A Tough Day Followed by Tough News   May 23rd, 2012

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 www.elliothospital.org 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.

 

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This entry was posted on Wednesday, May 23rd, 2012 at 11:14 and is filed under Health. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

73 Responses

May 24th, 2012 at 05:55
Ethel Says:

Dear Jake, Linda and family
I’m stunned and so sorry to read this news. Your way of dealing with this difficult and often frustrating situation over the past year was inspirational. In the tough moments that are ahead now, remember that you’re in the thoughts of people all over the world.
Warm regards,
Ethel

May 24th, 2012 at 07:22
Ellen Horne Says:

Sending my love to you guys during this last part of the Journey. You have all been so brave through all of this. I love the umph with which you team up and attack! I so appreciate hearing the details. My love goes out to Jake and especially to you, Linda, as you make this life together delicious and precious in every last moment. Please give Jake a big hug from me. He’s an inspiration and I feel so lucky to know him (and his amazing family!).

May 24th, 2012 at 08:42
carol Says:

Dear jake and Linda, I only know you through the postings. I have been following your path through Melanoma since last year. I am so sorry to hear the latest news. My husband was diagnosed last Sept. with stage Iv then. We lost him to this terrible disease in January. My heart goes out to you and your family.
Carol

May 24th, 2012 at 09:22
Todd Klukow Says:

I read today with a heavy heart, dear friends. Your impact on the world and those you have touched in substantial. Most people only dream of having the type of profound impact you have made. Your keen intellect and curiosity continually amaze me, but your most inspiring feature is your easy manner in which people naturally gravitate to you. That instant and implied trust is a true gift few people have. I will remember fondly our time together and care that with me for the remainder of my life. Thank you for allowing me to catch a ride on part of your journey through this world.

May 24th, 2012 at 09:26
Adam & diverdebbi Says:

Our thoughts and prayers are with you and your family..think of the clear blue waters of Bonaire and be at peace….

May 24th, 2012 at 09:58
Ed and Liz Ginocchio Says:

Jake, Linda and Family,

Such difficult news, taken by your family with such dignity. You ALL are amazing. Ed and I think of you all often, and have prayed as well. May God provide you with the support you will need in the coming days/weeks. Jake you are an amazing person, who has left an amazing mark on this earth, which will last forever. We truly love you all so much. The heavens will be welcoming a very special angel!

Liz and Ed Ginocchio

May 24th, 2012 at 10:42
Rolf Says:

Not surprised to read that Jake’s humor remains. I pray for pain free throughout, and that G-d’s plan is for this suffering to end. We love ya…from Bonaire

May 24th, 2012 at 10:52
sue w Says:

Keep the humor, it helps. Celebrate your time together, spend every moment together! Review all your time together. Plan, the future…………..

May 24th, 2012 at 11:51
annette and trevor Says:

Jake Linda and family

our thoughts go out to you at this time-its good that Jake can keep his humour going-Annette still remembers his bear hug when we met you 2 at oakwood station uk-memories,such nice memories–peace be with you-Trevor and Annette

May 24th, 2012 at 11:56
Greg from vienna, austria Says:

13yrs ago we met on Bonaire. Linda and you were going abroad while I was housesitting together with bianca your beautiful sunset-dive-spot. You said:” Feel at home, raid the frigde”. A couple of months later I was back and we were sitting on the pier of kralendijk watching the sunset and then YOU SHOWED ME MY FIRST GREEN FLASH!!!! Thank you very much for everything.

May 24th, 2012 at 12:06
Kelly J Says:

Oh Jake, what sad news, but not entirely unexpected given the recent developments. I’m sure that doesn’t make it any easier, though. I’d like to get up for a brief visit on Saturday. I’ll check in here before I leave to see if I’m going to the hospital or to a hospice. XOXO to you, Linda, Krystyana and Bas.

