Moving Forward

April 17, 2012

Hi All-

This is Katie, Jeff’s sister. I just wanted to give a quick update. I wanted to let everyone know that I have posted the video for Jeff’s living funeral here:

http://www.youtube.com/watch?v=e12YXBI8MPQ

I also wanted to let everyone know that we Welcomed Emma, Jeff’s newest niece into our Family on February 28th. I developed preeclampsia due to the stress of losing Jeff so she joined us 3 weeks early, which was just 3 weeks after we lost Jeff. Emma, whose name means whole or complete, has helped give us a new focus. Our home felt so quiet and empty so she has helped to add new life. We have turned Jeff’s room into a beautiful Unca Playroom for the girls and Lizzy just adores it. I’ll post photos of that soon- all of the images from the room are from the book Jeff wrote for Lizzy “Welcome Welcome Little Star”.

As I mentioned before Jeff donated all profits from his book to The Neema Foundation, a non-profit I run that builds computer labs in Africa. We are currently at work planning a Jeffrey Stone Memorial Lab which we hope to have built in the next few months.  Please consider purchasing a book and helping to support this wonderful tribute to Jeff.

He is forever in our hearts,

Katie

 

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Jeff’s passing

February 21, 2012

This is Katie.

It breaks my heart to let everyone know that Jeff passed away February 2nd, at about 11:30pm. He died at home with us, laying cuddled in bed with me while I read to him.  Jeff was ready to leave this world and he was at peace and he actually had a very peaceful death. His best friend, Cale, was in the room with us and after reading the chapter I just looked at Jeff and realized he was gone.

Even now I am so torn by Jeff’s passing. Jeff was ready to go, his body was done and as time went on he had increasing discomfort. His last day was extremely tough. But as happy as I am to have him be out of pain its still so hard to have lost Jeff.  His prognosis changed so quickly that it really took us all by surprise and although we knew that one day we would lose him I don’t think any of us were prepared. Even on New Years Eve, just a week before he was admitted into the hospital with a GI bleed, I felt like we had more than 6 months, and I don’t think any of us conceived of him not living to meet his new little niece who we are expecting in March.

I am so thankful though for the time we had together. Jeff was truly the bravest person I have ever known. He fought courageously for 3 years, and not just for time for himself, but for time for all of us.  He faced each challenge or surgery with true bravery, he never complained and he never once asked why me. He often feared that the cancer would lead to an early death but he always took on each challenge with full intent to defeat it or at least die fighting.

I know Jeff always provided a lot of medical details in his blog updates and I had started to write that update after he got out of the hospital but honestly it was so hard to not only find the time but also to know what to write. When Jeff checked out of the hospital he really looked like he had days but he then went on to really improve and he ended up living another 18 days. The roller coaster of not knowing how long he had made it very hard to process. I will try and post details of exactly what happened later but its just too hard right now.

One of the things that brought Jeff the most peace was his celebration event that we held on Jan 15th, the night he was discharged from the hospital. I had personally never heard of a living funeral but it just seemed like it would be such a waste for us all to gather days after losing him to stand in a room and talk about him when instead we could tell him. Jeff liked the idea and we were thrilled with the turn out. People had 24 hrs notice and there was a snow storm coming in and yet the room was packed and we had over 15 people who flew in for the event to share their memories with Jeff and say good-bye. As most of you know Jeff wasn’t one to really say he liked something but he told many of us in the days after the event how much it meant to him. My husband asked Jeff just a few days before he passed if he had any guidance on how to come to peace with your own death for when his time came and Jeff replied that he highly recommended having a Celebration event. It was a beautiful event and we had a friend record it on video and I’ll be posting that link in the next week for those who want to watch it. I know I personally learned so much about Jeff and who he was from hearing how others viewed him and it was a real gift to get to hear all of the stories that were shared. Its also been very comforting for me since his passing to watch videos of Jeff from our many adventures over the last several years so I’ll make sure to post some of those highlights as well.

