Emma's Journey to Recovery

1 Year Later

2011-09-20T20:47:00.003+12:00

Hey Everyone!
So sorry for the really late update.
A year ago I was still in a coma in Mexico, and now things have never looked better. I continue to gain strength every day and am able to do more and more things. I am still pain free and have not had any relapses since February. The relapses I had in the beginning of the year did not last very long and got better by themselves so I didn't have to receive any boosters.
I am really enjoying being able to play piano and guitar, but am going to wait a bit longer until I tackle my bass as it's harder on my hands.
I have continued to write songs and now have a collection of 9 songs that I would love to one day make an album with.
Life for me has changed dramatically and everything is so very new and exciting. I could not have dreamed for a better outcome and I feel so incredibly blessed. I am able to do so much more than I could previously and am able to look at planning for my future. I have applied to enrol at Waikato University next year where I am hoping to study Music and English. I am planning to start with one paper in semester A and see how it goes, taking things very slowly as I am still in the rehabilitation stage.
The changes in my life and the way that I feel are absolutely outstanding. I never realised that things could feel so great. Thank you so much to all my doctors, nurses, family and friends and all the people that have supported me on my journey. Thanks to you, I now have a life to look forward to, a life worth living. I am eternally grateful for all your help. Thank you so very, very much.
Lots and lots of love,
Emma xx

Merry Christmas!

2010-12-22T22:32:00.001+13:00

Hey everyone!!
I just wanted to thank everyone so, so much for all your support during my journey to recovery. Knowing that there are people that care so much really helps! So thank you all. I also wanted to give a huge thank you to everyone that has helped by donating, making my treatment possible. It means so much!!
Well, I thought it’s been awhile since a blog entry and I should let you all know how I’m doing. I feel AMAZING!!! Better than I have in years! I still have to take things really slow and continue to recover, but I am feeling really, really great. I have been able to play piano and guitar again :p which I am really enjoying. I’ve even started to compose a song :D I have also been able to venture out and make it to a few christmas barbeques which has been exciting, as it was something I wouldn’t have been able to do previously. I know it’s still early days and I have to take things slow, but so far the trip has been a complete success. I am so very grateful to the fantastic team of doctors in Monterrey for giving me my life back. I hadn’t been able to remember, or imagine a life without pain, and they have made it possible for me.
I also thought I should let people know, I have a new kitten :p Her name is Jazz and she is ADORABLE. Though a little naughty – she loves to climb our Christmas tree. Jazz and Fred (the turtle) are still sorting each other out, hehe.
Well thank you all again! I hope you all have a really great Christmas and also if you’re ever in the area, I’d love for you to come and visit!
Lots and lots and lots of love,
Emma xox

Home!

2010-11-14T13:47:00.000+13:00

We are home at last and it felt so good to touch down on NZ soil! We flew from Monterrey to Houston, on to LA then Auckland and arrived home a few days ago. Emma travelled really well all things considered, as it was a very long way to go. We were all so excited to see Aleishia and Luke who had done so well at home under trying circumstances. Air New Zealand staff were absolutely fantastic to us and very helpful and considerate of Emma's condition (which was a welcome change after going through so many US security checks).

Emma is really pleased to be home and is continuing to improve each day. She will have medical check-ups this week and over the coming months, including an ENT Surgeon for the trac tube removal this week. She tires very easily but is sleeping amazingly well – we are not use to seeing her sleep 8 hours at night so a welcome relief! Emma still has some recovery from all her complications, so she is needing to go quite slow at things but each day she becomes more like the Emma that we know and love.

As part of the research study, we were advised to refrain from asking Emma how her RSD pain is during or after the treatment, but to allow her to tell us how she feels in her own time, if she wants too – and this has been very difficult!! We are hoping that Emma’s friends will also be able to refrain from asking her too. However, soon Emma will be able to update you all on her experience and progress from her point of view.

All of the prayers for Emma and the great support that we received from so many people have helped us all so much through this difficult time. We thank you all. Our prayers have been answered and it is so good to have the whole family back together again.

Discharged from Hospital!

2010-11-09T15:03:00.001+13:00

Emma has continued to do really well and has been discharged from the hospital and is now recovering at our hotel. We have had Doctors' visits here at the hotel, but more for friendly visits rather than necessity which is great. They (and us) are amazed how quickly Emma is recovering from all her complications; she is chatting heaps, laughing & smiling, walking well, sleeping at least 8 hrs at night and generally feeling really well, although she tires easily. We have had small daily expeditions to Emma's favourite store - which of course is the pet store (the mall is across the road from our hotel) where there are lots of baby Fred's.

So GREAT NEWS - we are planning our travel back to NZ which is so exciting, and fantastic to see Emma well on her road to recovery. We are hugely grateful to Dr. Cantu, he is truly a wonderful Doctor with great expertise in treating RSD patients. Also, we are very thankful for the great team of Dr's here who worked so hard for Emma - and she kept them on their toes for many weeks!!
We are also very thankful for the wonderful friends we have met here, especially Sarah (Mum to Jessica who is also an RSD sufferer), who has given us so much help & support to keep us going through these past difficult weeks.

FANTASTIC NEWS!

2010-10-28T14:03:00.002+13:00

Well it has been quite a while since the last update and that is because Emma has needed us to be on hand 24 by 7 but each day she has improved greatly.

She was discharged from the ICU and has been back on the 8th floor for a couple of days!!!! YAY HUGE EXCITEMENT!!!! She has continued to improve daily and is well on her path to recovery since waking a week ago. Her infections are under control, she is still on antibiotics but hasn't had a fever for a few days, and the markers in her blood, e.g; white blood cell count, are much better and near normal. Em's lungs have improved greatly, she is off the ventilator and after a couple of days on a T-tube that gives oxygen & humidity, she is now fully breathing on her own. She is being slowly weaned from the final sedation medication she has had for the last 5 weeks, so this has been happening slowly and will continue for a few more days. Emma has developed a high tolerance for the sedation medication and in the past week has been on a level of sedation that would send the "average" person into coma, but Emma is very much awake and alert with the current level. This was anticipated and is the usual case in RSD patients as they need a much higher level of sedation to send them to sleep and keep them asleep - all to do with how these patients develop an amazing inner strength to cope with their unrelenting & severe level of pain! So even though Emma is being weaned very slowly from the drugs, she is still having drug withdrawal episodes but as the days go bye she is handling these much better.

Emma has continued to have neurological tests; yesterday she had her 2nd MRI, her 4th EEG is scheduled for this weekend, and she has had an optical nerve test. Every EEG gets better than the last one and they are now showing no seizure activity and the optical nerve test showed normal vision. Emma's 2nd MRI (15 days after first MRI) surprised the Doctors (and us) as they were expecting very similar images to the first, either the same, slightly better or slightly worse, but the images are now FANTASTIC!!! They show that 95% of Emma's brain lesions from 15 days ago are gone - all healed! For a minority of patients, they may take many months, years or never make a full or good recovery, so thankfully Emma is one of the lucky ones and the disease was diagnosed very quickly and she responded well to the intensive steroid treatment. She is communicating and moving normally, has a good memory and there is no sign of any impairment. She has been spending a lot of time listening to music and today enjoyed watching a cartoon video. Tomorrow she may spend some time sitting in a lazy boy chair, but weight-bearing is still some days away.

