Light The Night

Tonight we participate in LLS Light the Night walk as Seth’s Solemates walk across the Brooklyn Bridge to raise money for research and help for those who are fighting this illness. If you would like to help please go to this link: http://pages.lightthenight.org/nyc/Manhattn11/KPalmer

In strength and love,
MOM

Blog Book in Print

We have had a very positive response from our posting about Surviving Leukemia, the book.  So many people have asked for a hard copy of the blog for reference.  It is available for purchase through Blurb for Good. All profits from the sale  go to Leukemia and Lymphoma Society.

Do you have questions that need answers or do you need to “really” know how a patient feels?  Surviving Leukemia can be of enormous help to you.

When you purchase a copy of this book,  Blurb for Good will donate an additional dollar for each book purchased.  You too can support the vital work of LLS with your purchase.                                                                   Go to http://www.blurb.com/bookstore/detail/1486083

Now in Print

Surviving Leukemia, Seth’s blog is now in print.  So many people have asked for a copy and now you can purchase it.  It is a win, win for everyone. Profits from the sale of this book will go to LLS.

Are you someone or do you know someone newly diagnosed with Leukemia?  Do you have questions that need answers or do you need to “really” know how a patient feels?  Surviving Leukemia can be of enormous help to you.

When you purchase a copy of this book, all the profits will go to LLS and Blurb for Good will donate an additional dollar for each book purchased.  You too can support the vital work of LLS with your purchase.  Go to http://www.blurb.com/bookstore/detail/1486083

Going forward

For those of you who still turn to the blog to see Seth’s smile and hear his words, I thought you might like to know how the family is doing.

Alan and Sheera have relocated and are beginning to find a sense of peace and stability in their lives that they so deserve. I too have relocated and am beginning to find a life that has meaning, value and purpose. We are eternally grateful for the ongoing support of family and friends.

Needless to say that our lives have been irrevocably changed but it does go on. I believe that the way to honor Seth is to have a good life, remember to smile and laugh and to do things of value that will help others.

I have become very involved with the Leukemia and Lymphoma Society in several ways. One aspect, that is very special to me, is their annual walk called Light the Night walk across the Brooklyn Bridge. It is a major fundraiser to support their vital work in research and patient services. This will be the second year that Seth’s Solemates will be participating. If you are interested in finding out more information please visit our team’s web page at http://teams.lightthenight.org/SethsSolemates to sign up for the walk. I can promise you it will be an evening you will always remember. If you are not able to walk with us, I would be grateful for your financial support. Please click http://www.active.com/donate/ltnNewYo/2449_kdpalmer to make a secure tax-deductible contribution. You will receive a confirmation by email of your donation. I will be notified as soon as you make your donation.

Checks can also be sent to:

Leukemia & Lymphoma Society
475 Park Avenue South, 8th Floor
New York, NY 10016

Please be sure to include Seth’s Solemates 2008 on the memo line of your check.

As always with thanks for all you have done

In strength and love,

Mom

Symphony for One

It has been a while since I have posted anything to the blog. At first I thought it was pointless but I realized that I needed to thank all of you for your love, support, compassion, friendship and tell you how much it has meant to me. These days are difficult and bittersweet. As I go through Seth’s things I see his smile, his look of concentration, hear his laugh, feel his presence. I don’t know when he wrote this, but I cannot think of a better way to share Seth with all of you:

Symphony for One

To live content with small means:

To seek elegance rather than luxury: and refinement rather than fashion; to be worthy, not respectable, and wealthy, not rich; to study hard, think quietly, talk gently, act frankly;

To listen to stars and birds;

To babes and sages, with an open heart; to bear all cheerfully, do all bravely, await occasion, hurry never.

Let the spiritual grow up through the common;

To choose to get better, never even; to trust a stranger, to keep a promise, to love.

To know G-d.

 

By Seth D. Palmer

 

 

Thank you

Alan, Sheera and I want to thank you for all the wonderful, caring messages we have received. The family has been asked if there are any special places that we could suggest for donations in Seth’s memory. We offer the following suggestions:

Rhoads 7 Patient Comfort Fund,

Hospital of the University of Pennsylvania,

3400 Spruce St

Philadelphia, PA 19104

Att: Debra Dearstyne

or

Congregation Ansche Chesed

251 West 100 St.

New York, NY 10025.

