Paul is better today: he is less nauseous and has a good appetite. However Methotroxate is giving him very loose stools and he has been quite uncomfortable in this respect.

He had a painting session in his room as he is isolated due to his upset stomach, just in case it is something else (which it isn't) but they can't take any chance on the ward.

Suzy and Paul also listened to music. Paul is discovering Edith Piaf (a small let down after this which Paul sings not too bad at all but at least he had a lot of fun).

Jenny, the new physio, trained him to muscle his weak left quadriceps. It is a prerequisite for walking with no splint, otherwise the knee will not hold the weight and he could easily fall.

Paul also did his maths exercises.

Another busy day at UCH

Paul and I emerged at 9am, enjoying our temporary private room. These rooms are normally reserved for patients with infections and who need to be isolated.

Big news today: Paul walked, with his crutches of course, bearing weight on his left foot, from his room to the playroom. This is quite a distance that feels like 50 meters or so to me.

Suzy took over by midday. She will be with Paul for the next three nights.

Paul had a busy day: A French lesson with Mme de Beaufort (even more fruitful in a closed environment), two visits to the playroom, and a visit to the day school with painting exercises on the computer.

The 4-hour high dose Methotrexate infusion went almost unnoticed.

Paul got a new splint which will help him be more mobile as it will allow him to bend his knee without having to remove it first.

Otherwise he has been quite nauseous and he didn't eat with a lot of appetite during the past two days.

On a personal note, in the take-everything-positively chapter, I have been bombed on the head by a feathered flying machine of the type nurtured by Philippe in Beirut. I am told this is good omen ... from the behind of a bird unfortunately not rare enough to be of any omen but I tend to welcome all potential omens as good these days, in all shapes, forms and smells.

Last week of Cycle 3 (out of 6)

Paul had his foot MRI scan this morning (results in a couple of days I guess).

Late afternoon, we headed to UCH for the second week of high dose Methotrexate and the last week of cycle 3 (out of 6 cycles ending early August).

I'm trying to encourage Paul by convincing him he is approaching the end of his treatment, as when counting from December 24 when chemo started, we're already at 60% of treatment duration.

We were happily surprised to be given a private room this time (which is really the only way to have some sleep).

We had a fun evening with Joe listening to music.

Paul is well.

Paul made a short attempt at school today but had to come back home to rest.

After a nap and light lunch, we had an appointment with Mr. Skinner, the surgeon, who was very pleased with the wound's healing, as well as the leg Xray. He removed the bandage completely and suggested Paul should start the physio exercises in a swimming pool to get used to walking on the leg.

This could seem minor but it is really a significant detail in his daily life: he can now spend a long time in the bath as his wound is fully healed.

Paul will have a foot MRI scan tomorrow to make sure all is fine as he's been complaining about not being able to bear weight. Until today that is as he told Philippe. When Philippe reacted "but this is a miracle", he answered "oh we've been so unlucky that it's ok to have a miracle once in a while."

Suzy arrived from Beirut for a two-week stay with us.

Barbecue in the square

Paul had a good night of sleep and is doing mostly very well save for the occasional sickness and his ankle which insists on hurting when he puts some weight on it.

He did a maths exam in the morning, then Corinne left in early afternoon.

Around 3pm, as the weather was quite warm, we went for a walk as Philippe was rushing to catch his train and we started by having an ice cream.

Then we joined Francis, Rima, Yasmine and Rayan in their square garden where we improvised a barbecue ... on a disposable barbecue. I didn't know these things existed.

Mr. de Beaufort came early in the evening bearing a gift from his wife in the form of an exam which Paul took immediately.

Once done, both ended up at the Wii.

Back home

Paul is well and returned home yesterday afternoon.

Philippe arrived from Beirut.

Yesterday was a long day at UCH waiting for the Methotrexate to clear from his body.

Both Paul and Jon were moved overnight to the upper adolescent floor (not enough patients in the children ward).

The advantage is the large playroom with the pool, the electronic piano, the playstation and the large TV screens, where we all got distracted.

