SWINGS< ROUNDABOUTS AND MIRACLES

SWINGS, ROUNDABOUTS AND MIRACLES – So thing have changed once again with Peter. For the last week or so he has just been getting on with life in Cheryls, apart from the large tumour on his head you wouldn;t really know anything was happening, he is still his funny and usual self. Peter has a great sense of humour and is always making everyone laugh. I have been buying him plenty of fruit to eat, lots of fluids and a bit extra food. The amazing thing actually though is how is tumour seems to have reduced in the last couple of weeks. It has been remarkable and so before seeing the neurosurgeon I thought we should go back and see the professor. He was astounded and it seems hard to explain! He ahs never seen anything like this before I think, he has seen non-hodgkins lymphomas go down fast but not like this and also tests indicate its not that anyway. So the decision has been made to keep going with the chemo for now and see whats happening, he will perhaps need surgery later but for now if the chemo works as miraculously as it has been then we shall continue. Peter’s case is being presented to the Tumour Board next week and I know the doctors are all very interested in it because its a bit of a mystery! I know lots of people are praying for Peter so perhaps are we seeing a miracle in the making?? I don’t know? But after the sad news of last week, perhaps there is hope!! I’m trying to just take each week as it comes, because the situation is constantly changing and we are swinging from one thing to the other. The hard times are still the hospital, yesterday he had his second run of chemo, and it was a painful day for him, he did struggle and in a way I think it eventually all caught up with him as he sobbed after receiving the 2nd lot of medicine. In a way I was pleased that he could express his emotion, if I was him I would be very unhappy, sad, angry and confused, I am sure he is feeling all these things, this just seems so unfair, but its important he can express that. He is such a good boy, but letting out your emotions is a healthy thing for him. It was an emotionally exhausting day for me and James too looking after him, but we found that a few very competitive games of LUDO cheered us 3 boys all up! Why does Peter seem to win every game??? Especially draughts, he pretty much beats everyone, even the adults!!

BUMPER CARS – ok so yesterday I had my first Nairobi crash, ok well crash sounds a little dramatic, I bumped a bus. Unfortunately the buss was in pretty good condition and had a good paint job. I was trying to pull out of the Cheryls junction, but the traffic was crazy on the way I was going, I decided the only way to get going was to move out and try and get in the queue (pretty much what you always have to do here, no-one really lets you out unless you push your way in). The bus should have let me through, but he decided to just go and force me off, I think he pulled slightly towards me and I let go of my brakes slightly and edged forward (partly because I was so angry he didn;t let me through) and then my bull bar touched the bus, scraping it slightly!! NIGHTMARE! Was sooo worried, it was my fault, but on reflection he was also his to a certain extent. But waiting for police to get involved is a nightmare. We talked, he spoke on his phone to the boss and I paid him some money for the paint job and we both left, annoyed with each other. My heart was racing after, but mainly because I was annoyed at myself. Oh well, could be the first of many, who knows, it seems to happen all the time with everyone! But its not much fun!

HIGH SCHOOL – at the moment many of our high school students are waiting to get back to school. A couple of the schools we were using we have since discovered are really bad schools so we are trying to transfer schools. For girls this is not so bad because in Moi’s time as president he built many schools for girls, but this has left the boys behind. We have 6 boys here waiting to go back to high school, but we are stuggling to find them. Also the cost per child is sooooo huge for us, its about £300 per term all included for the cheaper schools, but even this is high for us, as we have nothing in the bank at the moment for this. We have 6 boys to send to high school, plus lots more form 1’s who are starting high school this year. Its a massive pressure, and I was laying in bed awake at 5am this morning just wondering how we will manage it. I can;t wait for us to build our own high school and a lot of this pressure will be eased, the cost will be much less! As much as we are working hard to buy land to build for our future projects we still need to keep running things as they are, its an almighty task. The amazing thing is how keen they are to go to school and how much they want to work hard. Our children really value education and are disappointed when teachers aren’t performing well and pushing them hard. In a way its sooooo different from home, but here an education can bring you a real future, so its highly valued, but just expensive!!!

