Day 220 – 226 – Proclamation at Mayor’s office

IMG_20190326_203245812_BURST000_COVER_TOPTuesday, 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 want to express my gratitude towards the Mayor, the committee members and the Hillsborough High School Ice Hockey Coach and the team…

I am sooo thankful to the hockey player who thought about me so deeply and first brought this to high school hockey coach’s attention. The Hillsborough High School Hockey team Coach and the team has been so generous in showing their support and

love towards me that I feel very motivated and happy. The Ice Hockey team also showed me that not only they are physically strong to play the tough game of ice hockey but also they have very big hearts and they care for someone that they did not even know. I want to express my gratitude towards the Mayor, the committee members and the Hillsborough High School Ice Hockey Coach and the team for all the love and support that they have shown me and promise them that I will continue to fight this battle with positive attitude because I AM STRONGER THAN CANCER.

IMG_20190326_195520948I 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.

Rest of the week was quiet. My home nurse came 4 times this week to give me the chemo medication through my port and finally the needle from my port was taken out by the nurse on Thursday.  I was able to enjoy the good weather on Saturday, March 30th. I played with my brother and my friend for little while outside. But let me tell you, it did tire me out. I definitely need to work on my endurance. I think it was an excellent week with no problems and I was all set for the next week to start with the same routine.

Day 213 – 219

IMG_20190323_123235801Monday, 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.

Well I had a busy week with home instructions from my Spanish teacher twice in the week, my social studies teacher and I even started my violin lessons. I lost most of my hair this week but manage to comb the few that are left…haha!! I had the visit from my friend and his dad who is also the hockey coach. They brought me a present for me from the team, a personalized water bottle with the team logo, my name and number. That was awesome!! I had a great time with my friend playing knee hockey. He has grown so much taller than me!!  I told my mom that there are also advantages in being small….first you get to sit in the front row seat most of the time and also you can dodge the big guys from checking in hockey….LOL!!

On Saturday, March 23rd, I had an opportunity to go to Devils Hockey game against the Coyotes in Devils arena. Thanks to my Hockey coach who is also my friend’s dad, I was able to get up close to fist pump the Devils players as they were walking out to the ice rink. That was soooo cool !! Thank you so much Coach! I thoroughly enjoyed the game and stayed put on my seat till the end of the game as it was a very intense game which went all the way to shootout. Finally Devils WON!! It was worth the drive and sitting on the hard seats for around 2-3 hours.

Sunday was the lazy day and we spent talking about my brother’s dance competition which I missed and our experience at the hockey game. I got really pumped up after watching the actual game in real life and feel more motivated to go back to ice as soon as I am done with my intense phases oh chemo though the port.

Day 206 – 212

COLOR_POPWhat 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.

IMG_20190314_225711961So 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!!!

Even though I was not enjoying my look now but I was certainly having good time with the food. Since I did not have the chemo this week, I was able to eat very well and enjoyed every bite. I got to go out to eat once with my family and spend time in my backyard with the nice weather in the late afternoon when direct sunlight was not there as I need to stay away from that.  This is what I really miss….going

Day 199 – 205

After having such a good week, I was all ready for this week because I knew that I was going to get the steroids again. On Monday, March 4th, my blood counts went down and my ANC was 1130, Hemoglobin 11.8 which was not that bad. I actually handled everything on my own that day as daddy got an important call so he was sitting outside. I knew all my meds that I took in the morning and reported them to the nurse; got my port accessed and later my nurse took me for the chemo.

I would say that it was a rough week for me. The best part of the week was that I started with my home instructions for Spanish.  My home instructor was super nice! Thanks to her, I think I did well in my Spanish Quiz. Can’t wait to get the results. After first few days, I started with my back and belly pain. It was so hard to eat anything even though I had the urge to eat because my belly was so bloated that it felt like it was going to burst open. I know I made my dad go crazy as I would I ask him bring something from outside and then by the time he came I just could not eat anything. I would just lay down all the time especially in the evening time because my body felt so heavy and sore.

