Happy Queens Day! We’re missing it this year. I’m not too bothered. We’ve had our share of Drunken Orange Days and there will be many more to come. Mar has strong views on the subject. After all, she’s not a Monarchist but a Republican (in the literal not political sense). The Monarchy should be abolished. If royalty wants to be recognized, they should just go to parties and prance around waving their titles. In fact, we should all be able to do that. After some consideration, she’d want to be a Duchess. In spite of her sarcasm, I do sense some regret at not being able to share these opinions while celebrating with her friends….NEXT YEAR MARA!
Dad left very early this morning to Turin. He needs to take care of some medical and insurance business. He frets about leaving us behind. He constantly worries. Do we have enough money? What will we eat? How will we get around without him? What if there’s an emergency? Who will we call? To him, we are and always will be the "bambine" (little girls). Being accustomed to it, we generally respond by rolling our eyes and teasing him in a playful daughterly way. Although….with him gone, I realize his presence really soothes and reassures me….I miss my Daddy!!!!
On the train, he sends us a text: “ Tutto (everything) according to plan?” I respond: “Tutto according to A Plan”. It’s true. The Master Plan keeps changing. Yesterday we found out the Biopsy results show that the Leukemic blasts in Mar’s body are spreading very fast. They would therefore rather anticipate by admitting Mar to the hospital today and not wait for Dad’s results as was originally intended.
Since Monday, Mar has been subjected to countless medical checks. She is getting fed up with all the waiting. And there’s a lot of waiting. Every morning she’s expected at 8.30am and every morning she waits for at least 30 min to an hour before anyone calls her name. She is handed her dossier and is then sent to find her own way through the hospital maize to the right department. She’s a quick learner and as the week progresses, she presents herself later and later in the morning. It’s no longer about what exams she’s taking but about how long she’s been waiting. “Look Paul” She points to a waiting area “That’s where I waited for over 40 minutes”. We still haven’t quite understood how this system works.
I fear this morning will be no different. They will insert a catheter in her upper chest area and she will receive blood platelets. The nurse is incapable to tell us how long it will take. And so the wait begins.
Later today Richard and Hege are coming!!!!!! Hurraaaayyyyyyyyyyyyyy. I can’t wait. I think we can both use some reinforcement and catch up on our “Other World”.
Since I am not allowed in with Mar, I leave to do some household chores in anticipation of our eagerly awaited Guests. After that, I reward myself with my growing obsession: Updating The Blog.
Thursday 30 April 2009
Wednesday 29 April 2009
Tue the 28th of Apr – And the award for best donor goes to
I am no longer the primary donor. It seems Mar picked up a lingering virus in her childhood which I didn’t. Therefore, my stem cells would probably not recognize it and cause trouble in Mar’s system. It’s too risky. I know the extent of my medical understanding must seem very impressive. Dad has now taken over the privilege of being primary donor. As we speak he is running around taking different medical tests. As disappointed and uncomprehending as I am, I couldn’t think of a worthier person. May all his tests go exceedingly well. We should find out by Monday if he is a suitable match.
The other day in town, we raided the bookstore. Mara always carries 2 to 3 books with her. A trait she inherited from Dad. And so we replenished her ambulant library. Her eye caught Milan Kundera’s “Unbearable Lightness of Being”. Both Dad and I tried dissuading her from buying it. I nearly succumbed to a depression after the third page…This only serves to intrigue Mar more. And so in the evening while I read up on Charlize Theron’s views on Hollywood women in the “MarieClaire” magazine, Mara ventures into Milan’s complicated and misunderstood world. Not surprisingly, she enjoys it. Mara has always had a deeper darker side that I could never have, even with all the lights turned off.
The other day in town, we raided the bookstore. Mara always carries 2 to 3 books with her. A trait she inherited from Dad. And so we replenished her ambulant library. Her eye caught Milan Kundera’s “Unbearable Lightness of Being”. Both Dad and I tried dissuading her from buying it. I nearly succumbed to a depression after the third page…This only serves to intrigue Mar more. And so in the evening while I read up on Charlize Theron’s views on Hollywood women in the “MarieClaire” magazine, Mara ventures into Milan’s complicated and misunderstood world. Not surprisingly, she enjoys it. Mara has always had a deeper darker side that I could never have, even with all the lights turned off.
Monday the 27th of Apr –Your call is important to us
At 9am sharp we show up at the day hospital for Mar’s bone marrow puncture and biopsy. There are 13 patients ahead of Mar...It’s almost call center like: “Your call is important to us. Please hold the line. You are our 14th caller. Please hold the line”. I wish there were another option: “If you want instantaneous remission please dial 1 now.” Wouldn’t that be something! Since it’s very busy only Mar goes into the waiting room. Dad decides to run some more errands and I check my email back at the Chianelli main building. Around 10.30, Dad calls me. They are urgently looking for me. Unfortunately they can’t dial International numbers so they contact Dad instead. Only they won’t tell him what’s going on. They will only speak to me. OMG. Is everything ok? My heart is pounding. I race back to the hospital thinking of more doomsday scenarios. All my positive thinking shamefully tossed out of the window. I nervously present myself at the front desk and am quickly brought to Michela, one of the nurses. She tells me they made an appointment for me at a different hospital for a cardiogram. There’s a driver waiting downstairs for me and I must hurry before he leaves in 5 minutes. Relief washes over me. I call Dad to meet me downstairs. He’s lost in the hospital labyrinth and only 5 minutes later do we find each other. 20 minutes later and we still haven’t left…The driver is waiting for another package (I am after all quite a piece!). Another 10 minutes and we’re finally off….Such commotion in the morning can’t be good for my heart…Thank god I’m seeing a Cardiologist.
