Bhavika Taunk cared for her son, diagnosed with leukemia | pediatric cancer | bone marrow transplant

DESCRIPTION

For Bhavika Taunk, life took a radical turn in 2017 when her four-year-old son, Kabir, was diagnosed with acute lymphoblastic leukemia.  After a bone marrow transplant, he went on an aggressive chemotherapy regimen for two years.  Kabir relapsed twice, but has been in remission since 2020.  Bhavika tells the story of how she cared for her son and how she reaches out to other parents of children diagnosed with cancer.

Bhavika, her husband and two young sons returned from a Disney cruise in April 2017, and both sons felt sick.  While her two-year-old son soon got well, things went from bad to worse for four-year-old Kabir.  He complained of bone pain, first in his wrists, then his ankles, to the extent that he could not walk.  Then he suffered from intermittent fevers and appetite loss.

Kabir was taken to a hospital, where after blood tests, Bhavika was told that a bad virus had settled into her son’s bone marrow and that he had been diagnosed with acute lymphoblastic leukemia.  She called her husband with the awful, collapsed on the floor and cried.  Bhavika said this was the most life-changing event of her life.

She went on to say the degree of helplessness accompanying such a diagnosis is overwhelming.  Up until Kabir’s diagnosis, she thought she could fix anything in his life that presented a challenge.  Bhavika says the biggest lesson with a child’s cancer diagnosis is the total lack of control and it is the worst imaginable feeling.

Bhavika says when caring for a child with cancer that words are very important.  She stresses that she doesn’t believe in “hollow encouragement because it is very invalidating to the patient.”  She says a parent cannot tell their cancer-stricken child that everything is going to be okay.

Kabir has been in remission since 2020, but still requires a great deal of attention and medical care.

Bhavika Taunk wants very much to come to the aid of parents of a child diagnosed with cancer.  She advocates for parents of Facebook and Instagram, while strenuously calling for increased funding for pediatric cancer patients.

Additional Resources:

Bhavika on Facebook: https://www.facebook.com/bhavika.v.taunk

Bhavika on Instagram: https://www.instagram.com/btaunk/

Bhavika’s small business supporting pediatric cancer: Birdsong Tea – Tea With A Purpose

TRANSCRIPT

Bruce Morton: This is the @CancerInterviews podcast.  I’m your host, Bruce Morton.  It is tough enough for a parent to learn his or her child has cancer.  It is tougher when the parent becomes the child’s caregiver.  That was the experience of our guest on this episode.  Bhavika Taunk of Danville, California became a caregiver when her son was diagnosed with leukemia.  She came to his aid and wants to come to the aid of parents everywhere whose kids have cancer.  Now it is time to hear her story, and Bhavika, welcome to Cancer Interviews.

Bhavika Taunk: Thank you, Bruce.  Thank you for having me.

BM: Bhavika, we want to start out by learning more about you.  If you would, tell us a bit your life away from cancer, like where you are from, what you have done for work, and what you do for fun.

BT: Sure.  I am originally from the East Coast, Alexandria, Virginia, moved to California from high school, so I am pretty much from here now.  I like to read a lot for fun.  I like to be with my dogs, relax, have a cup of tea.  There is now a lot of down time with what has been going on.  My past jobs had nothing to do with science and have everything to do with business and the retail space.

BM: This is about your son’s cancer journey, Kabir’s cancer journey.  When did you first notice that something with his health wasn’t right, and what was that wasn’t right?