Jeff spent a lot of his final days tying up loose ends, saying goodbye to friends and leaving a few legacy videos for Lizzy, his niece. One of the most beautiful things he did was have the opportunity to read Lizzy the book that he wrote for her. Jeff wrote the book about a year and a half ago when we were on a family vacation in Hawaii. After listening for days to us read her the books we had brought with us Jeff decided to write her his own book. Its called Welcome Welcome Little Star and it was published on Amazon just days before his death. He was quite happy to be a published author and was excited that this was completed. (A HUGE THANK YOU to KATE KOLESAR who beautifully illustrated the book and to RICK KOLESAR who did all of the final paperwork and logistics to get it published) Jeff was able to read Lizzy a published version of the book just days before he died. It was a very special gift and reading her his book that he made for her is now part of our bedtime routine and is helping her to cope with her loss of her “Uncas”.  Lizzy talks about how much he loved her because he made a book for her. I know Jeff would be honored to have you purchase a copy of his book. He asked that all proceeds go to support the Neema Foundation, a non-profit I founded that builds computer labs in Tanzania. It is my hope that with the funds we will be able to build a Jeffrey Stone Memorial Computer lab. We have also decided to turn Jeff’s bedroom into a playroom for the girls, something I think he would love, and are using the images from his book to decorate the room.

Jeff’s final wishes were to be cremated and then to have his ashes buried in a Cemetery. He designed his tombstone which is just so Jeff- swords coming out the top, a glass orb and a little drawer for people to leave him notes and things.   Pedro and I found a beautiful plot for him at Lakeview Cemetery on Capital Hill in Seattle. It is one of Seattle’s oldest and is the final resting place for many of Seattle’s pioneer families as well as Bruce Lee (we thought Jeff would like that). It is also a popular location for Japanese to be buried. We thought with Jeff’s love of Japan that it would be a wonderful place for him and we found a beautiful plot by a tree overlooking the lake and mountains. Jeff’s tombstone will take several months to make so he will be placed there late this summer for those who would like to visit.

Jeff told us who to give a lot of his things to but there were a few miscellaneous items that are so Jeff that we want to ensure have a good home but don’t know who to give them to. I’ll be posting a list with photos soon with items that we would love to go to his Friends who would enjoy them. For example there are several manga wall scrolls, some games and of course his cosplay Blue Mage outfit. Please let me know if you are interested in any of those items.

And finally a thank you. I have so many people to thank really. First of all- all of you who have read  this and all of his friends. You helped give him the strength to fight every day. I would also truly like to thank everyone who attended his celebration event. As I said this event really touched Jeff and I am so thankful that this helped him to find such peace. I’d also like to specially thank Alissa for staying with us for 10 days when Jeff got home from the hospital- it was an overwhelming time and having you here to support not only him but all of us was amazing and I know he really enjoyed having that time with you. A Thank You as well to his fellow students and teachers at ASU who helped to get Jeff a honorary PhD- he was very proud of this and we do intend to put Dr. Jeffrey Stone, Ph.D on his tombstone.  And finally, but most importantly, his best Friend Cale and his fiancé Molly. I simply don’t know what we would have done without them. Cale helped Jeff so much during his final weeks- they spent long hours in conversations about life and death and those discussions and debates really helped Jeff come to terms with everything and prepare to move forward into the next life. Cale has been Jeff’s best friend since 2nd grade and was his life long confidant and Cale was really there for Jeff night and day during this. Cale and Molly visited daily and actually stayed with us during  what was Jeff’s last week. The love and support that they showed not only to Jeff but to my whole family was amazing and it was such a gift. I personally don’t know how I could of survived Jeff’s last day without Cale and Molly and I know that it brought Jeff great comfort to have them with him in the end.

As hard as it is to lose Jeff I am so thankful of the time we had together. Jeff could have died years ago or in an accident and we never would have had the opportunity to really live these last 3 years enjoying each other and each moment. We all take life so for granted but Jeff taught us to really live every day- we celebrated, had dance parties with Lizzy, traveled, built forts, ate dinner together every night as a family and just enjoyed the daily random moments in life. We didn’t realize how quickly our time with him would end but we did make the most of it and for that I am so thankful.

