"Practical" Blogging

I have definitely come to realize the challenges of blogging. As you may have noted I just updated the blog for the first time in 4 months. To be honest... I started THAT entry a month ago and was hoping for the time to find the pictures to add to it. I am learning more and more how blogs can and should work as I watch my co-workers start them up in a matter of minutes and update them with a few thoughts and some great pictures that may end of up as two paragraphs, then it is done. Volia!

I realize that bloggin is about getting information out quickly and simply. If I can learn to look at this blog like that making the time to update it won’t be such an issue. Right?

Well that is the plan anyway. Keeping life simple right now is extremely challenging and most days I try not to think about how we do it. We just do it. One day at a time. 10 minutes at a time.

I was dreaming of “a vacation” the other day, one that I hope some day we may be able to take. A real family vacation without the responsibilities of family or friend obligations. No offense, but we have never had a vacation with just the three of us and thought is pretty darn appealing.

In Patrick’s practical wisdom, he told me that I really should stop dreaming about that for now. It wasn’t going to happen any time soon nor was a simple day off to enjoy the family and our amazing fall weather and Colorado’s the brillant colors. I wasting time and energy on wanting it and “THAT ” really was a waste of time and energy.

His thought process definitely comes from his African roots, boarding school and military background where is it about practical measures, day to day living and survival.
It is hard to accept but I do need every bit of energy I can muster up.

I am now teaching two classes on Mondays my day off from the paper. Working 6 days a week is a serious challenge. I wake up at 4am to leave by 5am to be in Denver by 6:30am to start my class at 7:30am. I have a short hour break at 11:30am if I am lucky and then begin my 2nd class at which goes until 4:30pm. I do love the jobs but it is difficult to find any balance and be very good at either.

My time with Rafiki is so limited and it reflects in our relationship. He wants me by his side the minute I walk through the door and although I want to be with him to need a bit of time for the home admin that grows from hills into mountains daily. I envision getting things done when he goes to sleep but he fights to stay awake to be with me and by the time he does finally go to be I am ready to go to bed to and can’t face the mountains.

4 months really?

Today marks our fourth month back in the States together since our journey began. It is hard to believe it has been that long. For once I don’t think I can say that it feels like time has flown by. It is good to think that we are 8 months into our 3 year treatment.... only 2 and half more years to go.

Rafiki is doing very well. I never thought I would be inspired by a 2 year-old. When Rafiki isn’t feeling the side effects of the chemo he is running around acting like a typical 2 year-old boy. He loves trucks, all emergency vehicles especially fire engines, animals- he does a great horse impression, and golf.

He loves being outside and as soon as he is done eating breakfast usually asking to put his shoes on and go outside. He is great about his hat and remembers to put it on himself. He gets more grumpy when you try to take it off then put it on. He has lost his hair again. After his first intensive round of chemo was finished he started growing back a bit of the fuzz but with our second round he has lost it again.

I started to get use to him with his fuzz and because of his great attitude would often forget about him being sick, it is truly what a few minutes or even seconds of forgetting can do when this situation weights on you constantly. He has a wonderful hat a girlfriend and I picked up at a second hand store with fish on it he gets compliments on it every time he wears it.

You hardly see other kids wearing hats and especially not inside. When we do get a compliment I remember the secret that is lurking below. It is a strange symbol or our situation.

Our last big test for remission that we had done in England was inconclusive about Rafiki’s remission. Which I am trying to remind myself is a neutral statement. That is just means it isn’t clear whether the Leukemia is gone completely or not. It has definitely stopped growing but gone is another story ( well that is my shallow understanding of it). Because of that result both the doctors in the UK and here recommended we do two blocks of Delayed Intensive (DI) chemo.

Basically, what that means is two blocks of 2 months of chemo with a small break in the middle to make sure he is strong enough to move onto the next block. This is where we are now. Rafiki finished his first DI the end of August. He did well and had very few side effects which we are grateful for of course.

The treatment during the DI includes:
• oral meds daily and weekly
• spinal taps-with injection of chemo drugs into the spin- a minor surgery that Rafiki goes under for
• injections into his leg
• infusion- this is where Rafiki is hooked up to a “robot” (as they call them in England) and has a few hours of being connected and chemo drugs pushed into him.
Not to mention constant blood test.

Infusion is usually an old day process. Rafiki usually gets his own room and is able to watch TV, sometime he feels like being mobile and will walk around the day ward if he is allowed. It is an exhausting day for us all. Even though I rarely get to go these days I spend the entire day worrying and wondering how it is going.

Patrick is amazing. He is so calm and focused. His entire attention is focused on Rafiki and what he needs. He still manages to keep him disciplined which I have a lot of trouble not to mention consistency. I don’t know how parents do it without military training. Patrick’s sleep deprivation drills in the army are paying off again. I think if he could get a week off from his duties he would sleep straight. He is running on high at all times, predicting and anticipating everything.

The boys have a lot of fun together. Rafiki often turns to his Dad for help when I can’t understand him. Patrick is much more fluent in “Rafiki speak” than I am.

I am working 6 days a week now which adds to the challenge, one I didn’t really expect. I work 5 days at the The Longmont Times-Call and 1 day, Mondays my day off from the paper, teaching at the Art Institute of Colorado in Denver. I love both jobs but is really hard to focus on both.

I am teaching a basic photojournalism class for the first time this quarter. Being a first time teacher my students are getting away with a lot, partly due to me being new and the other part due to my lack of organization. The students are great. I was a bit nervous about getting started as this is a required class and this is an art school. I imagined a lot of students wouldn’t be to into but this quarter all seem to be making a concerted effort and excepting the challenge.

We recently had layoffs at the paper and the photo department luckily escaped but I we won’t the next time. Being the last hired I am a bit concerned.. I guess more than a bit as our insurance is tied to work. Newspapers are dying everywhere and we have discussed it amongst ourselves and realize that probably this is the last newspaper job we will have. With that idea running through my head I am trying to make a good impression at the college. I think I would really enjoy teaching there more but I also would like to have one foot in the newspaper staying current with news and the trends.

I had the privilege of covering the Democratic convention when it was here the last week of August. Unfortunately, I wasn’t credentialed to be on the floor at the Pepsi Center or go to Mile High. I got to be in the thick of it on the streets and I also was able to help out one of our photographers who on the floor for all the excitement. I got to hang with the media and be around the excitement and run into people like Al Sharpton and Ralph Nader.. probably a few others but had no clue who they were.

For the first time in my voting history I really do feel excited about voting. I don’t feel like it is the lesser of two evils which is what I have always heard from my parents growing up ever since I knew what a president was.

The first day of the convention I was teaching. When I left the college a riot was breaking out just a few blocks away. I quickly got to a parking spot and was able to get some shots and witness the scene for myself... another blog for another time!

So needless to say as exciting as it all was I didn’t see the family much. I never expected the challenges of coming back into this career with a family. Patrick is extremely supportive an encourages me to do my best work no matter how long it takes.

So we have been adjusting. I had the first month we were home off to help us try and get settled in. In my usual style I was trying to do to much with little time and often made things hectic for the house hold. It was great to have real time together in our own space. Rafiki was quite strong when we arrived and we were able to to do a bit of socializing when we got back. Everyone was thrilled to see him.

Kiss the ground

Getting here was actually the easy part. Once we were given the green light to come back to the States. I immediately booked us tickets home. Always a challenge especially with British Airways, we at least managed to get on the same flight, seats together were another story. I felt we needed to go sooner rather than later although there are always things to do and friends to see. I felt the time on the other end would be more beneficially for us.

We were also fighting the clock against a pregnant cat our in-laws had. One of the Lindsell's cats, became pregnant while we are there and as she grew so did our worry. New pets and especially baby animals are big bacteria no-nos for Rafiki and I am sure if we were around for the exciting moment of motherhood, Rafiki would want to join in with his cousins holding and petting each and ever kitty. We beat the kittens arrival by a week.

