This week started with going to the hospital on Monday April 1st, morning and getting my chemo in the hospital first and then for next 4 days at home with the home nurse. My counts were low but still not bad. My hemoglobin was 10.1 still but my ANC went down to 640. I was feeling a little nauseous in the hospital after the chemo so they gave me Zofran. It only helped a little so I got Ativan too to help me get rid of the feeling. When I reached home, I felt tired and not so good. My body felt exhausted and warm.
I was sleeping a lot and could not attend my classes very well. I actually started to run a low grade fever for couple of days with the headache all the time. It was driving me crazy. Everyone at home was just trying to help me because I was very sad and in pain. My mom tied her scarf around my head and that felt good for some time but the headache came back. I was not eating well also which makes my parents so worried. My mom called the doctor who said that other than taking my temp every hour or couple of hours to see if it goes any higher than 100.5, there is not much they can do. I did not want to go to the ER so we just monitored the temp at home because I did not have the cough or stomach ache or throwing up. When my nurse came to the house for my medicine, she told me to drink a lot of water. I tried but nothing tasted good. Finally I went back to the hospital on Friday April 5th to see what is going on. After they checked my counts, the doctor said that the low grade fever is the side effect of my chemo medicine. I was allowed to take Motrin every 6 hours for headache since my platelet count was good.
I slowly started to feel better with taking Motrin within next 2 days. I think Sunday was my best day because I woke up fresh, ate better and was able to play with my brother. I did lose 2 lbs this week and did not do too well with my school. Even though I was attending the school through VGo, but I was not able to fully pay attention to what was going on because of headache. But I knew that I would be able to catch up with the help of my wonderful teachers!
Tuesday, March 26th, was a very big day for me. You must be wondering what happened. Well, I received the Proclamation for courage, spirit and inspiring attitude in the face of my battle with Leukemia from the Mayor and the Township committee of Hillsborough, NJ. Not only that, my Hillsborough High School Ice hockey team also received the Proclamation for showing the support and dedicating the first game and the season to me for good cause. I am an honorary member of the high school ice hockey team and was presented with the No. 2 Jersey from the team. They also gave me the pucks signed by all the players of the team.
I also met the Police Officers along with Officer Freddy from K9 unit that came to visit me on Halloween. It was awesome to see that they all remembered me and even invited me to stop by at the police headquarters to get a tour. Once I get my counts high, I certainly plan to go there.
Monday, March 18th morning, I was all prepared with food and overnight bag to go to the hospital and start my 2nd month of the 4th phase. When I got the results from my blood work, I was surprised to see that my ANC was still in 200s which meant I could not start the chemo. It was very frustrating because I was fasting overnight for the spinal tap. The thing that made me happy was that my weight was 63.5lbs even though I had not eaten since last night. On my way back, I had the craving for hot dog and my dad and I tried few places in the way but finally I got it at Quick Check. Man! That felt so good. On the way back home, I was thinking how I can eat better since I will not be getting any chemo medicine this week.
What a crazy week this was ! On Monday, March 11th, when I went for my blood counts, I knew they were going to be low and there it was only 210 ANC but my hemoglobin was still good 12.1. Thank God, I was not supposed to get any chemo this week. I told the nurse about my pain and she said that it may even get worse for few days before getting better but she was okay with one dose of Mortrin because my platelet counts were fine. I came home very tired and restless. Later in the afternoon, the pain in my back and the hips suddenly got so bad that I could not walk, sit or stand. I was screaming and crying, making everyone worried. My grandpa tried to help me by massaging but nothing was making it better. At last, my mom took my temperature first and then gave me the Mortrin which slowly started to work. By the end of the day, I was a different person and this continued for the days to come. I did not know that one dose of Motrin has such an amazing effect.
