New Facebook page now Leo with all updates about Leos progress- Leo the Lions fight for survival against PNET

Hello,

I am getting a bit drained writing the blog so I have decided to set up a FB page and keep it updated constantly with photos and news about Leos condition and battle. It is a bit easier updating it. If you would like to read about Leos Full Journey from September until now you can still read this on the www.leosjourney.wordpress.com page.

Please share this new facebook page with as many people as you can to raise awareness about this condition and for parents to be conscious of the signs of brain tumours in children. Thank You. Karen, Jorge and Leo xx

https://www.facebook.com/thelionsfight/

fight

Wednesday 11th November 2015- The conclusion of today after a bit of a scare today was that in 6 months of chemo, Leo either survives or doesn´t

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Now it does seem like it is getting harder and harder to write the blog….it just feels like things are getting harder and just becoming worse and worse all the time. I feel like actually being sick now.

This morning the doctors came round and checked Leos head, they thought the swelling had gone down but still not as much as they wanted. The liquid wasn´t all absorbing like it should be. They decided to keep Leo nil by mouth incase he needed another minor operation to put another different drain in his head to help to drain the fluid accumulated between the skull and skin. About midday they checked it again and were still deciding, they then checked Leos temperature and a fever had spiked…it was just 38.4 not a crazy fever but the doctor was worrried that his head had got infected. He said that as he had 2 operations and the wound was not drying out or healed it could have got infected.

I asked him what would happen if it was infected, he told me there are two options depending on how bad the infection is. One option was to cut open the whole head where it had been cut before and open it and clean inside, this was classified as another big brain operation, the second option was to give Leo antiobiotics to kill the infection.

We had to wait 2 hours for the results….back to the crappy waiting game again….all I could think was if his head was infected that it could become septicaemia again and it would be like a repeat of what happened in Spain…I really could not go through all that again.

After a couple of hours the doctor came back and said nearly all but one of the results was clear from infection, then after a while more he came back and said it was all clear…..pheeewww we could breath again. He said they had decided not to do the other minor operation to put a different drain on Leos head yet. Finally Leo could eat and drink again!

I feel like I am going crazy with all the waiting…..it feels like for the last 2.5 months everything is a waiting game….and 1 hour feels like 5 when waiting for test results.

I popped into the city for a couple of hours with Maria to clear my head a bit as I really cannot take the pressure in the hospital and it is so so sad to see other really sick kids walking around or being pushed around.

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I treated Leo and got him the same Ana doll as Sofia has as he loves Frozen so much and a buzz lightyear toy! He loved them!

While we were in the city the consultant oncologist came by unexpectedly….I had wanted to be there when she came but she will come back on Friday to speak with us again.

Jorge spoke with her and she basically said the survival rate of Leos type of cancer is 1/5- basically 20%.

She did not think it looked good at all. She thinks that he may never get the movement back in his right side which was a big blow as that would mean that he could never walk again……I do not believe this as we see progress with his movement everyday and so do the physio woman we had in Spain. That is something that will come in time but now we cannot worry about that.

The oncology team have made a treatment plan for Leo, they are also getting a second opinion.

Basically the treatment is chemotherapy using a combination of 4 drugs. The chemo has to be more aggressive than the tumour to kill it all.

Leo could begin chemo as early as next week. He will have 3 cycles of intensive chemotherapy with 4 drugs over 4 days every 3 weeks followed by ´high dose´ of chemo requiring a stay of a few weeks in hospital.

The survival rate for this tumour is based on 6 months of intensive treatment which was another big big blow…..only 6 months…

Jorge asked the oncologist if Leo did not survive then how would he die and they said it would be from the chemo because it has to be that aggressive.

I feel like we are climbing a mountain and we are never ever going to reach the top of it….

She also said that even after remission the tumour could come back in a few years…..I do not think Leo will be ever free from this nightmare ever in his life.

So in conclusion in the next 6 months Leo could beat the odds as he has been doing and we could be celebrating or we could have to say goodbye to our little Lion for good and admitting defeat.