 

Again thank you to everyone for all of the support for Jeff. You are all amazing. Jeff made sure that everything he left Lizzy  made sure to tell her to enjoy the journey, so I ask you all to do the same. Life is simply too short, none of us know how long we have, so go out and live the life you would if you had only weeks/months to live. Jeff did and I know he felt that although his life was short, that it was well lived.

-Katie


A celebration of LIFE

January 14, 2012

This is Katie- the below was sent to our friends and family this afternoon and extends out to Jeffs readers. I’m hoping Jeff will have time to update but overall his physical health has had severe delicne over the last week. A week ago we were looking at 6 months- today he is fighting for each day. Please join us if you are able.

 

As most of you know Jeff is nearing the end of his 3 year battle with cancer. He is fighting for every day and we are asking you to join us as we gather together to Celebrate his life. I am so proud of the bravery and courage Jeff has shown over the past year. Please join with our family to show him support and shower him with love to help give him strength for the road ahead.

 

The Celebration will take place Sunday January 15th  from 6-9pm at McCormick & Schmick’s Harborside on Lake Union.

 

If you have any photos that you would like to have included in the photo slideshow please e-mail them to ashleyaverett@hotmail.com who is helping coordinate.

 

McCormick & Schmick”s Harborside on Lake Union
1200 Westlake Avenue North
Seattle, WA 98109

 

We hope you can join us,

Katie & Jeff

 


Ascites

December 20, 2011

So let’s see. Surgery went OK. We’re not sure how the window is holding up but I expect it’s doing well and will be getting my follow up scan soon. I haven’t heard back about any of the biopsy info yet either. The chest tube caused me a lot of pain and stayed in for quite a while, it also developed the annoying quality of leaking chest fluid all over the place. That at least has finally resolved. Pain was a real issue for a while there but I got them to let me onto my normal at home oral pain meds and that helped tremendously.  Still I was having a lot of trouble sleeping so we pushed me home pretty fast and I think being home helped me sleep a lot and that sleep I think is very helpful.

So I made a very stupid choice. My latest CT scan showed enough growth that we figured we should swap my treatment, and since we didn’t want to stress my system too much around surgery we stopped my Interferon for just over a week. My neck tumors have exploded in size and I suspect the other ones did too. I had to restart the drug because I was in too much pain. For example the tumor in my left neck feels like it started to grow into my arm and cheek. The stupidest part of this is that we finally settled on a treatment of low dose IL-2 and Interferon in the end, so there was basically no reason to drop the interferon at all. Basically the treatment is going heavy on immune response modulation. I’d want high dose IL-2 instead but my body isn’t holding up very well right now so that’s a bit of a fantasy.

I want to make clear to everyone that I am entering a treatment plan I am happy with for the moment, though will probably always be pressing for higher doses or additional drugs. My mom is telling everyone that my doctors are keeping me from doing the medication I need. This is not true; they had suggested a different drug before but now have changed their minds. She got her heart set on that drug and now thinks I’ll die without it. She also cannot comprehend the idea that interferon does some good even if not enough to cure me; she believes everything that doesn’t outpace the cancer is only making things worse. It is true that the interferon does cause some problems but I think the extent to which it does control the cancer is amazing. I am also a big fan of immune therapy so I want to try this combo.  But in all seriousness please disregard most of the worries my mom may spread to you, she has lost view of the situation. She doesn’t even trust my doctors now and is trying to find me new ones, even though Katie and I are fine with our current doctors.

