Cycle 3 started today

The local picc line infection did not change the plan: cycle 3 of chemo started today (out of 6 cycles of 5 weeks, ending in August). The light infection should be easily dealt with with antibiotics. The plan is to remove the picc line before he leaves hospital for two weeks at home, continue antibiotics and put in a new picc line before the next infusion.

Paul was lucky to have Milio, Suzy's brother who is a paediatric cardiac surgeon, for a few hours in London. Milio (instead of the nurse - what a treat!) removed the wound staples in a surprisingly short period of time.

Suzy left today to everyone's regret.

Physio, then discharged

During the night, Paul's temperature went up but came right back to 37 in the morning. He was discharged just after physio.

Here are two short videos of his physio today:

Light infection

During mum's absence, Paul was happy at home with his caregivers Suzy and Jean-Paul.

Téta cooked a lot and Paul's weight is very much unchanged.

He had friends visits (Alexandre, Hadrien, Jamil, Francis, Rima) and a maths tutorship.

An NHS physio also visited for some exercise but it is mostly Suzy who is making sure Paul does his stretching and gets some massage with oil (offered to mum by Clara for Mothers' Day ... as always thank you Clara) and ice cubes.

His leg is expected to be painful for six weeks after surgery, mostly due to the flap which is a procedure to wrap a muscle from his calf around the prosthesis, in order to diminish the risk of infection.

He has to put a splint when walking during this period because he must not try to extend his leg by himself while his extended calf muscle slowly adapts to its normally extended position as a new resting position.

On the other hand (no pun intended), in order to get his bones to adapt to the prosthesis, he is asked to put as much weight as he can on his (ex) bad leg when walking with crutches.

On Friday, as he had a low 38s temperature, he was taken to Chelsea Westminster who found a light infection at the exit of the picc line (common with picc lines). This is dealt with IV antibiotics given twice a day.

Yesterday evening, Michel took Paul, Suzy and Philippe to Chelsea Westminster Hospital for the evening antibiotics injection. Paul really wanted to return to his bed and was worried the hospital would keep him. So, while waiting for the doctor's visit for his decision on staying or leaving, Paul ordered Philippe and Suzy to put their coats on, while he waited on his wheelchair with his anorak and hat on, in order to show the doc that he really absolutely had no intention of staying. But his fever remained stubbornly at 38 and he was not enthralled to learn he had to stay for the night in order for his temperature to be monitored.

This infection might change the plans for tomorrow's chemo but we'll see. Tomorrow, appointment at 9:30 am with Maria, Paul's paediatrician oncologist.

Paul is at home

Paul will now have four days to enjoy home before starting chemo again as soon as Monday if everything goes as planned.

Yesterday was difficult for Paul as his physio exercises were a bit tough

But today he got back his good humor. He is well and got his physio training (better than previous day).

Esther visited.

Mrs de Beaufort came for a private tutorship.

Next blog on Saturday as mum is away for 3 days.

A couple of photos of Royal National Orthopaedics Hospital in Stanmore:





Update: Mr.Skinner visited yesterday and said that if Paul was able to do the "stairs exercises" today, he would be discharged.

Update 2: Paul will be discharged today (March 25) at 1pm.

Back on two legs (ok four with crutches)

Paul started bearing some weight on his bad leg. For the first time in three months, this is exactly what is asked from him.

He was restricted to walk on it since diagnosis in December to avoid tibia fracture before surgery.

He had a physio session with Lucy this morning and bent his leg at 90 degrees.

Walking, 90 degrees, no fever, are the prerequisites for being discharged (perhaps Tuesday).

The surgeon Mr. Skinner visited and confirmed Paul is doing very well.

Clara came to see Paul for this first time and is worried physical fights at home will resume soon...

First stroll after surgery

Paul is recovering quickly.

His temperature is normal. His last drain was removed yesterday.

The epidural was removed today.

Paul had his daily physio execizes and he bent his knee at 80 degrees.

He stood up for the first time since surgery. It went well and he went outside on his wheelchair.

He should be back home by the middle of next week.

Back to semi-normal life

Paul had a long and restful night of sleep with watchful Anne-Marie.

He ate a mankouché (lebanese thyme pizza) for breakfast.

Mike, the nurse in charge of Paul, removed the drain and the thick bandage on his whole leg.

Paul was able to move his leg better and managed to bend his knee by 45 degrees. He will be allowed to go home as soon as he is able to bend his knee by 90 degrees and climb stairs (with crutches), and if his temperature is stabilized at 37 degrees (where it is currently).

Mike said he could perhaps be discharged as early as Saturday (that is in two days!) or more likely on Monday if he continues to improve at this rate.

Paul saw a movie and read very much.

The crowd is still as dense around him with Corinne who arrived today from Hamburg doing the night shift.

The weather has been generally excellent at Stanmore which is a place largely open on the outside, to such an extent that there are signposts inside the hospital, warning people to be careful not to slip in bad weather.

