Happy Holidays everyone!
I am happy to report that Nicolas had the stemcell transplant and everything went very well. His test numbers are looking good. A perfect Christmas gift.
Merry Christmas,
Mari.
Wednesday, December 24, 2008
Saturday, December 20, 2008
A visit to NYC
Hi.
Not a posting by Kathrin - but rather by Mari (her next door neighbour)
I happened to be driving down to the Big Apple for a couple of days of New York Christmas Spirit. The timing was perfect - I made the trip with Sophie, Sasha and Bella! We had a great (although looong) drive down on Wednesday. The kids were amazing patiently sitting through the 12 hour roadtrip. All worth it when the family was reunited! They'll be spending Christmas together in New York.
I just wanted to update those of you looking to help with the accommodation search that the problem has been solved. Kathrin and Sebastian have managed to arrange to stay at Ronald McDonald house for the duration. Thanks for all your thoughts and efforts!
Happy Holidays.
Mari.
Not a posting by Kathrin - but rather by Mari (her next door neighbour)
I happened to be driving down to the Big Apple for a couple of days of New York Christmas Spirit. The timing was perfect - I made the trip with Sophie, Sasha and Bella! We had a great (although looong) drive down on Wednesday. The kids were amazing patiently sitting through the 12 hour roadtrip. All worth it when the family was reunited! They'll be spending Christmas together in New York.
I just wanted to update those of you looking to help with the accommodation search that the problem has been solved. Kathrin and Sebastian have managed to arrange to stay at Ronald McDonald house for the duration. Thanks for all your thoughts and efforts!
Happy Holidays.
Mari.
Wednesday, December 10, 2008
More news from NYC
Nov. 25-Dec.3, 2008
Nicolas was moved from ICU on the evening of Nov.25 to the 4th floor transplant unit. This was around the time of the American Thanksgiving and that night there was a dinner for parents and family, too bad both Sebastian and Nicolas were still off solids...
Our days on the ward followed a pretty regular routine. Every morning since the surgery Nicolas had an ultra sound of his abdomen, always to check for good blood flow through the veins etc. He'd started all his medications (anti rejection, anti biotics, nutrional, blood thinners) up in ICU and we are getting the hang of it. The first week is critical, but it's not going to be for many weeks before things really are determined. Nicolas' liver function tests have seemed to be in the normal range so far. A constant tweaking of medication will be par for the course.
Sebastian was discharged on Thursday, Nov. 27 and his brother Pino and girlfriend Wincy arrived to look after him at the Ronald Mcdonald House. They were able to stay for 10 days and were a huge help, doing laundry, grocery shopping, cooking and driving Sebastian and myself to and fro through NYC traffic. It was wonderful to have a bit of home here in NYC, they were great company and it was amazing that they both could take the time off to be with us.
On the home front, our other children have the whole Glebe community looking out for them. Lynn is still managing to keep her head above the water, lovely meals come most nights, Sasha's social calendar is full and Sophie's is too full (keeping up with school work is never easy). Thanks to all our friends I'm not worrying about them (too much), we try to Skype as often as we can but there's no internet access in our room. Very frustrating.
We learned this week a little more about the upcoming stem cell transplant. The schedule is that Nicolas will have surgery on Dec. 7 to have 2 separate lines put in. One will be for the collection of stem cells (they want to have what are called rescue cells)m the other line will be used for the next 3 months for all of his bloodwork, IV meds, etc. He will be given a growth factor to stimulate new blood cells to develop before the collection.
Nicolas should be admitted on Dec.14 for the week of conditioning before the transplant. He'll have an intense dose of chemo to bring his immune system down so that it will accept the new one (Sebastian's). His dad will have also been given the growth factor and his collection takes place about 5 days before the transplant. If all goes to schedule Sebastian will be heading home to be with the other kids.
Unfortunately Nicolas will have to stay in hospital for a period of 30 days, without being able to leave his room. His immune system will be very compromised. When he heard this, he was naturally very upset, but in the meantime he's become more familiar with the idea and I think he'll be ok. At that point he'll be up in Oncology and the nurses and doctors are amazing there, they really make the patients a part of their family. Actually all the nurses, doctors, support people are great, but up in Oncology the nurses don't rotate as much and they really get to now the patients and families.
After the 30 days, Nicolas will have to stay in the New York area for an additional 2 months. We're looking into places for the months of February and March, big enough for the whole family to come down for extended visits. So I'm putting the word out, if anyone knows about apartments/houses in NYC (preferably) or within an hour drive of the hospital, I'd love to hear about it.
Lots of love and big hellos form the Big Apple, Kathrin, Nicolas and Sebastian!
Nicolas was moved from ICU on the evening of Nov.25 to the 4th floor transplant unit. This was around the time of the American Thanksgiving and that night there was a dinner for parents and family, too bad both Sebastian and Nicolas were still off solids...
