Thursday December 20^th, morning was little rough as I was scared and nervous about my MRD results and blood counts. My dad and I reached the hospital early morning as usual. The nurse took the blood through my port and then we waited and waited. No one knew about the MRD test results yet. I got the first good news after an hour that my ANC went up to 1390. Hurray! That means I will start my treatment today. I was attending my school via the robot when I heard my dad asking from the doctor “What is the result of the MRD test?”  I quickly turned to hear what he had to say. The doctor happily said “It came out negative”. It means that my bone marrow is good and there are no more cancer cells. I got really excited and dabbed. I muted myself on the Vgo and started to dance in my seat. I could see my dad super happy and I could hear my mom over the phone cheering up. My dad said “Congratulations Arjun! This is the best news ever”. My mom was right. Everything is going to be good from now on.

They took me for the anesthesia for the spinal tap. Now I know how it goes so I told my dad that he could wait for me outside and I will be fine. Later, in the recovery room, the doctor was explaining about the chemotherapy medication I was going to get this time but I already knew all about it. My mom had told me that this medicine is very toxic so I will get another medicine to decrease the toxicity. I asked the doctor about what does the toxicity do to me.  Doctor was very impressed that I knew all about my medicines. He said “You are on top of your things. I think you will become a good doctor because you have good curiosity to learn about things.”

I was finally admitted to the pediatric floor in the late evening after a loooong wait in the recovery room. They had started my medicine in the clinic and it looked like lemonade. My dad and I were laughing saying that I am drinking a lot of lemonade. Everything was fine until the night when I started to throw up. It did not feel good.  Anything I tried to eat would make me vomit. One time it went into my nose too and I sneezed and sneezed..maybe 100 times. Next morning was the same. I could not even attend my class. Later in the day, I met some therapy dogs. They were cute, nice and soft. I love animals so it was a cool experience. I started to feel little better in the evening of Friday after they started the IV fluids.

So now they were checking my blood for the toxicity after the medicine. They checked at 24hrs, 42 hrs and 48hrs. I did very well on all of them I was less than 0.4 by 48 hr mark which means I could be allowed to go home on Sunday. I was happy but I do not like them taking the blood out again and again from my port because then they do the saline every time. It does not feel good going through my port. It is the hardest part sometimes. I also have to do these 2 mouth washes many times in the day so that i do not get sores in my mouth because of the medicine. it is tough in the middle of the night to do them.

My mom stayed over on Saturday with me. I told her that daddy did the hard part with my throwing up and now it is the easy part left for her. My mom and I spent time playing board games, walking in the hallway and watching the TV series together. But I still miss my own bed at home and playing with my brother. I cannot wait to go home. I hope my numbers are good enough for the doctor to send me home tomorrow!

Monday Dec 17^th, I was all ready to go to the hospital with bags packed, food packed early morning with the hope that I will start my 3^rd phase today and will stay in hospital for 4 days. We were all nervous to find out my blood counts as we waited and waited in the waiting room. I was feeling restless and hungry since i did not eat for last 13 hours. Then the nurse came with the news that I did not want to hear. My ANC was only 360 and i could not start the next phase. I was not happy. But I told the doctor that let’s get over with the MRD test since I was already fasting. Doctor agreed with me and they took me to the surgery room to do the bone marrow aspiration. We were all disappointed but at least we had one thing to look forward to. We came back home but now praying for my MRD test results to come back negative.

The worst thing after the bone marrow aspiration was the pain in the back. It was hard to walk and climb the stairs. It was hard to move around in the bed and get comfortable. My dad had to help me the first day. Good thing that kept me distracted was attending the class through the robot.

We were going back to hospital on Thursday to get the results back and for my blood counts to go up. I know my mom was very nervous and I even saw some tears in her eyes the night before we were supposed to go. I could not sleep in my room so I went to my mom and we both started talking. I told her that I was just scared that my counts would not go up again and then I will have to come back. I was tired of back and forth.  My mom said that everything is going to be okay tomorrow. Then I started to think that there are so many kids in this world that get hurt like they break their collar bone or wrist, get pneumonia but it’s not fair that they do not get such special treatment like me. I wish the treatment was like the flu shot. I said to my mom that I feel like I have more medical bills than my brother has toys. My mom said that I should focus on getting better and nothing else.

