Today , September  17^th , I woke up all excited and after eating my huge breakfast, I waited for the school bus. There it came and before I got in my dad talked to the bus driver about my designated seat, having the buddy with me and getting off of the bus first before the whole crowd of students. It was an experience going in the bus and I was not sure how I felt about it. My counselor was waiting for me and my buddy and I were allowed to go into the class first so that I can be safe.

After the school was done, I was waiting near locker for someone to walk with me to the bus. This new teacher came who walked with me to the office. Today was the first day that I had to carry my back pack with my chrome book and other folders. I never thought that carrying this bag will be so tough for me. It slowed me down while walking the hallways. My school nurse saw me and said that I should not be even carrying that by myself.  I did not feel too good about it that I could not do such simple thing.

After I came home, my mom and I talked about my ride in detail as my mom has to know everything all the time. When she heard about my backpack then she said that it’s okay for me to ask for help. We then talked with my dad about how I really feel about going in school bus. My mom really does not want me to take bus and my dad decided that he will drop me every day to make it easier for me. I don’t know but my mom knew before me that I will not enjoy the bus ride.  Thank God! My dad is there to help me out.

Today was a good day as I woke up fresh with long hour of sleep after many days. Since my grandma is here so I was able to spend my time with her explaining her how it all happened and what safety precautions she has to take with me.

Most interesting part of the day was the shopping for the shoes. I went out with my parents and my little brother to the mall and then straight to eat something first.  After that, we got few pair of shoes for my brother and I within 25 minutes. Then started my restlessness for food again. We found few places to eat but my mom was not happy with some of them as they were not very clean but I just wanted to eat those noodles and dumplings. I was driving my parents crazy with my cravings. So in the entire 2 hour period we were out, we only spent 25 mins for shoe shopping and rest of the time on food within the mall and stopping on the way to home.  This is making me very agitated and cranky too and I may be a little disrespectful to my parents at times. I make sure I apologize to them.

I still get these back pains with all this weight in my belly so I have to daily exercises with my mom as it is so hard to sleep now. I am using 2 pillows to keep myself raised up so that I can breathe better while sleeping. I like the school days better as I get tired at the end of the day so I sleep faster.

I cannot wait to try the school bus tomorrow! I am both excited and nervous about riding the bus. Will let you know how it went.

I have been regularly going to school now for a week and I have developed the system of cleaning my seat and using sanitizer on a regular basis. I know this will keep me safe as much as possible. School is fun and I have started making some new friends. I can’t wait for the actual math lessons to start because right now it is very boring. I might be able to go on the school bus from Monday. I have to see how I will like it.

I am thankful that I have no more jaw pains and the back pains now but recently have developed the cramps in my hands as I am eating or in my upper back. I have to stop eating and stretch my hands out or at times my mom has to feed me. For my back, I try to do the twisting exercises with the back with my mom which makes me feel better.

I am gaining a lot of weight on my face and my belly right now. It feels weird when I look at myself in the mirror as I have very chubby cheeks these days. I have gained 6 pounds in 3 weeks now as I am eating like a maniac and asking for food at odd hours. My mom sometimes has to make food at 10 pm at night or my dad would have to go out to get me some fresh pretzels. Everyone is doing so much for me.

 

I even get to go out in public this Saturday and meet other people. But I was able to stay for short time at my neighbor’s place where my friends were also there. Everyone was playing outside but I had to come back home because I cannot go in sun at this time and also too much exposure is not good. Thank God my grandma came today from India so I will have something to keep me entertained at home. I told her how it all happened and what I am going through. She was a little sad but I told her, as my dad says, everything will get better with time as long as we take the right steps. I told her that I am handling this disease pretty well.

Early morning of September 13^th, my dad and I took off to go to the clinic for the treatment. We were so quiet that my mom and my brother did not even wake up because we left at 5:30 in the morning. We did hit some traffic as we reached the city area but it was not too bad going there.

We started off with blood work and then waited for the results. The nurse came with some good results today and I was very excited. When she said that my ANC went from 250 to 840 and I am at low risk for infection then I said to her “Wow! My body is working super hard to get me better fast”. My platelets are in normal range now and my hemoglobin is holding up good on its own that means I do not need any transfusion. Wohoo!!

While we were waiting for the chemo medication to come and start on IVs, I was thinking of the things to eat. I then decided that I want to eat the Mac n cheese from Applebees. I couldn’t wait to get over with the IVs and go to eat. My doctor told my dad that if I want then I can skate but should not play any contact sport at this time so that I do not get hit on my port.