After such a lengthy ordeal, we are so relieved and grateful to the many wonderful Doctors here that have enabled us to have our old Emma back with us again!

Update

2010-10-21T13:45:00.004+13:00

The 5 day steroid treatment for ADEM went without a hitch. (1 gram of methylprednisolone per day) Emma was well sedated, had no fever, and hardly moved a muscle for the 5 days. The surgeon is very pleased with her progress and her stomach and small intestine function improved so that by yesterday she was being feed entirely via nasal tube to the stomach. Yesterday they began reducing the sedatives and soon she began to wake. Like the last times she had plenty of energy and it was difficult to keep her calm and still in bed and to not have her trying to pull tubes and equipment. The waking was slightly different because of the tracheostomy tube which allowed some sedatives to still be used - the neurologist wanted the waking to be very slow. The latest EEG's show no sign of seizure activity and Emma has become more and more awake over the last 2 days. Unfortunately the steroids strongly suppress the immune system and last night she had fever again. There are a few possible infection sources and broad spectrum antibiotics have been started while they wait for the lab to identify specific cultures. So far the signs regarding the ADEM are very positive, she can follow commands, move all limbs and see well and she has improved each day as the sedatives have been reduced. She has no trouble remembering her situation, her friends and family and even some events from the last waking. The trac tube means she can not talk so communication is reduced to facial expressions and hand squeezing. One of the possible infections is in her bronchial tubes so breathing is still difficult but she is controlling the ventilator herself and producing about 60% of the energy for each breath.

Thank you all so much for your great support.

More Complications

2010-10-13T15:42:00.002+13:00

Unfortunately Emma has suffered another huge set-back. Throughout the entire coma she has had several events in which she reacted differently or presented different symptoms than the usual (textbook) responses. She had been doing great, she was extubated and moved to a recovery room and had been awake for 4 days (and literally awake as she only slept for around 6 hours in patches of 10-20 mins). She was drinking and eating OK after this initially being very difficult. She was anxious and restless most of the time, so we needed to reassure her that everything was fine. However, unfortunately Emma had 2 seizures in her recovery room so she was moved back to ICU for closer observation. When she had more seizures in ICU only 10 hours later (whilst being on anti-seizure meds) they only had one option and that was to re-intubate and sedate her again to keep the seizures under control. Following the seizures she had a very high fever for almost 15 hours. The fever could be caused by seizures or by an infection. Investigations have been extensive including an MRI scan which clearly showed lesions in the white matter of her brain from an inflammatory process. The diagnosis is Acute Demyelinating Encephalomyelitis (ADEM). This is an extremely rare process (so rare that the Neurologist has only seen it a couple of times in this extensive career) which can happen 3-4 weeks following sepsis (which Emma had on Day 2 of the coma). The treatment for ADEM is a 5 day course of massive doses of steroids which they started this morning. In Emma's case, ADEM is an inflammation which has caused damage to the signal pathways in her brain. The negative side of using steroids is that it suppresses the immune system making it harder to fight infections so last night Emma underwent a 4 hour laproscopic abdominal surgery to make sure that there was no residual infection from the previous surgery. They removed some fluid that was not obviously infected but may still have been a source of infection, it is being cultured now, and early indications are that it is negative . Fortunately the ADEM process in the brain was found very soon after it began (within 3-4 days) and so the Doctors have given Emma a high chance of success. Emma now has had a tracheotomy and will remain sedated for a period of 7 - 10 days after which she will have another MRI and be woken when the Doctor's feel it's appropriate.

As you can imagine we are very upset by this turn of events but continue to hope and pray that Emma will again show her resiliency and come out on top!

Emma wakes (again)

2010-10-08T02:56:00.001+13:00

Best news in many days!
We are so relieved that almost 48 hours ago Emma was woken and extubated. Since then everything is going as expected for the end of a ketamine coma. She has a lot of difficulty breathing due to the pneumonia and the soreness in the throat but the breathing is improving. She is experiencing quite a few ketamine hallucinations, is very active and has not slept a wink since waking. She is beginning to eat and drink a little and most of the medications have been removed.

Day 19

2010-10-05T10:19:00.001+13:00

Emma is still sedated and is very stable but still has persistent fever (though manageable). She is healing well from the surgery and the feeding direct to the blood stream has been removed because she is now getting all that she needs via the stomach. The Dr's have been trying to find the infection source and so Emma had a 3rd CAT scan a few days ago which gave them much more detail and showed the abdomen was looking good. The scan and X-rays have also been showing a fluid build-up and pneumonia on her lungs. Last night the fluid was drained and today she is breathing a lot easier. She is now following a protocol to try and wean her from the ventilator. If she is strong enough by tomorrow then they will extubate again but if she is not then the time has come for a tracheostomy (as the breathing tube has been in for long enough). Her central catheter is being changed today as well. This is the second change of central catheter as these are also potential infection sources.

We are heartened by the improvements we have seen today and pray that those improvements continue.

another bump in the road

2010-10-01T08:35:00.000+13:00

Poor Emma spent a very difficult 15 hours awake and off the ventilator yesterday but fluid on her lungs meant that she progressively was not able to get enough air. Unfortunately it was necessary to sedate her and put her back onto ventilation. Since being back on the ventilator her lung X-ray is much clearer already. Medication and a Bronchoscopy (camera & suction) today will be used to clear her lungs even more. When they extubate her again she will not have had ketamine for some time and so they will be able to perform much more thorough tests to make sure she will be able to breathe OK on her own. Emma was very strong yesterday while awake and we know she will continue to fight hard to come through this ordeal.

Emma wakes!

2010-09-30T17:42:00.002+13:00

Fantastic news today - Emma is awake and has been breathing on her own for the
afternoon. The surgeon and doctors are very happy with the results.
Emma is having hallucinations from the ketamine as expected and this will continue for at least the next day but she is doing really well and is remaining quite calm.

Today's update

2010-09-28T15:02:00.000+13:00

It is now 48 hours since surgery and Emma is continuing to do well. The
surgeon was very pleased with her progress and her condition is
improving. She is peaceful and still sedated. We are very encouraged
by the results of the last 2 days and hope beyond hope that she
continues to improve. Thank you to everyone for your messages of
support and prayers.

Surgery

2010-09-27T11:23:00.000+13:00

The serious complication and infection Emma suffered early into the coma has meant that she required surgery last night to her abdomen. She is recovering well and the outlook is very good, although we know the next couple of days could be difficult. She has responded well to the surgery and she is still sedated and on ventilation. We are just taking one step at a time, with lots of prayers & faith.

Day 9

2010-09-25T07:46:00.002+12:00

The Doctors’report this morning was quite good, Emma is still improving, her blood work is getting better by the day and her abdominal & lung x-rays are OK too. Yesterday she had her antibiotics changed and this seems to be bringing down her fever. She is still sedated. There is a delay in waking her up for another day or two to make sure the infection remains under control.

We can feel all of your positive energy coming our way and we're sure Emma can too!

more sleep required

2010-09-23T06:14:00.000+12:00

Overnight Emma did very well, blood tests and X-rays were all good and continue to improve. Her digestion is getting better each day. They want to kept her sedated for another day or two as they don't want her to wake today in case she might be too uncomfortable. She is mostly still fed through the blood, but yesterday they introduced a small amount through a line into her stomach and she has tolerated it well, in fact they think this is why her abdomen sounds much better today. They are taking the feeding to her stomach conservatively, while still giving her the best nutrition.

