Day 93 – 94

I woke up excited in the morning as I knew today is the day I go back to school. It has been 4 weeks without going to school. You know I love school because there is so much to learn and have fun with my friends. I was all ready and sitting on the dining table to eat my breakfast. My bag packed and my mom made sure I had enough snack to eat so that I don’t starve. It was half day so there was no lunch. My mom gave me the water bottle and the barf bag just in case I need it. I quickly swallowed my nausea pills and was ready to go in the car with my dad.

When I reached the school, I first went to the main office to meet my counselor and the nurse. My dad showed the nurse my port with the needle in it. They all seemed to be happy to see me. When I entered the class, all my classmates were surprised to see me. We exchanged “Hellos” and “How are you?” I told them that I was feeling better and happy to come to school. I started with my normal routine of sanitizing the table and chair then my hands. I paid full attention to my class lesson to make sure I understand what is going on in the class.

When I was accessing my locker, my teacher surprised me with a packet. It had lot of handmade cards made by my classmates with inspiring messages.  There was another bundle of cards from the students of a school in Bridgewater. I couldn’t believe everyone spent time making the cards for me.

The time in the school went by so quick. At 1:00 pm, I went to the nurse for my pill and then I came home with my dad. My dad thought I was hyper than when I went to the school in the morning.  When my mom came in the evening, she kept asking me how I was feeling in the school. I told her I felt like a normal kid attending the school. Nothing special.  After the dinner, we all sat down to read the cards. I got little emotional reading them because I was thinking that how much everyone care about me even though they don’t know me well.  I got tired with all the excitement and went to bed early.

Wednesday was same as Tuesday, just not that many “Hi! How are you?” instead it was more like “Good Morning Arjun”. Wednesday was half day too so I came home early. My home nurse has been coming since yesterday to give me my chemo medicine at home. She said that I am looking well. She was impressed that I am so aware of what was happening with me, my medication and my blood count results. She had to wear the mask when she was giving me the medicine into my port because my white blood cells are less than 2.00. The nurse is very nice and always smiling.

While I was enjoying the Devils vs. Montreal hockey game in the night, my mom came down all happy and excited. “Arjun your report card is out.” she said. I asked her “Is it good?” My dad and I looked at it together and I was so thrilled to see that I scored more than 93% (A and A+) in all my subjects.  The comments from my teachers in the report card were very inspiring. All my hard work with the help of my teachers, my parents paid off. I promise that I will continue to work hard to maintain the good scores in my tests and assignments. I fell asleep dreaming about my report card.

Day 92

IMG_20181001_142257301_BURST001 I have been doing okay with my eating and medicines. I have not been throwing up so that feels good. My goal is not to lose any weight and to maintain my weight. On Monday, November 19th, when I went to the hospital for the blood work and the chemo, they checked my weight. I actually gained 2 ounces which was great. That means I am doing the good with my eating. Thanks to my parents and my grandma!

My blood tests results show that my hemoglobin and white blood cells went down and also my ANC. It went from 1230 to 510 which means I have to be little careful now for infections. Doctor told my dad that my hemoglobin may go down lower after this week’s chemo. So if I feel dizzy or tired then I should come on Friday for another blood test to see if I need the blood transfusion. The best news was that I can go to school if I feel okay and also I can go to the Thanksgiving party at my aunt’s place for some time. I just have to stay from people who are sick and also from the crowd. I cannot wait to go to school tomorrow!

Day 89 – 91

So on Thursday night, my dad and I were debating about whether I should go to school or not on Friday because I really wanted to go. But when I woke up in the morning, I found out that school is closed. I was happy and sad at the same time. I spent my day doing some reading, some puzzle building, some playing on my I-pad, some playing knee hockey with my brother because the needle is out of the port. It was a fun day but going to school would have been better. At least with home instructions with my teacher I was able to catch up with what was going on in the class. I even scored good marks on my assignment. That made me very happy. My teacher got me the get well cards made by the students of his class. It made me very excited to read all the loving messages from the classmates I know very little. I even got the card from my school nurse in the mail.