We are going to stay here for the treatment we cannot risk going anywhere else, I was investigating proton therapy in the USA but the area of the tumour is too big and it would have the same effect as radio. We are in the best place for the treatment and the hospital is also asking another big hospital for another second opinion to confirm it is the right treatment to follow. We have a scary information sheet about the chemo and side effects but I am trying not to really think about all of them. After the first round of chemo they will also try to harvest some of Leos stem cells for later on.

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Life is so so so cruel….I almost feel scared to wake up each day now cos I do not know what news we will have, what will happen. I think I have aged 10 years in 2 months! I need to work out what to do with my baby girl also….:(

And to those people who did say bad stuff about Leo, caused our family a hell of a lot more unnecessary stress with certain issues recently and at the beginning, and racist comments under secretive names. I hope you do feel very bad and guilty now! I really hate myself for the lack of patience I had for Leo over the last year due to stress caused by a few people, and people who got involved in things that were nothing do to with them! Leo could be dead in 6 months now and I feel like I did not give him the best time in the last year due to this unecessary stress and I will never ever forgive myself for that. I am so so angry and upset I just feel like sick in the stomach that my boy could be taken away from me so soon.  We went through this before where we thought he had hours to live and it was the worst day of my life…and now have to go through it again. I need to work on turning all of that anger into positive energy for the next 6 months and dedicate it all to my little lion….Leo has to be number one now…I am not going to wreck what could be the last 6 months of his life by letting these type of people still get to me anymore. Pfffttt….got some anger out there! lol.

Now I have to go through the next few months to watch Leo get sicker and sicker….his hair fall out, etc….in and out of hospital and I do not know if I can see him go through more pain after he has suffered so much already. I hope when my head clears a little bit that I will be able to transmit positive energy to Leo because he needs all the love, prayers and care in the world for the next few months.

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Not loads of happy photos today but I will still try to keep to my pact to get a photo of Leo smiling everyday no matter what happens.

Tuesday 10th November 2015- Results are in and its not good news

So leos biopsy results have concluded that the tumours were PNET tumores. The sample from spain also arrived today in the post and it was the same,  it was just misdiagnosed in Spain.

It is malignant so it is 100% sure now my baby boy has cancer.

The type of tumour is very agressive and survival rate of under 3 year olds is not good…feels like hurdle after hurdle. ..with no light anymore….he has suffered too much already and it looks like it’s only the beginning.

Leo does not deserve to suffer this pain at all,  why doesn’t this type of shit happened  to bad people not good people! Need to get a punch bag I think.

Tomorrow hopefully we will speak to oncologist to come up with a plan. Then more big decisions have to be made.

Sorry I cannot write more today. .. feeling lost, confused asking myself why, why, upset and angry.  Xx

Sunday 8th & Monday 9th November 2015- Hoping this new drainage system for Leos head works!

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Yesterday was a happy day for the little lion as he was flooded with cards,presents and visitors and he even got more ice cream which kept him very happy.

My brother, sister and Karl were here yesterday and leo was really loving all of the attention. He still looked like the same cheeky Leo except sitting down in the pram and not running riot everywhere.

I am actually lost for words at how good Leo is doing since the operation considering the second operation should have been more dangerous. I saw a video of Leo a few days after the operation in Spain and it does not even look like Leo, his pupils were in the corner of his eyes, yellow skin colour, and weird convulsion movements with his left hand. It really is incredible the difference now….nobody will ever know if things could have been different had we been here in the UK for the first operation but at the end of the day the doctors in Spain saved Leos life and they are willing to help us with whatever we need now…we can only focus on the future now no more of the past.

Yesterday Leos head was still leaking so I think now he had 3 pressure bandages as he kept pulling them off! He did it in like a split second! He is still such a cheeky little monkey!