Paul's supporting crowd was able to sunbath profusely, while two wild geese were resting a few meters away.

This hospital is not at all about appearances: Ventilation is largely natural and only a few years ago, the two-hundred meter passageway taken by patients in their beds when going to the operating room or back to their rooms from the High Dependency Unit and which is now somewhat protected against rain but still open to the wind and outside temperature, didn't even have a ceiling. In times of rain, nurses would carry an umbrella above the bed or protect the patient as much as possible. This is in Great Britain of the 21st century!

But inspecting teams are seemingly always chasing dust or any sign of lacking hygiene and it seems that this hospital has the lowest incidence of infections in the UK. Natural ventilation may be a good thing after all. And we don't have enough words to describe the exceptional dedication of its staff and the excellence of its surgeons. An absolutely great hospital!

And we thank you all, family, friends, old and recent, met in London or on the internet (Susan, Kelly), for your thoughts, your prayers, for being and staying there really.

Out of High Dependency Unit

Yesterday evening, in the High Dependency Unit, Paul asked dad to see a movie on his mini-DVD player.

The night went fine although pain is not settled.

As he is otherwise well, he was taken back to his bedroom midday today.

He was mostly asleep all day.

Late in the afternoon, the physiotherapist made him do a few soft exercices so his bad leg doesn't become stiff.

His pain increased later and as Anne-Marie arrived for the night shift, the doses of analgesics were increased by the anaesthetist.

Follow-up has been consistently excellent and we cannot thank enough all the medical personnel who have taken care of Paul (including Anne-Marie).

Paul is starting to nibble.

Tumour out

Paul and mum had a good first night at Stanmore, ahead of surgery.

Paul was very amused to go to the operating theater on his wheel bed, through an outdoor semi-open plexiglass tunnel between wards, in the middle of the countryside.

After surgery, Mr. Skinner reassured us that all went as planned: tumour out, no visible tumour spread in neighbouring tissues and blood vessels, prosthesis in place.

Paul was taken from the operating theater to the High Dependency Unit and smiled when he saw us.

He was mostly asleep. We finally talked to him in early afternoon.

He will remain in the High Dependency Unit until tomorrow midday.

At Stanmore

Suzy arrived from Dubai and is staying 10 days with us, while Josy returned to NY.

Charles made us a surprise visit on his way to a dentist appointment and brought us many DVDs as Paul is staying 10 days at Stanmore.

Also Béatrice came.

Paul chose his car companions for the 1h drive to Stanmore: Suzy, Marie and dad, with Anne-Marie at the steering wheel whose mission was to stick to Pat who was doing the real steering in the front car and who proved more reliable than her GPS.

Surgery is at 8:30am tomorrow and should last 2h (4h with preparation). Afterward, Paul will be taken from Operations to the High Dependency Unit where he'll remain under constant observation until Wednesday morning.

We'll be authorized to visit him in the afternoon, at most in pairs. Anyway he'll be asleep most of the time.

His spirits are good.

Visits from the Neighbourhood and Far Away

Paul woke up at 5am and couldn't go back to sleep due to pain in the tibia.
We're looking forward for the tumor to be removed on Tuesday !

In the morning, he went for a hot chocolate with Josy at a nearby coffee shop.

Teta and Jeddo who arrived today from Beirut took him out for lunch.

Dad also arrived today.

Paul eventually fell asleep from 5pm to 9pm and missed his aunt Marie who arrived today from California, as well as Laure, Josy's sister-in-law, Anne-Marie and Alexis.

Tomorrow midday, we go to Stanmore Hospital which is one hour North of London, for surgery on Tuesday.

Pit Stop (in between hospitals)

Paul and his sleeping partner Marc woke up late and prevented us from speeding up their slow start.

The standby team (mum, Josy, Anne-Marie, Francis, Rima) ended up in Carluccio opposite the hospital.

Paul had an Xray that showed his tibia has no fracture (it was unusually painful during the last four days - probably, we are told, due to a not unusual inflammation caused by chemo).

Then Alexis, Jimmy and Luisa visited.

As the 48h cultures were also negative, and despite a continuous low grade fever, Paul was discharged from hospital at 1pm.

He asked to go straight to a restaurant.

In the afternoon, more visits from Nadine and her boys, Max and Paul, then Hadrien.

Meanwhile Clara was at a concert with Kara, Isabella, Sofia, Michele, and Eirini.

Low Grade Fever

First cultures were negative. Paul may therefore be discharged tomorrow if the remaining ones to be know soon are negative too. He remains however under antibiotics. His temperature is low but above 37.

Zeina was kind enough to take over at 7:30am from Danièle who headed to work to structure some fancy non-fashionable derivatives.

Josy landed from NY and headed straight to hospital.

Paul had a private maths tutorship interrupted by many unnecessary nurse checks.

Mum and Josy spent the afternoon with Paul, then Francis visited, as well as Vanessa.

Marc is doing the night shift, and as I am writing at 10:30pm, they are still having a great time in the ward. I know: This is crazy.

