We have been approached by many of you who are worried about the children and want to set up a fund to help make sure that they are able to go to college and achieve all that Nick was able to achieve in his life. I'm writing this to assure each of you that the kids will be well taken care of in the years to come.
All three children have GET (Guaranteed Education Tuition) accounts that have been well-funded by their grandpa Larry. They are also eligible for Nick's social security benefit, and I have great plans to invest that money for them so that when they graduate from college, they will have nice little sum that could go towards their first home, or to help start their own families.
If you are interested in contributing something to Nick's family, we would love to have you give to the Nick Whiton Scholarship Fund.
NICK WHITON SCHOLARSHIP FUND
c/o Kathy Williams
Burlington-Edison Education and Alumni Foundation
PO Box 350
Burlington, WA 98233
We think it would be such a tribute to Nick to forever be a part of the Burlington Edison School District.
However, if you would rather contribute to a family in need (in Libby and Darian's name), the Bethany Covenant Preschool Scholarship Fund would appreciate your donation. This is a wonderful preschool and I can't say enough about the love of the teachers and families there who have helped us through this time.
Of course, thank you to all who have already donated to the Nick Whiton Scholarship Fund. We have a special treat that we plan to send out as a thank you that we think you will really like.
Sandra
Thursday, May 7, 2009
Monday, May 4, 2009
Videos of Nick
To Everyone,
Thank you so much for coming on Saturday.
It was wonderful to see so many people honor Nick's life.
Here are a few videos we wanted to share with you. The first one, Nick took of himself the day that he was diagnosed, and the second one is from the Pep Rally last Saturday.
1. Nick on the day of diagnosis -- February 28th, 2009
2. Nick's PEP RALLY last Saturday -- April 25th, 2009
Thank you again for your love, prayers and support.
We are so grateful.
Thank you so much for coming on Saturday.
It was wonderful to see so many people honor Nick's life.
Here are a few videos we wanted to share with you. The first one, Nick took of himself the day that he was diagnosed, and the second one is from the Pep Rally last Saturday.
1. Nick on the day of diagnosis -- February 28th, 2009
2. Nick's PEP RALLY last Saturday -- April 25th, 2009
Thank you again for your love, prayers and support.
We are so grateful.
Tuesday, April 28, 2009
Remembering Nick
Nick's memorial service will be held on:
Saturday, May 2nd at 2:00 pm
Bethany Covenant Church
1318 S. 18th Street
Mt. Vernon, WA 98273
We will be playing a slide show of pictures from Nick's life starting at 1:45 pm, which will also be shown during the reception after the service.
In lieu of flowers, our family suggests that donations be made to:
NICK WHITON SCHOLARSHIP FUND
c/o Kathy Williams
Burlington-Edison Education and Alumni Foundation
PO Box 350
Burlington, WA 98233
An additional fund is being established for Libby and Darian for their educational future through Bethany Covenant Church. More details will be announced about this shortly.
Arrangements are under the care of Hawthorne Funeral Home, Mt. Vernon, WA.
We invite you to share memories of our Nick and sign the online guest register at:
http://www.hawthornefuneralhm.com/index.cfm
Saturday, May 2nd at 2:00 pm
Bethany Covenant Church
1318 S. 18th Street
Mt. Vernon, WA 98273
We will be playing a slide show of pictures from Nick's life starting at 1:45 pm, which will also be shown during the reception after the service.
In lieu of flowers, our family suggests that donations be made to:
NICK WHITON SCHOLARSHIP FUND
c/o Kathy Williams
Burlington-Edison Education and Alumni Foundation
PO Box 350
Burlington, WA 98233
An additional fund is being established for Libby and Darian for their educational future through Bethany Covenant Church. More details will be announced about this shortly.
Arrangements are under the care of Hawthorne Funeral Home, Mt. Vernon, WA.
We invite you to share memories of our Nick and sign the online guest register at:
http://www.hawthornefuneralhm.com/index.cfm
Sunday, April 26, 2009
Sunday Morning
We cannot thank you all enough for being with us yesterday afternoon as we celebrated Nick's life with him - with song, cheer, memories, balloons and most of all - overwhelming love.
We are so sorry to let all of you know that our precious Nick passed this morning at 7:50 am, while he was sleeping. His passing was without pain, anxiety or struggle, just beautifully peaceful.
Please join us for a memorial service on Saturday, May 2nd at Bethany Covenant Church in Mt. Vernon at 2pm.
With love,
Sandra, Ron, Patsy and Michal
We are so sorry to let all of you know that our precious Nick passed this morning at 7:50 am, while he was sleeping. His passing was without pain, anxiety or struggle, just beautifully peaceful.
Please join us for a memorial service on Saturday, May 2nd at Bethany Covenant Church in Mt. Vernon at 2pm.
With love,
Sandra, Ron, Patsy and Michal
Friday, April 24, 2009
Pep Rally for Nick
Hello to All!
It's a beautiful Friday. Nick is resting peacefully right now. He was up this morning for almost 2 hours, talking with us and meeting with the hospice nurse. He seemed to look better this morning to all of us, but he told us that he probably looks better than he feels.
Thank you to Kristen Warren who started Team Nick on Facebook. I showed it to Nick this morning and read many of the posts to him, and he loved it. He smiled at the old pictures from our days at Edison Elementary, and remembered people's names on the soccer team photo that I had forgotten!
I told him that many people from Team Nick would like to come over tomorrow and wish him well and he thought that would be great. His only worry was that he will not have the energy to talk to everyone.
Times like these are pretty extraordinary, so we have a wild idea:
A PEP RALLY!
At 2 - 2:30pm, we would like to gather everyone in Nick's front yard and out in the street if needed.
We would like everyone to bring one bright colored HELIUM BALLOON (if possible!) and/or a sign that says something encouraging.
At 3pm, we are going to bring Nick out on his deck in front of the house in his very cool new wheelchair.
At that time, we will all do a cheer for him, like:
We love you Nick! We love you Nick! We love you Nick!
(as many times as we want...)
And at the end of the cheer - we thought everyone could release their balloon into the air.
We will have a microphone set up in the yard. So, after the cheer - if anyone would like to tell:
- a favorite memory
- a funny story
- a poem
- or even sing a song...
WHATEVER YOU ARE INSPIRED TO DO, we think Nick will absolutely love this.
And he will probably be ready to rest again around 4pm.
Since parking will be limited here, we suggest going up Division past Haggen's and turning right on Leann Street (which is directly across from Sioux) and parking in the newly created subdivision, which is full of nice curbs. No one lives there yet, so if we need the extra parking room - that would be the best place.
After you park, cross back over Division on foot, and walk down Sioux one block, and turn right on Shoshone.
Nick's house is at: 3602 Shoshone Drive, Mt. Vernon, 98273
We are really looking forward to tomorrow, and I know Nick will be so incredibly happy to see all of your faces here!
If you have any questions, please call me at 206-406-7408.
Also, if you cannot make it tomorrow, please feel free to email me with any message that you would like relayed to Nick at a later time. I know it has been difficult to post messages on the blog, so my email is: michalwhiton@gmail.com.
It's a beautiful Friday. Nick is resting peacefully right now. He was up this morning for almost 2 hours, talking with us and meeting with the hospice nurse. He seemed to look better this morning to all of us, but he told us that he probably looks better than he feels.
Thank you to Kristen Warren who started Team Nick on Facebook. I showed it to Nick this morning and read many of the posts to him, and he loved it. He smiled at the old pictures from our days at Edison Elementary, and remembered people's names on the soccer team photo that I had forgotten!
I told him that many people from Team Nick would like to come over tomorrow and wish him well and he thought that would be great. His only worry was that he will not have the energy to talk to everyone.
Times like these are pretty extraordinary, so we have a wild idea:
A PEP RALLY!
At 2 - 2:30pm, we would like to gather everyone in Nick's front yard and out in the street if needed.
We would like everyone to bring one bright colored HELIUM BALLOON (if possible!) and/or a sign that says something encouraging.
At 3pm, we are going to bring Nick out on his deck in front of the house in his very cool new wheelchair.
At that time, we will all do a cheer for him, like:
We love you Nick! We love you Nick! We love you Nick!
(as many times as we want...)
And at the end of the cheer - we thought everyone could release their balloon into the air.
We will have a microphone set up in the yard. So, after the cheer - if anyone would like to tell:
- a favorite memory
- a funny story
- a poem
- or even sing a song...
WHATEVER YOU ARE INSPIRED TO DO, we think Nick will absolutely love this.
And he will probably be ready to rest again around 4pm.
Since parking will be limited here, we suggest going up Division past Haggen's and turning right on Leann Street (which is directly across from Sioux) and parking in the newly created subdivision, which is full of nice curbs. No one lives there yet, so if we need the extra parking room - that would be the best place.