I booked tickets for us to come home June 11th. There was a lot to get done before leaving especially figuring out how we were going to get all the stuff we had accumulated home. Now that Rafiki is two and we basically pay full price for his seat, he had a baggage allowance thankfully. Rafiki had one huge duffle bag just of his toys and books; all the thoughtful presents friends and family had sent for his birthday and his hospital stay.

I am incapable of traveling light. My Dad always is surprised that I mange to fit 20 pounds of stuff into a 10 pound bag. Between the three of us we had-2 camera bags, 1 laptop bag, diaper bag, 2 carry-ons, purse, stroller and 4 giant duffle bags. We had so much stuff we had to do a trial run in the car to see if we could even make it to the airport with all our kit. Liz, our sister -in-law only had a small Land Rover.
http://www.analogstereo.com/images/om/land_rover_freelander.jp

It sounds big but was only big in the gas prices. A full tank of diesel in England cost us $120. So with painstaking precision Patrick got it all in leaving room for Liz to even see out the back window.

The 24 hour journey began with a 2 hour drive to the airport. At the airport we were told the prized bulk head seats I had tried so hard to get the few weeks before were already booked. This is after phone calls and emails to British Airways telling them we were traveling with a sick child. Everyone of the customer service people said they would make note of it but there was nothing they could do until the day of the flight.

Patrick and Rafiki had originally flown British Airways over to London in February and had a variety of unhappy incidents and Patrick was not thrilled at the idea of flying them back. We are still waiting to see if they will give us any kind of refund for the tickets we lost when Rafiki became ill in March. It really is amazing how corporate and unfeeling people and organizations have become. A society of fear that doesn't allow employees to think and care about their customers because it might break the rules and maybe they could lose their job. Often I do find it hard to believe that the person I am speaking to is actually a human.

The woman booking us in at the airport, did have a heart however and tried her hardest to find us seats at least near each other. She was successful with that and also gave us access to the Big Executive club but we didn't' have time to take advantage of it. Rafiki and I toured the amazing facility which included a theater, a couple bars, massages, kids area, buffet and a view of the tarmack.

When she called to get us access to it, she quietly whispered to the person on the other line that the couple she was inquiring about were traveling with a critically ill child. My heart dropped I had never thought of our situation like that and it hit me in the chest with a lot of power. Already a bit stressed about the flight, getting through security and arriving safely I started to get a bit emotional. It is moments like those when I actually have a few seconds to see outside myself, see what other people see and realize, wow.. this is really our lives.

The flight went well and Rafiki was a star for most of it. He slept at least half of it. We managed to get through customs and immigration faster than I have ever before and were greeted by our good friends Julie Quihuiz and Mia Giard. Mia was a surprise we weren't expecting. Luckily we managed to fit all the kit in my Honda CR-V.

Because of our concern for us to get settled in immediately with our medical care. We booked an appointment to see the Dr. Greffe on the 12th the day after we arrived. We wanted to be prepared. If Rafiki's temperature gets above 100 we automatically go into the hospital as that is the first sign there may be an infection. If that were to happen we wanted to make sure we would be taken care of in the way we had been before.

Hoping that our visit would blow Patrick away was just enough to set me up for a disappointing result.

Of course the hospital was as gorgeous as I remember it. We got there early so we could get a bite to eat and have a look around. We started to hit a few little bumps in the road as we began our appointment. All being tired and anxious added to the situation. We were brought into an exam room which was incredibly sterile. The sight of it, sent Rafiki into tears, knowing only to well what he was in for. This was one of the rooms I had not seen, not that it really would have made a difference in the big picture but I was a little surprised. There wasn't a poster on the wall, not even an informational one and there was one book to read that was for middle schoolers and was a medical book not to exciting for Rafiki.

The nurse struggled to get Rafiki's vitals. His least favorite; getting his blood pressure taken which they try to do on his leg but have a hard time getting an accurate reading as most of the time he is hysterical.

After that was done the nurse brought Rafiki a nice noisy truck and that quieted him down for a bit. Dr. Greffe came in and we discussed all our adventures in the medical field so far and showed him the meds we had brought back with us. Rafiki seemed to be very comfortable with him. Rafiki does seem to favor male doctors.

We started to fill in the pieces and then of course came to the dreaded blood taking. Rafiki has a central line with an exterior port called a Groshong.

Central line: A catheter (tube) that is passed through a vein to end up in the thoracic (chest) portion of the vena cava (the large vein returning blood to the heart) or in the right atrium of the heart.
http://www.medterms.com/script/main/art.asp?articlekey=14394

The Groshong is a very common type of catheter in England but no so here.
http://www.rad.washington.edu/clinical/patinfo/interventional-radiology-clinic/Interventional-Procedures/vascular-access

So needless to say there has been a bit of confusion. The first attempts at taking Rafiki's blood from the Phlebotomist greatly concerned as, as access was not smooth and there was a struggle to get the blood taken and the line flushed clean.
It was quite the change from the last visit we had from our community nurse Janet Meikel in Stalbridge, in which Rafiki didn't even flinch the entire time.

We tried to describe the tools,syringes, and methods that they use in the UK but neither the nurse or the Phlebotomist was familiar with the groshong and it really surprised us. This was not something we anticipated.

I had met a lovely young girl, Zoey who is in the maintenance part of her chemo here in Fort Collins before I left. When I met with her and her family Zoey generously let me see and feel her central line which was under the skin and requires an injection. At the time I just figured different kids had different port for different reasons, and I really had no reason to believe that the groshong would not be used here.

Rafiki a brave boy quickly recovered and was up for exploring the hospital. On the ride home I asked Patrick what he thought and in his typical style said he was going to reserve judgement.

Fair enough. For right now I was just glad to be back home and in our own space and together.

Decisions

Patrick and I haven't had much of chance to talk but he knew I was pushing for us to return to the States. The weeks apart have been so hard for both of us, and as my good friend Mia has said we both have been fighting the same war but in different trenches. There is no way I can even begin to know what he has gone through caring for Rafiki alone and not letting him out of his sight for even a second. The first month was the hardest when Rafiki was on Dexamothazone, steroids.

Dexamethasone (also called Decadron¨) is a man-made steroid medicine. It works like a natural steroid that is made in your body. This medicine has several uses:
• to relieve inflammation (swelling, heat, redness, and pain)
• to treat certain types of cancer
• to treat severe allergies and asthma
• to treat nausea and vomiting


Rafiki was a hand full feeling all the side effect that the drug has to offer. Eating all the time, not sleeping, grumpy, moody, and also in a far bit of pain not able to walk. The nurses at the hospital call kids on the drug DEX babies.

The side effects seem endless but it is very effective with this treatment

Possible side effects
Early
• Stomach irritation (burning)

Late (usually more than a day after treatment starts)
• Headache
• Dizziness
• Changes in personality and mood
• Increased appetite
• Problems sleeping
• Acne
• Eye problems (cataracts, glaucoma)
• Weight gain, mainly in the face and abdomen
• Water retention that can increase the blood pressure
• Increased white blood count, but decreased numbers of infection-fighting cells
• Increased blood sugar levels
• Decreased potassium levels in the blood, especially if you are taking other medicines that also decrease potassium levels in the blood

After taking dexamethasone for a long time
• Decreased muscle mass and muscle weakness
• Impaired wound healing
• Decreased growth
• Thin fragile skin
• Weakened bones

In and out of the hospital Patrick is not one to ask for help in any capacity. He takes all the burden himself rather than burden someone else even though there is a long list of people would love for the opportunity to help.

We finally decided that we would return to the States sometime mid-May. Over the last 6 weeks of being separated I have thought and rethought about the decision to stay in England or move back to the States. I have come to realize that no matter which decision we make there will always be a price to pay whether that is financial or mental. We aren't going to get out of this situation without paying a price somewhere along the line. Of course this doesn't even take into consideration the price Rafiki pays as a sick child every day.

