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.

Life is beautiful.

Last week in a recap. Monday was an office day so we spent our time in meetings and going back and forth from all the different departments. I recently joined the Planning, Managing, and Evaluating (PME) committee along with Porsche and Victor. We review the following weeks plan and look at any conflicts that may be in place. Mondays and Fridays are typically office days: Mondays are primarily used for planning and Fridays are used as an evaluation time. It is a very effective way to stay involved and to be a part of everything that is going on throughout the organization. Any way- Monday evening we have the special ladies bible study so we met with them. We are still working through Ruth. It has been SO much fun to get to know them since we have visited their houses the want to be so personable. They LOVE sharing with us what is going on in their lives and just how God is doing big things for them. I always walk away from that study so refreshed. Some women even bring friends now. I was semi flustered due to my lack of laptop. Porsche had moved out for a board meeting so our awesome MST’s were so willing to jump in and lead the group! I went to bed quickly Monday night.

On Tuesday the team went to Sanyu Babies home as I stayed back to have a meeting with the PME committee. After the meeting was over I had the rest of the morning off. So I decided to grab a taxi then a boda up to the Mulago cancer institute. I went to go see our sweet friend Tonny. I got to the hospital with Edgar and we just sat on the floor and just spent time just in silence some of the time. Edgar helped Tonny bathe and I sat with Jaja (grandma) and we just sat there and chatted. She is so good to me, everytime I am there wel always talk (even though there is a HUGE language barrier) about how fun it would be if we stayed together. How we would sit in the company of eachother and just have so much fun. She makes me so happy! I am so thankful she stays with Tonny all of the time. I came back to the house and got packed up to head to the village. We left at 2:00pm. When we arrived to the village we were able to get our tents set up pretty quickly. We went to individual homes so we could do some New Skills with them and teach them English. Alison (an 18 year old from Canada), Esther (MST Coordinator), and myself walked down the road to Mama Sunday’s home. As we walked children who had just been released from school would follow closely behind and let out a giggle every couple minutes. I would hear whispers of ‘Mzungu’ and ‘Muwala Wamusumba’. That place is home to me <3. We worked on several phrases like, “Go get a chair” and “Go brush your teeth” . Jeremy the new MST brought a ton of resources for teaching English so we had these HUGE flashcards with pictures of basic home essentials so we worked through a handful of those and then wrote it on her whiteboard so that her and her children can be working on the things we taught them during the week.

Wednesday I went over to the school, Empowered Leaders Academy (ELA) with Porsche and we met with the Bursar for the school to talk about registering a couple kids that a volunteer had left money for. I was also trying to find a way to get a uniform for my sponsored kiddo. I failed. The rest of the team were clearing a path and doing some manual labor. We had some personal ministry time but it was so hot that most of the volunteers found comfort in the shade of the trees around the church. I layed down in my tent for just a moment and woke up a few hours later all sticky! Wednesday evening we had the coolest most radical and loud praise rally. I am not even sure how long we sang- but it was beautiful. We sang until we ran out of songs and then we invited the kiddos to lead some praise songs. There was dancing, jumping, praying, laughing and it was a beautiful evening. During our devotions later in the evening we heard a boda pull up. It was Gaspar, He is a volunteer that has been helping out for a couple months here in Uganda and he is seriously one of my best friends, I am so thankful for him. He spent two weeks in South Sudan just spreading the word of God and visiting orphanages. We spent time catching up and going through every story and adventure he went on. We were so happy to have him back!

Thursday was another day of manual labor but again Porsche and I had a staff meeting with some of the teachers so we went over to take minutes for the meeting and just be another set of ears to listen. It was one of the longest meetings I have ever attended I am not quite sure how they do it but Ugandans like to talk about every detail of every subject. I feel quite knowledgeable of the education system we have in place. J IN the afternoon we headed home and got ready to go to the airport. It was a sad evening for EAC we lost a great volunteer. It is so exciting at the same time though because I know that God is going to use Gaspar in Hungary! He has so many plans for that boy. Porsche, Sandra, Victor, Patrick and I escorted him to the airport. The whole way there I kept asking him to stay and to just not get onto the airplane…he did.

