Wednesday 4th November 2015- Operation very successful! Leo the Lion has an incredible will to live despite everything! He still keeps on putting 200% into all the battles!

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This time last week I thought I was going to the hospital to pick up a clear scan of Leos and pick up discharge papers..I never would have imagined that a week later we would be in a different country, Leo would be undergoing another major brain surgery operation by one of the nest neurosurgeons in Europe to remove another big tumour! Mind you I could never ever have imagined how the last 2 months of my life would have been….it has been so surreal and it is still not over yet.

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Last night a nurse tried to take some bloods from Leo it was so hard as he has been poken and prodded so many times that they were running out of veins to really use but eventually they managed to find one to extract the blood.

This morning we relaxed and enjoyed the time with Leo. We were told he would go into surgery at about 11 or 12pm so we wanted to make the most of the time with him. We took him for a bit to the play area. Leo was acting a bit strange this morning and he was constantly trying to put his fingers down his throat, and then he was biting his left arm and then crying as it hurt, he even made teeth marks in his arm. It was very strange. I asked the neurosurgeon about this and he said it could be due to the pressure caused by the tumour on the brain which is causing these weird actions.

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Leo was taken in at about 11.30am this morning, and I carried him down to the theatre room where I got to hold him while they gave him the sleeping gas. It was really sad and as I said bye to him and whispered in his ear that he has to continue fighting and being strong, there was a small part of me that wondered if that would be the last time I saw him alive. I managed to hold it all together. We were told the operation would take a minimum of 5 hours.

We decided to go into Liverpool city and have a walk to clear our heads and get some lunch as we needed to be strong for Leo! It was sad to see people pushing their kids around, and there were people singing and dancing on the street and I said to Jorge that all I wish we were pushing Leo through the streets he would have loved all the entertainment.

We got back to the hospital after about 4 hours and there was still no news. About an hour later the nurse said he was out of the operation and they were doing another scan and then he should be in recovery. About 1.5 hours passed and we were getting a bit worried….there was no more news yet.

About half hour later the neurosurgeon came to talk to us, he said the operation went as well as it could have. They thought they removed all of the tumour but after the next scan they spotted another part which was hiding so they had to go back in and remove that. Thank god for the Intra MRI scan which they have here and nowhere else, otherwise that part of the tumour would have been left. So all of the tumour got removed and Leo got his clear scan! He needed a blood transfusion but that was all fine as they had already cross matched his blood type.

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The surgeon showed us the images of the scans and it is amazing the amount of his brain which has been damaged. My poor baby has just suffered so much. He said that the tumour had grown about 20% more in the last 9 days….it was growing at some speed and the surgeon is sure that it is cancer.

Leo was intubated for a short while and when they removed the tubes he was breathing fine and brought up to the normal room. I was amazed by how good he looked, he opened his eyes wide and was trying to talk! He said ´vamos´ lets go in Spanish and some other words!!  He was already trying to grab the tubes from his veins out of his arm and to remove the bandage on his head within half an hour of being back in the room!!

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He was asking for a drink and drank loads of juice without a problem. He was trying to smile but I think his face is a bit swollen so it was hard for him. As Jorge said it is like he just went in to have a tooth removed, not major brain surgery!! Incredible! I cannot thank the nurses here and the surgeons here enough! That is another huge obstacle that has been overcome.

Now we need to wait for the lumbar puncture results and the biopsy results to see what type of tumour or cancer this is and if it has spread to any other parts of the body. They will do another scan on Leo on Friday to confirm it is still clear.

Now he just needs to get rid of those cancerous cells in his brain then he is free from this monster! Easier said than done…but Leo still has his strength and is still putting up a bloody big fight to whoever is giving him these challenges in his life.

This evening there was a smell of burning and the fire alarms went off! I was panicking a bit thinking how the hell would we move Leo from the top floor of this building with all this equipment outside! But thank god it was a false alarm, maybe there was a problem with the air conditioning or heating system who knows.

Going to be a long night tonight as Leo´s obs are being monitored every hour! So no sleep for me. I don´t care my baby boy is still alive and still fighting!

