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.
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.
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.
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.