It was a very tiring weekend. I did a bike ride with Vani, a different ride with Vinay and one with Sudhakar. Most of the rides were in 97F sun, so I am tired. And so very happy.
I can't help reflect back upon some words I had written after 2 years of maintenance treatment. Vinay started treatment in May 2016... I wrote this in 2019.
"And just like that 2 years of maintenance treatment went by! Every single day Vinay has been getting chemo. Every single evening, he opens his mouth as we pop medicines in him, with no fuss, care or concern, or stopping whatever he is doing. The most disgusting medicines which in the 1st year we had to fight and battle him, now go down with no comments.
2017: Vinay started Camp Acorn at Parish, and a couple months later started gymnastics. He started school !!! He attended a year in the Dinosaur class at Parish and cherished every minute he could go back to school. I still picked him up every 2 weeks to go to the hospital, once for a finger poke for the labs, and once a month for a port poke and all the heavy dose chemos that get pumped into his body. He used to love it when I picked him up, and he cherished the time we spent together. After the miserable intensive treatment, he bore the pokes with a smile and didn't care about the discomfort. Every 3 months he still has lumbar punctures, thanks to using the nitrous gas, he hasn't had to stay hungry, no more anesthesia for lumbar puctures! He had his first travel trip 1.5 years after the cancer treatment started, to Schlitterbarn during Nov 2017, and he still talks about going back to South Padre island. He loved it.
2018: He got older, we had to celebrate his birthday and had a fun party at a jumping trampoline place! He attended Parish school camp acorn again, and is presently back in school in the Astronauts class, loving every minute. He has become far more aware of life, of people and has formed a great friendship with a classmate. His social and emotional development has been tremendous, and with it, our biweekly hospital visits have become more hellish. He no longer wants to miss school. He is now terrified of the finger pokes. He cannot stand multiple nurses pinning him down to poke him. He screams, yells, runs away, and says things like "bad nurses are trying to hurt me, they want to kill me, they want to destroy me....". Our conversations now go around me trying to answer his questions "Why do I have to go to the hospital? Why doesn't Vani go to the hospital? Do other kids get finger pokes? Why do I have cancer?" We have talked at length about what cancer is, and it is bad luck, and he is so brave. Giving him information seems to help him.
We have started visits with psychology to help him process the emotional trauma. It hasn't been easy on him. He still goes to the emergency room when his fever spikes, and last month we had 3 visits, and as luck would have it, they only occurred after midnight."
It is 2022, and Vinay is still processing "medical trauma". Childhood leukemia is the most common childhood cancer, and treatment used to be 3.5 years long... newer procedures have already reduced it to 2.5 years.
How much better can we get in the future?
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.
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.
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....