A passage by Chelsea Westminster Hospital

Late yesterday evening, Michel and mum took Paul to Chelsea Westminster Hospital as he had fever.

Because his immunity is low due to chemo, he was given antibiotics.

He will be discharged on Saturday or Sunday, just in time to go to Stanmore Hospital on Monday for surgery on Tuesday.

However this did not prevent his academic and social life to continue in this new environment:

Mrs de Beaufort gave a private tutorship to Paul, Leana and Alex. She came back later with her four kids ... just for fun.

Charles and his mother also visited.

Leana and Alex returned to Germany (we'll miss them!).

Zeina took over from Mum.

Danièle is doing the night shift.

And mum is taking more photos than a Japanese tourist in Paris.

Picnic in the park

Esther took Paul, Léana and Alexandra, along with little Anna, to picnic in Hyde Park. As a perfect Brit, she had all the necessary accessories including a blanket which is waterproof on one side. They spent the whole sunny afternoon there.

Clara is enjoying taking pictures of everybody.

We Can Do Links!

Paul is having a good time with his cousins Leana and Alexandra (Corinne left yesterday for Hamburg).

Today was particularly busy for them as they had a private tutorship in the Lycée's science lab.

Then Mrs de Beaufort took the four kids to the Natural History Museum along with Clara who skipped school arguing she had already missed the morning as she had her Grade 3 piano exam).

And nothing better than the Wii to finish up the day.

Paul is so excited (the house is full) that he did not sleep much.

He played a lot with his cousins. He's reading quite a bit too. He is in love with the Wonderful Adventures of Nils Holgerssons by Selma Lagerlöf. He doesn't care much about the geography of Sweden but there is real magic in each chapter.

Mrs De Beaufort came for lunch with her family.

In the afternoon, Paul went out for a walk then Francis visited.

Fun all day long

Corinne and her daughters Leana and Alexandra arrived from Hamburg. Paul was counting the hours before their arrival.

We had lunch at the Habib's followed by a walk in Hyde Park.

In the afternoon, Hadrien visited. All the kids had a great time playing at many games.

Then Myriam and Nabil came (Paul is sinking under more and more gifts and the apartment is not getting any bigger).

For dinner, all the gang went to a nearby restaurant on their own.

Paul had a great first day at home.

Cycle 2 (out of 6) finished!

We're back home and Paul is delighted after 2 long weeks in hospital.

His friend Alexandre visited and stayed for dinner.

Paul was generally fine over the last 2 days, despite moments of nausea and tiredness.

On Thursday, he had a private tutorship with Mme de Beaufort, then Téta and Jeddo kept him company (and vice versa we'd like to think). He was exasperated from being at hospital but his positive self came back roaring when we improvised a buffet dinner with the neighbours and Paul played cards with little Henry.

Today, Rima (one of his favourite caregivers) did art crafts with him, then he went to the day school. In the afternoon, he went to the adolescent floor to play pool.

10 days of freedom before surgery!

Two More Days to Go ...

This morning, Paul was attended to by Rima, then by Téta and Jeddo.

Paul is generally in good spirits but sometimes tired.

He had his daily doses of in-hospital activities that are so important to give him some sense of normalcy.

He will be spending the night with Anne-Marie.

He should be home by Friday evening. He'll then have some ten days to recover before surgery.

Despite a short night for no particular reason, Paul did his physio exercices early this morning. Then Louise, his physiotherapist, held a charity cake sale and Paul swallowed a few.

The results of yesterday's tests will not be known before next week but one of them is just meant to help the surgeon prepare his surgery and the other one to make sure Paul's kidneys are coping well (which they probably are). So we are not really holding our breath on those.

Paul had a French private tutorship with Mrs. de Beaufort then he spent the afternoon with Téta and Jeddo.

For the night, he swapped his nanny Josephine (another snorer.. woman this time) for mum. Clara, please please forgive mum for her uneven distribution of time between you and Paul recently ... Things will go back to normal in no time. That's a promise.

Today we went to hospital for the last week of chemo before surgery (confirmed for 17 March).
Paul had an IRM of the bad leg and a kidney test (results tomorrow).

He is doing very well.
We shopped in the hospital store then he wanted to have lunch in the hospital restaurant for once (despite the pile of home cooked food).

He will have the 4h Methotrexate chemo tomorrow and he should clear it out by Friday afternoon when he'll be discharged.

Paul on skype with Corinne and his cousins in Hamburg

Paul had a pleasant weekend, although mostly nauseous.

On Saturday, Anne-Marie, Alexis, and Marc returned from vacation and came immediately to visit, along with Jimmy who challenged Paul at a phone game.

Today upon waking up, Paul asked Teta to come and burn some incense "just for the smell".

Then Salomé (Clara's close friend) and her father Thierry visited.

Dad left in early afternoon .. and Paul disappeared until 9pm at the Habib's, enjoying the hustle and bustle of cousins and friends.

Clara is back from Hamburg.