BT: In 2017, we had gone on a Disney cruise, and when we came back from that cruise, Kabir, when he returned to preschool, both he and his brother, got a little sick, which could happen when they are reintroduced to germs they had been away from.  They tend to get a little ill, so we didn’t think much of it.  Then his brother got better and Kabir did not, then they started having different symptoms and Kabir started complaining of bone pain.  The first week included a lot of wrist pain.  We x-rayed it and there was nothing to be found.  There were questions raised about why Kabir was in so much pain, and nobody knew.  We were all concerned that nothing was found on the x-ray, but he was in quite a bit of pain.  So, we put him in a brace.  Then he started having intermittent fevers.  I might have been the only one that noticed that because his fevers would come in the middle of the night and they would go away, then they would come back in a few days.  It was difficult to say this was a virus because it wasn’t following any trajectory, but that being said it can be easily missed.  Kabir went on to have ankle pain the following week and he couldn’t walk.  He was four years old in 2017, and I was going to pick up his younger brother from preschool and Kabir could not get out of the car.  I had to pick him up, leave in the school office, and then went to get his younger brother.  That day I was very concerned because he couldn’t walk and now he said his legs hurt too much and that was with around-the-clock Tylenol and Motrin or some sort of pain relief for the fever.  I had been in and out of the pediatrician’s office throughout this time.  Those were the main symptoms, the fevers, the bone pain and appetite loss.  He wasn’t feeling very hungry but was complaining that his stomach was hurting a lot.

BM: And with those symptoms, what was the chain of events that led to his diagnosis?

BT: He wasn’t getting better.  He used to have pediatric asthma prior to the cancer.  It definitely dictated how I watched him and understood his medical picture.  Certain things didn’t make sense to me.  He would say he was out of breath, but when I would take his oxygen levels, they were normal.  Usually when he would have an asthma flair, his oxygen would dip.  That was likely a precursor training as to what was going to happen.  I had already been taking him to his pediatrician to get his oxygen levels checked.  The night before Kabir was diagnosed, I was sitting by his bed around 4:00 or 5:00 in the morning and I was crying.  My husband woke up and wanted to know what was wrong.  I said he should look at the way Kabir is breathing, he hasn’t gotten better.  I was wondering if he had picked up some strange bacteria from this cruise ship or one of the places we docked, no one has been able to figure out what is wrong and he is not getting better.  I am getting worried about him.  I had never seen him like this.  My husband thought Kabir’s breathing was due to the asthma, but I said this didn’t look like pediatric asthma.  I was really concerned about him and thought nothing about him was going to be by the book.  I took him back to the pediatrician’s office as soon as they opened the next morning and I called on the way in.  I seen the pediatrician, and she said if his breathing acts up to bring him back in.  She was not expecting leukemia, but I think she was expecting there was something pretty wrong.  Kabir’s color started looking off to me.  He looked pale, he had dark circles under his eyes. He looked really different to me.  Right away, my fears were validated because the pediatrician said his appearance was different from two days earlier.  At that point, I was very worried, and this was in the span of only two or three weeks.  This wasn’t a long time after we got off the cruise ship.  I said I would like to John Muir, a nearby hospital in Walnut Creek because I had had both my boys there and it is a little bit stronger of a pediatric hospital.  I said I would take Kabir to the emergency room, and she said she would send over some bloodwork.  We got there around noon and after some blood tests, someone came in and asked if I knew Kabir was anemic.  I said that couldn’t be true.  He has never had anemia, but this is the first I am hearing about it.  They said, “It’s 50-50,” but they didn’t say anything else, but never having a child diagnosed with cancer, I had no idea what they were referring to.  I asked, “What is 50-50?  What are we talking about?”  They said a bad virus had settled into his bone marrow or it’s cancer.  I was floored, but then with it.  Then just five minutes later, a nurse walked in said the odds were not in Kabir’s favor because immature cells had been found in his blood, and it’s not looking good.  They didn’t say the word leukemia.  They didn’t say much. They just said he had cancer.  You try to listen, but it is like you are underwater and it is blurry.  I tried going to the bathroom, but I collapsed to the floor and started bawling my eyes out.  A social worker came over and asked if they could help.  I told them, “I think someone just told me my four-year-old has cancer,” and I needed to call my husband.  That was the diagnosis.  I will never forget that day.  It was the biggest day of my life.  He went on to relapse twice, which was shocking, but the first time you hear your four-year-old has cancer, it will be the most life-changing day of your trajectory.  That day, nobody said anything to us that this was leukemia.  I finally asked them about six hours later if this was treatable.  Is this curable?  Is he even going to live?  I had no idea at that point what we were dealing with.  So, that’s when he was diagnosed.  There could be very big symptoms or symptoms that could be easily missed.  Kids get sick so often when their immune systems are developing that symptoms could be easily missed. 