Thursday Dec 13th morning, I woke up after good night sleep in my bed. I was also excited because I could attend the classes via robot. It was so much fun to be able to interact with my classmates and do a group activity, group discussions and be able to participate in the class quizzes. I got my home instructions for social studies and literacy and next day for math and science which was good. I realized that I am almost upto date in all my subjects. Hurray!! But I still have to work on the assignments and prepare for my tests. That would keep me busy.

These days, the biggest challenge I have is to eat. I do not have any appetite and it is so hard to think what to eat. My mom and grandma are always busy making things for me hoping that I will eat but I take few bites and then I am done. It makes me sad and really frustrated. I want to eat so that I can gain some weight that I lost in last 2 weeks. I lost almost 3 pounds which is not good. I do not want the nasal feeding tube. It is the most frustrating part of the whole treatment.

It’s a big day tomorrow. If my counts are good then I will start my Third phase of chemo. Also I have to undergo my bone marrow aspiration to check the MRD. I know my parents are very worried about it because it was slightly positive last time. I hope God will help me this time and give me the good results so that I can be cured fast and have a normal life!

Monday Dec 10^th, my morning started off with the blood work at 5:30 in the morning and me feeling a little less cold. My tests results showed my hemoglobin 10.1 and my ANC still 30. I was still getting the antibiotics every 8 hours through the port and continuous IV fluids.  Good news was my temp came normal now. It was staying at 99deg.  Hah!..that was a relief! I still had to stay in the hospital because my ANC was still very low and they were waiting for the blood culture results. It was an okay day for me as I just was not feeling right. Best part was face timing with my mom, my brother and grandma many times during the day so I feel I am with them. I love face time!

Next morning, I was feeling much better and I had a good night sleep. My blood test results showed my ANC was 60 so it is going in the right direction but not high enough for me to go home yet. Not a good news but to cheer me up I got the great news. My hospital counselor went to my school with the Vgo robot to give the demo to the teachers.  I was speechless when I saw my teachers through the robot and that I was able to communicate with all my teachers and move it around through the controls on my Ipad. It was amazing! Later that afternoon, I was able to attend one of my social studies class which they dedicated to Vgo robot introduction into the class and everyone talking to me through that. It was soooo cool! It was the best time utilization with lot of fun. I felt like I was in the class and I cannot wait to be able to attend all the classes. Now I do not have to keep watching the ipad for unnecessary reason to pass the time. In the evening, I found out that my bacterial culture was also negative so I have no infections. So they stopped the antibiotics and I was okay to go home next day.  It was a great day with all the good news!

Wednesday morning, I was able to attend my morning literacy class and it went smoothly. I even did the small group activity with my friends which was awesome. Robot is a hit! My ANC was still 50 but my WBC were getting better so the doctor discharged me from the hospital. I was the happiest person today as I can go home to my family and sleep in my own bed!

As I was getting ready to leave, I met the Santa and the police officers who gave us a lot presents to take home. I got some good ones for my brother because he could not go to the holiday party because of me. It was a good and happy drive home thinking about good home food and my bed!

While I was still enjoying the Friday night celebration on Saturday morning, I was not feeling the best. I was little restless and very cold. This continued on Sunday as well but worse. On Sunday Dec 9^th, in the late morning, I was not able to eat anything, feeling lot of pain in my calves and super cold. I had a jacket on and a blanket and was still cold. My mom took my temperature and there it was 100.8 deg. A little panic started. My mom took my blankets off and then waited to take the temp again. It was 100.0 deg and the third time 100.2 deg. She called the doctor and then he said what I did not want to hear that I need to go to the hospital. A lot of panic with packing the bag, getting me ready, planning for the possible stay. My brother started crying because he was scared but he calmed down because my grandma was there. My dad carried me to the car as my legs were hurting really bad.