With love and strength

Mom

The Blog We did not Want to Write

This morning, Seth lost his battle with leukemia.  He died peacefully with no pain or discomfort.

The funeral will be on Monday December 24, 2007

Location:                      Plaza Community Chapel

                                      630 Amsterdam Ave (at West 91 Street)

Time:                           10 AM.

Phone:                          212 769 4400

 

We want to thank all of you for your constant, love caring and support throughout these past ten months.  You will always be in our hearts.

 

Alan, Sheera and Mom

UPDATE +86

On Thursday, Seth had a bone marrow biopsy done, in order for the doctors to see the progress that has occurred since the transplant.  Yesterday we received the results.  The news was a huge disappointment to us.  Rather devastating to be more exact.  Even with all the knowledge, skill and expertise that the medical staff has, there are times when they do not have the ability to change certain things.  We have now refocused our goals.  They are simple and clear…to keep Seth comfortable, safe and secure for his remaining time.  Alan and Sheera are here.  And so are Aunt BJ, Uncle Lenny, Aunt Maxine and Milton.  Seth is very weak and can hardly speak but seeing his closest family has brought a smile to his face.  We should all be proud of the courage Seth has shown, faced with this terrible news.

All of you have been so supportive, nurturing and caring.  You have given us the courage to fight the battle and all of us are so grateful for your constant love. We look forward to seeing your messages on the blog.

We will keep you posted

With strength and peace

Mom, Alan and Sheera

Day + 79

I can hardly believe that an entire week has past since I last got to the blog.  By the time, I got home, I was just too tired to sit down and write. It has been yet another challenging week, filled with a variety of “events” for Seth.  The new chemo protocol that he is taking has helped significantly to control some of the major GVHD problems. However, like all chemo drugs it does have serious side effects.  It makes him very tired as it suppresses some of his blood counts.  They are not at a dangerous level and are being monitored all the time.  As soon as this round of medication is completed, the numbers should bounce back. Seth has lost so much muscle strength, that the daily things we take for granted become so very difficult for him.  He knows that he has to work on this (and he is really trying) but needless to say it is so demoralizing and frustrating for him. 

I so wish that I could have a more positive posting for the blog. I am hopeful that will come soon.  Seth is determined to get through all of this and continues to fight on.

All of your comments give us support and strength.  We treasure them all.

Mom

Day + 72

It is really Sunday (73) but I have not yet gone to the hospital.  Here is the latest update on Seth.  The doctors have tried a new combination of drugs to try to get the GVHD under control.  It will take several days to see if this works.  They use the words drugs and medication but the reality is that is a form of chemo, not nearly as potent as he had before but never the less that is what it is.  Seth has taken it without any major side effects, except that he numbers have gone down a bit.  This was to be expected so we were not surprised but he has felt weaker from it.  The doctors told us it would take some time to see if this new combo of drugs works.  So we have to be patient but it is really difficult.

He is so grateful for the laptop as he can find ways to divert his thinking.  It is so hard to  find things to do when you do not have the strength to even pick up a phone to talk.  At times, we have truly amazing conversations about all sorts of things both trivial and important and other times the quiet of just having another person around  is the way to go.

I know Seth misses all of you and is looking forward to getting out of the hospital and being able to visit and see you, me too 🙂

With love and strength,

Mom

Day + 65

Here we are…at day 65 post transplant.  Still struggling to get the he…. out of the hospital.  Remember how naive we were, thinking oh yes, we will be home in 30 days.  That is the perfect world.  We are not there.  It must be on a planet in another solar system.  If I sound frustrated, I am.  And if I feel this way, try to imagine how Seth is feeling.  It amazes me, that inspite of all the setbacks, there are still things that still make him smile; a funny story, a good movie, and so it goes.

We did have Thanksgiving dinner together.  Homemade turkey and stuffing and cranberry sauce.  It was a time to realize how much we do have to be grateful for.

