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