The port that was inside my chest…
On Monday, June 24th, I went to the hospital to meet the surgeon who would do the surgery to take my port out. He said that it will be quick and I will be out of the hospital within few hours. The only thing I did not like was that the surgery is scheduled for afternoon at 2 pm which means I will have to stay hungry from midnight till after surgery. But I was happy that it was really happening. My blood work showed my ANC was lower than 750 but I was hoping that it will go up by Thursday so that I can start my Maintenance Phase.
Finally, on June 27th, the day came when I was about to get this port out. I took the shower with antibacterial soap the night before and next morning and was all ready to go to hospital for my surgery. The only thing was that it was only 10am and I was already starving. We went to the hospital and waiting for the blood work results to come back. I was a little disappointed because my ANC went down even more to 260 which meant that I could not start my maintenance phase but I can still get the surgery done.
They called us to the surgery unit at 11:30am because they had the opening and might take me by 12 pm . But then we waited and waited and waited and waited until 3:45pm before the doctor came to talk to us and then the nurse came to take me to the OR. I was getting restless and cranky by the minute because I was so hungry and thirsty. The nurse said that there was an emergency case that caused the delay in my surgery. But finally I was in the OR and my parents in the waiting room. I came back out at around 4:50pm in the recovery room with my parents by my side. My mom told me that I was asleep for about 45 minutes before they started to wake me up and it took me some time to feel better and open my eyes fully. I ate some lemon ice which made me feel little better. I had to go in the wheelchair to the car because I had no energy to walk and I was still dizzy. When I reached home, I had to eat my Samosas and that felt good. My dad showed me the port that was inside me and I could not believe it when I took that in my hand. I was allowed to do anything and everything and no restrictions for anything.
It was sore for few days and then it started to feel better by the weekend. I rode my bike first time after a long time and felt so good. I wasn’t even tired doing that. Played outside with my brother that surely made him happy! Now I had to go to hospital next week for the blood work to get my chemo started. I knew I was a step closer to getting back on the ice!
On June 10th, I went to the hospital for the final treatment of the 5th phase. I was excited about it because after today, I will be in the Maintenance phase. My ANC was 1140 and HB 10.4 so I received Vincristine and Methotrexate. I got the higher dose of Methotrexate so I was getting little sore throat when I came back but it was not as bad as it used to be. It felt so good when the doctor started discussing about getting my port out soon because I was ready to get the medicine through the IVs in the arm in the Maintenance phase. I went to school the next day but did not feel too good and daddy had to pick me up from the school. Every day I was getting better and on was able to attend a charity event in the name of DMCF which was very inspiring. I promised myself that I will definitely volunteer for these kind of things, once I get better. I was happy that I was able to attend the school for remaining days of the school year.
It is so crazy, that the entire school year and the flu season we were trying to protect me so I did not attend the school but then my brother got the flu on the last day of school. I was then confined to my room most of the time and lot of precautions were taken so that I do not get any infection. He started on flu medicine and now I had to take the medicine too as a prevention. So more medicine added to my list of medicines..Great! But now I am a pro at taking the pills by mouth that it really does not bother me. Week passed by so fast and the vacations started and I was excited because next week I was going to get my port out.
After recovering from the tiredness from the camp, I went to the hospital for my treatment on May 30th. First I had the spinal tap for which I had to stay hungry overnight, which I do not like at all. Then I got the Vincristine and Methotrexate because my ANC was 1410 and the Hb 11.1. The best news that the doctor gave me was that I can go back to school for rest of the days. I was so excited about that and was getting ready to go to school on Monday June 3rd. Just then, I started with the low grade fever over the weekend. I was feeling okay but did not want to eat and the temperature was staying between 99 and 100.6 so the doctor said to watch it. I was getting nervous whether I will be able to go back to school on Monday or not. So I went to hospital on Monday morning to get checked but I made sure that I take my school bag just in case. Doctor checked me out and said that I am doing well and no need to worry. She gave me okay to go to school and I forced my dad to drop me to school even if it was so late. Doctor was surprised to see that I was so eager to go to school. My mom called the school to inform that I was coming and when I reached school my counselor was waiting for me. It felt so good to spend time with my friends in school and attend the classes, tests. I even gave my Spanish presentation in the class and I was so happy because I worked hard on it. The whole week went by so fast and I was excited for the next week.
