A Little Bit of Happy

Several days ago Robbi's Transplant Coordinator called her and told her they had done 2 transplants recently and she has moved up the list a little more :) Also they need an updated MRI for her as she is getting closer to being called for her transplant. We are doing that On July 7th at Hopkins. Getting closer! July 29 is my 9 year anniversary of my liver transplant, wouldn't it be cool if Robbi got hers July 29th also?

Also, I want to thank my friend Sandra for being such a faithful follower of Robbis blog and for all of the encouraging messages she sends. Sandra doesn't know Robbi except through me, and I know Sandra through one of my message boards, Thanks, Sandra, for being such a good and faithful internet friend. As usual, you ROCK!

Robbi's Mom

Update 6-25-2010

Almost hate to write this, because I don't want to "jinx" Robbi's good fortune the past 30 days since her last hospitalization the end of May, but she has been hanging in there and has had no problems with that wicked gall bladder...we had kind of fallen into an approx. every 30 day pattern of the gall bladder attacks, maybe we have fallen out of that pattern for now?? Sure hope so. Robbi's in-laws are arriving today for a 2 week visit. Her sister and I pitched in and helped her get her house ready for company. Even with the 90+ degree days we have been having, Robbi's energy level appears to have improved. Summer is always Robbi's "best" time of year, anyway. She loves the outdoors, loves going tent camping, loves being in the sun.
Next doctors appointment with her transplant team is July 7th. Her MELD remains at 21. (She seems to be stuck at 21!) Thank you for your prayers and good wishes, please don't stop praying for Robbi!

(FYI- Gregg Allman of the Allman Brother's Band had a successful liver transplant, due to Hepatitis C, recently and is doing great.) http://www.google.com/#hl=en&source=hp&q=gregg+allman+band&aq=1&aqi=g10&aql=&oq=Gregg+Allman&gs_rfai=CRMle7pYkTOX0GIuugATN08X2CgAAAKoEBU_QkIOz&fp=71611131acff80b7

Robbi's Mom

June 9, 2010 doctors appointment

June 9 Robbi and I went to see her regular transplant GI doc at Hopkins, who has been on vacation. We were anxious to get the "real" story for this cancerous nodules we were told she had when she was in the hospital a few weeks ago, something her GI doc had not mentioned to us and had us freaked out when we were informed she had liver cancer by an attending doctor at Hopkins last hospitalization.
Her GI transplant doctor told us the 9th that she does have a nodule 1.5 cm that's liver cancer, but "not to worry" (yeah, right) because they really aren't concerned about these types of nodules until they reach 5 cm. In 3 months time, from her last MRI 3 months ago till the one she had a few weeks ago, the size of the largest nodule has not changed. He said this nodule won't even get her any extra MELD points, she remains at 21. :( He told us she remains very close to the top of the list although that spot is 'dynamic' and one day she can be next to be transplanted and the next day she can have 5 people ahead of her, people whose conditions have worsened and are worse off than Robbi. At any rate, he gave her an appointment for July 7 and said he will see her then, if she hasn't already been transplanted by that time. Its very much a roller coaster type ride, for sure. Robbi remains in good spirits and looks good. Her awesome tan hides the jaundice she has, you have to look at the whites of her eyes to see how really jaundices she is.
Please remember Robbi in your thoughts and prayers, and thank You.

Robbis Mom

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