Our days on the ward followed a pretty regular routine. Every morning since the surgery Nicolas had an ultra sound of his abdomen, always to check for good blood flow through the veins etc. He'd started all his medications (anti rejection, anti biotics, nutrional, blood thinners) up in ICU and we are getting the hang of it. The first week is critical, but it's not going to be for many weeks before things really are determined. Nicolas' liver function tests have seemed to be in the normal range so far. A constant tweaking of medication will be par for the course.
Sebastian was discharged on Thursday, Nov. 27 and his brother Pino and girlfriend Wincy arrived to look after him at the Ronald Mcdonald House. They were able to stay for 10 days and were a huge help, doing laundry, grocery shopping, cooking and driving Sebastian and myself to and fro through NYC traffic. It was wonderful to have a bit of home here in NYC, they were great company and it was amazing that they both could take the time off to be with us.
On the home front, our other children have the whole Glebe community looking out for them. Lynn is still managing to keep her head above the water, lovely meals come most nights, Sasha's social calendar is full and Sophie's is too full (keeping up with school work is never easy). Thanks to all our friends I'm not worrying about them (too much), we try to Skype as often as we can but there's no internet access in our room. Very frustrating.
We learned this week a little more about the upcoming stem cell transplant. The schedule is that Nicolas will have surgery on Dec. 7 to have 2 separate lines put in. One will be for the collection of stem cells (they want to have what are called rescue cells)m the other line will be used for the next 3 months for all of his bloodwork, IV meds, etc. He will be given a growth factor to stimulate new blood cells to develop before the collection.
Nicolas should be admitted on Dec.14 for the week of conditioning before the transplant. He'll have an intense dose of chemo to bring his immune system down so that it will accept the new one (Sebastian's). His dad will have also been given the growth factor and his collection takes place about 5 days before the transplant. If all goes to schedule Sebastian will be heading home to be with the other kids.
Unfortunately Nicolas will have to stay in hospital for a period of 30 days, without being able to leave his room. His immune system will be very compromised. When he heard this, he was naturally very upset, but in the meantime he's become more familiar with the idea and I think he'll be ok. At that point he'll be up in Oncology and the nurses and doctors are amazing there, they really make the patients a part of their family. Actually all the nurses, doctors, support people are great, but up in Oncology the nurses don't rotate as much and they really get to now the patients and families.
After the 30 days, Nicolas will have to stay in the New York area for an additional 2 months. We're looking into places for the months of February and March, big enough for the whole family to come down for extended visits. So I'm putting the word out, if anyone knows about apartments/houses in NYC (preferably) or within an hour drive of the hospital, I'd love to hear about it.
Lots of love and big hellos form the Big Apple, Kathrin, Nicolas and Sebastian!
Monday, December 8, 2008
Nicolas in ICU (Nov.22-Nov.25)
As you all know, Nicolas had a liver transplant on Nov.21. The surgery was lengthy, without complications and also included a reconstruction of the portal vein (using a piece of Nic's jugular vein). Now Nicolas has a portion of his dad's left liver lobe, which will develop over 6 weeks to a size which his body requires. Sebastian's liver will also grow back to it's needed size. The surgery took place on the eve of Nicolas' 12th birthday, you could say that both his parents gave birth to him...
Nicolas spent the first few days in ICU, he arrived with all the many lines that are necessary for surgery. He was wide awake on the morning of the 22nd and was so frustrated because he couldn't talk. Luckily the first thing to be removed was the ventilator tube, but at first he tried to communicate by writing. I have told him for years to work on improving his handwriting, with
the added effects of the drugs, it was incomprehensible.
My little guy was hooked up to monitors, but within short order he was trying his hand at the laptop. His biggest challenge was not being allowed to eat or drink for the next 5 days! For the first 2 days he was in agony, begging me for food and drink. Nicolas has never had a great appetite in his life, it was almost refreshing to hear him crying out for food. All he could have was small amounts of ice chips. Nicolas would not be given food for 5 days. This was in
order to wait for his bowels and the new veins to heal.
Nicolas' liver surgeon, Dr. Kato, is a careful, considerate, conservative and caring man. He came each day to see him, and continues to monitor everything very closely. All the surgeons, physicians, RNs and external team members from liver, bone marrow and oncology follow Nicolas meticulously. One of the hardest jobs I have is to keep the teams straight. In ICU Nicolas had a visit from dad, who arrived from the adult side of the hospital in a wheel chair. Sebastian was feeling quite wiped, and he spent most of his time on his own, sleeping. He was happy to just keep to himself, the nursing care was good but he hated the constant beeping and intrusions from doctors and nurses.
That said, we have nothing but praise for both hospital and for all the people who have worked with Nic.
Nicolas spent the first few days in ICU, he arrived with all the many lines that are necessary for surgery. He was wide awake on the morning of the 22nd and was so frustrated because he couldn't talk. Luckily the first thing to be removed was the ventilator tube, but at first he tried to communicate by writing. I have told him for years to work on improving his handwriting, with
the added effects of the drugs, it was incomprehensible.