Paul wanted to go out for dinner. We went to the nearby steakhouse but he was unable to finish his hamburger.

Corinne is returning to Hamburg today.

One birth in Beirut. One to go.

Corinne spent the whole day with Paul in hospital.

And it was a long one as it started very early: The newcomer's father from Bangladesh did his 5am prayer 2 meters away from Paul's bed, a bit noisily, but hopefully his prayers will have been heard and everybody around him will benefit (the halo effect). Obviously, there is nothing prayer-like in Philippe's snoring and since it doesn't wait until 5am to wake up everybody, on balance the Bangladeshi father is probably a better deal for the ward.

Corinne made Paul review his history lesson on the Middle Ages in preparation of an upcoming exam this weekend (with Mme de Beaufort whose gentle but demanding style is absolutely ideal for Paul right now). But Paul managed to quickly divert Corinne to the playroom to play a game of Wii Football in which he beat her 13 to zero.

Clara visited Paul then left for her tennis lesson.

There was a party in the ward for Henry's last day of treatment.

In the afternoon, Paul and John went through their common routine: Day school then playroom, then Nintendo DS.

This morning I had a long meeting with Maria, Paul's oncologist. Maria is very pleased with Paul's progress so far.

New picc line and Methotrexate

Paul had his new picc line put in this morning under general anaesthesia. He doesn't seem to dislike the process as much as you'd think as he always loves counting down until vanishing.

Chemo started straight away with a 4h high dose of Methotrexate.

Paul will be discharged on Saturday afternoon as it takes three days to get the Methotrexate out of the body.

He had a long chat with his bed neighbor Jon (in the picture above). Jon had a tumour in the femur, and is two weeks ahead of him in the same seven-month protocol.

They both (along with an 8-year old newcomer with another tumour from the infinitely varied menu of cancers) went to the day school and did some work (?) on the computer. They ended up in the play room.

Clara and Corinne arrived tonight from Hamburg.

Corinne replaced mum for the night in hospital.

On Chemo Eve ...

As planned, Paul was admitted today at UCH to resume chemo cycle 3 (out of 6 in total).

Mrs de Beaufort is back and gave him a French class in hospital.

In the evening, after all checks and blood samples were completed, we went out for a few hours. We had a walk around the hospital and Paul insisted we stop in a pub so I could enjoy a beer with Jean-Paul. Then we had dinner in a restaurant.

Paul will have a new picc line put in early tomorrow under general anaesthesia. Then chemo will be given straight away.

Meanwhile in Hamburg, Clara, Leana and Alexandra were having an egg tapping contest.

Tests Galore

Above is a drawing Paul did yesterday evening.

He is doing very well and spent the day with Jean-Paul doing God knows what but they seem to have had fun together, including a long stroll in the afternoon.

He had a maths tutorship in the morning then he took a physics exam (at home).

He then went to a clinic and took an ear test which turned out fine.

Meanwhile Clara is having a good time in Hamburg.

Two days at home

We had the traditional Saturday lunch at the Habib's yesterday, with a wider fan club: Dominique, Wajdi, Christianne, their children, Zeina and Jimmy.

Paul played with Andrea and Pierre the whole day. Perhaps too much as he woke up in the middle of the night with a headache that lasted until early afternoon today.

We then had a walk (in his wheelchair as he can't bear weight on his left foot yet) and visited the Nardelli's new home.

Then his cousin Kathleen and friend Vanessa visited.

Christianne, Andrea and Pierre left today for Beirut.

His new picc line and chemo are scheduled for Wednesday.

Easters in Beirut

Normally, Paul and Clara would be celebrating Easter in Beirut. In Lebanon, there are really two Easters, officially in the name of equality between the Catholic and Greek Orthodox sects, but in reality in order to have two Good Fridays and two Easter Mondays to rest and celebrate (yes: 4 days off in two weeks).

A pigeon chose this auspicious time to lay two eggs in the planter of our dining room.

Happy Greek Orthodox Easter to all (especially to Michel ... and Esther and Anna and Sophie)!

