Tuesday, 12 April 2011
COAST.... photos below
GOING COASTAL... – 4:50am the alarm tune starts playing away, my eyes creep open to see the darkness still blacking out the curtains and window frames, turning on the bed side light my eyes scrunch up as though someone is trying to gouge them with their fingers and I need to protect them. It’s time to get up, check the boys are awake, quick shower and then hit the road. I open the bedroom door to walk to the bathroom, via the spare room, knocking gently asking out loud ‘are you awake?’. I open the door to see the light is already on and two smartly dressed boys sitting on their made beds, suitcases nearby ready to leave. A little surprised I congratulate them on their readiness and still eye scrunching I head for a shower to wake me up. James who is helping me on this expedition woke at 4:30am and decided to get the other boys ready. Charles the gardener is busy in the kitchen making hot chai for the boys. I throw on my clothes, gather my bags and head for the kitchen and car to start packing. Outside is an eerie silence not normally associated with the Nairobi city life, it is still early enough that most are in bed, except for the few cars wishing to avoid rush hour traffic and heading to work early. Everyone climbs in, the car is packed, the boys are excited, after a quick prayer for a safe journey we exit the gate, waving goodbye to the house staff and start meandering through the empty city streets. It is not long before we are out on the Mombasa highway and heading south. We are on the Athi Plains just as the sun starts to rise, this is record timing, the journey has now fully begun... 600kms to Watamu on the coast of Kenya. THE REASON WHY? – So what was this trip all about? Well Peter who is now 13 years old has been battling with cancer for almost 18 months now. He has a neuroblastoma on his forehead. Chemo was attempted for 12 months at one of Kenya’s top hospitals, but as the course came to an end, the aggressive tumour came straight back. This left us with the agonising decision of what to do next. In the end, following doctors advice and looking at predicted outcomes it was decided Peter had had enough treatment and discomfort of chemo. It was now time to leave him in God’s hands, barring a miracle Peter will not make it, probably before the end of the year, but timing no one really knows. It was now time to move from investing in Peter’s treatment to investing in Peter’s life and the time he has left. After a quick rallying cry to many supporters money was raised to take Peter on a trip of a lifetime, a week on the Kenyan coast, something that most Kenyans never get to experience in their lifetimes, but what would be considered a middle class holiday for the average westerner. So the road trip party was going to include: Peter, one of his best friends Erico and James who has finished high school and awaiting university who cares for Peter and looks after him, plus myself obviously, the chauffeur, holiday planner, first aider and parental figure. This trip was all about spoiling Peter. WATAM’’S – The resort which gave us a special discount for our trip and were so amazing helping us in making this trip possible was Turtle Bay Beach Club, which is in Watamu, soon to be nicknamed ‘Watam’s’ by the boys. Watam’s is nearly 2 hours drive north of Mombasa on the coastal road. With numerous beach resorts along the coast line Watamu is one of the slightly quieter ones but one of the most glorious beaches. Turtle Bay Beach Club although providing your standard resort type stuff with all inclusiveness somehow manages to retain a family run feel. This place was chosen because it is great for families and being all inclusive meant it would be easy for the boys. So for 6 days the boys where on the coast and it was an interesting time... EYES WIDE OPEN – Walking down the steps towards the lobby, luggage in tow were 3 boys with eyes wide open, gasps of breath, followed by little giggles. The lobby was huge, cold towels brought out to freshen the faces and along with cold juice, it was time to feel like Kings. After dumping the bags in the rooms, with the now constant giggling and shocks of awe we headed down to the vast pool and there at the edge was the white sands of Turtle Bay and the big blue wide expanse of the ocean. Shock and awe was finally defined by the 3 boys. I headed with Peter down to the sea, the other 2 standing slightly back, afraid of the vastness and size of the ocean, seeing waves crashing into the sands for the first time and being intimidated by its power. Peter though, unafraid and craving adventure walked with me down to the edge, barefooted and ready to plant his feet in the ocean for the first time. Although Peter grew up next to lake Victoria, a rather sizable lake connecting the countries of Eastern Africa, the ocean was a whole new ball game, this was big, I mean really big. He slowly placed his feet in the zone where the waves would gently lap up onto the white sands, the luke warm feeling of water rushing in between his toes and over his small feet, this was the Indian ocean, Peter’s first ever ocean. James and Erico stood back and watched in amazement. For firsts, they don’t come much better than this. All I could think of, after all the rubbish that I’ve faced in recent months, was ‘how amazing is this’, it felt like a huge honour and privilege to be there, to witness such joy and wide eyeness. How many oceans have I seen, how many seas have I swam in, from a young age, to me this is just another ocean full of fun and excitement, to the 3 boys this was the edge of the earth, the furthest perhaps to travel in 1 lifetime, miles and miles away from the Nairobi frenzy. It was just time to stand in awe and wonder, who could make something so magical, so powerful and so utterly beautiful as the ocean. BEACH LIFE – There were only a few beach beds by the pool but many on the beach itself right at the hotel, next to thatched rooves and shades. The first morning we selected our patch (which would end up being ours for the week), my plan to be in sight of the pool and the ocean to keep close eye on the boys, with a metal table allowing me to padlock my bag to it and keep the valuables safe. Some beach life educating needed to be undertaken, but was soon abandoned. The boys could not understand... why would you sit all day on a beach bed sleeping when there was a giant pool with crystal clear water and a scary ocean just begging to be explored. So we hit the pool, knowing that I had about 2 and half swimmers in tow. James took to the pool water with ease, Peter strode in with confidence and demonstrated his swimming abilities, basically front crawl, head in the water, powering as hard as he could until he needed to breath again which would required stopping, standing up, wiping his eyes and taking in huge gulps of oxygen, this obviously limited the distance he could swim at any one time. Erico, pretending to be able to swim seemed to wade through the water never really daring to lift his feet off the floor. The swimming pool was huge which about two thirds set a low depth and then a slightly separate deeper end. It soon registered that swimming lessons for Erico would be required. Having been 15 years since getting into the baby pool at Rydings School in Zimbabwe and teaching Gabriel to swim for the house competition I was a little concerned I had forgotten how to teach swimming (although even 15 years ago it had all been made up at the