POLICE SQUAD – There are many check points at night time on the roads, supposedly looking for stolen goods, drug trafficking etc, but in reality all they do is take money from people and bribes. Well so far I have managed to avoid getting stopped, but the other day I was pulled over. This was at a police check point on the highway, yes the main large 2 lane motorway in the city, they force everyone to slow down and go through this barricade thing, its nuts!! But anyways i was stopped, he checked my insurance and said hello, pointed his torch inside a few times and then thankfully he let us on our way, at that point my heart started beating again! It is a big question for us living here, do you pay a small bribe, just to keep moving and avoid any hassles, but in the process help contribute to an already corrupt society, or do you stand your ground, risk going to court and paying a high fine. Its a big moral dilemma. On the one hand I want to keep my integrity but on the other I don;t want to risk too much and end up paying a huge fine. Its a tricky one, and in reality until I get my residency permit I don;t want to risk too much, but it is a moral dilemma that so far I have not been faced with, but I am sure at some point my luck will run out and I will have to make a choice!

STIMA – I have learnt that the Swahili word for POWER is STIMA. I want to know why does the STIMA always go off when its your day off and you want to relax at home watching some rugby on the TV??? In all seriousness the power going off can get really annoying. We cancelled our movie night at the kids home on Friday because the STIMA was off. Its just one of those things you have to live with here, but its soooooo annoying! If it does it during the 6 nations I think I will cry! (no exaggeration!)

CRIME – So the other day we had a thief in our childrens home. He was in the office going through Mary’s bag. She was down at the school and I hadn;t arrived yet. He was caught red handed. As I turned up there was a small crowd round him at the gate, some of the older boys holding him, Mary holding his arm, everyone shouting loudly in Swahili. I asked what was going on and was told. I thought i would be able to help but after a while realised i did not understand what everyone was saying so just left it as Mary called the police. Stealing is a very serious crime here and I had heard that in crowded areas people can lynch and kill thieves. Well Mary phoned the police, their advice was “just kill him and then we will come and pick up the body”. They couldn;t be bothered with the hassle of arresting him or the paperwork, so easier just to lynch him and deal with the dead body. Now I understood why the guy was so scared and crying, he knew he was potentially facing death! Its strange that even though you hear about stuff, still when you’re faced with it for real its a big shock. Samuel and I sat down and discussed it, we decided we should just make sure he is really scared and warn him off and then just let him go, we don’t want any blood on our hands. So just as we were about to let him go a policeman turned up and took him away. The whole thing was crazy and real eye opener into the culture here. I was pleased that Sam was so relaxed and we had both come to the same conclusion, it wasn;t worth getting upset about and causing problems, such as DEATH! But what it has done is raise concerns about security. We have become aware of people checking out our place and also that our fence is very poor. One of the things we don;t have is a day security guard, which is a problem. Its nice the kids can come in and out of the gate no problem, but we also have so many strangers coming to see us, asking for help and we know some of them will be criminals checking the place out. We have found some resources to put up a better fence and secure the property, but really we need a day guard, where visitors will sign in and out. It will be a shame for the kids as they will be leess free in a sense, but for their safety its what we need to do. But then we have the same problem, money, everything comes down to money, we need to find money to pay a day guards salary, until then we must wait, keep watch.

ARACNAPHOBES – just an update on the spider situation, well they seem to have gone for now. Its the dry season now, very very very hot and while there is no rain, it seems the baboon spiders are vacationing from my house somewhere else! So hope they are topping up their tans and eating plenty, then when the rains come I’ll be ready, watchful, armed with my DOOM spray and a shoe! But for now the spider wars are over!

The link to Peter's medical profile is below on a post, also for the building project as well.

