434 in today's blood test. They may add another drug from Thursday. Just when we thought it will be ok soon..
Nirali was not feeling so good today - she felt quite nauseated and tired all day. She hasn't thrown up during day but that's because she hasn't been eating or drinking much. She still keeps asking for water but we are limiting her water intake as she tends to drink too much at once. At least she has kept her oral meds down.
We pray that she fights off this virus fast.
March 4, 2007
Nirali had a rough night last night. She was very nauseated and couldn't keep anything in her stomach. She vomited all oral medicines from last night. We tried twice but both times the same thing. To add to that she was feeling very thirsty and kept begging for water. Even though we tried not to give much, she couldn't hold that either. She kept throwing up water as well. I was worried it may be one of these many viruses going around here. So, we met with Dr. Martin today and he said the medicine she is getting for CMV can cause upset stomach. He suggested to start an anti-nausea medicine(zofran) twice a day. We got the IV zofran in clinic and that seems to work so far. I hope she takes the oral one and it helps. Poor thing was up almost all night.
Today we got Nirali's Friday's CMV test results and CMV copies have reduced to 353. That's good, seems like medicine's working, let's hope it keeps working and we get a CMV negative result soon.
She didn't need platelets today. We were surprised by that since her platelet count was 36 yesterday and we were expecting it to be in single digits today. Instead it was 33! We'll take that.
March 1, 2007
CMV test done on Tuesday before starting the treatment showed 830 copies. The test was done just to make sure that the first positive was not a false alarm. So, it was good that they didn't wait to start treatment. Next test will be done tomorrow to see if copies are starting to go down. Sometimes the copies increase initially despite starting the treatment. We pray that the treatment works quickly.
Thank you for your prayers and encouraging messages.
February 27, 2007 (Day +55)
Today we got some bad news. Nirali's blood tested positive for CMV (Cytomegalovirus). 275 copies were found. She has been started on IV Ganciclovir in day hospital today. Unfortunately this medicine has the side effect of suppressing bone marrow so now her WBC will fall rapidly and she will need more GCSF. She will also need more platelets and red blood cell transfusions. They sent blood for test to check one more time for CMV and they will also check once again on Friday to see if the copies are increasing or reducing in her blood. Meanwhile, she will continue on Ganciclovir via IV twice a day.
This is worrisome for us. If CMV copies increase to 10K to 20K, it can affect her lungs. Please pray for her that the medicine works and CMV doesn't spread more.
February 24, 2007 (Day +52)
We went to clinic everyday of this week and three days we were sent back home right away as she was doing well and didn't need anything. For the first time after transplant Nirali went without platelet transfusion for two days. She got platelets on Friday and they expect she will need them again on Sunday so we got today off.
She also went without red blood cells for seven days. She was needing that every five days or so earlier.
Every Monday, we meet with Dr. Martin. When we meet him this Monday, he will tell us if we can go to three days/week clinic from next week.
Last week while changing her central line dressing, we noticed it had been pulled a little bit and the stitches were out so a chest x-ray was done to ensure placement of line. The x-ray showed both the lines are in right place.
There is an outbreak of Noro virus here and a lot of people are getting sick. We are being extra careful with Nirali as she can get any infection easily. Her blood gets tested for some common and serious infections every week. So far, she has not shown any positives. We thank God for that and pray everyday that she doesn't get any infections.
There was one more question posted after getting the donor chimerism report - Does this mean she is cured now? This is a difficult question to answer but I am going to try.
Cord blood/Bone marrow transplant is a long and serious treatment. Doctors watch these patients very closely for first 100 days for complications. Complications can be infections, Graft-Vs-Host disease (where donor cells attack the host body) and/or side effects of the chemo (or radiation) that the patient got for transplant. Even after 100 days, they have to be monitored closely. For the first year, patients are monitored and any complications need to be treated very quickly. Apart from these complications - there are two more things possible - a secondary cancer that can occur due to transplant, the chances are low , about 4-5%, but unfortunately it is a possible side effect. The other possibility is relapse of the original cancer. If original bone marrow gets completely wiped out (and the doctors aim for that of course) and donor cells are prominent (donor chimerism) then the possibility is smaller for relapse. So, it is still a long road to recovery but Nirali is on right track. We feel like God is watching over us and he is listening to everyone's prayers.
After transplant, these kids' immune system is very immature. As you can imagine - with cord blood, it is an immune system of a new born. After transplant, the immune system is even more delicate than a new born's. For Nirali, all her immunizations that she got before are no longer valid now because she doesn't have that bone marrow any more (Once again, we thank God for that). She has to be very careful for at least next year, she can't go to public places where there many people, can't go to park and play with other kids. Because of this immature immune system, she would catch any infection very easily. So, we will continue to be very careful for next twelve months or more.
Hope this helps. It is a bit long answer but there's quite a bit of information.
We continue to pray that Nirali gets through transplant healthy, happy and without any long term side effects.
