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

Day + 22

We got the results from the procedure that was done on Thursday. The good news is that the infections that Seth is fighting are part of the process of the new cells taking hold in his body.  Nothing that was not anticipated.  They are changing some of the meds to address this and hopefully he should begin seeing some improvement in the next few days.  While Seth is still very tired, he is really starting to feel very frustrated and depressed by being cooped up in this one room for so many days.  He knows that this is the deal but it is really difficult.  He just has no energy or patience to do things.  Once these infections are brought under control hopefully these things will also improve.  There are times when I too, feel so frustrated as there is nothing that I can do to help make things better.  While he is not on the blog regularly, he does ask about it almost daily.  I let him know about all the comments and that really means so much to him.   Thanks for keeping us in your hearts and thoughts.

Mom

Day +21

The doctors are still trying to figure out the best way to stop some of the infections that Seth is dealing with.  Today they did a procedure to help get some more answers. It was quite exhausting.  Hopefully this should provide the information needed.  Seth had just one comment regarding all of this, “They really brutalize a body to get through this.”

Please keep the good thoughts coming.

Mom

Day +20

In some ways it is difficult to realize that already 20 days have past since the transplant and yet each individual day seems to be so  long.  Seth’s numbers are continuing to recover and some of the infections are getting better but he is still  fighting others.   The one thing that we just could not possibly imagine was the absolute exhaustion that Seth is feeling now.  It is to be expected as the new cells begin to take hold.  His body requires huge amounts of sleep.  Now I know what “sleeping in” really means.  When he is awake he is truly Seth, asking all the right questions, giving directions and showing his sense of humor and then he calmly states, OK for now, I am ready for a nap…….

He does get to read the blog and really appreciates all your  comments even though he is not quite ready to answer them directly.  Hopefully he will soon take back the reins to blog.

With all our appreciation for your love and support

Mom

Day +15

Just an update for you.  Some of Seth’s numbers are just beginning to recover.  This is a huge step but one of many, many more to go.  He is still fighting some very stubborn infections.  The antibiotics need more time to work since Seth’s immune system is being suppressed. This is necessary so that the new healthy cells will take hold. So you can see that this becomes very a very frustrating situation.

On another note, Seth has developed a taste for lemon ices.  (Probably because the hospital food service cannot really mess that up.)

We also want to thank all of you who have supported us and walked with us for the “LIGHT THE NIGHT” walks in Philadelphia and in New York.  It means so much to us to have you with us.

With gratitude and appreciation

MOM