PETER and CHRISTMAS NEWS

So its been a long time since I properly updated the blog, but the way things stand I am still drowning in work and problems. So my solution was to throw up some photos of the christmas period so you can see what has been happening.

For the last month my main focus has been on getting us all through Christmas while Sam was on holidays and then focusing on Peter and his cancer. Added to all this we are sorting high schools for the kids which is a nightmare, expensive and hard work. I was warned January is a busy month but its crazy!!! Finding out that the Burns Night Ball fundraiser in Edinburgh was cancelled was like being hit by a train, the whole day I felt lost, disppair and tired that we seem to be facing more challenges, one after the other, its times like that when you just want to win something, one victory over one problem. But in that case I suddenly felt this huge burden fall back on my shoulders and with a fragile emotional state at the moment it was the worst timing.

But I need to soldier on, there is big work ahead and the next few months are serisouly important. We are close to signing the agreement for purchasing land which is a big step, we need to find the £180,000 and fast, without the ball this is going to be so much harder, but we can do it, its sooo important and definately the right step and the key to our future.

There is updated news about Peter, today is his birthday, but we had some tough news yesterday at the hospital, hard to digest and I don;t think it has really sunk in. I have written it in his medical profile, I have updated the whole thing so please do read it. You can download it here and see what is going on:

http://www.box.net/shared/n5bczce6v4

Its going to be tough and next week will tell us a lot about Peter. Please do pray for us, especially Peter. Thank you for the support and encouragement. I have not been able to keep up with much comunication this last month, just making short replies, but I really appreciate it. PLease keep finding out about Peter that definately helps me!! The thing that has amazed me is how hard it is to support him as a parent in the hospital, each time he has a lumber puncture you wait in the waiting room praying things are ok but knowing he is scared and in pain, then you need to pick up his spirits when the tears well up in his eyes as he gets tired of nurses and doctors constantly prodding and sticking needles in him, then trying to communicate in simple terms whats happening to him. But what has amazed me even more is just how hard true parents woudl have to work with a child with cancer. At the end of the day I go home at night, sleep in my bed, and a volunteer or lillian stays with him, while he is at cheryls and not in the hospital others are making sure he is ok, I am in awe of parents when there is only the 2 of you and you are taking care of a sick child, the emotional energy, the ability to keep going, that is awe inspiring and I realise that even when I struggle there are others working so much harder than me, they are the inspirational ones. The first time Peter went to hospital the girl next door must have been about 3 years old, stick thin, struggling with pneumonia. The mum was working each day, the dad was in the hospital for 2 weeks solid, 24/7, he was a hero, he nursed her, fed her, changed her, i admired his strength and ability to keep going and I am reminded I must trudge on, no matter what challenges we face, because sooner or later we will win one of these things!!

MONDAY and CHEMO

Hey folks

So yesterday was a quiet day, most of the doctors off. We got the test results from KEMRI today after a few harsh words because they were messing us around, my stress getting to me a little. Then came to the hospital.

They have decided to treat it as Non Hodgkins and after much discussion have decided to hold off on the surgery after all and see how he does with Chemohterapy. So we have begun a treatment programme today. I'm currently sat on the bed while the drip delivers the chemo. He had another lumber puncture today and he certainly doesn;t like them, probably like everyone else, but hopefully over time he will get used to it. While he was semi sedated after the Lumber Puncture he had his eyese closed and started humming worship songs, was quite funny.

At the moment I feel a little relief now that we have a treatment programme and know what to expect for the short term future. We have a lot of money to raise so we need to work hard, but at least we know what we are doing. Hopefully he will be home soon for a few days and I can take a break which will be good, and then catch up on all the other work I have missed. At some point I will update the blog with what happened over Christmas, but for now hopefully that updates news on Peter.

If you would like to support Peter financially you can get contact details from the www.cwk.org.uk website and donate through them.

THINGS ARE CHANGING

Hi folks,

its been a strange 24 hours and things have changed a lot at the hospital, I will try to mke sense of it here for you and keep it short.