February 19, 2007 (Day +47)
WBC 19.6, ANC 15680
Nirali is adjusting well at home. We are also trying to adjust to the IV medication and everyday clinic routine.
Her GCSF medicine (given to increase WBC production) has been changed from everyday to only when WBC falls below 5 since her WBC is quite high now. Today's blood counts showed that there is also some activity in red blood cell production. It is a slow process but it has started so she may not need red cells that often now.
Today Dr. Martin said that if she continues to do well, we may be able to get away with three days a week clinic visits from next week!
Here are the pictures I had mentioned before in updates..
Below: the stickers on the doors of her hospital room that took us three hours to clean!! There must have been well over 1500 stickers on these two doors!
Group photo with nurses at 5200 on valentine day. These are some best in class nurses..simply great!
Conffetti parade on 15th...
February 16, 2007 (Day +43)
Thank you all for such wonderfully supporting messages.
Nirali had her conffetti parade when leaving 5200! We took pictures and will try to post them here soon. I was worried that she may get overwhelmed and cry but she did very well. She was very well taken care of and even loved at 5200 and it felt sad that we won't get to see the wonderful nurses everyday. Leslie - Nirali's primary nurse was really sad that she was leaving but ofcourse happy for her that she is doing well.
Nirali came home yesterday afternoon. Based on previsous two visits, we were ready for her to ask to go back to 5200 (Duke perdiatric bone marrow unit, we even joked with nurses there that please hold the room for her for a day or two in case she refuses to sleep at home!) in couple of hours but to our surprize, she was very happy here. She slept very well with papa in afternoon and was in great mood even after waking up.
Yesterday was exciting and hectic. The home infusion company's nurse came home late afternoon to explain us about the IV medicines we have to administer now at home. Even at home, Nirali will be hooked up to IV meds from around 7 PM to 9 AM. Once the meds get over in morning around 9 AM, we will go to clinic everyday. It is going to take us a week or so to get the routine down.
February 14, 2007 (Day +41)
Happy Valentine's day...
Nirali is getting discharged tomorrow. We are very excited and also a bit nervous. She came home for couple of hours today and yesterday. She was very excited initially but then wanted go back to 5200! Everyone said this is pretty common, and surprisingly it is the same for older kids also - they feel safe in hospital. So we will see how it goes tomorrow when she is home for almost all day. We will make sure to keep her entertained and busy. Even after getting discharged, we have to go to clinic everyday.
The doors in the room were quite decorated (!) with all the stickers. I felt guilt leaving the doors like that. It would be quite a task to clean them so today we spent around 3 hours cleaning them. I took couple of pictures of all those stickers before starting the cleaning, I will post them here in couple of days for grins - something to show for Nirali's physical activity in her room!
I want to answer a question that was posted earlier. It was about DNA of blood and rest of the body. A DNA test of Nirali's blood will show donor's DNA(Thank God for that). The rest of the body will retain her own DNA. So if skin or hair were to be DNA tested, it would show her own DNA. Isn't that amazing???
February 12, 2007 (Day +39)
WBC 9.9, ANC 5340
Nirali continues to do well. We have made progress in oral medication and plan to add one more tomorrow. Eating is a little better too, she seems to prefer apple sause these days. She also tried noodles.
She has an oral med for pressure and a patch apart from the IV blood pressure medicine. Her patch dose was increased yesterday and today they discontinued the IV medicine. We hope her blood pressure stays under control without IV med.
Nirali will get a four hour pass tomorrow to go home. We are looking forward to that.
We have updated the 'How to help' section. Duke Pediatric Bone Marrow Transplant child life and family support need some things for children here. If anyone wishes to help, please check the updated section here http://savenirali.com/nirali/Main/BecomeDonor
Update @ 6 PM EST - Donor Chimerism it is!
We just got the result of the DNA test and her blood sample has more than 98% of donor cells. God is watching over us. Thank you all for your prayers.
February 9, 2007 (Day +36)
WBC 8.5
We didn't get the chimerism test results today. We are told it will come sometime next week.
Nirali got a one hour pass today as well. She had fun watching fishes and in general being out of the ward. We are still trying to wean her off of IV blood pressure medications. If we are successful, we may get discharged toward the end of next week.
She has some bone pain and low grade fevers which is pretty common when the WBC is going up rapidly due to GCSF (medicine to increase WBC production). She is in good mood mostly and these days she is enjoying coloring quite a bit, of course the stickers are still favorite. Favored movies are 'Finding Nemo' and 'Lady and the Tramp'. Thankfully she is watching little less TV now that she is enjoying going out and other activities.
February 8, 2007 (Day +35)
WBC 5.2
Nirali has permission to go out of the 5200 unit for an hour today!! We will just go to the clinic next door to see big fish tank that she likes very much. Before any patient gets discharged, they get limited time passes to go out of the unit and come back. So this is a start! Sometimes kids get used to the unit and refuse to go out, we'll see what Nirali does today..
She has diaherrea which can be due to stopping morphine. We decided that we can't add any more oral medicine at this time since she is still refusing to take them and cries a lot and also throws up sometimes.
