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 :)

Heart
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