IMG_20181118_102028389Finally on Saturday, I was able to finish my 1000 piece hockey puzzle with some help from my mom and even my little brother. We both put the final pieces together. My mom wants to frame it and put it in my room. We spent the weekend at home, trying to find things to do at home to keep ourselves busy. My brother and I played with the robot with coding on the i-pad. It was a lot of fun. My parents make sure that I study everyday a little and finish all the assignments and the homework.

Day 88

IMG_20181115_145339492On Thursday, I enjoyed the first snow of the winter but I could not go outside. After my finished morning class work that my teachers gave me my mom let me open the lego that my aunt gave me. I could not believe when I realized it is Lego Boost. This is app based Lego. My brother was the helper and I built the Lego robot in 4 hours. I had to rest in between as I get the cramps in my legs and hands some times. Also I get tired too sitting for long time so I have to lie down to get my energy back. The robot is cool.  It can even hold hockey stick and hit the ball as I control the app. I can do the coding and make it do different things. I showed how it worked to my grandma and she was impressed.

So some one cleaned the heavy snow off of our driveway to help us out. My parents and I want to thank the person who did it for us!

At around 8 pm my nurse came to give me the chemo. We were talking about the snow. IMG_20181115_182149985_BURST000_COVER_TOPShe said that we cleaned our driveway pretty good. My dad and I were surprised. We never went outside to clean the driveway. My mom heard what we were talking about and she was surprised too. My brother and my mom went outside to see and there is was – a clean driveway! We don’t even know who did that for us. We tried to ask from our neighbors but they said that they also noticed that our driveway was clean. So some one cleaned the heavy snow off of our driveway to help us out. My parents and I want to thank the person who did it for us!

Finally the needle is out of my port today and I will be able to sleep better. I hope the doctor allows me to go to school soon. Hope this weather gets better too so that it is safe for me to go to school again.

Day 86 – 87

Next morning at 7 AM my mom took my IV off but the needle in the port still had to stay because i will get the chemo every day until Thursday at home. I was feeling a little better and was able to walk down the steps with my dad. After I took my nausea medicine, I was able to eat a little bit too. It was getting better every day and by Wednesday I was able to walk around, eat well without throwing up. My teacher came on Tuesday for home instructions. First time I felt a little tired and my teacher was super nice. He told me that I can finish the work if I am upto it and also told me that we can take a break if I was getting tired. After he left, I did not feel good and threw up again but this time it felt better.  The needle in my port is so uncomfortable. It is so hard to sleep with it. One morning I got such a bad cramp in the calf that I screamed and my mom and dad came running. My dad stayed with me and massaged my leg to make it better.

I was surprised to see so many messages on my blog from students of a school in IMG_20181111_201119768Bridgewater. I do not know how they found out but it was good to see so many inspiring messages. I tried to respond to them too. I cannot go to school because I still have the needle attached to my port and also because of my nausea. I passed my time by almost finishing my hockey puzzle, finishing some of the class work that my teacher told me to do. I did some face time with my friend to know about what is going on in the class. It was so much fun. I miss joking around and doing silly things with my friends.

Day 85

I had to wake up so early on Monday, November 12th, to go to the hospital because if my blood counts were still low then I needed to get the bone marrow aspiration. I know everyone was praying in the house for my blood work to be good. We waited and waited for the results after the nurse took the blood from my port. Suddenly I saw the  Doctor entering in the room with a big smile and I knew he has some good news. He said that my ANC is went up from 460 last week to 1230. So they were starting my chemotherapy again. Hurray!! My dad called my mom right away and I could hear my mom getting excited to hear the good news.

