Plans and Donations   June 5th, 2012

For all our anal retentive planning, this I was not prepared for…
Requests for when service/memorial might be, or flowers, or donations.

So first of all here is the plan discussed with Jake. Jake is being cremated.

His ashes will be divided into three portions.

  • One will be taken back to the Czech Republic so that it can be placed with his ancestors and be near his parents who live in Prague.
  • Another will remain in the US. We are currently working on these plans but are hoping for a place in Auburn, NH as that is the town we were married in and the resting place of my grandparents who loved Jake dearly. Originally, we had thought some kind of scattering but our son, Bas, has requested a stone/urn so he has some place to call his Dad’s.
  • The last will be returned to Bonaire for a scattering in the sea to occur sometime in the fall; we are thinking October. We will let one and all know when we have definite plans so you can join us at the beach.

And a slight variation on Jake’s wishes, we are making up small pocket stones with his name on them to be left at various destinations around the world, so that Jake can continue to travel with us. He started a list with the children during his last hospital stay.

The kids and I will likely remain in the US for the summer and return to Bonaire in the late summer/early fall. We have no definite dates but plan on taking our time and spending some of the tough special days ahead like birthdays, Father’s Day and our anniversary close to the support of family.

Anybody that wants to contact us, our home in the US is:
73 Derry Road
Chester, NH 03036
or of course, you can email me at

Donations can be made in Jake’s name to any number of places. Here are a few suggestions that quickly come to mind.

Support Bonaire, Inc.
Near and dear to our hearts, we started this US charity to fund various non-profit organizations on Bonaire.

Massachusetts General Hospital – Melanoma Center
Most of Jake’s care was under the direction of Dr. Keith Flaherty at MGH in the Melanoma Center. I cannot say enough good things about all the people that helped and cared for all of us at MGH, Concord Hospital, and NCI in Bethesda. If I started naming names, I would forget someone and feel badly about it. MGH has many clinical trials and researchers working to find a cure.

and last but not least…
Community Hospice House in Merrimack, NH
This hospice is a not-for-profit VNA. They are wonderful people doing an amazing job at end of life.


Tell a Story, Share a Smile   May 31st, 2012

from Linda

One of the counselors here suggested we write down some of the stories Jake’s visitors have been sharing. I smiled and showed her this blog, … told her bout BT, …and the crew on Facebook, … and not to be forgotten – the dozens of people that have contacted me privately. Add to that the notebook, Krystyana and I picked up the first day we arrived at the hospice which we ask each guest to sign and date, and words to share with us but only if they feel up to it. I can’t imagine there will be too few Jake stories :-)

My parents vistied again last night. My mom said “I  can’t believe how many have left messages on the blog – so many people.” My mom has always grinned at Jake and called him her favorite son-in-law (her only one). Jake would laugh back and hug his favorite mother-in-law.  Being smaller than me (and my dad not much taller than me) my mom saved all her “tall jobs” for Jake.

A  brief story from only a few days ago, I was sitting by Jake’s bed side, just holding his hand and looking out into the garden. A deer walked by, oh about 20 feet away. She paused, scampered around the corner and paused again where I could see her through another window, and then off she went. This morning I strolled through the garden with a hot mug of coffee in my hand. I stopped to lift a peony to my nose and inhaled deeply. This is a good place to find peace.


Posted in Family, Health | 62 Comments »

Nearing the End   May 30th, 2012

from Linda

We wait, we make him comfortable. He was alert briefly this morning and knew I was there. Since then, they have started him on a pain reliever infusion because he cannot swallow as he must. So the end is near but still unknown.

Bas has fallen asleep in my lap as we share some quiet time together while Martin and Krystyana are out getting more Coke Zero to sustain us.


Posted in Family | 89 Comments »

Tired   May 29th, 2012

from Linda

I spent another night keeping Jake company. He has become restless and frustrated, unable to get comfortable. The nurses tell me it is very common and quickly began trying to ease the restlessness. But it took almost 4 hours to find the right combination and dose of drugs to make that happen. Jake  is snoozing again after waking briefly this morning to let me know he was cold.

Jake has also lost his interest in lots of foods. I’m not sure he managed even a bite of our second attempt to get him sushi. All and all things are going faster than I had hoped.

Please know if anyone does desire to visit you are always welcome. Just know that Jake is quite groggy and unable to engage in lots of socializing. I have been letting Jake know the names of all those that have commented on the blog, Facebook, BT, emails, and such. Many names have produced smiles and grins, while others a little sadness or weeping as he would have liked to have seen you all one last time. Of course, it would have taken years for Jake to have had shared that last meal with you all.



Posted in Family | 66 Comments »

Calmer and Visits with Friends   May 26th, 2012

from Linda

Only a short note today, the hospice was a good move. We all slept better knowing Jake was there and being well taken care of. And most important, Jake slept better.

