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Symptoms It was in October 2006 that we first noticed Bethany's belly button was sticking out. When she was born we were told that she may have an umbilical hernia, which is what we thought this was. Our GP informed us that this was the case, but it had healed, although abnormally, however there was nothing to worry about.
As the weeks passed we began to notice that Bethany's tummy had got bigger, but she was a healthy eater and showed no symptoms of being unwell. She was happy, eating hearty meals, running around and playing. The only issue was her extreme anxiety, particularly around strangers and men. We were told that it was normal for children to experience seperation anxiety, however Bethany's seemed to get worse. In early December 2006 the manager of Bethany's nursery raised concerns over the size of Bethany's tummy at which point we went to see our GP, who also had concerns over the size of her tummy and thought perhaps she had a blocked stool. We were then referred to a Paediatrician at our local hospital. Tests On 21st December 2006, a day that will stay with us forever, we saw a Paediatrician who, by total coincidence, happened to specialise in Oncology. Following initial consultation, an ultrasound and X-Ray, we were given the devastating news that Bethany had a tumour in her tummy and that is was of a considerable size. We were immediately transferred to the Royal Surrey County Hospital, Guildford, where basic tests were carried out to check on her ''general health'', her urine and blood tests were of acceptable levels and we were allowed to go home, only to return at 9am the following day, where she had her first General Anaesthetic for a CT Scan. This day went on went on forever, it was very hard to see her have a General Anaesthetic, little did we realise that this would be one of many! On 23rd December 2006 we made our first visit to The Royal Marsden Hospital, Sutton to meet the Oncologist, Professor Andy Pearson. Due to the time of year, with Christmas day looming, it seemed almost deserted and obviously we were carrying with us every emotion. We sat down with Andy and he explained to us clearly and precisely how things were to proceed from here on. He said "there are two things I want to say to you, this is not your fault, there is nothing you did or could have done to prevent this. Secondly, if you were to have another child, the chances of that child contracting this disease will be the same as for any other child" (not that this was high on our priority list at the time!) We returned home and attempted to digest what we had been told and just what was happening, but of course at this time, you just can't. On Boxing Day we were admitted to St. Georges Hospital, Tooting, where the following day we were scheduled to have a biopsy of the tumour, bone marrow aspirate and hickman line fitted. Following the procedures we were able to return home and have a few days to try and digest everything that had happened over the past week. Our next appointment was at the Royal Marsden on 4th January for Bethany to receive an mIBG injection, a substance that is taken up by neuroblastoma cells when injected into the body, attaching a small amount of radioactive iodine to the mIBG enables the tumours to be seen by radiation scanner. This day was to be one of the most daunting days so far, being our first visit to the day care unit when open and very busy. We will never forget walking in and seeing all these really ill children, with no hair, very bad skin, tubes out of their noses and some with visible lumps on their bodies. It was all very scary, but just as noticeable was how most children were happily playing, seeming not to have a care in the world.
We were at the hospital for most of the day, Bethany had to have a cannula fitted, which wasn’t very pleasant. They also took blood cultures as Bethany’s Hickman line had some gungy stuff coming out of it. Before we left to go home we were told that the blood results weren’t very good and she would need a blood transfusion the next day, before she went for yet another general anaesthetic for the mIBG scan. We didn’t understand, “A Blood Transfusion”, but why!!! Little did we realise that this would become a common occurrence over the coming weeks and months. Obviously the whole day was an overload of information, and we also didn’t really have any idea what was going on.
Other parents and children seemed to be taking everything in their stride and were even managing to laugh!!! We just couldn’t believe that, but as you travel along your journey you realise that this is the best way to be. We went home and just couldn’t believe what we had witnessed that day. Our healthy, beautiful looking daughter was going to end up looking like all the other children we had seen, we just couldn’t comprehend it.
We returned to the Marsden the following day for Bethany to receive her blood transfusion before she went for her scan. A new day, a new perspective, the day before was such a shock we just realised that we had to get on with it.
Bethany went for her scan that afternoon. Just before we were about to go home one of the consultants came up to us, she had quickly looked at her scan results and said that it obviously showed a large tumour in her tummy which was cancerous, and also some spots on her neck, but until she was able to study this further she wasn’t sure exactly what the diagnosis was. A doctor then arrived to inform us Bethany’s blood culture results showed an infection in her Hickman line and we would need to go directly to our local hospital, The Royal Surrey in Guildford for her to start a long course of intra-venous antibiotics. This was to be our first extended stay in hospital, in total, eight days.
We went straight from The Royal Surrey back to the Marsden on January 12th to start her first course of chemotherapy, so we had no chance to have a few days at home before we started. We’ll never forget the journey there, scared and beside ourselves that our little one was about to start this aggressive treatment.
We arrived at the hospital and were given a tour around the ward and Parents accommodation above. We just couldn’t concentrate on anything....”Here is the bathroom, and bla, bla bla...” It was just a jumble of words and once again we found ourselves looking at other parents wandering around looking like they were getting on with normal life, We thought, “This isn’t normal life, why aren’t you all crying!!”. But, very quickly, this actually does become normal life, and you DO actually find things to laugh about, and learn to get on with it, just like the other Parents you had watched previously in disbelief.
Diagnosis Very quickly after Bethany’s first course of treatment we had another meeting with Professor Pearson to discuss Bethany’s actual diagnosis. During the period before this we had been told parts of her diagnosis, but not the exact status of her disease. Bethany was diagnosed with Stage IV Neuroblastoma. This is the highest level. Bethany had wide spread disease when she was diagnosed, the main Neuroblastoma tumour was very large and was attached to her left adrenal gland; it had also spread to her lymphatic glands in her neck. We had spent the last few weeks praying and hoping that it hadn’t spread anywhere else as this would have meant her treatment plan wouldn’t have been so long. We had now been given the worst news and to a certain extent we just felt numb, and knew we just had to get on with it, nothing was going to change.
We spent the first 8 months of this year in and out of various hospitals across Surrey and London. Bethany has undergone various treatments. |
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