From a medical standpoint, they are still trying to get Seth off more of the IV medications.  This is very tricky and challenging for all. They tried one of the medications that he must take, but his system was not ready for the oral form, so back on the IV he went.  Even some of the medications that he has been on for a long time, sometimes become problematic and they need to be changed as his body does not do well with them any more.  The GVHD becomes active as soon as there is a change that the body does not accept so it is a very slow process to make this transition.

Seth asks that you continue to share your comments on the blog.  While he does not always have the energy to write, he does love to read what you say.  It is a wonderful way for him to keep connected with all.  Needless to say, it means so much to me as well.

Mom

Day + 58

This has been quite a week It started off with some of Seth’s numbers going totally out of control and gave us quite a scare, requiring some tests to find out what was going on.   The good news is that these things have seemed to have been resolved and Seth is back on track. The stubborn bacterial infection is finally gone! I have a feeling that he will soon be on the blog again. As an indication of progress, Seth has been working with PT.  It is very slow but steady.  He is off IV food and has been doing a credible job of eating.  It seems that they have improved the food service so that it now rates as edible.   As I watch Seth, I realize how much energy is expended on just the very things we take for granted.  I am encouraged by his determination and look forward to his continued progress.

Seth and I look forward to your comments.  They are such an important part of the healing process.

With love and thanks for all your continued support.

Mom

Twins :)

Ultrasound of my heart from yesterday.

Day 50

As I’ve been learning through most of this illness, whatever complication can be simply described is usually not quite as simple as it would seem. Same thing for side-effects. Come to think of it, describing these outcomes in only the most simplest of ways is common-place and probably easiest to do because the manifestations of variations on what can happen are probably so numerous – they’re certainly unpredictable – that to get specific about anyone one thing before transplant could take an entire day’s lecture in and of itself, unlike the kindly 4 hour lecture we got before this whole process started.

Good morning! I finally decided to write something for the blog.

It has been an incredibly hectic time. But I am astounded that I now have someone else’s immune system in me. Of course my own immune system and nouveau-immune systems are not loving each other and I have had complications – nothing life-threatening, but serious. This is called Graft vs Host Disease and actually it’s not a bad thing to happen as it helps to establish my new immune system and help the body adjust. I’ve been fortunate that I haven’t had the most serious of complications, but complications just the same that have made the past several weeks somewhat unpleasant.

Not important to get into the details here, but in general, my GVHD has complicated my diet, my skin, body strength and I’ve had some fevers and bacterial growth. All of which are being handled and with the exception of bacterial issue, the issues are clearing up nicely (if slowly).

Mom has been doing a stellar job keeping up the blog and with calls and such. She went back to NYC to take care of things for a day or two and I think promptly collapsed and napped for most of the day — a well deserved respite. And although I know it’s taxing on her, I have to ask that we still go through her for a lot of communication – I’m simply not strong enough to email everyone or to talk on the phone just yet.

Many thanks to everyone especially for the comments – I read them regularly and just love them so please keep them up!

Strength and love to everyone,

Seth

Day + 48

Seth has asked me to give an update. This past week was one with lots of steps forward and back and forward and back and finally forward. This has been so trying and difficult for us. It was almost as if each day had another surprise. He developed an infection in his blood but that seems to be under control of an antibiotic. The swelling in his arm is slowly going down. His numbers are doing OK and his doctors are beginning to lower the doses of some of the medications and take him off IV food. The goal is go get him off all IV. This needs to happen so that he can go home. Tonight was his last IV food. This is “good” but now he has to deal with the hospital dietary shortcomings. He has been trying real food for the past few days and today they increased his variety of choices. He has been down this road before but his body was not ready for real food. Now it seems that he is able to tolerate it much better. His diet is still quite restricted and he often talks about the things he would like as soon as he gets the OK. This list gets longer each day. Finding out that he can order off the limited menu helps somewhat. He has been out of bed and PT has helped a great deal to get him moving. He is still very tired and weak but that will improve. His mind set is in positive gear. While he is not yet up to blogging himself, he does read the blog and loves hearing from all of you and so do I.

Love and thanks for all your support.

Mom

Day + 42

Just to let you know that Seth made it out of bed, did a walk down the hall and back.  It was a huge effort but he did it.  He is now on the BRAT diet. (no nasty comments, please)  This is Bananas, Rice, Applesauce, Toast.  If his body continues to respond positively, he will progress to the next level.  I don’t know exactly how the hospital defines the next diet.