Since the beginning of this journey, the medical staff here in England have been incredible.

Southampton General Hospital
http://www.suht.nhs.uk/index.cfm?articleid=1694

Dorset Community Hospital
http://www.dch.org.uk/


Although both Patrick and I have been out of minds with worry for our son the doctors and nurses never gave us anything more to worry about. They have always been confident, clear and comforting dealing with us. They reassured us at ever step often easing our fears about the future and Rafiki's treatment. To be honest the hardest part of this journey was in the beginning, not knowing or understanding and carrying the hope that this was all a big mistake, the denial was overpowering. I think in some ways I am still in denial as I have missed such a horrendous part of the treatment and I see my lovely little 2 year-old old running around, playing and laughing and trying to keep up with his cousins.

When I thanked one of the many wonderful nurses, Leigh Shaw, she said it was just her job. Although that might be the case there aren't enough thanks that can go out to these wonderful people.
They are sure we will get the same treatment back in the States but again the unknown is the hardest part. My only regret I have is that I didn't get pictures of all these wonderful people to bring home with us.

I have begun to see Rafiki again in his new body He has lost a lot of the weight and puffiness he got while on the DEX. I have realized that the little boy who went to Zimbabwe in February of 2008, is gone, and he would have been gone regardless. He is growing and the cliches about it happening so fast are true. He is going to be growing while he has this disease, and when we reach the other side he will be a whole new person. He will be a whole new person in 3 years time even if he weren't' sick. I carry the image a friend of mine gave me imagining Rafiki walking through the doors into his first day of kindergarten a totally healthy little boy.

I have been anxious to return sooner than later as I feel we will need a lot of time on the other end to settle in. I have been pushing Patrick to make a decision and I haven't been as gently as I probably should have.

We decided that once Rafiki had his Minimal residual disease, MRD test( MRD stands for Minimal Residual Disease. It is a term that simply put means that they detect leukemia cells with a much greater sensitivity than they did in the early days of childhood leukemia treatment. Instead of looking at 100 cells and finding 1 leukemia cell, they can now look at 10,000 cells and find 1 leukemia cell. this is a great place to get a better understanding for the MRD http://atlasgeneticsoncology.org/Deep/MinResidDisID20007.html)

and we had a chance to talk to our consultant, Dr. Janice Kohler, who is an amazing woman and doctor. We would make plans to go. We won't receive the results for a few weeks but we do feel confident that we are still in remission.
As we waited for Rafiki to be called for his treatment at the hospital last week, we were able to talk to Dr. Kohler who first indicted to us that Rafiki is doing very well and right on track with where he should be. She was impressed with how he looked and was acting. I believe it had been about 3 to 4 weeks since she last saw him and he was quite the different little character both physically and mentally.


She knew I had been doing research in the States to find out about treatment there and what our options were. She asked what I had found out and that is when I told her we would be retuning to the States. It was a very difficult sentence to get out and I could see Patrick's eyes well up a bit with tears. It is amazing how you bond with people in tragedy and I think Patrick considered the staff at both Southampton General and Dorset county family if not even angles and saints.

We realize we are taking a risk by moving and I think we are both anxious about the trip and the future.
I have booked a ticket for us to return to the States on June 11th. I feel a bit nervous in that if Rafiki's health changes in the slightest we may have to cancel our flight.

Our lives are completely about one step one day at a time now.

Stalbridge Vilage

Kate, my 11 year-old niece came to me to tell me she had been invited to a party. An 18th, as they call them here, which I have come to understand is quite a big deal here. A classmate of Kate's who is the sister of the girl turning 18 had invited her and she was allowed to bring another person. She invited me. Always up for a party, I accepted thinking that it would be a bunch of teenagers standing around doing their thing and a few younger kids running around on the fringes admiring the older kids with a couple adult chaperones. I was sure it would be a interesting cultural experience.

Kate was so excited for the days leading up to the party, talking about what we would wear, putting on makeup and doing our hair. To be honest I was getting pretty excited to. I remember those days before parties and getting ready with friends in the bathroom sharing a laugh.

The party was at the village hall, just a few blocks down from the Lindsells house. I made sure we were fashionably late as I was sure of one thing I didn't want to be the first to arrive into a huge empty hall.

We arrived in perfect time and to my surprise it was packed with adults and had a little bar with a few beer taps, bottles of wine and liquor. Kate shyly introduced me to her friend, Pippa and her sister Sarah who was turning 18th, both beautiful girls- real natural beauties. At first I mistakingly took Pippa, the 11-year -old as the 18 year-old when I first arrived as she was about a foot taller than Kate and had started to develop as a young lady. Kate's other friends who were also at the party were also a bit more mature physically and I felt a bit sorry for Kate a bit. It doesn't seem to bother Kate though and I think she barely notices much. She excels in a variety of sports, especially swimming which she continues to place first in all her races; has a great sense of humor and is very caring person. She has a lot of energy and likes to have fun.

Of course I headed straight for the bar where the beer was poured into plastic pint glasses, kind of cute I thought. Kate got a Coke and we headed of for spot where we would sit and watch people. We chatted with a few people and one fellow over heard that I was staying with the Lindsells. He knew them and actually went to school with Kate's father Ed in Zimbabwe. A great jolly fellow, Steve, originally from Zambia chatted with us and continued to buy me pints. We talked about Africa, the states of affairs in Zimbabwe and village life in England. His wife Kate, who is English worked at the post office and after we had all enjoyed a few drinks we got the gossip on the village.

Stalbridge is a very small village in Dorset county which is southwest of London and relatively near the sea. It is very rural, surrounded by small farms. It is quite pretty actually and incredibly gorgeous when the sun actually shines. The landscape is a variety of brilliant greens and at the moment there are wonderful fields of Canola, which are bright yellow and break up the landscape in squares of color.

http://www.pagemost.com/Stalbridge-Dorset

The village of Stalbridge, doesn't consist of much the basics really a post-office, butcher, lawyer, fish and chips shop, chinese take away, a couple charity shops, a couple churches and a huge glamourous new grocery store which is a bit out of character for a small village like this. I imagine it brings in people from all the surrounding villages. There is some discontent in the community about the shop as you could say it is so sort of a Walmart on a much smaller scale. It sells everything and is close to putting some of the smaller shops in the village out of business.

The village has a strange feel, it isn't like any of the other near by villages we have gone through. I can't really put my finger on it but I guess I would say it doesn't have the quaint feel and energy that some of the other villages do. It is definitely not as picturesque as the others where all you want to do is capture its charm.

As we drank our drinks more and more people came in, people of all ages. It was incredible, the place filled up and was packed in about 30-minutes. Most of the adults were hanging around the bar, the teenagers were outside away from parents and the middle school kids were hanging around the DJ waiting for the disco to start. It was so packed at one point you really couldn't move around. It felt like the whole village was there. The disco finally started complete with smoke machine and laser lights and the little kids went crazy for it. Dancing and singing to all the latest trendy songs. I joined in a bit but recently blew out my knee so I wasn't able to shake my booty as I usually do. I was invited to come and dance with 2 single ladies who were cutting it up. They heard I was on my own and from America and I guess felt sorry for me. Kate had a great time with her friends. I let her use my camera for a few shots so she was a popular gal for that.

We had a curfew of 11pm and in my typical style pushed it to 11:30pm. We walked back to the house, carrying on as if the pub had just closed down talking about how fun the party was stopping to take a few night shots here and there. I think both of us could have and would have liked to stay out later but I didn't want to get Kate in trouble, later we found out we could have stayed out as long as we liked. Oh well! it was a great cultural experience.

Stalbridge Village

Kate, my 11 year-old niece came to me to tell me she had been invited to a party. An 18th, as they call them here, which I have come to understand is quite a big deal here. A classmate of Kate's who is the sister of the girl turning 18 had invited her and she was allowed to bring another person. She invited me. Always up for a party, I accepted thinking that it would be a bunch of teenagers standing around doing their thing and few younger kids running around on the fringes admiring the older kids with a couple adult chaperons. I was sure it would be a interesting cultural experience.