Mom's central line came out yesterday since Nirali doesn't need granulocytes anymore. She is making her own cells now...
February 6, 2007 (Day +33)
WBC 4.2
Once patient has officially engrafted, the ANC count is done only once a week so I will post that next Monday. Nirali's pain medication was discontinued today completely, hope she handles it fine. I am hoping her itching gets better also, morphine makes her itching worse. We added one more med as oral yesterday and she threw up last night and this morning. So between the nurses and us, we are trying to come up with ideas to get her to take oral medicines. After couple of day, she once again took a few bites of food today. Hopefully the trend will continue.
5200 lost a child today. It is very painful. It is very difficult to not get attached to these kids. It is a big family here and parents are a support system for one another. May God give the family the strength to understand and respect his decision.
February 4, 2007 (Day +31)
WBC 3.4, ANC 1900
Thanks very much for your wishes on Nirali's birthday and continued prayers and support. We may have turned the corner in walking in hallway! She got out of her room yesterday evening and again this morning to go for a walk. It is good for her to continue this type of physical activity to gain some strength back.
The chimerism test will be sent tomorrow morning. The doctor said we will get the result by Friday.
We continue to struggle with oral medication. Most of her medication has to be converted to oral before she can be discharged so that is the challenge in front of us now. We are working on it..
February 3, 2007 (Day +30)
WBC 2.1, ANC 1155
Today Nirali turned two! We celebrated her second birthday here at hospital. Apart from mimi (that's what she calls mom) and pappa, both grandmas (aaji and dadi) were here and Nirav-mama (uncle) who came from Chicago was here too. Nirali was very happy to see everyone. She had fun with balloons and all the stickers she got for her birthday. Most of all she enjoyed being with aaji,dadi and Nirav-mama.
Along with other presents (pooh stuff ofcourse!) 5200 staff gave her a huge card signed by nurses and everyone else here. Her primary nurse Leslie also got her some presents which she loved.
Today with everyone here, we were able to motivate her to get out of her room and take a walk which was wonderful. Hopefully she will keep it up and go out of the room for walks now on.
Thank you all for birthday wishes for Nirali and prayers. We will be sure to read all of them to her. Here're couple of pictures we took today.
>> Putting stickers in hallway...
February 2, 2007 (Day +29)
WBC 2.0, ANC 920
YES!!! We have third day of ANC over 500! Grow Cells Grow..Thank you all so much for your prayers and your support.
The doctor hasn't come on rounds yet but Leslie (Nirali's primary nurse) told us that chimerism test is scheduled for Monday morning. That is one of the big milestones to call the transplant a success. Please pray for donor chimerism.
February 1 , 2007 (Day +28)
WBC 1.5 ANC 795
Nirali is doing ok. Her pain med has been decreased once again a bit. Blood pressure is slowly getting better.
She keeps this up and we may have our third day of ANC above 500 tomorrow!
After she engrafts they will do a DNA test to check how much of her cells are the donor cells. It is called CHIMERISM - The state in which donor cells have durably engrafted in the recipient. Donor chimerism implies that bone marrow and blood cells are of donor origin, while mixed or partial chimerism means that recipient cells are also present. Of course we want Donor chimerism!
January 31, 2007 (Day +27)
WBC 1.2, ANC 780
We pray to God that she is on her way to engraftment! Her pain medication has been redcued a bit again so we will see how she handles that today. She is cooperating a little with oral medication now which is very important. It is helping with blood pressure. She has also started eating a little bit - almost negligible but it's a start. She wants to eat bread/roti and ketch up. Doctor told us that a lot of kids eat ketch up, mustard etc. Their taste buds are sort of numb so they like strong tasting things..
We need 3 consecutive days of ANC more than 500 for engraftment. GROW CELLS GROW...
January 30, 2007 (Day +26)
WBC 0.9, ANC 450
These are Nirali's today's counts. Doctor said she is engrafting. We have to wait and watch. She is feeling a little irritated, that could be from bone pain. Blood pressure is still a bit high and we are trying to get her to take oral medicine for pressure. Her eyes keep watering a lot but doctors don't seem too concerned about it at this point.
Since there are signs that her cells are grwoing, she will not be getting granulocytes from mom for next few days.
GROW CELLS GROW...
January 26, 2007 (Day +22)
Nirali’s skin is looking a little better. Itching is still about the same but her activity level is going up slowly. We were able to go down a bit on her pain medication which is good. Unfortunately blood pressure is still staying high. An oral medicine has been added to help with this but getting her to take any meds by mouth is a huge struggle these days. So we will see how it goes.
Mom’s hemoglobin has fallen below 9 now so she can’t donate granulocytes on Monday. The good news is that the doctors want to check Nirali’s cell activity anyway so they want her to go without granulocytes for few days. She will get the last dose of mom’s granulocytes tomorrow (Saturday). By Tuesday we will find her WBC count. We are hoping we find a good count and look forward to engraftment! Please pray for her engraftment…
Meanwhile mom’s working on getting hemoglobin level up (eating all kinds of iron rich food) in case Nirali needs granulocytes again.