I was laying in the emergency room with my parents by my side and the nurses and doctors asking questions about how I was feeling. We were waiting for the blood test results. My temp came as 101.4 deg. They said that it was real fever and I was admitted. I was upset but my dad is going to be with me so I was okay. I do not like it when they put saline in my port but I did not have a choice. They were flushing my port with saline and started the IV fluid and the Antibiotics. I was not happy but I handled it as my dad said that I am a tough guy.  I took the whole Tylenol pill with water and my nurse was amazed to see that. She said I am a pro in getting my port accessed and taking the pills. I did not give them hard time at all. They were taking blood for the blood culture for bacterial infection and nasal swab for the viral infections. My blood test results showed my hemoglobin was 7.2, my ANC only 20. No wonder I had the fever. I threw up once as I tried to eat but then I was just feeling cold.

I was moved upstairs on the pediatric floor from the emergency room. I had to wear the face mask and all the nurses were wearing the isolation gown and the mask. When my viral infection test came out negative then we could stop the mask and gowns. Later in the night time, I got one unit of blood transfusion. We were hoping that it will help me feel better. My temp was still fluctuating between 99.9 and 100.2 deg. I was restless but was able to manage sleeping in the night.

It has been going okay and I have been keeping myself busy at home with books, games and ipad. I received the Olympus book series which I have started to read and it is keeping me quite busy. I am also trying to finish my assignments given by my teachers but sometimes I get overwhelmed to see so many things. It is hard to get everything done for the whole week in 2 hours but my teachers try to make it simple for me.

One interesting thing that happened was that I got a call from the high school hockey coach. I spoke with him about my health, about what position I play, about my favorite team and favorite players. He even said that when I get better then he will be happy to coach me. One of my other coaches has also told me the same thing. I cannot wait to get better and learn from all these super coaches to get back to my team again.

Friday Dec 7^th was a big day for me. It was full of surprises! I found out that the Hillsborough High school hockey team has organized a puck drop ceremony for me at one of their games against Ridge Red Devils. I thought that was really cool! My parents took me and my brother and we entered through the side entrance. I saw that the rink was full of people. Then I saw the High school Hockey coach coming towards me. I was so excited to see all that happening. I was only doing fist pump and no shaking hands. We stayed in the office where it was slightly warm till we were ready to do puck drop.  I was out at the rink after a long time and it really felt very good. Hand sanitization and the wiping everything including the puck with the wipes to make sure I do not get any infection. As I was standing near the commentator’s  box and looking around, I suddenly heard the announcement and then my name.  I heard a loud clapping noise and saw everyone waving to me. Then my dad walked me on the carpet to do the puck drop. It was really fascinating to see that so many people do something for a person they do not even know. I cannot believe that the high school kids at this young age would think of making a difference in one’s life. I felt so special at that moment!

See me in action! by clicking here –> Arjun’s Faceoff

I watched the first period and was impressed to see how well the teams were playing. Then came a reporter who said that he wants to interview me… actually there were a couple of reporters who asked me the questions about my passion for hockey. It was really an awesome experience!  Later that night, my mom asked me how I was feeling about the evening. I said “It was a happy sad day for me. I was happy that everyone was showing so much love to me. But I was sad too that I have not done anything special for anyone.”  My mom said, “Arjun, you are a very special kid who always helps everyone even if you don’t know the person. When you get better than you will get many opportunities to show your gratitude.”!  I wish I can make a difference in someone’s life by showing them that staying positive can help you survive all the tough times.

On Monday, I went to the hospital early morning at 7 AM. It is the hard part to get up early and then eat but I have bad gag reflex first thing in the morning. Sometimes doing the brush is difficult. I start every morning with the nausea medicine and then wait to eat. It sometimes helps. Well in the hospital, my blood reports showed that my counts were stable but still low. I only got my chemo and no transfusions needed.

I was able to come home by afternoon but I did not feel good after I came back. I get lot of jaw pains with Vincristine medicine so eating food is hard to do. I have been feeling very tired and pains in my legs with the feeling that they are turning in. I showed it to my mom. I think it is because my hemoglobin is low.

I am staying home these days as I cannot go to school which is making me crazy. I cannot wait to have the Vgo robot in the school so that I can be with my friends virtually. I spoke about it with my teacher when she came for the home instructions. I was not feeling that great today evening and I just wanted to hug my mom when she came from work. My mom and dad tried to cheer me up but when the teacher came, I started to feel better as we got into the math and science. It actually ended very well and by the night I started to feel more normal. I even played battleship with my brother. Overall, the day was fine.