My little guy was hooked up to monitors, but within short order he was trying his hand at the laptop. His biggest challenge was not being allowed to eat or drink for the next 5 days! For the first 2 days he was in agony, begging me for food and drink. Nicolas has never had a great appetite in his life, it was almost refreshing to hear him crying out for food. All he could have was small amounts of ice chips. Nicolas would not be given food for 5 days. This was in
order to wait for his bowels and the new veins to heal.
Nicolas' liver surgeon, Dr. Kato, is a careful, considerate, conservative and caring man. He came each day to see him, and continues to monitor everything very closely. All the surgeons, physicians, RNs and external team members from liver, bone marrow and oncology follow Nicolas meticulously. One of the hardest jobs I have is to keep the teams straight. In ICU Nicolas had a visit from dad, who arrived from the adult side of the hospital in a wheel chair. Sebastian was feeling quite wiped, and he spent most of his time on his own, sleeping. He was happy to just keep to himself, the nursing care was good but he hated the constant beeping and intrusions from doctors and nurses.
That said, we have nothing but praise for both hospital and for all the people who have worked with Nic.
Friday, November 28, 2008
OHIP has come through!
I'm thrilled to report that OHIP has agreed to pay for the medical costs related to Nicky's surgery!
Many of you have been asking how you might be able to contribute to the costs - I'm happy to report that is no longer as big a concern for them. That being said, we have set up a trust account for those additional expenses - travel, living in NYC, supporting the family at home and potentially some of the required medications. For those of you who are keen to do something, you can send a cheque made out to 'Nicolas Spano Trust' to me and I will make the deposit at RBC. We did try and arrange for tax receipts but were unsuccessful. For further details I can be contacted at mari.teitelbaum@gmail.com.
In light of the changes, the fundraiser at InFusion has been canceled.
Also a quick update from NYC - I heard today from Kathrin that "...things are looking very good, Nic will be discharged in a few days"
Thanks for all your concern!
Mari.
Many of you have been asking how you might be able to contribute to the costs - I'm happy to report that is no longer as big a concern for them. That being said, we have set up a trust account for those additional expenses - travel, living in NYC, supporting the family at home and potentially some of the required medications. For those of you who are keen to do something, you can send a cheque made out to 'Nicolas Spano Trust' to me and I will make the deposit at RBC. We did try and arrange for tax receipts but were unsuccessful. For further details I can be contacted at mari.teitelbaum@gmail.com.
In light of the changes, the fundraiser at InFusion has been canceled.
Also a quick update from NYC - I heard today from Kathrin that "...things are looking very good, Nic will be discharged in a few days"
Thanks for all your concern!
Mari.
Saturday, November 22, 2008
Day of Surgery
Day of Surgery, November 21, 2008
After a very short night, Sebastian and I woke up at 5 am, Sebastian had to get to his appointment by 5:45 am. We left the children's hospital (and Nicolas still asleep) and took the short cut across the park to the adult hospital. It was so early that the gates of the park were still locked...no time to go around, so we hopped the big old wall! Sebastian had just passed the donor screening process with flying colours of course!
I left Sebastian at about 6:15 am in order to be back for Nic's pre op prep. Sebastian handed me his worldly goods (ie his Cartier watch), I kissed him goodbye and full of hope I headed to collect Nicolas. The sense of excitement that I felt, kept me from worrying. The day that we had been waiting so long for had finally arrived.
Nicolas' porter arrived at 7:15 to take him over to the operating area. (Both Nicolas and Sebastian's procedures occurred in two different buildings, both on the 4th floor, connected by a bridge). We spent the first several hours in a transitional room where surgeons, nurses etc. gowned up. We had plenty of company, everyone greeting us, stopping to chat with Nicolas, especially about US politics. Evelien, a good friend of mine from Ottawa, arrived at about 9 am. Nicolas was unbelievably relaxed and enjoyed opening the many birthday presents Evelien brought. (Many thanks to all the generous gift givers!!!!!)
Just before 10 am, Nicolas and I were taken to the operating room, I stayed with him until he fell into his induced sleep...he laughed first, then gagged and boom, his eyes shut tightly.
My dad arrived shortly thereafter and the 3 of us set about waiting for news. Our friend Lucille, who had been keeping Sebastian company since 8:30 am, eventually met us at about 11 am to tell us that the operation was underway. The surgeons had opened Nicolas up and found that all was stable, they then proceeded to operate on Nicolas. It was at about 2 pm that Sebastian's liver was transported to Nic's surgeons. Sebastian was done by 4 pm, I saw him at around 5:30, pumped full of pain meds, but happy to hear that all was going well with Nic.
Our group got a little larger with the arrival of my friend Jessica from Guelph. We made a temporary camp in the ICU waiting room, having coffee, lunch and eventually dinner there. Occasional updates about Nicolas came through, all good news; the team here has been amazing, we are well looked after in every respect. The RN's, the surgeons, the medical team have been with us every step of the way, full of respect, caring and in constant communication.