So the other interesting thing that happened this week was related to my hair. I was sitting at my desk attending the school and I just felt an itch in the back of my head so I scratched. You would not believe what happened after that. I got a big bunch of my hair in my hand. I could not believe it and touched the back of my head again…there it was a big bunch of hair again. So I knew it is really happening what the doctor had said that I am going to lose all my hair this month. In the evening I showed my mom the garbage bin in my room with the hair. My mom was shocked and started to get emotional. I said to my mom, “it’s okay mummy. The stuff happens and at least I will get good hair after all this is over.” My mom said that she was amazed to see that nothing bothers me and how strong I am. From that day onwards, I have been losing my hair crazily and they are everywhere, in my bed, on the blankets, in my hat, on the back of my shirts. So crazy! My dad and I have been joking around that I am going to go bald before him so I am going to look older than him soon…he should be listening to me now…LOL!!!
On Monday, Feb 18th, I started with my 4th phase of chemotherapy. It started off with the blood work and the spinal tap. My ANC was surprisingly down to 710 and I was scared that they will not start since it has to be at 750 but my doctor said, it’s okay to do it and I was so happy! After the spinal tap, I got the 2 medicines Vincristine and Doxorubicin through my port. I did not feel too good that day after I came home. It was very tiring and my body was aching so much. I actually threw up later in the day after which I just felt like sleeping with my dad. I got the good news and the bad news that day. The good news was that I did not have to stay there and will only go back on Friday. But the bad news was that there might be another phase added to my treatment because I was MRD positive after day 29. Even though it is not confirmed but I was disappointed because I was hoping to get it over soon so that I can get my port out. But then when I was talking to my mom, she explained that how important it is that we follow the protocol to get cured. I am okay with it now.
this time it was Dexamethasone. I was excited to see how crazy I am going to get about eating food like the first phase instead I lost interest in food because of the pain in my back and the belly. It was so hard to take so many medications morning and evening when you do not feel like eating anything. I became very quiet and sleepy all the time. I would fall asleep while attending the class. My dad was away for few days and I missed him so much. I was getting irritated with every little thing. When my dad came back on Thursday night, which was the first time I smiled. My mom was sad to see me like this but I started to feel better when daddy came.
I am writing after a long time since it has been going good after I came back from the hospital. I have been feeling good with no mouth sores but just decreased appetite. I was feeling tired few days after coming back from the hospital but it got better each day I was home and eating my yummy home cooked Indian food. I had my dad’s uncle and aunt visit me from out of state which was a nice surprise and the best part was that I was able to play with my dad’s uncle for hours in the basement, running around in the house and have lot of fun. It felt so good after a long time of just staying home with no visitors and not being able to go out.
On Saturday, Feb 2nd morning, I woke up so happy with my dad by my side. I am finally 11yr old. Everyone wished me Happy Birthday and I went on to playing on my I pad. Suddenly, I heard my brother and my mom singing Happy B’day with a huge bag of gifts. I was so surprised because I told them that I do not need anything. One by one I took my gifts out and I was so happy to get each one of them..Perfect choice of gifts ! As I was playing on my Roblox, I saw there is lot of money available to buy stuff. I looked at my dad, he smiled and said “Happy Birthday Arjun.” It was awesome. I got gifts from my brother and my grandma too. The best thing I got was Fitbit because now I can track my steps and it will motivate me to keep moving throughout the day. It can also check my blood pressure, my heart rate and calories burnt. I actually gained 3 pounds in last 10 days…sooooooo happpppy!!
birthday from my aunt and uncle which was a huge surprise. I actually had 3 cakes for my birthday, one on Saturday and 2 on Sunday. It was so awesome to be feeling good and being able to play with my littlest cousin, running after him all around the house. On Saturday, my friend/neighbor came over with a bag full of cards and a generous gift. When I looked through the bag, I found the hand made / written cards from my all my classmates. I am so Thankful to everyone who spent the time to make the cards for me and making my day so special! It was an overall a great Birthday weekend and hopefully I will be able to celebrate my next birthday on the ice with my team and with my classmates in school!