Jogging in Hyde Park for Paul

Mrs. Delphine Botbol (on the left in the picture above), Paul's science teacher, organized an 8km jogging in Hyde Park for Paul.

Many students from Paul's class who were eager to do something for Paul, as well as Mrs. Botbol's other class students, participated in the run, wearing T-shirts with Paul's name.





A few teachers were also present: Mr. Tagarist (maths), Mr. Cadeddu (physics and chemistry), Mrs. Rotureau (sports), and of course Mrs. de Beaufort (who was going back and forth from the ice cream event that she helped organize with Clara, and Hyde Park to support her fellow joggers).

Paul loved the pictures.



Some did it on a bicycle..


Mr. Tagarist (in yellow short in the picture below) who left last (with Geneviève de Beaufort on his shoulders) arrived second (the first is a student who is very worried to fail his maths year next year...).

Paul is feeling much better this afternoon and his muscular pain is fully controlled.

He had to extend his hospital stay due to fever in neutropenic days post-chemo.

Today Vivien visited and Paul challenged her at Scrabble.

Then he wanted to do some maths exercices (Paul, school is over, remember?).

Corinne and Dominique left. Suzy and JP arrived.

Clara's ice cream sale was a great success !

Clara organized an ice cream sale at Oddono's, near the Lycée, to raise funding for Cancer Research.

Over the last few days, she was busy organizing the event with Mrs. de Beaufort and Mrs. Zbairi, preparing and posting the leaflets across the school, and discussing with Christian, Oddono's kind owner (in blue T-shirt in the picture above).

Many students from the Lycée came, as well as friends of ours, and there were often long queues.

Christian told us sales reached a few thousand pounds!
Christian went to another charity later in the evening; some people knew about Clara's event and contributed further.

Paul enjoyed seeing the pictures this morning and is convinced they will all end up with indigestion... given many kids had a one-off go-ahead from their parents to have up to six gigantic scoops.

Another event for Paul took place also yesterday, which I will write about tomorrow.

Paul had an upset stomach lately but feels better today.

Paul has days in two-stages: lots of sleep in the mornings, then visits in the afternoons.

Yesterday Jacques, his piano and guitar teacher, came and Paul played guitar.

Alexis and Dominique also spent some time with us.

Téta and Jeddo returned to Paris.

Visit from classmates

Yesterday Paul had the visit of his classmates, Lisa, Xenia and Eugenie who offered him a comic book and some swiss chocolates.

They spent almost three hours together: the girls told him about the school news and they all drew and wrote on Eugénie's goodbye book as she is leaving the UK next year.

Stephane also visited and made him a demonstration of a georgian dance, his new hobby. Along with Nathalie, they all surfed on You Tube.

Today we watched Wimbledon and Paul is feeling much better.

Paul, in the picture above, is not with his latest chemo companion (aren't they as bald..?), but with Philippe's cousin, Michel, who visited by surprise from Paris.

Paul is sleeping quite a lot, given a few days of chemo.

In the evenings, he enjoys watching movies. His cousins Robert and Marc downloaded many of them on his computer at UCH.

Paul passes in 4e with congratulations !

Paul had a visit from his school teachers, Mr. Dreyfus (maths) and Mrs. Botbol (science), as well as Mrs. Zbairi (in charge of all the 5e and 4e).

They gave him his grade book which is excellent and he got the "Congratulations!".

A visit from a BBC movie star

Paul is spending the week (probably till monday) at UCH for chemo.

He is starting to regain the lost weight thanks to the NG tube.

Clara came back from Hamburg and spent the day with him.

We had a surprise visit from a BBC movie star, Michelle Ryan (in the picture above), who Paul and Clara know from her "Doctor Who" series.

Earlier Mrs de Beaufort came for an ice cream party as Paul is done with his school lessons and exams. She also gave him two excellent results in his french latest exams.

Xenia and Lisa ran for Paul !

What a surprise in the mail today: Paul received a big enveloppe from his classmates Xenia and Lisa, with a letter (in picture above) saying they ran 5km for him in the Race for Life. They also succeeded in raising 397 pounds from friends for the Cancer Research.

He received many pictures from the race as well as a medal they generously offered to Paul.

Xenia is a regular jogger but it was the first time for Lisa who ran non-stop.

Paul is now at UCH and chemo continues.

He had a french lesson today and Mr. Tagarist made him a surprise visit.

Dominique and Philippe arrived from Beirut.