Friends have started dropping by for short visits and long. Jake, my social butterfly, my cruise director of life, brightened up and enjoyed himself immensely catching up with all, drinking a toast, sharing a meal, and even enjoying music and song. I think a total of eight visitors today. We bought Jake a guest book to remember these moments.

Although Jake has not been reading all the blog comments or Facebook posts, I have been sharing with him all the people’s names and shown him the photos from the past. We had the smiling weepies a dozen times but that is all good. Jake is feeling the love and so are the kids and I. Thank you for the reminders of so many amazingly great times we have had together.


Settled in Hospice   May 24th, 2012

from Linda

We moved Jake as planned this morning at 11am. The hospice coordinator worked some magic and our insurance coverage was cleared in just a couple hours.

Jake is at:

Community Hospice House

210 Naticook Rd

Merrimack, NH 03054

room 109, Please do not call Jake on the phone as this is stressful for him to answer it. Family or those visiting can call the main number and speak with the staff 603-595-5688.

Many people have asked what they could bring or send us. Jake still loves his food but just much less of it in terms of volume. Another thing Jake had hopes do was starting something he called 10 Days Left. It is not about dying but about what would you share with the world ,your family, etc if you knew that was all the time in the world you had left. I hope I have phrased it right. He wanted to know  the important lesson of life, things that have made a huge impact but might have seemed unimportant at the time. We’ve had a lot of these discussions lately and maybe when I’m less weepy I can share some with you all. Needless to say , we’ve had little regrets about all our traveling and eating adventures :-)

Hugs to all that need them, Linda


Another Day and Another   May 24th, 2012

from Linda

Jake is adjusting to the hospice well. I got to overnight with Jake Saturday night which gave us private time together . We’ve had lots of visitors and Jake keeps us hopping for various foods like Mexican, Brazilian and Sushi. Jake is doing better than I am in remembering the details of everyone’s lives. :-) And we have had several friends visit that go back almost 30 years, pretty impressive.

On Sunday, they started Jake on a new medicine to help him with word confusion/frustration – trying to find the right word. Although drowsiness is not a side effect, it seems to help patients relax so the first couple days they are sleepy and are able to catch up on some much needed sleep.

We are taking a leisurely morning (Jake is napping) as we are expecting an energetic visit from our niece and nephew today.


from Linda

I delayed posting this blog entry as we tried to reach family members with the news.

As I mentioned in my previous post, Jake suffered three serious seizures in the course of an hour on Monday. The EMTs were able to administer medication to ease the third seizure as they already had him in the ambulance when it started. We are thankful for that.

But these seizures are a sign of the future and that future will be short. We met with a Palliative Care professional from the Elliott Hospital yesterday afternoon. We talked about what the situation is and our expectations. Jake asked the tough question – how long? The answer – days to weeks, not months.

We voiced our desire to have Jake with us at home as long as possible. The kind Lisa gently explained about the seizures getting worse and more frequent as time moved on. Although we could have VNA and Hospice care in our home, it would not be 24/7. When Jake suffers his next seizure, it would take precious time to get the medicine necessary to ease the seizures effects. If we place Jake in a live-in Hospice situation, the medical staff there would be able to address his needs immediately. As one of four family members who witnessed those seizures, I cannot convey how terrifying they were. And add to that Jake was conscious of what was happening to him and his terror was evident. The decision has been made to find a bed for Jake in one of the three NH hospice units. Our house in Chester seems to be smack dab in between them all. We are hoping for the one in Concord, NH as my family lives nearby and that would help during this time.

Now for a little good news, Jake is not in pain and has not required any pain medication. So while he is tired and weak, his humor still shines through. Yesterday, Jake had a Five Guys burger and fries for lunch which impressed the staff. Last night when it came time to order from the hospital menu, Jake said “If this is one of my last meals, I’m not going to eat hospital food!” On request, we got him Haddock Fish and Chip, fried scallops and shrimp with lots of tarter sauce from The Weathervane. Following this thought, I got a Lazyman’s Lobster to make sure Jake’s last lobster wasn’t that icky fried stuff we had on Sunday. For dessert, another trip out for soft-serve chocolate and vanilla twist ice cream. This morning we are slow cooking baby-back ribs for his lunch.

Jake has also started a travel list with the kids of all the places he wants us to visit for him. Of course, the polar bears top the list, although more than a couple dozen places and sites have been discussed.

At this point, Jake is okay to have visitors as long as the visits are relatively short. While he is at Elliott, the visiting hours are 12noon-8pm – more info at We don’t have a time frame for the move to the hospice. Please let me know if you plan to visit so I can keep you updated should anything change.

11am update
We just heard that Jake definitely qualifies for in-house hospice care but currently there are no beds available in Concord, NH. We are looking further afield in Merrimack and Dover.