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Thanks, Marianne...we've been holding out for the stem cell transplant, but can't use his. He has a non-related match, but making the decision has been the difficult part. As long as he was fine, we didn't want to make him sick, but it's riskier when they are sick...and now he's sick. Hopefully, after his bones start to build back up, his fractures heal, his high blood pressure goes back to normal, and he loses all this weight, he will be okay with just the one steroid.
All we can do is hope...
Oh my gosh Joan! First let me say I want to send you big hugs on this the anniversary of your precious Lena's passing. Such a special little girl and the light in your soul.
Josh. :( Oh I just bawled. It is just heart breaking to think of him going through everything he has. I can't imagine how hard it is to see the changes those dang steroids have caused. Hoping that he'll regain his strength once off this liquid steroid. No kid Should ever have to think about whether they want to be cremated or buried and worry that they will be forgotten.
Now throw the job situation into the mix and dang it, that's just too much. Any work from home option instead of the commute to the city?
Thanks, Sharlene. I'm non-exempt so not allowed to work remotely. Why they can't make me exempt, I don't know. I'm not even sure I want to work with them anymore. I love being an ETS employee, but the ISA Division is not the one I began with. Unless they offer me something great, I am going to start looking for something else.
We so hoped the new steroid would be better than the liquid, but now I'm afraid we made a mistake. He was so sick though last year, just wasting away, and we grabbed this chance. Maybe we just have to wait it out.
I wish Lee was here. She was always such a comfort to me. Sibbie is fun, but doesn't get me yet :). Gabe tries, but it upsets him too much when I am not myself, and Cooper is just oblivious!
I think one thing at a time I could handle better, but all of this is making me nuts.
Oh Joan, I just can not imagine how worried you all must be about Josh and I am so sorry that this is happening to your most precious grandson. Continued hope and prayers being sent your way.
Hugs, Lori
Thanks, Lori~
Joan, I apologize for not sending you a message on Lee's anniversary. You were on my mind and have been since. Sending you so many hugs and loving thoughts.
I am SO sorry to hear about Josh. The poor kid! I knew he was wise beyond his years from other posts you've shared, but my goodness that boy is incredible. I'm glad he's able to share his thoughts with you, as tough as they must be for both of you. I pray you feel our love surrounding you, and can glean as much strength as you need to be there for him.
You certainly don't need additional crap from work on top of it! I hope you can find an answer to that dilemma as well.
More hugs your way...
Shana
Oh, Shana...you're so sweet.
I've got my resume out there, so we'll see. At least I've taken that step. I expect I will not be let go, I'm too close to 62 and I think they will just make me go into the city until I give in and quit. I wish they would lay me off so I could get unemployment and breath for a while.
Josh is beginning to lose weight, my daughter noticed that she had to adjust the brace, so maybe the turn-around is starting to happen. If everything goes the way the doctors expect it to, his bones will begin to strengthen, he won't be hungry all the time, and all the puffiness will go away. Fingers crossed!
Two years without Lena...such a long time, and so much has changed. She would be 17 on March 19. I can't imagine her that old. She was so tiny that she always seemed like a puppy. When I look at her pictures now, I can't believe how short her little legs were. Sibbie has horsey legs, Lee's were half her size...no wonder she wanted to be carried all the time.
Hugs to you too, Shana~
That is so good that Josh is showing some improvement. I hope to hear that each day is a little bit better.
I know what you mean about Lena, and not being able to imagine her old. I feel the same about Molly.
Hello my little angel child. Yesterday you would have been 17...how I wish you were here for your birthday. I couldn't write yesterday because I am sharing the new office with Savitre, and even though she used to hear me crying in my old office, I didn't want to be crying in front of her and all the other girls. I knew I couldn't get through this without crying. I miss you so much, Lee. Your birthday picture popped up on Facebook yesterday and I just stared at you, the baby I love more than any other.
Me and Dad were looking at the Williamsburg pictures again. We had such a good trip and you were so good, always so good. Pictures of you running to greet your babysitter, running in the field in back of the Robert Carter House, in the carriage with me and dad, sitting at the table having breakfast with your own setup, so many pictures, so many happy memories. Those are what I try to hang on to, the ones that make me smile. I know you had an excellent life, we spoiled you rotten, but you just accepted, never demanded. You were the best little girl, Lena...and we loved you always. I love will love you forever, Lee.
Mommy loves you now and forever, my precious, little Lena.
Happy Birthday, Lena!
and big ole hugs for mom!