In the meantime, Mara and I stay in touch via sms. We’re now speaking in Italian medical terms…If you’d told me this same time last year…I would’ve laughed…Mar just finished her “radiopanoramica” (Xray) and is still waiting for her “Aspirato” (puncture). Me, I’m waiting for my “ecografia” and “eletrocardiografia”.
I enter an unlit room. There are 3 doctors discussing in medical gibberish for all I know. They ignore me. Half naked, I lie on my side and a friendly lady doctor, does the cardiogram. I may be eating for two but I hear only one heartbeat. This is a first for me so I giggle nervously while listening to the beat!
It’s 1pm by the time both Mar and I are done. She’s waiting for us at the hospital bar. Dad and I hitch a ride in an ambulance back to the hospital. On the way, we witness an accident. A motorcyclist is hit by a car. Our ambulance driver stops to assist. I’m not sure why, but he has no authority to do anything and 5 minutes later we hear the siren of another ambulance approaching.
The faint of heart may want to skip this next part. Mar’s nerves are still unhappily twitching from the invasive biopsy. They extracted quite a little chunk of bone from her hip. Mar dismisses the experience as nothing more then unpleasant but tolerable. My beautiful strong funny sister. This she can handle! Even chemo, she bore without so much as a complaint. But ask her to swallow any kind of pill, even the smallest and watch her face instantly drain of all color. It’s a trauma she suffered years ago when she almost choked on one. Since then, as irrational as it may seem, nothing and nobody can tempt her. End of story. Non negotiable. The nurses in the Netherlands understood very quickly to take this phobia seriously and so Mara received pills in either crushed or liquid form. We’ll soon find out how Italian nurses take to it. If not kindly, they’ll soon find out just how stubborn Mar can be!
We’re expected back at the hospital tomorrow morning at 8.30am. Not sure yet what to expect. May it be another good day.
In the meantime, Mara and I stay in touch via sms. We’re now speaking in Italian medical terms…If you’d told me this same time last year…I would’ve laughed…Mar just finished her “radiopanoramica” (Xray) and is still waiting for her “Aspirato” (puncture). Me, I’m waiting for my “ecografia” and “eletrocardiografia”.
I enter an unlit room. There are 3 doctors discussing in medical gibberish for all I know. They ignore me. Half naked, I lie on my side and a friendly lady doctor, does the cardiogram. I may be eating for two but I hear only one heartbeat. This is a first for me so I giggle nervously while listening to the beat!
It’s 1pm by the time both Mar and I are done. She’s waiting for us at the hospital bar. Dad and I hitch a ride in an ambulance back to the hospital. On the way, we witness an accident. A motorcyclist is hit by a car. Our ambulance driver stops to assist. I’m not sure why, but he has no authority to do anything and 5 minutes later we hear the siren of another ambulance approaching.
The faint of heart may want to skip this next part. Mar’s nerves are still unhappily twitching from the invasive biopsy. They extracted quite a little chunk of bone from her hip. Mar dismisses the experience as nothing more then unpleasant but tolerable. My beautiful strong funny sister. This she can handle! Even chemo, she bore without so much as a complaint. But ask her to swallow any kind of pill, even the smallest and watch her face instantly drain of all color. It’s a trauma she suffered years ago when she almost choked on one. Since then, as irrational as it may seem, nothing and nobody can tempt her. End of story. Non negotiable. The nurses in the Netherlands understood very quickly to take this phobia seriously and so Mara received pills in either crushed or liquid form. We’ll soon find out how Italian nurses take to it. If not kindly, they’ll soon find out just how stubborn Mar can be!
We’re expected back at the hospital tomorrow morning at 8.30am. Not sure yet what to expect. May it be another good day.
Monday 27 April 2009
Sunday the 26th of Apr – Brief Encounters
Umbria Weather Forecast: overcast, partially rainy with temperatures below 20 degrees. Chilly.
Rossini Mood Forecast: minor thunderbolts in the morning followed by clear blue skies. Warm and relaxed temperatures.
On the main square yesterday, we coincidentally ran into the gentleman who arranged the meeting for us with Professor Martelli. To refresh your memory, he’s the friend of the friend of the friend of my Dad’s. We’re in a hurry to catch the bus back home (they run on an hourly basis) so we can’t stay too long. Marcello and his wife Graziella suggest we meet again the next day for an aperitif. A lovely couple. Their concern is genuine, unconditional without any strings attached. To Marcello, we are truly very grateful. I don’t think it would have been as easy to secure a meeting with Professor Martelli on such short notice. It turns out he is well connected in many different social circles. Dad mentions where we plan to dine this evening and he immediately tells him to extend his greetings to the owner,Gian Carlo. This is sure to guarantee even friendlier service and perhaps “lighten” our restaurant bill. That’s how it works around here!
At lunch, we tried the Marcello Method and joked with Dad when the bill arrived: “tell the waiter Marcello says Hi”…. Who knows, his web may expand to the Netherlands. Next time you want preferential treatment, just tell’em Marcello says Hi! I wonder if it would’ve made a difference with Ryanair. Probably not... I doubt a happy : “Paddy says good morn to you” would’ve mattered either.
