Saturday, May 30, 2009

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.

Friday, May 29, 2009

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:

Thursday, May 28, 2009

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.

Wednesday, May 27, 2009

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..

Tuesday, May 26, 2009

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 ...

Monday, May 25, 2009

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).





Sunday, May 24, 2009

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."

Saturday, May 23, 2009

At Chelsea and Westminster Hospital


Yesterday Leana and Alexandra returned to Hamburg.

Rosemary and John arrived from New York and Boston for a few days in London. They are Philippe's American cousins and Clara and Paul's true (and infinitely patient) friends too, having shown repeatedly an admirable disposition for spending days with them at the water park or hours around a game of Monopoly.

Paul had his platelets transfusion yesterday afternoon and was both excited to see Rosemary and John in the evening and quite tired too.

Alice also visited from Beirut and joined for dinner.

At around 23h, Paul had a 38.4 deg. fever and it was time to rush him to his other home in neutropenic times.

Below a few photos from the great time Clara and Paul always had with the Moukads.

Hard to believe that in July 2008, Paul was probably already ill.







Thursday, May 21, 2009


Paul is less nauseous but still has no appetite due to mouth sores. Obviously this is otherwise a normal effect of chemotherapy.

He has been eating very little for a full week now and has consequently lost a precious kilo. The threat of the nourishing tube is of no help. But Téta is coming next week so we hope she'll give him new tasty incentives to go back to eating more respectable quantities.

Over the last three days, he had some good moments and laughs with his cousins Leana and Alexandra.

Dominique has taken good care of all of them, including lunches outside (provided the brave Pat would carry Paul up and down the 35 stairs).

Today Paul had a physics and science tutorships.

Laura gave him a physio session. Paul is still putting little weight on his foot due to the micro-fracture which is likely to heal very slowly as long as he is under chemo. Paul can now bend his leg almost as much as the good leg (picture below).

Tuesday, May 19, 2009

Monday, May 18, 2009

Paul went to UCH for a bone scan today. Results probably towards the end of the week.

He is excited by the presence of his cousins Leana and Alexandra (while Clara wonders why she still needs to go to school and miss the party at home).

Paul is less nauseous today but he is still eating precious little.

As he spent enough time at University College hospital today, we took the liberty not to go to Chelsea Westminster hospital for the G-CSF injection that boosts the bone marrow (to offset the white blood count drop post-chemo). Instead, Anne-Marie gave it to him at home. A big luxury to have a doc in the family!

Dominique arrived today for the week.

The Wii guitar Wajdi brought to Paul made (almost) everybody happy.



Sunday, May 17, 2009




Paul rested at home today with a continuous but lower nausea.

We went to Chelsea Westminster Hospital for a quick antibiotic shot through the picc line.

Paul, Clara and Jean-Paul prepared crepes.

Newly wed Roula and Olivier visited.

Leana and Alexandra arrived from Hamburg for a week of vacation.



Paul had two long and restful nights at home.

He was still very nauseous yesterday with no way to make him eat until late in the day.

We went to Chelsea Westminster hospital for a short visit as Paul had to get the I.V. antibiotic through the Picc line (during the week days, the community nurse does it at home).

Paul felt better in the evening as the Cisplatin effect is reducing (it takes about four days) and as he is taking anti-nausea medications.

Max and Paul Berstein spent the evening with Paul and Clara.

Friday, May 15, 2009

Back home after five days and four nights in hospital

Paul is back home tonight.

He is happy to be done with one of the three drugs, the Cisplatin, which is the one giving the strongest nausea. The rest of the treatment till August will consist of Doxorubicin and Methotrexate.

Because of nausea, he ate next to nothing over the last two days.

Cisplatin made him also lethargic so he went straight to bed upon arrival.

Anne-Marie spent all of today with him.

Yesterday we had a fun episode when Anne-Marie arrived for the night shift and summoned the nurse to give some extra nausea medication to Paul to relieve him. As more than one hour was not enough for the nurse to get hold of the doctors to approve it, Anne-Marie (a very active nephrologist for those who don't know her) tried herself to bleep the doctor on call from the nurse desk. The nurse threatened to call Security to have her expelled from the hospital. Paul found that very entertaining. The ladies finally reached a consensus late in the evening as Paul finally got the extra medication.

Amid the excellent care Paul has generally been getting, we can't help but notice the general under-staffing of the ward, either because hospital management recognized beforehand that kids would anyway never be left alone by their parents or because parents are just present, making extra staff redundant.

But sometimes parents may have things to do and in this case, patients can be left alone for some time, often quite sick and in dire need of help. One Saturday three weeks ago (one notoriously understaffed day as patients somehow always seem to get better for the weekend), Jon's mother had to go on an errand and Jon was not feeling great. Mabel, the otherwise excellent nurse, was busy elsewhere and it is basically us, with Philippe, Corinne and Clara who took care of him as best we could.

So at least Paul is at home for the weekend. This is good for Clara too as she has been too often left to her own devices since the beginning of Paul's treatment. She is doing well at school, she appears to be doing fine generally but it is important for her and for everybody that we get back to some normalcy from time to time, around the dinner table, in front of the TV screen and the Wii, in the morning when Paul is in a playful mood ...