time as well, although Gabriel did eventually swim an entire length of the senior pool with a paddle board, what I genuinely feel as one of my greatest achievements and proudest moments). After about 20 minutes of lessons Erico was free to do his thing and well for the next 5 days he practically lived in the pool, when he was not in the pool he was at a table for lunch, or in the bathroom, or heading down to the ocean and canoeing, or cycling, but at all other times he was in the pool, the least of us at swimming but with the biggest heart for dwelling in the water all day, he was quickly named ‘Erico the fish’. By the end of the trip Erico could swim breast stroke, swim under water and had all the confidence of a child having enjoyed a lifetimes worth of summer holidays. DRESS CODE – So the restaurant was next to the pool and reasonably informal. One thing that concerned me before travelling was the extent to which Peter’s tumour was growing, and his desire to constantly cover it with a hat. We discussed as we headed to the pool that he could keep his hat on if he wanted, but the temptation of splashing around without the care of looking after a hat meant in the pool he was happy without it, there were too many other distractions to bother thinking of what other might see, or think. Outside of the pool though is a different story, with adults starring and looking at us like we were some motley crew, 3 kenyan kids an a white guy, I guess we did kind of stand out. For the first dinner we headed to the restaurant. I knew there was a dress code, I knew hats were not allowed, but while trying to identify some sort of manager the boys where already at the buffet getting food. I gave up looking and just decided to get on with it. Some of the chefs at the buffet had questioned him over the hat, and feeling very protective I wanted to bounce over and tell them to back off in the politest way possible. But when eventually the dress code manager person came over to mention he should remove the hat, slightly embarrassed I stood up and took him to one side, in some attempt to be out of earshot of Peter, to explain to the waiter the situation. No problem, no problem, now it has been explained was the message from the waiter. Still for a few meals from the waiters or chefs not aware of the situation they would say things to Peter and I realised he was being rude in response... not surprising really, in the end I told him if anyone has issues just tell them to speak to me, in my best big brother attitude. After a couple of days though, everyone was used to us, the waiters, chefs and manager guy were all really nice and we were fine. Well how could you not be fine with soooooo much food available. The boys feasted. At times perhaps it was a challenge to find the right food for them at the buffet, particularly as it was tailored mainly to western tastes, but the boys soon found their groove. The most interesting choice they made was breakfast which generally consisted of an omelette with bacon or sausages on bread... bread covered in strawberry jam... each morning it left me delivering a giggle of my own, although that was lost on the boys. ALL BOYS NEED ADVENTURE – bicycles were free to take out, and this was Peter’s biggest wish, to get on a bicycle and go somewhere. We went to try them out, finding bikes the perfect size for the boys... and for me... well it felt like I was on some bmx for an 8 year old. I decided I would manage, having ridden bikes for years in Edinburgh. Helmets were adorned onto the boys heads, somehow managing to get over Peter’s tumour. Obviously being the experienced cyclist and bad rolemodel that believes in ‘do as i say and not as I do’ I decided to fashion a nice baseball cap instead of a helmet, so that I could keep the sun off my forehead and hoping that the protective layer of thin cotten fabric would protect me from any unfortunate tarmac to forehead greetings. Off we went, heading to the centre of Watam’s along a very straight and slightly potholed road. Pain, then some more pain, shortness of breath, sweat pouring down my back, my neck, my forehead, pain, more pain, knees starting to snap under the pressure, yes this bike was indeed far too small for me. Worried I was going too slow I managed to keep in front and lead the way. Watam’s consisted of a bank, a salon, a petrol station, a few little shops and about 3 roads, oh and an Ice Cream parlour. After the first leg of our Tour de Watam’s there was a significant requirement to eat ice cream, so sat around the plastic patio furniture we ate our Italian Ice Creams, satisfied that they were truely earnt, even though we had just gorged on a huge lunch just an hour earlier. 3 very happy cyclists and 1 older guy with a knee broken, head spinning who was pretending to be able to ride a bicycle with some kind of skill. We headed back to the hotel, with Peter who had a HUGE big grin on his face, this had made his day. That was it, I realised we just needed one big thing each day, one thing that he would love and enjoy, beyond the already awesomness of being in the swimming and by the sea, something big that a story could be told from. Canoeing was the order of the day next. As the ocean would leave the Turtle Bay shores to venture on to some foreign beach perhaps in India or somewhere far away, we were left with a big open space to explore fish, crabs and anything we could find. A sand bank would appear in the ocean, and a smooth glass like surface on the water of the lagoon as the waves had moved away to focus their attention on the breaker further out and coral wall with the tide over on that distant shore. Canoes were free for the hotel guests and so we set off paddling. Slightly concerned about the swimming abilities of some of the crew, life jackets were forced upon the 3 boys, again by the overly confident, bad role model adult who clearly didn’t need one. Heading out in 2 canoes we left the shore line for our first adventure into the deep ocean (well slightly deep lagoon, well maybe 5 foot deep lagoon). We reached the sand bank, parked up the canoes safely on the sand, and wondered around the coral to see what we could see. After many small fish, a big green fish, bright red star fish and an octopus we decided to head back. This was to be the first of many adventures in the canoes. PIZZA – If there is one thing that makes a boy smile, its the word ‘Pizza’. Apart from the main restaurant there was also a Pizza restaurant we could go to. Once tasted it was not forgotted, and in some attempt to avoid pizza at every meal I negotiated our way through a week or alternating between the main restaurant and the pizza place. BALANCING ACTS – being a resort type place in the evenings there would be some kind of performance, perhaps a choir, a band, acrobats or a magician. Probably the highlight was the acrobats, about 8 super strong Rasta’s who must spend most of their time in the gym jumping through hoops, climbing massive pools, all balancing on each other and doing flips and flops on some very hard concrete. They had truely remarkable skill. Unfortunately Peter didn’t always make the evening entertainment. It became clear after the first cycle trip and the canoe trip his body couldn’t cope with huge amounts of exercise, he would become very tired, and the headaches had started to really set in more and more. Each day we juggled with doing some fun activities with also time to rest and chill and it wasn’t long before he discovered the purpose of those beach beds. In the evenings I decided it was best he had early nights, to make the most of each day. It was a balancing act between having fun and not pushing him too hard, by the end we had it down to a tee (or is that tea, I’m not sure?). AEROBICS AND OTHER POOL ACTION – The pool was generally a casual area, with kids and adults all messing around. At around 11am each morning the music would come on, blasting through some huge speakers and for a brief moment you questioned yourself and where you actually where. Was this a beach resort in Kenya a or cheesy nightclub in the UK pumping out Rihanna with possibly the worst DJ in the world who only liked listening to songs for approximately 30 seconds at a time before moving on to the next. James and Erico decided to join in on the first day, yes it was time for water aerobics. 