The Tonny Kasozi story

Tonny Kasozi story

What were you doing when you were sixteen?  Most people are:  learning to drive, spending time with friends, late night study groups and just barley getting by in their classes, or getting their first job. Not for Tonny Kasozi, earlier in the summer of 2014, Tonny was diagnosed with stage four cancer. He is fighting for his life each day. His only belonging he keeps with him at the hospital is a small bible. Tonny’s faith keeps a smile on your face; he challenges you to be a better person. He is back and forth to the hospital getting injections of all kinds and is barely able to keep his food down.  His body is swollen, and he is very weak.  It all started in May when Tonny was beginning to feel sick. He was often falling sick and had signs of malaria accompanied with loss of appetite.  He would come home from school and go to sleep immediately and sleep until the morning. The feelings of sickness were on and off for two weeks and in that time his temperature was high but he felt very cold. Christine, of the sponsorship department, was living in the guesthouse at the time and was hearing all of this first hand from Tonny.  After two on June 23^rd she took him to Ray of Hope.  ROH treated Tonny for malaria and gave him some pain killers. The following day he was throwing up and came to Christine and told her that he needed to go to the hospital immediately.   When returning to Ray of Hope they referred them to go to Mulago as they were unsure what the cause was. Mulago is the largest hospital in Uganda and is used as a teaching hospital to the local university. When they got to Mulago Tonny was immediately admitted into the hospital. They took blood and stool samples and tested for malaria a second time. The doctors could not seem to find any problem so they referred us to the Kadic health hospital. While at Kadic they again took blood and stool samples and they gave him an injection to help cool the body temperature. The doctors recommended Ketoconazole (used to treat fungi infections) and Azithromycin (used to treat bacterial infections such as bronchitis and pneumonia). The paediatrician was not in at the time so they gave them an appointment for the following day with doctor Kiggundi. He went in for a cat scan and the results showed that the pain was coming from an enlarged spleen from riding his bike to and from school and that all he needed was time to heal. The Dr. suggested that we let nature run its course and we come back for a follow up appointment in two weeks. Not even a day later Tonny went to Christine and told her that things were getting worse and that he needed to be looked at again. Christine contacted Wilson to get the go ahead to take Tonny to The Surgery, the international hospital.  The 24^th they went to The Surgery and took many blood samples and tested for everything an also gave him an injection to cool his body. They tested for malaria, HIV, CBC, UTI, as well as blood and stool samples. The doctor didn’t find any results they gave him water drips and pain killers. Shortly after he began to swell, his face and stomach became enlarged. He rapidly began to lose weight and they began testing urine/blood/stool every hour. They also took another X-ray and cat scan and were still coming up with no results. The doctors wanted to just test the bone marrow as a last resort. Tonny was then sent to the KLM hospital to take his first of many bone marrow samples. The results came back showing that Tonny had leukaemia.  This is where he began his long journey at Mulago cancer institute.

24/09/2014

Tonight Edgar and I went to see Tonny I had picked up some Lucozade (an energy drink) and brought the big poster that had all the I <3 Tonny posters on it. He cracked a smile when he saw it. We got to the hospital and someone had just shut the door to his hospital room. It was late in the evening when we got to the hospital and it was so quiet, there was a sense of peace in that place that I had never experienced in my life before. As we made our way into his room there he was seated on the bed with his swollen legs hanging over the side of the bed. Tonny’s face was swollen and his oxygen tube was off to the side of his face so he wasn’t getting the correct amount of oxygen. He looked tired.  He didn’t even have the energy to fix the tube that was lop sided. Edgar immediately noticed it and sat next to his brother to fix the tube. As he was adjusting it Tonny closed his eyes. You could see the pain. His hands were no longer proportionate to the rest of his body size. It made him look giant like. Having these long skinny arms with these huge swollen hands. He had a bowl of food sitting next to him on the bed- he was struggling to eat. He was trying so hard to keep the food down. With his body rejecting all the food he was trying to eat he was having to decide to keep it down or let his body release it. I asked him how he was and he responded with ‘Not good’ just like every other time I asked him. I still asked no matter what though. I presented him with the I <3 Tonny poster and he smiled so big, but only for a moment because then the rest of his body caught up with him and he was no longer able to keep that smile. Edgar helped me put it up on his wall- right above his head so he could see it clearly. After we got it up Tonny layed down, turned to the wall, and fell asleep. That was our clue it was time to go home.