Restaurants here are rather old fashioned. This isn’t criticism on my part. More of a fact. We lunched at “La Rosetta”. The menu cover displays a photo of a pink rose. The kind you find on a cheesy eighties Hallmark Card. A little outdated. The service is excellent, very formal and professional. The waiters walk around in white jackets and black bowties. They address my father as Dottore (Doctor) which is the respectful way to speak to your patrons. The restaurant itself is very spacious with high arched ceilings. The lighting bright and artificial. On one side, a teenager sits with an older white haired lady. His grandmother I assume. They form an unusual couple. More so because this is the second time we lunch at this restaurant and it’s the second time I see them. Seated at exactly the same table. For a minute I wonder if they’re really there or if they’re a figment of my imagination. No. Mar sees them too. In front of us, two older women are eating and chatting away. They remind me of the “Two Fat Ladies” from the BBC cooking program The restaurant and its crowd are eerily reminiscent of scenes from “The Shining”. I won’t look at old photos on the walls for fear of catching a reflection of ourselves smiling back from a distant past…
We’ll definitely come back. The food is excellent.
From the bus, while admiring the Perugian architecture, one building stands out. It’s Barbie’s Mothership! A huge bright pink see through oval construction…Very funny, very out of place. Hege and Richard, you’ll both love it!
Back home, Dad and I head to the main building so I can update my blog. It’s becoming very addictive and I now obsessively take note of every minor insignificant detail. It relaxes me.
One last event worthy of mention before checking out for the night. As we leave the Internet space, another couple walks in. A father and son. In such a place, one automatically does away with formalities and conversation is easy. They look South American and I take a shot at speaking Spanish with them. Sure enough they turn out to be Venezuelan! For those of you that don’t know, Mar and I grew up in Venezuela. It will always be a very special place and dear to our hearts. Pedro senior and junior. Young Pedro is the one with Lymphatic Leukemia. He’s 20 years old, not so much timid as he is reserved and I think he really just wants to surf the web…He probably has a profile on facebook desperately needing to be updated and has little time for small talk. They arrived a few months ago and he is waiting for his transplant.
Monday morning at 9am, Mar’s expected for a bone marrow puncture. Dad and I will probably also be scheduled in for some exams. May it be another good day.
Rossini Mood Forecast: minor thunderbolts in the morning followed by clear blue skies. Warm and relaxed temperatures.
On the main square yesterday, we coincidentally ran into the gentleman who arranged the meeting for us with Professor Martelli. To refresh your memory, he’s the friend of the friend of the friend of my Dad’s. We’re in a hurry to catch the bus back home (they run on an hourly basis) so we can’t stay too long. Marcello and his wife Graziella suggest we meet again the next day for an aperitif. A lovely couple. Their concern is genuine, unconditional without any strings attached. To Marcello, we are truly very grateful. I don’t think it would have been as easy to secure a meeting with Professor Martelli on such short notice. It turns out he is well connected in many different social circles. Dad mentions where we plan to dine this evening and he immediately tells him to extend his greetings to the owner,Gian Carlo. This is sure to guarantee even friendlier service and perhaps “lighten” our restaurant bill. That’s how it works around here!
At lunch, we tried the Marcello Method and joked with Dad when the bill arrived: “tell the waiter Marcello says Hi”…. Who knows, his web may expand to the Netherlands. Next time you want preferential treatment, just tell’em Marcello says Hi! I wonder if it would’ve made a difference with Ryanair. Probably not... I doubt a happy : “Paddy says good morn to you” would’ve mattered either.
Restaurants here are rather old fashioned. This isn’t criticism on my part. More of a fact. We lunched at “La Rosetta”. The menu cover displays a photo of a pink rose. The kind you find on a cheesy eighties Hallmark Card. A little outdated. The service is excellent, very formal and professional. The waiters walk around in white jackets and black bowties. They address my father as Dottore (Doctor) which is the respectful way to speak to your patrons. The restaurant itself is very spacious with high arched ceilings. The lighting bright and artificial. On one side, a teenager sits with an older white haired lady. His grandmother I assume. They form an unusual couple. More so because this is the second time we lunch at this restaurant and it’s the second time I see them. Seated at exactly the same table. For a minute I wonder if they’re really there or if they’re a figment of my imagination. No. Mar sees them too. In front of us, two older women are eating and chatting away. They remind me of the “Two Fat Ladies” from the BBC cooking program The restaurant and its crowd are eerily reminiscent of scenes from “The Shining”. I won’t look at old photos on the walls for fear of catching a reflection of ourselves smiling back from a distant past…
We’ll definitely come back. The food is excellent.
From the bus, while admiring the Perugian architecture, one building stands out. It’s Barbie’s Mothership! A huge bright pink see through oval construction…Very funny, very out of place. Hege and Richard, you’ll both love it!
Back home, Dad and I head to the main building so I can update my blog. It’s becoming very addictive and I now obsessively take note of every minor insignificant detail. It relaxes me.
One last event worthy of mention before checking out for the night. As we leave the Internet space, another couple walks in. A father and son. In such a place, one automatically does away with formalities and conversation is easy. They look South American and I take a shot at speaking Spanish with them. Sure enough they turn out to be Venezuelan! For those of you that don’t know, Mar and I grew up in Venezuela. It will always be a very special place and dear to our hearts. Pedro senior and junior. Young Pedro is the one with Lymphatic Leukemia. He’s 20 years old, not so much timid as he is reserved and I think he really just wants to surf the web…He probably has a profile on facebook desperately needing to be updated and has little time for small talk. They arrived a few months ago and he is waiting for his transplant.
Monday morning at 9am, Mar’s expected for a bone marrow puncture. Dad and I will probably also be scheduled in for some exams. May it be another good day.