2 young Kenyan boys amongst a whole bunch of white Kenyans, Europeans and Americans. It was hilarious as in the water dancing began. Photos would never do justice but a good time was truely had by all. Later in the afternoon was water polo. On day 1 I ended up taking the position of goalie, which wasn’t so much fun, particularly as the slightly aggressive British guys decided to take it a little too seriously and felt being a big guy it was fair to stand 1 metre in front of my face and throw the ball as hard as possible into my face. My purpose for being there was to try and include as many of the kids playing as possible and also to keep an eye on Peter and the boys, making sure these over eager adults were careful with the boy, who by visibility alone was clearly in need of being taken on gently by any would be attacker. My days at water polo were limited, in fact 1 match was enough, but for the other days the boys continued to play and for Peter scoring goals was a particular treat he managed to enjoy quite a few times. Towards the end of the trip, about 3 evenings in a row, as the sun began to lower in the sky, the shade moving across the pool, the hotel guests slowly starting to depart from their day at the beach and heading to rooms to freshen up for dinner, I was in the pool with Erico and a British boy, a similar age to Erico. We hardly spoke the 3 of us, but for probably over half an hour each evening we threw the polo ball to each other, sometimes deliberately splashing each other, sometimes just trying to do spectacular catches and sometimes just enjoying the simple pleasure of throwing and catching a ball. We did occasionally say some things and talk and I discovered this young lad was here with his family, but was the youngest, didn’t really have anyone to play with and was from Wales. I loved it, here was this young lad from the UK, on his annual family holiday, with Erico a young orphan from the slums of Kenya both in the pool throwing a ball to each other, simply as equals, simply as two young lads just having fun. For me it was just another pleasure to be part of. DHOW (NOT REFERENCING HOMER SIMPSON)– On the last day at the resort I booked a special treat for the boys, a trip on a Dhow (a traditional sail boat used to transport goods up and down the coast). It was a sundowner trip, down the local creek, with cocktails and bitings. Normally the boat could take up to 35 people, but on that day only 8 of us had booked, so we had the boat to ourselves. We cruised down the creek, drinking yummy cocktails (non-alcoholic for us) and ate plenty. Probably the best part was the plate of breaded king sized prawns which was left for myself and a British guy to finish off as no one else seemed to like prawns. YUMMY! THE HOLIDAY THINGS – So when you’re on holiday you write postcards, you use your pocket money to buy souvenirs and both of these were enacted by the boys. Through the generosity of so many people I was able to give the boys pocket money to spend in the hotel shop. In the cool air conditioned atmosphere of the hotel shop the boys perused the shelves and items until decisions were finally made and hats and t shirts were purchased, soon to be worn by the newly graduated tourists. Post cards were written to the doctors and people at the Nairobi Hospice who have been helping take care of Peter and also to Cheryls, to bring sunny coastal greetings to all the staff and kids. LEAVING – The day finally came where it was time to hit the road again, it was greeted with much sadness and an almost unbelievable notion that such a holiday could end. But the treats were not over and a brief stop at Mombasa city brought in a tour of the famous Fort Jesus, something studied at school along with a passing by of the massive (fake) elephant tusks that cover the road in the middle of the city and represent the iconic image of Mombasa, something often seen on TV but again for non-coastal Kenyans, hardly ever seen. Heading back up the highway an overnight stop was held at Maneaters Camp, as one of the few guests we pretty much had the place to ourselves. The swimming pool was tiny in comparison to Watam’s but presented an excellent size for playing tig in the water. The camp is situated at the famous area where Colonel Patterson killed man eating lions who terrorised the workers building the rail road through Africa, watch ‘The Ghost and the Darkness’ film for the gory details! The following day it was time for the long tarmac road back to the big smoke of Nairobi, putting the sunny coastal region further and further behind us and arriving back in the cooler climate of Nairobi. The adventure was over, but would be played over and over again in the minds of the 3 young Kenyan boys. A trip to be truly remembered until the day you die, whether that be this year or in 60 years, it was a really blessing, something to be treasured and never forgotten something that helped to put life into a young boys days, whose days may be numbered.
Friday, 18 February 2011
CANCER
Right now it seems that the horrible disease of cancer is dominating everything. The start of 2011 has been a nightmare and there are worrying signs for us ahead. As you will know we have 2 children with cancer and also Samuel is battling with a tumour as well.
After my trip back to the UK I came back to Kenya to find Peter, the 13 year old boy who has been battling with a tumour on his head, having arrived back at the same situation he was in 13 months previous. We were had reached the stage of Peter receiving his final chemo session at the start of January, but just as that was due, a smal bump came up in the same spot as before on his forehead. It was very hard to take and when I did return from my grans funeral the lump had really grown, chemo was halted and tests were done. It was now time to face the docs and get an update. So in the midddle of January we had a meeting and were told the surgeons said they could operate and try to remove the tumour, but there was no guarantee they could get it all. Peter woudl then need to go on chemo for another year or so with possible radiotherapy too. The complication with chemo though is that as he has had so much already the cancer will have started to evolve and build up some immunity so it woudl be tricky in choosing which chemo drugs to use. The prognosis wasn't good and the docs left it to us to decide whether we go ahead with surgery and treatment or call it a day on trying to cure Peter. We walked away from the meeting devastated, how on earth could we make such a decision on someones life?? either give him a chance or call it a day and bring a death sentance on him.
