Day 65 – 68

Today October 25th, is the first day in last four days that I was able to actually feel little better and be able to eat without throwing up.

Monday when I went to the hospital, I was told that my blood counts are extremely low. My ANC is only 100 which put me at very high risk of infection.  Doctor and the nurse said to my Dad to be very careful and keep me protected.  They even gave a new medication to take one day so that my blood counts do not go down any further. My dad said to me “ Arjun, you cannot go to school this week. Doctor said you have to stay away from the crowd to be safe.” I was really upset about it because I am going to miss my presentation and the class lessons. It gets so boring at home. No friends to talk to or play with. But when I came home after the chemo treatment that day, I did not feel very good. My stomach was hurting, lot of nausea and gas which made me so uncomfortable that in one way I was happy that I did not go to school. I think the doctor already knew how I am going to feel that is why he told me to stay home.

I feel very tired and cold most of the time and my mom said that it is because my hemoglobin is low. I hope my bone marrow makes the good blood cells fast so that I can start feeling better soon.

My friend did the face time with me to tell me what is going on in the class and I am trying to do my best to keep up with the class work as much as I understand. I hope my teachers come soon for home instructions so that I can be up to date.

Day 53 – 64

IMG-20181015-WA0002It has been crazy few days. One day I am feeling normal and other days I feel so much nausea and headache all day. First of all, It has been so hard to decide what to eat and when the food comes in front of me then I just don’t feel like eating it. It is making my mom very worried and I am trying my best to eat as much as I can so that I do not lose weight. I am so scared about the feeding tube to be put in if I do not eat that I force myself to eat sometimes.

I have to go to the hospital many times and on last Monday I was there for 10 hours. It is so tiring sometimes. This makes me behind in my school work. It is so hard to concentrate on my school work sometimes but I am trying my best. I didn’t do well in one of my math test because my head was hurting so bad so I asked my teacher that I want to take the test again but they cannot give that to me. I feel really sad about it. I hope I do better in other tests.

One day I made my mom little sad. In the school, when we were talking about the hoops for heart, I was thinking that since my blood count is low then can I get some heart problem? I came home and asked my mom that if cancer can cause me to have heart problem and can I die if it cannot be treated. My mom got really sad told me to never think or talk like that. I spoke to her later and told her that I am fine and I did not mean to ask the question that way. I promised her that I will not talk about it like this.

All the nurses and the doctors are nice.  My doctor is also a hockey player and he still plays. He even scored a goal in the last game and he told me that he dedicated the goal to me. That’s was so cool to hear that from the doctor. It makes me feel how much I miss playing hockey. Sometimes I do not feel like watching the games on TV because it reminds me what I am missing. It is so boring now in the evening and on weekends because I cannot go to hockey practices or go anywhere. I just wish this all could go away fast.

Day 47- 52

IMG-20181010-WA0005It has been long time since I wrote anything in my blog. You know why? Because it has not been a fun treatment phase this time. I have not been feeling that great due to my nausea, bad taste in my mouth, discomfort in my belly and not being able to eat well. It has been bumpy few days with few random cries, feeling of sadness because I do not like this feeling of being hungry but not able to eat. One day in school at lunch time, I had such a strong feeling to throw up that my friend called the nurse and I had to go and lay down in the nurse’s room till my dad came to pick me up. My mom tries hard in the night time, with lot of distractions, to make sure I eat and drink the high protein shakes so that my weight maintains. This is what the dietitian said. My cheeks are getting smaller and so is my belly. I think I have lost lot of hair too already but still not bald..haha!

I have been going to the treatment every day from Monday to today and will go tomorrow too. Good part is at least I am able to attend half a day of school. I heard the doctor say to my dad that they generally do not allow the kids with cancer to go to school but since CHOP allowed me to go then they will follow the same. My blood counts should be in safe range for me to go to school. This Monday, they went down after the last week treatment but still in safe range. My dad has been working hard every day starting from dropping me in the morning to school and then, in the afternoon, take me for the treatment, and then bringing me back.

Despite all that, I have few good things to share like I am getting home instructions from my teachers which are helping me to catch up with the lessons. I have been doing well in my tests so far and getting good marks. My teachers are super nice and have given me the test later or early if I am not present that day. I want to prove to them and to my parents that I can still do good in 5th grade.  I had a great picture day while I still have my hair. It would have not looked good with the hat on. It can be a good memory for 5th grade now. I am maintaining my weight until now, and I still got the muscles and fat belly to show off !