After you park, cross back over Division on foot, and walk down Sioux one block, and turn right on Shoshone.
Nick's house is at: 3602 Shoshone Drive, Mt. Vernon, 98273
We are really looking forward to tomorrow, and I know Nick will be so incredibly happy to see all of your faces here!
If you have any questions, please call me at 206-406-7408.
Also, if you cannot make it tomorrow, please feel free to email me with any message that you would like relayed to Nick at a later time. I know it has been difficult to post messages on the blog, so my email is: michalwhiton@gmail.com.
Wednesday, April 22, 2009
A spigot for Nick
After thinking about it overnight, Nick decided that he wanted to put a catheter with a valve in his side that will allow us to drain his abdominal fluid when he starts to feel very distended. There are some pros and cons to this. The pros are obvious, he will get some relief from the pressure and be able to sleep on his stomach. The cons are that he might get some electrolyte inbalances due to the loss of fluids, and he may end up dehydrated again.
Dr. Kantorowitz, the radiation oncologist at SVH is going to meet with Nick and get him set up for some radiation treatment to hit the part of the tumor that in incringing on Nick's duodenum. Because he is currently partially blocked, he is not able to eat much. The thought is that if they radiate the hell out of that part of the tumor, it will either shrink or at least not progress to the point of full blockage. Chemo did not work for Nick, so we are bringing in chemo's big brother, radiation.
A hospice nurse will be coming by the house tomorrow to meet Nick and to help set up a care plan. They will help us keep Nick comfortable and cared for. It was the hardest phone call I have ever made in my life, rivaling when I had to call Michal Patsy and Ron to tell them that Nick had been diagnosed with cancer.
Nick is pretty tired right now. He had an amazing number of people come to visit him in the hospital and at home. He really appreciates seeing everyone, and feels bad when he is sleeping and people have come to see him. Because of this, we have decided to limit the visitations, and to have an 'open house' of sorts this Saturday. The time is tentatively set for 2-4 in the afternoon, but we will update the blog when we know for sure if/when this will happen.
We are sorry for the mixed messages, and changes to the story. It is a hard decision to limit visitors because we really want Nick to know that each of you cares enough to stop by and give him your love and hugs. But he needs his strength right now, and that is all we can think about. So please plan to stop by on Saturday, and if you can not make it, give us a call and we can arrange another time.
Thank you so much for your support.
Sandra
\
Dr. Kantorowitz, the radiation oncologist at SVH is going to meet with Nick and get him set up for some radiation treatment to hit the part of the tumor that in incringing on Nick's duodenum. Because he is currently partially blocked, he is not able to eat much. The thought is that if they radiate the hell out of that part of the tumor, it will either shrink or at least not progress to the point of full blockage. Chemo did not work for Nick, so we are bringing in chemo's big brother, radiation.
A hospice nurse will be coming by the house tomorrow to meet Nick and to help set up a care plan. They will help us keep Nick comfortable and cared for. It was the hardest phone call I have ever made in my life, rivaling when I had to call Michal Patsy and Ron to tell them that Nick had been diagnosed with cancer.
Nick is pretty tired right now. He had an amazing number of people come to visit him in the hospital and at home. He really appreciates seeing everyone, and feels bad when he is sleeping and people have come to see him. Because of this, we have decided to limit the visitations, and to have an 'open house' of sorts this Saturday. The time is tentatively set for 2-4 in the afternoon, but we will update the blog when we know for sure if/when this will happen.
We are sorry for the mixed messages, and changes to the story. It is a hard decision to limit visitors because we really want Nick to know that each of you cares enough to stop by and give him your love and hugs. But he needs his strength right now, and that is all we can think about. So please plan to stop by on Saturday, and if you can not make it, give us a call and we can arrange another time.
Thank you so much for your support.
Sandra
\
Tuesday, April 21, 2009
Change of Plans!
Good news all, we are actually going home tonight.
Nick does not want to stay overnight in the hospital again. And we are doing whatever it is that he would like to do!
If anyone would like to visit Nick at the house, you are welcome anytime.
3602 Shoshone Drive
Mt. Vernon 98273
Just go up Division past Haggen's, turn left on Sioux, then right on Shoshone.
xo,
Michal
Nick does not want to stay overnight in the hospital again. And we are doing whatever it is that he would like to do!
If anyone would like to visit Nick at the house, you are welcome anytime.
3602 Shoshone Drive
Mt. Vernon 98273
Just go up Division past Haggen's, turn left on Sioux, then right on Shoshone.
xo,
Michal
So Many Wonderful Visitors
Thanks so much to all of you who have visited Nick in the hospital. We are hoping to be here only one more night. Nick is considering having a procedure in the morning that would allow us to drain some of the fluid in his belly periodically at home to make him more comfortable. This might allow us to take Nick home tomorrow.
He was in great spirits this morning when the BEHS boys tennis team visited him. He has had a steady string of visitors since then, and he is now very tired. He and Sandra are currently napping (finally) after a wakeful night and a busy day of visiting.
If anyone would like to visit with Nick tonight, we only ask that perhaps you could stop by between 7 and 9 pm. This would help maximize his nap and hopefully he will have more energy to visit later this evening.
Much love to all of you. It's been so wonderful to see your faces here.
Michal
He was in great spirits this morning when the BEHS boys tennis team visited him. He has had a steady string of visitors since then, and he is now very tired. He and Sandra are currently napping (finally) after a wakeful night and a busy day of visiting.
If anyone would like to visit with Nick tonight, we only ask that perhaps you could stop by between 7 and 9 pm. This would help maximize his nap and hopefully he will have more energy to visit later this evening.
Much love to all of you. It's been so wonderful to see your faces here.
Michal
An update
I'm writing on behalf of Sandra - she's got a lot going on.
Nick had a repeat CT on Monday and his tumor has tripled in size despite the chemo. He is currently in the hospital. The plan is to stop the chemo. We are considering radiation to shrink an area of the tumor that is pressing on his small bowel. Hospice came in to meet with us today and we are considering our options. We are hoping to get him back home tonight.
Please keep sending your positive thoughts and prayers. We'll take everything we can get now.
Nick had a repeat CT on Monday and his tumor has tripled in size despite the chemo. He is currently in the hospital. The plan is to stop the chemo. We are considering radiation to shrink an area of the tumor that is pressing on his small bowel. Hospice came in to meet with us today and we are considering our options. We are hoping to get him back home tonight.
Please keep sending your positive thoughts and prayers. We'll take everything we can get now.
Friday, April 17, 2009
The Weekend is Here
Well, this makes two blogs in one day for me, but I thought it was worth updating. As I mentioned in the earlier blog, Nick had a pretty rough night. He still felt very dizzy today, so Patsy took him in to the oncology clinic to get some IV fluids. Dr. Jafari checked him over and decided that Nick's belly looked a bit too distended, and decided that they should 'tap' the fluid that is accumulating there so he could be more comfortable.
The ultrasound department at SVH was able to squeeze Nick in, and perform the paracentesis this afternoon. During the procedure, they use an ultrasound to determine where the fluid (ascites) build up is, and then stick a pretty big needle in and drain the fluid into large 1-Liter glass bottles. They ended up taking 3 bottles of fluid out of Nick's belly, so just picture about 1.5 2 liter bottles of soda. Nick was pretty happy he didn't have to wait til Monday to have this procedure done.
Dr. J also moved up Nick's CT scan to Monday morning, and we will meet with him on Tuesday to discuss what they find. I'm excited and scared all at the same time.
Have a great sunny weekend, and think positive thoughts about Nick!
Sandra
The ultrasound department at SVH was able to squeeze Nick in, and perform the paracentesis this afternoon. During the procedure, they use an ultrasound to determine where the fluid (ascites) build up is, and then stick a pretty big needle in and drain the fluid into large 1-Liter glass bottles. They ended up taking 3 bottles of fluid out of Nick's belly, so just picture about 1.5 2 liter bottles of soda. Nick was pretty happy he didn't have to wait til Monday to have this procedure done.
Dr. J also moved up Nick's CT scan to Monday morning, and we will meet with him on Tuesday to discuss what they find. I'm excited and scared all at the same time.
Have a great sunny weekend, and think positive thoughts about Nick!
Sandra
Rough Night
Nick has had some pretty rough nights lately. He has had trouble sleeping and his stomach has been bothering him more than before. His last dose of xeloda this cycle was yesterday at 6PM, and he threw up around 4 this morning. Bless his heart, he tried not too, and even told me that he wasn't going to, but could not hold it back. I think he felt a lot better once he did, so it was worth it.
I keep telling him that if the xeloda is making him feel bad, imagine how bad the cancer feels right now!
I keep telling him that if the xeloda is making him feel bad, imagine how bad the cancer feels right now!