We met the next day to discuss but none of us could come to a conclusion. I was getting ready for the Mount Kenya trip and I knew I needed more time to think. Also I was hoping to talk about the caase with 2 people on our mount kenya trip who were senior and experienced hospice doctors. So for the next 2 weeks I was away on the expedition, thinking, questioning, and in all honesty was probably more worried about how I could live with myself if I decided not support more treatment, its something I am ashamed to say that in a way that worried me more than the choice for Peter, how could I play God???
So a few weeks went by and I got some good advice from the hospice guys, they said ask what his chances are of surviving beyond 5 years. I got back to Nairobi after the mount kenya trip and emailed the doc asking that very question. He came back to me saying that 'IF' surgery worked and he received more chemo etc, his chances of lasting more than 2 years was 2 in 10. As soon as I received this email it was now clear in my mind. We could not put Peter through such painful surgery, loads more chemo and pretty much end up in the same place. It was clear we had come to the end of treatment for cure but now focusing on making the best of the days he has left. Thankfully his legal guardian and extended relatives all came to the same conclusion and there was a great deal of reassurance in that we had reached the decision together and shared responsibility in it.
Peter still doesn;t know what is going on, but I have now registered him at Nairobi Hospice, a place I once went to as a school boy on my first trip to kenya, to help out for a week. How could I ever believe that 15 years later I would be back there with a boy I am caring for. Next week on thursday we will go to day care and with the help of the nurse, counsellor and doctor there we will break the news to Peter. I am dreading that day and just cannot imagine how Peter will take the news, a boy aged 13 knowing that his life is going to end soon. We don't have a time scale and no-one can predict, but with the location of the tumour and the rate it is growing it is not looking great.
In the coming months we are going to face some very diffficult times and some seriously heart breaking ones. It seems so unfair that after all this work, after taking him through so much we are now in this situation. But I am glad of the support of the hospice and I know we will be really relying on them for help. Their vision is "Putting life into their days" so not worrying about extending life, but making the most of the life we have. This has made me think about Peter and the time he has left. I want to do something special for him, while we still can. I remember in the UK that there are charities that organise special things for kids who have terminal illnesses, such as disney world trips etc. If I could I would take Peter to Old Trafford to see Man utd, the team he absolutely adores, or I would take him to disney land Paris. But I know this is not possible, too many complications, getting passports, money, and risks of taking someone in his state overseas. But what I can do is organise a trip to Mombasa, its not Old Trafford, or disnety worl, but ist the closest thing to ana amazing holiday for a kid from Cheryls. I have spoken to a resort called Turtle Bay, an all inclusive place in Watamu. Its not my ccup of tea, but they seem to do things for kids, its a safe place and they have a great swiming pool etc. They have agreed to help us out and are giving me resident rates, with a 20% discount on top, plus the childrens rates are really cheap. My plan is that 4 of us would go down. Myself and Peter, plus a best friend of Peter (someone he can choose) plus James, who helps me out with lookking after Peter, James is one of our older boys who has finished school and spent many a night in the hospital looking after Peter.
The cost of the trip for 5 days which includes petrol etc is roughly £1,000 for the 4 of us. Its not often I would use this blog to directly try and raise money, but in this case I must, because I don't have this kind of cash available. I would be hoping to do the trip at the start of April, I can't wait too long in case his health detriorates and we couldn't travel, but I also need time to get organised and raise some money. The hotel have also agreed I don't have to pay the 50% deposit until a week before so they have given me more time than usual. we cannot put this money through the CWK charity as it would not necessarily fit their Trust Deed, so in raising these funds I would just need to receive them in my UK bank account and then I can pay the hotel here in a bank in Nairobi.
As I say i don't often use this to appeal for money directly but in this case the blog seems the best tool. We will still be spending money on Peter's medical care and we do have some funds in the bank to keep going with this, hopefully we will have enough in the long term, but for now we are ok. So I need to raise £1,000 for this special trip for Peter, a final gift, pretty much the last thing I can do for him other than organise his care. If anyone can help please email me and let me know, small or large, anything would be really appreciated, I want this to happen for him, I want him to enjoy the time he has, I want him to get the chance to play in the ocean, mess around in a swimming pool, have some laughs with some friends on the beach, eat some yummy food and for a week just pretend like everything is ok and forget about all this cancer stuff, I want to put life into his days. my email address: kjbkenya@hotmail.co.uk
Finally I must say thank you for all the support so many have given towards Peter over the last 18 months. Your prayers, your financial support have been overwhelming. I am gutted the outcome is not different, but if it wasn't for so many people getting involved perhaps he wouldn't have made it this far. Please keep praying, there is always room left for a miracle.
After my trip back to the UK I came back to Kenya to find Peter, the 13 year old boy who has been battling with a tumour on his head, having arrived back at the same situation he was in 13 months previous. We were had reached the stage of Peter receiving his final chemo session at the start of January, but just as that was due, a smal bump came up in the same spot as before on his forehead. It was very hard to take and when I did return from my grans funeral the lump had really grown, chemo was halted and tests were done. It was now time to face the docs and get an update. So in the midddle of January we had a meeting and were told the surgeons said they could operate and try to remove the tumour, but there was no guarantee they could get it all. Peter woudl then need to go on chemo for another year or so with possible radiotherapy too. The complication with chemo though is that as he has had so much already the cancer will have started to evolve and build up some immunity so it woudl be tricky in choosing which chemo drugs to use. The prognosis wasn't good and the docs left it to us to decide whether we go ahead with surgery and treatment or call it a day on trying to cure Peter. We walked away from the meeting devastated, how on earth could we make such a decision on someones life?? either give him a chance or call it a day and bring a death sentance on him.
We met the next day to discuss but none of us could come to a conclusion. I was getting ready for the Mount Kenya trip and I knew I needed more time to think. Also I was hoping to talk about the caase with 2 people on our mount kenya trip who were senior and experienced hospice doctors. So for the next 2 weeks I was away on the expedition, thinking, questioning, and in all honesty was probably more worried about how I could live with myself if I decided not support more treatment, its something I am ashamed to say that in a way that worried me more than the choice for Peter, how could I play God???