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He ate really well yesterday, he had a pureed roast chicken dinner. He had not been eating too well as he was constipated but they gave him some laxatives and they seemed to do the job! J

I told a doctor recently that I had been reading a lot of stuff on the net about the tumours and cancer and he told me that I should just really look at charity websites as they are more accurate, he said that people tend to post blogs and comments when they have had a negative experience….which I guess was also my case when I began the blog because I did feel angry/upset and a bit let down but now I trust this hospital with Leos life in their hands more than anyone else… but now it has changed to more positive and I cannot believe there are nearly 2000 viewers each day on the blog so I have to continue writing it now..and I can just pray it will be a story with a very very happy ending…when it eventually finishes, rather sooner than later.

I heard that the event at the Bistro was a huge success and again I have to say it that we were so overwelmed at the support from so many people and the amount of money raised was incredible, more than we could have ever imagined. Sofia was very happy with the prizes she won! I will try to find a variety of photos to put up soon.

This hard journey in my life has really taught me about that things that really matter in life and those are the things worth fighting for and making sacrifices for. I think that one of the reasons we have been put on this journey is to come to this realization, and to meet the most amazing people and make new friends who we know will be friends for life no matter what, people who  will be there to support us through thick and thin. (you all know who you are ). I threw an olive branch out to a couple of people and the branch was quite obviously not accepted…the branch should have really been thrown the other way anyway .… but again I have realized that these little things in the past were not important…. maybe these people obviously have not gone through a life experience yet or maybe never will that will make them realize that silly /petty things really do not matter anymore. (I would never wish this pain upon my worst enemy).  As long as the ones you love and cherish are happy and healthy then you have everything complete in your life…money is not even important. I would gladly live on the streets without a penny to my name to have to go through all of this..even 1% of it again.  We also want people to do things to support Leo because it is their heart that tells them to, and they really feel for Leo suffering all of this pain and they want to help him recover and also help us through this, if is it for any other motive or purpose then we would prefer not to have it. My family and our good friends old and new are strong enough to take on an army at the moment…lol. Ok rant over now! Lol. Hormones and emotions all over the place at the moment—been a long ass couple of months and there is no light! Thinking it is really starting to take its tether on me now. I really need a sign that says ´approach with caution´at the moment….do not cross me! Lol.

Last night Leos pulse rate was very low, the nurse was quite worried so she called the doctor. The doctor ordered a CT Scan to be on the safe side.

She said there was not a lot of difference since the last scan, but they prefered for Leo to fast until the morning just in case he needed surgery. In the morning the doctors came round and said that as Leos fluid in his head was not absorbing so they wanted to put in an external drain in him.

Poor Leo was hungry and thirsty and did not get taken into the operation until 1.30pm. The whole procedure was about 1.5 hours in total. Leo came back very groggy and grumpy. The surgeon said it was successful. Poor Leo he had more anaestetics in the last 2 months than some people have in their whole life. Eventually he perked up and was smiling but he was trying to constantly pull all the tubes and drain out of him. We tried to tie a nappy around his arm and put tape on but he used his teeth and pulled it off and then

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Hopefully tomorrow Leo´s pathology report and a small sample of the tumour from Spain will arrive and it will help them to speed up things down here and have a more accurate diagnosis!

The day brightened up at the end with Leo smiling and some good friends coming to visit us with a beautiful card and gift!! Thank you so much…..and my doctor friend Maria arrived to visit us!!

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Saturday 7th November 2015 – 3 more sleeps until we find out what the future hold for our baby boy! – Sorry for delay in posting! :)

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Poor Jorge had been awake with Leo since 4am! And Jorge was still struck down with man flu! I stayed at the Mcdonald house with Roz. It was pouring it down this morning! Hopefully I wont end up getting struck down with the flu here also!

This morning a doctor came in and checked in on Leo, he explained a bit more about a few things so friendly and helpful with all of the questions and doubts I had. I think the people that work in this hospital are some of the most friendly people I have ever met, they have such a difficult demanding job but still have time to speak to you and spend time with you to ensure you understand everything well, they have so much patience. I do not think we could have chosen a better hospital to come to.