Kate was so excited for the days leading up to the party, talking about what we wear, putting on makeup and doing our hair. To be honest I was getting pretty excited to. I remember those days before parties and getting ready with friends in the bathroom sharing a laugh.

The party was at the village hall, just a few blocks down from the Lindsells house. I made sure we were fashionably late as I was sure of one thing I didn't want to be the first to arrive into a huge empty hall.

We arrived in perfect time and to my surprise it was packed with adults and had a little bar with a few taps of beer.bottles of wine and liquor. Kate shyly introduced me to her friend, Pippa and her sister Sarah who was turning 18th, both beautiful girls- real natural beauties. At first I mistakingly took Pippa, the 11-year -old as the 18 year-old when I first arrived as she was about a foot taller than Kate and had started to develop as a young lady. Kate's other friends that were also at the party wree also a bit more mature physically and I felt a bit sorry for Kate a bit. It doesn't seem to bother Kate though and I think she barely notices much. She excels in a variety of sports, especially swimming which she continues to place first in her races, has a great sense of humor and is very caring person. She has a lot of energy and just likes to have fun.

Of course I headed straight for the bar where the beer was poured into plastic pint glasses kind of cute I thought. Kate got a Coke and we headed fo ra spot where we would sit and watch people. We chatted with a few people and one fellow over heard that I was staying with the Lindsells. He knew them and actually went to school with Kate's father Ed in Zimbabwe. A great jolly fellow, Steve, originally from Zambia chatted with us and continued to buy me pints. We talked about Africa, the states of affairs in Zimbabwe and village life. His wife Kate, who is English worked at the post office and after we had all enjoyed a few drinks we got the gossip on the village.

Stalbridge is a very small village in Dorset county which is southwest of London and relatively near the sea. It is very rural, surrounded by small farms. It is quite pretty actually and incredibly gorgeous when the sun actually shines. The landscape is a variety of brilliant greens and at the moment there are wonderful fields of canola, which are bright yellow and break up the landscape in squares of color.

http://www.pagemost.com/Stalbridge-Dorset

The village of Stalbridge, doesn't have much, the basics mostly a post-office, butcher, lawyer, fish and chips shop, chinese take away, a couple charity shops, a couple churches and a huge glamourous new grocery store which is a bit out of character for a small village like this. I imagine it brings in people from all the surrounding villages. There is some discontent in the community about the shop as you could say it is so sort of a Walmart on a much smaller scale. It sells everything and is close to putting some of the smaller shops in the village out of business.

The village has a strange feel, it isn't like any of the other near by villages we have gone through. I can't really put my finger on it but I guess I would say it doesn't have the quaint feel and energy that some of the other villages do. It is definitely not as picturesque as the others that is for sure, where all you want to do is capture its charm.

As we drank our drinks more and more people came in, people of all ages. It was incredible, the place filled up and was packed in about 30-minutes. Most of the adults were hanging around the bar, the teenagers were outside, away from parents and the middle school kids were hanging around the DJ waiting for the disco to start. It was so packed at one point you really couldn't move around. It felt like the whole village was there. The disco finally started complete with smoke machine and laser lights and the little kids went crazy for it. Dancing and singing to all the latest trendy songs. I joined in a bit but recently blew out my knee so I wasn't able to shake my booty as I usually do. I was invited to come and dance with 2 single ladies who were cutting it up. They heard I was on my own and from America and I guess felt sorry for me. Kate had a great time with her friends. I let her use my camera for a few shots so she was a popular gal for that.

We had a curfew of 11pm and in my typical style pushed it to 11:30pm.We walked back to the house, carrying on as if the pub had just closed down talking about how fun the party was stopping to take a few night shots here and there. I think both of us could have and would have like to stay out later but I didn't want to get Kate in trouble, later we found out we could have stayed out as long as we liked. Oh well!

The Wedding

It is hard to believe that I have been here 3 weeks already. It isn't flying by in fact it feels quite slow. This morning I woke up early and couldn't sleep thinking of all that I could be doing at home including working. I am so limited here by almost everything and I can't wait to make a date to come home and have light at the end of the tunnel.

Rafiki got out of the hospital 2 nights after his admittance when I arrived on the 10th. The good thing was he never got worse. His temperature fluctuated and he wasn't quite himself. We all felt a bit safer having him in the hospital under the watchful eyes of the hospital staff. He was already on antibiotics for another issue so we felt relatively safe about the situation. I imagine this will be a fairly common occurrence during the next 3 years. Always playing it safe and never doubting that a little thing could be a big thing.

I had a few days with the little guy and it was amazing to see how much he has grown into a toddler. He is really 2 now, complete with tantrums and the over use of No! and Mine! Although it is difficult I love it. I just love being able to be with him again and hearing him call me Momma. He has started pretending and imagining with his stuffed animals, he sings his own little made up songs, mimics what we say and tries to read. He has discovered his pockets which he loves putting coins into them. He calls money millwall, we have no idea why.

Rafiki has a lot of energy and is constantly trying to get his cousins to play and keep up with them when they are off on their own. The Lindsells (UK) have a big trampoline which he always wants to jump on and be a part of the big kid fun. There are a few neighborhood girls who are always over and love having Rafiki around. Rafiki has quite the harem now.

We were all getting use to each other when I had to leave again to go down to London to sort out a few things and get ready for my girlfriend Gill's wedding when I left Thursday the 15th. I felt a bit guilty about leaving Patrick on his own again and having time to myself when I only just arrived.

I took the train down to London, which really was a beautiful ride. The English country side at the moment is gorgeous; green and everything classic you would picture the country side to be. Unfortunately, the train I got on was an early one and cost me $80 for a 2 hour train ride, that stung a bit and was a bit of a shocker.

After arriving In London I spent most of the day on the phone with British Airways trying to change my ticket home and see if I could work on getting a refund for the 2 tickets we lost when Rafiki got sick in Zimbabwe. I didn't get very far with them as usual. I was hoping to be able to get a ticket for us all to fly back together but after Patrick's last few flights he doesn't want to fly back on British Airways, so it looks like we won't be flying back on the same flight anyway. Patrick feels confident he can do it on his own.

Friday, my good friend and photographer Bex met me to have a wreckee of the location for the wedding and plan out the shots. Gill and Charles put us up in a pub hotel which was fun and quite quaint. We had a nice pub dinner, a few pints and met some of Gill's relatives who are from "up North" near Manchester.

There is a bit of a war that goes on here between the English of the North and the those in the South.. mostly Londoners. I can't say what it really is about but I imagine it is something similar to the Northern California/ So Cal divide. They say the North has soul.. and that is where a lot of the music comes from. I have never spent any time up there but there accent sure is thick.

To be honest I was a bit neverosu about the wedding and glad to have Bex around. I love shooting friends weddings because I get to be a part of all the intimate details and I am able to spend more time with the bride and groom than the average guest but there is added pressure of making the best pictures possible as well since you will still have these friends in your life.. hopefully.

Saturday morning arrived and brought with it traditional grey and rainy skies. It was a disappointment to Gill and Charles and probably us as the photographers. For the guests I think it was just par of the course and they would have enjoyed the beauty of the wedding and the joining of their family no matter what.

The wedding was one of a life time. Gill and Charles were married in a beautiful 18th century gallery, after the ceremony, some champagne, appetizers and group photos, we took a short walk to the Thames to board a dinner boat. The three hour cruise down the river with a sit down dinner took us past the amazing scenery and landscape of London. It was amazing but the down pour of rain and gusty wind made it a bit challenging for the images we had hoped for. Despite the preconceived images we had in mind we still managed to make some incredible images and as usual over shot it just a tad... between the 2 of us we shot about 4000 images.