So a few weeks went by and I got some good advice from the hospice guys, they said ask what his chances are of surviving beyond 5 years. I got back to Nairobi after the mount kenya trip and emailed the doc asking that very question. He came back to me saying that 'IF' surgery worked and he received more chemo etc, his chances of lasting more than 2 years was 2 in 10. As soon as I received this email it was now clear in my mind. We could not put Peter through such painful surgery, loads more chemo and pretty much end up in the same place. It was clear we had come to the end of treatment for cure but now focusing on making the best of the days he has left. Thankfully his legal guardian and extended relatives all came to the same conclusion and there was a great deal of reassurance in that we had reached the decision together and shared responsibility in it.
Peter still doesn;t know what is going on, but I have now registered him at Nairobi Hospice, a place I once went to as a school boy on my first trip to kenya, to help out for a week. How could I ever believe that 15 years later I would be back there with a boy I am caring for. Next week on thursday we will go to day care and with the help of the nurse, counsellor and doctor there we will break the news to Peter. I am dreading that day and just cannot imagine how Peter will take the news, a boy aged 13 knowing that his life is going to end soon. We don't have a time scale and no-one can predict, but with the location of the tumour and the rate it is growing it is not looking great.
In the coming months we are going to face some very diffficult times and some seriously heart breaking ones. It seems so unfair that after all this work, after taking him through so much we are now in this situation. But I am glad of the support of the hospice and I know we will be really relying on them for help. Their vision is "Putting life into their days" so not worrying about extending life, but making the most of the life we have. This has made me think about Peter and the time he has left. I want to do something special for him, while we still can. I remember in the UK that there are charities that organise special things for kids who have terminal illnesses, such as disney world trips etc. If I could I would take Peter to Old Trafford to see Man utd, the team he absolutely adores, or I would take him to disney land Paris. But I know this is not possible, too many complications, getting passports, money, and risks of taking someone in his state overseas. But what I can do is organise a trip to Mombasa, its not Old Trafford, or disnety worl, but ist the closest thing to ana amazing holiday for a kid from Cheryls. I have spoken to a resort called Turtle Bay, an all inclusive place in Watamu. Its not my ccup of tea, but they seem to do things for kids, its a safe place and they have a great swiming pool etc. They have agreed to help us out and are giving me resident rates, with a 20% discount on top, plus the childrens rates are really cheap. My plan is that 4 of us would go down. Myself and Peter, plus a best friend of Peter (someone he can choose) plus James, who helps me out with lookking after Peter, James is one of our older boys who has finished school and spent many a night in the hospital looking after Peter.
The cost of the trip for 5 days which includes petrol etc is roughly £1,000 for the 4 of us. Its not often I would use this blog to directly try and raise money, but in this case I must, because I don't have this kind of cash available. I would be hoping to do the trip at the start of April, I can't wait too long in case his health detriorates and we couldn't travel, but I also need time to get organised and raise some money. The hotel have also agreed I don't have to pay the 50% deposit until a week before so they have given me more time than usual. we cannot put this money through the CWK charity as it would not necessarily fit their Trust Deed, so in raising these funds I would just need to receive them in my UK bank account and then I can pay the hotel here in a bank in Nairobi.
As I say i don't often use this to appeal for money directly but in this case the blog seems the best tool. We will still be spending money on Peter's medical care and we do have some funds in the bank to keep going with this, hopefully we will have enough in the long term, but for now we are ok. So I need to raise £1,000 for this special trip for Peter, a final gift, pretty much the last thing I can do for him other than organise his care. If anyone can help please email me and let me know, small or large, anything would be really appreciated, I want this to happen for him, I want him to enjoy the time he has, I want him to get the chance to play in the ocean, mess around in a swimming pool, have some laughs with some friends on the beach, eat some yummy food and for a week just pretend like everything is ok and forget about all this cancer stuff, I want to put life into his days. my email address: kjbkenya@hotmail.co.uk
Finally I must say thank you for all the support so many have given towards Peter over the last 18 months. Your prayers, your financial support have been overwhelming. I am gutted the outcome is not different, but if it wasn't for so many people getting involved perhaps he wouldn't have made it this far. Please keep praying, there is always room left for a miracle.
Thursday, 10 February 2011
MOUNT KENYA - PHOTOS ALSO BELOW POST
ON TOP OF THE WORLD – After years of talking about it, it being a distance dream.. (of mine I’m not sure, but of somone’s, yes), the time finally arrived for our expedition up Mount Kenya, Africa’s second highest peak after Kilimanjaro, only 900metres higher. Our expedition was to take 5 nights traversing and ascending into Mount Kenya’s peaks and valleys before climbing the to the summit (or Point Lenana, which is as high as you can walk). We set off, gear in hand to Old Moses camp. The pace is always slow at the start because the biggest fear is getting altitude sickness which at the least means you have to get off the mount, and at the worst means death. The slower you walk the better because it means you acclimatise quicker. Slow walking??? Thats my kind of mountain trip! First camp we were in tents, a little too short for me and David, windy and cold at night and arriving in the dark and trying to find all your stuff was no fun. Our porters carry our stuff, plus some plastic table and chairs for us to dine with, total extravagance. That night at Old Moses there was a hut so we ate sat in side, a delicious meal and then headed to bed. David and I both struggled to sleep and by 2 am, without any sleep we decided to pack up our stuff and head into the hut to sleep in one of the small dorm rooms, so for about 4 hours we slept. Next day we continued to climb, the vegetation changing around us, no more trees, mainly bush, heather and some very unusual looking plant life. We headed up to this beautiful valley which would be only ours for the night. IN the bottom we could see a tiny hut which would be the kitchen and bedroom for the porters, for us it was tents again. The valley was stunning and amazing it was only us there. Through the whole journey we could see some of the peaks of the mount, mainly covered in some snow and it was always drawing us and pulling us closer and closer.
That afternoon as we rested and recovered at camp we start to see what initially looked like cloud moving into the valley. After more inspection we realised it wasn’t cloud but smoke from a fire. Above a whirring noise kept coming and we watched as a helicopter kept going back and forth above us. We discovered through phone calls to basecamp that a fire had been started by Poachers on the Chegoria side of the mountain (supposedly a stunning landscape which we had been saving for our descent). People were being rescued from the fire and it soon became clear we would not be descending the mountain that way. This did bring some initial disappointment from the group but then relief we hadn’t come up that way and got caught in the fire.