Sunday 26 April 2009
Saturday the 25th of Apr – Protecting our investment
Dad bumped into Professor Martelli yesterday. The Professor immediately recognized him and addressed him more as one father to another. He repeated that although Mar’s situation is difficult, there is hope. I think Dad really appreciated this gesture. While chatting in bed, it makes Mar and I reflect on these past few days. We come to the conclusion that Professor Martelli really believes his treatment can make a difference. He has complete faith where the Dutch decided Mar's Return On Investment is too low! This makes us laugh. Harsh but real. Ultimately Mar knows she will overcome this. That’s all that matters.
Since there is a good chance I will be Mar’s donor, Mom uses this as even more ammunition to make me eat healthier. Eat more vegetables and fruit, she tirelessly preaches! Every opportunity she gets on the phone is one to reinforce this message. In fact she even gets Dad to send her sms reports of our daily dietary regime…Moms will be moms.
Mar takes it one step further and jokes that I’m eating for two now! I retort by resorting to the classic guilt trip: “You better be nice to me Mar, I’m giving you my stem cells!”
We slept well last night although we’re not sure if the walls are thin or if our neighbors are just loud. It’s probably both. This is the first day since the beginning of our Italian mission that we can sleep in and relax. It’s been exhausting not as much physically as it has mentally. I dare anyone to deny that even the most loving of families know moments of irritation among its members…Mildly put of course! I’m sure you can also appreciate that Mar, Dad and I all have very different characters. Under stress, we each have our own ways to calm ourselves. Dad gets restless, a little more talkative and is constantly on the move. Mar achieves relaxation by overdosing on cappuccinos, reading and making intelligent remarks on the articles being read. My symptoms manifest in a dangerous drop of my patience level, heightened snappiness and solitude is desperately needed to recharge. Clearly our M.O.s far from complement each other and it becomes even less bearable when on each other’s lip 24/7.
Thankfully, in most cases two of us will clash while the 3rd acts as a mediator/translator in the event of miscommunication. So we take turns. It also helps that our family manages to diffuse stressful situations with humor and so Dad may explode one minute, the next he’ll crack a joke and make us smile.
Our irritations while frequent never last long.
Dad saw little Chiara this morning too. Behind her mask she breathes like the great great great granddaughter of Darth Vader. It doesn’t seem to bother her and she happily trots around under the constant watchful eyes of at least 2 adoring adults.
We have lunch in town again today. It’s a beautiful day. After lunch, we stroll about before installing ourselves on a sunny terrace overlooking the hills. Dad leaves us to run some errands, Mar has her cappuccino and reads the Economist, I soak up the sun and silently enjoy the view…Bliss!
Since there is a good chance I will be Mar’s donor, Mom uses this as even more ammunition to make me eat healthier. Eat more vegetables and fruit, she tirelessly preaches! Every opportunity she gets on the phone is one to reinforce this message. In fact she even gets Dad to send her sms reports of our daily dietary regime…Moms will be moms.
Mar takes it one step further and jokes that I’m eating for two now! I retort by resorting to the classic guilt trip: “You better be nice to me Mar, I’m giving you my stem cells!”
We slept well last night although we’re not sure if the walls are thin or if our neighbors are just loud. It’s probably both. This is the first day since the beginning of our Italian mission that we can sleep in and relax. It’s been exhausting not as much physically as it has mentally. I dare anyone to deny that even the most loving of families know moments of irritation among its members…Mildly put of course! I’m sure you can also appreciate that Mar, Dad and I all have very different characters. Under stress, we each have our own ways to calm ourselves. Dad gets restless, a little more talkative and is constantly on the move. Mar achieves relaxation by overdosing on cappuccinos, reading and making intelligent remarks on the articles being read. My symptoms manifest in a dangerous drop of my patience level, heightened snappiness and solitude is desperately needed to recharge. Clearly our M.O.s far from complement each other and it becomes even less bearable when on each other’s lip 24/7.
Thankfully, in most cases two of us will clash while the 3rd acts as a mediator/translator in the event of miscommunication. So we take turns. It also helps that our family manages to diffuse stressful situations with humor and so Dad may explode one minute, the next he’ll crack a joke and make us smile.
Our irritations while frequent never last long.
Dad saw little Chiara this morning too. Behind her mask she breathes like the great great great granddaughter of Darth Vader. It doesn’t seem to bother her and she happily trots around under the constant watchful eyes of at least 2 adoring adults.
We have lunch in town again today. It’s a beautiful day. After lunch, we stroll about before installing ourselves on a sunny terrace overlooking the hills. Dad leaves us to run some errands, Mar has her cappuccino and reads the Economist, I soak up the sun and silently enjoy the view…Bliss!
Friday 24 April 2009
Friday 24th of Apr – Blood Check
This morning, they drew my blood and asked for a urine sample. I kept my eyes closed and felt a tiny pinch (for the blood not the pee). I can’t help comparing Italy to the Netherlands. Here, they call you into a room and while one nurse draws blood, people walk in and out. Doctors, other patients wanting to greet the nurses…They’re all very friendly and familiar with each other and there’s a general buzz. One nurse offers me a juice because she’s worried that I’m looking very pale…Afterwards, Mar and I go for our first cappuccino of the day. Here’s to the little pleasures in life! It only costs 90cents around here.
It’s now 12.15 and we’re free until Monday. Mar will then have another bone marrow puncture and Dad and I will probably continue with our tests. I think we’ll take it easy. Take a bus to town and be tourists. After all we are grateful to the Perugians.