Thursday 25^th September 2014

Movie night! Edgar and I were so excited we brought my laptop and a pillow and all of my DVD’s so Tonny could pick whatever movie he wanted to. I had my backpack with me and I was totally stressing all I could think about was whether someone was going to try to steal it right from my back. I also threw a light coat in the backpack- my black zip up hoodie because I knew it always gets chilly. We always end up staying at the hospital past curfew and it gets cold. We took the pillow because Tonny needs to be eating while he is in a seated position but he cannot spend so much time sitting up.  We hopped into the taxi like every night before and it cost 2,000 shillings which is equal to 75 cents we take this taxi to Kyunga stage and then have to get a boda for the same amount of money up the road to the Mulago Cancer Institute. We walked up the hill and through the gate. It was dark outside already. This night was different we got dropped off at the opposite end of the hospital then where we usually get off. We walked through the hospital grounds and people sat all around. Some waiting for other patients, some sick that don’t have rooms, others sleeping all over the compound. Tonny’s room is the first door on the left. It is not up to (my) standard accommodation but it was also the best possible room for him to be in. Edgar knocked a few times and opened the door. We slowly went in- you could already hear all the women in the room welcoming their sweet Edgar in. After they saw my face Jaja, smiled and told me to hug her. I kneeled on the banana fiber mat and gave her a big hug. I greeted Tonny’s mom and auntie. Tonny was again sitting up on the bed, really struggling to breathe. The TV was going in the background- there was a bad reception but the sound kept coming in and out. The room was hot. And Tonny’s little half-sister who is 9 months old was sitting there crying. When I locked my eyes on his, he gave me a half smile and put his hand out to greet me. I held his hand for a long time and just said ‘Hi Tonny’ to which he replied ‘Hi Shan’. I asked him if he was ready for this movie night. He spoke between each big breathe of air and just simply said I am weak. He was unable to even hold a piece of paper. I sat on the mat with his Auntie and Jaja. Most everything was spoken in Luganda. I sat there and enjoyed just being there sitting in the presence of the Lord and thanking him for Tonny’s life. Sometimes I don’t understand the convictions that come from the Holy Spirit. I could only pick out a few of the Luganda words every now and then. Otherwise I just sat there. Edgar stood up at one point and I was able to pick out two phrases ‘Go buy with money’ and he wants fresh milk’ (in Luganda of course) Edgar stood up and walked down the road to but some mata (milk). As I sat there I just listened every once in a while making a face at the baby and then smiling at Tonny and just telling him how much that I love him and how much God loves him. When Edgar got back he sat next to Tonny opened the bag of milk, put a straw in it, and helped him drink whenever he wanted it. I am so encouraged by Edgar and how at 15 years old how mature and loving he is to Tonny. We sat there for a long time. Sometimes in silence, other times in laughter. Tonny at one point even made fun of the picture I put of myself on his wall… still ganging up on me even at the end of his sweet life. As we got up to say goodbye I sat on the edge of his bed and held his hand while Edgar sat on the other side and we prayed. I prayed that God would spare Tonny from this pain and that he would be healed in Jesus’ name. That he would continue to be a light to those around him and that he would always be reminded of what an impact he is to all those people whose photos are on that poster hanging on his wall. We thanked God for his never changing nature, for his new mercies every morning, and for his never ending love in our lives.  We left that night and as we walked down the road to catch our boda back to the taxi station- I just hugged Edgar. I told him how much Tonny loved and appreciated him. I also told him that if I ever end up in the hospital that he has to treat me with the same respect. (Ha!) I also said to him that I would give anything to take this pain away from him, that I would trade my health for his in a second. I would have done anything.

Early this morning on the 26^th of September Tonny went to be with the Lord.

Thank you Lord for letting me love Tonny. Before I even met him, I loved him. I always wondered why God let me love someone so much before I had even met them. God new that Tonny needed a helper and encourager. I spent a lot of time with that boy in these last two months and got to hear his heart for the Lord and be incredibly blessed by his faith. He loved and was loved wildly. I am so thankful for the time that I got to know Tonny Kasozi and my life will forever be touched for knowing him. He may be gone but he will NEVER be forgotten. I was reflecting back on some of the good memories we had. In between his chemo treatments Tonny got to stay here at the guesthouse and we had so much fun together. There is one memory that sticks out among the rest. It had rained so hard all day. He couldn’t eat pasta- when mixed with the meds he was taking it would upset his stomach. I was only ok with this because it meant I got to buy him dinner from the ghetto! The place no mzungus go. We were all wearing sandals because lets be real who wears tennis shoes in Africa? Tonny, Edgar, and I walked down the road to the blue gate that leads to the ghetto and we all were slipping all over the place the rainfall had created so much mud that we couldn’t even take two steps without slipping as we walked every time I felt myself beginning to slip I would put my hands out and he would just laugh. We got to the blue gate and there is a big trench that separates the road. I knew I was going to have to jump and I DID NOT want to. Edgar jumped right over with no problem but it was so dark that I couldn’t see my hands in front of my face- I finally got the courage and took the leap of faith with my eyes closed! Never had I ever seen someone laugh that hard. He was still weak and skinny but his point shoulders just moved up and down and he was laughing from his gut. As we walked into the ghetto I started talking to all the people I could. The boys just laughed. We even had one lady whose name was Shakira that asked Tonny and Edgar if she could come shake my hand. We went to a small shop and they bought for me juice with the little money they had.

I will see you soon Tonny. I love you.