Hi, my name is Tiani, I am Mrs. Van Baalen’s daughter. I am 19 months old and I have Brain Cancer. I would love to share my story with you. I grew up like any other baby girl and reached all my milestones like I was supposed to. I was a real joy to mommy and daddy – always smiling, laughing and playing.
I started to walk on my 1st birthday. At 13 months mommy and daddy noticed that I sometimes held my neck to the right and that I started to stumble and fall alot. Mommy took me to the doctor and he said that I had a bad ear infection along with tonsillitis. So he gave me cortisone and antibiotics. I got better but as soon as the medicine was finished I got worse again. Mommy took me to a few specialists including a chiropractor, who said I had a neck injury, probably from school. Eventually after many antibiotics, the ear-nose and throat specialist decided to give me grommets to help the fluids behind my eardrum drain. By now I wouldn’t walk without someone holding my had, my balance was poor and I fell a lot. I went into theatre for my grommets on the 15th of May 2012.
I came out of the theatre and looked okay. I drank a bottle of milk and went back to sleep. Mommy and daddy took me home that same day and I ate mash for dinner. Later that night I started vomiting. Mommy looked really worried and told daddy that something told her that there was something seriously wrong with me. I got really sick that night and by the next morning it was painful for me to sit upright and my neck was pulling to the back.
Mommy took me back to the ear- nose- and throat specialist but he said that he didn’t know what was wrong with me, so mommy took me to my paediatrician. He said they might have injured my neck during the previous day’s operation. He tested my reflexes and noticed that my right leg’s reflex was abnormal. He sent me for x-rays of my neck to see if there were any injuries and also for an MRI scan.
Mommy and Daddy prayed that it was only a neck injury. The lady who had to do the MRI scan said that I had to come back the next day for the scan as she had to sedate me and I had already drank some milk earlier that day. Mommy looked at her with tears in her eyes and begged her to try to do the scan. The lady agreed and daddy went in with me as mommy was 36 weeks pregnant with my little sister and was not allowed to come with. Mommy prayed that God would send an angel to hold my hand so I would lie still.
The angels stayed with me the whole time and after the scan we went back to the doctor’s rooms. The doctor looked sad and asked mommy and daddy if they would like some coffee. He told mommy and daddy that I had a huge brain tumour in my brain and it was crushing my brain stem. He told daddy to get us in the car and to take us to Unitas hospital in Pretoria where they would be waiting for us. I was still awake but very non-responsive by now and my body was very spastic. It wasn’t easy for mommy and daddy to see me like this. They cried a lot on the way to the hospital.
Daddy drove really fast and when we got to the hospital, the neuro-paeditrician looked at me and sent mommy to the ICU with me while daddy opened a file for me. Another doctor came to see me and told mommy that he would be taking me to theatre within the following 20 minutes to put a drain in my brain to relieve the pressure. The doctor explained to mommy and daddy that my brain might “jump up” if they relieved the pressure and that it could cause my death, but thanks to God this didn’t happen. Because the pressure on my brain was now less I came from theatre quite alert and I tried my very best to pull the pipes out of my throat. I had to be on a ventilator and to prevent me from pulling on the pipes they had to tie my hands to the bed – this made me extremely anxious.
They gave me antibiotics, morphine and cortisone to help with the swelling on my brain and kept me under sedation most of the time. They wanted to give me a few days before doing the operation to remove the tumour. The doctors spoke to mommy and daddy and said that my chances of survival were really slim. They said I might not survive the surgery and if I did I could be blind, deaf or paralyzed.
But mommy and daddy kept faith and by now thousands of people all over the world were praying for me.
Sunday morning came and I could see mommy and daddy by my bed before I went in to theatre as I was alert. Mommy told me not to worry – there would be lots of angels watching over me.
I came out of a six hour operation and miraculously – I could move my arms and legs! What a relief for mommy and daddy! I didn’t know what was going on, because I couldn’t see – my eyes wouldn’t focus and I couldn’t use the left side of my body. I could also not lift my head or swallow my milk. I was like a new born baby, but worse – because I couldn’t swallow.