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While I was lying down with Leo I noticed a lot of fluid leaking out onto the pillow from Leos head….the nurse called the doctor who arrived so quickly. Leo´s left side of his head had got bigger and bigger over the last 24 hours, it was due to cells producing some fluid when there is more space. The doctor drained Leos head by putting a tube into his head and sucking out the fluid, it looks a redish colour and there was loads of it. Apparently it was totally normal and Leo probably had it more as he had two brain operations so the head was softer.  After the doctor removed the liquid Leo seemed a lot more relaxed, maybe he was in pain from it. The doctor put on another bandage to put pressure on the head. We turned away for literally a second and Leo pulled it off his head! The doctor put it back on, and Leo did the same again…..the nurse said it wasn´t common for kids to really pull it off so many times as it was not common for them to be so active so soon after a brain operation!! Only Leo the Lion! Lol. Eventually the nurse came up with a new plan to put the bandage under Leo´s neck! He was starting to look more and more like a mummy.

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Leo was a happy chappy with his first ice lolly today since the operation! And he was very very content with it, we got some huge smiles from him. And he was allowed an ice cream which made his day!

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We were also allowed to take Leo for a walk around the ward and we took him to the play area which he really enjoyed.

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Leo loved spending lots of time with his Aunty Roz today, so a very enjoyable day for the little lion! 🙂

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The oncologist came again today and said that it might be a case of Leos being discharged for a little bit and then admitted again into the chemotherapy until once a treatment plan was agreed.

A fairly relaxed day all in all! We need to just make the most of and enjoy this time with Leo until we find out about his plan for the chemotherapy or radiotherapy.

I got a lovely photo from the Lion Club which made me smile!  I had to share it with you all.

lion club

And today this beautiful gift arrived to our house in Spain! It is so touching and means so much. Thank You.

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Today the event of the Love, Play and Have a good day for Leo was an amazing success! They managed to raise 1100gbp in 3 hours which is incredible!!!! Thank you so much to all who were involved.

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It touches me so much the amazing kind messages from strangers, and these events taking place all for my little boy, I want you all to know how much we all appreciate it all and I can promise when Leo is better that he will be thanking you all in person!

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Today (Sunday) is the event at The Bistro in Pueblo Laguna, so if you have an afternoon free pop on down there!

bistro

Friday 6th November 2015- 1 Month from today I hope my baby boy is happy and healthy and celebrating his 3rd Birthday!

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Leo was so happy and content this morning, he was nil by mouth since midnight so he was quite a bit hungry.

At about 11.30am the surgeons took Leo the the theatre, Jorge held him when they put him to sleep and the operation and MRI was the planned to be 2 hours minimum.

My sister arrived here from London and we went for a walk and we got some food to kill the waiting time! After about 2.5hours Leo was back, we had been warned that he would be very sleepy and grouchy anaestetic but he was full of beans and smiling away! Again like nothing had happened.

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I looked at the hickman line that he had put in him and it was a lot bigger than I expected, we had to put a shirt on Leo to stop him grabbing it and pulling it out. It was such a scary feeling that this could be inside him for a whole year. If the nurses needed to give him medication or extract bloods they could just use this to do those jobs as well as to give him the chemotheraphy doses. The surgeon said it is less painful than being poked every month for the chemo so it was really a no brainer.

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I am worried about what happens if Leo pulls it, the surgeon was finding out if Leo can swim with it in him also. I will be, scared giving him a bath, shower etc…..it is so much to take in and Leo just keeps suffering all the time which feels like its on a daily basis at the moment. I wish I could take all of the pain away from him of even 1% of it.

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When I moved Leo today some fluid came out onto my arm from his head, we called the doctors who put a new bandage on his head…I think it lasted for  a whole hour until Leo managed to pull it off again…..he hates having anything attached to him or put on his head. It must be so frustating for him. Later on the nurse put another one on his head, fingers crossed he keeps this new one on for the night.