Finally at 10 pm one of the surgeons arrived to tell us that Nicolas was on his way up to ICU. Absolutely everything during the surgery went off without a hitch. The liver was invaded by massive tumours but appeared to be contained only in the liver. The portal vein had a large blood clot in it which blocked the tumour from reaching the bowels. No apparent nodules or lumps in the bowel. Microscopic tumour is still the concern. the stem cell transplant will occur anywhere between 2-4 weeks from now, depending on Nic's recovery.
I am able to sleep with NIc in ICU and even with all the beeps, lights and constant vigilance of staff, I know I'll sleep. Nicolas is looking so good, my baby has come through, but the next week will be critical.
Kathrin.
After a very short night, Sebastian and I woke up at 5 am, Sebastian had to get to his appointment by 5:45 am. We left the children's hospital (and Nicolas still asleep) and took the short cut across the park to the adult hospital. It was so early that the gates of the park were still locked...no time to go around, so we hopped the big old wall! Sebastian had just passed the donor screening process with flying colours of course!
I left Sebastian at about 6:15 am in order to be back for Nic's pre op prep. Sebastian handed me his worldly goods (ie his Cartier watch), I kissed him goodbye and full of hope I headed to collect Nicolas. The sense of excitement that I felt, kept me from worrying. The day that we had been waiting so long for had finally arrived.
Nicolas' porter arrived at 7:15 to take him over to the operating area. (Both Nicolas and Sebastian's procedures occurred in two different buildings, both on the 4th floor, connected by a bridge). We spent the first several hours in a transitional room where surgeons, nurses etc. gowned up. We had plenty of company, everyone greeting us, stopping to chat with Nicolas, especially about US politics. Evelien, a good friend of mine from Ottawa, arrived at about 9 am. Nicolas was unbelievably relaxed and enjoyed opening the many birthday presents Evelien brought. (Many thanks to all the generous gift givers!!!!!)
Just before 10 am, Nicolas and I were taken to the operating room, I stayed with him until he fell into his induced sleep...he laughed first, then gagged and boom, his eyes shut tightly.
My dad arrived shortly thereafter and the 3 of us set about waiting for news. Our friend Lucille, who had been keeping Sebastian company since 8:30 am, eventually met us at about 11 am to tell us that the operation was underway. The surgeons had opened Nicolas up and found that all was stable, they then proceeded to operate on Nicolas. It was at about 2 pm that Sebastian's liver was transported to Nic's surgeons. Sebastian was done by 4 pm, I saw him at around 5:30, pumped full of pain meds, but happy to hear that all was going well with Nic.
Our group got a little larger with the arrival of my friend Jessica from Guelph. We made a temporary camp in the ICU waiting room, having coffee, lunch and eventually dinner there. Occasional updates about Nicolas came through, all good news; the team here has been amazing, we are well looked after in every respect. The RN's, the surgeons, the medical team have been with us every step of the way, full of respect, caring and in constant communication.
Finally at 10 pm one of the surgeons arrived to tell us that Nicolas was on his way up to ICU. Absolutely everything during the surgery went off without a hitch. The liver was invaded by massive tumours but appeared to be contained only in the liver. The portal vein had a large blood clot in it which blocked the tumour from reaching the bowels. No apparent nodules or lumps in the bowel. Microscopic tumour is still the concern. the stem cell transplant will occur anywhere between 2-4 weeks from now, depending on Nic's recovery.
I am able to sleep with NIc in ICU and even with all the beeps, lights and constant vigilance of staff, I know I'll sleep. Nicolas is looking so good, my baby has come through, but the next week will be critical.
Kathrin.
Friday, November 21, 2008
Surgery is Done!
I just heard from Sophie that the surgery is done - after 11 hours. Nicolas and Sebastian are doing well.
Mari.
Mari.
Thursday, November 20, 2008
To Post a Comment ...
Some of you have had trouble posting comments.
Try this ....
Click 'Comments' at the bottom of the blog text
Type in your comment (be sure to sign your name)
Select 'Anonymous' from the 'Post Comment As:' list
Then click Post to publish your thoughts.
Understand that anyone coming to the blog can read your comments - not just the Spanos.
I can be reached at mari.teitelbaum@gmail.com if you need further help.
Cheers,
Mari.
Try this ....
Click 'Comments' at the bottom of the blog text
Type in your comment (be sure to sign your name)
Select 'Anonymous' from the 'Post Comment As:' list
Then click Post to publish your thoughts.
Understand that anyone coming to the blog can read your comments - not just the Spanos.
I can be reached at mari.teitelbaum@gmail.com if you need further help.
Cheers,
Mari.
Updates from the Big Apple
Thursday, November 20, 2008
We're on our way to the hospital (actually Sebastian and Nicolas are still in bed)...all our bags are packed and Nicolas should be admitted by about 11 am. Both men had a restless sleep.