Yesterday we eventually saw the neurosurgeons, after some more tests they decided not to go ahead with surgery and just go with the chemo. The plan was for us to be discharged Saturday moring and see Professor next week to discuss the long term treatment plan. However we were to keep an eye on Peter to make sure nothing changed.

So last night Lillian stayed with him, Peter changed and suddenly was very sick, vommitting and feeling dizzy. They didn;t sleep much at all. I came in very early and he was not well. This has now changed things again. The surgeons have had another look and are now considering surgery again. Also our main doc who's day off it is today came in and also called the professor (again who is supposed to still be on his holidays). He looked at Peter and the scans etc and he is thinkign that perhaps its not Non Hodgkins Lymphoma after all but another type of Tumour that can look like it but is very different, but that might not be good news. So again everything is still up in the air, the surgeons and paediatric doctors need to discuss and try to get an accurate daignosis. We desperatly need the test results from KEMRI but they still haven't produced anything. The plan now is that Peter stays in the hospital, may have some surgery next week if its deemed necessary, but will start some medication on Tuesday after more tests.

Its been very frustrating and confusing and also worrying. I am so annoyed we still don;t know but I am so glad we are here at Aga Khan because I knw we have the best doctors workin on him, it seems like its really tricky to fully diagnose. So we need to be patient and wait, and unfortately Peter will; be staying in the hospital now until things change again.

I will keep you posted.

k

EMERGENCY POST - UPDATE

If you didn't read yesterdays post, read that one first.

Here is an update though for today. I'm sat in the hospital with Peter, he just had some lunch. Today he is having a few more tests, meeting the neurosurgeon etc. Hopefully the operation will be done tomorrow, so that will be the big day.

Thank you to everyone who has already responded, we really appreciate it and it has encouraged me so much. The great news is that someone has pledged £5,000 to cover the cost of this operation and also the previous tests, assuming everything goes according to plan this should be enough, so thats a great relief. We will still need to raise money for Chemo and any other future operations etc, so I guess we are now officially raising funds for Peter. Please do get in touch if you can help.

The big answer to prayer though is that this initial emergency is covered and for that I am so grateful, but we have long road ahead....

Will keep you posted.

EMERGENCY POST

This is a very difficulty post to write, and I have been wondering for the last 20 hours on what to put. I’m sat in my office today knowing that for the next few days I will be sat in the Paediatric ICU at Aga Khan hospital with our boy Peter Ochieng.

Peter needs a serious operation around his brain and fast. We thought we had more time to prepare for this, but unfortunately nature has not allowed so and we need to move quickly. I have copied a link below which takes you to 2 documents which you can download. One is a short profile about who Peter is and the other is Medical profile which explains how we have got to this point.

I can’t explain how stressful life has been these last few weeks, and particularly dealing with Peter medical issue. I have questioned myself a lot on how we can deal with this situation. Right now we need to raise £180,000 to buy land for our future development for the home, we also need to find sponsorship for 170 children. With all the pressure of that I now need to find funds to provide for Peter’s urgent medical care. I don’t want to take away from fundraising for the land and for child sponsors and I would ask that if you were thinking of helping us with the land or sponsoring a child that you go ahead with that. This is extra, this is not about us as a Childrens Home, this is about a 12 year old boy, from Kenya, an orphan who has cancer and a brain tumour. If you want to find out more and possibly want to help please download these files and read them. Currently I am exhausting all my funds in my bank accounts to pay for his medical expenses, what choice do I have, at the moment if I don’t there is no other money. But my funds are running out fast. We need help, I need help, Peter needs help.

I am sorry for not updating this blog sooner, I’m sorry I have not replied to messages people have sent. I’m just treading water and trying to stay afloat. Please have patience and please forgive. But for now the focus is on Peter, he is actually the boy in the blue Tshirt in the photo on the right (from 2007). Here is the link:

http://www.box.net/shared/hvhkrjx6hc