The head neurosurgeon came in again today to check on Leo which was really nice, he was still happy with all of the progress and I told him that I could not thank him enough for what he has done for Leo.

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The oncologist visited us, he introduced himself and told us he will speak to us on Tuesday, Apparently he is supposed to be the best oncologist in Europe so Leo is in safe hands!

It feels like we have been going through all of this pain and distress for years, but in reality it was 2 months ago today that Leo had his first operation. One month from today 6th December I pray that Leo will be happily celebrating his 3rd birthday with friends and family!

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I was talking to my sister tonight and I still cannot believe or even say the words that ´My son has cancer´……I never dreamed of ever having to say those words especially as my son is not even 3 years old.

40Nearly forgot!! Poor Jorge has got sick from the cold damp English weather!

I made him put a surgical mask on so he doesn´t pass on germs to Leo! lol

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Thursday 5th November 2015- We could not be prouder to call Leo the Lion our son.

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I really thought it would be a long long long time before I said that there was good news and that Leo had a good day but today it was.

Although the little Lion was awake from about 5am screaming and crying for about 3 hours it did get better after that, I think he was in pain on his head. The doctors gave him some morphin and he calmed down a bit.

He was quite content during the day just a little bit aggitated and frustrated as normal as he could not do what he wanted to do. He was moving his head around although there was still inflammation from the operation. He was a bit stressed with the bandage on the head so he pulled it off! The surgeon decided to use the same cut as the first operation but with disolvable stitches. It looked quite good considering two major operations in 2 months.

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The neurosurgeon came in today to speak to us. He said that they already had the results from Leos lumbar puncture test and it was all clear which means there are no microscopic cancer cells in any other parts of his body which is wonderful news as if there was I think it would have been ´game over´ but its not! 🙂

The neurosurgeon said that the tumour is definetly not an immature teratoma tumour but they were stilll working on what it was, the pathologist confirmed again that it was definetly maligant. Fingers crossed it was not the bad Teratoid or rhabdoid tumour as survival rate is not good at all, but Leo keeps on beating the odds anyway! The surgeon said there was an idea it could be  another type. We need to wait until Tuesday to fine out those results. Another long ass wait!

Whatever the tumour is the fact that Leo has cancer still remains the same, he will need chemotheraphy as soon as possible to ensure another tumour does not grow. Tomorrow Leo will have another MRI scan just to double check everything is clear and then he will have a hickman line but inside him which is basically a tube inside his body where the doctors can extract blood and give him the chemotheraphy through. It will be less painful for him than being poked and prodded each time. It is a minor operation with minimal risks but while they have him asleep for the MRI they said they may as well do this so he could possibly begin chemo as early as next week.

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The doctor said that we can decide about the chemo whether to continue here or in Spain so we have some decisions to make but it depends on the results on Tuesday anyway. He also said that when people are having chemo that even if Leo gets the flu or some little infection he has to be admitted into hospital! It is very very scary but we do not have a choose if we want him to live. He might have one intense chemo session a month for possibly a year then after radiotherapy.

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Then the anaethetist came in and I had to sign consent forms for Leo for the local anaethestic tomorrow and then the surgeon came in and explained about the line they will put in and I had to sign another consent paper!  So no food or drink for Leo again tonight after 12pm! . Tomorrow I am guessing he will be really sleepy again all day.

Leo ate some weetabix and had a few giggles and smiles! It was as if nothing had happened to him yesterday! He was even asking for ice cream. Lol

Today was a good day! We are so so proud of Leo, and so proud to call him our baby boy. There are many many people that would have given up by now and thought sod this…..but not the little Lion….he just keeps going and going and fighting and fighting!

And some more good news today! Some really good friends who use to live by us in Spain are driving 4 hours here to see us on Monday!! We have not seen them in years! I am so looking forward to it. And also one residente doctor from Almeria Hospital who became more like a friend is arriving on Monday night to stay here and visit us all for 3 days!

The Little lion fell chilling in his bed now! So mummy and daddy are getting some chilling out time!

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