After lunch in town we go for a walk, do some groceries and head back “home”. I understand they have wireless in the Chianelli complex. Marcello, Elenora and Guiliola all help me set up. I am overwhelmed by the kindness of these people. They joke with me and both ladies hug me. It’s a simple yet very genuine gesture and I like it. While typing away in the little office, a little girl walks in followed by Guiliola. Her name is Chiara. She’s 3 years old, has big brown almond shaped eyes with very long dark eyelashes. She’s wearing a mask over her mouth and has no hair. She had her transplant in February. She seems momentarily taken by me or rather by my laptop and Guiliola’s efforts to coax her away are useless. At one point, Guiliola threatens to leave, then leaves. This doesn’t seem to worry Chiara. Quite the opposite. She very confidently closes the door! So I place her on my lap and we Google some animal images. Finally Guiliola comes back and tells her that her Mommy is leaving by car. That has the desired effect and Chiara jumps off my lap crying after her Mom.
It’s now 12.15 and we’re free until Monday. Mar will then have another bone marrow puncture and Dad and I will probably continue with our tests. I think we’ll take it easy. Take a bus to town and be tourists. After all we are grateful to the Perugians.
After lunch in town we go for a walk, do some groceries and head back “home”. I understand they have wireless in the Chianelli complex. Marcello, Elenora and Guiliola all help me set up. I am overwhelmed by the kindness of these people. They joke with me and both ladies hug me. It’s a simple yet very genuine gesture and I like it. While typing away in the little office, a little girl walks in followed by Guiliola. Her name is Chiara. She’s 3 years old, has big brown almond shaped eyes with very long dark eyelashes. She’s wearing a mask over her mouth and has no hair. She had her transplant in February. She seems momentarily taken by me or rather by my laptop and Guiliola’s efforts to coax her away are useless. At one point, Guiliola threatens to leave, then leaves. This doesn’t seem to worry Chiara. Quite the opposite. She very confidently closes the door! So I place her on my lap and we Google some animal images. Finally Guiliola comes back and tells her that her Mommy is leaving by car. That has the desired effect and Chiara jumps off my lap crying after her Mom.
Thursday the 23rd of Apr – La Foresteria: an Umbrian place under the sun
According to my blood test, I can be a donor for this type of transplant. Yeahhhhhhhhhhhh! Don’t ask what exactly they look for as long as they work their magic. Dad’s results will be known on Monday. He may be a better match in which case he’ll be the primary donor. Both my Mom and uncle are on stand by just in case. It’s important to have one donor and a back up. Tomorrow they’ll draw more of my blood and next week I’ll do a series of medical checks to make sure I’m up to the job. Perhaps now’s not a good time to tell them I’m terrified of needles…I’m such a coward! Mar’s endured her share of punctures to last for a lifetime…And here I am cowering away at the thought of one little bite. Mar’s been reassuring me all day about how I won’t feel a thing. She’ll hold my hand and I’ll keep my eyes shut tight. Professor Martelli would approve.
We’re more and more pleasantly surprised by the Italian medical system. There’s an apartment complex at walking distance from the hospital. Not more then 5 minutes away. Patients and family can stay there for free. It was built by Franco Chianelli in memory of his son Daniele who passed away from Leukemia a few years ago. We’re even introduced to him while being given the tour. He seems like a quiet man with kind eyes. Unfortunately at the moment there isn’t any availability. Not a problem. There’s an older annex called La Foresteria a little further down where we can stay for close to nothing. Francesca and Guiliola, two volunteers accompany us there. We walk through a short pebbled avenue bordered by pine trees & cypresses. It’s striking how green and quiet it is around here. The annex is behind a residence once belonging to a “Contessa” from the aristocratic Sforza Family. It’s since been sold to the hospital and converted to administrative offices. The Villa is named Capitini and it really looks like one of those typical old faded peach colored Tuscan holiday houses one dreams of vacationing at. There’s even a panoramic view over Perugia and its hills.
Is this for real? Could this be some elaborate scheme designed by the Universe to give us a holiday? I wish…
After the hospital, we treat our Italian contacts, Eros and his wife to lunch in Perugia’s city center. They choose the restaurant ( L’Altro Mondo- the Other World) and drive us to it. They are a nice couple….Though later this evening, Dad mentions a conversation he had with the wife. All in Italian:
- “Rocco, you should do some sight seeing while your daughter is in the hospital. There are beautiful places to visit.
- Forgive me but I’m not really in the mood to be a tourist in a city where my daughter is undergoing chemo and radio therapy in the local hospital.
- What? How do you mean? On the contrary, you should admire this place and be grateful to Perugia and Perugians, if it weren’t for them, for Eros and I, and for our friend who knows the Professor, you would no longer have your daughter!”
Dad probably thought it wise to bite his tong knowing after all that there is always more then one road leading to Perugia. While grateful to “our benefactors”, I wonder what the going rate for gratitude is these days.
We move to La Foresteria tomorrow morning.
We’re more and more pleasantly surprised by the Italian medical system. There’s an apartment complex at walking distance from the hospital. Not more then 5 minutes away. Patients and family can stay there for free. It was built by Franco Chianelli in memory of his son Daniele who passed away from Leukemia a few years ago. We’re even introduced to him while being given the tour. He seems like a quiet man with kind eyes. Unfortunately at the moment there isn’t any availability. Not a problem. There’s an older annex called La Foresteria a little further down where we can stay for close to nothing. Francesca and Guiliola, two volunteers accompany us there. We walk through a short pebbled avenue bordered by pine trees & cypresses. It’s striking how green and quiet it is around here. The annex is behind a residence once belonging to a “Contessa” from the aristocratic Sforza Family. It’s since been sold to the hospital and converted to administrative offices. The Villa is named Capitini and it really looks like one of those typical old faded peach colored Tuscan holiday houses one dreams of vacationing at. There’s even a panoramic view over Perugia and its hills.