The next day we packed up and I was ready early. Because of my bad asthma our expedition organiser had given us extra guides, so Paul one of the guides encouraged me to set off early ahead of the others so we could tackle the first initial climb which would be tough. It was much easier for me to walk at my own pace and control my breathing, my strategy was keep going slow and steady with stopping as little as possible. It was all about rhythm, breathing and walking in rhythm, that’s how I would control my breathing so everytime i stopped it was hard to get back into the rhythm, so me and Paul set off, at my pace, and before I knew it we were at the top of the first hard bit of the morning. I was so pleased and realised if I was going to get to the top the next day I would have to do it this way, on my own with Paul as my guide. The others caught up and we descended into another valley and slowly headed to Shiptons, our final Hut before the summit. The landscape continued to change and became more and more weird with what looked like alien plant life. The closest thing I could compare it to would be a Star Trek ‘set’ from the early episodes in the 60s or 70s, it was crazy.
Reaching Shiptons we felt the cold and could see the mighty task before us to reach point Lenana. It was standing there above us, proud and majestic, partly snow covered with an almighty steep scree just before it. All of us felt anxious, how was this going to be possible???? Even knowing that thousands had gone before us in time, it still seemed crazy and impossible. There was an air of anticipation in the camp that night, as we ate, read our books, talked with some crazy Israelis who were also climbing the next day. We kept going outside the hut to see the mountain, I guess hoping in some way it had changed shape and wasn’t quite as bad as the last time we looked, or perhaps maybe just we had missed looking for an easy route. It never changed, and remained the same shape all night funnily enough.
I woke at 1am, knowing that in an hour we were to get up, so I put my ipod on and watched the minutes tick by. At 2am we rose, started packing our things in the dark, (having all pretty much slept in the clothes we were to climb in that day). Tea and biscuits for breakfast and then back packs on and for the first time, really warm clothes, rain coats, gaiters, waterproof trousers, basically the works. My day pack was filled with snacks and energy stuff to keep me going. As usual I was ready before everyone else so Paul grabbed me and said lets go. We set off, the first to ascend the final stage. I had my head torch on, walking poles at the ready and set off in the pitch black. My plan was clear, using my head start, stay as long as you can infront of the others, so then when they catch up and go past hopefully there would not be as far to go so I could reach them and join them at the top so they wouldn’t have to be hanging around for me. So head down, breathing kept in control and realise its just going to be uphill for the next 3 – 4 hours in the dark. As we set off my head was down with the torch just lighting the way in front of me, the ground sparkled like it was covered in thousands of diamonds, the gravel, the grass, the plants, the rocks, the sand, everything sparkled, it was magical. But soon this began to end and we got to the scree, climbing each step but occasionally the feet slipping back. I tried to just look forward and not think of the others behind me, but after not long I could see the torches below getting closer and closer and then I heard talking. As we stopped to breathe I looked behind and realised it was the Israelis, who had set off the same time as the rest of my crew behind me, but seemed to be powering on hard. We let them pass, and began to walk again, my crew still a fair way behind, mayb 15 minutes gap. We carried on at the pace of my choosing, slow and steady, one foot at a time in front of the other, breathing in breathing out hard, breathing in, breathing out hard, we just kept walking and to my shock somehow we seemed to have caught up with the Israelis, they had slowed right down and were struggling. We passed them but they kept up and then they passed me, it was like playing tag for about 20 minutes, until I was ahead and had created a gap between me and them. I wasn’t trying to race them, I was trying to concentrate on my own pace, but secretly inside I was pleased to be back in the lead again. My own group seemed far away but I knew the higher we got the slower I would become and I was sure they would catch me anyways. We stopped to rest by a Tarn, still in the dark, we sat myself and paul, rested and he told me the next step is the last stage, 1 hours climb. I looked down and couldn;t see any lights, we sat for 10 minutes eating and resting. My eyes were adjusting to the light and I could see the peak looming ominously above me, a large black rock shape that was obviously bigger than a single rock, but there it was. I began to see how steep it was around us and that the scree just ran straight down, if you got dizzy and fell it would be a long way rolling down the mountain at this stage. One Israeli met us and sat down, but we had rested enough and set off again. At this stage it began to dawn on me that perhaps if I could keep going maybe I could get to the top first... me the asthma boy, overweight and unfit might just make it there for the sunrise and the honour of being first (although I did have a head start so it wouldn’t be that amazing).
We set off and boy did it get hard, then harder and even harder still. Soon we were scrambling over rocks and the steps up and over rocks grew bigger and harder, harder to control breathing, legs aching, oxygen getting lower and weather getting colder. The closer we got to the top the more I could see and the more it felt it was getting further and further away. I began to stop more and more to breathe, the torches below getting closer and closer, I knew the Israelis were picking up the pace and I had resolved to myself I had got this far being in the lead I must get to the top first, I was not going to let the Israelis snatch victory in the final stages. We kept pushing, higher and higher, the top getting closer but the climb getting harder. I could see the last stretch, I dug in deep pushed hard, threw caution to the wind and worked my way up to the final moment, a large rock to climb up, Paul gave me his hand but I was determined to do it myself, I pulled my way up and there we were, on top of the world... well the small bit of world around me. I could see the flag on the final few rocks, Paul waited and let me rush to it, I hugged it and leaned on it, breathing and seeing the sun just start to peak above the horizon. I had made it, I made it first, I was at the top, in time for sunrise.... I could not believe it. For a few minutes I had the place to myself, it was mine, my flag, my summit, my view, I had done the impossible. What relief and what joy. The Israelis soon joined me and I shook their hands (with a little smugness inside, but really just happy, and pleased for them too). About 10 minutes later the rest of the gang joined. I think we timed it perfectly, I had left maybe 15 mins before them and so it was perfect we were all at the top at the same time.