But I knew that it is now going to be a long day. I had to wait for the medication to be ready. They had to test my urine also which did not come out clear the first time so I had to wait some more.  With one of the medicine, I have to get IV fluids for 24 hours so I was connected to the IV fluids right away. It was so uncomfortable to be connected to the pole and walk around in the clinic but I managed. I passed some of my time by watching my I pad and some while playing the board games with the child life specialist. I played for 2 hours and beat them in the game pretty good. I was there from 8 AM to 4:45 pm.  I was happy that I did not have to stay in the hospital in the night time.

IMG_20181112_214026036I was able to come home. When I reached home I did not feel too good. I was very tired, lot of headache and felt very sleepy. My mom sat with me to massage my head. Home nurse came to hook me back on the IV fluid at home. First she gave the training to my mom and dad and then I had to go there to get the IV fluids started. At home, it was the back pack and not the pole. Someone had to carry it because it was very heavy and I had no energy. I threw up 4 times in 2 hours and it did not feel good. I had to take the medicine 2 times because all the medicine came out with the vomit. My dad had to carry me up the steps to go the bedroom. I could not eat anything that night. I just wanted to lie down and sleep. Even though I was happy to get my chemotherapy started, I did not like my day today.

Day 80 – 84

IMG_20181107_194555983So we celebrated Diwali with lot of nice decorations and fun! I got my knee hockey and we played that till late in the night. I was reminded every few minutes by my mom to watch for my port so that the ball does not hit me. These days I get the weird pains randomly in my shin or the big toes. It makes it so hard to kneel down to play hockey sometimes.

After Diwali was over on Wednesday, Nov 7th, I was all excited to go for my blood work on Thursday because I knew my ANC would be up from Monday. But it did not happen. It actually went down more than Monday. My dad looked worried and called my mom. I saw them talking to the doctor on the phone. When I came home then my mom looked very sad. I told mom, “Don’t worry mom, God has a plan for me.” My mom smiled and asked me “ Okay so what is the plan?” I told her “That I do not know yet but I know there is definitely a plan” I started laughing then which made everyone laugh.

I have been feeling great actually for 2-3 days because I have not received the chemotherapy for almost 2 weeks. I have been hungry. I have a lot of energy. I even spent some time with my little cousins on Saturday. I was running around with the 1 yr old cousin. Man! That felt so good.  My mom and I have made great progress in the puzzle but it is sooo hard with such tiny pieces. I know I will finish it soon. My brother is helping me too! I have to go back on Monday for the blood test and if my count is not high then they will do bone marrow aspiration. I hope they go up so that I do not have to stay hungry for a long long time. Also it hurts in my back afterwards.  My mom said I will be just fine on Monday and things will get better soon!

Day 74 – 79

IMG_20181103_110332144It took me few days to get over all the fun that I had on Halloween.  We would look at the pictures on my mom’s phone and on Facebook and have lot of fun. I spent the time looking at the cards and the notes left by people along with the balloons. It was very inspiring to read all of them. I even received few gift from my aunt, my mom’s friend and even from someone that I do not even know. I want to thank everyone for thinking about me.  I am opening one at a time to keep me busy for long time.

Since I am still not able to go to school due to my blood counts being low and lot of kids with fever in school, the 1000 piece puzzle of hockey would definitely keep me and my mom busy! My teachers have been very helpful and coming to keep me upto date with my class work and the assignments.  The only thing I am missing now is Spanish and the violin classes. Spanish is so hard to do it on my own because I do not understand it. When I feel a little better then maybe I can get classes for violin also. I was so excited about the musical instrument but now I cannot even learn it because I am not going to school.

I have been feeling okay for last few days and eating the best I can after my early morning medicine. I had to go on Thursday for the blood test and then on Monday. It has been disappointing because my ANC has been decreasing instead of increasing. I cannot start my chemotherapy because of that.  But I am not worrying about it since we are preparing for Diwali, the Indian festival. I asked my parents to get me knee hockey set so that I can still play hockey with my brother. I cannot wait to get my gift to have lot of fun with my brother !

Day 73 – What a Halloween!!