Thursday, November 13, 2008
It was only days ago when we got the word that we could start the screening process at Presbyterian Hospital in NYC. With the tremendous support of our Ottawa friends and family near and far we were able to get ourselves on the road fairly quickly. Sophie, Sasha and Bella are with Lynn at home, all our pets (dog, rat, bird, hamster, fish) have been sent to foster homes. The eyes of the Glebe are watching out for the family while we're away and it is allowing us to prepare Nicolas for the days ahead.
A nine hour drive to New York, with a car packed full of as much of Ottawa as we could bring, ended at Lucille and Richard's house in Westchester, just outside NYC. Nicolas had to put up with mom and dad losing their minds over directions at the last stretch. Notable moments included losing the gas cap somewhere around Marathon, (but finding a similarly abandoned one at our next stop). Nicolas kept amused by listening to Kiss (newly discovered by him and now his favorite band). Sebastian did a fantastic job of driving through almost four hours of fog.
Lucille and Richard have given us a home for the week before the surgery and we are so thankful for how they've opened up their hearts and home to us.
goodnight for now, Kathrin
Friday, November 14, 2008
After a short night, we had to get ourselves on the road for our first visit to Presbyterian Hospital. We left at 7:30 am and caught the commuter traffic into the city. Nicolas was fairly relaxed on the way down. When we got to the hospital we dropped the car off with the valet. This is one of the coolest jobs, according to Nicolas. He loves cars and at one point he thought being a valet would be quite a great thing to do. Now he talks of becoming a race car driver and he's fixated on one day owning an AMX 3 (I believe that's what it's calle) and apparently there are only about 9 in the whole world.
Sebastian and I are being screened as potential donors for the living donor liver transplant. Sebastian has put himself as first choice but that will be up to the results. Today it was bloodwork, EKG and chest xrays for both of us, bloodwork for Nicolas, ECG for Sebastian and meetings with the liver surgeon, nurse practioners, other physicians, hepatoligist and nutrionist. Everyone has been amazing, keeping us on track, helping us to find our way and really caring about us and Nicolas. It looks like they want to focus primarily on Sebastian as the donor.
Nicolas kept himself amused today with his laptop, listening to Kiss and checking out a few other 70's heavy metal bands on you tube. He loves 70's music, cars and lifestyle. He just can't get over how people were so seriously into bands like Kiss. That people actually were so into the whole thing just amazes him. He loves to dress himself rather creatively so he must feel a kinship with those guys (his favorite one is Spaceman).
When our day finally ended by about 5:30 pm Nicolas had a craving for Burger King. We pulled up onto Broadway, pulled into a really seedy garage and asked for directions. A guy saw me looking around and helped me with the location of a BK. Nicolas described him as looking like "the kind of guy who might want to mug you". We've found all the New Yorkers we've met to be really friendly.
At about 7:30 we were back at Lucille and Richard's for another amazing dinner. It was a 12 hour day and with little time to really reflect on the day's events it's time to sleep.
Saturday, November 15, 2008
It was great to wake up today and not have to get to an appointment (or 7 appointments). We tried to sleep in, but we're still too wired from the driving and yesterday's busy schedule. These two days are going to be just for rest.
Sebastian and I have been introduced into the joys of Skyping, it's been an amazing for all of us to see Lynn, Sophie, Sasha and Bella and for Nicolas to see his friends. Sasha had big tears running down his face tonight when he spoke with us, it was so sweet to see Nicolas trying to console his little brother. They ended up talking for a long time, distance really does make the heart grow fonder.
Sunday, November 16, 2008
Another good day to try to catch up on what the kids are doing in Ottawa, Sasha has been quite the social butterfly and Sophie too. Bella looks and is quite content. She and Lynn share Nicolas' bed each night, snuggling together and Bella's even been sleeping in. She never does that for me. Sophie and Sasha are camping out in our room, Sophie has been reading to him every night.
Nicolas has been finding it hard to be away of course, he's only got his parents and we're not as much fun as his bunch of friends. He just wants to be home. Thanks goodness for Family Guy, it can really bring him out of his sadness. I love to just sit with him, sifting through 70's and 80's detritus on the net. This bonding over a generation that I found so embarassing has given me new pride about my past (big hair, ugly fashions, leggings, etc.).
goodnight again, Kathrin
Monday, November 17, 2008
On the road again! More appointments...a stress test for Sebastian, where he met an Italian doctor who had moved here from Rome with his family. The whole procedure was conducted in Italian. He passed the tests with flying colours, he's amazing!! Superdad of the Year!! Nicolas' surgery is scheduled for November 21, the day before his 12th birthday, I don't think Sebastian could ever give him a better gift. One of my friends commented that I birthed Nicolas but Sebastian will be rebirthing him. (Nicolas would probably find this all quite icky).
While Sebastian was getting his stress quantified, Nicolas and I drove the Honda into the depths of the city. We went south on Broadway and kind of turned left at some point ending up at what we thought was Central Park. It was actually Morningside Park. We needed to stretch our legs so we parked on Morningside, organised what we wanted to take with us form the car and then stepped outside. While we had been doing so I had also noticed that a man in a car parked in front of us had been keeping a keen eye on us through his rear view mirror. As soon as we were on the sidewalk, he started to get out too. I told Nicolas to get back in the car, I had a creepy feeling about the guy. We took off, burning rubber and Nicolas thought it was so cool that we'd almost been mugged.