After the cruise we boarded a route master.. an old double decker bus. We traveled through the city past all the landmarks until we arrived at the The Crown a wonderful pub in Richmond. Where another 150 guests, a band and amazing food greeted us. It was hard to believe we had another few hours of partying and carrying on. I don't know how the bride and groom kept up their energy as we had all been up getting ready for the big event since early the early morning.

The wedding was stunning, with the bride wearing a lovely full length rich red dress with an elegant white beaded bodice. Her bridesmaids in gun metal satin and the groomsmen in full top and tails complimented the bride and groom with great elegance.


Gill and Charles are such an amazing friends. It was incredible to be a part of their union. They generously offered to loan Patrick and one of their cars. I originally declined but rethought about it and realized what an opportunity if would be for us to have a bit of independence.


Unfortunately, I couldn't get on their insurance without a UK driver's license but secretly that was OK with me. I spent 4 years here never wanted or attempting to learn to drive here which was fine for me. With my track record driving I wasn't thrilled about the possibility of me driving 3 hours away to get back to the boys.

Fortunately, for us great Zimbabwean friends of ours noticed my addition to Facebook and learned about Rafiki's illness. It has been so difficult to tell people especially the ones closest to us that there are still so many people we haven't told. I hate for people to find out through an impersonal way but it has helped us in our communication.

As most people have offered to help in anyway they can once they found out, Caz and Bren Sole reacted no differently. One thing have IO have learned through this situation is that we really can't make this journey without the help of others and to take advantage of people's offers of help should be something we are ashamed of. It is difficult to accept but as many of my friends have told me people want to help and it makes people feel good to think that they actually are.


I asked Bren if he wouldn't mind picking me up and helping me take the car back up to Stalbridge. It wasn't a small favor to ask as the drive back to the Lindsells ( UK) was a 2-3 hour drive and then Bren would have to take a train back down to London which would be another 2 hours. There wasn't a bit of hesitation as Bren agreed to met me Monday morning and drive the car for me. We are so thankful and blessed to have such amazing friends.

Return

The plane was almost 2 hours late. An hour in Denver, a half an hour on the tarmac in London, and another half an hour standing in the plane waiting for the doors to be opened.

I was greeted by my smiling and lovely friends Gill and Charles. which is always the best, nothing beats being greeted at the airport when you arrive, even if there isn't a sign there for you.


It was a gorgeous day which I didn't expect being England and all. We went straight off to the wedding venue, the Orleans House, a gorgeous, 18th century home/gallery where the ceremony will be, right on the river Thames.

We had a quick wreckee of the room where the ceremony will be. A lovely detailed little room in gold, white and light blue, full of ornate relief and lots of cherubs.
We planned a few of the shots hoping and praying for good weather and then had a bite to eat in the refurbished stables before heading off to catch the train.

http://www.richmond.gov.uk/home/leisure_and_culture/arts/orleans_house_gallery.htm

I know it would be difficult to travel on the train with my luggage. Overwhelming really. I had to change trains in Waterloo to get on the train for Templecombe. I was on the end train where one of the conductors worked. I asked him if there were porters at the station, knowing that there really wouldn't be. He did tell me that there were trolleys though. He was wonderful and when the train stopped he helped me off with my 2 huge and heavy duffle bags and tracked me down a trolley. I have to admit I did play the part a bit of the dumb tourist.

Ian, I finally came to find out his name, watched my bags as I found out the train times, and then loaned me his company phone so I could call the Lindsells and let them know when I would arrive. He was on a 2 hour break and decided to sit and chat with me. It was really quite nice and comforting. I told him about our situation and of course he felt staying in England was the best.

He did say something that is staying with me and haunting me a little. He told me of a man he worked with who had some kind of cancer or illness. It took him months of leave to sort it out and just when he was getting back on his feet his teenage son also came down with some form of cancer. He said when one thing happens another always follows. I am hoping in our case that our other things is what is happening in Zimbabwe. Horrible to stay but I don't know what we would do if were hit with something else.

It makes me wonder about the decision to come home. Although everything here costs an arm and a leg, the weather sucks, the people are... well... English. The socialist system does seem to work when you have a devastating illness. When living here of course I never thought that; as we watched 40% of Patrick's wages go to people living on the dole, teenagers and adults hanging out in the pub drinking beer and eating fast food never thinking about the possibility of a job. Now.. I think a bit differently esp. after spending time on the children's cancer ward on my last visit. The idea that you have to spend your life savings, or work doubly hard to save the life of your child or even your self somehow doesn't seem to make a lot of sense.

Yesterday as we were leaving the hospital and the nurse was piling on all the meds, syringes, and rubber gloves, I couldn't help but think will my stomach turn every-time that happens when we go to the hospital in the states and I have to think how much is that going to cost me. There is so much about this situation that you can't put a value on. How much would it be worth not to have to think about money for the treatment of Rafiki?

There are community nurses who come to the house, social workers who also visit and help you find solutions to your problems. Will that be available to us in the States for no cost? I don't know but for now it is a huge comfort knowing it is here if and when we need it.

Ian got me settled on the train and we said goodbye. He was an older man with a kind face and I felt he represented another good omen in our journey. I got my window and seat and immediately feel asleep. I woke up 20 minutes later with a new passenger at my side, immediately feel back asleep again and woke up another 20-minutes later. This went on for the next hour and half each time waking up to someone new. I was bit nervous about my things but I felt I had to trust that nothing would happen as I couldn't keep my eyes open. About a half an hour away from my stop I realized I had to stay awake or I would miss my stop and end up God knows where.

When I arrived my heart dropped as I saw the only way to get across the tracks to be picked up was up and over a bridge. I just stood there in bewilderment and out of no where a woman came to my aid and asked me if I needed help. I accepted of course but Edward, Patrick's brother and his daughter Kate soon arrived and helped me haul my kit to the other side.

The train station was only about 15 minutes from the house but when I arrived Liz ( sister-in-law) was rushing to the car and told me the boys were on the way to the hospital. My heart sunk. I rushed inside and Patrick was headed for the door pushing my feverish little monkey out in his stroller. All I wanted to do was hug the little guy and hold him, but he turned his head from me and wouldn't even look at me.

I don't think I even gave Patrick a hug.

We loaded up the car and I jumped in as we rushed off to the local hospital in Dorchester.
http://www.dch.org.uk/index.html

We went straight to the children's ward and immediately got a room. We were seen by the nurses and doctors who were all pleased to see the Mum had finally arrived.

The good thing was they didn't' seem to be to worried but Rafiki's fever had been increasing. They wanted to do a chest x-ray and a few tests that night. It was late and the room was small, room for only one bed. I knew Liz probably didn't want to stay long esp. since it was a half an hour ride home and it was already 11pm. Patrick and I decided the best thing for me to do was go home and get some rest especially since he had it under control. I felt terribly guilty about it which I am sure is going to be a theme throughout this journey but I really couldn't' have done much

We made it home and I didn't get out of bed until 12:30pm the next day.

Fundraising Bash!

A bash it was!
Unbelievable!
Amazing!


We pulled it off with less then a month of planning. The generosity of the community was overwhelming; not only in the donations that were given to us to auction off but in the outpouring of support on the actually day.

Mia (Girard), my back bone, my constant support, had such insight into how the auction should run it was uncanny, it helped that she had been to a few auctions before. Believe it or not I never have been to an auction; Rafiki's was the first. We were lent a fundraising book from a friend who works at non-profit organization and we were surprised at how many of the suggestions for running a successful auction we had already put into play just by our fore thought and planning.

The auction items just kept coming in all the way to the end, photographers brought in prints, more gift certificates, more art, even another time share for 2 nights in Steamboat Springs.
We had over 20 gift certificates, ranging in value from $150 to $25 from restaurants, hair salons, massages, tattoos, clothing etc.