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Don´t forget about the girls skydive this Saturday! and the fun day for Leo in the Isle of Man. Then on Sunday a fun afternoon at The Bistro, Pueblo Laguna!

https://crowdfunding.justgiving.com/esme-wood

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Tuesday 3rd November 2015- The light at the end seems to be getting dimmer and dimmer..

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So today another crazy day and exhausting mentally and physically for us all… Leo woke up at about 5am this morning…I think he is still in Spanish time.

We took him for a nice walk and we had to make a few more calls about sorting out medical paperwork but everything looks good on that side of things. The top dogs in the spanish hospital are doing everything to help us now out here to get Leo back.

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Leo loving his yoghurt!

So today I went to primark as I did not bring many clothes for Leo as I thought he would be wearing hospital attire all the time but they don’t have hospital pj´s so I had to grab some stuff from good old primark for him.

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The plan was that the neurosurgeon team at Alder Hey were going to have a meeting today about Leos case and give us a call to probably go in tomorrow and have the operation on Thursday. We received a call and they had finalized the paperwork and had a theatre slot for tomorrow…so we had to come to the hospital asap…Thank god for my little brother who was able to bring us here from Manchester immediately.

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We got the paperwork sorted and got Leos room…..this hospital is so amazing! Leo has his own room and the décor is really nice.

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So the head neurosurgeon came in to speak to us again now and to complete the consent form. He told us straight about his thoughts. His educated opinion is that Leos tumour is not a teratoma tumour as was orginally concluded in Spain. He said that due to its location and the agressiveness of its rapid growth the indications are there that it could be something a lot worse such as a teratoid or rhabdoid tumour which do not have good survival rates at all. He is very confident that the operation will be no problem tomorrow and Leo will be fine….the problem is what is the tumour? They will also do a lumbar puncture test tomorrow to see if there are any microscopic cells of the tumour or cancer being in other places of leos body, if this is the case it will be time to wave the white flag.

I am praying that the biopsy in Spain could not have been so wrong, there are new cases or new diseases and tumours everyday and this could also be Leos case. Spain are going to send a sample of the tumour tissue also to England asap for analysis over here.

Leo has fought so hard…but with the information we got today it almost feels like he could never win this battle no matter how hard he fights….if this is the case of the wrong tumour then he was doomed from the beginning  and nothing anyone could have done could have changed things. The surgeon said that depending on the results we may have to make a decision about if the survival rate is low whether to put Leo through so much pain and suffering if he would not really have a life at the end…..I cannot think about that now, need to do one step at a time or I think I really have a nervous breakdown.

On a happier note…..we received this beautiful Leo the lion blanket today…Thank you so much! It is so beautiful and gave me a lump in my throat seeing it. Leo is using it at the hospital now and he loves it.

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Leo is fast asleep right now, he has had a few tests done, eaten his weetabix for strength for tomorrow and got his new frozen pjs on…. So time to relax a bit and unwind also.

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The next week of results and tests will basically determine Leos whole future..

Everyone please say a  prayer for Leo tomorrow….the operation will probably be about 10.30am UK time.

Monday 2nd November 2015- Good news and bad news today…

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Leo enjoyed spending time with his cousins this morning and playing with them in the house. It is nice that he has got to know them a bit more now.

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Leo went for a brisk walk in the morning in the pram to drop his cousins off at nursery and got to go in the class for a little bit to see some kids which he enjoyed.

So this morning we got Leo registered with a GP which was no problem.

This afternoon we drove to Alder Hey, Hospital in Liverpool.  The hospital looks amazing and is so modern, the new building has only been open for about a month…it looked more like a hotel than a hospital. It is so sad that its just a hospital for sick kids, there are so many of them.

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We had a meeting with the finance people and there are a couple of things we need to sort out then we met the famous neurosurgeon Mr Mallucci.

Mr Mallucci was very very pleasant and he had a look at Leo´s scans and had a quick look at Leo. We explained everything briefly again to him about everything that had happened to Leo in the last 8 weeks. He seemed very optimistic, he said that he thinks the tumour could be cancerous as it has grown so quickly and he thinks possibly it could be a different type of tumour based on its location. Obviously nothing at all is confirmed yet as there will need to be another biopsy on it.