Day 43 – 46

IMG_20181001_142326149My second phase of chemo started on Monday, October 1st at Morristown Medical Center. It was very different than at CHOP but it was nice. I had to stay hungry after midnight. We reached hospital at 8:30 am. My port was having some trouble getting the blood out but it finally came. I waited for my results for an hour and they came out great. My hemoglobin was 10.3 and my platelets 409,000 which were great. I was then taken for anesthesia in the room for another spinal tap. It took me 1 hour to wake up after anesthesia and I was so dizzy and lot of nausea. I was not able to stand by myself so my parents had to hold me to walk. I had to then wait forever for the lunch to come so I could eat. I had not eaten for 13 hours already. The nurse was then trying to get to my port again to give me the chemo medication but my port was not working right. We tried to stand, lean to the side, raising the arms, moving in the bed but nothing was working. My mom was worried. They had to give me a medication to fix my port with an injection and then I had to wait for another hour to get my chemo. I then found out that I have to stay overnight in the hospital for IV fluids because one of the medication makes the bladder bad so I had to go to bathroom a lot. The room was nice and the nurses were nice. Also the doctor and the nurses were surprised to see how good I looked and I have been going to the school during the first phase.

Doctor told me with all the medication that I will take this month, will make me nauseous, feel tired with flu like symptom and will lose my hair a lot. I want to get my head shaved but my mom does not want to get it done yet so I will wait for her to be ready. In the morning, I had to wait for the nurse to give me my medication so that I could go home. I am taking one medication by mouth and 3-4 through my port different times throughout the month. They told me that I have to come every day for the shot until Thursday to the hospital. I did not like the idea because I will have to miss so much school.  The nurse said I have to take the medicine for nausea every 6 hours to make sure I do not get sick. I thought I was doing pretty good. I felt strong enough to go to school but they said I can go on Thursday for half a day. That did not make me happy because there is nothing to do at home all day.

I have been going back and forth to the hospital until today. I got some cool things from the treasure chest for me and one day for my brother. I really miss playing knee hockey with him and other wild stuff.

The drive is much better here but I still miss chop. I will have to go to hospital again next week for 4 days. Another spinal tap on Monday and I will have to stay hungry again all night. Hmm..i am okay with it now since I stopped the steroids.

Day 41 – 42

September 29th started off me with my dad and my grandma at home because my mom and my little brother went to my cousin’s home last night. It was cousin’s birthday party at bowling alley. I could go to the party but only at the end. It made me a little sad as I could not do much of bowling and other fun stuff. What made me happy was that they waited for me for the cake cutting and everyone was so careful around me.  My dad cleaned the bowling balls each time and helped me carry it so that I can just roll it few times for fun. I got to go to my cousin’s house later and play with my little cousins for some time. That was fun!

Sunday was such a good day! I am so thankful to all the people who ran 10K for me today! Thank you all for your support for me! It makes me feel so positive. I wish I could be there but I cannot go out in crowded areas and in direct sunlight.  I got to go out in the yard in the evening and play with my neighbor and friend some soccer and Nerf gun. It was after a long time that I played outside and ran a little bit. My mom was watching it the whole time and reminding me to slow down and to be careful.

Tomorrow is going to be the long day for me. I have to be empty stomach again after midnight and new phase of therapy is going to start in Morristown medical center.

Day 37 – 40

I know you all have been waiting to know my results as I was too few days ago. On Tuesday, my dad picked me up from the school and he seemed little quiet. When I asked him “What happened Daddy? Did I get my results?” He said “Yes we got the results and it is not what we expected. So you will have to have one more month of therapy added to your long therapy”. Normally the MRD should be less than 0.01% to be called negative but mine is 0.015% which makes me MRD positive. I said to my dad “ Okay. I am not too happy to hear this but it does not really concern me either. It happens sometimes and we will have to deal with it like the doctor said.” My dad said the he knew I would be alright that is why he told me. Dad also told me that my mom was very sad. So I called her over the phone while driving back home. I could hear my mom crying slowly so that I do not hear her. I told my mom that it is going to be fine; it’s just one more month. My mom said that she knows that I am stronger than her and I will handle it. My mom said that the doctors told her to be very hopeful as it is very very very slightly higher than the normal and by the end of next 2 months of therapy so it should get less than 0.01%.

On September 26th, I had to leave early from school to go meet the team of doctors and nurses at Morristown Medical Center and we are trying to move from CHOP to Morristown now.  It is much closer than the other hospital so it should get easier to go to my treatments. It is much smaller also than CHOP and much older looking but everyone was very nice there. All the nurses and the doctors are nice. I have to start going for the next treatments from Mondays now. I still have the cough so the doctor checked me out and said that my lungs are clear. I got to go to the Treasure chest in the end where they have lot and lot of stuff. It took me 15 minutes to figure out what to get from there. It is going to be interesting every time I go as my mom said I will only have 5 minutes to choose. It took us 50 minutes to come back home which was so much better.

I was able to go to school rest of the days and had fun with my friends and learning. I hope it continues. I am still doing well with my eating even after my steroids are done. I am losing the extra chubbiness in my cheeks slowly which is good because the picture day is coming!

Day 36

September 24th was an exciting day!  I was waiting for the results to come back but as my parents told me we have not gotten them yet. Even though I woke up with the stuffy nose and a little cough, I got to go to school.  In school my counselor came to me to tell me that my mom asked her to remind me to make an extra effort to drink a lot of water to keep the cough soft. My teachers were paying close attention to my cough as well.