We will keep you posted!

Day 6

2010-09-22T07:26:00.001+12:00

Today Emma has been taken off all sedation, including ketamine to allow her to begin to come out of the coma. Her lung function and x-ray continue to look really good. One of drugs they have used to sedate her is long lasting so sometime over the next day or 2 she is expected to begin to wake up. They don't want her to wake yet as they'd like a day without ketamine first as she will be much calmer then. Her lab results are getting better each day and her bowel continues to move – albeit slowly. The way her breathing machine works has been altered to allow her to initiate each breath which she is doing well - the machine did it all for her when she was sedated. The Doctors are pleased with her progress and each day she is improving. Everything is on-track, and the Doctors are feeling positive about good pain results, although that won't be known for quite a while yet – so we just wait some more...

Day 5

2010-09-21T08:38:00.001+12:00

This is now Day 5 of Emma’s coma (Day 4 of ketamine), and she continues to improve following the infection from 2 days ago. All of the blood results, x-rays and scans are continuing to improve so Dr Cantu is continuing the ketamine and it has now been raised to 6mg/kg/hour (as per the protocol). Her bowel is continuing to move and do what it is supposed to do, although slowly, but it is OK and they know it will just take time. At this stage, it is estimated that Emma will remain on ketamine for 2 more days and then they will decrease the ketamine to slowly let her wake over the following days.
So she is doing great and she continues to be looking restful and her blood pressure, heart rate etc are good.
Today we met Jessica and her Mum Sarah from New York. Jessica has recently had the ketamine coma and she is in one of the hospital recovery rooms and doing really well. It was great to meet with a family that has had a loved one go through the ketamine coma and we know that Emma will love to meet them in the coming week.

Ketamine starts again

2010-09-20T07:48:00.001+12:00

We are 4 hours into day 4 of the coma which has started on a very good note. The infection that Emma has been battling with for the last day has responded very well to the antibiotics and other medications. Emma has been paid very close attention by the ICU staff over the last day as they adjusted medications to ensure she was on the right track. The entire team of doctors (3x RSD/ketamine, 1x ICU, 1x gastro, 1x surgeon) were back in her room just 1 hour ago and the mood was very positive. Her liver function has improved to the point where they are happy that reintroducing ketamine will have no negative affect on the infection and that its analgesic properties will be beneficial. Regular blood testing & x-rays are continuing to monitor Emma’s progress and Emma’s temperature is now in the normal range.

Update from the ICU

2010-09-18T14:00:00.000+12:00

Emma has been in the coma for 52 hours so far and unfortunately it has not been going as smoothly as we’d like. The first 24 hours went very well. It is quite usual for the ketamine coma to be a light coma at first and so she would grow restless every hour or so and would be given a slight boost of extra ketamine to deepen the sleep. The second day was when a few problems arose. The problem in Emma’s case was that instead of the bowel clearing in the first couple of days as expected it has remained blocked and distended her abdomen. This has caused a slight infection and lowered effectiveness of liver and kidneys. Because of this Emma has been put on antibiotics and taken off ketamine but is still in a coma using other medication. The aim is to clear the infection and wait for the bowels to clear before reintroducing ketamine. This situation has only happened to one other ketamine coma patient and so there has been a team of doctors in the ICU examining Emma so we feel that she is being very well cared for. X-rays and blood samples are frequent to monitor her status. The problem with the bowel has meant that Emma has been fasting for the last 24 hours and they have just now begun feeding her direct into the blood stream. Her temperature is not too high at present (37.4degC) and the antibiotics should soon do their work.
Emma is calm and peaceful and the doctors have told us her condition is stable and so we wait for the blood results to improve before expecting any change.

Thanks to all of the people involved with the concert for Emma last night in Hamilton. We hope that it went well. We see that there was quite a storm in NZ last night so we hope that everyone still got out and had some fun!

Sleeping Beauty

2010-09-16T11:56:00.000+12:00

We had a very calm start to the day and arrived at the Hospital without a problem. Emma was relaxed and in very good spirits. She was thirsty as she was not to have anything after midnight. The admission was easy and then Emma was shown to a room in the ICU and the doctors and nurses started preparing her for the coma. Emma gave Dr Cantu a collection of NZ music on MP3 that she had been making over the last few days. Very soon we said our good-bye's and they put her to sleep. To Emma the time in the coma will seem like 5 minutes. Nikki and I waited outside the room while all of the lines were put in and she was intubated (tubes for breathing and feeding). The ICU staff were all very calm and welcoming - the hospital is very quiet today because of the national bicentennial holiday. They are moving Emma to a bigger room and we will be able to go back in and see her after they are finished getting everything set and have done a few tests (X-rays etc.) Dr Cantu has told us that everything went perfectly which is great news!

24 hours to go

2010-09-16T03:08:00.002+12:00

After our long wait we are now only 24 hours away from Emma’s "big sleep". The coma will start soon after Emma’s admission, around 9am Thursday 16th (that’s 2am Friday 17th NZ time).

Thank you very much to everyone for all of your support and kind wishes – Emma has been very excited to hear from you all (and we have too)!

The coma is usually started on a Sunday because the hospital is at its quietest but Dr Cantu has to be out of town until tonight so the coma will start tomorrow morning. This coincides with Mexican Independence Day so it will also be a quiet day at the hospital. Independence Day is a bicentennial this year so a really huge event. There are lots of “Viva la Mexico” decorations and items for sale.

The weather in Monterrey has been 30+ degrees every day since we arrived. Some days have had a breeze to clear the smog and the mountains are very beautiful rising 2 miles above the city.

The view from the 12th floor of the hotel

Visit to San Jose Hospital, Monterrey

2010-09-12T09:05:00.004+12:00

We met with the Hospital’s International patient co-ordinator and she speaks English very well, so it made our visit easy. We took a peek at the ICU and a recovery room similar to the one Emma will be in when she is discharged from the ICU. The ICU is just like any one we have seen, with lots of people hooked up to heaps of machines. The recovery room is really nice and quite spacious and has its own bathroom and sofa so when Emma is up to moving around, she will appreciate her own bathroom and space.
Emma is scheduled to be admitted this coming Thursday morning 9am and all the paperwork is complete and ready for her arrival.
We had another visit from Dr Cantu at our hotel, he is very easy to understand and open about things. We discussed in more detail the procedure and what we should expect throughout the treatment. We know that Emma will have catheters in her arm veins for the ICU team to test her blood daily to ensure her kidneys & liver are working properly and she is has the right amount of oxygen in her blood. Other tests the team perform daily are x-rays to ensure Emma’s lungs are healthy. There are other tests also to observe changes in her RSD symptoms like temperature on different parts of her body (as she currently has quite a mixture of temperatures throughout), inflammation and colour of skin. Emma will of course have other tubes like the two through her mouth for breathing and feeding. The drugs used to anesthetise Emma will be through the IV line and will be slowly increased during the five days and this is to ensure she remains under general anaesthesia. After the 5 days, the quantity of ketamine is decreased slowly until Emma wakes up. They have found that it is much better for the patient to slowly come out of the ketamine coma, so it is likely that it may take Emma a couple of days and these days could be some of the toughest for us.
Dr Cantu has stressed to us, that it is important that Emma takes things very slowly after the treatment and that her rehabilitation needs to be slow and continuous; small steps each day.
Emma has been resting up heaps and eating really well. We are pleased with our hotel here and it has a free shuttle to the hospital which we will use lots in the following weeks. Our hotel is located across the road from a supermarket which has been really handy to get good food. Our hotel also has its own walkway across the highway (accessed only by hotel door key) to a good mall which has been fun to take a look around.

