Jed's Story

17th March 2009

Jed’s story:

Looking after your tomorrow becomes impossible when you hear the words, CANCER followed by we don’t have a cure, your son has two years to live, and it is BRAIN CANCER. Brain tumours can be benign or malignant. Surprisingly they are the most common tumours in childhood. Yet I have never heard of or come into contact with a child who has one. Cancer was what old people who smoked too much got!
I’m a single mom who lives for her precious, adorable baby boy. Jed Brady Thomas/Suckling was born on the 3rd of November 2004 after 18 hours of labour I saw the most beautiful child I have ever seen in my life. He was so healthy and scored 10 out of 10 for his birth test. I was proud. I counted 10 toes and 10 fingers and smiled at how lucky and blessed I was to have such a healthy little boy!
In August 2008, Jed started showing signs of being slightly ill. He had headaches, he vomited a few times over a period of about a month and he was a little moody. He is normally a gentle, loving little guy and I couldn’t understand his sudden outbursts and temper tantrums. I was told it was normal. Jed’s appetite also got worse, he hardly ate anything and I would worry all day. Other mom’s would tell me to make a game of eating. I was obsessed with getting him to eat. I took him to several paediatricians and doctors and they all seemed to come to the same conclusion; Jed had allergies and they even did an x-ray and confirmed his sinus’ were inflamed and the best treatment was Neurofin for pain and some allergy medication. However, the symptoms didn’t go away and night after night I rushed him to hospital to be told NOTHING was wrong. My gut told me it wasn’t true.
His dad insisted that we do a CT scan and that was when we realised Jed had a brain tumour. It was large but they could operate. I was shocked and could physically feel my heart pounding in my chest. I wanted to scream, run, hide but knew I had to be strong for Jed. The doctors and neurosurgeon put Jed onto corizone to reduce the swelling and prep him for the operation to remove the growth from his Cerebellar Hemisphere. The day before the operation Jed’s hands and leg were shaking but other than that he was fine. He was building puzzles and running up and down the ward like any other healthy child. At night he would roll around in our little hospital bed but I’d sing to him or tell him a story and he would drift off to sleep again in my arms.
The 9 hour wait for the surgery to end was the longest 9 hours of my life. I stood outside the theatre for the whole night hours. I refused to eat, drink or move until I could see my baby was okay. When he came out of theatre I believed the worst fears I’d ever had were over and life could return to normal. The surgeon told us that the tumour was benign and he had removed all of it. The surgeon become my hero, I could almost see a halo around his head...We had spent 4 long weeks in hospital and when Jed had fully recovered we went home to Pietemaritzburg. Jed stayed home with a nanny and an aupair; I decided to home school him for 6 months to ensure that he had fully recovered. I returned to work.
On the 9 th of January 2009 (Friday morning) Jed woke up early so we decided to build a puzzle quick before I went off to work. He built it while I showered and got dressed. I came to have a look and prize him. I said, “wow that is gorgeous my baby, clap hands for Jeddy!”.... my heart sank Jed’s hands could not meet, he looked like a spastic child. I asked him to run to the kitchen and get some water, and he hopped. He looked at me and said “mama I’m wiggling in my leg and arm”. I rushed from Pietermaritzburg back to Johanessburg with tears flowing down my cheeks the whole journey back. I knew the monster tumour was back. I called the nanny and then the aupair, both of them assured me that the whole day on Thursday he had been fine. The aupair even mentioned they had enjoyed a game of soccer and Jed was fine, bouncing around and having fun.
An emergency MRI was done on the Saturday and on Tuesday the 13th of January 2009 the tumour was removed. The pathology report showed a Myxoid tumour that was behaving like cancer. How the hell do you behave like cancer? Let me tell you, you grow faster than any normal cell. You take over, you invade and you cause pain that rips into your soul of your loved ones! You are an intruder, unwelcome and hated! Pain that is physical ripped into my entire body. I had a nervous breakdown that day and was prescribed anti depressants to relieve the anxiety. No pill could take this pain away but I knew this was not about me, it was about Jed and Jed needed me to fight at his side day and night.
On the 12th of February 2009 a follow up MRI was done and I was told that the tumour was back in 3 nods and even more aggressive than the doctors could comprehend. I was petrified. I heard the words rare, Jed has about two years, I’m sorry, and I wish I could do something to ease your pain. I cried loudly and uncontrolled in the surgeons rooms. I wanted to hit him as my body filled with anger. Where was that halo now!!! I wanted to know WHY he had not got all the tumour out. I trusted him to do that, get it out and save my boy! He explained that it was like slicing bread if you leave one crumb the tumour comes back.
No one can understand the hurt and pain a mother feels when she faces her worst fear. I can’t live without Jed, he is my sunrise and my sunset. He is reason I wake up, I work and he is all I need to get me through any day or night. I have slept with Jed in my arms since the day he was born. Now I lay awake praying with all I have inside of me and begging God not to take my son.
Chemo and radiotherapy have started and continue for the next 5 weeks. Jed has two big bold patches on his head from the radiation and each time I look at those patches of missing curls, I feel the hurt that only a mother would understand. My love for Jed is so intense, I have prayed many nights for the Lord to give me the cancer. My life means so little in the bigger picture, at 34 I have had my chance to live and make a few mistakes. At four years old Jed is perfect, he lives to kick his soccer ball and play Ben10 or Ninja Turtles.
Through painful headaches, nose bleeds, surgery, chemo and radiation my baby does not complain, he is brave and the only superhero I have ever met. He is stronger than any man I have met and is beyond amazing.
I’m sharing my story to ask for medical support, guidance or just a loving e-mail to get me through the dark days. I wish there was a support group of mommy’s who understood my pain. I can’t attend a meeting or meet for coffee. Jed and I live in isolation as he goes through his treatment. I have resigned from my job and now look after him 24 hours a day. We live at the home of his dad (my ex of about three years) who pays for all our day to day expenses. His love for his son and made it easy for him to open his home to me and Jed.
With love
Bonni
(aka Jed’s mommy)