Weekend prior to Chemo cycle 2

Paul is sleeping very well (catching up for hospital nights). He is in good shape and spirits. His teacher came this morning for a graded dictation. Then he tried his new wheelchair to go to the Habib's (5mns walk from home). Paul found it very convenient to read while mum was pushing. Clara found it very confortable too and she adopted it as her new living room chair.

In the afternoon, Hadrien joined to play at the Wii with Clara and Paul.

And grandma finally gave up on us and escaped to Anne-Marie's house, with her night luggage, for more space and calm...

Later, Clara and Paul had a piano lesson.
Clara and her new toy (the wheelchair)

Paul is doing well

Paul has been very well over the last two days. His ulcers are almost gone.

Yesterday he woke up at 8am and jumped from his bed saying he wanted to go to school for the French class. Unfortunately (but fortunately for his classmates), his teacher did not come. He had a private science lesson at home in the afternoon. Then Yvan visited him.

Today, after another 11h night of sleep, same dynamic wake-up with a great envy to go to school. But this time, matters were more serious as there was a .. bomb alert at the Lycee. Kids spent the 1st hour outside school then Paul called Mum to take him home.

Paul's classmates are now convinced that whenever Paul comes, school is somehow compromised. So his friend Ediz kneeled in front of him saying Paul is a god who should show up everyday at school... Tonight Alexandre visited Paul to undertake an advanced Wii battle and stay for dinner.

Chemo will resume on Monday but for now Paul doesn't want to hear about it.

Another day away from the hospital

Paul's blood tests were not good enough for a resumption of chemo today. He'll have another go at it on Friday.

He went to school for one hour and his school friends gave him a hero's welcome. He obviously came back in excellent spirits but was a bit tired due to a short night yesterday. As usual, later in the day, the reliable Ediz, truly Hermès of the class, brought him his schoolwork. We cannot stress enough how helpful, caring, loving, Paul's extended environment is proving day after day.

Also, his dad and especially his "Swiss" grandmother arrived today. The house is filling up and Paul loves every bit of it.



One more thing: Paul had an excellent grade on his French exam taken in bed a few days ago.

Paul enjoying his time away from hospital

Paul was in much better shape today after an 11-hour night and with ulcers diminishing.

He had a French lesson in the morning then a good lunch eating slowly but almost normally. Christiane stayed with him during the day.

In the afternoon, he had a visit from his school friend Hadrien and they had a great laugh at the Wii, along with Clara who joined them. They also roasted some marshmallows on the ethanol fireplace. Hadrien stayed for dinner which ended in a creme Chantilly battle.

Blood tests tomorrow morning and some chances of catching up with the chemo in the afternoon.

Cycle 2 of chemo delayed

Meeting this morning with the oncologist: After examining Paul's ulcers, she decided to postpone the 2nd chemo cycle till Wednesday or next Monday. Paul was thrilled to return home and felt better instantly.

His ulcers are diminishing and he was able to eat a bit more today. His friend Alexandre visited him in the afternoon.

In the evening, he sounded distinctly better over the phone (dad's comment).

Saturday night fever: a night at Chelsea Westminster

Yesterday, after the ping-pong afternoon, Paul had a fever of 38.5 at 10pm and we rushed him at Chelsea Westminster Hospital. Upon arrival, his fever fell but we had to stay in hospital for the night and most of today. Paul was mostly unwell as his ulcers peaked in his mouth, throat and lips.

As Paul found it difficult to even drink (forget food), he had to be hydrated by serum. He couldn't even smile, that is until a 2m tall, blond, blue-eyed swedish consultant appeared.

Luckily, his fever was mostly gone by then, so we managed to get away with no intravenous antibiotics. Jean-Paul, Anne-Marie and Christiane were also helping in crushing all kinds of food and trying to convince him to eat. Finally, he had an ice-cream, some stuffed cabbage, a banana with chocolate, some honey ... Not too bad after all.

We got out of hospital at 5pm today.

A Surprise from Paul's tennis teachers

Paul received a huge tennis ball from his teachers Matt and Lee, signed by all Harbour's coaches.

The start of the day was difficult with Paul suffering from mouth and throat ulcers, which are typical after Methotrexate. He couldn't eat much, nor smile or talk. The pain killers provided by the hospital were not too effective. Later Anne-Marie found the trick with an anaesthetic spray (great to have a sister who's a doc). We had lunch at the Habibs' with all the cousins.