What is engraftment?
Engraftment is when the donated cells one received for transplant start to grow and make new blood cells. A blood test counts the number of neutrophils in bloodstream. An absolute neutrophil count (ANC) of 500 or more for 3 days in a row is a sign of engraftment. For ANC to be around 500, WBC has to be over 0.5 (usually around 0.7).
January 23, 2007 (Day +19)
Nirali’s itching is a little better. Anti-itch medicine dose was increased and it seems like we have hit the correct frequency/schedule and dose to get itching under control. She still gets uncomfortable for couple of hours a day but it certainly is better than before.
She continues to be on blood pressure medication – the dose has been increased one more time as pressure is not coming down that easily. Of course all other GVHD meds and antibiotics continue as well. She is also getting some steroids. She has needed platelets infusion many times these days. Almost every day – in fact day before yesterday she got platelets twice on the same day.
Her physical activity has improved a bit. She has started walking a little bit again. She still doesn’t wants to go out of her room but she is happy to walk around in the room and put stickers on doors!
Mom was able to give granulocytes on Monday, Thank God. She will also go for aphaeresis on Thursday. If hemoglobin seems low again on Thursday, mom will have to go for a blood check on Sunday to see if she can donate granulocytes next Monday or not.
Thank you all very much for your very supportive,encouraging messages and prayers.
January 20, 2007 (Day +16)
Her skin rash issue continues. She gets absolutely misearable between the anti-itch medicine doses. Last two days were tough for her. Today she felt slightly better in the morning. Watched Jungle Book 2 and Springtime with Roo. She also wanted to read one of the Pooh books. Her blood pressure continues to be high. She is on couple of meds for keeping blood pressure under control. We pray that her skin rash gets better soon, it is very painful to see her this way.
Mom found out yesterday that her hemoglobin is reducing so she has to go for a test tomorrow to check hemoglobin level. Only if it is above certain point, the doctors will let her donate granulocytes to Nirali :(. Otherwise we will have to keep checking the level and when it gets back up, she can donate granulocytes. We hope the level is ok tomorrow so mom can donate granulocytes on Monday. They provide some protection against infections so it will be very disappointing if mom can't donate on Monday.
January 18, 2007 (Day +14)
Nirali continues to suffer a lot with skin problems. Rash is very bad and it is very very discomforting for her. According to doctor it could be partly due to chemotherapy she got earlier and partly GVHD (Graft Vs. Host disease). Couple of changes have been made in medication which will hopefully help.
Her pain med dose had to be increased which could add to itching again! It's catch-22... Dr. Martin told us in one of the consultation sessions - if you can imagine walking on a tight rope - imagine walking on about twelve of those tight ropes - that's what the transplant doctors have to do!
The doctors and nurses here are wonderful. We have met all six attending doctors here at Duke PBMT by now and they are all great.
Nirali was very confortable with nurses on 4 West(Oncology ward) at Children's memorial hospital in Chicago. I thought she will take some time to get used to new faces here but she has adapted quickly. The credit goes to the nurses at 5200..
January 17, 2007 (Day +13)
Now her fever is under control but the skin rash is getting worse and worse. She is so itchy all over and skin is breaking down/peeling off. Poor thing - she is so itchy and scratches so hard, we have had to cover up her hands with mittens and tape it up so her skin won't bleed. She has very hard time falling asleep because this discomfort.
Since she is getting mom's white blood cells it's kind of hard to see the cell movement of her own but we may have something going! She didn't get any cells from mom for two days - Sunday and Monday. And the expectation is that her WBC will go down to zero but it didn't. It went to 0.3 and stayed there for one whole day. That could be her own cell count! We very much hope it is.... GROW CELLS GROW!
January 14, 2007 (Day +10)
Nirali's fever broke once yesterday after steroids but again at night she had very high fever. Over 105. She will be on a six day steroid course now to keep fevers under control. She has more skin rash that confirms the donor cells are waking up and realizing this is not the body they were in before. Doctors are usually happy to see this. The rash and itching makes her miserable of course but she is getting some anti-itch medicine and steroids may help with that too. With the high dose steroid, she will be quite irritable for next few days but that's ok as long as her fever gets better.
January 13, 2007 (Day +9)
She has very high fever since last night and it's not breaking at all. She also has a bit of skin rash. Could this be engraftment fever?????????? We pray that it is. She is on all kinds of antibiotics and now will probably get steroids to break the fevers. Hopefully it will bring fever down.
GROW CELLS GROW..
January 12, 2007 (Day +8)
Poor thing continues to suffer. Apart from serious nausea, throwing up, diarrhea, high blood pressure and mouth sores she also has a pretty bad diaper rash and fissure which makes her very uncomfortable at times. Her skin is much darker now, voice is getting coarse and has difficulty speaking sometimes, lips are cracked and bleed sometimes - apparently most of it is expected! The doctors think she is on track and doing ok. Also, they keep reminding us that it is going to get worse before it gets better. I don't know how much worse...She has persistent fevers also and refuses to take tylenol by mouth so temperature doesn't go down much. Pain from her fissure on bottom is keeping her up at night. The pain medication has been changed today. Let's see if that makes it better.