I cannot believe it is already day 100 on Tuesday, November 27^th. I went to hospital and blood work showed my hemoglobin went up a little bit to 8.3 but my platelet count went down even more to 9000 so I got platelet transfusion only. While I was getting the transfusion, I was playing with the life specialist the board games. Suddenly I started to cough which became really bad in few minutes and then I had a hive near my right eye which was getting bigger. My dad got little worried and the nurses came running. They said I had the allergic reaction so they gave me Benadryl which made me sleepy. After sometime I woke up and threw up but then I felt better. My hive was gone too. I told my dad to ask the teacher to reschedule the home instructions because I did not feel good.

Since my ANC was extremely low, only  320, so I could not go to school. I did have my home instructions on Tuesday and it was great. I got few assignments and the research project which will keep me busy.  Thank God that hockey is on these days as that helps me pass the time too. I want send a big Thank you to my hockey friend and his family for sending me this personalized Golden Knight sweatshirt. It looks so cool and I am very grateful to my friend.

 

I went down to hospital again on Friday to get my blood tested. My hemoglobin was still 8 so I was good. Hurray! No blood transfusion needed. But I still have low ANC of 120 so high risk for infections. I have to be careful. I, ofcourse, stayed home. My science and math teacher came for home instructions on Friday to help me stay upto date to the class lessons. I got a lot of assignments to do which is good. I love math so it is not a problem.  I got almost full marks in my previous assignments. Just the silly mistake otherwise I would have gotten full marks in all of them.

It was good that on Saturday evening my friend, who is also my neighbor, came over for to spend time with me. We watched movies, talked about different things and then played some games. I showed him my superdeeker board and how to play on it. It was a fun evening. Sunday was quiet and more like resting to get prepared for the next Monday for my treatment again.

So after the thanksgiving, we just stayed home for next few days with no visitors which was okay. I am getting used to passing the time at home with my family, my ipad and the books. I practiced some of my hockey skills on the super deeker, learn some dance moves from my brother, watched some movies.

On Monday, I went to the hospital for my routine visit of blood work and my chemo treatment. I found out that both my hemoglobin and the platelets are really low. My HBG was only 7.6 and platelets 18000 will need the transfusion for both. But one of my chemo medicine can cause the severe allergic reaction so I cannot get the transfusion today hence I have to come tomorrow again. I do not like this one medicine,  Pegasparginase,  because it takes 2 hours to get the medicine through IV and then I have to stay another 2 hours under observation to make sure that I do not get the allergic reaction. It took us all day there at the hospital. When I came home then I was so tired and wanted to just lay down. I still have the upset stomach from the medicine which I do not like.

I know now what I want to do when I get older…. Find a medicine which cures this disease in 5 days so that no one has to go through such a long treatment and the side effects. I hope I will be able to do that!

Today is November 22^nd, Thanksgiving day! I was feeling good but I was not really sure if I wanted to go out anywhere. I felt little tired and restless. So instead of going to my aunt’s place, I decided to stay home and celebrate Thanksgiving with my family. My Dad ordered the full Thanksgiving meal for me.

In the afternoon, my dad called “Arjun, come here, I want to show you something”. It was a very big box sent by someone that I do not even know. My brother and I were so thrilled when daddy opened the box and we saw a Superdeker Advance home training system. While dad was setting it up, my brother and I watched the video of the superdeker system to understand how it works. The afternoon went by so quick playing with it with my brother. Man! It made me realize that my arms and hands are weak now as they started to get tired fast. I had to stop many times in between to rest. But I know as I continue to practice every day, it will get better. I want to say a big Thank you to the person who sent me this. It was very thoughtful of him.

In the evening we had the whole spread of the thanksgiving meal and I could not wait to eat it. We really enjoyed the meal as the food was very good. I enjoyed my Pumpkin Pie in the end.

On this day, I would like to thank God for surrounding me with all the wonderful people. I want to thank my family for taking care of me and always there for me. I want to thank my teachers, my school staff, my classmates, my friends, my neighbors, my hockey coaches, hockey team mates,  people who I do not even know but who are supporting me throughout my journey!