Wednesday, April 15, 2009
Greetings From The Land of Ribs
Hey Y'all!I just wanted to wish everyone a Happy Belated Easter from Memphis.
I arrived here on Easter morning, in the middle of thunderstorms and torrential rain. It was quite fitting, as I was very sad to be away from our family, especially on the holiday. It was a great day for some ugly crying.
I am here for a pediatric oncology rotation (which was not possible to reschedule) and it is quite busy. The kids I have met in clinic are incredibly cute and fun and heartbreaking, all at once. Both Nick's situation and this experience here are reminders of how ruthlessly undiscriminating this disease is. It truly is beyond understanding, on so many different levels.
What is amazing about St. Jude's is that children come from all over the world to be treated here. (I met a family from Panama yesterday!) A shuttle picks up the child and family at the airport, and brings them to the campus where lodging and meals are provided. They stay for as long as necessary, and regardless of insurance status, the family never receives a bill.
They say that it's not so safe to go running where I am staying in Memphis (next to the jail and 20+ bail bond outfits), so I've decided to channel some of Nick's best advice when exploring a new place--
do it on a bike.
Please meet Elvis:
I will only have her for a few weeks, because the nice guy at the bike shop has agreed to buy her back from me before I go. This is way cheaper than renting, so I am totally psyched.
I spoke with Nick today on the tellie, and he sounded tired, but good. He continues to struggle with the dizziness and is completely wiped out energywise from the chemo. But, he still made sure that I had a helmet and that I was wearing it when riding Elvis.
Nick used to work for a company called Bicycle Adventures as a tour guide and fix-it guy. His knowledge of the many bicycle trails and routes in various states is amazing. When I moved to Philly almost 3 years ago, Nick bought me two books that had detailed maps of the bike trails all around the city and another for the greater Pennsylvania countryside (which is beautiful, btw).
Nick toured through Europe on his bike several years ago and wrote a little novella in his journal about his travels. We re-read portions of it when I was home, and it was great. It's written in a way that makes you feel like you're right there on the trail, with detailed descriptions of smells and weather and people...
Perhaps we should put some of the entries on the blog.
Tomorrow is Nick's last day of round 2! He is very happy about this. Next Wednesday, he will have another CT scan to see what all of this chemo is doing, so we are hoping for a good report.
We have contacted Michael Broffman in California, the Chinese Medicine specialist that was recommended by our friend David Craven. (Thank you, David!) We are looking forward to hearing what he suggests for Nick's diet and any other herbal remedies that might be worth trying in conjunction with the chemotherapy. You just never know what might work....
Miss you all back home!
Love,
Michal
Tuesday, April 14, 2009
Go Mariners!
The Mariners are off to a 6-2 start, and Nick watched their home opener from the comfort of our couch downstairs. It was a nailbiter with the Mariners winning it in 10 innings. We considered going to the game, but knew that it would be at the tail end of his chemo cycle and decided to wait for better timing. Skagit County Parks and Rec has several dates where they charter a tour bus to deliver about 50 people to and from the games, and I think we will try to attend one in the near future.
I arrived home tonight to find our neighbor Mark mowing the lawn for us. It was a wonderful gift. Nick has been getting dizzy when he stands up lately, so even though he has been able to spend some time awake, he is not able to be active. I keep telling him that he can use the mower to help hold himself up but.......[p.
I also arrived home to find a postcard in the mail from Bonnie Olpin. Now this may not seem noteworthy, but Nick gets a postcard from Bonnie every day. Each has an inspirational saying, or just some kind words. She is single handedly keeping the United States Postal Service in business. And she is keeping our spirits up. Thank you Bonnie.
Time to get the kids off to bed and make sure Reid has his homework done.
Sandra
I arrived home tonight to find our neighbor Mark mowing the lawn for us. It was a wonderful gift. Nick has been getting dizzy when he stands up lately, so even though he has been able to spend some time awake, he is not able to be active. I keep telling him that he can use the mower to help hold himself up but.......[p.
I also arrived home to find a postcard in the mail from Bonnie Olpin. Now this may not seem noteworthy, but Nick gets a postcard from Bonnie every day. Each has an inspirational saying, or just some kind words. She is single handedly keeping the United States Postal Service in business. And she is keeping our spirits up. Thank you Bonnie.
Time to get the kids off to bed and make sure Reid has his homework done.
Sandra
Monday, April 13, 2009
Monday, Monday
We met with Dr. Jafari today to review Nick's lab results and overall condition. Dr. J was thrilled that Nick has not lost any weight in the past few weeks. He was worried that we would have to back off on the Xeloda dose this week so Nick could tolerate it better, but since he is still weighing in at 193.5, he can finish up this session on the highest dose possible. Nick's labs are also holding steady.
Nick whizzed through his IV treatment today at the clinic with Patsy and Ron by his side. Because of his reaction last week, they watched him closely and infused the Taxotere slowly in the beginning, but all went well, and by 4:30 or so he was home. He has 3 more days of taking the Xeloda and will start his 'week off' on Friday......But until then, we are killing cancer.
Nick whizzed through his IV treatment today at the clinic with Patsy and Ron by his side. Because of his reaction last week, they watched him closely and infused the Taxotere slowly in the beginning, but all went well, and by 4:30 or so he was home. He has 3 more days of taking the Xeloda and will start his 'week off' on Friday......But until then, we are killing cancer.
Sunday, April 12, 2009
Easy Weekend
Last night, Nick and I were were channel surfing, and came across Charleton Heston and Yul Brenner in "The Ten Commandments". For those of you who are unfamiliar with this movie, it would classify as an epic. We dialed in around 9PM, and the movie was at the point where Rameses II (Yul) has just figured out that Moses is Hebrew. Moses was raised by Rameses I's sister as her son, and everyone assumed he was egyptian. He was exiled from Egypt, and most assumed him dead. Anyway, by the time 11PM rolled around, we had just reached the 'burning bush' scene, and Moses was about to return to Egypt to lead his people to the promised land. We were rivited, but knew we had to get up in the morning to go to brunch, so we turned in for the night. Please, if you have seen the movie, do not ruin it for us. We plan to NetFlix it and finish watching at a later date. I can't wait to find out how it ends.
830 came mighty early for Nick this morning. He was very tired, but managed to get showered, dressed and in the car to go to Dave and Patsy's house for Easter Brunch. We had a great meal (nick napped) and the kids had a great time. Larry and Joann came as well, because it was their middle daughter's birthday (that would be me). Travis, Kelly, Dalton and Mason and Auntie Dayle were also there. The quiche was fantastic, and I can attest that the ham smelled delicious.
Tonight, Bryan came over and instead of playing the usual game of scrabble, we played a little Wii Tennis. Come to find out, Bry is a pretty aggressive boxer as well. Those poor Miis didn't stand a chance. Nick also played a set of tennis, and although he did not win, he looked great playing.
Tomorrow we have an appt with Dr. Jafari followed by IV chemo, assuming everything looks OK. I think Nick is not far from his first blood transfusion, as his counts have been dropping consistently over the past 3 weeks. Since Larry has donated over 100 pints of blood over the years, we won't feel too bad using a few to make Nick feel better.
Lastly, just want to give a shout-out to Michal Anne in Memphis Tennessee. We miss you sis. While we would rather have you here with us, we are happy for the kids at St. Jude's and their families who will get to meet you and have you be a part of their life.
830 came mighty early for Nick this morning. He was very tired, but managed to get showered, dressed and in the car to go to Dave and Patsy's house for Easter Brunch. We had a great meal (nick napped) and the kids had a great time. Larry and Joann came as well, because it was their middle daughter's birthday (that would be me). Travis, Kelly, Dalton and Mason and Auntie Dayle were also there. The quiche was fantastic, and I can attest that the ham smelled delicious.
Tonight, Bryan came over and instead of playing the usual game of scrabble, we played a little Wii Tennis. Come to find out, Bry is a pretty aggressive boxer as well. Those poor Miis didn't stand a chance. Nick also played a set of tennis, and although he did not win, he looked great playing.
Tomorrow we have an appt with Dr. Jafari followed by IV chemo, assuming everything looks OK. I think Nick is not far from his first blood transfusion, as his counts have been dropping consistently over the past 3 weeks. Since Larry has donated over 100 pints of blood over the years, we won't feel too bad using a few to make Nick feel better.
Lastly, just want to give a shout-out to Michal Anne in Memphis Tennessee. We miss you sis. While we would rather have you here with us, we are happy for the kids at St. Jude's and their families who will get to meet you and have you be a part of their life.
Wednesday, April 8, 2009
Recovery Time
Tuesday was a recovery day for Nick. His body went through quite an ordeal on Monday during his treatment, and he needed some well-deserved R&R yesterday. He slept a lot in the morning, but woke up in the early afternoon and spent the rest of the day with his family.