The highlight of this week is the nice surprise that my parents gave us for the Memorial Day weekend. I was thinking about the long weekend that everyone will go on vacation or do something fun but I am going to have to stay home. Instead my parents took us to this wonderful camp called “Happiness is camping” which is specifically for the kids like me. They have counselors, Doctors and the nurses on the campus 24 hours in case an emergency arises. My brother and I were so excited to go there and could not wait to see what it was like. On Friday May 24th, we drove to the camp in the evening and the tough part was sitting in the car for almost 2 hours. When we reached there, it was super nice with lot of open space, greenery and very friendly staff. We got our cabin with the bunk beds. It was so cool. I immediately felt energetic when I saw a big basketball court, Gaga Pit, swimming pool, lot of different activities and the giant board games. I played a lot on the first evening in the gaga pit and let me tell you, it felt soooo good. Later in the night we had camp fire and I made actual S’mores and ate them too. I surprised myself with it. I know my parents were happy to see me eat. I went straight to bed after that because I was tired.
Next morning, May 25th I was all ready at 7 am to get started with my day full of activities. I started off with archery which was a lot of fun. I wanted to do other things that my brother was doing like the horizontal ladder 30 ft high and flying squirrel but I just did not have enough strength in my arms or the grip so I just watched him having fun. I did some Arts and Crafts also which was interesting and my mom said it is good for my fine motor skills. I loved the time in fishing even though I did not catch even a single fish while others got some and playing with kids in gaga pit. There was a lot of walking involved back and forth to the activities, cabin and the dining room which was tiring. I surprised my parents by going into the swimming pool even though the water was ice cold and then doing a lap of each of the 4 strokes. It felt so awesome to be able to do everything that the other kids were doing. By the late afternoon, when I went to my room, I got very tired and my whole body was so painful that I started to cry. I just could not move. I was allowed to take Tylenol after my dad called the doctor. I could not go to any activity in the evening because I slept from 5 in the evening until 6am next morning.
On Sunday May 26th, I was little better after taking another dose of Tylenol and was able to play the dodge ball, prison ball, kick ball, shoot some hoops and even go boating with my dad during the day time and in the evening, play gaga , giant chess games and archery tag. It was lot of fun but it made me realize that I need to work very hard to get my strength back so that I don’t feel these pains with little bit of playing. I have to get ready for hockey this summer.
On Monday May 27th we drove back home after brunch and it always feel so good coming back home. I had some good fun days!
After so many good and exciting events last week, these next few days were not that exciting for me. There is only one thing that everyone is always worried about and that of course is my eating. I know everyone is stressed about it and I am too..some days I eat a little bit better but other days it is just hard to do it even though I want to. I mostly stayed home during the 10 days except couple of days where after a very long time, I got to stay in the hotel with my mom and dad. It was the nice change for me and a different atmosphere from the same routine at home. I had to go to the hospital from there two times for my Vincristine and Methotrexate on May 20th and Pegasperagase on May 21st but at least I was able to stay for 2 nights and go out to eat at On the Border for the tacos because that’s what I wanted to eat each day. One thing I noticed that walking so much in the hotel back and forth in the hallway made me so tired that I walking like a snail. I really need to work on getting stronger.
So the highlight of this week was the one day trip to Magic Kingdom in Orlando, Florida on Tuesday, May 7th. Again thanks to my hockey coach Marley, who has been by my side since the beginning and the Sunshine Foundation.
The Dreamlift operation is organized by the sunshine foundation along with the local police officers and the firefighters. They took 100 children with their parent on a chartered plane to Disney world for a day. It was amazing and surprising to see that at 6AM there were so many police officers, firefighters, young people dressed in Disney characters to support and cheer up kids like me and made us all feel so special. It always makes me wonder how people make time to support strangers. Thank God my counts were good and I could experience something like this. For one day, I forgot everything about my illness and I enjoyed a lot with my dad on different rides that I could do and just walking around a place other than hospital. I did miss my little brother who was very happy for me. I gave the interview to the ABC news anchor to express my gratitude towards the foundation. By the time I came back in the night, I was exhausted and went straight to bed.