BM: By the way, we hope you will find time to like and subscribe to our channel, and if you click on the bell icon, you will be notified the next time we post an interview.  We want to remind you we are not distributors of medical advice.  If you seek medical advice, please contact a licensed health care professional.

Bhavika, you have gotten this horrific, daunting news, and we have heard how you handled it.  How did Kabir handle it?

BT: Initially, the shock was less.  He had no understanding of what was about to happen.  He probably thought he would go to the hospital and get some medicine.  But then soon, and it didn’t take long, the reality of it started to show and set in.  They took the bone marrow biopsy or the bone marrow aspirate, where they take the bone marrow and they actually look at it.  He was initially diagnosed with leukemia, and at that time, they didn’t know what kind.  Next, they sent out a cytogenetics report, which tells them what kind of leukemia it is.  Hopefully, nothing is found on that report, but unfortunately something on the report was found and his diagnosis was the Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia, or, PH+ALL.  I bring that up because initially he was transferred to a hospital.  It was very scary, but at four years old, I don’t think he understood quite what he was dealing with.  But soon, he started getting frustrated.  He was angry and wanted to know when he could go back to school.  The care team initially said the “roadmap” for the treatment was going to go about two to two-and-a-half years long.  That is very long to wrap your head around.  That sounds like forever.  Kabir ended up having two years because the PH+ version is a high-risk version, so he got high-risk chemotherapy.  That said, we started seeing mood shifts in him early on.  He is an ‘old soul.’  Providers would often say there was no way he could have depression at this age, but he absolutely did.  After two or three weeks, I knew my life would not be returning to normal.  I had zero control over the situation.  I had no control over his pain.  He was starting to become very frustrated.  He had a lot of love and support, but I tried to stay away from toxic positivity.  We can’t expect cancer patients to be upbeat all the time.  There are the excruciating side effects of the chemotherapy, and it is so hard for them to carry the mental, spiritual, psychological load on top of the physical load, so they really need the support whether it is an adult or a child.  The day before he was diagnosed, he was home with me.  He had been home for weeks, leading up to his diagnosis.  He asked me if he could have this house one day so he could sit there on Friday night with his kids.  This, from a four-year-old child.  Kabir is an old soul for as long as I have known him.  He really processed what was happening to him, after a like a preteen, the entire time.  Now, he is a preteen.  He has been going through this nine years.  It is almost like he is an adult.  He has grown up in hospitals, around doctors, with very few children around.  Sadly, that is his reality.  He can be a kid, but processing all this was pretty difficult for him.  They gave him a lot of medications which affect your mood and how you deal with things.  A lot of steroid pulses were used in pediatric cancer, an immense amount.  The steroids are so heavy.  They are responsible for pushing the cancer cells out of the bone marrow so the chemotherapy can attack it.  When you get these pulses, you are dealing with all of it, roid rage, hunger, anger, all of it, making it very tough on a kid.  Of course, he was strong and he was positive and he danced and he loved his nurses, but it has been hard, especially as the years have gone on.  There was this vision of it will be over soon and when that didn’t happen, I think I saw his spirit break. 

BM: I have to ask, as a parent, you like to think you are, in large part or in whole, you are in control of the raising of your child.  But given the enormity of cancer, to what degree did you feel a sense of helplessness?

BT: To 100 percent of a degree.  Helplessness is the number one thing we feel.  Helplessness is the feeling I struggle with, even today.  Until something like this happens in your life, a life-changing event, you believe you have control.  When something like this happens, you realize how little control in life you really have.  You can go to the best schools, you can have the best jobs, you can be financially sound, your home, everything can be in order, and then you think you have a future planned for your kids, at least some vision of it, even if you are not trying to control every aspect of their life.  But then, something like this is a complete derail, you know, derailing of your life, and your trajectory of what you imagined it to be.  I think the biggest lesson, the biggest humbling lesson is that you don’t have control, and to how to sit with that helplessness and not let it eat and still remember maybe it’s five percent, maybe ten percent, but these are the things that I can help him with, but to feel helpless when your child is battling cancer, I still don’t know a worse feeling. 