Mr Connors plan would be to remove the tumour as soon as possible and then Leo would need either chemotherapy or radiotherapy. Tomorrow there is a meeting so they will discuss the best action for Leos case. In theory he wants to have Leo at the hospital on Wednesday for tests and then the operation on Thursday.

Even though it is bad news that the tumour could be cancerous I didn´t feel as upset as a few days ago as he seems so optimistic about the operation. He did not really say anything negative about it, obviously as with every major brain operation there are always risks. He also said he would only cut a small incision in Leos head to do the surgery.

Hopefully tomorrow we will have something more concrete and we can start planning more.

Totally mentally drained again today….as you can probably tell by the tonation of the blog tonight. Feels like I have not slept properly in about 2 months!!

Leo had a nice skype chat with his big sister anyway.

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Night night everyone.

Sunday 1st November 2015- I suddenly feel like a foreigner in the UK now…but we made it safe and sound

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A quick update today after another long ass day….

An early start this morning…..saying goodbye to my baby girl was one of the hardest things ever…and watching her say goodbye to her little brother was heartbreaking.

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I am very hay to say we all made it safe and sound to Manchester. Although Easy Jet did assign us all seats apart from each other and I had to tell them that my son could not sit on his own as he had just had brain surgery, they had to get some people to move seats and we finally we all got to sit together thank god.

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Leo was really good on the flight and slept for about an hour and then he was happy just playing with some toys and looking out of the window. I was so scared on the flight incase anything happened to him but thank god he was good as gold..

That is the first hurdle that Leo has overcome…..tomorrow for the next one.

We got picked up from Liverpool by my brother and made it to Manchester. Leo was just gazing out of the windows…I think he was just amazed by the amount of cars on the road compared to the Vera traffic! lol….

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We went for a wander around this evening, Leo passed out with all of the excitement from today and we had a drink a wetherspoons for a bit of dutch courage for whatever tomorrow brings!!

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Night night everyone…..We will see what news tomorrow brings!

Friday 30th and Saturday 31st October 2015- Starting to wonder if this nightmare will or when it will ever end…..

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Sorry I did not complete the blog yesterday…. I felt like I was just in an emotional tornado and could not escape. I just couldn´t get my head together at all to realize what was actually happening.

Two months ago I would have bet my life on it that this was impossible to happen….

Questions just keep going round and round in my head again, why the hell has it happened twice to Leo? and the septicemia! He has done nothing wrong, he just wants to be a normal child….I am so scared that everyday the tumour is getting bigger and bigger and just eating away at his brain….yet he still all smiles through all of it.

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Well yesterday was a birthday that I really do not want to repeat, next year I want to be celebrating my birthday with both of my beautiful babies by my side, that is all I want.

Our plans changed and we are now going to Alder Hey Hospital in England. A neurosurgeon has been highly recommended who is world renowned from Alder Hey Hospital has said he is more than happy to take on Leos case. Also a few nurses from the hospital have been in touch with me and have been very very helpful and welcoming to us.

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Yesterday morning we went to the hospital to tell the hospital that we had decided to go to England for treatment for Leo. The nurses and doctors were very supportive of our decision and were more than helpful with all of our needs. There were a lot of tears from some of the staff at the hospital as they have been with Leo since the beginning and they have seen the whole evolution of his case.

We picked up all of Leos medical history and copies of all of his scans, and the doctors said that we always have a home there at the hospital. They said when Leo returns he is more than welcome to have treatment or rehab there which was really nice of them to say. It was really sad it was like saying goodbye to that chapter of our lives where we have gone through so many emotional rollercoasters in that hospital.

Leo was his normal happy self there and chilled for a bit on his old bed while we were waiting for all of the papers.  The doctors did a basic check up on Leo to confirm he was in good health to fly and everything was fine.

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After saying our goodbyes we had to go and buy a few winter clothes so we do not freeze our butts of in the UK.

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As soon as we returned back home we booked our flights to Liverpool for Sunday. That was it no going back now our decision was made….we began trying to organize things but late in the day I found out that Leo needed to be registered with a GP in order to receive free medical care or we could be risk being left with a very very large bill to pay. The stress levels were for sure at their maximum last night!  I did start to feel like I was just fighting a losing battle, a small part of me said ´hold up the white flag now, this is too hard and I am not strong enough for any of this again´ but when I saw the smile on Leos face that small doubt disappeared…and I really would do anything for him. Even if I ended up paying for the treatment for the rest of my life it is worth it to have my little baby alive!