Tampa - Downtown Riverwalk

San Jose Hospital, Monterrey - from Cerro del Obispado (Bishop Hill)

Hola Amigos

2010-09-07T07:37:00.002+12:00

Well we've arrived in Monterrey! We arrived yesterday afternoon and stayed one night at the holiday inn. It's been quite amusing at times trying to talk to people that know little or no english, but we're having fun and I've decided we're all going to try to learn a new sentence each day.
Sentence for today is:
Por favor nos trae la cuenta
It means please bring the bill, dad tried it out on the waitress for our brunch this morning and she seemed to understand him fine!
We are now at the hotel that we are going to be staying at, it's near the hospital and there will be a free shuttle that can take us to the hospital, which is great!
We met with Dr. Cantu last night, he made a visit to our hotel. It was really good talking to him. He told us there is going to be five senior doctors that will be over-seeing my medical care and at least one will be there at all times. He also said that all the doctors live within 10 minutes of the hospital and that we can contact him 24 hours a day, 7 days a week, which is good!
We are going to go to the hospital tomorrow to check it out.
Nothing much is happening, I haven't seen any lizards here... I'll have to find out if they're here as well.
It seems a lot cooler here, although it is the same sort of temperatures, it doesn't have as high humidity so it's much more comfortable.
Much Love,
Emma

Adios!

High School Fundraising Concert

2010-09-04T13:33:00.001+12:00

A big thank you to Scott, Tony and many other helpers from Hamilton Boys' High School Leo Club and the Hamilton C.B.D Lions Club for volunteering to put on this great fundraising concert for Emma!

Here are the details:

The Hamilton Boys' High Leo Club in conjunction with the C.B.D Lions Club are holding a charity concert for High School Students from the Waikato Region.
This whole event is dedicated to fund-raising for Emma and is being organised by Hamilton Boys' High student volunteers.

Date: Saturday September 18
Time: 7:30 to 11pm
Venue: The Meteor, Hamilton
More info is available on the concert facebook page

Confirmed Artists:

The Good Fun
Tied on Teeth
DinosaurGoesRawr

*Tickets are $10 and a School ID will be required* ( unless another agreement has been arranged)

Heading to Monterrey

2010-09-04T13:30:00.000+12:00

In the past week it was a relief to be able to book more than one night in advance but we have still had quite a few hiccups with arrangements for the hospital in Monterrey. Dr Kirkpatrick has been very helpful and he and Dr Cantu have worked for us to sort out the problems. We are all set to fly out to Monterrey tomorrow morning (Sunday) via Houston. We will meet with Dr Cantu on the 9th and the coma should now start on the 15th. So still a long time to wait but we will meet with hospital staff on Monday so it will all seem a lot more real by then.

We rented a car this week and that made things a lot easier - we could drive to the shops, supermarket etc. Emma continues to struggle with the travel and spends most of her time in the hotel room trying to get comfortable. We have managed a couple of sight-seeing activities - two nights in St Petersburg on the other side of Tampa Bay - highlight was the St Pete's Pier and the lowlight was the grotty hotel. On Thursday we spent the afternoon at the Tampa zoo. Emma was extremely excited by all of the animals but the turtles, manatee's and giraffes were the highlights. Hurricane Earl looked huge next to Florida on the weather-map for most of the week but was never forecast to hit Florida. The storm made Florida much drier than usual and we continued to get hot sunny days. The lower humidity made our afternoon at the zoo much more comfortable but it was still over 34 degrees C. There were three other major storms forming in the Atlantic behind Earl and one which was likely to head in to the gulf of Mexico but these are all weakening now and don't look like they will disrupt our travel plans tomorrow.

We are thinking of our Cantabrian friends and relatives as they deal with the major earthquake there last night. The damage looks significant but it's great that the casualties are so minimal.

Coma Date Set

2010-08-29T10:32:00.001+12:00

We've been expecting final confirmation each day for some time now and today it finally came. All boxes are ticked for Emma to begin the coma in Monterrey but unfortunately it can not start until September 12th. We must be in Monterrey on (or before) September 9th. Though it is disappointing that it can not happen sooner we are relieved to now be able to plan the next 2 weeks without having to book hotels on a daily basis. Waiting without knowing was agonising!

We are not sure yet how we will fill the next 2 weeks but we will probably work remotely for some of the time. Emma is not up to sight-seeing so we will have plenty of time on our hands.
We have spent the last few days alternating between a few different hotels near Tampa airport - using Expedia's daily specials to decide which we stay at. The hotels have a free local shuttle so going to get food has been relatively easy. On a few occassions Emma has felt well enough to come with us to buy food at the local mall. As we need to travel light to be mobile with the wheelchair I tell Emma that the only things she can buy she must eat!

Still waiting in Tampa

2010-08-24T06:52:00.003+12:00

We are still waiting here in Tampa, although expect to fly to Mexico either tomorrow or the day after. Emma's participation in the research programme has now been approved by all of the team here in the USA, Dr Cantu (San Jose Hospital, Monterrey) and his University's International Research Board. There is one more remaining box to be ticked and it is gaining approval from the Ethics Committee at the San Jose Hospital, which we think is more of a formality.

Dr Cantu is currently working on getting a team together for Emma's 24hr care and it is likely she will be admitted this coming Sunday to the Intensive Care Unit at the San Jose Hospital.

We have had a couple of quiet days here, mostly in the hotel room as it is wet outside but still remains very warm with increasing humidity around 85%.

Bye for now.

Videos from the Acoustic, Jazz & Blues Concert

2010-08-20T12:45:00.002+12:00

Hi,
I've just put the videos of Emma's songs from the Acoustic, Jazz & Blues concert onto Youtube. Video quality is not so good but we hope you get the idea!

Here are the links.
In Flames
Breathe

TURTLES!!!!! :P

2010-08-20T12:27:00.004+12:00

We went to the Florida Aquarium today, BEST DAY EVER!!!!
Saw lots of turtles!!!!!! I really wanted to steal them all... but didn't think they'd appreciate that too much. Also saw a few cute little tortoises! One of them was walking round his enclosure and kept walking into a bird. The bird didn't really appreciate this and it pecked him on the head... and then he did it again, so two pecks on the head for him. Poor tortoise
:(
We haven't heard word yet from mexico so just waiting for the all clear.
Love to you all x

Dad's Video on Tampa Lizards

2010-08-19T13:47:00.002+12:00

Well, here it is! Dad's video on a Tampa Lizard.
Here you see a Brown Anole Male lizard showing his dewlep (red/orange thing)
Apparently they do this to show their "macho-ness". Either when there's a female around or as a warning to threats. The bobbing is also a sign that you're getting 2 close!! Dad "composed" the music.. haha.
Hope you enjoy :P

See Tampa Lizards on Youtube

Lizard Spotting

2010-08-19T03:19:00.004+12:00

Today Mum, Dad and I went out lizard spotting to try and get good pictures of lizards. We found some lizards posing on the lamp posts in the car park right outside the hotel! The lizards were sunbathing so we were able to take quite a few pictures of them. They do this cool thing with their necks and this yellow/red thing comes out and back in, we think it may be a warning to us that we're getting 2 close as they only appeared to do it when we were getting really close to them.. not sure though. I'll attach some photos of them doing this! We were outside for about half an hour at 10am before it got way 2 hot to stay outside. Dad videoed a lizard doing this cute little dance, head wiggle thing. Hopefully we'll be able to get it on youtube!
Lots of love,
Emma x

Tampa (Day 6)

2010-08-18T10:54:00.002+12:00

To date, everything has gone really well for us. Emma's evaluation and testing was quite hard on her but that part is now done. From a research point of view, it was really important to have a base-line to accurately measure improvements. We have now completed everything required of us and Dr Kirkpatrick has recommended Emma for the ketamine coma study. Not everyone that asks to participate in the study is accepted, however luckily for Emma, other than her RSD she is really healthy and has youth on her side. We are waiting now for Dr Cantu in Monterrey to review the tests and also to approve Emma's participation. We are hoping to hear something in the next few days, so we will keep you posted!

