Definately not the picture I had in my mind of how the equipment would look.
Tuesday, March 23, 2010
Photo's of the Proton Centre
We were very surprised when we walked into the building to see how beautifully it has been decorated. Very modern and the most beautiful colours. The atmosphere is great and welcoming and the staff very friendly and helpful.
Proton Centre in Orsay-23 March 2010
We spent the afternoon at the South University in Orsay where the proton centre is located. When you look at the buildings, they look like old buildings, but when you step inside it is so colourful and you immediately feel welcome. The staff were friendly and very helpful, almost everybody can speak English so we are definitely going to be able to communicate more effectively.
Today Lize had her masks made for the proton treatment and then had her first simulation. I was fortunate to be able to see how they make the masks, it was really an experience to see this. The masks are very different to the masks that they use for radiation. The material gets heated in a oven and then put over her face, they only clip out a small portion around her nose. They then pull the material and shape it around her neck face and head, after this they use ice packs to cool the material down. In 40 minutes they made 2 masks for 2 different head positions. After this we were taken through for her proton simulation , once again I was allowed to quickly go in to see the equipment and then I had to leave her behind. She survived and she was just happy that she did not have to have needles stuck into her arms or hands. She has not said much more about the treatment(she will take her time to reflect and then tell me how she really feels).I must say the equipment looked quite different to the picture I had in my mind. I will post some pictures so that you can see what it looks like. I did try to get Lize in the picture, but she did not feel like posing for a photo.
Everything went very smooth today and we officially start on the 29th March and then it will be every day until the 5th May 2010.
The last 2 weeks have been quiet as Lize has slept most of the time, we went to the Orsay Mall last week to buy some groceries and it was such a treat to get out and just have a bit of fun. We bought the biggest fried chicken and had an absolute feast. We have not been sightseeing yet but plan to shortly. Lize-Mari is stronger and feeling much better, we have bought her some sunglasses so that she does not feel self conscious when we go out(her right eye still has complete double vision and has moved in towards her nose, it does not move outwards at all). I am sure that this will sort itself out in time, if not we will have surgery done on her eye when we are back in SA.
Thank you for all the e-mails, I really enjoy reading them as it keeps me up to date on what is happening back home and it also makes me feel more in contact with everybody.
Take care
Love, Linda
Today Lize had her masks made for the proton treatment and then had her first simulation. I was fortunate to be able to see how they make the masks, it was really an experience to see this. The masks are very different to the masks that they use for radiation. The material gets heated in a oven and then put over her face, they only clip out a small portion around her nose. They then pull the material and shape it around her neck face and head, after this they use ice packs to cool the material down. In 40 minutes they made 2 masks for 2 different head positions. After this we were taken through for her proton simulation , once again I was allowed to quickly go in to see the equipment and then I had to leave her behind. She survived and she was just happy that she did not have to have needles stuck into her arms or hands. She has not said much more about the treatment(she will take her time to reflect and then tell me how she really feels).I must say the equipment looked quite different to the picture I had in my mind. I will post some pictures so that you can see what it looks like. I did try to get Lize in the picture, but she did not feel like posing for a photo.
Everything went very smooth today and we officially start on the 29th March and then it will be every day until the 5th May 2010.
The last 2 weeks have been quiet as Lize has slept most of the time, we went to the Orsay Mall last week to buy some groceries and it was such a treat to get out and just have a bit of fun. We bought the biggest fried chicken and had an absolute feast. We have not been sightseeing yet but plan to shortly. Lize-Mari is stronger and feeling much better, we have bought her some sunglasses so that she does not feel self conscious when we go out(her right eye still has complete double vision and has moved in towards her nose, it does not move outwards at all). I am sure that this will sort itself out in time, if not we will have surgery done on her eye when we are back in SA.
Thank you for all the e-mails, I really enjoy reading them as it keeps me up to date on what is happening back home and it also makes me feel more in contact with everybody.
