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

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

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.

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


\

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

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

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.

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

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!

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

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

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.

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.

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

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

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.

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. :)