• An amazing $6801 raised, 13 night miles done on Sep 22.
    24 Sep 2022

    Coincidences are always interesting to observe, and Sep 22 is a strange date.

    Sep 22, 2016: Vinay started the dreadful phase 3 of chemotherapy.

    "The good news is that Vinay made counts this week. In fact this last week was the first time Vinay started eating like a normal kid, and felt a lot more hungry. It took 3 weeks for his body to sort-of recover from phase 2 of chemo, and his ANC was 1400 yesterday. The last 2 weeks it was 50 and 180, and we were wondering if he would make it to 750 this week, but the improvement is probably exponential.

    The sad news is that this new phase is hard. He had bone marrow biopsy, lumbar puncture, chemo in his spine, double sedation for a heart echo, and no food from 6:00am to 6:00pm, followed by admission into the hospital. He was begging for food all day, and when he was finally awake enough to eat, the new chemo started, and you can guess the first thing that happens: no more appetite. :("

    Sep 22, 2019: Vinay FINISHED his cancer treatment! He ate the last of his oral meds, and we were officially done.

    Sep 22, 2022: Yesterday Vinay had his FIRST survivor clinic appointment! It was an emotional day, we were reminded of all the potential side effects that will be monitored forever... given as a giant folder in-fact! The good news is that he is doing great, we continue to take it a day at a time.

    This week was so busy it zoomed past like a speeding train. I have 116 miles to go and only 6 days left. Thank you SO much to everyone who has been so supportive, we are very grateful.

    An amazing $6801 raised, 13 night miles done on Sep 22.
    Posted 3 days ago
  • Wow! $6251 raised, 54 mile ride done!!
    19 Sep 2022

    I was getting pretty anxious about the miles, and was so relieved to get a 54 mile ride in! Sudhakar joined me for the last 21 miles, and made it more fun!

    We were reminiscing about Vinay's last hospital chemo appointment that occurred on Sep 17, 2019.... exactly 3 years ago. He would get hospital infusions once a month, while he had to take oral chemo every single day, which went on until Sep 22, 2019. Sep 17 was the LAST hospital infusion day. It had turned out to be such a long and tough day for Vinay. Words below from 2019...

    "We were excited to be done, but it was surprisingly a very hard day. The blood draw for the port poke did not work, we feared a clot in the port, (which causes hours of delay). Poor Vinay got another IV poke to draw blood, he was so brave, but the vein got punctured, and blood was still needed. Luckily for him, the 20th flush of the port worked, and blood came out!! I cheered and whooped and celebrated —— yes we got the blood!! No more pokes!!

    Unfortunately it was not so. Poor guy wasn’t so lucky. When the chemo came, the port started acting up again, the blood stopped coming out. Vinay did jumping jacks trying to get the blood flowing, to avoid another poke, but it the 3rd poke was inevitable. His port needle was taken out and he got a new poke, after a bunch of cleaning and freeze spray that burned him. He kept screaming and then saying “I’m going to be brave” and holding still while shivering uncontrollably. It was painful to watch. It’s the last one!!!! "

    Thank you to all you AMAZING donors... I can't believe we have raised so much again for childhood cancer research! We are beyond grateful.

    Wow! $6251 raised, 54 mile ride done!!
    Posted 8 days ago
  • An astonishing $5713 raised! A 5 miler with Vinay done!
    17 Sep 2022

    This was a long week, I had trouble waking up this morning. Without alarms, I would have probably slept in until noon! After a long Friday, I was almost asleep again in the evening, when Vinay came to me with his helmet on and said he wanted to bike with me!

    I can never say no to him for a ride! When kids get cancer, they still remain kids. During the worst hospitalizations when Vinay was given the "bladder burning chemo"... if he could, he would ride a red hospital tricycle around the oncology floor! His enthusiasm warmed my heart then, and warms my heart now!

    I'm so thankful to all of you for supporting this cause for better childhood cancer treatments.

    Now if I can only put a dent in those mileage goals this weekend....