Paul's tennis teachers Matt and Lee came in the afternoon and played ping-pong with him. Paul is better tonight and the peak in ulcers seems behind us.

Out to Cinema

Paul is enjoying his time out of hospital and went to the cinema with his aunts, Christiane and Anne-Marie. Earlier, Paul had his maths class which ended up in.. a Wii contest. Mr. Dreyfus won and suggested that Paul play with other teachers so as to compare their various abilities.

Paul should be up-to-date with school work so far on the main topics. He doesn't feel nauseous but won't talk nor laugh much because of his mouth ulcers.


...Tonight's team

1st chemo cycle finished

We did not write much since last Sunday as Philippe went back to Beirut after spending a night and a morning internet-free with Paul while Mum was on a biz trip in freezing Casablanca. Paul was taken care of by his aunt Corinne, Esther, as well as Téta and Jeddo as usual. Here is Esther's report from her afternoon with him on Tuesday:

"Paul was on good form this afternoon - although quite nauseous and I didn't do too well on the food front - he didn't fancy the crispy duck, but he did have the chocolate milkshake, some quavers and quite a lot of popcorn ... not the most nutrious diet, but better than nothing. He did well swallowing all his tablets and had a bath with Anne-Marie just before she left. Then we played connect 4, cards and battleships - plus watched his neighbour's playstation game. He was laughing and joking (in between holding onto his sick bowl which he never actually needed ...) and I left him in the capable hands of Jean-Paul. I meant to take a photo on my phone but I forgot - next time."

Today Paul graduated from his 1st series of chemo: 1 week of Cisplatin and Doxorubicin, 2 weeks of rest at home, then 2 weeks of Methotrexate. When he has chemo, he goes to hospital from Sunday pm or Monday am to Thursday pm. Today, upon leaving the hospital, he insisted on visiting Mum's office. He is really doing quite well. Fingers crossed.

Methotrexate has given him a slight sore mouth and throat (with ulcers), but he's still eating relatively well and a daily in-hospital popcorn binge tends to make up for missed calories.

We finally decided to confirm the surgery in Stanmore in early March. A prosthesis indeed seems the safer option.

Paul felt much better since Saturday mid-day. After having lunch at his aunt's (lasagne with ketchup in lieu of tomato sauce: No comment), he had more visits in the afternoon: Oumaya and Maan, then Kara and her daughters, Isabella and Sofia, carrying a box full of excellent cakes.

On Sunday am, his teacher brought him a French exam which he finished in bed. Then Jeddo and téta came before lunch with Téta intending to prepare the Molokhieh (an infusion of a spinach-like herb from Egypt with rice, chicken and meat). But Paul decided he really preferred crispy duck from the nearby Chinese restaurant and Téta didn't really appreciate. But Paul's taste is changing (this is expected due to chemo) and given his propensity for nausea, we don't argue with what he feels like eating.

Then we went for a walk in the park. For those who don't know why Paul is on crutches (and a world champion at that), it is because his bad leg must not bear weight and he must be very careful not to hurt it.

Later, his classmate Lily Lou came and Francis and his family joined a bit later hands full with ice cream and everybody played at the Wii. Bad news: Francis defeated Paul at tennis.

Last but not least, Michel visited a couple of hours before rushing to the airport, bringing with him salmon and Marabou milk chocolate from his latest trip to Sweden. The best salmon and the best milk chocolate for those who don't know.

At 8pm, we went back to the hospital for Week 3 of chemo. Paul should be out on Thursday. Tonight his aunt Corinne is sleeping with him. At the hospital he immediately went to floor 12 (adolescent ward) in order to play a game of snooker.

Tomorrow: meeting on surgery in Stanmore. Again, surgery is where many questions remain ...

A drawing from Mika!

Paul received today a drawing by Mika (thanks to Rosemary who is related to his mother). 5mns later, Clara, very conscious of this rare opportunity, had already written a thank you letter to Mika.

Paul was nauseous yesterday and this morning at home. As soon as he felt better (after the surprise from Mika), he insisted to get out and had lunch at Anne-Marie's with his cousins, even though Philippe had just arrived from Beirut.

Back home tonight

Dominique slept 3h only .. and refused to be photographed (sorry I know I promised).

Paul was still tired with no appetite today. It did not discourage him from playing at the Wii with John who also has an osteosarcoma in the knee and is 2 weeks ahead in the treatment.