Take care
Love, Linda
Wednesday, March 10, 2010
Update on Lize-Mari Wed. 10 March 2010
Lize-Mari had her fiducial markers inserted into her head on Monday at the Necker Enfantes Hospital. She chose to have it done under local anaesthesia. I think this was quite an experience for her as she told me in detail what they did and what was discussed during this procedure. The Doctors told her that these markers will always stay in her head as they are very expensive, more expensive than platinum. They struggled again to get her veins for the drips and tried 8 times. Her wrists and hands are blue all over.
Later in the evening she went for an MRI scan on her back, we are still waiting for the results(Dr. not at the hospital this week). This was the most traumatic event of the day for her. The drip came out and her blood spurted everywhere and they had to re-do the scan, she was alone as they would not let me in-they can be glad because I would have taken her out and refused that they continue with the MRI. We were only discharged at 20H40 and by this time the feeling on her head started coming back full force and of course she now started experiencing pain. Well it was only 2 degrees outside and I decided to get a taxi as I was not going to let her get in and out of trains in this cold feeling the way that she did. We got home at 21H40, glad that we were home and that the day was finished.
On Tuesday we had an early appointment (09H00) to meet with Pr. Habrand who is managing the proton treatment. We spent 2 hours with him as he explained the positives and the negatives of this procedure. She then had more scans and we were glad to get home at 19H20.
Today is a rest day and we are so glad. Lize has slept through from last night until now ! 15 hours in total, I am glad as this is obviously what she needs-rest. Tomorrow we go back again to The Institute of Gustave Roussy for more scans and for the preparation of her mask that she will need for the proton procedure. She also has to go for audio gram tests and opthamology tests before they will start the next process. They will also do some blood tests to test her hormone levels as they worked very closely to her pituitary gland. She will then get to rest for 2 weeks as the Doctors want her to be strong before they will start the next process. This will give her time to recuperate and to adjust to her circumstances.
If she feels better we can maybe go to TOWN and do some sight seeing. I would love to go to the Opera house and the Louvre museum. As Lize loves art she also wants to visit these places. Will keep you posted over the next few days.
Love
Linda
Later in the evening she went for an MRI scan on her back, we are still waiting for the results(Dr. not at the hospital this week). This was the most traumatic event of the day for her. The drip came out and her blood spurted everywhere and they had to re-do the scan, she was alone as they would not let me in-they can be glad because I would have taken her out and refused that they continue with the MRI. We were only discharged at 20H40 and by this time the feeling on her head started coming back full force and of course she now started experiencing pain. Well it was only 2 degrees outside and I decided to get a taxi as I was not going to let her get in and out of trains in this cold feeling the way that she did. We got home at 21H40, glad that we were home and that the day was finished.
On Tuesday we had an early appointment (09H00) to meet with Pr. Habrand who is managing the proton treatment. We spent 2 hours with him as he explained the positives and the negatives of this procedure. She then had more scans and we were glad to get home at 19H20.
Today is a rest day and we are so glad. Lize has slept through from last night until now ! 15 hours in total, I am glad as this is obviously what she needs-rest. Tomorrow we go back again to The Institute of Gustave Roussy for more scans and for the preparation of her mask that she will need for the proton procedure. She also has to go for audio gram tests and opthamology tests before they will start the next process. They will also do some blood tests to test her hormone levels as they worked very closely to her pituitary gland. She will then get to rest for 2 weeks as the Doctors want her to be strong before they will start the next process. This will give her time to recuperate and to adjust to her circumstances.
If she feels better we can maybe go to TOWN and do some sight seeing. I would love to go to the Opera house and the Louvre museum. As Lize loves art she also wants to visit these places. Will keep you posted over the next few days.
Love
Linda
New Home in Orsay-South of Paris
Our second home. As you can see, we have a magnificent view. Here we can see trees and just open spaces. We also have a balcony which is great because we can open the doors and the sun just lights up everything. Even though there are no shops around and it is very quiet, I definately prefer staying here than in the City Centre of Paris.