    An astonishing $5713 raised! A 5 miler with Vinay done!
    Posted 10 days ago
  • An unbelievable $3217 raised from 24 more donors! 12 miles more...
    15 Sep 2022

    I'm so grateful to all of you, for supporting this cause. Exactly this day 6 years ago, Vinay's neutrophil counts were low, which meant that his immunity was almost absent, and he could not get his chemotherapy yet... and would be given chemo the next week.

    "He did not make counts. His ANC was 180, a little more than 50 last week, but nowhere close to the desired 750. He did receive a foul medication through an inhaler, in place of his weekly antibiotic to protect kids undergoing chemo from a certain pneumonia, which was a really hard for my Dad. My Dad was the one who stayed with Vinay for this appointment, by the time I was able to return to the hospital, Vinay's appointment was done, and they were ready to go home. My Dad described how much he struggled against the inhaler medicine, kept pulling the mask off, he does fight extremely hard! The regular antibiotic he gets (Bactrum) apparently can lower his ANC further, so we skipped it this week, and got that inhaler medicine instead.

    Apparently if his counts don't come up by next week, they will consider giving him something through the bone marrow (I don't really know what), and that sounds pretty scary to me. "

    What would we have done during those days without my parents and family to support us all?

    Thank you so much to all of you for helping me meet with fundraising goal (and counting!).... what could we do without all your support?

    An unbelievable $3217 raised from 24 more donors! 12 miles more...
    Posted 12 days ago
  • $914 raised, 13 early morning miles done!
    14 Sep 2022

    I'm so grateful to everyone who has donated, I'm going to try my best to catch up as I'm riding a mile for every $10 donated!

    This morning, it might have been tedious to ride in circles but my mind was far away. I remember the conversation the doctor had after the 1st month (called Induction). Here is something I wrote back in the day:

    "We met with our doctor a couple of hours after he came out of PACU, and she told all of us (my parents, Sudhakar, myself and kids) the plan for the next many months. The results from the bone marrow biopsy (called MRD : minimal residual disease) would determine which risk category he fell into. This is a risk for relapse.

    1. MRD < 0.01% HIGH RISK

    2. MRD > 0.01% VERY HIGH RISK

    Vinay had 0.03% MRD, so he falls into the Very High Risk category. This means he has a greater chance of relapsing. Each category is treated with a different plan, "High risk" category has lesser drugs, while "Very high risk" has a more intense therapy, to counter the increased risk of relapse. The drugs are toxic and can cause secondary cancers, so they don't want to give them to every leukemia kid, just as much as they need.

    1. He will get a port inserted under his skin which will directly access the main veins in his heart. It will stay there for the duration of his treatment (3.5 years)

    2. We will have to learn to give some drugs through his port. A nurse will teach us that next week.

    3. One of the chemo medicine is so potent that it will burn through his bladder if it is allowed to stay there. So the chemo will be given after hours of hydration, so he is peeing a lot, and a lot of hydration after the chemo so it is all flushed out of the bladder. Hence hospitalizations are necessary for the medication to be given.

    4. One other chemo is known to cause DNA damage and so can cause secondary cancers. He will be getting a few doses of that, because of his "very high risk" rating, but not as much as people with solid tumors.

    5. We will be doing Dexamethosone again -> the horrid steroid that causes lots of hunger and emotional disturbances."

    After going through all of that for 3.5 years... I can tell you, I despise every drug/poison/chemo we gave Vinay, with an irrational hatred I cannot explain. They saved his life.... and hurt him SO much. So I am incredibly grateful that we gave him the dreadful, horrid drugs.

    I cannot tell you HOW badly I want better drugs to exist. Some that can target the bad cells without destroying everything else in the process, thank you very much. So much cool work has been done in the adult domain, can't wait to see such drugs come out for kids.

    Each and every one of you are funding this research. THANK YOU.

    PS: Tomorrow Sept 14, is donation match day! Every donation is matched by GCC, and I'm matching $500 as well!

