How's the food there, Rob? Instead of going off to the cafeteria, I sometimes bought meals from the hospital food service that brought Ruth her meals. Actually, they merely offered to bring Ruth meals; she had no appetite until Day +24. After a while I learned what I liked and didn't like on their food service menu and what to order as the menu changed for different days of the week. But Ruth always liked the same thing best: popsicles!

That's hilarious about the popsickles! Room service got tired of bringing them up to the 6th floor here, so they stored something like 20 big sticks, italian ices,you name it. They have a pretty extensive menu now that pretty much covers everything,and yes, you learn what to order. On one of my first days here the nurse on duty said to stay away from the steak items and boy was she right! For the most part I must say they do a pretty good job, and the daily chef special is always good.

I just got word this morning that I am no longer on "low residue" diet and I can have pasta again! :p

How is Vera?
 

I have not seen a post from Vera recently. Has she been able to get the location for her transplant changed? Is she in the hospital yet? Can anyone update me. Thanks so much
PH Steele.

Home at last...
 

Well sort of, I am out of the hospital after 56 days! It was decided I was good to go to my sister's house which is close enough to the hospital to satisfy my doctors, and I am thrilled to be here. You cant believe how nice it is to be free of all the IV's, etc. I can actually sleep at night without being awakened every 2 hours. I was released last Friday and my first follow-up was today (Monday.) Everything looking good except liver enzymes and glucose, so dr. added two new meds, bringing my total to about 30 pills a day, it's pretty staggering keeping track of them all. Some you take with food, others on empty stomach, and some interact with others and have to be taken separately... so I am pretty much popping pills all day long, at least for a while and they will gradually taper off. Still feeling great hoping my taste buds will kick in soon so I can start tasting my food again, should be anytime now, I hope so - need to gain back some of the 25 lbs I lost, I am way too thin. My numbers are on the rise again after dacluzimab treatment stopped & I am happy about that.

Vera is doing fine, I will tell her she needs to post an update!

Cheers, Rob

Great news, Rob. How nice to get to enjoy some peace and quiet after 8 weeks of commotion! Even with the best of care, a hospital can never be as restful a place as home (even if it's your sister's home).

Getting your taste sensation back will definitely be a welcome improvement, so eating can become a pleasure instead of a chore. Taste is a sense we tend to take for granted until we're missing it.

You've certainly topped Ruth's records for pills per day. I can swallow pills one at a time with a sip of water, but Ruth learned to do 'em by the handful after picking out the right collection for each time of day. We learned what each pill was for so we could discuss with her doctor when Ruth would no longer need particular pills. It was a relief when we finally had to give our name at the pharmacy, instead of being there so often for refills that all of the employees knew us by sight! :)

Day +57
 

Things are going well here after almost two weeks out of hospital. Still seeing doctors twice a week and progressing slowly but definitely improving. I feel fantastic and want to get out and do things but know that's impossible at the moment so I have to constrain myself! GVH is still a concern, seems like every time I see marked improvement, something new pops up, very frustrating. Anyway, I am not even a couple of months out yet & have to realize that I won't be "normal" for quite some time...

The grafting and my numbers are great, would be better if I didn't have to take all the steroids which drive blood counts down and weight is still dropping even though I am eating really well, (down to 156 lbs.) Also will be referred to eye specialist in a couple of weeks if improvement is not seen there. My eyes are very dry and blurry.

My #'s are:

WBC 6.4
RBC 3.27
HGB 11.6
PLT 91

Take care everyone!

Day +90
 

I have received word from my doctors that I am doing so well that I no longer need someone with me at all times and I can go home whenever I wish! Saturday will be the big day. I only have to visit COH once a week now for blood draws and monitering. My drug load has been cut by about half and every time I meet with my doctor he is amazed at how quickly the GVH disappeared. I literally have no symptoms. Gut is perfect, no rash, glucose levels perfect and eyes back to normal. I am able to drive again & shop just like a normal person! Been to the movies and lots of long drives, it is wonderful. My taste buds are on the mend and food tastes better and better. I will find out Thursday if I can start eating raw veggies or if I need to wait till the 4th (100 days) I have a feeling they will say its fine, I am really craving a good salad!

My main focus once I get home will be regaining my strength and getting into shape again with my goal of being back to work by October. I am so glad I made the decision to do the transplant & get on with life without MDS. Toughest thing I've ever been through but worth it.

