Addelé was born on September 3rd, 2010. In general, she is a healthy baby who rarely even gets a cold. She met all her milestones, except for walking, as she is only now starting to walk. Each visit to the paediatrician, which we kept as per to the book, ended with the paediatrician being very satisfied with her progress and development. We never had any reason to be concerned.
Addele’s story as told by her mother
Addele Jonker was born on September 3rd, 2010. In general, she is a healthy baby who rarely even gets a cold. She met all her milestones, except for walking, as she is only now starting to walk. Each visit to the paediatrician, which we kept as per to the book, ended with the paediatrician being very satisfied with her progress and development. We never had any reason to be concerned.
A few months ago, she suddenly lost the use of her left hand. My father-in-law noticed this and was worried that she had arthritis or something. He made us aware of her little hand every day. I got sick and then was busy at work, and I thought initially that her hand was perhaps hurt while playing with building blocks or something. I undertook to get her to the paediatrician at the end of that month (maybe just to please her grandfather). Thank God I called the paediatrician on October 27th and explained the problem with her hand. He called her in for an examination immediately.
During the examination, it showed that there was a definite reflex difference between her left and right hands and arms. He explained that he suspected that it could have to do with the nerves, and I could see the look of concern on his face. He promptly scheduled her for a CT Scan at the Paarl Medi-Clinic. The CT Scan showed a tumour on the right-hand side of her brain.
We were transferred to the Panorama Medi-Clinic the following morning, and Addele had an MRI, which confirmed our worst expectations. From there, we were transferred from the private medical system to the Red Cross Children’s Hospital, which in itself was quite a shock to the system.
According to the professors at Red Cross, the scan showed a huge tumour which seemed like an aggressive mass with growing tentacles. It was thought that there was already some of the tumorous growth in her brain stem. She had very bad swelling, which was treated for over a week with steroids. The statement by the doctors that we could lose our daughter within weeks shattered our world.
On November 10th, 2011, she had major brain surgery, and 95% of the tumour was removed. They could not initially do a biopsy with what they had removed from the membrane, and had to remove the centre of the tumour. What they had to leave was an inoperable bit in the back of her brain as well as what was on the membrane of her brain stem.
The tumour was situated on the right-hand side of her brain, which means they had to operate through the healthy part of her brain, and we were told this might leave her paralysed! The operation lasted for eight hours, and thankfully, the only complication was that the tumour started bleeding profusely. They could rectify this with an in-surgery blood transfusion.
Addele was in the ICU for one day, two days in High Care and one day in the General Ward before we could go home. After a week of torture, the biopsy results finally came.
Addele has Stage 2 Astrocytoma, and not Stage 4 as originally thought. So, almost not cancer, but cancer after all. All the arrangements were made for chemotherapy, and then a post-operation setback occurred. Major swelling on the side of her head caused by the bone they removed not sealing properly. We had to pause all plans for chemotherapy. After three Lumber Punches, the moisture still built up and a shunt had to be inserted plus another port. Once again, a four-hour operation!
We took our Little Fighter home to possibly only start chemotherapy on December 15th.
Addele has not quite regained use of her left hand side completely, but she is so determined to get along, despite the difficulty. She will sail around on her backside, but move, she will! Our OT has faith in complete healing.
Chemotherapy, once a week every week for ten weeks, is now ahead of us, and it is really scary, but we can only trust and believe that it will be smooth sailing from here on. God is faithful, and we can see Him and His Hand in every happening until now; we can’t possibly not believe and have faith in Him for everything which is still ahead for us.
Currently, we have a sense of peace in our hearts where Addele is concerned. Our child was supposed to be dead, but she LIVES! We thank God for every day that she opens her blue eyes and smiles, because it is one more day closer to complete healing.”