By the end of the day, we broke out the Wii. It was our anniversary gift to ourselves last weekend. We scoured the 5 year anniversary gift lists, and found the Wii on the modern list. Our other option was something made of wood or silverware, so it was not a tough choice.
Nick watched me and the kids play tennis for a while, and then could not help himself. He ended up playing several games. Even post-chemo infusion reaction, he exhibited the tennis form and grace that would identify him as a tennis coach to the innocent bystander. His follow through was amazing, and his reach endangered both the children and myself as we watched from the side chair. Needless to say, he beat the competitors (one that he nicknamed Asher) and really enjoyed himself.
We ended up staying awake until after 9PM last night, which is a record lately. I will definitely go to the Wii again tonight, and perhaps take the Wii Fit out of the box and start our daily yoga routine.
I will also try to get Nick to blog something in the near future. He has been so tired lately it is hard for him to concentrate on the computer screen, but after a few more nights of Wiiing, he should be himself again.
Sandra
By the end of the day, we broke out the Wii. It was our anniversary gift to ourselves last weekend. We scoured the 5 year anniversary gift lists, and found the Wii on the modern list. Our other option was something made of wood or silverware, so it was not a tough choice.
Nick watched me and the kids play tennis for a while, and then could not help himself. He ended up playing several games. Even post-chemo infusion reaction, he exhibited the tennis form and grace that would identify him as a tennis coach to the innocent bystander. His follow through was amazing, and his reach endangered both the children and myself as we watched from the side chair. Needless to say, he beat the competitors (one that he nicknamed Asher) and really enjoyed himself.
We ended up staying awake until after 9PM last night, which is a record lately. I will definitely go to the Wii again tonight, and perhaps take the Wii Fit out of the box and start our daily yoga routine.
I will also try to get Nick to blog something in the near future. He has been so tired lately it is hard for him to concentrate on the computer screen, but after a few more nights of Wiiing, he should be himself again.
Sandra
Monday, April 6, 2009
Breathing is a Very Good Thing
I'm not going to lie. Today was sort of a rough one.
Nick and I went to the cancer center this morning for his scheduled infusions of Gemzar and Taxotere. We met with Dr. Jafari first to discuss Nick's energy level and a few other things. He agreed that adding the prednisone back into the mix would be a good idea. We also were given a beta blocker for Nick's heart rate, as he's been clipping along at a rate of ~ 120 for well over a week now.
Blood was drawn, and his labs still appeared steady... for the most part!
So, we settled into our spot and started with the Gemzar. Aside from sweating from his brow at an impressive rate, Nick seemed to be doing fairly okay.
But around noon, the Taxotere was turned on. Within 10 seconds, Nick instantly looked wide-eyed and said: I can't breathe. In a few more seconds, he was beet red from head to toe, and was starting to squirm in his chair. His lips turned blue and his arms were shaking. I can't even explain how immediate it all happened. It was a matter of seconds.
My mom, who had just stopped by with lunch, ran to get one of the nurses. They placed oxygen on him, and immediately stopped the Taxotere...
He was pretty confused for a bit and couldn't really speak. But as he slowly improved, his breathing deepened, his normal color returned and he started recognizing who we were... "Whaaaat haaaappened?" he asked in this hoarse, sweet little voice. He didn't remember much of it except the immediate feeling of chest tightness.
This is what they call an infusion reaction. I had never seen one before. And it was scary to witness it... with Nick.
The amazing thing is that after an infusion reaction like this, you STILL get your Taxotere! Shocking, yes. They tank you up with steroids and benadryl and xanax, and then start the Taxotere again, at a much slower rate.
And they watch you like a hawk...
Nick was pretty exhausted at the end of the day, and climbed right into bed after we returned home. His forehead was still a fountain of little sweat beads. But, he was so happy to be done. And we were so happy to have him out of that chair.
We had to say our goodbyes tonight. I am leaving early tomorrow morning to return to Philadelphia. Words cannot really describe how sad it makes me to leave. But, I know these next few weeks will go quickly, and I will be back before you can say.... Taxotere!
It's just very hard to go. Especially after today. Ugh.
Maybe I will pretend that I slept through my alarm, or couldn't find the airport... or got distracted by tulips blooming?
See you all again very soon.
Love,
Michal
Nick and I went to the cancer center this morning for his scheduled infusions of Gemzar and Taxotere. We met with Dr. Jafari first to discuss Nick's energy level and a few other things. He agreed that adding the prednisone back into the mix would be a good idea. We also were given a beta blocker for Nick's heart rate, as he's been clipping along at a rate of ~ 120 for well over a week now.
Blood was drawn, and his labs still appeared steady... for the most part!
So, we settled into our spot and started with the Gemzar. Aside from sweating from his brow at an impressive rate, Nick seemed to be doing fairly okay.
But around noon, the Taxotere was turned on. Within 10 seconds, Nick instantly looked wide-eyed and said: I can't breathe. In a few more seconds, he was beet red from head to toe, and was starting to squirm in his chair. His lips turned blue and his arms were shaking. I can't even explain how immediate it all happened. It was a matter of seconds.
My mom, who had just stopped by with lunch, ran to get one of the nurses. They placed oxygen on him, and immediately stopped the Taxotere...
He was pretty confused for a bit and couldn't really speak. But as he slowly improved, his breathing deepened, his normal color returned and he started recognizing who we were... "Whaaaat haaaappened?" he asked in this hoarse, sweet little voice. He didn't remember much of it except the immediate feeling of chest tightness.
This is what they call an infusion reaction. I had never seen one before. And it was scary to witness it... with Nick.
The amazing thing is that after an infusion reaction like this, you STILL get your Taxotere! Shocking, yes. They tank you up with steroids and benadryl and xanax, and then start the Taxotere again, at a much slower rate.
And they watch you like a hawk...
Nick was pretty exhausted at the end of the day, and climbed right into bed after we returned home. His forehead was still a fountain of little sweat beads. But, he was so happy to be done. And we were so happy to have him out of that chair.
We had to say our goodbyes tonight. I am leaving early tomorrow morning to return to Philadelphia. Words cannot really describe how sad it makes me to leave. But, I know these next few weeks will go quickly, and I will be back before you can say.... Taxotere!
It's just very hard to go. Especially after today. Ugh.
Maybe I will pretend that I slept through my alarm, or couldn't find the airport... or got distracted by tulips blooming?
See you all again very soon.
Love,
Michal
Sunday, April 5, 2009
Sunny Sunday
What a gorgeous spring day we are having. It was 70 degrees on our deck at the peak of the day, and I've fired up the barbeque to make sure it will work for dinner tonight. It is hard to believe that we will have to go back to rainy spring weather for another 3 months.........
Today is our 5th wedding anniversary, and we could not have asked for a better day. Patsy and Dave watched the little ones for us last night, so we got to sleep in this morning, and woke just in time to have family and friends over for coffee. Bryan and Michal got Nick outside to play a little frisbee (with the help of both Libby and Darian). At the moment everyone is resting, and will hopefully wake up in time to go visit the park and ride bikes and trikes. If only the tulips were out.
Nick goes in for IV chemo tomorrow. He has not had as much energy as he had during the first few weeks, so we are going to ask Dr. Jafari if he should go back on the prednisone. We hope to get him on something that can boost his energy levels. He is really responding to music right now, so I need to get the IPOD on full-time and compile a list of high-energy songs that will make him want to sing along. Send your suggestions for your favorite 'feel good' songs our way.
Gotta run, I hear someone waking up from a nap.
Today is our 5th wedding anniversary, and we could not have asked for a better day. Patsy and Dave watched the little ones for us last night, so we got to sleep in this morning, and woke just in time to have family and friends over for coffee. Bryan and Michal got Nick outside to play a little frisbee (with the help of both Libby and Darian). At the moment everyone is resting, and will hopefully wake up in time to go visit the park and ride bikes and trikes. If only the tulips were out.
Nick goes in for IV chemo tomorrow. He has not had as much energy as he had during the first few weeks, so we are going to ask Dr. Jafari if he should go back on the prednisone. We hope to get him on something that can boost his energy levels. He is really responding to music right now, so I need to get the IPOD on full-time and compile a list of high-energy songs that will make him want to sing along. Send your suggestions for your favorite 'feel good' songs our way.
Gotta run, I hear someone waking up from a nap.
Wednesday, April 1, 2009
Body by Libby
Libby has decided it's time to get her Daddy back into shape.
These are the exercises she's cooked up so far, in case you want to try this at home.
We are expecting some serious results...
Nick has just a few more pounds to gain this week, so Dr. Jafari will feel comfortable pushing ahead to the next round of chemo using the highest possible doses for all of Nick's chemotherapies. From everything I have read, the best results are at the highest doses... so please pray for a few more pounds!