The usual cut off limit for giving platelets is 20 but Nirali spits up blood with platelet count over 30 so her cut off has been increased to 40 to reduce blood loss in vomits. She gets mom's white blood cells also six days a week and according to doctor that is helping with mucositis and fissure also. We were concerned about her breathing heavily so her chest x-ray was done yesterday. It showed no irregularities. We pray to god that she gets no other complications.
January 9, 2007 (Day +5)
Nirali is getting worse as expected. She feels very nauseated and with mucous spits some blood also. Her pain medication dose had to be increased few times to get her comfortable. She also has fevers so she is on antibiotics. Once in a while she also needs blood pressure medicine to avoid very high blood pressure.
Currently her main activity is watching TV. She watches her favorite movies - these days they are Pooh's Heffalump movie, Jungle Book 2 and Lady and the Tramp (because it has dogs in the movie!). Sometimes we have to watch the same movie two-three times in a day! We try to avoid too much TV for her but it's pretty tough when she is feeling so down. Even after all this she wants to read books or do puzzles with mom or dad for couple of hours which is good. She has been walking for few minutes a day so staying a bit active so far.
A patient went home today from PBMT (Pediatric Bone Marrow Transplant) unit. It's an event to celebrate - the nurses and other staff shower the patient and their parents with confetti when they leave. It is heartening to see someone on the road of recovery. The treatment continues for long even after a child gets discharged from hospital but getting out of here is a big deal and they celebrate it well.
January 7, 2007 (Day +2)
Nirali is starting to get effects of the chemotherapy she got earlier. She is feeling sick and has mucositis (sores in entire GI track). These are expected side effects and we have been told that she will get worse in next two weeks before getting better. She is on pain medications to ease the discomfort. Her blood counts are on the low end as expected so she gets packed red blood cells(Hemoglobin) and platelets whenever they fall below certain level. She is getting some white blood cells(granulocytes) from mom six days out of a week.
We pray that she doesn't get anymore complications apart from these expected effects.
We have received some emails and calls asking us "how did the operation go on 4th". There is no operation/surgery involved in cord blood transplant process. Here's a very short and helpful description of transplant process http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Undrstnd_Treat_Opt/Lrn_BMT_Cord/index.html#process
January 4, 2007 (Day 0)
Cordblood was transplanted between 1:25pm and 1:45pm Eastern time. GROW CELLS GROW.
We are forever indebted to the mother who decided to donate this cord blood. It is amazing that the little 83 cc bag of cord blood has the power
to save a life! I hope reading this inspires future mothers to donate or save the cord blood at the time of their child's birth.
January 3, 2007 (Day -1)
Nirali's preconditioning is going on. On day -3 she got a drug called ATG. It gives high fevers, skin rashes and some other temporary side effects. Nirali got pretty high fevers as expected. She was very uncomfortable all night. She did better on second day with the same drug. The same drug is given today also but it's the first dose that gives most trouble. Hopefully she will get no fever today.
Mom got a central line placed this morning to be able to give Nirali granulocytes (white blood cells). These will giver her some protection against serious infections. Since mom will not be able hold Nirali for a day or so (not allowed to take weight and site is quite sore), dad will have to do extra duty for couple of days.
We finally got a bed for Nirali instead of crib. The doctor agreed that we have given it a good try and Nirali really doesn't like the crib. We are hoping the nights will get a little easier now.
Tomorrow is transplant day. It is almost a non-event but an important point in transplant process. Please pray for Nirali that her body will accept the cord blood well and also the cord blood will accept Nirali's body and start producing blood cells.
December 28, 2006 (Day -7)
Nirali is in the hospital. She is trying to get adjusted here. She stopped sleeping in a crib since she got sick, she needs someone next to her. Here doctors recommended very highly that she sleep in a crib. So nights are quite interesting! Let's hope it gets better. Preconditioning chemotherapy is going on. Her blood counts are starting to fall as expected. So far she is active and in good spirit. She wants to play and walk around.
December 25, 2006 (Day -10)
Today Nirali did ok with chemo and she was fine afterwords too. She also ate a little in the evening. She gets admitted to hospital tomorrow. She has to be in hospital for quite a few days. We will try to update the website regularly. Thank you all very much for your wishes and prayers. Here's a picture we took today.
December 24, 2006 (Day -11)
Today Nirali got the first dose of chemo for transplant. She was fine at the time but got sick at home in afternoon and threw up the anti-nausea medicine we gave her also. We had to take her back to the day hospital for IV medicine. They also gave her some fluids by IV expecting that she may not eat tonight. They were correct - she has not eaten dinner today but she is holding liquids ok.
