Happy Memorial Day Weekend

Robbi and her sister planned and executed an awesome party Saturday for their two youngest children, who turned 2 and 3 just 2 weeks apart. They did an awesome job, had a magician who also did balloon animals and hats, and they had 5 games plus hot dogs, popcorn, slushies, and prizes. It was a GREAT party, they both did such a great job. Robbi made it through the day ok, heres a pic of her. Hope everyone has a wonderful holiday weekend.

ROBBI AND HER GIRLS

 

Good News, for a change 5-26-10

OK, heres a bit of potentially good news. Yesterday afternoon after we were home from hospital we got a call from a doc who works with Robbis GI doc, who is on vacation. She said she had called Robbis doc, on vacation, and discussed with him the fact that were told Robbi has multiple nodules cancer) and one 1.5 nodule, etc. HE SAID that the MRI done 3 months ago made him suspicious so he ran another test (can't remember what it was called) and he felt at that time it is NOT cancer. The fact that her MRI from 2 days ago is unchanged from the one 3 mos ago is good. Her liver is cirrhotic anyway and is bumpy and not smooth so maybe the nodules were those bumpy parts, who knows. Anyway this doc said she was calling us because she knew when we left the hospital yesterday we were upset (to say the least) and she wanted to put out minds at ease. She said when Robbis doc gets back from vacation June 7 he will review the new MRI and if he gets a different impression he will let us know. We have an appt w/ him June 9th anyway. SO THIS IS (potentially) GREAT NEWS! NO CANCER, just cirrhosis and a bad gall bladder. I would just like to smack that doc who came and in dropped the cancer bomb on poor Robbi in the most uncompassionate way I have ever witnessed anyone deliver bad news. She evidently wasn't in class when they went over "Compassion and Sensitivity 101."
Thank you for your prayers and good thoughts, which are evidently WORKING so please don't stop!
Robbis Mom

Back to Hopkins 5-23-10

Sunday morning Robbi had another attack from gall bladder and ended up going to the ER here, they sent her via ambulance to Hopkins and admitted her to get her pain under control and do the MRI they were waiting for authorization to do at Hopkins later this week anyway. They found out she does have gallstones and her gall bladder needs to come out but its too risky to do surgery right now, as she has very bad clotting factors and their plan is to take the gall bladder out when they do the liver transplant. We also found out she has several/many cancerous lesions less than 1 cm and one that is 1.5 cm, nothing they can/will do about it because all they can do is transplant her, which is the goal we are working towards anyway. We are freaked out about the liver cancer but them, not so much, it seems. They see it all day long, but we don't, and its been really upsetting for us and we really are not sure what each day will bring. They said she will have to keep going through these gall bladder attcks over and over till its her turn for a liver. Apparently they did an MRI 3 months ago and knew then that she had cancerous lesions but didn't INFORM ANY OF US, now they tell us that the new MRI from last night compared to the one 3 months ago shows no growth of the lesions (which they alternately call lesions and/or nodules) which is "good news".
Her MELD is now 22. Seems you get one whole point extra for cancer. I am being sarcastic, but yes, it really is just one point for cancer. Shocking, no?
Robbi is back home now, Tuesday 5-25-10. Tired but glad to be home with her girls and Mike. She was in the hospital for Mikes birthday Monday and tomorrow is Molly's 3rd birthday. Thank You for all of your prayers and good thoughts for Robbi.

Robbi's Mom

Almost A Liver

Tonight we got the call from Hopkins for Robbi to be "on standby" for a liver, told her not to eat or drink for 2 hours....said if the person on the list ahead of her was unable to take the liver (???) it would go to her. They told Mike it was a "2 hour standby". So we of course all freaked out, and about 1/2 hr ago they called them back and told them the liver turned out to be unsuitable for transplant, so we are back to waiting.
But the good news is that we now know there is one person ahead of Robbi and once she gets transplanted the next liver that's A+ will be Robbis. This happened to a friend of mine and she got her "for real" call several days later, and that was the liver she ended up getting So this means we are SO CLOSE. I guess you could call this a dry run but boy it had my heart leaping out of my chest with every emotion you could possibly imagine when you are waiting for an organ transplant to happen for your child. Also, a reminder to us all that we could getb the call at a moments notice, we have been on "red alert" since Thanksgiving and we had kind of gotten lax with the anticipation of EVER getting the call.
Please keep up the prayers and good thoughts for Robbi to get her call. We are so close now to her New Beginning. Thank You friends and family for all your support.
Hoping my next entry will be news of Robbi being in surgery!!!! :)

Robbi's Mom

Robbi back home 4-29-2010

Robbi was discharged Thursday, they did tap her and I swear she looks 30 lbs lighter. She was carrying 50 lbs of fluid alone on her when she went in. Her knees weren't even visible. The tap was no fun but Mike got it on videotape (ewww grose) and will be putting that up on the blog when he gets a chance. Not for the weak stomached peeps out there, for sure. I'm not watching it cos I couldn't stand to see that done to my child. Anyway shes feeling better and they increased a couple of her meds.
I was hoping a liver would come in while she was there (as we all always do when shes in there, anyway). Thanks for your prayers and good thoughts, sorry the picture of Jessie the dog that Madi drew came out sideways, I am techno-stupid.

Robbis Mom