The sisters in ICU and mommy and daddy helped me as much as they could but I was in a lot of pain. I had to go back to theatre so they could put a feeding tube through my tummy so mommy could put my milk in my tummy. They also put a port in my neck so they could use that for when I started with my chemo. The oncologist said that they didn’t want to discuss a treatment plan for me as yet, as they didn’t believe that I would ever leave ICU alive.
The tumour was huge (7cm by 6 cm) and took up a lot of space in my skull. Luckily the doctor managed to remove 95% of the tumour. He said it was an absolute miracle – the tumour lifted by itself near my brainstem – and I know this is because of the power of prayer. The doctors said I might have to stay in hospital for 6 months – but 3 weeks after surgery I went home!
The doctors also said it would take at least a year for me to learn how to sit again, but I am a child of God and a little fighter so with a lot of love, help and prayers, I got better and was sitting by the time my little sister was born! I could see her as my eyes were focusing. The day I met my little sister (Mioni) was one of the best days of my life!
Mommy and daddy spoke to the oncologist and he suggested that I start with chemo as soon as possible. So as soon as Mioni was born, I started with chemo therapy. I got really sick from the chemo and lost a lot of weight and most of my hair. I also often get infections after chemo. Mommy has to keep a watchful eye on my temperature as I will quickly run a fever of 39.9° and then I don’t feel well at all and mommy has to put me in a cold bath. My immune system is really low, so I am not allowed to play with other children and I am not allowed to go to shopping centres or even to church. I really miss having friends!
Mommy and Daddy did a lot of research and discovered that the chemo isn’t winning my fight against cancer. The chemo is just preventing the tumour from growing again. The thing I actually need is radiation. But I am still too young – they only give that to kids older than three. So they are just hoping to keep me alive until I am old enough to go for radiation. But mommy and daddy are worried that I might not make it until then – I am so weak and weigh only 2 kg’s more than my 3 month old baby sister. Because of the location of my tumour (near my brainstem) there are so many risks; if I do get to go for radiation therapy – it can cause blindness, deafness, developmental and growth delays or abnormalities and a reduction in IQ. It can also cause damage to the healthy surrounding tissue.
So mommy found a different type of radiation called “Proton therapy”. Compared with standard radiation proton therapy has several benefits. It reduces the risk of radiation damage to healthy tissue, may allow a higher radiation dose to be directed to the tumour, and may result in fewer and less severe side effects (such as low blood counts, fatigue and nausea). Proton therapy has been used for more than 50 years and lowers the risk of tumours recurring later in life.
Mommy found the only centre in South-Africa where they have this machinery to do proton therapy – they do it at the iThemba labs in Stellenbosch. But, they only do the proton treatment during the months of March, May, September and November and only on Mondays and Fridays. They unfortunately don’t have an oncologist working there at the moment, as he immigrated to Ireland. So they won’t be able to help me in South Africa.
Mommy then searched for centres overseas that do proton radiation on a regular basis and she spoke to a neuro-oncologist (as we don’t have one in South-Africa). He said I would need to go for proton radiation as soon as possible and I would need between 4 and 7 weeks of consecutive treatment – Monday to Friday – resting during the weekends.
Dr Jeff Buchsbaum from the IU Health Proton Therapy Centre in the United States contacted mommy and told her that their centre has a very extensive paediatric focus and they would love to take on my case. They estimate the cost for 30 days of treatment to be 112 000 US dollars which is the equivalent of R940 000.
If I don’t get this treatment chances are good that I will not survive.
Mommy and Daddy need to find a way to raise enough money to take me to the US for treatment as soon as possible. Mommy said not to worry she believes that this is possible and God will make a way.
Thank you so much for reading my story.
Lots of love and kisses
P.S If anyone knows of anyone who could help me in any way at all please send an email to firstname.lastname@example.org.
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