The whole night flowed with miraculous ease. I didn't do a thing to collect donations, they found us. One amazing stories was from a reporter I work with, Rachel Carter, who wrote about the fundraising bash and auction on her My Space page. A few of her fans read it and we received another restaurant gift certificate and a custom skateboard, from a guy who lives in Seattle and just happened to be in town. He even came to the auction. He was so willing to help and repeatedly told me if there is anything he could do just let him know. I really can't describe the feeling I got with all the outpouring of love and support, especially since a large portion of it was from people who never met us before.

We had a tight timeline which we had to stick to and that would be the one thing that I would change for future events. It would have been nice to have more time to for the silent auction, a few of the items went at bit below their actually value.

Friends came up from Denver, Longmont, Loveland and Boulder and most had never even met Rafiki or Patrick which I find so phenomenal.

I planned a speech and a slideshow for the evening. When I got up for the speech most of the folks were busy with the silent auction and having a beer. Joe (Vader) got their attention and I swear you could have heard a pin drop, in a packed bar, a pin drop and all eyes on me. Of course it was a bit nerve wrecking and luckily I had my notes, which I did my best to stick to as my hands shook.

I talked about the ripple effect and how many of the people there had come because they heard about the event through a friend and it spread from there. How the response said so much about the community and I couldn't wait to bring this feeling back to Rafiki and Patrick.

Because I had everyone's attention I felt I also needed to take the opportunity to bring awareness about Zimbabwe. I didn't go into any of the personal issues about the farm being taken over because I knew that could get complicated. I basically asked people to stop, listen and read if they heard or saw anything about Zimbabwe in the news, that what was going on there is a genocide and people need to be aware of that.

I talked briefly about Patrick and Rafiki's stay in the hospital in Zimbabwe which I am sure most people found horrifying and unbelievable, as do I. When Patrick sees Children's in Denver for the first time he is going to go into complete culture shock.

I gave a bit of history about Rafiki's health and how it was the Leukemia was discovered. When I mentioned Rafiki is in remission I got a huge round of applause, which I really didn't' expect, I could feel the tears about to jump out but quickly took a deep breath and held them in. I was determined not to cry!

We then took a group photo with a sign Bell and Evan (Girard) made welcoming back Patrick and Rafiki. I just want Patrick to know how many wonderful people are behind us and want to do what ever they can to help. There were so many people we couldn't even fit in the shot but the visual reference is certainly there.

We showed the slide show but it was a bit challenging with all the excitement and chatter. I few folks caught the images and complimented me on the photography. It was a bit self indulgent. But as my good friend Pat Farrington said this is the time to be self indulgent and this is what it is all about.

The sports writers at the Times-Call,( www.timescall.com) especially Justin William came through in spades. The piece de resistance in the sports department was a hockey stick autographed by Joe Sakic, the Colorado Avalanche captain. It went for $600! I couldn't believe it as the bids kept rising and rising. Poor Justin who was very impressed with himself when he presented me with the stick was a tad disappointed at the fact I had no idea who Joe Sakic was. I haven't really been paying much attention to big sports players lately unless they are in the news for murder, rape or dog fighting. I still idealize Joe Montana and Larry Bird.. do they still play? There was also a nice little bidding war over a basketball from Carmelo Anthony a Colorado Nuggets player. It was great fun to watch the tension between the two bidders.

Joe was an amazing auctioneer, who tried to constantly reassure me before hand I had nothing to worry about, as I continually rang him up with more " what about?" What ifs?" His humor, descriptions of items being sold, and auctioneer skills got everyone in the mood and having a great time. I think even the photographers who donated their photos were surprised and pleased at the same time as they watched the bids go up on their gorgeous work.

We roped in a few other volunteers for the live auction Karin, Julie Q and Mia's brother-in-law Paul to help with spotting out bidders and giving them winning receipts. Paul a giant and powerful presence added to the show of the auction standing on stage with Joe and pointing out bidders with a loud "Oh!"

Bell and Evan ran to find me after we hit it big on the time share jumping up and down to tell me we that we made over a thousand dollars on it.

Paul was so pumped up with adrenaline by the whole event when we finished and we saw each other he gave me a huge hug picked me twirled me around and we both hollered! It was such a rush to watch item after item rise and rise exceeding all of our expectations.

As the auction proceeded a few people came up to me and told me that their faith in humanity had been returned. Wow! How does one respond to that.

" We are supposed to be in the middle of a recession and look at this outpouring," said one supporter.

Two wonderful women from the community came up to me and mentioned that had never met me but know Patrick and Rafiki from the park and had come to show their support.

A guy sitting at the bar who just happened to be there for a drink and saw what was happening charged a $100 on his credit card, because he felt for us. Mia told me of a story of a man who was looking for something to buy in the silent auction couldn't find anything he liked and ended up throwing in some money into the tip jar, later as she counted it, she saw it was $250. We still don't know who the mystery man is but a big thank you goes out to him.

A girl in her 20's who I had never met before came up to me and told me of a coworker of hers whose son had recently been diagnosed with cancer and was struggling financially. She asked me how I pulled this off. She said I was amazing and so inspirational. To be honest my jaw dropped a bit, I had never thought of myself like that. How I pulled it off? Well it just pulled itself off really. I still feel the success of the fundraiser had more to do with the community than me as a person, and I feel proud to be a member of it.

People truly want to help. Hugs and wishes of support came from everyone.

The energy and buzz of the whole evening was overwhelming and the most interesting aspect of it was that everyone there felt it. I had the biggest smile on my face and just keep kissing and hugging everyone. At this point I still had no idea of what we had made and to be honest I didn't even care. The support and energy was and is priceless.

Mia, bless her heart missed the whole thing as she busily keep everything in order and collected money. Bell's friend Hannah, 9, and her mom Lynn helped to tally up the money. Once it was counted Hannah and Mia presented me with the total and I couldn't believe it. Hannah was so proud to have been a part of the whole event and was also grinning from hear to ear. I never let myself dream or think about what we might be able to make but I sure was shocked and overwhelmed by the total, and that is when I could no longer hold back the tears. The generosity of everyone melted me.


I didn't sleep much that night and woke up with a huge smile on my face. I couldn't wait to tell Patrick. When I rang and I finally got the chance to tell him, I asked him to guess what he thought we made. He guessed $500, I am not sure if he was just trying to be nice or not but I do think he was blown away, and at the same time had no idea what that meant. A few mortgage payments, tickets for us to fly back to the States and a start on our medical payments. but most of all a bit of time and a giant weight off my shoulders for a while. An opportunity for me to focus on Rafiki and not worry about ever cent we are about to owe. Some peace of mind and that once again that is priceless.

Auction Items

Rafiki’s Journey Fundraising Bash
May 8th, 2008
Lucky Joe’s Fort Collins, Colorado


Live Auction items
Begins 7:00
ß Broncos practice jersey- never been washed!

