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…..

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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….

Tuesday 27th October 2015- Leo finally got to see his school mates.

A nice relaxing morning for Leo with beautiful weather today! Looks like the rain has disappeared.

I did Leos exercises with him this morning and he seems to be getting more into a routine now with the physio which is good. He is just full of smiles all day it is really amazing and breaks my heart when I have a flashback of the pain that he has suffered and he can still be so happy. He has no idea now at all, it was all just a big nightmare to him. Children are such an inspiration, I think more adults need to take a leaf out of the book of children.

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My good friend popped round for a coffee to see us both, Leo was very happy. We even took him on the trampoline. He seemed to like it as he was stimulated by the balls on it and was trying hard to reach and grab them. We also held him on the slide, I think it is important that he still does things that he used to do obviously in moderation and adjusted to his capabilities but that way he still feels like he is involved and he is not a disabled kid.

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As the weather was nice I took Leo to the school today, it was sad it see all of his school mates walking out together and Leo should be there, he should be part of that group. I was holding Leo and he recognized his friends and was trying to kiss them, most of the kids were quite reserved with him and a bit shy. I guess they remember the typical boisterous Leo running around, causing havoc everywhere, laughing etc….it must be difficult for them to understand why Leo is different to before. I really hope that when Leo is ready to go back to school that he will be able to blend back into the crowd although nothing has happened to him and be one of the normal little boys again one day. At the school it was although Leo was like a celebrity, everyone knew who he was and about his story…Leo was loving all the attention so that part of him certainly has not changed.

I was at the supermarket today and a person behind me asked if I was Leo´s mother, again it shows how many people Leo´s story has really touched.

I took Leo to a cafe today, and he saw the ice creams and he asked for one! So he has officially had his first ice cream and he loved it! ( He did really love it, it was just a bad photo…lol)

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It is a little bit difficult at home as Leo is demanding a lot of attention. At the hospital he could have 24 hours of attention and now he is still craving that. Sometimes I do have to identify his attention seeking cry and leave him for a little bit otherwise he will not learn, sometimes I have to attend to him in a second as I feel so bad after what he has been through.

So many people have been asking how I am feeling now. The truth is I feel like I really have gone totally numb, I almost feel so emotionless now….When Leo was at his worst I was an emotional wreck and I did need stuff to make me relax but now I feel calm and just so happy Leo is home. I know its not finished yet and there is a long way to go…but even if Leo did not improve anymore than he has already the fact is that he is alive and smiling, and that is worth more than anything. We could have lost him.

While I was making the video last night of Leos Journey and looking at the worst photos when Leo was the sickest, I feel like it did not really happen. I cannot remember much now from that time. I guess I have just put a giant block in my head from it.

Tonight this physiotherapist came and she said she has noticed in 3 days that Leo has more strength in his right foot and also he is saying more words than the other day. That is incredible after just 3 short days!

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An early night tonight as tomorrow is an early start to go back to the hospital for the results….feeling a bit nervous but I hope this will be the last drive to the hospital for a while…. Tomorrow hopefully I will get the official discharge papers for Leo and all of his medical reports!

If all goes to plan I think a glass of wine is in order tomorrow night!

Don´t forget about the skydive guys!

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

Tuesday 26th October 2015 – And I thought it would be a quick visit to the hospital…

So today was an early start for us all, trying to get Sofia ready for school and also to get Leo ready to go back to the hospital 1 hour away…rush,rush, rush

We left the house at about 7.15am as we were told to be at the hospital at 8.30am. We finally arrived at the hospital and Leo could not eat or drink anything because of the MRI. He got into the typical hospital attire and was so happy to see all of the nurses again, he greeted them all with a big smile.

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We were waiting and waiting and then the nurses said they had to put the saline solution into Leo´s veins. I was under the impression that we would come here for like an x-ray and the leave within 2 hours…..boy I could not have been more wrong.

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They took Leo to the nurses room where he got prodded again…they put a needle in his veins and the saline solution was set up to go in. I felt so sorry for Leo he has just been poked and prodded so many times its not fair on him at all.

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We chilled in the room and as normal Leo was trying to grab the tubes from his hand, we had to cover it with a sheet to stop him! He played with some toys and had lots of visitors from different nurses and doctors. He was very content and relaxed.

I kept asking the doctor when the MRI would be and they said 30 minutes….of course that was a Spanish 30 minutes.lol….About 1.5 hours later a starving Leo got taken to the MRI scan. They were going to scan his head and all of his spine to check for damage, they said it would take 1 hour.

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I left the hospital to do something, and returned after 1 hour and Leo was still not out, 1.5 hours later I was beginning to panic if something had gone wrong or they had suddenly seen something bad on the MRI.  But eventually the nurse came to get me and I had to follow her to another ward.

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I was a bit confused as to where I was going, I had to wear a material hat, shoes, and gown! I entered a room totally full of people who were just recovering from an anaesestic also. It was not a nice sight! I got directed to Leo and he had an oxygen mask on, he looked ill again. I felt sick in the stomach. Hearing all the beeping noises again from all of the monitors and machines brought back bad bad memories.

As soon as I sat down Leo opened his eyes and smiled at me! The nurse said he must have been waiting for me to wake up! It was incredible, I did not even speak or touch him. He must have sensed that I was there.