IMG_20180924_203436693In the evening I got to go to get my musical instrument with my dad. I am learning violin this year. I was so excited for my first class on Tuesday. The other exciting thing that happened that made me sooo happy was when one of my coach and his son who is also my classmate and my hockey mate came to visit me. They brought something that made me feel so special.  They gave me a long long hockey stick that my team and the coaches signed. That was so nice of them and a good memory for me forever. The other thing that totally surprised me was when I saw a signed hat from another hockey team with whom I have never even played except one of the players. It was such a nice gesture. I really want to thank my teammates and all my hockey friends for doing all this for me.  All this help me to get back to ice soon with full force.

I also found out that people have signed up to run for me in Steps Together 10K run to support me which is so amazing. I just hope that one day I will be able to do something special for someone else like this.

Now I just hope I get the good result from my test and this will all be good and done fast.

Day 33 – 35

It was tough couple of days for me after the procedure but I think I managed to handle them the best I could. Walking was the hardest to do but it got better after Friday. I could not go to school on Friday because of the pain and dizziness. I think it was a good thing because I had a nose bleed that day. My dad gave me some ice and then called my mom and the nurse right away to find out what to do next. Nurse said that as long as blood is not gushing out of my nose I should be fine with just the ice. It stopped after some time..Thank god!

I felt better over the weekend and had some good time with the family and actually played with my brother the silly games that I have not played in quite some time. My parents kept reminding me to be careful and my little brother was so good with me.

It was a quiet weekend with lots of rest and fun with my cousins. My parents had to remind me not to get too close to them and not lift my little cousin. It is tough to remember all that and not be normal but I guess I have to do it for some time.  All my steroids are done but to my surprise I am still eating well. My mom is happy and my goal is to gain at least 10 pounds total before the end of this month.  I have already gained 8 pounds until today.

I am just so happy that I will be able to go to school for the whole week next week since I do not have to go for chemotherapy for next 10 days.

Day 32 – First Phase – Induction Chemo Completed

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Today was the big day as I finish my first phase of chemotherapy which is called Induction. I was getting the spinal tap with the chemotherapy and the bone marrow aspiration. My mom told me that it is done to check if I am in remission which means to check if all the bad cells are killed and the good cells are being produced. I heard the doctor say that we will get the results on Monday and that will tell us how my next phase of therapy is going to be.

I had to stay without the food after 11 pm last night which, you know, is very hard for me to handle now. We were in the car at 5:45 AM to head to CHOP clinic. I had thought many times in my mind, I wish I was going to school then I would be able to get distracted and be able to eat later. We reached at the clinic and started off with my routine blood work by accessing my port. Today it was tough for the nurse to get the blood out at first from my port so she had to take a huge syringe of saline and put it though my port while the other nurse was moving my bed up and down, my arm up and down and there it was, a big gush of blood coming out. Pheew !! Thank god my port was doing fine. My mom got worried about it but I could see her relieved. The results came out good with my ANC going up to 1540 which means that I am at a lower risk for infection. It also means that I will be able to go to school, my cousins can visit me and I can attend a birthday party for sometime. Hurray !!

As I was day dreaming about the food and all the nurses were having the good time IMG_20180920_112309176discussing my food choices at 9 Am in the morning, the doctor came to take me for the anesthesia for the procedure. I was taken into the other room for the procedure and my parents had to wait outside. After 30 mins, I came out and started to wake up slowly. Let me tell you..it was not a good feeling. I was dizzy, with a headache and pain in the hip bone. I could not turn on my own and nurse helped me. I had to wait for an hour with the pain medication before we could leave the clinic for long ride home. When we reached home, it was tough to come out of the car and step down. My dad had to help me climb the steps and move around for a while.

Until night time, I was in pain in my hip bone, headache and some dizziness. My mom gave me a strong pain medication to make me feel better.

I hope I get good results on Monday from my bone marrow aspiration so that I can be cured fast and have a normal life!

Day 30 – 31

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These were usual days with nothing significant happened. I enjoyed the school, reading, watching movies and the most important thing the food. Man ! I got some fat cheeks now. My mom and my brother love to take pictures of my chubby cheeks and my fat belly.

I receive so many good wishes and thoughts from lot of adults, my friends and my school mates who make me feel so good. One of my 5th grade classmates even said that she will dedicate her goals in her soccer games to me. That is so nice of her! I feel so lucky that I am surrounded by so many nice people around me. I hope I am able to do something for someone one day !

I was little restlessness on Wednesday night since i had to stay empty stomach after 11 pm until next day for the tests. I almost fell asleep by 9:30 pm when my dad woke me up and helped me eat prior to going to bed to make sure I am not crazy hungry next day. I finish my steroid on Wednesday so there should be change in my eating pattern and the weight gain. I do wish that it happens soon because the picture day is coming !