Still at Stanmore

Paul is still at Stanmore as his leg is painful and he needs regular morphine to control it.

So, in between his foot microfracture (slow to heal under chemo), his new wound from the lymph node surgery, his thigh pain (from inflammation?) and the prosthesis that is slightly stiff (as not mobilized), his left leg is not moving much, which in turn, worsens the pain.

He is in bed all day long (for a few weeks now) as he is very lethargic after six months of intensive chemotherapy and five weeks of continuous antibiotics (given low immunity and low grade fever).

We forced him today to do two sessions of physio exercices to build up the body muscles.

He is fed by the NG tube and is gradually reaching the daily minimum requirement.
We have stopped the weight loss (-4kg ie -10% of his initial weight).
He will slowly gain weight as we increase the feeding debit and he eats normal food (still almost nothing).

In between the nurses and doctors ongoing visits, reading, playing on the computer, watching a movie, days do go by...

Suzy left today to Dubai. Corinne arrived from Hamburg.

And Clara is having a great time with Sylvain, a talented tennis coach, and her cousins Léana and Alexandra.

Paul is fine. His post-op pain is controled with oral morphine.

He is starting to eat normal food (in addition to the NG tube).

On the same day of surgery, he insisted to watch a movie with Anne-Marie till midnight.

The good news is the liquid aspirated from the knee area is free of infection.

Suzy, his step-mother, arrived yesterday from Abu Dhabi and Paul is happy she is spending two full days and nights with him.

Paul might be discharged today from Stanmore.

Clara left yesterday to her cousins in Hamburg for a whole week (as it is the Baccalaureat week in her school).

At Stanmore

We got transferred yesterday late afternoon in an ambulance from Chelsea & Westminster hospital to Stanmore hospital.

The surgeon, Mr.Skinner, reassured us upon arrival as he believes the titanium prosthesis is not infected (if it is, the prosthesis has to be removed to resume chemo with no more delays).

Paul is fine with no temperature, but the swollen lymph node at the groin and the thigh are painful although controlled with pain killers. He is very patient, played a game on my blackberry (he is working on challenging Jimmy who's beaten records..), played online on computer games, read.. then fell asleep from so much work.

Later he had an ultrasound of the upper body and leg which did not reveal any visible infection.

He was operated on at 4:30pm, the groin lymph node was removed and some liquid around the knee was aspirated.

One hour later, Mr. Skinner appeared in my bedroom to reassure me: Paul is fine and the lymph node was easy to remove and looked like an ordinary lymph node (biopsy results in the next few days).

His post-surgery pain is controlled with morphine.

Anne-Marie, my nephrologist sister, is taking over for the night. Paul is in good hands.

From C&W to Stanmore Hospital

Paul is getting a little used to his NG feeding tube but was still hoping he would encounter a good soul today to remove it for him.

His morale post-tube only improved when Mrs de Beaufort visited (for a graded dictation though).

Then the psychologist Anne-marie (in the picture above) had a chat with him.

Paul has no fever but his leg and lymph nodes are hurting despite pain killers. His white blood counts dropped again.

His oncologist and his surgeon, organized to have him transferred today from Chelsea & Westminster Hospital to Stanmore Hospital (where Paul had his surgery) to investigate the potential cause of the swelling of his lymph nodes.

Chemo will be postponed until this is assessed and managed in Stanmore.

Back to Chelsea Westminster Hospital

Last minute change of program this morning: As we were ready to go to see Mr.Skinner, Paul had a 39 degree fever at 8am, so instead we rushed to Chelsea Westminster.

There we were served with the usual cocktail of wide range antibiotics. Given both his swollen lymph node at the groin (indicating an inflammation or infection) and the prosthesis (which love bacteria), we have no choice but to be very aggressive with antibiotics.

The good news of the day is that his bone marrow is back in action, with platelets and white blood counts back up to decent levels.

Paul was in such a good mood this morning that he did a science exam in hospital.

The doctor discovered a second lymph node behind his affected knee (popliteal) and he sent him to do an ultrasound.

Paul was very cooperative with the nurse who put him the nasal gastric tube in, and the experience turned out smooth and quick. But he quickly hated the feeling of it and asked to have it removed. The medical staff convinced him he would get used to it after a day or so (like for the picc line).

Paul will have his first food intake through the tube overnight.

A long day for both of us.

Meanwhile at home, Robert was kind enough to visit Clara and help her out in reviewing her maths for her exam tomorrow.

