Day +11
Puzzle of the Day
What is this?
Answer at the bottom of the page!
Hello everybody! Jesse woke in a VERY bad mood today. In a way I was quite relieved as I always think grumpiness is a sign of getting better. I think he was STARVING! The doctors had decided to stop the feeds through his PEG so he hadn't had any nutrition for 24 hours. He was desperate for some Turkish Delight so I popped out to Waitrose (luckily its just round the corner) and got a box along with some other goodies like pretzels, iced gems and mini pringles. When I got back he launched into a slow but deliberate eating frenzy. Actually that's quite an exaggeration, he nearly ate one Turkish Delight as well as 6 pretzel sticks, half a packet of mini pringles and 4 iced gems. Considering nothing solid has passed his lips for 7 days it did feel a feeding frenzy at the time!
We had it confirmed today when Persis came round that it is GVHD. Jesse's temperature remained stable, since the steroids and his rash diminished. He had a bit of an appetite and kept all his food down. Jesse said today that he didn't mind having a BMT at all, but he did mind having baths! His counts were up again too, both his neutrophils (o.38) and lymphocytes (0.07). When the neutrophils reach 0.5 on two consecutive week days or 1.00 on one week day then Jesse will come off Green Precautions and go onto Yellow. This means he can leave his room, go to the playroom or anywhere else except where there are a lot of people (even outside) and he can have sibling and grandparent visitors! I can't wait for the counts tomorrow.
Tomorrow they will take blood tomorrow to test for engraftment. Persis said today that he expects that it will be 100%! If it is, it will mean all Jesse's blood will be made by his new marrow and will therefore be all his donors blood! The test can take up to four weeks but may only be a week or two. It is very early for this to be happening but he did get a very large dose of cells! Jesse will have have to stay on steroids for at least two weeks to make sure that they get rid of the GVHD. If it takes hold then it can be really, really nasty. But this does mean that Jesse will probably get the big cheeks associated with steroids and a big appetite...if its not one thing then its another hey? Also it makes his heart rate go very low so I was woken all night by the alarm going off. It looks like I'll have two weeks of this, it is really worrying at the time and very disturbing, I'm not sure what they can do about this.
Thank you for identifying yourself Sam, lovely to hear from you and thanks for the jokes! I'll show your comment to Jesse tomorrow. Sorry to hear about the split between Skippy and Snoopy. I'll get Jesse to adjudicate and let you know what he thinks. And now here is a clue to the Puzzle...
Have you guessed yet?
Yes, its Jesse's hair in a pot!
His hair was so annoying this morning getting all over his pillow, on his shirt, in his eyes, mouth and even on the Turkish Delight that we both had a serious go at it. It came out really easily, leaving a fine bum fluff all over. And the cradle cap wasn't too bad. I got almost all of it off in the bath a bit later. Jesse is very cool about it, he says he doesn't care. Here he is talking to Stan on the phone!
More soon, love to you all,
Claudia
x
posted by Jesse Richards @ 21:21
8 Comments
8 Comments:
Jesse Richards! I heard about that trick you played on Derek, so naughty!! You're doing so well Jess, keep it up you cheeky monkey xx xxxxxxxxxx
This is to test the fab new easy way to put links in comments.
Look at this cool dog Jesse
Hello Jesse!
Glad to hear you and your new bone marrow are getting along so well.
Just thought I'd tell you about Woody's recent trip to the dog groomer. He has to go about 3 or 4 times a year as his coat is naturally rather like a long doormat and gets very tangly and uncomfortable if you leave it for too long. Anyway, this time, when they gave him the normal haircut, they used a different shampoo on him afterwards, and he turned out to be allergic to it!
As he's a redhead, his skin is quite pale and suddenly it was all bright red under his fur! Poor thing, he didn't know what to do with himself as it was really itchy and he couldn't reach all the places he needed to scratch at the same time.Sometimes he looked like he was doing some sort of weird dance. Poor Woody! We had to put cold water on his skin to cool it down (which he didn't like much either.)
Anyway, he very wisely decided to sleep most of the next day...and when he woke up it was starting to get much better. He says Kippa's lucky to have a coat that doesn't seem to get tangly. (Also he's quite jealous about his secret night time jaunts abroad.)
He sends you a big whiskery kiss and wants to meet you when you come home.
Keep it up!
Love,
Charlie+Tom+Woody+Wilbur xxxx
No wedding for Skipper... sighs, there was me hoping to be Matron of Honour - I never did get to be a bridesmaid.
Like the pic of the cool dog Dad posted - looks like a pilot... he could have flown them on a honeymoon to somewhere exotic.
I think you look real cool in yer latest pics - cd be starting a new fashion hair wise - mind you the shops that sell shampoos wdn't like it cos people wd stop buying it if they didn't have any hair to wash.
Q: Why did the monster cross the road?
A: To eat the chicken!
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gaby and co
Glad you're doing so great Jesse! Lots of love and hugs to you all from Roger and the girls. Thank you, Claudia, for all the info....
Love the new look - you'll save a fortune on shampoo over the years....
We're all thinking of you,
Jackie, Bill & Al
Hi Jesse, Glad to hear you are feeling a little better, you are doing so well. Love to you all. Lots of love Helen xxxx
Dear Jesse,
I'm writing from Children's Hospital of Philadelphia in the USA! We are here for my daughter Laura's BMT. I have a "google alert" on my email account so I automatically get all kinds of news about BMTs from the news and blogs like yours. Your page is really cool. When Laura wakes up I'm going to show her all of your puppy pictures. At home in Texas she has two beagles, Gracie and Buffy--they were very good about getting baths every other day during her chemo last fall! Keep up the good work and make sure to laugh alot every day. Laura's doctors say it helps to keep your lungs clear and your heart strong!!
Ingrid
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