The  clot is still being watched as it has caused his arm to swell up but as of right now, the doctors are not planning to do anything more.

He keeps asking the doctors when he can get out of the hospital.  They have explained that he needs to get off all IV meds, be able to eat enough to sustain himself and be mobile enough to have a sense of independence.  This is a huge goal but attainable and Seth is working hard at it.  There are times he feels so weary but he is determined to get home just as soon as possible.

Please continue your wonderful support.  It helps so much to have you with us.

Mom

Day + 39

It feels so good to be able to write this entry with a positive feeling of encouragement.  Seth was able to get out of bed and walk down the hall today with a bit of assistance from physical therapy.  It was exhausting both physically and emotionally but his determination to get out of the hospital is the impetus that is getting him moving.

They did a follow up ultra sound regarding the swelling and clot and the preliminary remarks were good. We need to hear the doctors final report on that.

The GVHD is still a significant problem and will be so for a while.  It does appear to getting better ever so slowly.  The doctors are now talking about getting some of the Seth’s meds reduced and transitioned from IV to taking orally.  One of the other next steps is to get Seth back to eating real food. Knowing his dislike for the hospital “food” I guess that means I will be doing a bit of cooking.  No Problem 🙂

For me one of the strongest signs of his improvement was asking for his laptop and talking about the new operating system for the MAC.

When I left, he was truly tired but it was a tired of accomplishment and hard work, a good tired.

Thanks for continuing to give your love and support.

Mom

Day + 37

Sorry for not writing sooner.  This past week has been quite frustrating for Seth.  The doctors have been revising his meds and finally we think that they have come up with the correct formula to combat the GVHD that is so pervasive.  That being said, now here comes the “punch in the gut” for the week.  Wednesday night we noticed that his upper arm was quite swollen.  This does not appear to be a manifestation of GVHD so it was decided that an ultra-sound should be done to find out the cause.  Thursday we get the report that Seth has a clot in his arm.  It does not totally block the vein.  While it is a concern, the team feels that as Seth starts to get his strength back and move around, this will take care of itself on its own.  The doctors do not want to add any more medication to his system. In the mean time they are monitoring him very carefully.   This has only added to Seth’s list of things that have to get better before he can get out of the hospital.  As he said to me this evening, what ever happened to the 30 days that were the game plan for the transplant?  He knows that it will take however long it is necessary to get through this but he is determined to do it.

We are always grateful for your love and support.

Mom

Day + 31

Seth is finding the post transplant time so very difficult. Just as we think that we are moving forward, along comes yet another complication. GVHD has many manifestations and each one needs to be treated individually while still working with a suppressed immune system. The doctors are constantly evaluating Seth’s medications and adjusting them or adding to them to counteract the battle being fought in his body. Needless to say these past few days have not been easy for him. He is very tired, frustrated and angry. There are, I am sure many other adjectives he would insert here but I think this gives you the general idea. I know that I generally try to write a more upbeat posting but in all fairness to Seth and to all of you, I need to share the fact that there are just some days that really are not easy for him.

I am grateful to BJ who spent time with Seth so that I could have a bit of time off. The chance to unwind was so appreciated and yet I could still be close by with cell phone in hand.

Tomorrow is a new day and with your love and prayers it will be a better one.

Mom

Day + 26

Yesterday was a big day for Seth.  He asked me to hold off writing on the blog last night, hoping that he would have enough energy to get to write himself.  The thought and desire to blog was a huge step.  It will happen soon.

Seth is still fighting the GVHD disease which is being most stubborn but the doctors are coming up with some good options that should get this under control shortly.  The good news is that Seth got up, and walked OUT of his room today.  His physical therapist walked with us but he did it on his own steam.  We estimated that the total distance covered with about 40 feet, then he sat in a chair for a bit.  All this activity really tired him out but it was so good to see.  This is the beginning of the re-contamination process. It is a positive step and as his doctor reminded us, this goes in baby steps.  Oh yes, and the very best (from my own perspective) was that I could finally hold his hand. I had to be gloved but that was just fine.  Boy did that feel great!

Love to all, thanks for your continued support

Mom