We met up with Sebastian again at the hospital, more meetings with doctors, surgeons and social worker. Nicolas and I finally caught a late lunch and ran into an"old" friend of ours. Mike Wickett is the manager of food services of the hospital. We met him in September when we were in NYC for consults. He gave us a stash of food vouchers at the time. So when Nicolas and I recognised him in the elevator I struck up a conversation with him, he remembered us too. He spent quite a bit of time talking with us and he even gave us his cell number if we ever needed his help. I can't believe how fantastic everyone at this place is. While waiting for our car to be brought up in the evening, Nicolas met a really old grand dame in the lobby. She must have been in her late 80's, she was interested in his Canadianess and knew quite a bit about our country. She had lots of stuff on Pierre Trudeau and his politics. She and Nicolas had quite the conversation. I love seeing how a young person can make a connection with an older person.
It was another emotional day with no energy left to discuss what really went on. This whole thing is like taking a big plunge into a big bowl of trust.
Tuesday, November 18, 2008
Both Nicolas and Sebastian had to be NPO (no food or drink since midnight). Nicolas had to have the dreaded CT scan, it's horrible because he had to drink a bucket of contrast dye. He managed to only have a small glass, the whole ordeal took 4 hours. When he came out of the room he had a big smile on his face, it's amazing what stickers can do. We met up with Sebastian who was recovering from his procedure; he'd been under anasthetic and so I had to accompany him to his next appointment. It was then I realised that I'd missed a consult with the ENT, so this really nice man, another Mike, helped me to get in to still see Dr. Caruana ( a Sicilian). Thanks Mike! I love how cooll New Yorkers are, he really schmoozed all the receptionists and even escorted Nicolas and I up to the doc's office.
During our appointment Sebastian had to go downtown to E55th for an MRI.
I had to convince the valet service to release my car to me without the receipt, I had to identify everything in my messy car to prove that it was mine. I was able to prove that I was the owner of a rusty, 1996 Honda Odyssey containing a large stuffed cow, a sleeping bag, plaid pillows and lots of food wrappers littering the floor.
My greatest achievement is that I was able to actually conduct myself through New York traffic all the way down Broadway, through Central park, across 5th to 2nd and E55th in pretty good time. It helped that Nicolas and I had driven all the way down to Chinatown the day before. I also learned that my car is actually quite flexible, when you drive down there, cars really do a kind of ballet with other cars, pedestrians and cyclists. The Honda just wove in and out like a sleek dreamy weavy thang.
We were back in Westchester, at Lucille and Richard's, for another relaxing evening in their good company. Tomorrow no appointments for us.
Wednesday, November 19, 2008
Unfortunately Sebastian had to run into town for one last bloodwork. It's an hour drive, but we're getting used to it, almost like real commuters. We're staying in a beautiful area called Westchester. It's a collection of small villages set in the mountains. It feels sort of like the Lake district in England. Stone walls, narrow curving roads, sweet little cottages (it used to be cottage country for New Yorkers) and beautiful trees. Nicolas and I stayed here and went shopping with Lucille for some treats to send home to Sasha and Sophie. (it's a surprise) Lucille is a very good cook and prepared a delicious chicken cacciatore. Our last home coooked meal for a while. Lucille and Richard gave us a place to rest between busy days, lots of emotional support and we love them.
The beauty and goodness of people astounds me every day. It's late and I'm feeling tired, but I'm sustained by all the good thoughts, wishes, prayers and love that comes our way.
We're on our way to the hospital (actually Sebastian and Nicolas are still in bed)...all our bags are packed and Nicolas should be admitted by about 11 am. Both men had a restless sleep.
Thursday, November 13, 2008
It was only days ago when we got the word that we could start the screening process at Presbyterian Hospital in NYC. With the tremendous support of our Ottawa friends and family near and far we were able to get ourselves on the road fairly quickly. Sophie, Sasha and Bella are with Lynn at home, all our pets (dog, rat, bird, hamster, fish) have been sent to foster homes. The eyes of the Glebe are watching out for the family while we're away and it is allowing us to prepare Nicolas for the days ahead.
A nine hour drive to New York, with a car packed full of as much of Ottawa as we could bring, ended at Lucille and Richard's house in Westchester, just outside NYC. Nicolas had to put up with mom and dad losing their minds over directions at the last stretch. Notable moments included losing the gas cap somewhere around Marathon, (but finding a similarly abandoned one at our next stop). Nicolas kept amused by listening to Kiss (newly discovered by him and now his favorite band). Sebastian did a fantastic job of driving through almost four hours of fog.