Here is also some music for Michel (and his godson who loves music too)

Paul rebounds!

Paul is well.

He studied in the morning, did a physics exam, then had a physics tutorship.

Results of the blood sample today: neutrophils jumped to 2!

Thus Paul's isolation ended and he was finally able to play with his cousins Andrea and Pierre (below) from whom he was separated the whole week.

Rest at home

Paul is fine this morning (and yesterday) with no fever. He's resting at home.

We have to be prudent as the neutrophils count is still low and he is therefore isolated (with me) in my bedroom (that was a condition for being discharged from hospital). His cousins Andrea and Pierre can only talk to him from the bedroom door (yesterday's photo was a blatant transgression).

Yesterday he had a physics tutorship with Mr.Cadeddu at home.

We had to make a short visit to Chelsea Westminster Hospital for his last dose of antibiotics through the canular which was removed afterwards (what a relief!).

The physio Laura came in late afternoon for a torture session. It is still difficult for Paul to walk. Again it should take 3 to 6 months before he can walk without crutches.

A surprise in the mail today: Paul's school report with congratulations. Bravo Paul!

Out of hospital !

Paul was impatient to get out of hospital today.

Luckily the blood counts increased, not substantially, but enough for the doctors to feel confident the bone marrow is back on track and thus discharge Paul.

He is still under antibiotics until tomorrow as the low grade fever he had (no more now) could have signalled an infection which would first hit the prosthesis (the metal is the first spot the bacteria goes to).

He had a physio session with Laura.

Dad left to Beirut today.

Home is full with Paul's cousins, Andrea and Pierre, and their mum Christianne.

Clara spent the day with them touring in London, and is again flying to Hamburg tomorrow as she's on vacation next week too.

Have you seen my neutrophils?

Very slight improvement in the neutrophils level today: up to 0.2 from 0.1 yesterday (normal 2.5 to 7.5). Unless it goes up substantially, Paul will remain in hospital. The daily injection of G-CSF should finally kick-off the bone marrow anytime now but he may still need a platelets transfusion.

Next chemo is planned for Monday but all depends upon his blood counts.

Clara is back today from Hamburg and enjoying the presence of her other cousins, Andrea and Pierre. A good surprise: Her grades booklet arrived by mail and was good. Congrats Clara!

Meanwhile Clara in Prague ...

Clara is having a good time with her cousins Léana and Alexandra visiting Prague with the tour guides Corinne and Sylvain. She'll be back tomorrow evening.

Paul has no fever since yesterday but has to remain in hospital, isolated in a cubicle, as long as his white blood counts are at zero (again today).

Since he is vulnerable to infection, he hasn't been able to see his cousins Andrea and Pierre yet who arrived from Beirut two days ago, both with a low fever.

Dad spent most of the last four days with Paul.

Paul had a few visits though: Daniele and Farid, Nanou, Elena, Zeina and Jamil, Esther and Michel.

He had a physio session today with Laura. It is difficult to work properly under antibiotics and with low blood counts but results were good nonetheless. Paul is truly making progress.




Also, he did his French and History homeworks.

"I'm afraid we're keen on keeping you tonight"

(Written by Philippe)

The title of this post must be heard said by Paul imitating doctors delivering the bad news to him ...

Paul is still in hospital, on antibiotics. His fever hovers between 37.4 and 37.9, he is neutropenic, and we noticed a warm patch of redness near his scar (it was already there perhaps, but we just noticed it).

Yesterday, Mireille was justifiably exhausted and asked me to take her place in Paul's room for the night without telling him so he would at least accept to go to sleep, thinking his mother was coming. For those who didn't follow the reports of my two nights spent with Paul some two months ago, Paul had deleted me from his roster of sleeping partners because of my snoring! Hard to believe if you ask me.

So he went to sleep and I followed suit a few minutes later, waking up every half hour or so because I was scared I might be snoring. Crazy!

Laura, the excellent and very good humoured night nurse confirmed today that I was awake every time she came to check on Paul.