After the coma, Emma will need to do regular hydrotherapy exercises, so she tried the hotel pool today to see if she could tolerate the temperature, and although the water is hard for her (she is super sensitive to all touch), she managed to stay in for a couple of minutes. The temperature of the pool is very warm, so it may work out well for her excises post-coma.

Lizards

2010-08-18T10:24:00.003+12:00

Yesterday (16th) and Today (17th) we went to Dr. Kirkpatrick's. I had more pain threshold tests :( so that my results can be determined more accurately. Dr Kirkpatrick also videoed me asking me questions and getting me to do exercises. This video should be up on his website in the next few days for everyone to see. After the coma at 1 month, 6 months, 12 months and 24 months he will video me again doing the same exercises to note any improvements.
I also had a cognitive test with Dr Hoffman; this test is part of the research study to prove that ketamine doesn't affect the brain. Patients so far have either stayed the same or improved in their cognitive ability. They have improved because they are no longer in such a high level of pain and are able to concentrate. The test was repeating numbers and words after him, drawing pictures, repeating stories with the same use of language as him, etc.
Now to the exciting stuff.... LIZARDS!!!! They are really cute. They're about 5cm long and really, really quick. They scuttle over the pavements, much too fast to catch one. However, saw 2 today that were still. But as soon as we moved... they'd gone :( I'm going to try and get a good photo of them, but haven't been able to as of yet.
Also, Mum & Dad let me go 2 the mall 2day!!! YAY!!!!!!!!!
I'm missing everyone in New Zealand lots!
It's still really hot here; 99 degrees Fahrenheit, which is about 37 degrees Celsius. But it's started to rain and I think may have just heard thunder.
Love to you all!
Emma x

First visit with Dr Kirkpatrick

2010-08-13T21:40:00.000+12:00

Today we walked (with Emma in the wheelchair) the 3/4 mile to Dr Kirkpatrick's clinic. First we met another patient (and family) in the waiting room.
She is 19 and had come from Denmark to have the type of Ketamine infusions that Emma had last year in Philadelphia.
We had a good meeting with Dr Kirkpatrick and he evaluated Emma's condition and filled us in with more details on the Mexico Ketamine Coma study. He took some base-line measurements of Emma's pain reaction by pressing a pressure gauge onto her skin and we arranged a cognitive function test with another Doctor for Monday.
On Monday we will also see Dr Kirkpatrick again for more evaluations including going over the pre-medical clearance tests Emma has had in NZ and he will make a video of her current physical functionality. It has been a busy week and we are look forward to a couple of quiet days before our next appointment on Monday. Although the traveling has been hard on Emma, she is doing really well and still has a good
appetite and is sleeping a few hours at night.

We just spoke to Aleishia and Luke on skype video. It was great to talk with them and have a catch-up on the week's activities.

Arrived in Tampa, Florida

2010-08-13T21:37:00.000+12:00

We arrived in Tampa after 6 hours en route from LA. We had a plane swap in Dallas and Emma had a bit of a run in with the TSA (Transport Security). As she went through the wheelchair access way and missed the scanner they decided that she had to have the full body pat down. So despite our protests they began to do this. Emma turned white even before they got to her legs and was clearly very distressed.
As they touched her legs it was clear they couldn't continue, though they insisted that they must. It was not until we suggested that she go back through and walk through the scanner that they were satisfied. So we learnt something there about avoiding the scanner....don't!

It is very warm and humid in Tampa - about 36 degrees and not much cooler at night with humidity of around 75%. The hotel is very comfortable and like most buildings we have been in, a wave of cool air hits you as you walk in from outside.
We can only go out for a few minutes before becoming very tired.
There are not too many other pedestrians, the standard outdoor "attire" here seems to be an oversized SUV with air-conditioner roaring!

Arrived in LA

2010-08-11T14:47:00.002+12:00

Well we arrived in LA without much incident - only one call for a doctor on board and it was not for us thankfully! (The other passenger was fine too). Emma found the flight gruelling but was still able to shuffle to-and-from the wheelchair, shuttles etc. Our hotel is practically in the middle of the LAX runway system but is very quiet - plenty of take-off and landing activity.

Acoustic, Jazz and Blues Concert

2010-08-10T19:43:00.000+12:00

We had a great evening on Saturday with the Hamilton Acoustic, Jazz and Blues societies combining for the concert at Te Rapa race course. Thanks to all of the many people who came and enjoyed the music the total raised on the night was over $3200. Thanks to all of the musicians and helpers who made it possible.

Concert Event

2010-07-23T22:09:00.004+12:00

Thanks to Maxine at the Hamilton Acoustic Music Club we've had an awesome offer of a fund-raising concert event.

These three groups will combine for an evening of entertainment on August 7th at the Te Rapa Racecourse.

The Hamilton Acoustic Music Club

The Hamilton Blues Society

The Hamilton Jazz Society

Tickets are $20 (door sales only) and all funds from ticket sales will go towards Emma's treatment.

A big thank-you to the Te Rapa race course and all of the musicians and helpers for their generous offer.

Media Reports

2010-07-15T19:55:00.000+12:00

Well the fund raising is going extremely well. Thank you so much to everyone for the amazing support for Emma.

It's now less than one month until we start the journey to Florida and Mexico.

Tomorrow night (Friday) at 7pm Emma's story will be on TV3's "Campbell Live".
Soon afterwards it should be available on demand on the TV3 Web-site

The Waikato times ran this article on Emma on June 26 2010

Thanks again everyone, we have been overwhelmed by your support!

What's been happening .............

2010-04-09T20:36:00.000+12:00

It’s been nearly a year since we lasted updated the blog and in the last couple of months new plans have begun to take form.

Unfortunately Emma's condition over the latest year has deteriorated rapidly and the RSD has now spread throughout her body. In particular her pain is strongest in her right ankle and left hand. We are making plans for Emma to travel to the USA to participate in a research programme. This treatment option was recommended to Emma a year ago by Dr Schwartzman and has been delivering some excellent results for other patients.

Emma will need to again have pre-medical clearance tests and if these go OK she will undergo a 5 day induced coma in the intensive care unit in Monterrey, Mexico under the direction of Dr Kirkpatrick at the RSD / CRPS Treatment Center and Research Institute in Tampa Florida.

We will continue to update you on Emma’s journey here on this blog.

