Cameron was born on the 10th Aug 2006.He was a happy and very healthy baby and as the youngest of four children he was so loved.He developed perfectly and grew into a very mischievous Toddler who could melt hearts with one of his smiles.
At 11mths old after a bout of sickness,I noticed a purple rash on his legs.We took him to a local small injuries unit as I was worried about meningitis.
They really just didn't have a clue and we were given the choice to go to a bigger Hospital where they discovered that Cameron's white cell count was very high and then they noticed a large lump in his abdomen.
We were just left reeling as we were taken for scans to see what the lump was.They found it was his spleen and we got the impression that they thought our Baby had leukaemia.
I have never felt so afraid in all of my life.I will never forget the look on the Nurses faces but they couldn't be sure.
We were sent the very next day to Birmingham Children's Hospital by Taxi which was just so surreal it was almost as if I was looking in on someone else.
Tests confirmed our Son didn't have Leukaemia but there was an abnormality in his Bone Marrow.The Hospital seemed shocked as hey had been so sure. Cameron had also received blood so had made an amazing recovery and seemed quite well so we were discharged.
The next four months we were back and forwards to the Children's for test after test.Cameron's had the experts scratching their heads .He had developed so well that he didn't fit into any of the diseases they were looking for.Our son was becoming a Medical Mystery.At one point the Hospital even forgot about him and it was only because I phoned that a final test was done.
We had always said that we felt like we were waiting for Cam to get sick again before they would find out hat he had.This happened on the 7th Nov 2007 and I will never forget ringing the Hospital in tears and saying "I'm really scared, my son is very ill ". The Doc asked us to come in the same day as the results had come back.
We were told that our son had a very rare blood disorder called HLH (heamophagacytic lymphohistiocytosis) and to be honest we were relieved as it didn't sound that bad.Our consultant looked at us gravely and said "this is a very serious life threatening illness" we have to admit him now to start chemo in the morning. I have to say at that point my whole world fell apart.For the first time I sobbed in front of my precious little Man.
On admission to the ward I remember being given a Cancer Booklet.I felt very confused and asked the Nurse if he had Cancer.She just said that it wasn't but they were the only books they had and just pulled out a few sheets. I asked for some leaflets on my Sons disease to be handed a computer printout with the bad bits blacked out and told not to search the Internet as I could find incorrect information.I know our consultant had struggled to find this and I suddenly felt even more worried that if they didn't have info then how did they know how to treat it.The Nurses had never heard of it and didn't really see him as "sick" .I was completely on my own in a ward of Mums who I just couldn't relate to as they all had Cancer and my Son didn't so "was not that ill"
Treatment began and our Docs were unsure whether a Bone Marrow Transplant would be needed.It soon became apparent that Cam would need this as initial treatment left him so ill.(We believe that after four Months of testing the disease had already taken its toll). Our older children were tested and all came back as a 100% match.Our Son who was 5 at the time was chosen as he was the same sex. We were so happy and full of hope but it was so difficult knowing that we had to put another one of our Children through an operation to save the other.
Cameron received his new cells on the 29th of Jan after a gruelling course of Chemo and it was only now that people realised how ill he was. All went well till just a few days later when Cameron developed condition called VOD where the liver swells and the body fills with fluid.They could have pretreated but he was so unlikely to get it with such a perfect match.Our son looked so ill and had to be propped up on pillows as everything was pushing up on his lungs.He just escaped going to intensive care but Nurses were shocked that he had made it through.
Things just seemed to get worse after that with Cam developing Graft Versus Host disease of the Skin.He looked like he was being burned badly by the sun as his skin just peeled and he was so red and sore.We had to cover him in a huge tub of Vaseline on a daily basis. He would be constantly itching and struggled to sleep.
Just when we though he was getting past this he developed stomach problems which we now think was GVHD of the Gut.He would scream out in agony as he was in such pain and was on so much morphine it was just heart braking. I felt so helpless as all I could do was hold him but I couldn't stop any of it.
This all went on for a couple of weeks and then we noticed that Cams breathing had become laboured and he was rushed to intensive care and put on life support. Test after test was done to see what was wrong.His lungs were filled with gunk and although they tried everything his machines had to be turned up to the highest levels. We were told that we may lose him and had to tell our Children that their Brother may not be coming home.
Our Docs were amazing and even liaised with an American doc to try an treatment which was his last hope because they just didn't know what else to do.Lack of knowledge of the disease just left them clutching at straws.Sadly it didn't work and on the 22nd of April 2008 our Precious Sons machines were turned off.
I held my Precious Baby Boy in my arms as he took his last breath.
I look back now and know that if they had been more aware of rare illness then my Son may have been saved.We would never have felt alone and would have had the support we needed.
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