May 24th, 2012 at 13:08
Tish Says:

I echo the words from everyone else of love, grief, consolation, gratitude, and admiration, but I also am so pleased, Jake, you’ve recovered your appetite! So glad you retain enthusiasm for pleasure. Hold onto that. And wonderful that you are planning trips for the family. Thank you so much for the time you gave me at New Years, which I treasure, with all the moments, along with your wonderful photographs. Cherish each other!!! With so much love and so many hugs to all,
Tish

May 24th, 2012 at 13:28
Cheryl Says:

From another melanoma fighting family, peace and strength to you all.

May 24th, 2012 at 13:43
Tom C. Says:

Jake, Linda and family, thinking of you all. That is all I can say as I constantly shake my head in disbelief.

Jake, you enjoy every damned burger, ice cream and anything else my friend.

May 24th, 2012 at 13:50
jos van osnabrugge Says:

Dear Jake and Linda ,

The inevatibel sad news brings sadness to all of the people who’s lives you touched . BT and all its followers and all the worldwide friendships it created would not have existed without you. I feel very grateful for that and I want to thank you for that from the bottom of my heart. I hope your remaining days will be filled with the love and friendship flowing back to you in these hard days.

May 24th, 2012 at 14:12
Sherry Flumerfelt Says:

Jake, I’m so sad to hear the latest news, but inspired by your continuing sense of humor and appetite! I have such great memories of you from my Bonaire days – your big bright smile and laugh being one of them. I’m thinking about you all, and wishing you great strength and peace.

May 24th, 2012 at 15:40
Niki and Bob Says:

Dear Jake, Dear Linda, Dear Krystyana, Dear Bas,
Everything written by 66 people before me is what I want to say to you! I am just astonished and also humbled in the face of it all. What do we ever know for sure? That Jake, you have been an inspiration to many, a joy to the world, such a bright mind and body! Aww, I just love you and your addition to my life. Well done! And live on!

May 24th, 2012 at 16:34
Doug Dummer Says:

Jake, it has been many years since we last patrolled Mayo and Princeton Roads, and I was in shock to get this news today from Billy Kleinfeld. You and your family are in my prayers. I have so many fond childhood memories that include you and David…that big smile is unforgettable. Wishing you peace and serenity during this time.

May 24th, 2012 at 16:47
Mocky Arends Says:

Dear Jake and Kinda,
I am out of words but just want to wish you peace and strength from Conchita and I.

May 24th, 2012 at 17:52
Ali Gelles Says:

Sending big big B-I-G love to you all. Your calendar sits on my desk and I think of you daily. So grateful for your friendship.
xo Ali

May 24th, 2012 at 17:54
David Gelles Says:

My love to you, Jake. I’m remembering the last meal we shared together, at Morimoto in New York (http://www.flickr.com/photos/jakerichter/5327983295/in/set-72157625757006958) and the joy of those indulgent hours at the sushi bar. Thank you again for a great memory. Wishing you peace and strength. – David

May 26th, 2012 at 17:57
Sue & Brian Says:

Re the ten day thing. This has been on my mind for days now. The only thing I’ve been able to come up with is this – in the days still left, we’ll walk in fields of gold. My hope is that this is true. Fields of gold.

May 30th, 2012 at 00:05
Dianne Robertson Says:

I am so proud of your strength through tears of anquish. You are a most remarkable caretaker of your precious Jake. I found your blog when a FB friend requested prayers. My sincere prayer is that each of you continue to form a circle of love around Jake as he accepts the challenge set before him. May the peace of Our Lord be with you and comfort each of you.
Before my mother went to heaven, I prepared her favorite foods that she had previously denied herself due to cholesterol issues. She was thrilled with crispy bacon for breakfast and a pork chop at dinner. You are wise and thoughtful to prepare and to provide Jake’s favorite foods as the memory of performing these little things, that are really important things to the patient, will bring honor to your heart by realizing you did everything possible to assure his comfort.
May the presence of God be felt in Jake’s room.
With much love and tenderness,
Dianne Robertson