We have set up a website to help fundraise for this treatment and to raise awareness of RSD. You can find the site here: http://ihelpedemmaorange.webs.com/

2nd NZ ketamine boosters

2009-05-17T13:51:00.000+12:00

Emma had 2 high dose ketamine infusions in Rotorua (14th & 15th) May 2009 over two days. The infusions did not give Emma any pain relief.

1st NZ Ketamine boosters

2009-05-17T13:25:00.001+12:00

It's been a while since we posted anything so I'm adding some details of treatments since Philadelphia. Dr Stephan Neff in Rotorua worked magic to set up the facilites for Emma to have 2 consecutive days of ketamine at 200mg over 4 hours (the same dose as in Philadelphia). Treatments began just over 2 weeks after the last Philadelphia treatment as advised by Dr Schwartzman. The infusions were performed on April 22nd and 23rd.

Prior to the Rotorua booster infusions, quite a few symptoms that ketamine had helped Emma with has started to return:
- hands: shakes, pain, weakness, sweaty, cold
- skin rashes / itchiness
- more pain
- poor sleeping
- eating difficult especially in the morning.

The pain in her right leg and foot was still always rated at 8 or 9 out of 10.

The booster infusions went well but again had no effect on right leg pain and marginal effects on other symptoms.

Luckily Dr Neff and Dr Schwartman are now communicating on the best course of action. Dr Scwhartzman still states that the best chance for Emma to beat the CRPS is to have the 5 day ketamine coma (which he calls a nap!). We know that the coma treatment in Germany is on hold and that the only other option is in Mexico and that Dr Schwartzman's paitents go to Germany.

HOME!!

2009-04-13T12:54:00.000+12:00

Well came home early yesterday morning and Chana and AB surprised me by meeting me at the airport! Travelled so much better this time around as we were lucky enough to be upgraded to premium economy.
yay - wine on the way back- haha
the pain in my foot and left wrist is the same but my hands and both legs have gotten much better, especially with sores healing with better circulation and playing the piano feels so different - it's great!!!
so, all in all, the trip was a success!
love to you all
xox

Weekend Sight-seeing

2009-04-06T11:58:00.002+12:00

We have just had a really good weekend looking around Philly. Yesterday was quite a cruisy day as Emma was very tired. We did manage to go to Chestnut Hill (beautiful area with amazing history & houses) for afternoon tea and spent a couple of hours driving around rubbernecking! Today we went to Philadelphia Zoo, which was the first American Zoo. The weather was really warm, one of the warmest days since being over on the East - no need for hats, scarves or gloves today!

We are packing up our bags tonight and getting ready to drive the two hours up to New York city tomorrow morning where we will be staying two nights. On Wednesday morning we will fly out of JFK Airport to San Francisco and stay there for two nights before flying home late Friday night. We will be arriving in Auckland early Easter Sunday.

10th treatment day

2009-04-04T13:47:00.000+13:00

The last Philadelphia infusion has come to an end (boosters will start in NZ in a couple of weeks time). We are all pleased to be taking a break from it and looking forward to a sleep-in tomorrow. Not much change in pain response for Emma today. Unfortunately Dr Schwartzman could not be there today so we did not get to see him for a final consultation. Quite an emotional morning as Emma said her good-byes to hospital staff and infusion buddies. Nikki and I also had lengthy discussions with the parents of another patient who has had the full ketamine coma treatment in Germany. We really have learnt a lot more about RSD and what the options are by talking with other patients and carers and feel that we are very lucky to have been able to see Dr S whose waiting list is so long.

9th Day of Treatment & Emma's 17th Birthday

2009-04-03T14:02:00.000+13:00

Today Emma arrived at the hospital to be greeted with birthday wishes, gifts and cake from the nurses and patients. The birthday cake was make up of heaps of "Tastycakes" which is something unique to Philly. It was very sweet and of course delicious! After the treatment Emma came home and slept for 5 hours and woke up disappointed to have missed so much of the day! There have been some more improvements - today the pain has slightly decreased in her foot. We have ended the day going out for tea at an Irish restaurant and stopped off for ice cream at a trolleycar icecream parlour.

Thank you very much for all your birthday messages and emails.

Day 8 Treatment

2009-04-02T13:44:00.000+13:00

Emma did not sleep very well last night and was quite uncomfortable going in to the infusion room this morning. She came out happy a few hours later. After a couple of hours rest we headed (at her insistance) to the King of Prussia shopping mall - reportedly the largest on the US east coast. 400 shops......yuk! Made some people happy though!

Day 7

2009-04-01T10:38:00.001+13:00

Had my 2nd day of Ketamine for week 2 2day and I'm beginning to get quite used to going to the hospital to get an infusion.
My outlook on the infusion has changed a little, I think I'm more hopeful and excited about the outcome and also not scared to go to the hospital as I now know what to expect. It's been really amazing for me meeting other people that have RSD, I'd always felt so alone, that no one could understand, but now I'm sitting in a room, daily, with other people that have RSD too and it feels good to be... normal... I guess that's not the right word, but they just know how it feels.
I've made good friends with Bob and Mary, 2 other patients that started at the same time as me and will finish at the same time as well. They make me laugh when we start becoming more conscious, as they too laugh at me when I'm acting "tipsy". Bob and Mary, and the nurses make the infusion tolerable, even funny at times. I must say it is hilarious when Bob/Mary are more out of it than me, so I understand my family and my new found friends finding me funny when I'm a..bit... out of it.
The ketamine is no longer making me feel sick, and though I'm still tired after the infusion, I prefer to stay awake and my spirits are very high with the progress.
I'm quite excited today because my hands are.. different. I thought they were normal before, but now everything I touch is so much different to how I remember. I'm having a lot of fun playing with my hands, it's more exciting than you could think!!! and I thought that they were normal... haha so I'm looking forward to the next coming days hoping the pain in my foot will subside a little.
I can't wait to get home
All my love

Day 6 Treatment

2009-03-31T13:00:00.000+13:00

Emma had 200mg of ketamine over 4 hours again today. She came out appearing to have had "a few too many" and was quite comical for an hour or so afterwards. Apparently Pink Floyd on the ipod was what put her in such a happy mood and she insisted that she had been to space
and was surprised that she could still breathe there. Perhaps it was the dark side of the moon? She walked up the stairs of our house afterwards though was a bit wobbly. She has not slept this afternoon but instead has read her new book "New Moon" (a part of the "Twilight" series). We've all had a quiet day reading as it was cold out again. We've just closed off the day toasting marshmellows on the open fire.

Weekend sight-seeing

2009-03-30T13:58:00.001+13:00

We've just had a great weekend sight-seeing. Emma had a very hard day with back pain on Saturday but we were still able to drive out into the Pennsylvania countryside to the Amish "Dutch Country". We were amazed just how many horses and carts we saw. It was a very strange place - the horses and carts were mainly driven by boys or men with no passengers. The carts are old style but with modern rear-view mirrors and indicators. They race along highways battling tour buses and on-coming traffic. It appeared that the women were home sweeping - the most common activity we saw at the farm houses. We drove around the countryside for a couple of hours. I had told my boss that I was tired of technology and that I might stay with the Amish but we didn't really make contact so I'm still not sure about that one. Sunday we had a slow start and then went to the Philadelphia Museum of Art (photos from the steps of the museum are below). Emma's health was much better on Sunday and we all had a great time and felt very cultured. We were surprised at how many of the classics were in the museum; Monet, Renoir, Picasso, van Gogh etc.