At 5pm the Methotrexate (MTX) level finally came down in Paul's blood (after 3 days of hydration + folinic acid vs 4h only of MTX injection on Monday) and he was finally discharged.

At home we had a surprise visit from Zeina and Jimmy who brought nice gifts and delicious cakes. Not less importantly, Clara managed to get hold of Jimmy for 10mns to help her finish her homework instead of mobilizing mum.

Finally, tonight, Paul had a good dinner.




View of the ward at sleep

Meanwhile in Beirut

A photo of some of Paul's supporters (including Voyou, the neighbours'dog who is with us for a few days)...

Go Paul go!! (Waf ... Meowwww)

Getting organized

Paul was a bit tired and had little appetite yesterday and today. But life goes on and he got his first private lesson in hospital with Madame de Beaufort who teaches History, Geography and French at the Lycée. He then took a two-hour nap and rose in time for a pottery class at the day school of the hospital, along with his friends in the cancer ward. He will be back home tomorrow, as soon as his MTX level goes below the minimum threshold.

He is attended to daily by Jeddo, Téta and at least one member of the Nassif sorority. Today Dominique volunteered to spend the night with him. Can't wait to take a photo of her as soon as she gets up tomorrow morning.

Back to hospital

Paul and Mum went back to hospital on Sunday evening to prepare for the Methotrexate injection which was done Monday.

We must mention a morning visit from a masseuse who gave Paul some truly excellent time. Paul then went to play some Wii with his bed neighbour who not so sadly was preparing to leave on the same day, disease-free after three years of treatment against leukaemia.

Later in the day another member of the dream team pushed Paul to attend school (yes, they have a school room) for some maths and English. Paul is well. He will remain in hospital until Thursday.

At the Wii

Around noon: With Dominique (!)



Late afternoon: With Alexandre. Can you spot the difference?

Back from NY

Mireille and Philippe arrived from NY this morning. Dr.Meyers and Dr.Morris (Memorial Sloan Kettering Cancer Center, NY) are confident Paul will be fine. We also have new answers on chemo and new questions on surgery. We'll soon be discussing them with the British team.

On MTP: not available right now except on a compassionate basis for relapsing patients. Likely to be available in Europe sooner than in the US. Fingers crossed.

Paul has a light cold but is otherwise fine despite being neutropenic (white cells low). As his hair is now ready to fall, the hairdresser will be coming tomorrow for a preemptive strike.

Tomorrow evening, if his blood count is acceptably high, we should check-in at hospital for four days as he will be starting methotrexate.

His aunt Dominique and Jean-Paul arrived from Beirut with lots of goodies. Home was full today and when Dominique left in late afternoon, he asked her back for dinner.

Joséphine is actively learning industrial cooking but there is now an increasingly compelling case for hiring a caterer.

Philippe and Mireille in New York today

We woke up early ... or did we sleep?

Meetings with Dr. Meyers and Dr. Morris this morning.

As soon as we left home in London yesterday, Paul rushed with Anne-Marie to her home to party late with his four cousins in London and slept over. Anne-Marie tells us that he is is doing fine.

We are staying at Mireille's best friend Josy in Manhattan, with her two adorable daughters.

Here is a photo from today's breakfast at the Brogards':

Josy won't tell us where she got her pyjamas from, but that's ok because it's her birthday today.

School, Maths, Food, Wii and Food

Paul went to school for a couple of hours today and his maths professor came for a private tutorship.

Thanks to Téta, Paul's home is quickly turning into a kitchen with living quarters as an afterthought. Excellent Beef Strogonoff and marinated chicken for lunch, shared by his cousins Danielle and Robert.

Wii in the afternoon, a chapter of the "Wonderful Adventures of Nils Holgersson" read by dad (the one about the peasant who questions a medium about the future of his province and who is reassured only when she tells him that peasants will keep prospering), duly followed by a spontaneous nap for both father and son.

Paul still had time to do his maths homework before dinner .

Fish and risotto in the evening. Téta truly is a life-transforming entity.

Tomorrow, Paul's parents are going for a one-day trip to New York for meetings with doctors from Memorial Sloan Kettering, especially Paul Meyers, in order to cover all bases.