We spent 20 – 30 mins at the top, watching the sunrise, taking photos and trying to take it all in. BUT it was freezing... I was struggling to control my breathing and soon it was time to go down. This was the hardest bit, we had to cross a very steep rocky and snowy and icy section which at times meant being on all fours holding on to the mountain. One bad slip and you would be sliding down to major injury if not death! This threw me, it wasn’t the height or danger but in concentrating so much on climbing down I forgot to control the breathing and I lost it, and for an asthmatic thats a big deal. We got to the point of being able to walk a bit easy down but my breathing had gone, my body was devoid of energy and I trudged down, the back of our group, defeated by my inability to breathe. There is a small hut on the other side which we were not using and I just got there, lay on the gravel slope on my side curled up, I was done, I was spent, I didn’t want to go any further. I was sad at that point, I thought of my grandmother who had just passed and sat their slowly attempting to eat a pop tart but each chew required too much strength, tears rolling down my cheeks through my glasses. It was my lowest moment. I gone from total joy and jubilation from being at the top to being lost, sad, grieving and drained of energy. Everyone was ready to press on down. I picked myself up, wiped my cheeks, Paul who had come to know me very well came over as I set off down he just took my day bag off me, he knew I was spent and had little energy and was struggling to breathe. He took my back pack and we headed down, past the glacier down another scree, past the most beautiful pool at the bottom of the glacier and by 11:30am we reached the next hut. I was done, I was wrecked, we had breakfast and I went to lay down. I was worried my breathing was still not right.
An hour later they called us for lunch I began to eat a sandwhich when suddenly I realised the sandwich had peanut butter in it, i couldn’t believe it, it was the last thing I needed. My lips swelled a little, there was an itch in my throat and a pain in my chest and started to feel sick. I tried to blank it out but I couldn’t. I went to lay down, I slept, relaxed and in time it faded away. By evening I had regained some strength, the breathing was better. Next day we continued down Naramora side, at pace, the plan to reach the hut and then next day walk to the gate. Word came though that there was a problem at our last hut etc and so perhaps we would be picked up there and go stay at someones house. In a way I was sad we wouldn’t walk to the gate but as time pressed on and the first rain set in I decided, we had done it, we had done the mountain and it was time to go. The final 9 kms on the last day would have been on a dirt road, we would not have seen much so I was happy we were leaving, I was stinking, I was ready for warm weather and a shower.
So we had done it... in fact the hardest bit of the whole trip was sleeping at night, it was horrible, but the climbing, when I was able to do my own thing was fine and despite a rubbish descent I had made it and done it well. We were slow, but that was to our advantage as none of us had issues with altitude sickness and hadn’t taken any tablets to prevent this. I loved the top and I am so glad I did it. I joked with my friends and people who had organised the trip beforehand, trying to show I was forced into the trip and didn’t really want to go and well if you asked me a week before I really wasn’t interested in the trip, i had so much going on at work and in my life I was struggling to face the thought of doing the mountain. But having done it, it was fantastic, hard, fun, tiring but great. Don’t think I would be going to the top again, but maybe the next challenge is Killimanjaro... we will see.
That afternoon as we rested and recovered at camp we start to see what initially looked like cloud moving into the valley. After more inspection we realised it wasn’t cloud but smoke from a fire. Above a whirring noise kept coming and we watched as a helicopter kept going back and forth above us. We discovered through phone calls to basecamp that a fire had been started by Poachers on the Chegoria side of the mountain (supposedly a stunning landscape which we had been saving for our descent). People were being rescued from the fire and it soon became clear we would not be descending the mountain that way. This did bring some initial disappointment from the group but then relief we hadn’t come up that way and got caught in the fire.
The next day we packed up and I was ready early. Because of my bad asthma our expedition organiser had given us extra guides, so Paul one of the guides encouraged me to set off early ahead of the others so we could tackle the first initial climb which would be tough. It was much easier for me to walk at my own pace and control my breathing, my strategy was keep going slow and steady with stopping as little as possible. It was all about rhythm, breathing and walking in rhythm, that’s how I would control my breathing so everytime i stopped it was hard to get back into the rhythm, so me and Paul set off, at my pace, and before I knew it we were at the top of the first hard bit of the morning. I was so pleased and realised if I was going to get to the top the next day I would have to do it this way, on my own with Paul as my guide. The others caught up and we descended into another valley and slowly headed to Shiptons, our final Hut before the summit. The landscape continued to change and became more and more weird with what looked like alien plant life. The closest thing I could compare it to would be a Star Trek ‘set’ from the early episodes in the 60s or 70s, it was crazy.
Reaching Shiptons we felt the cold and could see the mighty task before us to reach point Lenana. It was standing there above us, proud and majestic, partly snow covered with an almighty steep scree just before it. All of us felt anxious, how was this going to be possible???? Even knowing that thousands had gone before us in time, it still seemed crazy and impossible. There was an air of anticipation in the camp that night, as we ate, read our books, talked with some crazy Israelis who were also climbing the next day. We kept going outside the hut to see the mountain, I guess hoping in some way it had changed shape and wasn’t quite as bad as the last time we looked, or perhaps maybe just we had missed looking for an easy route. It never changed, and remained the same shape all night funnily enough.