But in the morning, Paul said very light-heartedly that I had basically ruined his night. Yet he didn't blame me or his mother too much for her treason and me for my complicity and we spent a very nice morning crowned by the ritual destruction of the egg using a crutch. I filmed it but it is too embarrassing.

This evening, when I attempted a repeat of yesterday's performance on permutations, but by being more transparent about it, he showed his displeasure in no uncertain terms (Paul's official statement on the matter) and I had to call his mother who promised she would come to sleep with him after her dinner out in town.

While awaiting Mireille's arrival, I spent an excellent evening with Paul, recollecting together all the great time we've had together, the people we've met during our vacations, the places we visited (including the incredibly boring "Ferme des Crocodiles" in Pierrelatte, the moray eels we had spotted in Akaba, Jordan, our ping pong games and tournaments at ATCL, our visit of Mount Vesuvio, etc ...

Paul promised himself he would do even more things, as soon as his treatment ends, even already planning to go to the swimming pool at night so as to avoid the sun which will always be more dangerous for him than for people not having gone through chemo.

At around 10:30 pm, results from his blood tests came in: Despite all the G-CSF injections given to him, his neutrophils level remained stuck at zero (some six days now!) which means he'll remain on antibiotics and under close observation. He looks in such a great shape that it is hard to imagine he is so vulnerable.

James, the registrar on call tonight, assured me that he had a few tricks up his sleeves in addition to the antibiotics he is currently giving him.

This time they kept us

As Paul had a low grade temperature for 24hours and neutrophils still at zero, Chelsea Westminster Hospital kept us this time.

Paul didn't care less surprisingly.

Farid and Daniele arrived from Beirut with a professional drawing set for Paul.
Paul was impressed to see Farid draw so well and quickly. He then tried himself a caricature of Jean-Paul..

He started antibiotics this evening. He'll be discharged on Monday or Tuesday based on the 48h culture results .

Zeina and Jamil came with a huge chocolate egg for Paul.

Happy Easter by the way.

Two visits to Chelsea Westminster today

Two visits to Chelsea Westminster hospital today: once in the morning to give a blood sample and get an injection to increase the white cells count (his neutrophils were at zero), and another in late afternoon to have a platelets transfusion (his count was at 19).

In between he had a maths tutorship with M. Dreyfus.

Ten to fourteen days after chemo, blood counts typically drop (along hopefully with the death of any remaining microscopic mets, not visible in imaging tests but assumed to be potentially present). This is why chemo will continue until August despite the primary tumor in the tibia having been removed.

Paul's morale is good and despite his bone marrow being on strike, he looks fine to me.

Dad and Jean-Paul arrived today.

Cramps

Paul woke up well and is well now, but he had a 2-hour episode of strong stomach ache and drop of energy as were were about to go to Chelsea Westminster to give a blood sample because there was no nurse available to come. The irreplaceable Pat carried him down the stairs as he felt too weak to do it by himself.

The blood test turned out clotted, so we have to repeat the exercise again tomorrow.

Clara has traveled (no UM service for the first time as she's 14) to Hamburg to spend the next four days with her cousins. They will drive to Prague and stay there during the long Easter weekend.

Alexandre visited in the afternoon.

It's Clara's birthday!

Clara is 14 today!

Paul, Dominique and Kathleen spent the afternoon decorating the flat and preparing a cake.

Five of Clara's friends arrived home by surprise and stayed for dinner.

Paul is doing well apart from the foot pain that is still preventing him from improving his walking.

Rest at home

Paul is feeling much better with almost no nausea and his leg pain under control.

We were relieved after we saw the surgeon, Mr.Skinner, yesterday, as he was very pleased with Paul's progress. The pain in the ankle probably comes from a stressed nerve which should disappear with physiotherapy.

The leg is expected to hurt for 2 months after surgery.

Paul is expected to walk with crutches for 3 to 6 months.

Agenda for the week: calm and rest at home and as often as possible, torture galore ... of the leg and of the mind: Paul is also a schoolchild. Remember?