IMG_20181031_171622024_HDRI do not know how to begin describing my Halloween day. I woke up with the feeling of little disappointment thinking what I am going to do today. I cannot go to school. I cannot go to see my brother’s Halloween parade. But then I heard my dad calling me to come down fast and see who is out there in the front yard. I saw a man with the dog who, my dad told me, was a police officer with the K9 dog. They were leaving a balloon with the note. I asked my dad “What is going on?” He said “I don’t know”. I looked outside few minutes later and there were few more balloons in my yard. Then I definitely knew that something is going on. My dad laughed and told me “This is for you Arjun. Steps together has organized this event for you to show their support and make your Halloween a special one.” I could not believe it. One after another balloons kept coming.  Later I saw the police officers coming with the balloons and a note. It was so nice to talk to them. I even got to take a IMG_20181031_103032136picture with them. The best part was when they said that I have an open invitation to get the grand tour of the precinct once I get better. Hurray! It will be so cool. I think I am going to take my brother with me.

Balloons did not stop coming. By noon, there were a lot of cars and lot of balloons. I was running back and forth from my front door to laundry room to see who came next. It was amazing! My grand uncle came especially from far away town to participate in the event. He was surprised to see so many balloons just for me. I met few more police officers in the afternoon with the balloons. They were sooo nice! IMG_20181031_134454735_HDRThey let me see the police car from inside, let me blow all the sirens and even let me pull over my friend with the megaphone. It was soooo cool! I got to take a picture with them with the police cars.

In the evening when my mom came, there were so many cars that she had to wait to turn and get into the drive way. She was shocked to see so many people and the balloons in the yard. I was allowed to wear Halloween costume and go outside in the yard with my parents for some time because the weather was so good.  I met some of my hockey friends, neighbors, my 5th grade teacher, school staff. I want to thank my classmates  especially the 5G team for sending out the balloons for me. Everyone was super nice and cheering for me. People kept coming and coming till late in the evening. I almost got lostFB_IMG_1541206097128 in the balloons so you can imagine how many balloons we had on our front yard.  I cannot believe so many people came just for me on this day. I even heard someone saying that the dollar store ran out of balloons and the helium gas…that is unbelievable!!

This is my best Halloween ever! I got so much love and support from everyone. I promise I will try my best to fight Leukemia and stay positive throughout the treatment!

Day 69 – 72

IMG_20181030_195656213So I am still not going to the school! I am not happy about it but I can understand what my parents and the doctor is trying to do by keeping me home and protected. I am trying my best to keep myself up to date with the course work but it is hard when you are not in the class. 5th grade is supposed be so exciting since it has many activities, clubs, music instrument and science experiments but I am missing out on everything. I will be so lost when I go to school now since everyone will be so ahead of me. Hmm..that does not make me happy.

I went to hospital on Monday and found out that my blood count is still low so they cannot start the second month of my chemo. My ANC is only 460 and it needs to be 750 for them to start it. I did not feel good that day and threw up in the hospital. Blood work showed my glucose was low so they had to give me IV glucose and dietitian told me to make sure to eat well in the morning. They also gave me some different medication to take first thing in the morning to make me feel better. Now I have to go again to hospital on Thursday to get checked up for my blood work to start the treatment.

Last evening, my mom and I were looking into the book called Wonders of the world. It was so much fun!! We were trying to decide when will be the best time to make the trips to explore them. We want my treatment to be in maintenance phase and my little brother to be little older so that we can really enjoy them. I have been feeling little better last couple days so I am able to enjoy things. The best part is I get to sleep with daddy sometimes when I am not feeling good. He is always there for me!

One of my teacher came home today to give me the home instructions which was so cool! I feel I learnt a lot in math and science. We are trying to get the robot thing approved in school so I can virtually participate in the class but it is taking too long. My other teacher is coming on Thursday and I cannot wait to learn from him.

I am going to miss Halloween in my new school tomorrow…I am little sad about it. I am not sure if I will be allowed to go out for trick or treating. Well I will be handing out the candies then!!