So a new problem is actually causing me more trouble than the rest of my healing. Apparently before surgery they saw I had ascites, which are fluid pockets in the abdomen, but I guess they didn’t care enough to tell me until after surgery. Anyway it turns out that some of my old belly pain was probably due to that, now I’m having a lot of belly pain from it. I’ve gone in twice to get it drained already and am going in tomorrow morning to do it again. They’ve pulled out like 1.2 litters the first time and 1.5 litters the second. Apparently people with bad swelling can get like 25 litters but I find that absurd, I’m so skinny that 1.5 makes me look pregnant and makes my belly ache. I’m worried the TPN is partly to blame because IV fluids cause odd water retention and swelling and stuff. The ascites itself is either from some organ doing badly and leaking, like the liver or kidney, or tumor could be secreting fluid like it was doing around my heart, or it could just be an inflammatory response, which might in part be due to interferon but then we would have expected it to improve when I was off interferon. Anyway hopefully we can find a solution besides just draining it every few days, which is very inconvenient and quite annoying since it involves a needle into the belly. I’m kind of hoping they’ll just put in a valve so I can drain myself off if pressure grows. But we need to do something, because the pain is my current biggest pain, it keeps me up and night and you’d better believe it impairs my ability to eat.

 The last real medical thing to mention is extremely embarrassing. When I was healthy I could stand from the ground with one leg under me and the other held straight out parallel to the ground. That level of leg muscle was something I was really proud of. Now I have reached the point where if I fall I cannot stand. I have been hospitalized too much recently and my thighs have atrophied. I have trouble on the stairs and think that without support items like chairs to pull up on I would never be able to stand from sitting on the ground. We’re relying on my wheelchair a lot now too for extended trips, though that’s only partly my legs and more due to the fact that I have pain from the ascites.

On the plus side Christmas is on the way and we’re spending some decent time together. I have had my energy levels pick up the last few days so I’m doing a bit more. We found out recently too that the local pottery painting store has a cool ability to make melted glass crafts. Katie and I both enjoy crafty kind of activities so she has made several ornaments and plates and stuff, Lizzy has helped paint a few figures and made some handprint ornaments and I have painted Lizzy a penguin piggy bank and made her a melted glass butterfly and Katie is getting a melted glass frog. I’ll post pictures when I have some. Also awesomely on the xmas front I know I’m getting a lot of fun things. (Mom doesn’t know how to use Amazon, which is where my wish list exists, and so I had to help her buy stuff. I’m really looking forward to those gifts.) Anyway I’m really looking forward to Christmas eve, assuming my health doesn’t mess things up I think it could be one of the best in a long while, especially because this is basically like Lizzy’s first real Christmas. She loves the holiday atmosphere. She loves the lights, and I open an advent calendar with her (she loves the chocolate), and she’s playing with Santa and reindeer toys and all that kind of stuff. It’s super cute and Christmas is always coolest for and around little kids.Image


Surgery update

December 8, 2011

This is Katie, Jeff’s sister. Surgery went well. In addition to getting the window the team placed a Hickman line do that Jeff can get TPN ( IV nutrition). As all to frequently happens Jeff’s pain levels 1 day post were pretty hard but he’s on a better regime now and is looking much improved. He’s just Exhausted from not being able to sleep due to pain.

No ETA yet for when he’ll be home. Still high chest tube output and his white blood cell count is up so they are watching him closely to make sure he’s now developing a infection.

Thanks,
Katie


A Window To My Heart

December 4, 2011

Hey everyone. I’m really behind right now on posts and a lot has been going on recently. So first off I got a new CT scan the other day and it showed growth pretty much everywhere. I don’t think the growth is massive, and clearly the interferon is slowing down the tumor but it’s not stopping it so we absolutely must find something else to do or something to add to the current meds. Fortunately I basically expected as much was happening so we have been looking into other options a bit, we’re still not sure what we will decide on however. Most of the growth by the way seems to be in my chest under the rib cage and some nodes in my belly. The nodes in my neck shrink and grow but largely remain consistent.

So a bit more pressing is the condition of my heart. I went in for a checkup echo a few weeks back and the big old hole they put in my pericardium has sealed up. This is not a good thing. The cancer may have played a role in it sealing back up but it also might have been natural healing that is to blame, either way there is fluid building up again. I’m scheduled for surgery on Tuesday to open up a new window. This one will go through my rib cage for access and will drain the fluid into the sac around my lungs. It’s a bigger surgery than last time but it also shouldn’t heal nearly as easily. I have to admit though I am very worried that minor cells in the fluid will implant in my lungs and cause lung tumors. That idea really freaks me out. The doctors say it shouldn’t happen but still…