It's pretty remarkable how much better Nick seems to feel during this "off week" from chemo. He even has a new trick, which is: pretending to vomit at the dinnertable. I know that sounds a little gross, but after his one and only vomit on Saturday, the subsequent "pretend vomits" have been pretty hilarious. You just have to know Nick to understand.
The fact that his "real vomit" was sort of a fluke and that his appetite has returned are both tremendously encouraging. :)
These are the exercises she's cooked up so far, in case you want to try this at home.
We are expecting some serious results...
Nick has just a few more pounds to gain this week, so Dr. Jafari will feel comfortable pushing ahead to the next round of chemo using the highest possible doses for all of Nick's chemotherapies. From everything I have read, the best results are at the highest doses... so please pray for a few more pounds!
It's pretty remarkable how much better Nick seems to feel during this "off week" from chemo. He even has a new trick, which is: pretending to vomit at the dinnertable. I know that sounds a little gross, but after his one and only vomit on Saturday, the subsequent "pretend vomits" have been pretty hilarious. You just have to know Nick to understand.
The fact that his "real vomit" was sort of a fluke and that his appetite has returned are both tremendously encouraging. :)
Monday, March 30, 2009
Forgive me, friends, it's been several days since my last blog. I have been off the chemotherapy now since Thursday evening, and promptly vomited for the first time on Saturday morning. Maybe it's that cold turkey withdrawal deal, but I must say I felt like a new man with no nausea for hours afterward.
Today is my fourth day without chemotherapy. I load up again on Friday. We were briefly discussing my cutting back to three Xeloda twice a day, but my blood work results were "fantastic," according to my Dr. Jafari (I claim him now) and my weight was increasing, so we will stay at four Xelodas twice a day. Nausea be damned! Michal and Sandra both were all in for this, and I feel strong and otherwise healthy so here we go again for Round Two at week's end.
By the way, Dr. Jafari grew up and studied medicine in Germany, as if he could be any cooler. I am a "Germaphile," and we communicated a bit in Deutsch today. Lots of fun for me.
My appetite has returned this weekend, and things smell better to me. The bouquet one gets from the chemo lends everything an overpowering smell. Walking in the front door... The kitchen entry.... the open fridge... so the house smells like home again for the past few days.
Right now my biggest challenge is to stay hydrated, and Michal Anne's idea of drinking Gatorade between waters has been helpful. Still my pulse rate is up too much, and drinking fluids can alleviate that.
Tonight we lasagna, with a chance of a possible sherbet afterwards. Nummy!!!
Today is my fourth day without chemotherapy. I load up again on Friday. We were briefly discussing my cutting back to three Xeloda twice a day, but my blood work results were "fantastic," according to my Dr. Jafari (I claim him now) and my weight was increasing, so we will stay at four Xelodas twice a day. Nausea be damned! Michal and Sandra both were all in for this, and I feel strong and otherwise healthy so here we go again for Round Two at week's end.
By the way, Dr. Jafari grew up and studied medicine in Germany, as if he could be any cooler. I am a "Germaphile," and we communicated a bit in Deutsch today. Lots of fun for me.
My appetite has returned this weekend, and things smell better to me. The bouquet one gets from the chemo lends everything an overpowering smell. Walking in the front door... The kitchen entry.... the open fridge... so the house smells like home again for the past few days.
Right now my biggest challenge is to stay hydrated, and Michal Anne's idea of drinking Gatorade between waters has been helpful. Still my pulse rate is up too much, and drinking fluids can alleviate that.
Tonight we lasagna, with a chance of a possible sherbet afterwards. Nummy!!!
Saturday, March 28, 2009
Week 3 of Treatment......
Today marks the start of the 5th week since Nick was preliminarily diagnosed with cancer, and the 3rd week of his chemotherapy treatment. These weeks have passed with blinding speed for me. It is noteworthy to mention that this is Nick's first 'off week' for chemo. In each 21 day cycle, he takes oral xeloda the first 14 days, and gets the last 7 off. The xeloda keeps on working during that time, but he doesn't have to swallow the 8 horse pills a day and deal with the upset stomach that accompanies the pills each night. We are excited to see how his body reacts and whether he will have more energy to get out of the house.
But, in the event he still wants to hang close to home, it is good to know that the world continues to come to him. We have a steady stream of family and friends who drop by to laugh and talk with us. Thursday night we had tacos, shirley temples, cupcakes and ice cream cake with Connie, Tawnya, Greg and Susan. Nick ate 4 tacos because they were so tasty. We are planning to credit Connie with his miraculous weight gain this week..... Pics to follow.
Some of you have mentioned that you would like to stop by, but don't want to bother us. I will just say that if you would like to stop by, we would love to see you. The kids enjoy showing off their jumping prowess to different people, and Nick and I enjoy the company too.
Sandra
But, in the event he still wants to hang close to home, it is good to know that the world continues to come to him. We have a steady stream of family and friends who drop by to laugh and talk with us. Thursday night we had tacos, shirley temples, cupcakes and ice cream cake with Connie, Tawnya, Greg and Susan. Nick ate 4 tacos because they were so tasty. We are planning to credit Connie with his miraculous weight gain this week..... Pics to follow.
Some of you have mentioned that you would like to stop by, but don't want to bother us. I will just say that if you would like to stop by, we would love to see you. The kids enjoy showing off their jumping prowess to different people, and Nick and I enjoy the company too.
Sandra
Wednesday, March 25, 2009
You know, I've had time to think here while I convalesce. And I think the names of my chemotherapies have been dreamed up by science fiction junkies. Gemzar... Taxotere... Xeloda.... If these aren't the names of space stations and alien planets, huh! Of course, they're busy firing away like Han Solo at my liver lesions. I say go get 'em, rebel ships, and if your names help to scare off the tumors, more power to you! But someone's had some fun with this, and I'll bet he or she knows George Lucas.
Tuesday, March 24, 2009
The Good Juice
Yesterday, Nick had his second infusion of Gemzar and Taxotere at the lovely new cancer center at Skagit Valley Hospital. To capture Nick's affection for this place, we took a little video before his first infusion last week.
Yesterday, we met with Dr. Jafari to review Nick's blood counts. I am happy to report that they are holding rock steady. Although... this week will be the bigger test. Blood counts tend to drop after the second or third treatment cycle - when the good guys are accumulating in big numbers and putting some stress on the bone marrow. But, this is where Nick's youth and otherwise good health should help him out.
The other thing that we would like to keep from dropping is Nick's weight. He has been losing weight fairly quickly since all of this began (almost 20 lbs), because food just doesn't sound good to him. Anything with flavor or spices... overwhelms him. This makes sense, as Dr. Jafari explained to us that the Taxotere makes thing smell funny and gives many foods a metallic taste.
Our solution to his lack of calories is this supplement powder:
2 scoops = 1250 calories
Protein shake, anyone?
Last week, Nick slept through most of his infusion. But yesterday's dose of the good juice was a different story. He was awake, alert and chatting with the nurses about their ski trips over the weekend. I think the steroid he is taking is agreeing with him immensely.
Being with Nick through these first initial weeks of treatment has been an incredible reminder of who he is, and what an absolute delight he is on so many levels. I wish I had been better about writing down the hilarious things he has said during this process, because his witty, under the breath comments have been priceless.
I am very lucky to be here right now.
Yesterday, we met with Dr. Jafari to review Nick's blood counts. I am happy to report that they are holding rock steady. Although... this week will be the bigger test. Blood counts tend to drop after the second or third treatment cycle - when the good guys are accumulating in big numbers and putting some stress on the bone marrow. But, this is where Nick's youth and otherwise good health should help him out.
The other thing that we would like to keep from dropping is Nick's weight. He has been losing weight fairly quickly since all of this began (almost 20 lbs), because food just doesn't sound good to him. Anything with flavor or spices... overwhelms him. This makes sense, as Dr. Jafari explained to us that the Taxotere makes thing smell funny and gives many foods a metallic taste.
Our solution to his lack of calories is this supplement powder:
2 scoops = 1250 calories
Protein shake, anyone?
Nick also seems to have gained the superpower of bionic smelling, in addition to things smelling not so good. For example, whenever I walk into his house, from 30 feet away he'll ask "what'd you have for lunch, Mike?" and offer me a breath mint. It's actually kind of amazing.
Last week, Nick slept through most of his infusion. But yesterday's dose of the good juice was a different story. He was awake, alert and chatting with the nurses about their ski trips over the weekend. I think the steroid he is taking is agreeing with him immensely.
Being with Nick through these first initial weeks of treatment has been an incredible reminder of who he is, and what an absolute delight he is on so many levels. I wish I had been better about writing down the hilarious things he has said during this process, because his witty, under the breath comments have been priceless.
I am very lucky to be here right now.
Sunday, March 22, 2009
Tennis Team Power!
Hey Tiger Girls' Tennis Team!