On Sunday March 10th, I was feeling really down with lot of pain in my lower back and the hip region. I was also sad that my grandma was going back to India. She took such good care of me and helped me a lot with feeding me with lot of patience. I will miss her a lot! But at least my other grandparents are here now with me to help me for next few months. Later that day, my pain got so bad in the back and the hips that I could not even sit or lay down. It was the first time, I just could not distract myself and stop my restlessness and complaining about my pain. My mom had to call the hospital to speak with the doctor to find out if I could take pain medication.  Thank god I was able to walk and move around otherwise I would have to go the emergency room. The doctor was okay for me to take the pain meds as long I did not have the fever. Oh! What a relief! It felt so much better after taking Tylenol and finally I was able to sleep through the night.

Day 192 – 198

Wow! What a wonderful week I had! It started when I went to the hospital on Monday Feb 25th for the blood counts; I was surprised by my results. My ANC was 4480 and Hemoglobin 12.7 which for the first time came in normal range.  Then the nurse told us that other than getting the chemotherapy medication in the hospital, I did not have to take any steroids at home. Also since my counts were good, I did not need to come back to the hospital until next week. I was happy with the idea of being able to stay home and if the weather is good then I could go out.

Slowly I regained my appetite; my taste buds were working again! I actually had pain in my back one day only. I was able to move around more easily but I still lacked energy.  I know I upset my little brother because he wants to play with me all the time like we used to but it is hard for me to move around so much and so quickly. I tried to explain it to him but he is too little to understand everything. I do feel bad for him though.

My parents had the meeting with my teachers, counselor and the social worker this week to discuss my progress and if I need the evaluation for the special education. It was so awesome to hear from my parents that my teachers are happy with my performance in academics, with my use of robot and think that I am very responsible kid. Hurray!!  I got to say to my parents “I told you that I know what I am doing. I am keeping up with my class and I am doing all the assignments that they are doing.” My parents looked impressed and said to me “You are one tough kid Arjun.”

It was overall a good week!

Day 185 – 191 — Start 4th Phase of Chemo

IMG_20190226_212445114On 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.

Next few days did not go as I thought they will. I had started taking steroids again and IMG_20190126_094833320this 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.

On Friday, I went back to the hospital for my chemo.  Everyone felt that I was not myself and was very quiet. The doctor said that the belly and back pain are the side effects of the Monday chemo medication. The mood swings are the result of the steroids but they will get better. I do not like Peg Asparaginase because it takes 2 hours to get it through the port and then I have to wait 2 hours more to see if I would get the allergic reaction to it. I could not attend the school on Friday because I was not feeling well when they were giving me the medicine in the morning.  The good thing about Friday evening was that I was able to enjoy my brother’s dance in the talent show in my old elementary school.  I actually stayed for the whole show because it was so interesting.

Although last few days were not a blast but I did feel better over the weekend. I had some good time with my grandparents who came from India for me and my little cousin. By Sunday, I started to eat better and felt more energy but this pain in my back was still there.  I ended my Sunday with the happy mood because my weight had increased to 61pounds even though I was not eating that much.

Day 175 – 184

IMG_20190213_180301266I 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.

I even got my grading for my second marking period and I was happy to see it as I got As and A+s which was so exciting! My parents said that they were proud of me and I felt confident that I can do it!

On Feb 14th Thursday, I had to go to the hospital for the echocardiogram and for the blood test. It took almost an hour for the tech to do the echocardiogram but my blood test results were good. my Hemoglobin went up to 11.1, no wonder I had so much energy to play around. My skin has started to look more normal too. Since my ANC was at 1170, my doctor said that I will start my 4th phase on Monday Feb 18th. My doctor also told me that I am going to have more thinning of my hair in this phase because it will be 5 chemo medications given within a month so I should be prepared for that. I think I am ready for my last intense phase to start no matter what the side effects are because they are just temporary.

On the weekend, i was able to spend time helping my dad, painting his home office and setting up the furniture which was awesome. I played with my little cousins, running after them, entertaining them. I even got to go to my neighbors /friend’s house and spent time with them. It was good to just get out of the house to do something fun except for going to hospital all the time. I am enjoying my FITBIT as it gives me an idea that every day I am doing more and more. I went up as high as 15000 steps. If I keep up with this and continue to eat well then I will be able to build my strength back in no time!