While there is almost no uncertainty left both as to the standard chemo protocol and to the type of surgery best for Paul's case (and that it will probably be performed in London), there is a new biological compound, L-MTP-PE (Mifamurtide or Junovan or Mepact) produced by IDM Pharma, currently being reviewed both by the FDA and the European Commission (for possible approval in early 2009), still quite controversial in its efficacy, but which Paul Meyers has been testing and championing for a few years now. We'd like to know whether our Paul would be a candidate for this drug and if so when and how we can get it to him.

Otherwise, Paul's temperature is normal, and his character, stamina and appetite are largely intact.

A warm cosy day in polar London

Paul had his first private lesson at home this morning. He found that he had to concentrate so much (as compared to the classroom) ... that he gave up his plan to go to school in the afternoon. Well, his new Wii may have influenced his decision slightly.

And the Wii is just one of many reasons to feel great at home wih his grand-mother cooking his favourite dishes, his grand-father playing cards with him and his dad around.

Also, his cousin Robert visited him for a few hours around lunch time and Oumayya and Maan this afternoon.

Paul is doing fine.

School today

Important things first. Yesterday we celebrated Epiphany with new Londoners Jeddo and Téta who purchased a mediocre king cake from Valérie (just say NO to Valérie) and Paul won the trinket.



Today he went to school for two hours of maths. Everything went ok. Great supportive staff and friends at school. He was doing his homework when we came to pick him up.


In the afternoon, his friend Alexandre came to play with him at the Wii which Francis brought him as a present.

PS: Sorry for the multiple posts; still clumsy with this thing.

Social weekend

Yesterday we had lunch in a nearby restaurant with his grand-parents and his cousins. In the afternoon, his school friend Lorenzo came, bringing along delicious macarons from Paris.

Today, after a painting session (my tablecloth is dead), he has a piano lesson. Then his school friend Alexandre is coming along.

Tomorrow, hopefully, Paul will be able to go to school for a few hours.. and Mum to work.

Paul loves crowds

And it's a good thing because family and friends will be visiting all the time. Today it was Jeddo and Téta's (Philippe's parents) turn, who brought with them delicious fish kibbi.

Before them, came Ms.Fitzgerald, the Children's Community Nurse from the local hospital. She came mostly to take a blood sample which turned out OK. Things should be less stellar next week.

In the afternoon he went to the cinema with Suzy and Clara. They watched "Yes Man" and seem to have enjoyed it even though they had intended to see another film.

Paul is now extremely confident (and prudent) on his crutches and we are becoming a little less nervous about letting him go up and down the some 60-step stairs, with someone in front of him, lest he loses his equilibrium. Still, when Pat does the driving, he insists on doing the carrying too, lifting confidently Paul's 36 kg from the car to his bed. That's what you call full service.

Photo of the day: Pure bliss

Some photos of Paul's stay at the hospital (first chemo)

Paul is learning snooker

With his two main caregivers

December 28: Jacques, Paul's guitar and piano teacher happily obliged when asked to play guitar acrobatically (and very nicely by the way).

Summary of recent events ...

(Posted by Mireille)

So as almost everyone around us now knows, the reason for Paul's limping off and on for the past few months (he was still playing tennis a few weeks before the diagnosis) was of all things an osteosarcoma which is a very rare form of cancer. This allows Paul to boast that he is one in a million. In Paul's case it is a tumor on the left tibia which was hopefully caught in its early stages. The therapy is planned over the better part of 2009 with a limb-sparing surgery around March.

On his fifth day at home following the first three days of chemo at University College Hospital in London (great doctors, great friendly, professional staff ... if you really absolutely have to have a cancer), Paul is finally back to normal with no nausea.

Yesterday, with a miminal nausea, Paul took us to his favourite Nepalese restaurant whose heating was off while outside temperatures hovered below the zero mark (Suzy and I kept our coats on). We brought along his school friend Yvan who first introduced him to this great place. Then they had a good time playing at home all afternoon.

In the evening, respectful of traditions, he insisted to stay awake until past midnight and that we open a bottle of champagne. I lost my fight against sleep at 10 p.m but he, Suzy and Philippe managed to catch some of London's fireworks from the balcony and on TV (-5 Celsius outside).

So to recap the medical stuff, Paul's treatment started on Christmas eve and will consist of 10 weeks of chemo at University College Hospital, then surgery at Royal National Orthopaedics Hospital in Stanmore to remove the tumor and replace the bone lesion by an extensible prosthesis, then 17 weeks of further chemo. End of treatment is expected around August, 2009.