Just wanted you all to know I'm thinking about you and I miss coaching you. I should've written this a couple of weeks ago, but I wasn't sure if you were following this blog. I want you to go out there tomorrow and put on a tennis clinic for those Lakewood girls. Don't feel sorry for them; remember they would pay a lot of money for such a clinic if it were at a tennis club. Mainly play with a smile, because it helps to relax your whole body, and I guarantee you will play some of your best tennis.
Have fun!
Coach Whiton
Just wanted you all to know I'm thinking about you and I miss coaching you. I should've written this a couple of weeks ago, but I wasn't sure if you were following this blog. I want you to go out there tomorrow and put on a tennis clinic for those Lakewood girls. Don't feel sorry for them; remember they would pay a lot of money for such a clinic if it were at a tennis club. Mainly play with a smile, because it helps to relax your whole body, and I guarantee you will play some of your best tennis.
Have fun!
Coach Whiton
Friday, March 20, 2009
Blogallyavish
Hey the house is just so quiet at the moment, I stole away for a quick blog. Sandra's at work, the little ones are away at school and play and I hear the birds outside. Wow. This day wants to get nice, but the quiet is so energizing in itself. I am not a lonely person, and have never considered myself to be. My imagination is far too childlike to run out of of thoughts or ideas. When I nap during the day, which I am really good at if you must know, I love just getting lost in thought, letting the experiences take me wherever they will go. If you said, "Nick, I'll give you two minutes to fall asleep," I could do that just about 24/7. If you said, "Nick, I'll give you two minutes to find your happy place," I'd say "I'm already there."
Tuesday, March 17, 2009
The Morning After
Today was Nick's first 'day after' IV chemo, and I must say he looked better than he has in weeks. He looks good, feels good, eats good......if only we could solve the sleeps good part. Tonight we took the kids to Hillcrest Park to play on the big toy, then took a little walk around the tennis courts. Dr. Jafari prescribed some prednisone (a steroid) to help him with his appetite and his energy levels, and it seems to be working.
We are excited to have Nick get his appetite back, because the house is literally overflowing with food. We are so blessed with family and friends who are concerned that we may not have the energy to cook right now. I can't begin to thank you all, because I'd be sure to forget someone and feel bad about that, but I have to mention a few just because.
The Consistency Award goes to Libby's preschool (Bethany Covenant) parent group. They have put together a plan where everyday that Libby comes home from school, she brings an entire meal with her. Talk about a WOW.
The Long Distance Award was previously owned by Nick's Aunt Jacqueline from Reno who provided us with several dinners from "Dream Dinners". Today however, a care package arrived from Robby Nowak in Australia, which was full of Tim Tams (a cookie that Aussies call a Biscuit) and a tube of vegemite. Little known fact.....vegemite is touted as "one of the world's richest known sources of Vitamin B". Rob suggests eating it on toast. I'm curious to try it, but it will have to wait til I get my courage up.
Many more of you have dropped by snacks and meals. The kids are really appreciating the variety of foods, as they are used to getting the 4 or 5 standards that Mommy cooks. We can't thank you all enough for thinking of us. We will however make one request. If you come to visit us, please come hungry!
Sandra
We are excited to have Nick get his appetite back, because the house is literally overflowing with food. We are so blessed with family and friends who are concerned that we may not have the energy to cook right now. I can't begin to thank you all, because I'd be sure to forget someone and feel bad about that, but I have to mention a few just because.
The Consistency Award goes to Libby's preschool (Bethany Covenant) parent group. They have put together a plan where everyday that Libby comes home from school, she brings an entire meal with her. Talk about a WOW.
The Long Distance Award was previously owned by Nick's Aunt Jacqueline from Reno who provided us with several dinners from "Dream Dinners". Today however, a care package arrived from Robby Nowak in Australia, which was full of Tim Tams (a cookie that Aussies call a Biscuit) and a tube of vegemite. Little known fact.....vegemite is touted as "one of the world's richest known sources of Vitamin B". Rob suggests eating it on toast. I'm curious to try it, but it will have to wait til I get my courage up.
Many more of you have dropped by snacks and meals. The kids are really appreciating the variety of foods, as they are used to getting the 4 or 5 standards that Mommy cooks. We can't thank you all enough for thinking of us. We will however make one request. If you come to visit us, please come hungry!
Sandra
Monday, March 16, 2009
good times with iv chemo
I didn't spend too much time fretting over the weekend about today. After all, I had my port in place and well, I was pretty much invincible. I hadn't stared at the two bandaid spots in the mirror for too long, so I wasn't sure which was the actual port and which was the loop around. Well, I guessed wrong, but my nurse was aggressive but gentle and got the job done. She drew my blood, flushed the port, then put in the pre-chemo nausea stuff and finally the freshly-mixed delicious chemo cocktail. I got to order lunch while there, and they deliver it within a short bit. Great service. Two nurses with high energy just racing around all day. I was there today for 4 and 1/2 hours before they sent me packing. But they had reclining chairs. A beautiful outdoor rock garden with running water (in the summer). Sculptures. Nice paintings in the big room you sit in. The colors, though, are what come to mind in the room. Everything has been done with your comfort in mind. The light-streaming views to the courtyard. The sage green paint on the walls. The welcoming hard wood floors. The purple chairs and tables for friends and family. The nurses station that brings to mind the greens and browns of a Starbucks stand. I was fine spending a little time there today. Next time I go will be next Monday. I won't be dreading it.
Sunday, March 15, 2009
Modern Medicine Magique
Hey all, it’s Sunday night and everyone is already asleep… so I just had a little hankering to geek out for a few paragraphs on the specifics of Nick’s treatment, as some of it is actually pretty interesting.
As we mentioned before, Nick will receive 3 chemotherapies.
The first one, Xeloda, is a pill. (Cool, eh?) Nick started this one on Friday. 4 horse pills in the morning and 4 at night. He will take these pills for 14 days in a row. He says that he feels fine so far, just a little more tired…
Xeloda is interesting because it’s not an active chemotherapy, until you gulp it down. It then travels to the liver where it is converted into its active, butt-kicking form called 5-FU. I won’t state the obvious about a chemo that has a phrase like “F U” in it. But, I will say… the great thing about Xeloda is that once it is converted into its Chuck Norris form, it doesn’t have to travel very far to get to the tumor because it’s already on top of it, right there in the liver. So, that is just - great design. We love Xeloda.
Rumor has it that when Xeloda is used with Gemzar (which is infused through the port) it’s good to give the Xeloda first, just for a few days, to sort of… prime the pump. This apparently makes the Gemzar more effective once it’s added on the 4th day.
So, Nick will get his first infusions of both Gemzar and Taxotere tomorrow morning through his awesome and no longer tender port. He will only have 2 infusions per cycle (two Mondays in a row, then one off).
So… everyone is resting up for tomorrow, when all three warriors will finally be on board, ready and willing to wreak some havoc on Nick’s liver hogging tumor.
To quote Nick, “Somebody’s got a case of the Mondays…”
Ha! I think he will do great.
Lots-o-love to all yo healthy livahs,
Michal
As we mentioned before, Nick will receive 3 chemotherapies.
The first one, Xeloda, is a pill. (Cool, eh?) Nick started this one on Friday. 4 horse pills in the morning and 4 at night. He will take these pills for 14 days in a row. He says that he feels fine so far, just a little more tired…
Xeloda is interesting because it’s not an active chemotherapy, until you gulp it down. It then travels to the liver where it is converted into its active, butt-kicking form called 5-FU. I won’t state the obvious about a chemo that has a phrase like “F U” in it. But, I will say… the great thing about Xeloda is that once it is converted into its Chuck Norris form, it doesn’t have to travel very far to get to the tumor because it’s already on top of it, right there in the liver. So, that is just - great design. We love Xeloda.
Rumor has it that when Xeloda is used with Gemzar (which is infused through the port) it’s good to give the Xeloda first, just for a few days, to sort of… prime the pump. This apparently makes the Gemzar more effective once it’s added on the 4th day.
So, Nick will get his first infusions of both Gemzar and Taxotere tomorrow morning through his awesome and no longer tender port. He will only have 2 infusions per cycle (two Mondays in a row, then one off).
So… everyone is resting up for tomorrow, when all three warriors will finally be on board, ready and willing to wreak some havoc on Nick’s liver hogging tumor.
To quote Nick, “Somebody’s got a case of the Mondays…”
Ha! I think he will do great.
Lots-o-love to all yo healthy livahs,
Michal
Saturday, March 14, 2009
Message from Nick's Tennis Team...
This is a little message from the BEHS girl's tennis team, who wanted to wish Nick well and let him know that he is missed on the courts this season!
Thursday, March 12, 2009
Chemo Starts Friday!