Is this for real? Could this be some elaborate scheme designed by the Universe to give us a holiday? I wish…
After the hospital, we treat our Italian contacts, Eros and his wife to lunch in Perugia’s city center. They choose the restaurant ( L’Altro Mondo- the Other World) and drive us to it. They are a nice couple….Though later this evening, Dad mentions a conversation he had with the wife. All in Italian:
- “Rocco, you should do some sight seeing while your daughter is in the hospital. There are beautiful places to visit.
- Forgive me but I’m not really in the mood to be a tourist in a city where my daughter is undergoing chemo and radio therapy in the local hospital.
- What? How do you mean? On the contrary, you should admire this place and be grateful to Perugia and Perugians, if it weren’t for them, for Eros and I, and for our friend who knows the Professor, you would no longer have your daughter!”
Dad probably thought it wise to bite his tong knowing after all that there is always more then one road leading to Perugia. While grateful to “our benefactors”, I wonder what the going rate for gratitude is these days.
We move to La Foresteria tomorrow morning.
Wednesday 22 April 2009
Wednesday 22nd of Apr – First impressions
It’s surreal to think that exactly one week ago, Mar was given the Dutch Final Verdict... Today we met with Professor Martelli and received some hopeful news. The hospital will treat her. No guarantees but maybe all roads do lead to Rome after all…Ok, next door…to Perugia.
Professor Martelli is a friendly authoritarian older man. According to him, this is Mar’s only hope. We need to act at the speed of light. Mar will need to undergo another chemo and radio therapy in the next 5 days or so. In the meantime, her direct family will be tested for the best match. It’s the famous Haploidentical Stem Cell Transplantation I talked about earlier.
He reminds me of a Patriarch. He asks Mar to blindly take the plunge and put her life in his protective care. No questions asked…LITERALLY. During the entire meeting, there is little to no room for questions. This frustrates me. Mar quickly understands that with this Italian gentleman, resistance is futile. Courtesy of 8 years of Parisian Education with similar French professors. She remains quiet while my dad and I stubbornly try interjecting a few more times before giving up. It’s ok to take the plunge but couldn’t we keep our eyes open? How about just one eye?
No matter. As Mar wisely pointed out. We tried the Dutch way. It didn’t work. It’s time for a new approach. And Professor Martelli is very committed to helping her. After our “audience” with him, he introduces us to Mar’s treating physician and leaves us. Dr Aloisi is our age. She seems very competent and is able in a few minutes to answer most of our burning questions. Mar feels this is the right way to go…She’s shown to the department where she’ll be treated. I’m not allowed in but Mar says it looks very impressive and extremely clean. You have to wear plastic bags over your shoes before entering. In fact, under the circumstances, as far as hospitals go, this one looks inviting.
We still have to sort out the insurance but it may help that Mar’s an Italian citizen. We’ll find out soon enough. My Dad’s looking into it.
While waiting for Professor Martelli this morning, we saw another young lady with the unmistakable mark of the big C (not the big I before slam): a headscarf. What inspired us most was her Doctor’s coat. She was treating a patient. Cancer does not discriminate and life just goes on.
We haven’t dismissed MD Anderson all together but it’s very likely that Perugia will be Mar’s new residence for at least the next 4 to 5 weeks. Who’ll be Mar’s first visitor and brave the Ryanair flight?
We’re exhausted and after a late lunch, we head back to the hotel for a nap. Not even here a day and already taking siestas. When in Ro…I mean Perugia. Right?
Today was another good day. May there be many many many more.
Professor Martelli is a friendly authoritarian older man. According to him, this is Mar’s only hope. We need to act at the speed of light. Mar will need to undergo another chemo and radio therapy in the next 5 days or so. In the meantime, her direct family will be tested for the best match. It’s the famous Haploidentical Stem Cell Transplantation I talked about earlier.
He reminds me of a Patriarch. He asks Mar to blindly take the plunge and put her life in his protective care. No questions asked…LITERALLY. During the entire meeting, there is little to no room for questions. This frustrates me. Mar quickly understands that with this Italian gentleman, resistance is futile. Courtesy of 8 years of Parisian Education with similar French professors. She remains quiet while my dad and I stubbornly try interjecting a few more times before giving up. It’s ok to take the plunge but couldn’t we keep our eyes open? How about just one eye?
No matter. As Mar wisely pointed out. We tried the Dutch way. It didn’t work. It’s time for a new approach. And Professor Martelli is very committed to helping her. After our “audience” with him, he introduces us to Mar’s treating physician and leaves us. Dr Aloisi is our age. She seems very competent and is able in a few minutes to answer most of our burning questions. Mar feels this is the right way to go…She’s shown to the department where she’ll be treated. I’m not allowed in but Mar says it looks very impressive and extremely clean. You have to wear plastic bags over your shoes before entering. In fact, under the circumstances, as far as hospitals go, this one looks inviting.
We still have to sort out the insurance but it may help that Mar’s an Italian citizen. We’ll find out soon enough. My Dad’s looking into it.
While waiting for Professor Martelli this morning, we saw another young lady with the unmistakable mark of the big C (not the big I before slam): a headscarf. What inspired us most was her Doctor’s coat. She was treating a patient. Cancer does not discriminate and life just goes on.
We haven’t dismissed MD Anderson all together but it’s very likely that Perugia will be Mar’s new residence for at least the next 4 to 5 weeks. Who’ll be Mar’s first visitor and brave the Ryanair flight?