This pesky lymph node again ...

Paul has been suffering from a strong pain at his swollen lymph node and leg over the weekend.

Pain killers are helping but we're looking forward to see his surgeon, Mr.Skinner, tomorrow morning.

Mr.Skinner will likely remove the lymph node on Tuesday in Stanmore, assuming blood counts are back up.

Chemo is again delayed (Wednesday?), the lymph node winning in terms of priorities.

Yesterday Paul spent the afternoon at his cousins' and played at the Xbox, guided by Marc who is also reviewing for his Baccalaureat exams. But Marc is a brilliant multitasker so ...

Today we watched the Roland Garros final with Domenico, Stefania, Bianca and Federica, while Paul preferred to stay in bed.

He is tired and sleeping often. He has now been under antibiotics for about a month (mandatory as he had several bouts of low grade fever in times of low immunity).

He is making good efforts to swallow some proteins in order to avoid spending additional nights at hospital just for food intake (through the nasal gastric tube due as soon as we return to UCH for chemo) but he feels full very quickly.

A busy week next week.

Federer and Red Meat

We went to UCH yesterday in order to have the nasal gastric tube put in. But as they asked us to sleep over in order for me to learn how to operate the pump, Paul preferred to postpone it till next Monday when we'll have to stay anyway for chemo. We do our best to minimize hospital sleepovers since we're there most of the time these days.

So focus back on eating yesterday and today. I still don't believe I just managed to make Paul swallow 250g of filet while watching Federer win a great semi-final. Thank you Federer and no the title of this post was not meant to suggest that he made minced meat of Del Potro which he did anyway in the end: Some filet!

Paul had a maths tutorship today and another very good grade on his maths exam.

Despite being very tired, he remains interested in his school work.

Paul's lymph node located at the groin of his affected leg was again painful over the last two days. Despite being under antibiotics for about three weeks, the lymph node is not going away, which made Maria decide to have it removed as soon as Paul's blood counts permit (still low). Mr.Skinner will do the procedure so we'll be returning to Stanmore soon.

Otherwise Téta and Jeddo are spending the days with Paul while I am at work. Isabelle was also of great help for a few days.

Clara is doing very well.

Chemo delayed

Paul's white blood cells and platelets remain too low to resume chemo.

We saw Maria today at UCH who postponed it until next Monday... and Paul happily organized his afternoon at his cousins' and reappeared late this evening to say he's sleeping there.

This time, his blood marrow got very depressed by chemo but this is normal as we're heading towards end of treatment. Only 10 weeks to go (assuming no more delays)!

The lost weight didn't escape to Maria.. and the nasal tube is planned for tomorrow. Paul is not unhappy about it as he will feel stronger and, most importantly, he won't have to take the unpleasant phosphate tablets anymore.

Yesterday we also saw his surgeon, Mr. Skinner, who told him to remove the splint, and gave him instead an air-cushioned boot, the one David Beckham was wearing if you happen to be a football (soccer) fan.

Both doctors expect quick improvement right after chemo is over. Paul is now very tired from an accumulation of five months of high dose poison in his body. In addition, his bones are weak and his foot is micro-fractured. So conditions are not present to improve his walking now.

Paul is home!

Finally Paul got discharged from Chelsea and Westminster Hospital after a night with Marc.

I thought they were going to sleep when I left them at 10:30 yesterday evening but they had other plans. In the morning, an Ali G. DVD left on the tray was testimony that they had decided they could not go to bed without a few laughs.

Today was mostly a day for resting at home with Clara and the visits of Téta, Jeddo, Isabelle and Michel.

Tonight we saw the crowning of Diversity on Britain's Got Talent and both Paul and Clara were disappointed that, respectively, neither Susan Boyle nor Shaheen Jafargholi won the contest.

Otherwise paul is fine, in good spirits and eating quite well.

Unless there are changes, no update before Tuesday when and if he is admitted for chemo.

Back home ... for four hours

Dr. Elsawi from Chelsea and Westminster Hospital didn't fail us!

After a platelets transfusion (for the road), once more she allowed Paul to go home for four short hours before coming back at 10pm for IV antibiotics, a G-CSF injection and another night under the watch of the excellent team there.