Lucille and Richard have given us a home for the week before the surgery and we are so thankful for how they've opened up their hearts and home to us.
goodnight for now, Kathrin
Friday, November 14, 2008
After a short night, we had to get ourselves on the road for our first visit to Presbyterian Hospital. We left at 7:30 am and caught the commuter traffic into the city. Nicolas was fairly relaxed on the way down. When we got to the hospital we dropped the car off with the valet. This is one of the coolest jobs, according to Nicolas. He loves cars and at one point he thought being a valet would be quite a great thing to do. Now he talks of becoming a race car driver and he's fixated on one day owning an AMX 3 (I believe that's what it's calle) and apparently there are only about 9 in the whole world.
Sebastian and I are being screened as potential donors for the living donor liver transplant. Sebastian has put himself as first choice but that will be up to the results. Today it was bloodwork, EKG and chest xrays for both of us, bloodwork for Nicolas, ECG for Sebastian and meetings with the liver surgeon, nurse practioners, other physicians, hepatoligist and nutrionist. Everyone has been amazing, keeping us on track, helping us to find our way and really caring about us and Nicolas. It looks like they want to focus primarily on Sebastian as the donor.
Nicolas kept himself amused today with his laptop, listening to Kiss and checking out a few other 70's heavy metal bands on you tube. He loves 70's music, cars and lifestyle. He just can't get over how people were so seriously into bands like Kiss. That people actually were so into the whole thing just amazes him. He loves to dress himself rather creatively so he must feel a kinship with those guys (his favorite one is Spaceman).
When our day finally ended by about 5:30 pm Nicolas had a craving for Burger King. We pulled up onto Broadway, pulled into a really seedy garage and asked for directions. A guy saw me looking around and helped me with the location of a BK. Nicolas described him as looking like "the kind of guy who might want to mug you". We've found all the New Yorkers we've met to be really friendly.
At about 7:30 we were back at Lucille and Richard's for another amazing dinner. It was a 12 hour day and with little time to really reflect on the day's events it's time to sleep.
Saturday, November 15, 2008
It was great to wake up today and not have to get to an appointment (or 7 appointments). We tried to sleep in, but we're still too wired from the driving and yesterday's busy schedule. These two days are going to be just for rest.
Sebastian and I have been introduced into the joys of Skyping, it's been an amazing for all of us to see Lynn, Sophie, Sasha and Bella and for Nicolas to see his friends. Sasha had big tears running down his face tonight when he spoke with us, it was so sweet to see Nicolas trying to console his little brother. They ended up talking for a long time, distance really does make the heart grow fonder.
Sunday, November 16, 2008
Another good day to try to catch up on what the kids are doing in Ottawa, Sasha has been quite the social butterfly and Sophie too. Bella looks and is quite content. She and Lynn share Nicolas' bed each night, snuggling together and Bella's even been sleeping in. She never does that for me. Sophie and Sasha are camping out in our room, Sophie has been reading to him every night.
Nicolas has been finding it hard to be away of course, he's only got his parents and we're not as much fun as his bunch of friends. He just wants to be home. Thanks goodness for Family Guy, it can really bring him out of his sadness. I love to just sit with him, sifting through 70's and 80's detritus on the net. This bonding over a generation that I found so embarassing has given me new pride about my past (big hair, ugly fashions, leggings, etc.).
goodnight again, Kathrin
Monday, November 17, 2008
On the road again! More appointments...a stress test for Sebastian, where he met an Italian doctor who had moved here from Rome with his family. The whole procedure was conducted in Italian. He passed the tests with flying colours, he's amazing!! Superdad of the Year!! Nicolas' surgery is scheduled for November 21, the day before his 12th birthday, I don't think Sebastian could ever give him a better gift. One of my friends commented that I birthed Nicolas but Sebastian will be rebirthing him. (Nicolas would probably find this all quite icky).
While Sebastian was getting his stress quantified, Nicolas and I drove the Honda into the depths of the city. We went south on Broadway and kind of turned left at some point ending up at what we thought was Central Park. It was actually Morningside Park. We needed to stretch our legs so we parked on Morningside, organised what we wanted to take with us form the car and then stepped outside. While we had been doing so I had also noticed that a man in a car parked in front of us had been keeping a keen eye on us through his rear view mirror. As soon as we were on the sidewalk, he started to get out too. I told Nicolas to get back in the car, I had a creepy feeling about the guy. We took off, burning rubber and Nicolas thought it was so cool that we'd almost been mugged.
We met up with Sebastian again at the hospital, more meetings with doctors, surgeons and social worker. Nicolas and I finally caught a late lunch and ran into an"old" friend of ours. Mike Wickett is the manager of food services of the hospital. We met him in September when we were in NYC for consults. He gave us a stash of food vouchers at the time. So when Nicolas and I recognised him in the elevator I struck up a conversation with him, he remembered us too. He spent quite a bit of time talking with us and he even gave us his cell number if we ever needed his help. I can't believe how fantastic everyone at this place is. While waiting for our car to be brought up in the evening, Nicolas met a really old grand dame in the lobby. She must have been in her late 80's, she was interested in his Canadianess and knew quite a bit about our country. She had lots of stuff on Pierre Trudeau and his politics. She and Nicolas had quite the conversation. I love seeing how a young person can make a connection with an older person.