On Friday we had an evaluation and planning meeting.

Saturday we went to see Tonny again. He was not as good today. He got up to take a shower. He is not very responsive. Edgar helped him bathe and then he came back to eat some food- A cup of tea and two boiled eggs as he began to eat the eggs he just quietly asked for a bucket in Luganda. Edgar brought him a bucket and he immediately began to throw up the little he had managed to eat. I would give anything to take this from him. I was just asked to make a small write up for how his sickness started so I feel even more connected to him and my heart just breaks into a million little pieces every time I think about it.

Sunday we went out to the village for church but the youth had left before we arrived to go minister to a neighboring church. I am so proud of them that they are going out and doing things on their own and not feeling like they have to wait for our lead!

On Monday we had so many meetings and just brainstormed new ideas for the coming months. In the evening Porsche and I were exhausted so we snuck away to the little café nearby the house and picked up some milkshakes to go. When we got back to the house we noticed our special ladies had arrived for bible study so we jumped right in. There were a handful of kiddos though that were being a distraction so I went and led a small group study with the kiddos. We sang some songs and read scripture and just had some fun times, we even invited the neighbour kiddos.

Today we had team bonding that I get the honor and pleasure of leading every week. We started with some praise and worship and then made a poster for Tonny. We spent some time in prayer for all of the sickness that has affected our team. I had everyone trace their hand onto the poster and then we wrote i<3Tonny on the paper and took a group photo it is going to be a part of a collage that we are putting together for them. Then we played a scavenger hunt. I cut up a piece of paper that had the word teamwork on it and then taped it all around the house and compound the team was divided into groups of three and they had to go searching based on clues that I made up for the places. After devotions Esther and I took the MST’s to the hospital. First stop? Tonny’s room of course. Last night in the middle of the night Tonny was having difficult time breathing so he began to pray out loud and then the doctors came in and gave him an oxygen tank. He is so swollen. In his stomach. Face and feet. He is very weak, he cannot even keep his head up. I presented him with the poster and then not long after that he laid down and went to sleep. No reaction. No communication. His heart races through his chest. I would give anything to have this hurt for him. This afternoon I have been working on his poster and spending some quality time with the great provider and just really seeking after His heart. <3

Heavy Hearted.