Thank you coach Marley for enrolling me in this so that I could experience such an amazing adventure!
On Thursday, May 9th, I had to go back again to the hospital for the second dose of Vincristine and methotrexate. I lost another 2 pounds but at least my counts were better. My ANC was 3120 and my Hb was 11.1. My dad and I spoke with the nutritionist and the doctor about my loss of appetite and the weight loss. The nutritionist talked to me and told me that I really have to try to eat because if I do not eat then the last option is the nasal tube. I am scared; I am worried but just cannot eat even though I take zofrin for nausea. I promised the doctor and my parents that I am going to try harder. I did do little bit better on the weekend and my parents were happy. On Saturday, May 11th, I really enjoyed the good weather and after very long time went to a store with my parents to shop around. On Mother’s day, May 12th, I thanked my Mom for all she has done for me and continues to do for me because without her I could not have been so strong in dealing with this disease. My mom said that the best gift would be if I could start eating well and get better. I told her that I will get better soon and will take care of her then!
Monday, April 29th was the start of my 5th and the final phase of the chemotherapy. My counts were so good that I was amazed. My ANC was 3020, Hb 10.1. I had to go for the spinal tap first and then I got the 2 medications Vincristine and Methotrexate. It was not too bad but I just could not eat because of the nausea. I actually lost around 5 pounds in last couple of weeks and you know my mom is too worried. I did not like the part that I had to come again next day for Pegasperagase. It just takes the whole day with this medicine and I do not feel good at all after it. Well we had to do what we had to do. The best part was that after the next day, I did not have to go back for next 10 days for the treatment.
So I met this new resident doctor at the hospital who told me his story that when he was about my age he also had cancer and now he is doing residency under the same doctor who treated him. That was very inspiring! I told him that I want to be an oncologist too so that I can tell the patients from my personal experience how it is going to feel and how to deal with it.
Rest of my week went by not so great because of nausea, vomiting and not being able to eat. My parents and grandparents were so worried and were trying to find different food options. It is very hard to explain what I feel when I try to eat the food. I did get hungry and had the desire but when the food came in front of me, I just could not eat it. My mom said that my chubby cheeks were all gone and I started to look skinnier. But the good thing was my hair started to grow and I can’t wait to have the full head of hair!!!
New look – head shaved!
On Monday, April 22nd, back to hospital to get my counts checked. They were still low as expected. My ANC was only 190 and my Hb 8.7 so they told me to come back next Monday. It was not a happy day…. first I lost 2-3 lbs in last one week, then I had to stay without the food and water after midnight for spinal tap just in case my counts were good and now they are not so I have to go back to do the same thing next Monday. Also my doctor asked me to walk on my heels which I am not able to do. Even standing on the heels is hard. I tried to do it with holding on to the table but could not do it. The heels started to pain. Doctor told me an exercise to do and at home my mom was constantly reminding me the proper way to walk and the stretching exs to do every day. Sometimes it is annoying to not being able to things that were so easy before.
I was having such a hard time with food because i no longer take the appetite stimulant after the reaction I had. It worries me but not that much but I know my mom is very worried about it. My grandparents have been so caring and always trying to help me eat. In terms of dealing with the food with me, I think my dad has more patience than what I thought he had. He would get different foods for me from outside any time of the day in case I did not want to eat the home food but then I would eat very little or not eat it at all because of nausea or lost my appetite. It is sad to see food go to waste but I cannot help it.
Even though I was not having such a great week but still two exciting things happened. On April 24th, I had a visit from my favorite hockey coach and his son who is also my classmate. We had good time talking about hockey and planning my return to the hockey. It was very exciting!! Second fun thing was on April 25th, I finally got my head shaved. Looking at my clean bald head, my mom and i realized that I have a good round shaped head and I do not look bad at all with bald head. Now I just have to see how long will it take for my hair to grow back! I enjoyed some good weather on the weekend with the hope that my counts would go up so I can start my 5th phase soon.