On a more medical note, we are currently exploring whether we can start Paul on immunotherapy, just to increase his odds of staying disease-free after the end of chemo in July. This would involve injections of L-MTP-PE (or MEPACT) which should help Paul's macrophage cells eliminate any microscopic mets.

One more thing: Don't forget Mattie, Kelly, and others, whether present on the web or not: Nicholas and Jon (Paul's friends from the ward), Paula (in St Jude, Beirut; surgery on Good Friday), all the kids who one day started hurting and are since putting in the fight of their life ...

Meanwhile Clara..

Clara took part in a piano concert today, while Paul rested at home in the company of his faithful cousins.

Paul had a good physio session. Laura is coming again tomorrow to encourage him further but most of the effort lies with Paul to do his exercises on his own.

Over the next four weeks, focus will be on his walking, which is key to avoid stiffness and go back to quasi-normal mobility and life.

Boing!

Paul rebounded yesterday. A quiet night of sleep away from hospital, a good cocktail of pain killers, as well as antinausea drugs worked their magic.

We had lunch at the Habibs'. Paul stayed for the afternoon and had a good time with all his cousins. Meanwhile Clara and mum enjoyed a long stroll in sunny London.

Paul took his now customary late afternoon nap and was in good form to dine in one of his favourite restaurants with his cousins and Dominique.

After another good night of sleep, we hope Paul will improve today on the walking as the physiotherapist (the one in the videos) is coming. But yesterday already, thanks to persistent Suzy, he managed to put "2% of his weight" (mmm... this comes out at around 700 grams) on his left heel.

Sweet home

Paul arrived home yesterday at 10pm.

This week has probably been the most difficult since the beginning of the treatment in December. He suffered from a combination of strong pain in his ex-bad leg and nausea from chemotherapy. At the same time, he is required to do his physio exercises to avoid having additional pains from stiffness in the leg, which he had no energy for. Morale took a hit as his walking did not improve.

Today the community nurse came home to give him his last dose of antibiotics, and removed the cannula from his hand. What a joy with nothing hooked in his body now that the piccline is also out for two weeks!

He was still nauseous in the morning. It improved in the afternoon and he asked to go out for a walk (on his wheelchair), along with Clara.

No physio today as morale was a more pressing concern.

We're seeing the surgeon on Monday in order to check the pain in the ankle.

Discharged!

Paul is going home tonight after a few difficult days with recurrent nausea more or less controlled by anti nausea drugs that sent him napping regularly. Also, he had his sore ankle x-rayed today. There was nothing abnormal on the image. The hypothesis is that a few months of rest weakened the bones of his left leg. So he is starting on a regimen of phosphate to help them regain strength.

The indomitable Mme de Beaufort managed to give him a French class and Suzy made sure he spent his time as peacefully and studiously as possible, chasing (human) sources of noise when he wanted to nap, making sure he followed his routine of exercises, and also attending to his more basic (and often pressing) needs.

His piccline will be removed tomorrow and he will spend two weeks without one.

He is absolutely excited to be going home!

The thing ...

How did we forget to show it?

Here it is: The cold, unsung hero of March 17 ...

Ups and downs (didn't we use this title once already?)

This last couple of days Paul was very tired, physically but also mentally, becoming cranky and longing for being left alone or taken care of as unobtrusively, as lightly as possible. Mum had noted his need for visits, crowds even but now it is exactly the opposite. After he realized yesterday that recovering his function would be quite painful and not so easy, especially after a physiotherapist was apparently less than gentle with him, his otherwise faithful spring which had always straightened him back to his normal self, apparently failed him, and he burst into tears.

He said he appreciated everyone's kindness towards him, those who come from afar, Dominique, Téta and Jeddo, but that he'd love remaining as much as possible with those who know him well, that is his parents or Suzy. And mum called Suzy who jumped in the first plane. She arrived this morning and things are gradually going back to normal.

Téta and Jeddo stayed at the hospital, but largely as a discrete, understanding backup.

Physio sessions are going well and otherwise Paul recovered some appetite and some humor, read quite a bit, napped two or three times also ...