We met with Dr. Sam Whiting today, a medical oncologist at the Seattle Cancer Care Alliance. Although his picture on the website made him look about 12 years old, we were happy to discover that he is almost 40.
Our journey to Seattle was primarily to investigate the option of doing a clinical trial or some other type of chemotherapy kung fu that might only exist within a university based cancer program... however, there were not any active trials ongoing for Nick's specific cancer.
Dr. Whiting was a wonderful guy, very down to earth, who spent almost 2 hours with us. He reviewed Nick's PET scan with him (which he hadn't seen yet) and explained at length what he thought the best treatment path would be right now. He and Dr. Jafari had already spoken to each other and discussed the available options. They both agreed on using
3 chemotherapies upfront:
1 - Capecitabine (Xeloda)
2 - Gemcitabine (Gemzar)
3 - Taxotere
These will be given over a 3-week cycle. And Nick will undergo three cycles (9 weeks) of this treatment, before another scan. At that time, they will determine if the tumor has reduced in size enough to remove it.
Considering that March is the 3rd month of the year, and that there is a 3 in the number 13... I can't help but think that this Friday the 13th is going to be a lucky day... when the three, 3-week cycles, of 3 chemotherapies... will begin. And after 9 weeks of treatment (almost to the day!), Nick will turn 39 years old.
Let's hope he won't be eating after midnight that night.
Our journey to Seattle was primarily to investigate the option of doing a clinical trial or some other type of chemotherapy kung fu that might only exist within a university based cancer program... however, there were not any active trials ongoing for Nick's specific cancer.
Dr. Whiting was a wonderful guy, very down to earth, who spent almost 2 hours with us. He reviewed Nick's PET scan with him (which he hadn't seen yet) and explained at length what he thought the best treatment path would be right now. He and Dr. Jafari had already spoken to each other and discussed the available options. They both agreed on using
3 chemotherapies upfront:
1 - Capecitabine (Xeloda)
2 - Gemcitabine (Gemzar)
3 - Taxotere
These will be given over a 3-week cycle. And Nick will undergo three cycles (9 weeks) of this treatment, before another scan. At that time, they will determine if the tumor has reduced in size enough to remove it.
Considering that March is the 3rd month of the year, and that there is a 3 in the number 13... I can't help but think that this Friday the 13th is going to be a lucky day... when the three, 3-week cycles, of 3 chemotherapies... will begin. And after 9 weeks of treatment (almost to the day!), Nick will turn 39 years old.
Let's hope he won't be eating after midnight that night.
Wednesday, March 11, 2009
The port is in.
Nick's Port placement went well today. The surgery was scheduled for 1040, and takes approximately 40 minutes, but they got him in ahead of schedule and he was out of surgery by about 1040. The surgery happens under 'conscious sedation' which is a pleasant way of saying a local anesthetic with anxiety medication. This allows for a shorter recovery time, and therefore a shorter stay. Nick was comfortably at home by 1230.
Dr. Jafari visited Nick before his surgery to talk about his plan for chemotherapy. Assuming our consultation with Sam Whiting concurs with Dr. Jafari's, we may be starting as soon as Friday.
I went back to work today for the first time post-diagnosis. I'm not sure I did anything productive, but it was good to get back in the swing of things. It is very comforting to know that all is running well without me.
We have an early appt tomorrow so I must get to bed, but wanted to update you all that the cogs in this wheel are starting move and we hope to be able to report on some real progress soon.
Sandra
Dr. Jafari visited Nick before his surgery to talk about his plan for chemotherapy. Assuming our consultation with Sam Whiting concurs with Dr. Jafari's, we may be starting as soon as Friday.
I went back to work today for the first time post-diagnosis. I'm not sure I did anything productive, but it was good to get back in the swing of things. It is very comforting to know that all is running well without me.
We have an early appt tomorrow so I must get to bed, but wanted to update you all that the cogs in this wheel are starting move and we hope to be able to report on some real progress soon.
Sandra
Tuesday, March 10, 2009
Port Placement Eve
We have been incredibly fortunate to have appointments and procedures happen so quickly for Nick, and this week has been no different.
After Monday's appointment with Dr. Jafari, we were scheduled to meet with a surgeon this Friday to discuss the placement of Nick's port-a-cath (please see Nick's previous blog to get a feeling for... just how excited he is about this). Friday seemed far far away, particularly because it would only be a consultation. The actual placing of the port would not happen until next week.
Monday night, we called Mark Johnson, a family friend and general surgeon at SVH, to see what he thought about the timing (or rather, the torture of waiting another week). He thought for about 2 seconds and said, "is Nick free this Wednesday?"
Needless to say, my bro better not be snacking after midnight tonight... because tomorrow morning, the wonderful Mark Johnson is placing a port into my brother's chest - perhaps Nick's favorite gift of all time. This means that chemotherapy can start sooner than we thought. And that is a very very good thing.
Some people might not like idea of having a port in their chest...
Nick cannot wait to get his.
After Monday's appointment with Dr. Jafari, we were scheduled to meet with a surgeon this Friday to discuss the placement of Nick's port-a-cath (please see Nick's previous blog to get a feeling for... just how excited he is about this). Friday seemed far far away, particularly because it would only be a consultation. The actual placing of the port would not happen until next week.
Monday night, we called Mark Johnson, a family friend and general surgeon at SVH, to see what he thought about the timing (or rather, the torture of waiting another week). He thought for about 2 seconds and said, "is Nick free this Wednesday?"
Needless to say, my bro better not be snacking after midnight tonight... because tomorrow morning, the wonderful Mark Johnson is placing a port into my brother's chest - perhaps Nick's favorite gift of all time. This means that chemotherapy can start sooner than we thought. And that is a very very good thing.
Some people might not like idea of having a port in their chest...
Nick cannot wait to get his.
Monday, March 9, 2009
Snowy Monday for Cancer Care
Today we met with medical oncologist, Dr. Jafari, in Mount Vernon at the Cancer Care Center. He was convinced we needed to begin with chemotherapy, in order to shrink the tumor down, before we remove what's left of it with surgery. We can begin the chemo as early as next week, as soon as we can schedule a surgery for a port-a-cath to be put in my upper right chest. The port-a-cath spares the needle-challenged patient with one injection that takes care of all the rest. They will use this port to inject future chemo treatments, to take blood draws, etc. For me, this was today's front page news. And mighty exciting too!!
We still plan to keep Thursday's appointment with Sam Whiting, an oncologist in Seattle who is thought by some to be the "med onc guru" in the region. He may suggest a path of treatment or combo of meds that is revolutionary, aggressive and perfect for our needs. He may spill his coffee. But we are taking the pilgrimage to hear his words. He is worth it from all I've heard.
We cancelled our Tuesday appointment with Raymond Yeung, the surgeon, and he agreed we needed to begin with treatment rather than surgery so he was fine with not meeting for a while. We are going to keep his number on speed dial, though, for when the chemo has shrunk the tumor down to surgery size.
We still plan to keep Thursday's appointment with Sam Whiting, an oncologist in Seattle who is thought by some to be the "med onc guru" in the region. He may suggest a path of treatment or combo of meds that is revolutionary, aggressive and perfect for our needs. He may spill his coffee. But we are taking the pilgrimage to hear his words. He is worth it from all I've heard.
We cancelled our Tuesday appointment with Raymond Yeung, the surgeon, and he agreed we needed to begin with treatment rather than surgery so he was fine with not meeting for a while. We are going to keep his number on speed dial, though, for when the chemo has shrunk the tumor down to surgery size.
Friday, March 6, 2009
Friday's PET scan
Nick had his PET/CT scan this morning. It looks from the scan that he may have a few lymph nodes that are involved in this cancer thing as well as his gallbladder and liver. To us, this likely means that he will undergo chemotherapy prior to having surgery to remove the cancer. We were able to get in Monday with Dr. Jafari at the Mount Vernon Cancer Care Center, so we can discuss treatment options right away, and not wait for an appt to become available with the Seattle Cancer Care Alliance (SCCA). Since both institutions are affiliated, we would most likely be referred for treatment in Mount Vernon (3 minutes from our home), so it makes sense to get started there.
Nick was able to pop in at tennis practice today at BEHS. The coaches and all the girls were excited to see him and he got to see how much he is missed. It was really his first outing besides going to procedures or doctor's appointments in a week. At first, his doctors prescribed him with a pain medication that made him itch, so he had to take benadryl. The combination of benadryl, pain medication and narcolepsy meant that he was spending a large part of his day napping. He has a new pain medicine that doesn't make him itch, so he has been able to stop taking the benadryl, and has been much more alert.
I must continue to thank you all for the support that keeps pouring in. Your comments, cards, emails, texts, and calls are all reminders of what wonderful family and friends we have, and what a wonderful man I have married.....