December 21, 2006
Nirali has gone through all kinds of tests since we came here. Most of the test results are back and Dr. Martin (Nirali's primary transplant physician) has confirmed that transplant preconditioning will start 24th December. First two days of treatment will be outpatient and she gets admitted to hospital on 26th December. Pre-conditioning treatment is for suppressing her own immune system completely. She has 11 days of preconditioning which means January 4th will be the day when she gets the donor cord blood transfusion - this is called day 0.
December 16, 2006
Nirali is going through a series of tests at Duke Medical center where we have come for her transplant. If the test results are favorable, the pre-conditioning for transplant will start on 24th December. She is keeping in good spirits so far. She has adapted well to this new place.
December 6, 2006
It has been crazy couple of weeks - an emotional roller coaster. The doctors have said that she did not relapse. It was the combination of drugs that sometimes does that. The subsequent tests done showed no blast cells which is good. She is in remission now and we are getting ready for transplant.
November 27, 2006
The blood test results from 20th (last Monday) confused Nirali's doctor quite a bit. It did not show that she had relapsed but it seemed like she may have some other problem in addition to her ALL. We are also very confused and concerned. Don't know if we should be happy that she may not have relapsed or worry about this possible new problem. They have done a bone marrow test today to get more clarity on the situation. They are also getting second opinion from another center where her test slides have been sent and we are waiting for their comments. We hope today's bone marrow test will give clear result - it is very disturbing not knowing what's going on.
Her chemotherapy is going on. She is tolerating it ok - steroids make a bit moody but otherwise she is doing ok.
Bone marrow match:
While Nirali has not found a bone marrow match from a donor, she has a cord blood match. Cord blood is donated by willing parents at time of child birth. It usually has enough cell dose to use for transplant in little children. Nirali has found such a cord blood which has been put on hold for her. More information on cord blood donation: http://www.marrow.org/DONOR/Donation_Transplant_Process/The_Donation_Procedure/CB_Donation/index.html
We don't have words to express our gratitude toward our family, friends and so many volunteers who helped us in organizing bone marrow drives across the country and even at some international locations. And special thanks to all of you who have registered to be potential bone marrow donors. You have given hope to many many patients like Nirali. Thank you so much...We are touched that so many of you are worried about her and ask about her health. We will try our best to keep the site updated. Thank you all for your support and prayers.
November 17, 2006
Nirali started induction (the first phase of chemo she went through) on Monday again. This time some of the chemotherapy medicines are stronger than last time. The steroid being given is also stronger. She is starting to get side effects of steroid already - she is cranky, the smile on her face becoming less frequent and she is having a hard time getting good sleep. We pray that all this hardship results in remission so she can go in transplant.
November 11, 2006
Nirali's cancer has relapsed. This is really bad news as this greatly reduces her chances at life. Monday we start RE-induction and hope that she goes back into remission. If they are successful she will immediately go into transplant.
November 9, 2006
Nirali came home on Monday when she wasn't running fever for more than 24 hours. The blood test showed that she had some infection so she is on antibiotics. Her stomach is a bit upset with heavy antibiotics but in general she is doing ok. She is running around and playful. These days she is a big fan of movies 'Jungle Book 2' and 'Pooh's Heffalump movie'.
>> Giving medication to her "Chemo Duck" with a hug and a kiss (imitating us giving her medicine!)
November 5, 2006
We enjoyed a week at home this time before Nirali got fever. We came through ER yesterday and got admitted to hospital. She does not have high fevers but her hemoglobin and white blood cell counts are very low. She got blood this morning. She is in good spirits and cheerful. The last chemo drug's effect are felt a week from the dose so that is what is causing all her blood counts to be so low. We are hoping her counts recover without her getting any more infections.
October 29, 2006
Nirali completed her current chemotherapy protocol yesterday. She is back home and in good spirits. This chemo was quite toxic and the doctor has told us to expect fevers in next few days so we are keeping an eye. She is more playful these days. We are still working on her eating. It is improving ever so slowly. The doctor has decided not to put NG tube if she keeps taking some food by mouth.
October 21, 2006
<<< Excited as we are going home today :-)
Its good to be home.>>>
October 20, 2006
Nirali spent five days at home before getting admitted to hospital yesterday for chemo. Her mouth sores are almost gone and eyes are also better. Eating still leaves a lot to be desired but she was tolerating her NG feeds well. We are glad she was able to spend some time at home in these last few days. She had a good time at home.
She pulled her NG tube out when we came to hospital yesterday. It is very painful to put it in - she cries a lot when it gets put in. The doctor has decided to hold off on putting the NG tube again and wants to encourage her to eat her regular food instead. We will try that for couple of days. This chemo medicine also has light sensitivity as a side effect and most of this protocol chemotherapy has upset her stomach a lot so let's see what happens this time. She is also getting some fever which is a known side effect of this chemo drug.