 So besides that I’ve been in a good amount of pain and sleeping a lot. My interferon has been causing stomach pain and occasionally I feel the cancer growing in my back, belly, and neck. The cancer pain I can mostly control with narcotics. I also just recently figured out that the stomach pain can be largely helped by NSAID pain meds since it seems to be inflammation based. Unfortunately I learned this a very short while ago and barely got to use it because I now have to stay off blood thinners for pre-surgery prep. The stomach issues are really quite bad. Medical pot couldn’t even help me choke down my thanksgiving dinner. It’s not so much nausea as pain and failure to digest material. I barely ate anything for several weeks and I have lost a ton of weight. I also vomited at the drop of a hat for a few days; which we think might have been due to a tiny stomach cold since Lizzy and Katie didn’t do so hot either. I no longer have a butt and all my pants fall off, that’s how thin I’m getting. I’m looking forward to being post-op so I can take aspirin again. I also will be getting TPN (IV nutrition) while I’m in the hospital and maybe for a while afterwards just to bolster my reserves a little. I really don’t expect to eat much in the hospital.

One other piece of somewhat good news is that I will be getting new tissue samples from this upcoming surgery including trying to get a piece of the lymph node under my ribs as well as pericardium wall and fluid samples. We want to see if the tumor has changed in any significant way or if it differs at all from the nodes elsewhere in my body. Knowing that may help us pin down some kind of treatment that may work.

Well that’s about it. I haven’t been up to much. Lots of TV and sleep really. The holidays should involve more family time and stuff however. I’ll try to post as soon as I can after surgery, or I’ll ask Katie to do it for me.


Free From AZ (Soon)

October 19, 2011

So I got out of the hospital today. I ended up getting a drain put in that was removed just yesterday and kept draining out a few hundred ml of fluid every day. I’d have been free of the hospital sooner but the rate of draining was higher than they expected so they had to wait. They also cut a permanent hole in the wrapper around my heart so that all future fluid will drain into my chest and hopefully be absorbed by the membrane of the chest that encases everything; one of its functions is drainage. This is apparently a really common procedure but still a bit odd. You would assume since the sack exists around the heart it’s probably very important but apparently they leave them open whenever they do heart surgeries and they don’t see ill effect. I’m slightly worried that if there is cancer in the fluid then it will spread through my chest but they insist it won’t spread like that.

The stay itself was very boring with no real internet access and a broken TV remote. Luckily a friend bought me a universal remote to fix the second part at least. I slept a lot and did little else. The nursing staff was mostly good, not the best I’ve had but certainly not the worst. I did have a very worrying issue however. They almost killed me because of a typo. My meds said to take .75ml (75million units) but the conversion is actually .75=7.5million units. They tried to give me 10 times the dosage (7.5ml) because they chose to follow the units measure rather than the ml measure. I knew this was wrong right away but I almost believed the nurse when he told me it was probably just a different concentration; which could make sense. But instead I called Katie and had her tell me the concentration we have in the fridge at home. So I can’t say for sure that 10x my dosage would have killed me but it is far beyond what further research suggests a human use and it would most likely have caused multisystem organ failure such as kidney, liver, and pancreas. Even with my normal dose it turns out my pancreas numbers spiked and I got a 103.2 degree fever. It worries me a bit how easily that could have killed me. Also slightly worrying right now even though I’m taking the interferon every other day the spots in my neck are a bit touch sensitive, not outright painful but it’s still not a good sign. I may have to look into adding radiation or some new drug soon.

Anyway I’m flying home Thursday. My mom flew down to take care of me in the hospital and help me return to Seattle. I’m looking forward to being back home and seeing everyone up there. I’ve been sad that I was delayed so long returning to see my ferret; she is so new to us that I’m worried she’ll not remember me and think Katie and Lizzy are her owners. Anyway I have gotten reports that she is mostly doing well and that Lizzy loves her so that’s awesome. I hope to play with Lizzy and Yuki together asap. That’s about it for now; haven’t been up to much since I’ve been lying in the hospital bed this whole time. I’ll leave you with some pics Katie has sent me of Lizzy.