Have a nice weekend!

Thursday, May 14, 2009


Paul had many visitors today while I was at work: A friend with whom he enjoyed building a Lego motorcycle, Rima who stayed for a few hours, then Imad.

Mrs de Beaufort gave him a french lesson.

He went to the playroom and played with Tom.

He is still under antibiotics and the swollen lymph node at the groin has consequently shrunk and is hurting less.

In the afternoon, he had a strong nausea and a headache. Cisplatin is the chemo drug that is the nastiest in terms of nausea. We can't believe it's the last time he takes it (no more in next two cycles).

Paul hasn't eaten much over the whole day.

He finally had a nap in late afternoon after a take of painkiller and anti-nausea medications.

Then Vlad visited. He showed him his own scar and told him about the titanium in his arm.

Anne-Marie is doing the night.

Paul will be discharged tomorrow...for a two-week luxurious rest at home (hopefully).

Wednesday, May 13, 2009


Paul is less nauseous than usually with Cisplatin and Doxorubycin and is eating relatively well.

He is still on antibiotics to deal with the inflated lymph node at the top of the affected leg.

He tries to do his physio but it's difficult due both to the foot micro-fracture and the lymph node.

Maminou left this morning.

Nadine replaced me for most of the day so I could go to work.

In the evening, Paul had successive Skype discussions with Philippe, Suzy and Maminou.

Then he did some homework and slept early.

Tuesday, May 12, 2009

Chemo Cycle 4 started

Paul was admitted to hospital yesterday to start chemo cycle 4 (out of 6).

On Sunday evening, he felt an inflated ganglion in the upper part of his left leg, so he started antibiotics yesterday (with the titanium prosthesis, we have to be very cautious when we suspect an infection as bacterias go first to the metal where they stick). Needless to say physio is now more difficult.

We slept very well at hospital given we had a private room (due to infection).

After ten hours of deserved sleep, Paul was well this morning.

He did his homework, went to the playroom, then had a private tutorship with Mrs. de Beaufort.

We met the nutritionist to advise us on how to catch up with the slight 5% weight loss given continuous slight nausea. She suggested a list of meals that anyone would dream of (Paul first), in terms of high calories.

Paul had a long nap in the afternoon.

Maminou spent most of the day with him and is doing the night shift.

Sunday, May 10, 2009

Paul is well and was in no need for any pain killer nor anti-sickness medication for the whole weekend.

He studied this morning, then put the last touches on the Hansel and Graetel house with Maminou and Clara.


Laura, the physio, made Paul bear weight on his leg today without splint support at the knee level. The splint is normally set to prevent the knee from bending when Paul is walking. As the quadriceps is weak, the knee may not have withheld the pressure and Paul was in danger of falling. This is a real improvement!

Philippe left midday to Beirut and we went out for lunch. Esther joined us there.

Paul had a good appetite despite persisting but diminishing ulcers.

In the afternoon, Mrs de Beaufort and her family came to see the famous Hansel and Graetel house.


Then we all tried the newly acquired Wii-fit (we all failed miserably in skiing).


Afterwards Paul and Clara had a piano lesson.

Saturday, May 9, 2009

Sweet feelings of a normal day

Paul was very well today (despite persisting mouth ulcers).

He worked on Hansel and Greatel's house with Maminou in the morning, after doing his physio with her (Suzy had left very precise instructions..).




He lunched at the Habibs' and enjoyed watching a video taken when he was in his "paradise" in Grasse last year, boating and waterskiing; this should be our first trip after chemo, just before the start of the schoolyear.

In the afternoon, we all went to the Harbour club to watch Clara take part in a tennis tournament.


Paul was happy to see his tennis teachers and his friends.

He asked to have dinner there.

Friday, May 8, 2009

Paul had his ritual breakfast with Suzy today before she left for Dubai.

The community nurse Anna came home to take a blood sample and Paul enjoyed doing it himself.



Philippe arrived from Beirut for the weekend and he took Paul out to eat a hot dog at South Kensington which Paul declared almost as good as in New York and then an ice cream at Odono's.

Paul and Maminou started the house of Hansel and Graetel by cooking the dough (it's a four-day program).

Laura the physio trained Paul for one hour. She declared that things are improving, slowly but surely. His foot is still hurting (due to the micro-fracture), so he still can't bear weight on it.

Suzy left him a reminder note (picture below) of all the things Paul needs to do several times a day.

Thursday, May 7, 2009

It's Christmas all over again ...



Angela, Suzy's mother, arrived this morning and will stay with us till Wednesday.

Paul and Clara are very excited as they will build an off-season Hansel and Graetel house with Angela ("Maminou" for her grand children).

Paul is better today with ulcers diminishing and a more peaceful stomach.

He had a french tutorship with Mrs de Beaufort then lunch in a restaurant with Maminou and Suzy.

Esther visited in the afternoon then Alexandre stayed for dinner.

The house is full and that's great.

Below a picture of Paul with his new splint which he doesn't need to remove in order to bend his knee.