For those not on Facebook - here is a photo from New Years Eve in New York City:
Test results continue to be good - AFP is down 13.5 which is wonderful!
Cheers.
Mari.
Wednesday, January 14, 2009
A new year in New York
Happy New Year everyone!
For those not on Facebook - here is a photo from New Years Eve in New York City:
Test results continue to be good - AFP is down 13.5 which is wonderful!
Cheers.
Mari.
For those not on Facebook - here is a photo from New Years Eve in New York City:
Test results continue to be good - AFP is down 13.5 which is wonderful!
Cheers.
Mari.
Wednesday, December 24, 2008
Merry Christmas
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.
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.
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.
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