We’re exhausted and after a late lunch, we head back to the hotel for a nap. Not even here a day and already taking siestas. When in Ro…I mean Perugia. Right?
Today was another good day. May there be many many many more.
Tuesday the 21st of Apr - Ryanair fiasco
On the road again…It will cost us more then 2000 euros to get to Rome with KLM/Alitalia. The bastards pretty much monopolise the market and little competition allows them to demand outrageous prices. We decide to fly with Ryanair from Eindhoven. We'll take it very easy. So we leave at 10am to take the train. Richard drops us off at the station in Amsterdam. It goes smoothly until we reach Eindhoven airport. I checked us in online in the morning but was unable to print our boarding passes. Well…a little more useless information for you: beware - they charge 20 euros extra per person to print them for us at the check in gate. Also, they’re very strict with cabin handluggage. When they say 1 item, they really just mean ONE item. Another 20 euros per person. Double whammy. Will they charge for breathing next? There’s a class of rowdy Dutch teenagers flying with us today. In the plane, a group of young Italians equals the Dutch in rowdiness…Joy…Very entertaining cultural contrast. Triple whammy. We make it to Rome in one piece, perhaps psychologically a little more damaged then before. Mar plans to write a letter of complaint...
The Perugian countryside is beautiful. We enjoy the ride to the home of our hosts. We’re a little wary to meet Phone Lady. She turns out to be very friendly. High on energy and lots of character. She’s Danish having lived in Italy for the last 50 years. Her husband’s Italian. He’s lovely. They’re both very hospitable and genuinely concerned. After a lively dinner Eros drops us off at a Bed & Breakfast down the road. Really nice place.
Off to sleep now. Another good day. We meet Dr Martelli tomorrow morning at 9am.
The Perugian countryside is beautiful. We enjoy the ride to the home of our hosts. We’re a little wary to meet Phone Lady. She turns out to be very friendly. High on energy and lots of character. She’s Danish having lived in Italy for the last 50 years. Her husband’s Italian. He’s lovely. They’re both very hospitable and genuinely concerned. After a lively dinner Eros drops us off at a Bed & Breakfast down the road. Really nice place.
Off to sleep now. Another good day. We meet Dr Martelli tomorrow morning at 9am.
Monday the 20th of Apr - Roadtrip to Gent
Today was a good day. Richard, Mar and I drove to Gent to visit NLP practitioners. The mind requires as much healing as the body. Doctors can work on Mar’s physical well being, she’s working on her mental state of mind. Most of you know Mar. She doesn’t shy away from a challenge. If anything, it sparks rebellion in her and makes her even more contentious. So why not channel that with even more positive thinking. Today, she even meditated for 10 whole minutes. Again, if you know Mar, you’ll know, thinking of nothing for even a second is a great accomplishment. I’m so proud! I’m usually the one to think of nothing.
While she speaks with these people, her team of personal assistants, Richard, Dad and I work on logistics. Booking flights to Perugia, accomodation, speaking with Mar’s Insurance Company, HR, responding to emails and calls of concerned and very helpful friends.
The trip didn’t go without a couple of dramatic moments. The day before, halfway to Belgium, the wife of our Italian contact calls. I don’t know her and it took me a while to place her over the phone. She impresses upon us the gravity and urgency of Mar’s situation. She says they spoke to Dr Martelli. If we want Mar to live, we need to leave NOW. TONIGHT. Not a moment to lose. I’m trying to make sense of this conversation. She insists. Mar is going to die if we don’t leave immediately. She says we need to understand our priorities. I try to clarify…What exactly did Dr Martelli say? “Paula, I already told you 5 times what he said, your sister will die if she doesn’t come straight away…”The conversation ends rather abruptly.
So here we are…I’m shaken…Mar’s indignant. As the protective older sister, of course her first worry is my reaction to this. Typical Mar. Richard’s driving. Calm. We decide to turn back…We’re not at all amused with this turn of events. We’re very disappointed because her mind deserves attention…We sanity check with our father. He received a similar phone call a few moments ago. He agrees there may be some exaggeration on their part. You think? We should continue our journey. We stop at the Rotterdam airport to compose ourselves and decide on our next step. After a lot of cussing (Italian style) our Dutch sobriety kicks in and we reverse again. Through out, Richard remains patient, reasonable, with the right dose of humour to lighten the moment…Good Old Richard…
So where were we? Ah yes…Positive thinking….In that spirit, let’s draw some valuable lessons from this experience:
Lesson 1: We will not be told what to do by others, no matter how well intended. Mara ultimately decides what SHE wants. Counseling is always welcome but ultimately we’re here to support HER.
Lesson 2: Be thankful for great friends, patient, stable, humorous.
Lesson 3: Being half Dutch ain’t all that bad.
After a few detours - our NLV (Navigating Lady Voice) while friendly isn’t very cooperative, she may not have appreciated Richard’s one too many sarcastic “Yes Dear” - we finally make it to our hotel around 10.30pm.
We’re starving and tired. The bar’s still open so we order hamburgers. They’re very chewy. We complain, the waiter all too readily agrees. Interesting bit of useless information but did you know the Marriott imports all its burger meat from America? Yuck…Mar plans to write a letter of complaint. Then again, we should know better then to order burgers in such a culinary city as Gent. Serves us right.
In spite of the hurdles…It was a good day. Tomorrow we leave for Italy. It’s going to be another long day. Another adventure.
While she speaks with these people, her team of personal assistants, Richard, Dad and I work on logistics. Booking flights to Perugia, accomodation, speaking with Mar’s Insurance Company, HR, responding to emails and calls of concerned and very helpful friends.