Big 40th in Disneyland
Thanks Mom for treating me to Disneyland on my 40th Birthday. This day I will treasure in my heart for always. An experience that will always be remembered!
Hospital Lariboisiere
This is the Hospital where Lize had her main surgery. There is so much character in these old buildings and they have the most beautiful statues. They have the most beautiful chapel and I really enjoyed spending some time here.
It was a bit scary late at night-almost like the hallways were haunted, maybe because it is so big, the corridors just seem go on and on forever.
Wednesday 10 March 2010
The night before Lize's surgery. Of course Cowboy and Cuddles also had to be hospitalised!!!!!
Sunday, March 7, 2010
Friday, March 5, 2010
Happy Birthday Linda!
PAG wishes you a very special day and sends all our love to wash away that homesickness!Thursday, March 4, 2010
Orsay - Preparing for the Proton Therapy
Lize-Mari came out of hospital on Tuesday and we moved to Orsay where we will now be staying for a while. Here it feels more like home - out of the city with lots of trees and grass. Lize-Mari is still very weak and we had to take a Taxi yesterday as she could not walk to the Metro station. She is very pale and keeps getting pains and cramps in her arms and legs. I am sure with rest it will get better. We are seeing a Doctor today at the Necker Enfants Hospital. Lize-Mari will be booked in on Sunday and go into theater next Monday morning. They will implant fiducial markers in her skull. Not sure how this works but will let you know when we come back this afternoon.
Monday, March 1, 2010
Recovering Well and Moving On
This is one of the few moments that I have allowed myself to come home and spend some time away from the hospital. I have literally only come home to shower and rush back to the hospital to sleep there every night. I must say my body is getting used to it by now.
It has been a tough time. Lize-Mari's surgery was very long and we have had a few complications. She has double vision, but the Doctors hope that it will improve in about 6 weeks. She has had cerebral fluid leaking out her nose and thus had to go back into surgery last Sunday, this is to prevent infection going to the brain area. She still has the drainage pipe in her spine. She has suffered with severe headaches and pains and she has had to lie still on her back for the last week. I must admit we were very worried about her.
Yesterday her nose was dry the whole day and last night for the first time she had a good night's rest. When we woke up this morning I could see the change in her. She has also started eating now, little bits here and there. She is starting to act normal and told me that she is bored today- a very good sign! The Professor said that if all goes well, she can possibly get out of Hospital on Monday. They will still keep the drainage pipe in until they are satisfied that there are no more leakages.
Anton and I had to meet with Pr. Habrand on Wednesday to discuss her proton therapy. She was scheduled for assessments, however this has now been postponed. The Institute is called " The Gustave Roussy Institute" and is a cancerollogy institute, situated in Villeuf which is South of Paris. I wish you could see this place, it is massive with 10 stories and 2 lower basement levels. The equipment is state of the art and you can see that they don't play around. It was however very sad to see so many children there with no hair and obviously coming out of treatment, but the smile and courage on their faces was something that made me stand back in awe of them. This again makes me realise how fortunate we are that we are able to correct Lize-Mari's tumour before it gets to an advanced stage. I know we still have many challenges going forward but we are ready to face them.
Next week we get to rest and on the 9th March we are meeting with Pr. Habrand again in Villejeuf. Lize-Mari will then be scheduled for further surgery at the Necker Enfantes hospital where they will implant markers in her head which are required to perform the proton therapy. I still need to get more information on this.
Yesterday whilst my Mom was sitting with Lize-Mari, Anton and I went to Orsay to see where we will be staying. It takes 1 hour with the RER Metro to get there. It is very quiet and here you see more open spaces and houses. It is very different from the city of Paris. We are very happy with the accommodation -it is safe and clean and only 10 minutes walk away from where Lize-Mari will have the treatment. Should Lize-Mari leave the Hospital on Monday we will leave for Orsay-Ville on Wednesday and start the next leg of our journey.