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If not then looks like the S & P Team will be doing the ´Prowlers for Leo´ Event every weekend to pay for Leos treatment! lol..

Last night was very very stressful as we were trying to make contact between Leos consultant and the consultant at the UK hospital but to no avail. Today Jorge went back to the hospital in Almeria and picked up another CD with Leos scanned and got a signed and stamped letter from one of Leos consultants to say that he is happy for Leo to fly to UK and receive the relevant treatment there. Hopefully everything should be ok now.

Unfortunately now as Leo has to be registered with a doctor in the UK, we will need to do that in Manchester,so tomorrow after arriving in Liverpool we have to travel to Manchester to stay the night, then Monday morning register Leo at the GP and by Monday afternoon hopefully he will be at Alder Hey Hospital. My brother lives in Manchester and we have many friends there so it should not be a problem.

We have been reassured that if Leo deteriorates that we just go to the emergencies and he will be seen to immediately without cost. This does make me feel a little bit more relaxed about the situation. When Leo is finally at Alder Hey in a bed I think my blood pressure might actually decrease a little bit.

Yesterday also I took Leo to the school to say goodbye ´see you soon´ to all of his school mates, and then we went to his old nursery to say goodbye to everyone there. Needless to say there were a hell of a lot of tears.

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Sofia was very very emotional today and saying that all she wanted to do was to play with Leo like before. She told me she had written her list for santa and all it said on it was ´ I just want Leo to be better for Christmas´. That really would make a perfect Christmas for all us and it is what all of us are praying for.  It is like someone messaged me…..A miracle happened once, why not twice……

Today we had fun with the kids and I wanted to make some more memories, I took prints of the kids hands and feet. It got very messy in the end and Sofia also decided to paint Leos lips red! lol…..

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Sofia is with us tonight and early tomorrow I will drop her at my parents house, it is going to be one of the most difficult things ever watching her say goodbye to Leo not knowing when she will next see him again.  The bond between Leo and Sofia is indescribable, you only have to say Sofias name and Leos face lights up so much….they really are like best friends.

Sofia had Leo sat in his pram today and she was pretending she was the teacher and he was the student…she was teaching him the numbers and he was really learning from her! It was adorable! Another moment to treasure and appreciate more than I ever did before.

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Leo not looking too impressed to being photographed with grandad.

We had loads of visitors today which was lovely again to see the support, but also so sad at the same time for the reason of the journey we are about to take in our lives now… later on we did have some scary visitors also! lol

Now time for bed and bring on tomorrow! Leo is ready to win this next fight!

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Leo looking very very scared…..

Thursday 29th October 2015 – A decision has finally been made….

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We have finally made a decision….after a lot of debates some of them a bit heated due to the stressfulness of the situation. It is like deciding Leo´s life for him…

I think I can safely say that it is the hardest decision we have ever had to make in our whole lives and probably ever will.

We have decided to go to Royal Manchester Childrens Hospital as soon as possible. I have spoken with someone there in depth about Leos case and they will be waiting for him. I was also speaking to someone at Alder Hey hospital and it was a very difficult decision between the two. The two liase with each other anyway and in Manchester we have family and more friends which we really will really need as support during this difficult time.

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Thank you so much to friends, nurses from hospitals, doctors and strangers that have messaged me today. It is so overwelming again that people are taking their time to give their advice. I am sorry I cannot reply to them all. My phone battery died in like an hour today as it was non stop ringing and receiving messages. I feel like my head is going to explode, I have not even had time to eat today!

Jorge went to the hospital today to collect a CD with all of Leos scans and all of his reports. They told him they had made a decision to give Leo chemotherapy and if it works and reduces size of tumour, then to proceed with it and eventually radiotherapy. If chemo does not work then he would have the operation.  To be honest I think I would feel more comfortable communicating in my own language and for Leo to be at a place that is a childrens hospital that do have a speciality in dealing with brain tumours.  The hospital we have choosen does also have the latest hi tech equipment. There is no right decision….if only we had a crystal ball.