October 13, 2006
Nirali was not able to keep any feeds in stomach so we came to ER in less than 48 hours of going home after chemo. She was very sluggish and developed some mouth sores and light sensitivity because of chemo. She has been admitted to hospital once again - no food/milk/water for 36 hours again! After that she was started on some fluids by mouth on day before yesterday and some formula via NG tube yesterday. She threw up the formula so that has stopped. Her tests came positive today for some bacteria so she has been started on antibiotics. The sensitivity to light is improving very slowly so she is going to get an eye exam today. According to the doctor, the mouth sores will take a few days to get better. After three days of getting some nutrition through IV, she is more active although she will have to be able to tolerate her feeds before she can be discharged. Unfortunately she doesn't seem to get a break - she has spent more days in hospital then at home since she was diagnosed with ALL :(
October 9, 2006
Nirali went through another round of chemo therapy in hospital for last four days. She is back home but her stomach is quite upset from chemo. She is not able to tolerate her feeds through NG tube despite anti-nausea medicines. According to doctor, it should go away in day or so. This time the chemo therapy is also making her very sleepy and lethargic - her activity has reduced quite a bit. We are hoping that the nausea will go away soon and she will gain some strength back.
October 3, 2006
Nirali's fever got better in 2-3 days in hospital but she started having abdominal pain again. This was very concerning with history of her surgery which was just a few weeks ago. She was once again not allowed to eat or drink anything by mouth for two days which seemed to help the pain. The CT scan was done on Friday which didn't show any specific infection. She was slowly allowed to eat again but is not very interested in any food. She continues to get nutrition through her NG tube. We were allowed to come home yesterday after the stomach pain was better. She is happy to be home and enjoying couple of days before next chemo treatment.
September 26, 2006
Nirali is showing improvement in motor skills and is able to walk a few step by her self. She isn't eating much but she started tolerating the NG feeds. The Chemo has really drained her counts so she got some blood today. Unfortunately yesterday she started getting fever so we are in the hospital getting tests. Since the fever she is little sluggish.
September 20, 2006
Nirali completed the 5 day Chemo course. She has improved movement and is able to turn and situp and even wants to standup by herself. She wants to try and stand by herself without any support. This is a great improvement. Her diet is still lacking however the doctors are not too concerned (can't say the same for the parents). The doctors think it will sort itself out soon.
September 17, 2006
Nirali has started phase 2 of Chemotherapy on Friday. This first dose takes five days. She is showing improvement in her mood as pain from surgery is almost over. She wants to be taken around in the stroller. Her diet is still not as good and so she gets calories thru IV. As her activity improves hopefully her diet will also improve.
September 12, 2006
Nirali had showed some good progress over the last 48 hours. No fever and was able to situp without support. She also was taking some weight on her legs. The doctors felt it was time for us to go home and resume Chemo in few days. After we came home she took a couple steps while holding onto somebody. This is sight to behold after almost one month. Concerns still remain with her lack of eating and drinking. Home environment should hopefully help improve that.
September 10, 2006
Nirali is recovering from surgery in hospital. Low grade fevers still persist and she doesn't have much of an appetite so she is still getting nutrition though IV. She is more active now but still quite weak. Second round of chemo will be hold on until her fevers go away completely. She sat for few minutes in the hospital stroller. This is good progress.
September 10, 2006 - Bone Marrow search update
Regarding finding a bone marrow match for her - the preliminary search resulted in 3 prospective donors being tested. There was no match. The transplant team will perform another preliminary search in the beginning of October - they said that new entries get added to registry at the end of the month. We are hoping that the results of recent drives will get added to registry by then. The search continues... If you haven't registered please do so at your earliest. If there is no drive in your area please take advantage of the home kit.
September 5, 2006
Nirali is slowly recovering from surgery. The activity level is going up little by little every day. She still wants to lie in bed mostly but is interested in puzzles,music and ofcourse Madagascar! She still has fevers which are expected post surgery but soon it should start getting better otherwise it would mean she is fighting some other infection now. She was not allowed anything by mouth for last three days. Today afternoon she was allowed clear liquids. She will continue on just liquids for another day or so before getting any solid food. Her second round of chemo will be on hold until she recovers from surgery.
September 1. 2006
Nirali's surgery went well. It was more involved than originally anticipated. She is back in the room and will be recovering for 3 days before she can eat or drink. She is getting nutrition and medicines thru IV.
August 31. 2006
Nirali got really sluggish and wasn’t eating much on Tuesday so we went to the day clinic yesterday. Her doctor was concerned that that her fever had not gone away so she ordered some tests and we ended up getting admitted. Today they did another CT scan and this time they found an abscess next to the appendix. Tomorrow morning she is going in for surgery to drain the abscess and possibly remove the appendix. Right now her Chemo is put on hold until the fevers go away so let’s all pray that the surgery tomorrow stops the infection and fever so that her next phase of Chemo can be started soon.