I woke at 1am, knowing that in an hour we were to get up, so I put my ipod on and watched the minutes tick by. At 2am we rose, started packing our things in the dark, (having all pretty much slept in the clothes we were to climb in that day). Tea and biscuits for breakfast and then back packs on and for the first time, really warm clothes, rain coats, gaiters, waterproof trousers, basically the works. My day pack was filled with snacks and energy stuff to keep me going. As usual I was ready before everyone else so Paul grabbed me and said lets go. We set off, the first to ascend the final stage. I had my head torch on, walking poles at the ready and set off in the pitch black. My plan was clear, using my head start, stay as long as you can infront of the others, so then when they catch up and go past hopefully there would not be as far to go so I could reach them and join them at the top so they wouldn’t have to be hanging around for me. So head down, breathing kept in control and realise its just going to be uphill for the next 3 – 4 hours in the dark. As we set off my head was down with the torch just lighting the way in front of me, the ground sparkled like it was covered in thousands of diamonds, the gravel, the grass, the plants, the rocks, the sand, everything sparkled, it was magical. But soon this began to end and we got to the scree, climbing each step but occasionally the feet slipping back. I tried to just look forward and not think of the others behind me, but after not long I could see the torches below getting closer and closer and then I heard talking. As we stopped to breathe I looked behind and realised it was the Israelis, who had set off the same time as the rest of my crew behind me, but seemed to be powering on hard. We let them pass, and began to walk again, my crew still a fair way behind, mayb 15 minutes gap. We carried on at the pace of my choosing, slow and steady, one foot at a time in front of the other, breathing in breathing out hard, breathing in, breathing out hard, we just kept walking and to my shock somehow we seemed to have caught up with the Israelis, they had slowed right down and were struggling. We passed them but they kept up and then they passed me, it was like playing tag for about 20 minutes, until I was ahead and had created a gap between me and them. I wasn’t trying to race them, I was trying to concentrate on my own pace, but secretly inside I was pleased to be back in the lead again. My own group seemed far away but I knew the higher we got the slower I would become and I was sure they would catch me anyways. We stopped to rest by a Tarn, still in the dark, we sat myself and paul, rested and he told me the next step is the last stage, 1 hours climb. I looked down and couldn;t see any lights, we sat for 10 minutes eating and resting. My eyes were adjusting to the light and I could see the peak looming ominously above me, a large black rock shape that was obviously bigger than a single rock, but there it was. I began to see how steep it was around us and that the scree just ran straight down, if you got dizzy and fell it would be a long way rolling down the mountain at this stage. One Israeli met us and sat down, but we had rested enough and set off again. At this stage it began to dawn on me that perhaps if I could keep going maybe I could get to the top first... me the asthma boy, overweight and unfit might just make it there for the sunrise and the honour of being first (although I did have a head start so it wouldn’t be that amazing).
We set off and boy did it get hard, then harder and even harder still. Soon we were scrambling over rocks and the steps up and over rocks grew bigger and harder, harder to control breathing, legs aching, oxygen getting lower and weather getting colder. The closer we got to the top the more I could see and the more it felt it was getting further and further away. I began to stop more and more to breathe, the torches below getting closer and closer, I knew the Israelis were picking up the pace and I had resolved to myself I had got this far being in the lead I must get to the top first, I was not going to let the Israelis snatch victory in the final stages. We kept pushing, higher and higher, the top getting closer but the climb getting harder. I could see the last stretch, I dug in deep pushed hard, threw caution to the wind and worked my way up to the final moment, a large rock to climb up, Paul gave me his hand but I was determined to do it myself, I pulled my way up and there we were, on top of the world... well the small bit of world around me. I could see the flag on the final few rocks, Paul waited and let me rush to it, I hugged it and leaned on it, breathing and seeing the sun just start to peak above the horizon. I had made it, I made it first, I was at the top, in time for sunrise.... I could not believe it. For a few minutes I had the place to myself, it was mine, my flag, my summit, my view, I had done the impossible. What relief and what joy. The Israelis soon joined me and I shook their hands (with a little smugness inside, but really just happy, and pleased for them too). About 10 minutes later the rest of the gang joined. I think we timed it perfectly, I had left maybe 15 mins before them and so it was perfect we were all at the top at the same time.
We spent 20 – 30 mins at the top, watching the sunrise, taking photos and trying to take it all in. BUT it was freezing... I was struggling to control my breathing and soon it was time to go down. This was the hardest bit, we had to cross a very steep rocky and snowy and icy section which at times meant being on all fours holding on to the mountain. One bad slip and you would be sliding down to major injury if not death! This threw me, it wasn’t the height or danger but in concentrating so much on climbing down I forgot to control the breathing and I lost it, and for an asthmatic thats a big deal. We got to the point of being able to walk a bit easy down but my breathing had gone, my body was devoid of energy and I trudged down, the back of our group, defeated by my inability to breathe. There is a small hut on the other side which we were not using and I just got there, lay on the gravel slope on my side curled up, I was done, I was spent, I didn’t want to go any further. I was sad at that point, I thought of my grandmother who had just passed and sat their slowly attempting to eat a pop tart but each chew required too much strength, tears rolling down my cheeks through my glasses. It was my lowest moment. I gone from total joy and jubilation from being at the top to being lost, sad, grieving and drained of energy. Everyone was ready to press on down. I picked myself up, wiped my cheeks, Paul who had come to know me very well came over as I set off down he just took my day bag off me, he knew I was spent and had little energy and was struggling to breathe. He took my back pack and we headed down, past the glacier down another scree, past the most beautiful pool at the bottom of the glacier and by 11:30am we reached the next hut. I was done, I was wrecked, we had breakfast and I went to lay down. I was worried my breathing was still not right.
An hour later they called us for lunch I began to eat a sandwhich when suddenly I realised the sandwich had peanut butter in it, i couldn’t believe it, it was the last thing I needed. My lips swelled a little, there was an itch in my throat and a pain in my chest and started to feel sick. I tried to blank it out but I couldn’t. I went to lay down, I slept, relaxed and in time it faded away. By evening I had regained some strength, the breathing was better. Next day we continued down Naramora side, at pace, the plan to reach the hut and then next day walk to the gate. Word came though that there was a problem at our last hut etc and so perhaps we would be picked up there and go stay at someones house. In a way I was sad we wouldn’t walk to the gate but as time pressed on and the first rain set in I decided, we had done it, we had done the mountain and it was time to go. The final 9 kms on the last day would have been on a dirt road, we would not have seen much so I was happy we were leaving, I was stinking, I was ready for warm weather and a shower.
So we had done it... in fact the hardest bit of the whole trip was sleeping at night, it was horrible, but the climbing, when I was able to do my own thing was fine and despite a rubbish descent I had made it and done it well. We were slow, but that was to our advantage as none of us had issues with altitude sickness and hadn’t taken any tablets to prevent this. I loved the top and I am so glad I did it. I joked with my friends and people who had organised the trip beforehand, trying to show I was forced into the trip and didn’t really want to go and well if you asked me a week before I really wasn’t interested in the trip, i had so much going on at work and in my life I was struggling to face the thought of doing the mountain. But having done it, it was fantastic, hard, fun, tiring but great. Don’t think I would be going to the top again, but maybe the next challenge is Killimanjaro... we will see.
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