    $914 raised, 13 early morning miles done!
    Posted 13 days ago
  • WOW, $633 raised! Another 14 sweaty miles done.
    12 Sep 2022

    Today, Sudhakar joined me on a bike ride, with his brand new bike that he purchased just to support this cause. It was fun to show him my favorite route. He did not fall at all with his new clip-less pedals😬

    Today is a sobering day. It the anniversary of 9/11 after all. Sudhakar rode 21 Km in memory of the 21st anniversary of 9/11. Coincidently Vinay has been reading "I survived, the attacks of September 11, 2001" in school.

    Sept takes me back to a different phase of Vinay's treatment in 2016....

    Vinay was diagnosed with Acute Lymphoblastic Leukemia (ALL) in May 2016. The first year was a nightmare. There were 5 phases in the intensive year... he was finishing up phase 2 in Sept this time in 2016...

    From this time that year: "Vinay had a hard week this week. The previous week he had to get platelets and 2 chemos on Thursday, and blood on Friday. We had to go back this Monday to get platelets again, as they don't last for more than 72 hrs in the body. Unfortunately, this lab check was done by a finger stick, which was the most traumatizing event for Vinay (in recent memory). The nurse had to squeeze the finger to make the blood flow and that hurt him, and he pushed the collected blood out of the nurse's hand as he kicked in anger. The blood was dropped and the process had to be repeated. He cried for 2 hrs after that, saying "it's hurting, it's hurting". "

    I'm grateful that now in 2022... we mostly have to worry about helping Vinay with reading comprehension.

    WOW, $633 raised! Another 14 sweaty miles done.
    Posted 15 days ago
  • $258 raised, 22 miles biked!
    11 Sep 2022

    Wow! $258 raised already! Thank you SO much Christi, Vamsi, Jagdish and Vijay! I got 2 rides in, made it to 22 miles!

    It was an incredibly hot day to start a bike ride, but Ive made excuses for enough days. It felt great to actually start the challenge.

    I rode a few more miles around the colony with Vinay, who finally reads the text on the jersey "Riding to fight kid's cancer", and asks if it was because of him. The conversation got a bit heavy until Vinay saw a cute puppy and stopped to pet him!

    Vinay wanted to keep racing with me... he can be incredibly fast on a mountain bike! The brightest moon tonight, what a lovely ride it was!

    $258 raised, 22 miles biked!
    Posted 16 days ago
  • Challenge begins! 0 miles and $0 raised
    11 Sep 2022

    It’s that time of the year again… riding to raise money for Children’s cancer research through the great cycling challenge.

    Except I’m 10 days late. I deliberated internally for 10 days… really not wanting to do this. So much going on, so much time I want to spend with the kids.

    But the biggest reason, it’s not fun to talk about childhood cancer and it’s effects. As time passes…. We lucky parents whose kids have come out of the other side, with only life long side effects, would like to forget it all ever happened. We live in a state of uneasy truce.

    I wish I could say it is truly behind us. Every time he has an illness we worry about that-we-don’t-want-to-think-about. Every time he struggles with attention and retention, we remember the doctor’s words, “life long cognitive effects from methotrexate given into his spinal fluid…”. Vinay asks, “why is it so hard for me to read and understand what I’ve just read?”…. breaks my heart to see him work so hard, and try so hard. It’s times like that, all we can wish for is better treatments for the future. We are doing all we can for now for him anyway.

    So I’m back to riding for kids like Vinay… I believe we can do better.

    Since I’m so late in starting this challenge, I’m going to make this years challenge more unpredictable and fun.

    1. I’ll ride 1 mile for every $10 donated.

    (Until the fundraising goal is met)

    2. I’ll match every donation given (until a cap of $500). I’ll make that match on donation match day on Sep 14 (Wednesday).

    Let’s go kick cancer’s butt!!

    Getting ready for my first bike ride

    Challenge begins! 0 miles and $0 raised
    Posted 16 days ago