The trip didn’t go without a couple of dramatic moments. The day before, halfway to Belgium, the wife of our Italian contact calls. I don’t know her and it took me a while to place her over the phone. She impresses upon us the gravity and urgency of Mar’s situation. She says they spoke to Dr Martelli. If we want Mar to live, we need to leave NOW. TONIGHT. Not a moment to lose. I’m trying to make sense of this conversation. She insists. Mar is going to die if we don’t leave immediately. She says we need to understand our priorities. I try to clarify…What exactly did Dr Martelli say? “Paula, I already told you 5 times what he said, your sister will die if she doesn’t come straight away…”The conversation ends rather abruptly.
So here we are…I’m shaken…Mar’s indignant. As the protective older sister, of course her first worry is my reaction to this. Typical Mar. Richard’s driving. Calm. We decide to turn back…We’re not at all amused with this turn of events. We’re very disappointed because her mind deserves attention…We sanity check with our father. He received a similar phone call a few moments ago. He agrees there may be some exaggeration on their part. You think? We should continue our journey. We stop at the Rotterdam airport to compose ourselves and decide on our next step. After a lot of cussing (Italian style) our Dutch sobriety kicks in and we reverse again. Through out, Richard remains patient, reasonable, with the right dose of humour to lighten the moment…Good Old Richard…
So where were we? Ah yes…Positive thinking….In that spirit, let’s draw some valuable lessons from this experience:
Lesson 1: We will not be told what to do by others, no matter how well intended. Mara ultimately decides what SHE wants. Counseling is always welcome but ultimately we’re here to support HER.
Lesson 2: Be thankful for great friends, patient, stable, humorous.
Lesson 3: Being half Dutch ain’t all that bad.
After a few detours - our NLV (Navigating Lady Voice) while friendly isn’t very cooperative, she may not have appreciated Richard’s one too many sarcastic “Yes Dear” - we finally make it to our hotel around 10.30pm.
We’re starving and tired. The bar’s still open so we order hamburgers. They’re very chewy. We complain, the waiter all too readily agrees. Interesting bit of useless information but did you know the Marriott imports all its burger meat from America? Yuck…Mar plans to write a letter of complaint. Then again, we should know better then to order burgers in such a culinary city as Gent. Serves us right.
In spite of the hurdles…It was a good day. Tomorrow we leave for Italy. It’s going to be another long day. Another adventure.
Saturday 18 April 2009
The Clinics
Our Dad sent out an email to all his friends updating them on this latest development. The very same evening, one of them calls him back. He knows the friend of a friend of Dr Martelli from Perugia. How typically Italian! So if all goes according to plan, Mar, Dad and I have an appointment next Thursday with Dr Martelli in Perugia.
Fingers crossed.
This center specializes in Haploidentical Stem Cell Transplantation which means they can take the siblings stemcells even if originally incompatible and work some kind of magic to adapt them to Mar's.
On the American front, Dr Kantarjian read Mar's medical summary and immediately responded with his suggested treatment...Just like that. His exact words being: "You could try clofarabine + ida + high dose araC or Fludara+ highdose araC + mylotarg". Can we get a prescription for that at our local farmacy? Seriously though, we're really impressed with how fast he acted and asked him to call Mar's Dutch Doctor next week. The policy is a deposit of 39000USD for a consultation/evaluation...Crazy...On a positive note, they said we could pay with Credit Card...
Fingers crossed.
This center specializes in Haploidentical Stem Cell Transplantation which means they can take the siblings stemcells even if originally incompatible and work some kind of magic to adapt them to Mar's.
On the American front, Dr Kantarjian read Mar's medical summary and immediately responded with his suggested treatment...Just like that. His exact words being: "You could try clofarabine + ida + high dose araC or Fludara+ highdose araC + mylotarg". Can we get a prescription for that at our local farmacy? Seriously though, we're really impressed with how fast he acted and asked him to call Mar's Dutch Doctor next week. The policy is a deposit of 39000USD for a consultation/evaluation...Crazy...On a positive note, they said we could pay with Credit Card...
Wednesday 15 Apr - The Dutch Final Verdict
Mara was diagnosed last November with Acute Myeloid Leukemia (AML). After 3 chemotherapy treatments the plan was for her to receive a baby cord stem cell transplant as I was not a suitable donor and we were unable to find an unrelated adult match either.
Today, we met with her doctors. The chemo treatments administered did not suffice to induce full remission. Therefore according to Dutch Medical insights, Mara’s condition is no longer considered treatable in the Netherlands and she is no longer eligible for a transplant. It’s game over for the Dutch. Her doctor recommended 2 very well known clinics outside of the Netherlands, that are more liberal & experimental in treating her type of Leukemia:
- The University of Texas MD Anderson Cancer Center – Dr Kantarjian – USA
- Azienda Ospedaliera di Perugia – Dr Martelli - Italy
We are in the process of contacting both clinics and expect to set up appointments immediately.
Mara is her usual strong and spirited self!
Today, we met with her doctors. The chemo treatments administered did not suffice to induce full remission. Therefore according to Dutch Medical insights, Mara’s condition is no longer considered treatable in the Netherlands and she is no longer eligible for a transplant. It’s game over for the Dutch. Her doctor recommended 2 very well known clinics outside of the Netherlands, that are more liberal & experimental in treating her type of Leukemia:
- The University of Texas MD Anderson Cancer Center – Dr Kantarjian – USA
- Azienda Ospedaliera di Perugia – Dr Martelli - Italy
We are in the process of contacting both clinics and expect to set up appointments immediately.
Mara is her usual strong and spirited self!
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