ß Chicago Bears signed Jersey-Brian Urlecker

ß Tiffany earrings

ß An autographed bat from Rockies Troy Tulowitzki

ß Autographed baseball from Rockies Todd Helton

ß Hockey Stick-Avalanche Joe Sakic

ß 2 passes Roller Mountain Roller Girls Derby Passes-

ß Broncos Selvin Young #35 –autographed football

ß Nuggets Autographed Baseketball- Carmelo Anthony

ß 7 nights at Celebrity Resorts Steamboat Springs August 1-Augsut 8, 2008 sleeps 6

PHOTOS- Colorado Photographers
ß Elk fighting Josh Duplician
ß Todd HeltonLewis Geyer
ß .Cowboy -Josh Buck
ß “Cowboy up” Rick Hackett
ß Cbina -Jackie Endlsey
ß Blue Heron – Paul Litman
ß Panorama Coors stadium- Josh Duplician


Silent Auction
Open at 6pm
Closes 7:15pm


PHOTOGRAPHY PORTRAIT SESSIONS-
ß Mary Piggen – Bare Bones Photography- Fort Collins

ß Nicole Joelle- Contempory Photography-Winsor

ß Shaun Hudson- Hudson Photography- Fort Collins

ß Patrick Kramer –Patrick Kramer Photography – Longmont



JEWELRY
ß Enamel pendent- Artist Mickey

ß You and Me Designs- Mia Girard
Double strand serpentine and silver necklace
Coin pearl and crystal necklace and matching earrings
Mother of pearl and coral necklace


COOL STUFF
Hand made walnut serving Tray – Tyler Morris Woodworking

American Crew- Men’s grooming kit Nicole Knauer of Nicole's Styling Studio

1554 New Beligum Hat

Red Sox - baby uniform

Nintendo Ds teenage Zombies-Victoria Cameron

Playstation 3 5 prologue- Victoria Cameron

Playstation 2 twisted metal Black-Victoria Cameron

Harvey Birdman: Attorney at Law for Nintendo Wii

Marna Widom-painting

4 tickets to Seasme Street Live in Colorado

2 passes to the Aggie

An autographed baseball from Rockies Larry Walker


New Beligum- Patagonia- Shirts
ß XL-grey short sleeve button down
ß XL-green sleeve button down
ß XL- long sleeve plaid button down
ß m-salmon

BAGS
Computer Bags
Red with hardware-
Black with hardware
Black computer bag
Green back pack


GIFT Certificates
$120 gift certificate Boulder Chop House- Amanda Reese

$150 Red Lion in Boulder- Amanda Reese

$100 Loveland Centerra Rock Bottom

$150 Tight Lines 1/2 day fly fishing per person 2 max - Mike Girard

$150 financial counseling or Life Coach – Rachel lane

$100 Gift Cert for Tribal Rites Tattoo- John & Curtis

$75 Hearne's Clothing and Shoes and Jewelry – Maia

$60 Life Touch Therapeutic Massage - Wendy Miller

$60 Life Touch Therapeutic Massage – Sarah Jane Baietti

$60 Party lite- Millissa Carlson

$ 50 Jax Penny Malsch

$ 50 Screaming Peach – Jen Eichhorn

$40 Plank Restaurant -Melise and Patrick

$38-Hair cut Kendra at Salon De Chelle- Kendra Bassett

$30 Rainbow Café- Gail, Lynn, Steve Jones, and Kathy

$25 Video to DVD transfer- Adam Silver productions

$25 Stamping up- Carey Payne

$25 Maya Cove Restaurant - Steve Fowler

$25 Gift Cert - Kansas City Kitty

$25 Henry’s –Loveland

Rafiki?

The photo was a large file and I was excited to see my baby finally, the picture loaded so big I could only see a portion of it and it was a bit out of focus. as I moved the mouse down and the pictured started to reveal, I saw a little boy but thought it might be a neighbor friend one of the cousins had coming around.

The boy was fat and had very little light blond hair, fuzz really. It was Rafiki. My son, I didn't even recognize my own son.

I feel terrible for that .. the movies.. .. a mother always knows her child no matter how torn up they are. I feel guilt for not recognizing my own child

I was shocked. I couldn't believe the transformation in Rafiki in a months time. It was incredible. Dramatic As I looked in amazement I did notice that in all the pictures he was happy. He didn't look like he was suffering or not wanting to play, he was with his cousins on the trampoline which I guess his his favorite pastime at the moment.


I couldn't bear it. I was at my friend Adam's finishing up a project when the messages came through. I had been waiting of pictures, begging of them. I hadn't seen anything in a whole month, it was a visual drought. I think that was why I was so socked. I had not seen the gradual transformation. I still can not believe it is my little boy.

I have been working with his pictures, using them for the fundraising promotions using a beautiful shot of him in Lee Martinez park in the fall, waving to me as I came to them at the park after work one day and the light was just right. He waved to me and I caught, when you see the picture you feel he is waving right to you, waiving for your to come over and join him and play.

In one of the pictures he looks like an old man.
His hands are chubby and swollen, he literally has ballooned he looks like has gained 15 pounds.

This was one of the worse days since the first day and the day I left the to return to the States. I had lots of good advice, people telling me he is the same little boy, the chemo is working and it is only temporary. Which I all know and believe but when I look at that little person it is hard for me to even see a hint of my son. Even his eyes, his signature feature seem to have changed.

There is no way I could have prepared for this. Patrick told me he wasn't the same little boy but I had no idea. I am sure you will all agree.

Am I an adult now?

I’m an adult now.
The journey getting here for the boys was an incredible one. I think not knowing the full story was probably the best thing for me. I had no idea how sick Rafiki is. For my gorgeous two-year old boy to not even ask to get out of bed is a pretty good indication of his state. He is weak and has trouble standing. He is uncomfortable and scared.

Rafiki was in surgery for his bone marrow test when I got to the hospital. Patrick went into the recovery room where he got on the gurney and held him tight. Rafiki saw me but I am sure it did not register that I had come from the states to be at his side. I tried to keep my distance a bit. Of course that was incredible hard as all I wanted to do was hug and squeeze him.

By this time, we had a pretty good idea that it was Leukemia. We just weren't sure what kind and at what level it was. The good news is that Rafiki’s is the most common kind, which is called “A.L.L.” His blood cell counts were all relatively good. The news that shocked me was how long the treatment is going to be. After the first month of intensive chemotherapy, he will have to be on treatment for an additional three years.

I was just thinking, do you become an adult when you buy a house? Get married? Have a child? Nope. I think it is being faced with the illness of a child. Not only will this be a test of our parenthood but us as individuals.

Thank god for Patrick and his brilliance.

How he really is doing

Sorry we are being so hard to reach, but we are here and we are fine
Friday went well, he had his vinchristin and they were happy with his blood results, just tested the numbers of different blood cells. Took a bit longer than expected, but Rafiki was quite happy to hop back into his old bed and watch his personal TV again

Back here it is taking some getting used to and organised for................. the result is that I am at it without much chance of a break, there is no routine yet and I dont know what will happen next... food pooh walk grumpy session sleep not sleep etc, so effectively I am 'on' 24 hrs, hence no e mail etc.

I have to try to sleep when he sleeps or I will be in trouble later. The new situation sets up new challenges, for example the kids want to play with him a lot, but he can only deal with so much, needs his space or he becomes very cross, so even if they are playing with him, I have to watch him to know when to get him his space, thats just one thing.

So it will take a while to even all these things out, so in the meantime I am having to do a lot more attention than at the hospital where the parameters were less. He is doing well, all the usual things that are difficult will continue to bother him, difficulty poohing as fast as he pumps it in, the mood swings, not being able to express what is bothering him, being afraid of being left by me, having to eat so much etc

So we are both pretty tired, and a little strung out, but he is still there with a beautiful smile, or a nice comment to lift my heart up when I am feeling exhausted. This afternoon when it was still light we went for a walk, and he pointed up into the cloudy sky and said look look the moon, and sure enough though the clouds and mist was a barely visible moon peeking out. So despite his discomfort he is all there.

Have to sleep, because I know for sure I will be awoken soon to adjust his blankets, at his request , or change a full nappy after a difficult delivery, that I will have to sit with him to give him moral support, but not touch or talk, as he stands in his bed pushing and pushing to get it out of his sore bum. Then we will have to go through tthe discomfort of a nappy change in the cold nite, all the wiping and cleaning of the generally big mess, will make his eyes water, and his legs will get sore from being lifted to get to his bum, and his new heavy body pulling down on his ankles must hurt.

A few days of strength and perspective

Hi all,
Hope you and your families are well. First let me thank you for all the amazing support everyone has shared. It is amazing to think that the Internet and email could feel so warm and comforting at this time. Through all this drama I have never felt alone and I thank you for that. I try like crazy to make sure Patrick feels all the support as well. Frankly, he has a much tougher job than me at the moment.