BM: Bhavika, if I am hearing you correctly, that when it comes to encouraging your child, quality trumps quantity, that you need to carefully choose words that will resonate with him, and stay away from a lot of hollow words.  Is that fair to say?

BT: Absolutely.  They are smarter than we give them credit for.  This generation is already dealing with mental health, things like that.  They have lived through the pandemic. Kabir went through his bone marrow transplant during the pandemic.  I think this generation, between the internet, YouTube, social media, my kids don’t have all those things, but the exposure to this stuff, I think we have to give them credit for where they are and meet them where they are.  It’s really a fine balance in which I don’t believe in the hollow encouragement because it is very invalidating to the patient.  You have to find the delicate balance between stating you know it is difficult, but we don’t have a choice here, we love you, you love yourself, and we have to keep fighting.  You can’t just keep telling them it’s okay.

BM: At this stage, I think viewers, listeners, especially those among them who are parents, they are wondering, at age thirteen, how is Kabir doing?

BT: Kabir is struggling.  I will start with the good news.  He is in remission.  He went through two years of chemotherapy and that is a lot of chemotherapy, but here is something people don’t know about pediatric cancer that is seriously understudied and underfunded.  It gets four percent of the NIH’s budget.  That number is debated, but let’s be real.  It’s four percent.  That’s what it was I began this battle and that is what it still is.  What that translate to is cancer getting my very old and toxic chemotherapy.  It is very harsh for a child’s body.  Kabir received two years of chemotherapy.  Even one or two doses affect their hearts down the line.  With that said, he relapsed within six weeks.  He actually never fully went into remission.  There was a huge medical error that happened on his case, right off the bat.  We then fought hard to take him to Philadelphia to get him CAR-T immunotherapy and a little bit of chemotherapy as well to keep him in remission.  He unfortunately relapsed again, in the middle of the pandemic, then he had a bone marrow transplant.  Then he had a haploidentical, which is a half-match, and his brother was his donor.  The best news is he has been in remission since 2020.  The difficult news is, he is not well.  His immune system is dysregulated.  The care team said Kabir’s immune system has not reset in five years and that they don’t think he will get better, which was very hard to hear.  So, from September 2025 onward, we have been living in a different sort of a headspace.  There has been a lot of grief.  We are worried we are going to lose him.  We are trying our best.  I don’t if it is a blessing, but the flag has been raised as to the capacity of the local hospital, so now I am doing my due diligence to get second opinions and third opinions, taking him to places that specialize in immune dysregulation.  So, it is a blessing and a curse that we got the news.  That this has happened to him is very unfortunate.  This is not what five years old from a transplant is supposed to look like.  He is actively quite ill.  He goes in for infusions very frequently as he is suffering from severe immune dysregulation, where the T-cells and the B-cells are not acting the way they are supposed to, and they are attacking him.  That has taken a toll.  I remember his mental health really beginning to struggle then.  He is facing his own mortality, and he knows we have not given up.  He knows we are trying very, very hard.  He has been accepted into the Undiagnosed Disease Network.  We are trying very hard to get him a treatment course.  Unfortunately, he is not doing too well, and that is the reality with a lot of these kids.  The treatment is too harsh, his spine was damaged, the treatments are very toxic.  There are pediatric cancers that have a zero percent survival rate, and in those cases, the diagnosis is a death sentence.  Now, Kabir’s wasn’t like that, but he went on to have it three times, and very toxic adult protocols.  The bone marrow transplant protocol is based on adults.  It is a lot of guesswork and these kids’ bodies are not able to handle it.

BM: Bhavika, if you take all you have been through with Kabir, that has definitely rubbed off in how you want to help other parents who kids have been diagnosed with cancer.  What are you doing to help them?

