BABY BEN'S STORY
5/29/2003 ~ 4/12/2004
When our first baby was born we never imagined that just 6 weeks later we would be delivered the shattering news that our baby boy, Ben had 2 brain tumours and severe hydrocephalus (fluid on the brain caused by the tumour blocking the natural drainage pathway). We had been taking him to the doctors each week since he was born as we were concerned over his constant high pitched cry, some projectile vomiting, a possible seizure and in his 5th week of life - his eyes locked in one direction. After being told each visit he was fine we then took him to a different doctor who advised we take him to the hospital the next day if no improvement was seen. So the next day we went to the Accident and Emergency department of our local hospital. The nurses heard his cry and although there was a room full of people waiting to be seen before us we were seen within 5 minutes. Within hours we were told our precious baby needed to be operated on for hydrocephalus and a shunt would be put in his head to drain the excess fluid, he was whisked away and the operation was done.
The neurosurgeon came to see us after the operation was done to tell us there were also 2 large masses (tumours) in baby Ben's head - the one at the back of his head in his brain stem measured 10cm and the one at the top in a ventricle was approx 4cm. We were told within a few days he would be again operated on as they de-bulked his tumour and did a biopsy to see what type of tumour it was. We were then told it would most likely be a benign tumour, however a week later the results revealed it was a very malignant, aggressive and rare tumour. It was an 'Atypical Rhabdoid Brain Tumour' The next 2 weeks are literally a blur to me as I walked around the hospital looking through teary eyes. The majority of those 2 weeks Ben spent in Intensive Care. Little did we know then that when Ben was 6 months old we would spend 2 months in Intensive Care and all up 7 months of his 10 month life in hospitals.
When we were at home I didn't have the emotional or physical energy to cook - but without us even asking God took care of all that. People we didn't even know delivered meals to our front door. The day they would run out more would just turn up on the front door step. We returned home after Ben's first and second chemo rounds and had 2 meals left in the freezer. That 2nd night home I had the energy to cook for ourselves. God knew to the exact day how long I needed help with meals for. It was the same with our jobs and living costs. We were both able to take time off to be with Ben. So many of our friends and families were a great support to us, and to our surprise so many people who didn't even know us, but had heard about Ben were a help to us also.
When Ben was in hospital my husband and I took turns to sleep in the ward with him at night and during the day when he was well enough to be held one of us would hold him in our arms almost all day as that's where he was happiest (and we were too!) The doctors only expected Ben to live for 3 months. We were blessed to have him in our lives for 10 1/2 months. Through a second opinion we were given the option of chemotherapy, though Ben was still only given a low percentage of the possibily of surviving. After agonising over the decision for 2 weeks, Ben got progressively sicker and we were told to do the chemo now or we would soon lose him. We felt we owed it to Ben to give it a try as we knew of 3 people in similar types of situations whose children were now in remission. So we gave it a go. Although the back tumour did reduce with Chemo to 1cm, Ben then got sick from his lowered immunity due to the chemo and ended up with a virus and pnemonia and in ICU on a ventilator for 2 months. We had never seen him so sick. We were told by the doctors each day 'We could lose him today'. One night as I was leaving Ben in ICU and going back to sleep at Ronald McDonald house I gave God 'permission' to take him home. I prayed "I know he is sick and I don't want to see him suffer. If it is his time take him home, but I really would have liked for him to eat some solid food and to die at home". Ben had been fed by tubes since being diagnosed with the tumour and he was 8 months old and had not had solid foods. Ben recovered from that virus and and got well enough to go home for almost a month and during that time he was able to eat some solid foods! Just for a week or so before he became sick again. God had answered my prayer, showing me how real and ever present he was. Soon Ben became sick again and scans showed his tumours had tripled in size in just 3 short weeks. We had decided not to give Ben any more Chemo as he had almost died from the last round from the virus. We decided to take him home as we were told he only had weeks to live. It turned out to be only 3 days. I had 3 things I wanted to do with Ben - paint his handprints, give out his mother's day presents (as I didn't think he'd make it till mother's day, which he didn't) and have his 1 year old party early. I got to do all these things. He died at his party. He was 10 1/2 months old. The morning of the day Ben died I woke up with a song in my head I'd not heard for over 10 years. It was a children's song we also played at Ben's funeral. It says 'Heaven is a wonderful place, filled with glory and grace. I want to see my Saviours face, cause heaven is a wonderful place.' I think God was warning me he was going to take Ben home that day and that Ben would like it in heaven with no more pain, suffering or sadness. Ben was very sick that morning. He had several seizures overnight and he was struggling to make every effort to breath. I was scared to take a shower as I was worried he might die while I was in there. As I looked at him that morning I knew he wasn't in too much pain as we had medication to take care of that. I prayed a similar prayer to the one I'd prayed months before, saying if God wanted to take him home to do so as I didn't want Ben to have a drawn out painful death, but if he could last until his party and till lunch time that would be good. We had opened all Ben's presents, all the family had arrived. My husband and I had just finished our lunch and we were holding him in our arms as he took his last breath. Every small thing I had asked for I got - Ben being able to eat solid food, do his handprints, give out mother's day presents, have his party, to die at home in my husband's and my arms. He lived until the very hour I'd asked him to survive to. I know Ben is now in a much better place and I know God continues to watch over me and answer prayer everyday as even the little things matter to God!
Tanya and Brian
Sydney, Australia
February 2006
SUNBEAMS
Sunbeams from Heaven are shining today,
Another little angel has gone home to stay.
His life on this earth was short and sweet,
His Father in Heaven was there to meet.
Though I never knew him, there's no doubt
How he spread sunbeams of joy all about
His loved ones are sad, he isn't here,
The memories they hold, oh so dear.
He gave his love to them in comfort and pain
How he held his head high to sustain.
The body that was loaned to him for a while
Is now made anew with a brilliant smile.
We never understand why it happens so,
That such a precious young life has to go.
But he is still with you in spirit bold,
His memory alive through this story told.
Our Heavenly Father always has a plan
It's not up to us to understand,
But to trust and love Him through thick and thin,
He'll help us through the time we're in.
He is resting with Jesus now, free from pain,
And until you can be with him again,
Thank God for the time you had to share,
With the angel, who laughs and sings up there.
Written by Shirley Barr
All Rights Reserved
2006
There have been so many little ones who have gone
to be with Jesus due to cancer and other diseases,
this little poem, I dedicate to "Ben" and to their memory,
"LITTLE SUNBEAMS"
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