Let me start by saying. Rafiki’s prognosis is good. I have seen statistics anywhere from 80-95%. We feel confident he is in this percentage; full recovery is the only option, we would like you to all believe in that as well.

I am not sure where I have left it with you but I guess I will start with probably the hardest day of my life. April 1st. The day I left the hospital to catch a plane back to the States.

The boys were still in the hospital in Southampton and there was discussion that they would probably get out that day or the next. I felt relatively safe leaving them in the hospital knowing they were in safe hands and the nurses would not only look after Rafiki but Patrick as well.

I had to get a train early in the morning to get to the airport- 2 hours away. One of the chemo drugs that Rafiki is on is a steroid. It is very effective on the Leukemia but incredibly hard on the poor little monkey. He has Roid rage, and eats non-stop. He has become obsessive and of course very sensitive and frustrated. He has never been a cuddler but when I went to say good-bye he wouldn’t let me and pushed me away. Of course I couldn’t take it personally but it hurt.

We were told that Rafiki wouldn’t be able to travel for at least 2/3 months when there would be a small break in the intensive part of chemo.

The boys ended getting out of isolation that day and were moved to the ward where there were at least 3 other people. A much more challenging environment. Rafiki wouldn’t let Patrick get more than a few feet away. Patrick spent the next 2 days catching catnaps in an uncomfortable chair near Rafiki’s bed.

They were finally released from Southampton General hospital, which is the regional Oncology center April 3rd. They were transferred to a smaller, newer hospital in Dorchester. This hospital has a children’s ward but is not an oncology specialist hospital. This hospital is half way to Southampton where Rafiki will receive occasionally treatment for big things and halfway to Patrick’s brother’s.

The boys were transferred by hospital transport to the new hospital with out paying a dime. Once they arrived they were greeted by a whole new staff of nurses and drs. They had their own room as Rafiki needs to be in isolation or at least away from any other infections.

The new nurses brought him a box of toys just for him. They will put his toys away when he is at home and bring them out when he needs to visit the hospital. This will help to reduce the risk of infection. He has male doctors at this hospital and seems to be more comfortable with them. He isn’t down with all the kisses and baby talk.


They spent another week there including Raifki’s 2nd birthday on April 8th. Unfortunately, Raifki was scheduled for one of his big chemo injections and had to stay in the hospital for observations. The nurses did bring him a toy and book but I am sure he had no idea of the significance. I thank you again for all the presents that were sent. I think Patrick and Rafiki are savoring opening them. Patrick didn’t want too much at the hospital and planned to celebrate Rafiki’s birthday another day. Another hard day for me as Patrick and Rafiki were supposed to be home from their 2-month stay in Zimbabwe April 6th and we were all to be together for his birthday.

The boys finally made it to “The Lindsells UK” on April 10th, -Patrick’s brother’s home. Edward, wife Liz and there 3 children Emma, 15, Kate, 9, and EJ, 7 (I think) they live in a little village called Stallbridge. Stallbridge is outside London about 2 hours.

Of course it is a mixed blessing to be out of the hospital where the boys have their own space and the safety of consistent medical assistance. Being at the Lindsells o has its challenges as it would anywhere we one must live in another family’s space. We are blessed to have this opportunity and our thankful to have relatives there for us. The kids are a great source of entertainment and diversion for the little monkey.

I am sure the change of environment was welcome. Rafiki even walked a bit with assistance. He hadn’t walked in over a month. He is in quite a bit of pain. Drs. have said that his pain is something like growing pains but I imagine it is much more intense than that.

Raifki not walking climbing and generally carrying as a normal 2-year old is very hard for us to see. Especially if you imagine his life a few short weeks before when he was living the life with great freedom in Zimbabwe. taking walks, riding on tractors and playing with dogs, birds, bugs, cows, and having a whole playground of friends who were fascinated by this little white boy.


You can imagine Raifki’s confusion from going to a peaceful, natural environment to be thrown into a dry hot hospital room in England, looking out the windows into raining gray skies. And of course the scariest part having people poke and prode you every hour, getting surgeries and generally feeling like hell. I am sure it would break anyone’s heart to watch your child petrified of what is happening to him or her.

So the current situation with Rafiki is he is stable and in the intensive part of an in
Chemo. April 18th is a huge day for us. Rafiki will go in for a Lumbar Puncture. This is a minor surgery but he will be put under.

Definition of a Lumbar Puncture
The insertion of a hollow needle beneath the arachnoid membrane of the spinal cord in the lumbar region to withdraw cerebrospinal fluid for diagnostic purposes or to administer medication.

For more info:
http://health.usnews.com/usnews/health/cancer/all/all.test.lumbar.htm

This will tell us if the Leukemia is in remission which we fully expect it to be. We will continue to receive treatment for the next 3 years for maintance and to keep that little mother fu—ker, the C word AWAY for good.

Communication between Patrick and myself is challenging to say the least. His cell phone does not work in the house, as it is one of this 1800 century homes with incredibly thick walls, it is challenging for Patrick to find a quick moment to write an email when he needs to try and sleep whenever Rafiki does, and the house phone always seems to be busy for some strange reason. Hard to believe this is a developed country.

So here in Colorado I am back at work, which of course is a challenge especially the first few days when I had trouble keeping it together. I sent off an email to the folks at work who of course where as shocked as you all were. Everyone offered their help in anyway possible but the hugs were the hardest. I tried to avoid them for the most part as that was a sure cause for a break down.

My co-workers, and boss, long time friend Rick Hackett, have been wonderful and managed to sit through a few sessions of my tears. To be honest I couldn’t face up to the responsibilities of finding out about insurance and finding a doctor, when I first arrived. I was so fragile I was afraid I would break down with the mere mention of Leukemia.

So one week later feeling a lot stronger and accepting the fact that our lives will never be the same I am on the path to gathering information to help us make some major decisions.

On Thursday, April 17, I will be going down to The Children’s Hospital in Denver to meet with Dr. Brian Greffe. He was recommended by our pediatrian and is also on an international Drs list for oncology that our doctor in England gave us.
http://www.uchsc.edu/peds/faculty/bios/greffebio.htm

So far he has been wonderful, calling me on my cell himself, leaving his direct line and spending time with me on the phone. I have already faxed the information I have from the English drs which he has reviewed and feels Rafiki’s leukemia straight forward and a transition should be smooth.

He will give me a tour of the hospital, which I have been told is fantastic. We definitely want Rafiki to be in a kid friendly environment while going through his treatment. He will also introduce me to the Social workers at the hospital who will hopefully be able to go over my insurance with me and help me to figure out what the financial implications of this adventure will be. Obviously this will be a huge factor in our future decisions. As many of your know we are blessed that both Rafiki and Patrick are English citizens and we have not had to pay a penny for our treatment thus far. England has a social health care system.

I will be returning to England May 9th. I had plans to go there to shoot a friends wedding there on May 18th. The ticket was already booked and I had added a few days before the wedding to see friends and sort out a few things with our flat in London. I will now go directly to my boys, shoot the wedding and stay to be with my family and start discussing our options. The hard part is this is not a decision about the next 6 months but probably the next 5 years.

I have 12 weeks of UNPAID family leave which I have already dipped into. Work seems to be ok with the fact that if I need more they will be willing to give it to me as long as I stay in touch. I will stay at least a month in England.

There will be a small gap when Rafiki will be able e to fly home. If that is our decision to come back to the States. We will all fly home together sometime in mid-June and I imagine begin immediate treatment at Children’s.

Not much to deal with right? ;) To be honest I didn’t realize what I was dealing with till a friend laid it out for me. I am not strong just surving, as you all would do. Again, I so appreciate all the support. I may be calling on you for additional support in some form or another. Just staying in touch and following our story means a lot.

I need the clarity of friends and family to help me put things in perspective.

Thank you for being a part of this journey.
Feel free to pass this on to additional friends and family I am have forgotten. I hope to write an introduction email to the situation, as many still do not know what has happened.

Lots and lots of love
Jill