There was a nurse who asked me, was this the kid that was in the intensive care about 3 weeks ago and I said yes. She was lost for words that it was the same kid.

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Leo was not drowsy at all, he was smiling and trying to punch me in the face! Everyone else in the room was a bit blurry after waking up after the anaesestic, but of course Leo had to be different and he was shouting at me ´vamos´´ (lets go) lol. He was trying to yank the tubes out of his arm and pushed the oxygen mask out of the way, he kept pulling the heart beat thing off his finger! He is such a little rebel! lol.

We finally made it back to the room, I think it was about 3pm. Leo finally could have a drink and eat. Then I was asking the nurse to remove his drip then we could go. We waited about another hour for that and eventually left at about 6.30pm.

I was not prepared for such a long day at all!!  Leo was a little star and then slept all the way home.

Now the waiting game again….back to the hospital again on Wednesday for the results and the official papers for Leo to be discharged from the hospital.

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Love this photo of little brother, protecting his big sister!

Saturday 25th and Sunday 26th October 2015- The First Weekend Back Home!

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A weekend that I never thought would happen or I would not have in a long long time with our 2 babies at home together.

Yesterday morning was so nice waking up in our own beds with Leo, I didn´t sleep as well as I should have as I was worried about the first night at home without nurses around. Every movement he made I jumped! But he was fine, he had a good nights sleep after all the excitement from the welcome home party. He woke me up by punching me in the face! Typical Leo!

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Saturday morning a private physiotherapist came round, she assessed Leo and we explained everything that had happened to him, so he will begin with 3 sessions a week, then 2 days a week I might take him swimming. It was impossible for her to say if he will ever walk again, she will need to see the progress over the next couple of months. So next week he will have his first 3 private sessions.

He ate his breakfast well, baby food, banana and yoghurt for lunch. And then I tried to break little pieces of pasta for him and he managed to chew them without a problem. As I was sitting there next to Leo with the plate full of pasta, Sofia started talking to me. In that 2 seconds Leo grabbed a handful of pasta with his left hand and shoved it all in his mouth. I had to force his jaw open to get it all out….he was soooo fast!! Needless to say there were a hell of a lot of tears after that.

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In the evening my friend came round and we gave Leo a bath. I really cannot believe his weight, when we lifted him out it took two of us to carry him!! I can´t even bath him on my own now! I guess it is as his head is still very heavy and the right side of the body its like dead weight. I did buy a bath seat for him but I got as far as putting his feet in it and then thought he would get stuck so I didn´t go any further…..I didn´t want to be going back to the urgencies saying Leo had a bath seat stuck on him! lol

Leo has been so happy spending time at home with us all, he has been laughing so much with his big sister, playing with toys, lego and he still loves playing hide and seek. Sofia has taught him a few new words now and the change in her is incredible and the love between the two of them.

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I had a couple of good friends who came round to move Leos bed out of the living room back into his bedroom. I had orginally put his bed in the living room as I thought he would be bed ridden and not moving, and it would be easier for me to cook and for him to still be involved in things but that is certainly not the case…It seems everyday I am moving furniture to try and find the perfect balance for him!

I was in the kitchen in the morning and I put Leo on the floor, Sofia was outside getting toys for him and he rolled over, then pushed with one leg to the other side of the carpet. I looked was like WTF how did he get from there to there……incredible!! So I cannot really leave him on his own on a bed…might have to think about getting a cot for him.

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Leo is still a little joker!

We are trying to stimulate his right hand but he is very protective of it and grabs it and covers it with his left hand…it will come in time.

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We had such a lovely weekend relaxing and it is so nice not worrying about work at the moment, I feel like I have more energy for both of the kids.

Today Leo actually ate spaghetti Bol, I mashed it up but it seems he is getting more and more confident at swallowing which is fabulous!

I read on the internet that sometimes when someone has brain surgery that when the tissue is regrowing that they can get pains in their head and it helps when a hand is rubbing the face. Leo does want us to stroke his face a lot and he relaxes more when we do it. Tomorrow I will ask the doctors if Leo is feeling any pain or headaches…as also sometimes he just breaks out crying for no reason.

So tomorrow another big day the MRI test, we need to leave our house at 7am! They will also do a spinal column test to see if any damage was made to his spine from the pressure of the tumour, this will also tell us if he will be able to walk again. I think it will probably take 2 days for the results from these tests. I am feeling a bit nervous about them but at the end of the day whatever the MRI shows or the spinal test shows, we cannot change the results. We can only work on making Leo stronger and stronger with whatever obstacles lie ahead of him in his life. If the results are all ok we will finally get the official papers to leave the hospital with all of the reports and then find out the next step.

Today I managed to take a couple of photos of Leos scar on his head…it really is incredible the amount of skull the cut to remove the tumour. One day Leo will ask me about what happened to him when he was young but I will need to make sure he is at an age where he can really understand everything we all went through and how serious it was. He also has a few bald patches where it looks like the hair is not growing back, I will ask the doctors about this also tomorrow.

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We want to say a BIG Thank You to the Villaricos Gold Society for their beautiful letter and their more than generous donation for Leo. Thank you so much.

People keep asking if I will continue the blog now, I think I will continue for this week everyday as we have the tests and then if all is ok I will update every week.

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Don´t forget about the naked skydive guys! Here is the link

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