BT: Sure, both on Facebook and Instagram, I journey about grief, about cancer, without it being medically overwhelming.  I do give updates from time to time, what we are looking for.  I recently spread the word that we need a pediatric immunologist that specializes in these types of immune disorders. What I am really trying to do, and I think it transcends cancer is really tell parents they are not alone.  If I can reach one or two or ten cancer parents, you watch their child’s journey, they watch your child’s journey, but you are really all supporting each other.  Because the resources are limited, it is not like there is huge support groups happening on these pediatric hospital sites, so when we were diagnosed, there were two Facebook groups that we knew of.  Through my advocacy work, it helps me because I write and I read a lot, that’s how I process the world and consider what I can do to give back in terms of advocacy.  I talk about this because it really, really matters to me.  I am living it and I have watched it, politically, through legislation, trying to move that needle every year.  It is something I have given a lot of thought to, even if I move that needle five percent before I leave this Earth, the effort will have been worth it, not what Kabir went through, but what I could do with my grief because like I said, we don’t have control over all of it, but we have control over some of it.  There are a lot of parents who have walked into this blindly.  They have had their worlds turned upside down.  Some people don’t want to talk about really, really scary things.  Steroids have led to hallucinations for Kabir in the past, that happens.  It was so lonely for me in the beginning.  Not everyone is surrounded by hundreds of family members and not everyone you are surrounded by is going to understand what you are going through.  Pediatric cancer is this family that you don’t want to belong to, but once you are in it, we try and take care of each other.  Nobody is saying they want to pump money into this, but that’s where parents make the difference.  It is just something that has affected so much of my life.  It’s turning your pain into purpose and that’s what I am trying to do.  I really believe in the cause.  We have a small tea company, it is called Birdsong Tea Company.  We have developed a blend with Alex’s Lemonade Stand, which is a great pediatric cancer organization.  We give proceeds back from it to them.  It is something we always think about because has not had a day off from it since 2017.  He is either still living with the cancer or the core side effects. 

BM: Bhavika Taunk, Danville, California, thank you very much for an eloquent account of your and Kabir’s journey with cancer, something that resonates with anyone on a cancer journey, and the parent of a child on a cancer journey.  Bhavika, thanks for being with us on Cancer Interviews.

BT: Thank you so much.  I really appreciate it.

BM: This concludes this edition of the Cancer Interviews podcast.  As we always say when wrapping up, if you or a loved one are on a cancer journey, you are not alone.  There are people out there like Bhavika who provide information and inspiration that can ease the cancer journey.  So, until next time, we’ll see you on down the road.

Additional Resources:

Bhavika on Facebook: https://www.facebook.com/bhavika.v.taunk

Bhavika on Instagram: https://www.instagram/btaunk/

Bhavika’s small business supporting pediatric cancer: Birdsong Tea – Tea With A Purpose

SHOW NOTES

TITLE: Bhavika Taunk, Pediatric Cancer Advocate – Danville, California, USA

For Bhavika Taunk, life took a radical turn in 2017 when her four-year-old son, Kabir, was diagnosed with leukemia.  After a bone marrow transplant, he went on an aggressive chemotherapy regimen for two years.  Kabir relapsed twice, but has been in remission since 2020.  Bhavika tells the story of how she cared for her son and how she reaches out to other parents of children diagnosed with cancer.

Additional Resources:

Bhavika on Facebook: https://www.facebook.com/bhavika.v.taunk

Bhavika on Instagram: https://www.instagram.com/btaunk/

Time Stamps:

02:30 Bhavika says in 2017, her son, Kabir, started complaining of bone pain.

08:38 What led to Kabir’s diagnosis.

14:23 Said the diagnosis was life-changing.

15:25 Bhavika is asked to what degree did she feel helpless.

19:06 Said the toughest part of Kabir’s treatment was emotionally-based.

22:44 Shares her vision of care for Kabir during his teen years.

26:46 Bhavika explains how she can other parents of kids with cancer.

KEYWORDS (tags):

acute lymphoblastic leukemia

bone marrow aspirate

car-t immunotherapy

philadelphia chromosome positive acute lymphoblastic leukemia

haploidentical

methotrexate

immune dysregulation

pediatric asthma

cellcept

mycophenolate mofetil

ivig

intravenous immunoglobulin