August 29. 2006
Nirali's stomach discomfort continued somewhat after coming home on Wednesday - still not recovered totally. She had low grade fever since Thursday onwards which concerned the doctor so we were in ER on Sunday evening. They have changed antibiotic one more time to see it helps with fever. They have also taken out her PICC line ( used to deliver chemotherapy, antibiotics, IV fluids) thinking that may have gotten infected and could be the cause of fever. Her food intake is still quite low which is a concern but we are really hoping she feels better and enjoys this week at home before her next round of Chemo starts on Friday. She also needs another PICC line put in for which she will have to sedated. Her nurse is working on scheduling PICC line insertion also on Friday so we can get it done on the same day - I hope she succeeds and we don't have to go before Friday.
There were many many marrow drives held last weekend - all over the US. The response was truly amazing and humbling. Thank you so much - all volunteers, friends and family for organizing the drives so quickly and effectively. And most of all thanks to all of you who came forward to register as potential donors - you are giving hope of life not just to Nirali but many patients like her. There are still many drives being organized, if you do want to register and haven’t had a chance yet, please check the upcoming drives section to find a suitable date and location.
August 23, 2006
We are back home. The MRI showed a bit of inflamanation in pelvic area so doctor has changed one of the antibiotics. And tonight is the last dose of steroids so according to doctor, I will get my little girl back once that stops! Her mood swings and irritability will get a lot better. I can't wait for my ever smiling daughter to return to herself. We will have to give some steroids with next round of chemo but not this kind. She only wants mom and dad these days so both grandmas are also waiting for steroids effects to go away so she will play with them! Her face has ballooned up a lot but hopefully with no IV fluids and no steroids, it will start going down. Next hospital visit will have to be for five days for next chemo round. We have requested that it start on Sept 1 so we can take advantage of Labor day weekend.
August 22, 2006
We are still in hospital. Nirali went through some serious laxative to clear her stomach. She wasn't allowed to eat or drink anything while on laxative so yesterday afternoon was very tough. The laxative had emptied her stomach and she wasn't yet allowed to eat. She was very hungry and it was nearly impossible to distract her from asking for food. Finally the doctor allowed her to drink clear liquids and eat crackers. She is tolerating food well but different doctors had different opinions about her level of discomfort so they want to make sure they check out if there's a more serious problem. So, an MRI was ordered. Today morning was fasting again as she would need to be sedated for MRI. Almost at the last minute we found out that MRI was cancelled for today due to some emergency cases and is now scheduled for tomorrow!
Meanwhile her doctor decided to do the spinal tap and bone marrow test procedure today instead of Thursday to save us a trip in case we get to go home tomorrow. The bone marrow test will tell us if she is in remission as expected after the induction phase.
She has been eating today and is in much better spirits then last two days - enjoying her favorite movie - Madagascar. We are hoping the MRI won't show anything alarming and we can go home tomorrow..
August 20, 2006
She was very uncomfortable all Friday night and was running fever on Saturday morning. They don't take any fever lightly with ALL so we were asked to come to hospital. With her abdominal discomfort doctors seemed to fear that she has some very bad infection in her stomach and we have been going for CAT scans and number of X-rays. Fortunately, the CAT scan and X--rays didn't show any infection but showed that she has very bad constipation (all the crackers and gold fish - she doesn't like any other food these days due to all her meds). So now we are working on clearing her stomach and all extra strong antibiotics have stopped! She stopped eating on Saturday morning and she can't eat anything solid until her stomach is completely cleaned up. This fasting has made her pretty weak. But we are hopeful that once she can start eating, she will feel a lot better. It seems like we will be here in hospital for couple of days.
Thank you everyone for showing tremendous support. We truly appreciate your support - in terms of your wishes and your willingness to register for marrow donation. I hope the day comes very soon when every person looking for a donor, will find a donor in registry.
A lot of people have asked about registering for marrow donation from India. The capacity to get people registered for marrow donation in India is very limited right now. We are working on it to see if we can get more people tested. First we are working on getting first and second cousins/extended families tested. The financial impact is also not small unfortunately. While I am so happy to see how many people have come forward to to get registered, it is a reality that we are not able to get everyone tested in India right now. So, please bear with us for a few days. I will post updates right here about how/when we can get more people tested for marrow donation in India.
August 18, 2006
Here is a recent picture of Nirali. She is also retaining water now so she is ballooning up - even though really she is losing weight her face looks big. And the photograph is pretty rare because she hardly smiles these days.
August 17, 2006
Today was the last round of chemotherapy for induction(first) phase. Two weeks break now before next round of chemo which will have to be five days stay at the hospital. Next week she will have bone marrow aspiration and spinal tap to check if cancer is in remission state as expected. Now she is losing hair very very fast :(
August 4, 2006
The doctor told us that she has rare type of ALL - hypodiploid ALL and will need a bone marrow transplant. The dcotor has added one more chemotherapy drug to her treatment that is used for high risk ALL patients. The induction phase of treatment will most likely last till August 24th. Then the result from bone marrow aspiration will decide the next treatment.
July 26, 2006
Nirali is diagnosed with Acute Lymphoblast Leukemia. And started with standard chemotherapy treatment.