My little boy was born on 25th February 2014. He was 10 days late and it was a very, very long delivery. But once he was here I remember feeling such overwhelming love for him. He was my blessing and gift. The best thing to ever happen to me. He still is. The first year of his life was very normal. We were adapting to the challenge of being new parents. Lewis was such a happy boy. As it was coming up to his first birthday, I remember feeling like it was all feeling normal. I had been more capable than I thought and was loving every minute with my little boy. Then at 15 months old we suddenly noticed a massive lump on his forehead above his right eye. It had no bruising. Was very pronounce and seemed to go bigger and then smaller and bigger again. I waited a week and as it wasn’t going away or looking like a bump. And I was sure he had never fallen. I took him to AnE to be looked at. We were sent from one hospital to another very late at night. The doctor I saw that first night was very rude. She kept asking me over and over what i had done every day with him. I told her everything again and again. Lewis had not fallen or banged his head or anything. She kept trying to say it was just a bump and my fault for not watching him. I definitly had watched him and he had not banged any part of his body. I finally said it’s been there a week would there be bruising if he had banged it. She said yes. To which I said there isn’t one. She fobbed me off and sent is home. I am so glad I never listened to her and just ignored it. The next day i went to my local doctors and the doctor looked at Lewis. He was very concerned about him. He had him referred to pediactrics. And so began Lewis journey into finding out the truth. A few hospital and doctors trips later and tests. And Lewis was finally sent for an m.r.i scan. This day was the worst. Only 15 month old and it took them a long while to get a canula in. Was so awful watching him scream in fear and pain. After the m.r.I we waited patiently and anxiously for the news. At first we were told Lewis may have a brain tumor. We were referred to Manchester children’s hospital straight away. I remember holding Lewis close to me and years running down my face at the thought that we might lose him. The next day we set off to Manchester. And we met Lewis wonderful consultant Dr Penn. Someone who would come to mean alot to Lewis and us. It was arranged that lewis would need to have a biopsy done. I think it was the beginning of June when this was done. Lewis screamed the place down while they were trying to get a canula in. He was put to sleep and taken to theatre. He was such a brave boy and still gave us a huge smile everyday, even though his eye was closed up and he looked very bruised from having the biopsy done for a few days. The week after, we went to see doctor penn for the results. It turned out that lewis had a rare blood cancer called langerhans cell histiocytosis. His white cells were growing too rapidly in one spot, causing the growth on his skull. It was also behind his eye socket. If left untreated, it would have continued to get bigger and would have caused problems with his pipituary gland, and possibly his eye sight. So a plan was made for Lewis to have 12 months worth of chemotherapy and steroids treatment to help fight this disease. It was such an unexpected battle to face. We never imagined that our little boy would be ill one day like this and have to go through such rough times for someone so little. Lewis had to have a portacath fitted into his body before treatment could be started. He spent a few days in hospital while he had this done. There is so much to remember. But 15 months old and Lewis begun his weekly chemotherapy. He also had steroids 3 times a day, anti sickness, antibiotics every weekend. And antacid. Medicines and medicines and hospitals and injections and lines and thumb  prick tests were his life now. His immune system became very low. And he became at risk of infections. If he had a temperature he was straight in hospital for 5 days on antibiotics. Watching Lewis have chemo was so hard. He screamed and became so anxious. And it was so upsetting watching him be so scared and upset. But through all this, he was the sweetest little boy. He would turn to the nurse’s after and say thank you. He would be all smiles and playing with the other kids. We as parents had never been hit with something so hard. We were just trying to fight and hold on but falling apart inside. And we are still dealing with effects of all the stress and trauma. Lewis was very tired during all his treatment. His appetite would be up and down and he would pick up bugs do easily, no matter how careful we were. Eventually the chemo treatment became every 3 weeks. Lewis ended up Ill and in hospital for his 2nd birthday. And the staff at the hospital were so kind and gave him a couple of presents. Time went on and eventually it was time for the treatment course to end and to see a scan. The leison they were treating was gone but there was a new one there just 1 cm big. Our heart sank. So they decided to leave him off treatment for 3 months and do another x Ray. Even though he didn’t have chemo, he still had his portacath in which needed to be flushed every month at our house. Lewis screams were awful. We were blessed by a charity called Lenox fund. And they arranged for us to go on holiday to mersea island for 7 night’s in a caravan. It was so amazing and just what we needed. A break from all hospital life and worries. On that holiday, we took Lewis to Colchester zoo. Lewis has a big love for African animals. And there he got to see elephants and rhinos and zebras and giraffes and warthogs and hyenas. All together. And his face just lit up.  He got to feed the elephants and giraffes too. Every day since then he still asks to go back. For 2 years we have been worrying so much about our little boy. We will find ourselves checking his temperature so many times in the night. When we try and watch tv at night, it will take us hours to watch one hour episode because we keep going to check on him. We carry alcohol gel everywhere and use it like it is Sun cream. We will be out and if we hear anyone coughing or sneezing,  we immediately want to take Lewis away. If someone comes up to me who knows us well and suddenly says  oh I was sick last night, I immediately want to slap them for even thinking of coming near us with a bug. In time this may pass and we may start to relax. Lewis has just turned 3 and even he has started telling me “don’t worry about me mummy” about a month or so ago Lewis had his portacath out. Then on 23rd february we took Lewis for his x Ray and to see his consultant. We got the amazing news that the lump was gone. Lewis is now in remission. He will still have check ups and scans. But hearing that for now it has gone! Was amazing! Our little warrior has finally come through it. He can start a full life. He can run around and be a boy without me panicking. Lewis got this brave bear for being brave. And he truely deserves it. He has been through so much trauma for someone so little. And yet he smiles like sunshine. He is so caring and loving. Since being off the chemo his energy has come back. And he has grown so much. We are gonna make sure that this year is a wonderful year for him. It’s time to have some fun and really live.

Motherwolf (this is my little cub)

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2 thoughts on “My brave boy. Warrior of langerhans cell histiocytosis.

  1. So glad to hear that your son is in remission. Your story is very familiar as my nephew has a neuro-degenerative form of LCH. My sister and I are currently in training to run the York marathon for Histio UK – hopefully with research this horrible disease can be beaten for good.

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