After I came home from hospital, from April 15th onward, I was behaving normal but I did not feel too good because of lot of nausea, throwing up and less desire to eat. I knew this was happening because of Vincristine. This was not a good week for me at all. I went to the hospital for my blood work on Thursday, April 18th, to get an idea about my counts to see when the 5th phase can be started. Even the counts were very low. My ANC was only 160 and my Hb was 8.6. No wonder I was feeling so tired and cold all the time. They told me to come back on Monday just in case a miracle happens and my ANC count will go up more than 700. I had to be very careful again because of risk of infections. Also the last few weeks affected two of my grades which did make me little upset but I knew that I will be able to do better when I feel better.
The best thing about this week was the visit to my cousin’s house. Just to tell you how crazy it can get at times….. as we were leaving from home to drive to my cousin’s house on April 21st, I just had the craving for Pizza and I just wanted to eat that only. When we found one pizza shop closed then we realized that it was Eater Sunday. I was getting cranky by the minute because I just wanted to eat Pizza and it was driving my mom crazy because my dad drove around to find any pizza place open. No Luck and that made me so upset. I finally agreed to eat at Dunkin Donuts. We finally reached at my cousin’s house an hour late. My mood got so much better because I had lot of fun running after my little cousin and playing outside in the sunny weather some cricket with my brother and cousin. That ended the week well!
What a scary week this was both for me and my family! You wound not even believe what I went through. So Monday April 8th, started off with my hospital visit and the chemo medicines which I am used to now so I can deal with it fine.
On Tuesday, April 9th, in the late afternoon, I was attending my class and then suddenly I could not feel my right arm, then I could not move it and it was hanging by my side. I started to cry and screamed for my daddy because it was so scary. He came running upstairs to see what was going on. Then after couple of minutes, my sensations started to come back and I could slowly move my arm but the grip was weak. My grandparents got worried too. I felt a little numb on right side of my mouth and tongue too but then it resolved on its own. My dad called the hospital who asked us to come to the emergency room. As we were getting ready to go to the hospital, my dad called my mom on the phone at work about what happened. I could hear her getting worried and mentioning something like transient stroke like symptom. By the time I went to the hospital, I was all good. My arms and legs were functioning fully, no problem with my mouth. The doctor came and did the neurological exam to see if everything was okay. The doctor also mentioned the same thing that these were transient symptoms which occurred due to the methotrexate toxicity. I was all good and was discharged from the hospital.
I was doing fine at home until Friday, April 12th, when I started to have another of my weird days. I was in my room attending my class and then suddenly I had this urge to move…move fast or else something is going to happen. I came running down the steps and could not control myself as I was running around aimlessly and jumping around. My dad had to hold me to calm me down. I told him that I was hungry and by the time I ate, I was calm. This happened again in the night but that time, I had already eaten food and the episode only lasted for few minutes. My mom called the hospital and spoke with the doctor who said to monitor me until the next day to see if this is happening repeatedly then I will have to go to the hospital again. Next morning Saturday April 13th, I was playing fine and suddenly it happened again. I cannot describe what was happening to me at that moment. I had lot of involuntary movements in my arms and legs; I could not walk in straight line. My mom tried to do the finger to nose eye hand coordination test which I could not do. My dad said that I was behaving like a little child and could not catch or throw the ball normally. My parents took me to the ER for check up where the doctor said that it may be due to the toxicity of the appetite stimulant Periactin. I had one episode at the hospital too which doctor was able to see. I was finally admitted in the hospital for observation and IV fluids were started.
Next morning April 14th, I was still in the hospital in the morning without any new episode and feeling much normal. Doctor came by to say that since I did not have any more of those episodes, I was okay to go home. I was so happy to hear that because it is sooo boring in the hospital. I also got the final dose of my chemo medicine Vincristine and that was the end of the 4th phase. Before I left the hospital, I got to share my journey with this boy who was recently diagnosed. He was a year older than me and I told him that it is going to be fine once you get used to it.
I finally came home on Sunday evening and could not be happier!