5th Day & First Week Complete

2009-03-28T07:03:00.000+13:00

Emma has finished the infusion today in high spirits. The infusion was over a longer period today so the patients could be more coherent when the Dr did his rounds. Julian and I had a chance to speak to the Dr after the infusion and he said he was pleased with the progress to date. Emma is less sensitive around her neck and arms and is now able to wriggle her toes on her right foot - her toes were pretty much frozen before. Her hands are still warm and overall she is doing really well. He said that next week is where we will see the most improvements.
It's now 2.30pm and instead of sleeping Emma is keen to go for a look around the neighbourhood so we are off shopping!

4th day of Treatment

2009-03-27T12:33:00.000+13:00

Today the ketamine infusion was increased to 200mg over the 4 hours. Emma is feeling good now after a deep 5 hour sleep this afternoon, but towards the end of the infusion she got quite upset - a bit disorientated and also with pain. The barometer pressure dropped last night/this morning and when this happens it causes an increase in pain (unfortunately happens in all RSD patients) and for Emma it causes an increase in her muscle spasms in her right foot and leg. It is part of the infusion protocol that they periodically test her pain levels at various points. Some nurses have simply asked "If I squeezed you foot that'd be a 10 out of 10 right?" while others actually do the squeezing which causes a lot of pain. She has been given some Zanaflex (tizanidine hydrochloride) 4mg morning and night to help with the spasms. Dr S. is trying to find another doctor here that will treat Emma, as an outpatient, and perform a spinal procedure for the muscle spams. Emma has had these spasms for years but nothing has been prescribled to her before. Dr S. has also recommended more nerve blocks for the spasms in NZ. While Emma has the infusion we are not allowed in the room as it is kept quiet and limited light as most patients sleep. During the infusion Dr S comes and sees the patients and discusses their condition with them. We have been told that we will get a chance to have a catch-up with Dr S. tomorrow. Its 8pm now and Emma is feeling good and eating well.

Emma's View

2009-03-26T12:20:00.000+13:00

well had my third treatment of ketamine 2day, feel much better than i did the day before, as i was given medication to stop me being sick. But still can't wait till it's over. I'm looking forward until friday so that i can take the iv out of my arm... it's getting really itchy!
2moro I'll have the maximum dose of ketamine (200mg) so hopefully I'll cope with that dose and can continue with that dose until the end of the treatment.
Sleep back at the house after treatment has been amazing, i haven't had such a good, uninterrupted sleep in years.
Looking forward to coming home and seeing more results from the treatment (hopefully a decrease in pain!!!)
Love to you all,
Emma xxoxx

Photos at the clinic

2009-03-26T12:05:00.000+13:00

In the Infusion Room before the treatment started. That's not a bad smile after a 5Am start! There are 11 of these chairs in the infusion room and there have been 6-8 other patients having the same treatment at the same time.

5AM starts are catching up! This extra sleep came in handy when Luke and I had an 8km walk to Chestnut Hill this afternoon.

Day 3 Treatment

2009-03-26T11:47:00.000+13:00

Another 5AM start to get Emma to the infusion room by 7AM. Today she received the same dose as yesterday (150mg of ketamine over 4 hours). She is taking 1mg of lorazepam morning and night to avoid the bad dreams that ketamine would otherwise cause. She calls these her "Harry Potter pills" as Harry was given something similar after a clash with "you know who". She continues to have midazolam at the beginning and the middle of the infusion to help with nausea and today she was also given something else to stop her being sick. Tomorrow the dose of ketamine will be taken to 200mg over 4 hours and she will continue on this for the rest of the week and all of next week. After the infusion Emma comes out tipsy and quite wobbly. The unsteadiness results in me carrying her up the stairs when we get back to our house. She has something to eat and then falls asleep. She says that she is sleeping the best she has in years. Dr Scwhartzman has said that no-one with RSD sleeps well. After 3-4 hours sleep she wakes and is very hungry again - has a meal and then, of course, a big plate of icecream.
The weather is improving - temperatures have risen quite a bit. Today's walk for Nikki and Luke to see the Liberty Bell while Emma had the infusion was at a relatively balmy 4 degrees C.

Day 2

2009-03-25T05:41:00.000+13:00

Day 2 and Emma's ketamine infusion was increased from 80mg to 150mg over the 4 hours. They had originally planned for day 2 to be at 100mg but she coped really well with the previous day. Tomorrow's dosage is likely to be at 150mg. Emma was sick a few times at the end, but overall is coping really well with the treatment. After Day 1 we could see some signs of the treatment starting to work for Emma. One thing is her hands which are normally cold and clammy, are now dry and warmer.

Our Phili Neighbourhood

2009-03-24T10:50:00.001+13:00

Thanks to all of our family & friends in New Zealand for the emails and feedback on the blog. Emma loves hearing from you all. We all really appreciate it.
We are renting the upstairs section of a house in Mt Airy - Germantown, Philadelphia. The place is working out well but a tad chilly! A couple of electric heaters and a big open fire that puts most of it's heat up the chimney! Spring seems to be here according to the trees beginning to bud & blossom but there is a cool wind most of the time. It takes us about 30 minutes to drive down to the hospital in the center of Philadelphia.

Emma has slept for a few hours this afternoon after the treatment and is back to her cheeky old self and her usual appetite for ice-cream has returned.

Strollin' in the 'hood

Upstairs - Our place

The neighbourhood is filled with beautiful old houses

Co-op store across the road provides the food and has a great community atmosphere

1st Day of Treatment

2009-03-24T07:19:00.000+13:00

The treatment went well today. We arrived at the hospital at 7am and Emma had an IV line put in by 7.30am. She was taken to the infusion room and given a lazy-boy chair to sit in. She had with her a pillow and blanket, and mp3 player, so she was quite comfortable. She was first given Midazolam at the beginning of the infusion and again half way through, this is to combat potential side effects of the ketamine. Emma tolerated the 4 hour ketamine infusion well and tomorrow they will be scaling up the dose quite a bit. It's now 3 hours after the treatment and she is sleeping back at the house. The staff have been really good to Emma and making a fuss of her. Emma is Dr Schwartzman's first NZ patient. I have just read that Dr Schwartzman has been judged America's top Pain Physician and one of the top 3 Neurolgists in 2007-2008 (as judged by 50,000 expert physicians), so we think she is in good hands! Dr S. has said to Emma (and us) quite a few times that she is "one tough kid".

Emma's Photos

2009-03-23T13:10:00.001+13:00

The White House

World War II Memorial

Mid-air squirrel

The squirrel Luke and I fed

Sea Turtle bones at the National Museum of Natural History (BEST PART... Fred's great granddad)

Update

2009-03-23T12:49:00.000+13:00

Well... been in America for over a week and missing home lots!
it's really cold in philadelphia and can't go outside without millions of layers!
Went to Washington DC in the weekend... was even colder than phili if that's possible.. got too cold an had to go back to our hotel, well i did any way.
The white house was much smaller than i expected... and really white!!! spose that goes without saying though.. there were secret service people on the roof, kinda freaky.
went to the art museum where there were really cool photographs by Robert Frank.
I got to feed this really cute squirrel so i'll post a few photos of it... and other cool stuff we've seen.
Treatment starts tomorrow so pretty hopeful about the outcome :D

More photos

2009-03-19T15:11:00.000+13:00

Newport Beach, Orange County, California

Philadelphia. Emma's appoinment was in the building behind.