Lize-Mari has been frantic every time i wanted to leave the hospital but the last few days I have managed to slip out and let my mom stay with her. The nurses and Doctors have been fantastic and very helpful. Many times we have misunderstood each other and then use actions to explain our different needs. I will miss many of the friendly nurses and Doctors at the hospital as they have shown me a different side to the people in Paris. With every shift change they come and say hi to Lize-Mari and fuss over her(they are not used to having children here in the hospital).
Thank you to everyone back home for all the e-mails and messages. It has really warmed our hearts this side, especially when I felt far away from home.
It has been a tough time. Lize-Mari's surgery was very long and we have had a few complications. She has double vision, but the Doctors hope that it will improve in about 6 weeks. She has had cerebral fluid leaking out her nose and thus had to go back into surgery last Sunday, this is to prevent infection going to the brain area. She still has the drainage pipe in her spine. She has suffered with severe headaches and pains and she has had to lie still on her back for the last week. I must admit we were very worried about her.
Yesterday her nose was dry the whole day and last night for the first time she had a good night's rest. When we woke up this morning I could see the change in her. She has also started eating now, little bits here and there. She is starting to act normal and told me that she is bored today- a very good sign! The Professor said that if all goes well, she can possibly get out of Hospital on Monday. They will still keep the drainage pipe in until they are satisfied that there are no more leakages.
Anton and I had to meet with Pr. Habrand on Wednesday to discuss her proton therapy. She was scheduled for assessments, however this has now been postponed. The Institute is called " The Gustave Roussy Institute" and is a cancerollogy institute, situated in Villeuf which is South of Paris. I wish you could see this place, it is massive with 10 stories and 2 lower basement levels. The equipment is state of the art and you can see that they don't play around. It was however very sad to see so many children there with no hair and obviously coming out of treatment, but the smile and courage on their faces was something that made me stand back in awe of them. This again makes me realise how fortunate we are that we are able to correct Lize-Mari's tumour before it gets to an advanced stage. I know we still have many challenges going forward but we are ready to face them.
Next week we get to rest and on the 9th March we are meeting with Pr. Habrand again in Villejeuf. Lize-Mari will then be scheduled for further surgery at the Necker Enfantes hospital where they will implant markers in her head which are required to perform the proton therapy. I still need to get more information on this.
Yesterday whilst my Mom was sitting with Lize-Mari, Anton and I went to Orsay to see where we will be staying. It takes 1 hour with the RER Metro to get there. It is very quiet and here you see more open spaces and houses. It is very different from the city of Paris. We are very happy with the accommodation -it is safe and clean and only 10 minutes walk away from where Lize-Mari will have the treatment. Should Lize-Mari leave the Hospital on Monday we will leave for Orsay-Ville on Wednesday and start the next leg of our journey.
Lize-Mari has been frantic every time i wanted to leave the hospital but the last few days I have managed to slip out and let my mom stay with her. The nurses and Doctors have been fantastic and very helpful. Many times we have misunderstood each other and then use actions to explain our different needs. I will miss many of the friendly nurses and Doctors at the hospital as they have shown me a different side to the people in Paris. With every shift change they come and say hi to Lize-Mari and fuss over her(they are not used to having children here in the hospital).
Thank you to everyone back home for all the e-mails and messages. It has really warmed our hearts this side, especially when I felt far away from home.
The Surgery
Lize-Mari successfully underwent her operation on Tuesday 17th February in Paris and the doctors managed to remove a large portion of the Chordoma tumour at the base of her brain. The surgery lasted over 9 hours and she was in recovery for almost 4 hours. There are several complications however and she is in a lot of pain for which they are giving her morphine. Lize-Mari will have to have another operation tomorrow to prevent infection from setting as the membrane of her brain has not closed properly. I am very relieved that I have been allowed to stay in the intensive care unit with Lize-Mari and thank you so much to everyone for all your support.
Lize-Mari Arrives in Paris
We had a sad farewell with the family and we left for Paris with mixed emotions. We were all crying and the hardest was to walk away whilst I saw Danielle, Damian and the rest of our family crying at the airport. This was definitely my weakest moment so far!