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We do not know what is the right or wrong decision at the moment, only time will tell. Jorge spoke with a top person at the hospital here also and he said that everyone knows Leos case, he was sending Leos papers to hospitals in Malaga and Barcelona and if needs be then Leo would be taken their immediately.

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We will ask the doctors tomorrow if Leo is safe to fly, if so then we will fly on Sunday to Manchester. If not we have no option but to drive…but time is not on Leos side at the moment. It really is like a race against time. We are also going to ask the doctors to give Leo a regular medical check up to confirm he is in good health. Sofia will fly out in a week or so with my mum when we know more. At the moment Leo needs both of our undivided attention.  We have no idea how long it will be (how long is a piece of string) and we know there is no going back on our decision……it is something we will have to live with. At the end of the day whatever happens we will know that we did everything in our power to save our little boys life.  What will be will be.

Sofia is very confused she does not know what is going on, I told her that we are going and she will come with nana….but it so sad. I will miss my baby girl so bloody much but I cant bring her over yet.

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This is when I have to say another huge thank you for all the donations, this is when it really counts. We would not have even been able to think about going to England if it wasn´t from the help of everyone that has donated.

Leos story is so well known now, the BBC northwest might do a news story on Leo also which would be great for awareness to be raised!!

We need everyone to change their profile pictures to the Lion to bring good luck his way!

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Leo has been a happy chappy today although we are not sure if he is getting sharp pains in his head and sometimes he screams all of a sudden or it could just be frustration. He had an ice cream today, a nice walk which I am sure we will not be doing in freezing England!! We do not even own any winter clothes. lol

It really does look like Leo has won all of the battles he just has to win this final war! When he does and will the funds left we have from donations I woul like to use them to help other families with similar problems as Leos. Even if I could stop one parent going through what we have it is worth more than anything in the world. I do not know the odds of this happening like in Leos case and another tumour growing again so quick but I am sure the odds are unbelievable!  It is not fair, he has fought so so hard with every obstacle put infront of him and overcome every hurdle……why do it to him again! He is such a happy loving little boy…it is just not right at all. Two days ago we were all sooooo happy with all of his progress and being back at home and now our lives just got another bomb dropped on them.

The person that told me that everything happens for a reason I am finding it very very hard to understand why on earth this would happen to him again…..maybe in time the answers will come…but for now all I can say is that Leo has really been dealt a shitty set of cards.

Dont forget the donating websites

https://crowdfunding.justgiving.com/esme-wood

Night night everyone.

Wednesday 28th October 2015- Giving up hope now….Life really is not fair.

I am sorry I cannot write a lot today it was the worst day for a few weeks. No happy photos today.

I went to the hospital expecting to get all clear results and discharge papers. It did not happen.

Four doctors took us into a private room with serious faces. They told us that the tumour cells had reproduced and Leo now had a 4cm tumour in his head. The doctors do not know what is best. Leo might not survive another operation, 2 major brain operations in 2 months is too much. The tumour is too big for radiotherapy or chemotherapy. They have send Leos reports to specialists all over Europe to decide what is best for him. They are speaking with the top people in these type of tumours. They told us it does not look good. They will fight for him but they may eventually have to say there are no more options left. They told me to enjoy the weekend with Leo at home and make the most of it and by the end of the week they would have a decision. They told me in the next 3/4 days nothing will happen to him but if he does vommit or have convulsions we have to go straight to the hospital.

I told the doctors Leo is a fighter, you thought he was blind and he is not, you thought he would die in hours and he didn´t so anything is possible. They did not sound hopeful at all as its a whole new ball game. I had to walk out of the room to break down as I couldn´t take it anymore.

I have been in tears all day. I really do not know what to do. Leo is smiling and happy, he is sitting up on his own now and he has no idea of the deadly tumour in his head. I told Sofia today that Leo had something bad again in his head and he had to go back to hospital, she is so smart. I had to tell her the truth, I told her that he might die but the doctors would do everything they could for him so he is not in pain. She has been very quiet but I will speak with her again tomorrow.

I do not know if me or Leo have the strength anymore to go through all of this again…..  once was enough….