These last two weeks have been so challenging and has really made me grow in more ways than I had originally planned on growing. But that is how God works. Huh? He uses experiences and things that come up in our lives so that we will fully rely on Him in every aspect of our walk. Sometimes we have to endure certain things in order that Christ may be glorified. This week was exactly that.First of all I am going back to the old fashion way and using paper and pen for everything. I have had a glitch in my laptop and it has really been something that I have been struggling with. The not having it. It has become quite frustrating to accomplish the work in which I want to do. I constantly have to remind myself that it is just a thing. It is a thing that people have been working without for many years. But it sure makes the work lighter. My heart was being played with. We went to a place called Banda- right outside of the local university to get my computer “fixed” only to have sat there for 3 ½ hours to have windows 8 cleared of my laptop and no wifi capability left in sight. I sighed. I was ready to freak out. I am so thankful for our sweet team. They have been so helpful and encouraging and offer to let me use their laptops in my laptops absence. This is most likely the reason I have taken long to blog I was letting my heart settle down so it wouldn’t turn into a rant….oops. here we are. Ok. Moving forward. I am trying to think of what I even blogged about last time it is not even near the front of my head by any means…Ah yes the youth. How about we start from there- the youth are incredible and I am so thankful that I have has that opportunity to watch them grow just in these last two months. They have been so encouraging and I am grateful to be so close to them even with some of their ages, it is really like seeing good friends I always tell people when I have to wait a week in between to see them that it is like seeing one of your best friends and when we arrive in Zirobwe on Sundays I always go looking for them. This last week I had the privledge to share with the youth bible study. I shared about being the salt and light to the world. How it related to evangelism. And how it should look in our daily lives. We are so excited to see how God is going to use the youth- it is so beyond anything I could have ever imagined. We are still planning and inviting guest speakers and the like to be a part of our youth conference. (If you attend CRCC- I know you already know this and that you are praying for me because when my dad was on the stage on Sunday I was sitting in the front row on my sisters phone watching my dad talk about me and eating mango ice cream on the couch in the living room. Technology is so cool.) We know that everything that goes into planning this event will fall into place and we are hopeful for a big turn up! Last Sunday we picked a leadership team among the youth: Alex is the leader, Frank is the assistant, and Mastulah is our communications. We had all of the youth vote for our leadership team and the new spent time in prayer and just asking the Lord to lead these youth to exactly where we are supposed to be. Tonny, oh Tonny. My sweet boy. I am so thankful for this kid and wish you could all meet him. I feel like I have connected with him so well and he is really one of my great friends. Seriously don’t know what I would do without him. Tonny is 16 yrs. old. Earlier this summer he was diagnosed with lymphoid cancer- stage four. After his first round of chemo he got to come back to the EAC compound and he was doing well. He was able to walk about the compound, drink juice, make jokes, and just have regular conversation with you. After some time he would get a headache and make his way back to his room. I was determined to make him smile and get him anything he needed. We have pasta in the evenings for dinner and he is not supposed to eat it because it doesn’t mis well with his meds. So whenever it would be on the menu I would go get him whatever he wanted. Most of the time he just wanted local food. So Edgar and I would walk to the ghetto in the dark and get him some real food. There was one time we went after it had rained all day and it was so slippery but all three of us had gone. There is a trench that separates the ghetto to the main road (that is all muddy and slippery) and we had to jump across in the dark that I couldn’t already see I think I stood there for a solid three minutes before I took the leap of faith never have I ever seen Tonny laugh that hard. I thought he might break a bone because he has lost so much weight through this process that he seems so weak. It just makes me more passionate about going to see him and making sure that he is ok and purposing to go see him and make sure he is doing alright and just watching his face light up. He has such a great smile and when he is happy everyone in the room is happy. I know the Lord is going to do great things with this young man and this is only the beginning of his testimony. Anyway last week he headed back to the Mulago cancer institute so he can start his second round of chemo which is supposedly more intense. He has no appetite and is not able to  keep any food down. I asked him if it would be alright if I visited him and he was quick to assure me that I was most welcome. I asked him what I could bring for him and he said Lucozade (it is like a juice energy drink). Saturday we hooked him up with all the juice he could want, along with some potato chips, and candy. I also brought him a spiral notebook with a letter in it and asked him to be writing to me while he is there, I wrote some of my favourite bible verses in there and encouraged him to be reading it. If you would like to write to Tonny some sort of encouragement please email it to me shannengrace26@gmail.com and I will print it out along with a picture of you so that he can be blessed!! He would absolutely love that! At the moment he is struggling to even speak sometimes. Some days are good- and others are really hard for him. BUT to be honest I rarely even notice I am to thankful to see him breathing another breath and seeing him just be totally in love with Christ even through all the hardiships he is enduring. I don’t know why God is allowing this in Tonnys life but I do know that God has a master planned that is grander than anything that I could even imagine. I know that he is still good even through this.There is so much going on right now and I wish I had more time to write. It has been such an incredible blessing to be back, things are moving so fast.I just added another button onto my blog for one time donations which will go towards flights, bibles, hospital visits, among other things. If you are wanting to donate a one time gift of any size that will be such a blessing! Thank you so much for considering me. I am still short a couple of monthly sponsors. If this sounds interesting to you there is a link at the top of my blog on the right hand side! A gift of any size will help. Thank you so much.