1st Visit with Dr Schwartzman

2009-03-19T06:37:00.001+13:00

We arrived in Philadephia yesterday and the weather is quite similar to NZ only with a brisk wind but not too cold. Today Emma had her appointment with Dr Schwartzman at Drexel University Medical Hospital. It was reasurring to meet with a Doctor that has had so much experience and knowledge working with patients that have RSD. He explained many things to us and gave Emma a thorough examination and said she has full-blown/full body RSD, not just her foot/leg where she exeriences the most pain. Through this exam he pointed out to us symptons that Emma has that had not previously been connected to this disease. It was really reassuring and gave us lots of hope. Emma begins treatment on Monday and Dr S. and his team have a special infusion room where they treat RSD patients daily with the treatment Emma is scheduled for. They showed us the room where several patients were undergoing the treatment. He explained that 50% of people that have the coma treatment (that Emma won't have - only available in Germany and Mexico) are pain free but that the outpatient infusion that Emma will have has more varied results. He said that there will be improvement but it is unknown to what extent.

Friday - Double Black

2009-03-16T19:51:00.001+13:00

Yes - two Friday the 13ths in a row as we crossed the date line. We'll call it lucky though. The only issue we had was that the rental car company were out of both GPS's and maps. We travelled from LAX to Anaheim using only an A4 size photo copy map of LA. We found ourselves on the pacific coast highway which surely was not the fastest route but quite interesting and we eventually found our hotel about 4 hours later after a battle with a strange numbering system on our street which is 10 miles long. I spent the evening downloading the USA western region map for our own GPS and wishing I had done that before we left. The car is a dodge charger which impressed Luke - we needed a full size car to fit the wheelchair in. Not much room left for luggage! Yesterday we had a great day at Disneyland and had fine navigation there by none other than Darth Vader (via our GPS). Today's travelling was navigated by Hannibal Lecter whcih made for a few interesting moments on the freeway. We seem to be running on LA time in the mornings and NZ time in the evenings which simply adds a few hours extra in the day. So as it's about midnight and we've walked the mean streets of LA all day (and survived!) we'll call it a night. Highlights of the day - Meal at west hollywood. Lowlight of the day - parking in LA's fashion district - was expected to surrender my keys so that attendants could juggle the cars all day as there was not enough room. Quite another world in that part of town - the rest of downtown LA was practically deserted as it was Sunday.

First few days in LA

2009-03-16T19:40:00.000+13:00

The flight over was good, and most of us managed to get a few hours sleep. Emma travelled reasonably well, much better than we expected. We are now up to date with the movies. Saturday was a full-on 12 hour day at Disneyland and it certainly lived up to its reputation. There were thousands there and huge queues at the rides, with the most popular being over an hour. Emma was given special treatment and was able to enter through the exit lines and go straight to the front - there's got to be some perks to being in a wheelchair!

Sunday was a sight-seeing day spent covering Down Town LA, Hollywood, Beverley Hills & Santa Monica. Also saw some famous stars on Hollywood's Walk of Fame.

LA Photos

2009-03-16T19:21:00.000+13:00

Downtown LA - Pershing Square - where are all the people ? (Sunday)

Pershing square - LA

Disneyland

Luke becomes jedi

Main street USA - Disneyland

City Hall - LA

Final tests complete and ready to go

2009-03-12T20:46:00.001+13:00

Quite a few tests were required before heading to Philadelphia. A full series of blood tests, cardiology tests and a psychiatric clearance were required. The test that proved most difficult to have was a Tilt Table Test. All of the hospitals in our local area had long waiting lists and could not do the tests for several months - which woudl be too late! Thanks to Christchurch hospital for fitting Emma in at short notice. Our only backup option for the test was to have it in Philadelphia at a cost of $1000 US so flying to Christchurch was a great saving! Emma was picked up in Christchurch by her Grandmother, had the test and then spent a very pleasant weekend with family in the south. Emma fainted on the Tilt Table after 10 minutes or so. Her blood pressure returned to normal quite quickly and so it was a good result for clearance for the ketamine treatment. Unfortunately the Doc grabbed her RSD foot to help her gain her balance after fainting. :-( :-( I think Emma needs to wear a sign when seeking medical treatment "Don't touch the foot!".

So tomorrow we fly out Auckland to Los Angeles.

My Overview

2009-03-08T15:54:00.001+13:00

My name is Emma and I have Reflex Sympathetic Dystrophy (RSD), commonly referred to as Complex Regional Pain Syndrome (CRPS). I have suffered from this pain condition for six years, since the age of 10 and it has completely changed my life. I first got RSD from a minor sprain injury, and was diagnosed with RSD months later. My life became a battle in which I had to fight the pain to continue my life. I had to give up all sports which I had previously loved and it took me a long time to accept that I wouldn’t be able to run again like I once had with so much joy. I have tried all the typical treatments for RSD including sympathetic nerve blocks, acupuncture, physiotherapy, tens machine, pain medication… but nothing worked and the pain has continued to get worse. A good day is a day in which I can cope with the pain. The pain is always there, but I am able to smile and laugh and feel the joys of life. On a bad day the pain is all I am able to see. A bad day is a day where I have failed to lock the pain away and once again it comes to control my life. It is hard for me to describe the pain as it varies greatly and there are often so many different types of pain, often at once. The most continual pain is the burning sensation. It is as though my foot has been placed in a fire, and I can’t pull it away. It continues to burn.

Photos

2009-02-28T16:30:00.000+13:00

Emma and Michael (bf)

Emma and Nikki (mum)

Aleishia, Emma and Luke

Ball season! Note the high-heels! Emma loves her high-heels and finds the angle less painful for her foot. We worry about risk of injury but Emma insists.

Emma free-loading behind Dad. (Emma has not been able to pedal a bike since 2002)

Emma (bass) on stage with Montana Late

Emma (right) and friends prepare for school ball

Emma's beloved turtle Fred

Emma's plans for treatment in Philadelphia

2009-02-28T15:30:00.000+13:00

I'm setting up this blog as a space where we can record Emma's journey to Philadelphia so that her family and friends in New Zealand can remain informed of her progress. This blog is also open to the public because over the years we have been given hope and gained a lot of knowledge by following the treatment options that other sufferers have undertaken. In the past year we have closely followed the progress of Alessa's treatment with ketamine and thank her and her parents for sharing their story.

Emma has suffered from Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) since she was 10 years old (now almost 17). The pain in her right foot is constant and debilitating and severely affects her quality of life. It is becoming increasingly difficult for Emma to continue with her schoolwork as the pain continues to increase and now affects her entire right leg and back. After many years of unsuccessful treatments we have contacted Dr Robert Schwartzman in regard to the research program he is conducting for CRPS sufferers using ketamine for treatment. He agreed to see Emma when she was 17 and so our plans to travel to Philadelphia began to take shape.

An overview of ketamine infusion therapy (Emma will hopefully have the outpatient protocol described in the article)
ketamine research papers (search for ketamine on the page)
Case report: Complete recovery from CRPS following ketamine treatment (my favourite article!)

It was not easy to make the decision to take Emma to the US for treatment which is still in a research phase. The decision for Emma has been easier and she has not wavered from her immediate desire to try the new treatment. We are under no illusions that this treatment is a magical cure but it is certainly a path that is producing some excellent results for many who suffer from this crippling disease.