Sandra
Nick was able to pop in at tennis practice today at BEHS. The coaches and all the girls were excited to see him and he got to see how much he is missed. It was really his first outing besides going to procedures or doctor's appointments in a week. At first, his doctors prescribed him with a pain medication that made him itch, so he had to take benadryl. The combination of benadryl, pain medication and narcolepsy meant that he was spending a large part of his day napping. He has a new pain medicine that doesn't make him itch, so he has been able to stop taking the benadryl, and has been much more alert.
I must continue to thank you all for the support that keeps pouring in. Your comments, cards, emails, texts, and calls are all reminders of what wonderful family and friends we have, and what a wonderful man I have married.....
Sandra
Thursday, March 5, 2009
I medicate, therefore I sleep
I join with Nick and Sandra in thanking everyone from the bottom of my heart for their love and prayers sent in Nick's direction. Your calls, emails, visits, food, childcare offers... have all been so appreciated.
Our mom was visiting me in Philadephia last Friday when Sandra called us with the results from the CT scan. I am very glad that I was with Mom when we received the news. We immediately arranged to fly home the next day.
As luck would have it, my best friend from medical school, Richard Ha, happened to be in Seattle for the weekend. (He normally resides in NYC and pretends to be a radiologist.) But instead of visiting friends, Richard and Bryan Benson spent their Saturday at the UW emergency room, making sure Nick was seen by the right people, handled with care and entertained appropriately. :) His biopsy procedure was then arranged for Monday.
In typical form, Nick has charmed everyone in his path during these appointments, procedures, blood draws, and scans. I was able to be in the room with him during his biopsy (which - by the way - he did under local anesthesia only, because he hates IVs). I held his hand and kissed his forehead, while he maintained a witty banter with the radiologist and rocked out to Enya. The ultrasound team all seemed to linger, even after it was time to go.
As Sandra mentioned, preliminary biopsy results were given to us yesterday by the surgeon. The tissue they removed from the liver appears to be an "undifferentiated" cancer. So, they cannot tell us yet if the tumor began in the liver or the gallbladder or from somewhere else in the body and traveled to the liver as a second home. Nick will be having a PET scan Friday morning at Skagit Valley Hospital, which should help us sort some of this out.
It is still unclear if surgery or chemotherapy will be the next step. But, we are all extremely anxious to get treatment started. As many of you already know, I have one year left in my oncology training. It is ironic, yes. It is both a blessing and a curse. And if I never practice oncology after all of this is over, my training has already been worth it - simply because I can translate this medical information for my family right now, explain the fine print, and hopefully be somewhat useful in navigating through the complicated and crazymaking worlds of cancer and hospital systems.
Lastly, I wanted to let you all know that despite his discomfort, Nick has been exactly the same old Nick. He is as hilarious as ever.... loving and gentle.... full of musings about the world, about life, about our family and our bodies. I know that we all love Nick. But my heart is truly bursting at its seams with love, respect, and admiration for him right now. You all would be so proud and amazed at his ability to take all of this in, with such grace and dignity and calm.
It goes without saying, that my heart is absolutely broken.
With much love,
Michal
Our mom was visiting me in Philadephia last Friday when Sandra called us with the results from the CT scan. I am very glad that I was with Mom when we received the news. We immediately arranged to fly home the next day.
As luck would have it, my best friend from medical school, Richard Ha, happened to be in Seattle for the weekend. (He normally resides in NYC and pretends to be a radiologist.) But instead of visiting friends, Richard and Bryan Benson spent their Saturday at the UW emergency room, making sure Nick was seen by the right people, handled with care and entertained appropriately. :) His biopsy procedure was then arranged for Monday.
In typical form, Nick has charmed everyone in his path during these appointments, procedures, blood draws, and scans. I was able to be in the room with him during his biopsy (which - by the way - he did under local anesthesia only, because he hates IVs). I held his hand and kissed his forehead, while he maintained a witty banter with the radiologist and rocked out to Enya. The ultrasound team all seemed to linger, even after it was time to go.
As Sandra mentioned, preliminary biopsy results were given to us yesterday by the surgeon. The tissue they removed from the liver appears to be an "undifferentiated" cancer. So, they cannot tell us yet if the tumor began in the liver or the gallbladder or from somewhere else in the body and traveled to the liver as a second home. Nick will be having a PET scan Friday morning at Skagit Valley Hospital, which should help us sort some of this out.
It is still unclear if surgery or chemotherapy will be the next step. But, we are all extremely anxious to get treatment started. As many of you already know, I have one year left in my oncology training. It is ironic, yes. It is both a blessing and a curse. And if I never practice oncology after all of this is over, my training has already been worth it - simply because I can translate this medical information for my family right now, explain the fine print, and hopefully be somewhat useful in navigating through the complicated and crazymaking worlds of cancer and hospital systems.
Lastly, I wanted to let you all know that despite his discomfort, Nick has been exactly the same old Nick. He is as hilarious as ever.... loving and gentle.... full of musings about the world, about life, about our family and our bodies. I know that we all love Nick. But my heart is truly bursting at its seams with love, respect, and admiration for him right now. You all would be so proud and amazed at his ability to take all of this in, with such grace and dignity and calm.
It goes without saying, that my heart is absolutely broken.
With much love,
Michal
Wednesday, March 4, 2009
My first blog
As Nick mentioned below, we have been overwhelmed with a wave of positive energy since last Friday when we discovered that Nick's discomfort was most likely much more than we had bargained for. We have set up this blog to keep everyone who is interested in Nick's progress up-to-date with current information.
As many know, today we had our first meeting with the surgeon. It was not as informative as we would have liked it to be. Dr. Yeung has ordered more tests that will hopefully be complete by our next scheduled meeting which is Tuesday the 10th, and we are also hoping to get an initial consult with the oncologist on Thursday the 12th. Seems so far away, but these docs can't really make any decisions regarding treatment until they have the entire picture in front of them. As much as we want them to go in and take out the bad stuff as soon as possible, we trust that they are experienced in this and know what is best for Nick.
Again, thank you all for your support this past week. It means a lot to us that you are all on our team.
Sandra
As many know, today we had our first meeting with the surgeon. It was not as informative as we would have liked it to be. Dr. Yeung has ordered more tests that will hopefully be complete by our next scheduled meeting which is Tuesday the 10th, and we are also hoping to get an initial consult with the oncologist on Thursday the 12th. Seems so far away, but these docs can't really make any decisions regarding treatment until they have the entire picture in front of them. As much as we want them to go in and take out the bad stuff as soon as possible, we trust that they are experienced in this and know what is best for Nick.
Again, thank you all for your support this past week. It means a lot to us that you are all on our team.
Sandra
Thank you all for your support
What an amazing outpouring of support we have received from our family and friends this week. I join my loved ones in thanking everyone who has expressed concern since last Wednesday. As you may know, I was evaluated on Friday morning for what was thought to be gallstones. After my ultrasound, a CT scan was done and it showed possible gallbladder cancer. The doctors also told us it had spread to my liver. I had a liver biopsy done at the University of Washington on Monday, and they were right.
We are awaiting confirmation from a PET scan that will let us know exactly how far it has spread. The gallbladder sits just behind the liver and is essentially a holding bin for the bile produced by the liver. Gallbladder cancer is very rare, but it is always found in the company of a gallstone. My doctor first thought he saw gallstones on the images, and he probably did, but next to the gallstones was a large abnormal area, called "a "lesion."
I am not a doctor guy. I dislike them. For me to visit the medical center requires lots of prompting from family and friends. I didn't think my pain was acute enough to complain about, let alone to waste people's time. If people hadn't noticed me looking "stoved up" over the past month, I would have carried on doing chores and house projects. Looking back since Christmas, I have felt a touch woozy after most meals, but not enough to write about in a blog...until now. My point in this paragraph is that there were battles being waged inside my body well before I recognized any symptoms or pain.
I will keep you all updated as more information comes along....
Thank you all again for your love and support.
Nick
We are awaiting confirmation from a PET scan that will let us know exactly how far it has spread. The gallbladder sits just behind the liver and is essentially a holding bin for the bile produced by the liver. Gallbladder cancer is very rare, but it is always found in the company of a gallstone. My doctor first thought he saw gallstones on the images, and he probably did, but next to the gallstones was a large abnormal area, called "a "lesion."
I am not a doctor guy. I dislike them. For me to visit the medical center requires lots of prompting from family and friends. I didn't think my pain was acute enough to complain about, let alone to waste people's time. If people hadn't noticed me looking "stoved up" over the past month, I would have carried on doing chores and house projects. Looking back since Christmas, I have felt a touch woozy after most meals, but not enough to write about in a blog...until now. My point in this paragraph is that there were battles being waged inside my body well before I recognized any symptoms or pain.
I will keep you all updated as more information comes along....
Thank you all again for your love and support.
Nick
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