We left JHB on Wednesday 10th February at 19:15 and arrived in Dubai at 05:15(03:15 our time). The flight out of Dubai was delayed and we only left for Paris at about 09:00. The second half of the trip felt like it was taking forever as we were in the air for 15 hours. We finally arrived in Paris on Thursday. We waited patiently for our suitcases and guess what? All of them arrived except for mine! I had promises from Emirates that I would have it that evening. We then contacted the owner of the apartment in Paris to arrange to collect the keys, but we could not reach the owner and we managed to contact the agency and they promised to make a plan for us.
We left JHB on Wednesday 10th February at 19:15 and arrived in Dubai at 05:15(03:15 our time). The flight out of Dubai was delayed and we only left for Paris at about 09:00. The second half of the trip felt like it was taking forever as we were in the air for 15 hours. We finally arrived in Paris on Thursday. We waited patiently for our suitcases and guess what? All of them arrived except for mine! I had promises from Emirates that I would have it that evening. We then contacted the owner of the apartment in Paris to arrange to collect the keys, but we could not reach the owner and we managed to contact the agency and they promised to make a plan for us.
We then decided to take the train into Paris. This was the first time that Lize-Mari has been on a train. But we managed to get ourselves lost and walked around the subways for over 1.5 hours. At least we know now how the system works!! We eventually got off at Auber station as this was the closest to Rue de Caumartin which is the street where we will be staying. Whilst walking to the apartment, the snow started falling. It was such an experience to feel these little small flakes fall on your face and to suddently realise that we really are in Paris!
After walking the streets for an hour or so, we eventually found our apartment. We settled in and then went shopping for a few essentials at Monoprix (just like Pick 'n Pay). Very upset to have not received my suitcase as promised and went to bed praying that Friday would be better.
Friday morning came and at 8am as it was still dark outside. We have a lovely view from the apartment. We left for the subway to go to the Hospital to Meet Pr. Bernard George who is the skull base specialist. We first met with the anaesthetists, then booked Lize-Mari's bed in the hospital for the 16th February and finally met with the main man. Our first impression of Pr. George was very good - he has alot of experience and we felt very comfortable with him. He walked us through the process of the surgery, what can be expected and what the risks are. From his discussions and the way he explained everything to us, we know that the decision we made to bring Lize-Mari to Paris was the correct one. There will be a total of 5 Specialists in the surgery. Lize-Mari is not going to the children's hospital as first expected but will be operated on at the Hospital Labriosiere. She will be the first child(teenager) that will be treated at this hospital as it is traditionally only for adults. The reasons for this is that all the technology and specialisation for this type of tumour is here at this hospital and Lize-Mari's tumour is normally only found in adults.
The staff and everybody at the Hospital were really friendly and helpful. We spent about 4.5 hours at the hospital to get everything ready for her admittance next week Tuesday. She will have blood tests done so that they can order blood (I offered to donate blood, but in Paris they do not allow family members to donate blood for each other) and she will also have a CT scan and an MRI scan. She is scheduled to have the surgery next Wednesday 17th February.
We went back to our apartment happy that everything had been finalised and on our walk back I looked up to the sky and said a quick Thank You to God for bringing us here and for looking after us so far. It was a feeling of relief after we had met the specialists.
I eventually received my suitcase at 10pm on Friday evening. I have never been so happy to see my clothes and personal belongings as I did at that moment. Needless to say I slept like a baby.
This morning we woke up at 09:00 and it was still dark. The snow flakes were softly falling on the roof tops - what a beautiful sight! We slept in and decided in the afternoon to go for a quick walk on the streets. The people in Paris seem to always be in a rush -they don't make way for you and push and shove all the time. I have never seen anything like it. I must say the older people definitely have more respect for each other. We have met some friendly faces and today we were buying subs to eat and the girl behind the counter asked us if we were from SA as she recognised our accents. She had studied at Wits for 4 years, so not all the faces are unfriendly.
We can't really go out to sight see at this stage as Lize-Mari can't get sick before her surgery.
We already miss everybody at home!
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