After we got done, my dad had to find the Applebees in the city area and somehow manage to get there as quick as he can so that I could eat. It was a rough ride home as my stomach started to hurt after chemo and I needed to find a nearest and clean place to use the restroom. It was tough for my dad to drive and manage me. We were able to find a place and after the quick stop we finally reached home and I could relax. My mom was so happy to see my results and also to know that I will be able to skip the Monday visit to the clinic for the bloodwork. You know what that means? …It means I will be able to go to school on Monday. It was a tiring day but with happy ending.

Hey guys !…Here I am again awake at odd hours of the night craving for food and getting excited to go to school and learn new things. I even helped my little brother to wake up and get ready since he goes to school before me. My Dad is dropping me to school and we are still trying to figure out what time works the best to avoid the crowded hallways.

My counselor and my teachers are super nice and has already made arrangements for me in the class. I make sure I wipe my seat and table where ever I go. I told my mom that we will need lots and lots of wipes if I continue to do that. My mom said that she already has a huge order of wipes and sanitizer in place. My mom and dad are working so hard to make me safe in the school and also making sure I am able to keep up with my teammates in 5^th grade. I feel so special that everyone is doing so much for me. I told my mom I feel very ready to take up any challenge, I mean any challenge in school, at home, in life!

What I miss most is playing hockey in the basement with my brother and at the rink but I know, as my mom said, I can never forget to skate, I will catch up with my team in no time with lot of hard work.

I think now I should stop writing and eating and go to sleep so that I can wake up again at 5:00 am to go for my treatment.

Here I am awake at 1 am then 2 am and finally at 4 am! Ahh! Time to walk up! You must be wondering why I am so happy to wake up at 4 am, right?  Well today I have to go to the hospital again so they could access my port for the weekly blood work and check if there is any problem.

These days I am the hungriest maniac on earth because of the medication. I forced my dad to wake up but a total failure – it actually took me 45 mins to finally get him up and out of the bed. I got ready fast dad and I headed out to the DD. We got some hot breakfast and then headed to the clinic with my mom and my brother. It is the long rides which make my butt hurt so much otherwise I do not mind going to the clinic.

After we reached, the nurse took my vitals and then asked me to lay down on the table. Everybody had to wear the mask as she was going to put the needle in my port to get the blood out. Nurse was so surprised to see that I can handle it while looking at it. She said I am one brave boy. I had a big smile on my face. Then we waited for the Doctor to come and discuss with my parents about how I am doing.

My doctor is so nice and she is always smiling. Doctor had some good things to say that means my health is recovering super well. My platelet counts are up, my hemoglobin is holding up good but my ANC is low which is risk for infection but my doctor said good hand washing and wiping my sitting area can prevent the risk. She actually allowed me to go out to eat if I want to and to continue to go to school. I was the happiest person in the world! I heard the doctor also saying that the genetic testing looks like is in my favor. We will find out more about it in couple of weeks. I got the flu shot without any problem making my nurse super happy.

We had to drive back again 1 hour and 30 mins to reach home which I do not like. So we stopped at a restaurant in Princeton to eat some dumplings which I was craving for many days. Yummy! My mom said we have to limit going out like once in 2 weeks to be safe. I agreed with her.

Rest of the day, I just spent reading the books and planning for my next school day. I feel so thankful to my parents for all the things they are doing for me and my brother to go for such long rides with me and hang around without complaining. Man! He is so mature and such a good brother! I love my parents and my brother so much!

One of my Hockey team player/friend’s Mom has initiated a fundraising campaign for me and Leukemia research. – Thank you.

GoFundMe – Click here

 

Hockey Coach & my friend’s Dad has initiated the fundraising activities in association with Steps Together – Thank you.

Steps Together – Click here

Here is the message – “Arjun’s name is added to the walk/run registration so anyone who signs up at www.steps-together.org/teamawesome can opt to run or walk in his honor”

I was kind of happy that I had few days off after first day of school to get everything arranged and prepare myself for the busy schedule. I have been having some hard time taking my pills for few days and my jaw hurts. My mom said this is the side effect of my chemo medication. To distract myself, I started with my huge Ferris wheel Lego today and my little brother was my helper.