It was another emotional day with no energy left to discuss what really went on. This whole thing is like taking a big plunge into a big bowl of trust.
Tuesday, November 18, 2008
Both Nicolas and Sebastian had to be NPO (no food or drink since midnight). Nicolas had to have the dreaded CT scan, it's horrible because he had to drink a bucket of contrast dye. He managed to only have a small glass, the whole ordeal took 4 hours. When he came out of the room he had a big smile on his face, it's amazing what stickers can do. We met up with Sebastian who was recovering from his procedure; he'd been under anasthetic and so I had to accompany him to his next appointment. It was then I realised that I'd missed a consult with the ENT, so this really nice man, another Mike, helped me to get in to still see Dr. Caruana ( a Sicilian). Thanks Mike! I love how cooll New Yorkers are, he really schmoozed all the receptionists and even escorted Nicolas and I up to the doc's office.
During our appointment Sebastian had to go downtown to E55th for an MRI.
I had to convince the valet service to release my car to me without the receipt, I had to identify everything in my messy car to prove that it was mine. I was able to prove that I was the owner of a rusty, 1996 Honda Odyssey containing a large stuffed cow, a sleeping bag, plaid pillows and lots of food wrappers littering the floor.
My greatest achievement is that I was able to actually conduct myself through New York traffic all the way down Broadway, through Central park, across 5th to 2nd and E55th in pretty good time. It helped that Nicolas and I had driven all the way down to Chinatown the day before. I also learned that my car is actually quite flexible, when you drive down there, cars really do a kind of ballet with other cars, pedestrians and cyclists. The Honda just wove in and out like a sleek dreamy weavy thang.
We were back in Westchester, at Lucille and Richard's, for another relaxing evening in their good company. Tomorrow no appointments for us.
Wednesday, November 19, 2008
Unfortunately Sebastian had to run into town for one last bloodwork. It's an hour drive, but we're getting used to it, almost like real commuters. We're staying in a beautiful area called Westchester. It's a collection of small villages set in the mountains. It feels sort of like the Lake district in England. Stone walls, narrow curving roads, sweet little cottages (it used to be cottage country for New Yorkers) and beautiful trees. Nicolas and I stayed here and went shopping with Lucille for some treats to send home to Sasha and Sophie. (it's a surprise) Lucille is a very good cook and prepared a delicious chicken cacciatore. Our last home coooked meal for a while. Lucille and Richard gave us a place to rest between busy days, lots of emotional support and we love them.
The beauty and goodness of people astounds me every day. It's late and I'm feeling tired, but I'm sustained by all the good thoughts, wishes, prayers and love that comes our way.
Thursday, November 13, 2008
On their way to New York
Nicolas (with Kathrin and Sebastien) is leaving for New York City today where he will be going through many tests before the actual transplant surgery which is scheduled for November 21st - the day before his birthday!
We will continue to post updates as information comes available. Your thoughts and support are appreciated!
We will continue to post updates as information comes available. Your thoughts and support are appreciated!
Wednesday, October 22, 2008
Nicolas needs your help !!!
This is Nicolas Spano. He is 11 years old.
On February 7th 2008 he was diagnosed with Hepato-Cellular Carcinoma (HCC). HCC is a very rare disease (1.5 in 1,000.000 cases in children under 15 years of age) in which cancer cells develop in the tissue of the liver and form a tumor.
Scans and examinations also revealed that the cancer had spread to one of the lungs. Chemotherapy has been administered to Nicolas for the last 8 months to help shrink the size of the tumors in the lung and the liver. But it has become apparent that only a liver transplant can save his life. Unfortunately Sick Kids Hospital in Toronto decided that Nicolas is not a candidate for an ordinary liver transplant, as the cancer has already spread to the lungs. Nicolas is considered a stage 4 cancer patient.
The family desperately started to look for other options and was brought into contact with a surgeon at Columbia University in New York City. He is proposing a unique double procedure that has never been performed before: a liver transplant as well as a bonemarrow/stem-cell transplant. For Nicolas and his family this is the most hopeful option. The operation is scheduled for November. One of his parents will be the living donor, and it is expected that Nicolas will be kept in hospital in NYC for several months. Because of the unprecedented nature of this procedure, OHIP have declined to finance Nicolas’ operation.
Nicolas’ parents are Kathrin von Dehn and Sebastian Spano. They have four children: Sophie (16), Nicolas (11), Sasha (9) and Isabella (1). They have lived in the Glebe since July 2002. Nicolas is a sensitive, caring boy who loves animals, little kids, reading and politics. He likes cars and driving…. but only golf carts for now! He loves attending hockey games and collects hockey cards. He eschews the traditional clothing of an adolescent boy and prefers to deconstruct clothes, and wears fedora hats.
Throughout his illness he has shown amazing strength and courage.
On behalf of Nicolas and his family, Thank you for caring.
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