Today was marked by acceptable food intake, the visit of Rosemary for a few hours between her arrival from Brussels and her departure to New York, the arrival of Téta, Jeddo and Isabelle, a maths class and some very physical physio with Laura:



At home finally he sped to his bathtub like a seal to the sea:

Old boys club

(Paul, Robert, Philippe)

Paul spent last night with his cousin Robert who stayed with us until mid afternoon. This morning, I first brought breakfast to the pair (at 10am they were still sleeping), then I ran an errand at the Lycée before coming back one hour later. They were eating the stuff I had brought them earlier and watching a very funny movie, despite this review. Well it was funny in French anyway.

The day's efforts were spent on trying to make him eat and Robert showed some real gifts in this respect:



We managed to make Paul eat quite a bit by nibbling basically all day long.

On the medical front, no fever, counts still nil to very low. Paul is still under antibiotics. Tomorrow's blood results could show some serious improvement and he may be discharged.

More bothersome is his micro fracture on the left foot which may have worsened in an accident yesterday. We still await the results of an X-ray Paul took this afternoon.

Update: The X-ray seems to show a fracture (perhaps not so micro anymore) on the exterior of the foot. If this is confirmed, this will make physio less optimal as there is probably no real way to heal this fracture before end of treatment.

Back to Chelsea Westminster Hospital

Paul had a low fever today, and given his neutrophils are still at zero, we're back at Chelsea Westminster hospital for I.V. antibiotics.

He will be there for at least two nights to check there is no bacterial infection.

Paul remains in relatively good spirits despite the fact he now finds all this too long.

His ulcers improved but he has still little appetite and feels full quickly.

Philippe arrived today from Beirut for a few days.

Paul asked Robert to repeat the night experience with him. I believe they watch movies quite late, for the part that is officially reported to us.

A small incident today: as the very helpful Pat was carrying Paul down the stairs, he slipped and Paul hit his bad foot (already micro-fractured) on the wall. He is complaining it hurts and we might do another Xray tomorrow if the pain pesists. An additional delay for walking..

Back home

Paul is back home tonight.

He in such a good mood ..that he accepted to do a maths exam.

He made an effort today to eat more.. which ended up in moderate vomiting. But all in, he was better off eating than not.

Out of desperation earlier in the day, I called our friend Nabil, a famous cook in his out of office hours, for urgent help in preparing tasteful soups for Paul.

We keep trying ...

Down inside out

Rosemary spent a second night with Paul.

Zeina and Jimmy visited monday morning.

Blood counts were not improved: neutrophils (white blood cells) are at 0.0 and platelets remain very low. Sunday's platelets transfusion was a top-up for one day only as only the bone marrow can provide some continuity.

Neutrophils slightly improved to 0.1 today, as he is at day 9 (out of 10) of his G-CSF injections which should help trigger the bone marrow.

Paul was quite unhappy yesterday and the doctor allowed him to spend the afternoon at home given he is under antibiotics and with no fever.

Hadrien visited him at hospital and accompanied him at home to play on the Wii.

Rosemary and John (who took Clara out all of sunday's afternoon) held us company and stayed for dinner.

But the most difficult task is to make Paul eat. He continues to loose weight. He can't swallow due to his mouth sores and he is full just after a few spoons of liquid foods.

Anne-Marie and Alexis took him back to the hospital in the evening where he spent the night with his cousin Robert.

Today Tuesday, he'll have another platelets transfusion and will go home in the afternoon (to stay there).

Blood counts nil

Paul is at Chelsea Westminster Hospital since Friday evening, due to a low grade fever.

Given he has no immunity (neutrophils are again at 0.0), we have to be prudent and cover him with various antibiotics.
On the positive side, he has no fever.

All blood counts drop post-chemo: hemoglobin and platelets are also very low and both a blood and platelets transfusion are on the program for today.

Persisting mouth ulcers and loss appetite made him loose further weight. We're trying all day long to find new recipes as he only tolerates liquids.

Rosemary and John spent the afternoon with Paul, and I'll let Rosemary write the subsequent events (she kindly did the night too).

"We had a delightful evening with Paul playing Hotel (an upgraded version of Monopoly). Of course, Paul trounced us both, building large luxurious properties and charging exorbitant rents.



Paul managed to down a few nacho chips (largely by sucking them) and we all enjoyed a "fizzy strawberry lance" for dessert. Paul took good care of me throughout the night ensuring that the nurses provided me a toothbrush and a blanket. He has certainly charmed the entire hospital staff - they all seem to enjoy coming in and sharing a laugh or a story with Paul while they do what they need to do."