I was doing fine until the late afternoon hours when I started to have the pain in my back which made me very angry. It got really bad in the night time and I had to ask my dad to massage my back and press gently on my back. We tried some yoga position to digest my food. All this helped little bit but then it made me so uncomfortable that I started to cry. My parents tried to keep me entertained so that I can be distracted. My mom took my temperature and offered me the Tylenol but I wanted to try to sleep rather than taking the medicine. I could see my mom was very sad and I think I heard her cry little too. I told her that I will be fine after I sleep.  I think my brother started to feel lonely since my dad was busy with me so I told daddy to go to his room and I will try to sleep myself. I finally fell asleep and was better in the morning.

We finally built it ..a 2400 piece lego in 2 days…Awesome !!

Next day was better and I went straight to my legos with my brother. We finally built it ..a 2400 piece lego in 2 days…Awesome !!. I want to thank my aunt again for such an amazing lego set. After my mom saw it, she was amazed how I finished it in 2 days. Her response was “No more legos for you for some time. You are building them too fast.” We all started to laugh. I have to sleep early today because I am going to the CHOP clinic tomorrow at 5:45 am for the treatment. I hope I have good results like last time that would make my parents so happy and I will be able to attend the school regularly!

First day of School (for me)

September 7^th morning, I woke up. “Come on” I said with a rough start. I got barely any hours of sleep thinking all night about today, the First day of School (for me). I dreamt of this moment a thousand times.

I stretched, brushed my teeth and headed downstairs where my mom was ready with all my supplies and the instructions. I first finished eating because these days that is the most important thing for me otherwise I become so cranky. Then we discussed how to use the wipes, sanitizer, school supplies, snacks and what to say to the teachers. I could see my mom was nervous but I was full of excitement.

I was surprised by my bus driver that she is a cancer survivor too!

After eating my morning pills, I headed straight to the bus stop to meet the school bus driver even though I was riding with my dad to school. My bus driver was older and very nice. I was surprised by my bus driver that she is a cancer survivor too! I found little relief hearing that. Few minutes later, my dad and I jumped into the car to head to school.

I met the counselor and the school nurse there first who then took me to the class. Little confusion in the beginning about my homeroom and after we cleared that out, we met the teachers. They were extremely nice. I unpacked my wipes and cleaned my chair and table as my mom told me to and kept my sanitizer handy.

It was overwhelming first to know the routine of the classes, move around between the classes and I felt a little lost first. My locker also jammed, and I could not find any counselor or the teacher around. Thank God! One of my friend stayed behind for me and helped me out. He also stayed with me at lunch time otherwise I would be sitting alone since my seat is all the way at the end for my safety…i am so grateful to him.

Since I could not do the gym, I had to sit down on the bleachers where I met one of the gym teacher who told me that her son had cancer too! I smiled because at least she knows what I am going through. Rest of the day was sometimes confusing and tiring but I think I managed fine the whole day. When I came back, I was a little tired and what made me more tired was explaining my dad how was school. My mom was so worried about me and she said that she was happy to see me enjoy my first day. I was happy today and I liked the school. I think I will do great in school.  I slept early and well in the night that day as it was a long day!

Today, September 6^th, I had to wake up at 5:15 AM to go to the clinic for the 3^rd chemotherapy treatment because my appointment was at 8 AM. Thank God, I am an early riser! My dad and I hopped into the car while everyone was sleeping and started driving. We reached there just in time. When I stood up on the scale I said out loud “ Oh no ! I gained 2 pounds in one week.” My dad and the nurse started laughing.

Here goes again, more blood work but I was happy this time. You know why? Because if my blood counts were good then I would be able to attend the school on Friday. We waited and waited and then it came back. All my electrolytes are good and other blood things are good too! My nurse was happy to see the results and said that there is no reason why I cannot go to school. I just have to make sure I wash my hands all the time and clean the area where I sit. Hurray! ARIS here I come.

My Dad suddenly was very happy while he was talking to my mom on the phone. I asked “What happened Daddy?” He responded “Nurse did not see any Blasts cells in the blood report. So it is great news.” I am not sure what it really means but I am happy that my Dad is so happy. After getting my treatment, we drove back to come home on time for my little brother before he is back from school. The ride was so tiring and long! I said to my dad that if we were driving in Ford Mustang then it would have been an exciting ride!

Later in the day, I received a letter and package. I was just shocked to see what I found in the letter. Oh my God! One of my hockey friend gave me one of his precious hockey card! I told my dad who does not understand how rare this card is. I am so thankful to my friend for doing this.

I also received fun things from my teachers at my old school! I cannot believe they did this for me. I hope I will able to do this for someone one day. Alright I am going to sleep now as I really need to rest to be ready for school tomorrow!