My thoughts and prayers are with our friends that are undergoing or are about to go in for transplant - keep plugging!:)

Three cheers for you, Rob! Hip hip hurray! Hip hip hurray! Hip hip hurray!

It's so great to hear that you're going home and that you seem to be in such good shape. I know exactly what you mean about that salad. I sat with my fork pointed at a bowl of lettuce on my 100th day and could wait to chow down.
Enjoy! You deserve it.

Regards,
Ruth

rob.... i have been rooting for you since day one. was worried when you didn't post. my prayers are with you and i am thrilled at how well you feel. please keep us updated. you are an inspiration........

Rob Is In Critical Condition
 

Once again I am writing on Robs behalf he has become a very dear friend to me. I wanted you all to know that they have put Rob in an induced coma and he has a fungal pneumonia, gvhd and severe diarrhea. His sister is asking that you continue your prayers for his healing.

oh no! Thanks for the update, Vera. I'll keep him in my thoughts.

this is such terrible news.

i pray that this will turn around and once again he will be restored to good health. he has been through so much and has done is all so graciously. he deserves the outcome we have all hoped for.

if every there was an example to follow during the uncertainty of this illness, he is it. his positive spin on every situation has given strength to so many of us.

my prayers are with him and his family. i can only imagine how difficult this is for all of them.

Rob's Condition
 

I am not able to get on Rob's blog tonight. I am very anxious to hear how he is doing. I hate this setback for him, and I have him very much on my mind and in my prayers. Does anyone have a new report?

Rob
 

Thank you for the update Vera - I lit a candle for Rob in the hospital church today.
Kind regards
Birgitta-A

This from the Weloveourboyrob blog . . .
 

Thursday, June 25, 2009
A Good Report Today

Dr. Kim came into Rob's room this morning and said to Nonnie, "I need to talk to you." Nonnie requested that the conversation be held outside of Rob's room, as the nurses have told us that he can hear through his induced state of sleeping. Dr. Kim's reply was, "Even if it's good news?" She proceeded to tell mom that Rob is responding well to the treatment. They are going to test his other lung to see if there is fungus in it today. His artificially pumped oxygen has been reduced because he doesn't need it! They are considering gradually weaning him of the respirator and bringing him back to consciousness. Keep praying! Thank you for all the encouragement and love!!

Praise the Lord!
 

I am so happy for this good report. I have been praying steadfastly for Rob's healing and for his family to have encouragement. Even though I do not really know Rob, I feel that I do from following the posts and blog. I can sense a man of strong spirit and strong faith. God has plans and a future for Rob!

Any Word this weekend?
 

I still cannot get on Rob's blog--computer problems! Has anyone read an update this weekend? I am so anxious to hear that Rob is continuing to improve.

PH Steele

Rob
 

Rob is in an induced coma still. He is receiving wide spectrum antibiotics but it seems to be spreading. Please pray for him.

Any Word on the 29th?
 

Still having problems getting on the blog. What is today's update on Rob? I woke in the middle of the night last night and said a prayer for him.

Rob
 

Everything is still the same.

Thanks, Vera
 

Vera, thank you for this update. I pray that you are hanging in there and not feeling too badly. Prayers are with you, friend.

Pray for Rob
 

Rob is in dire shape, they have him on dialysis and it is helping but Robs sister Laura commented that they are surprised that he is still alive. Please bombard the heavens with your prayers and supplications. Rob was such a comfort to me. He wanted to beat this thing as do I. He wanted to be there for me. We have made pacts to meet and do something fantastic after we get well.

I am praying and for you, too, Vera
 

Vera, I am praying steadfastly for Rob and for you today as you get your transplant this evening. I hope that all goes very well for you. I feel that I know you and Rob.

rob
 

vera..

thank you for the update. both you and rob are in my thoughts and prayers constantly. i am heartbroken to hear his present condition and i am fearful of the effect it is having on you. as we all know, everyone reacts differently to treatment. my prayers are that a miracle does happen and he recovers and that your new cells bring you the cure you deserve. we are all with you.


love and prayers......

From Rob's blog...
 

Rob went to be with our Lord at 2:30 today. His family was around him, praying with him, and loving him while he entered Heaven. It was very peaceful, and though we are heartstricken, our comfort is in knowing that Rob is pain-free and full of joy.

"Precious in the sight of the Lord is the death of His godly ones." Psalm 116:15

Jesus said to her, "I am the resurrection and the life; he who believes in Me shall live even if he dies." John 11:25