New developements 7-9-2010 (Friday)

Tuesday night Robbi had to go to her local hospital ER for pain from her gall bladder again. They doped her up with pain meds and she was home Wednesday morning, to go to her scheduled drs appt with her Hopkins dr and also to Hopkins for an MRI that had been previously scheduled. She looked so sick, so she had the MRI at Hopkins, (in fact, when we got there they "expedited" her to get it right away, even tho we were late for the appointment due to traffic, etc. getting there.) Then we drove to the drs office, which is not at Hopkins but another location. The dr visit there was very emotional, the dr said her cancer has not grown, its still 1.5 cm so she still gets no extra MELD point for the cancer. I think this is so ridiculous. Robbi said, how sick is it to have cancer and be hoping it grows so you get an extra point? And shes right. Its a bad mental trip shes going through and very painful to
even look at her, for me as her mother, as it breaks my heart to see her so sick and so depressed, so hopeless. She cried at the drs appointment and he tried to console her but ended up giving her his cell phone number and said next time you have bad pain and feel like going to your local hospital, call me instead day or night and I will arrange to have you admitted to Hopkins.
So we get back home, Robbi goes on back to her house, and later on (last night,Thursday)got liver pain (not gall bladder this time) last night that was the worst pain she has ever had, she had Mike call the dr. on his cell phone at 1am, dr told him to have her go to her local hospital for immediate pain control and also so they could arrange for her to be transported to Hopkins to be admitted via ambulance. She got to Hopkins this morning around 10am or so, got a room, and they changed her pain meds to morphine. She has already been taken down to ultrasound and just got back to her room a little while ago.
The doc said to her, after he gave her his cell number, at the appointment Wednesday, something that kind of shocked me. He said to her she will be transplanted this month. I was so shocked, I said "July?" He said yes, there's 3 weeks left in the month. I thought that's a pretty bold statement to make, how does he know if a liver suitable for Robbi is coming available in the next 3 weeks? What if it doesn't happen, if it doesn't happen after he has said this to her she will never trust anything he says to her again. I hope he wasn't just "bullshitting" to make her feel better, as he told her this after she had broken down in tears and said she was feeling so hopeless and depressed. These are normal feeling when you have been waiting 16 months on a transplant list, and you have chronic problems,pain, feel like crap, and are having more and more frequent hospitalizations. Even someone who "has been there" telling you that these feelings are normal, really doesn't help that much. The important thing is to keep her spirits up and let her know not to give up hope, this is part of the process, and it too will pass.
My fervent wish is that they decide to keep her in the hospital until a liver becomes available for her. That's what they did to me, but I was way sicker. I don't want my Robbi to get nearly as sick as I was before she is transplanted because frankly it was a miracle I made it at all. I pray the system works like its supposed to and a liver becomes available for her before she gets any sicker. Mike got his sister in Pa. to take the girls for however long is necessary, and Raven has Jessie the dog. Mikes on is way to Hopkins to stay with her for as long as he needs to. If it gets very bad/ serious/ critical or if it looks like a transplant is going to be happening, I will be down there too.
We are all praying that "this is it". All we have is hope, nobody has said to us, "this could be it".
PLEASE remember Robbi in your thoughts and prayers. Thank you to all her wonderful girlfriends who check on her and encourage her and keep her spirits up. You know who you are!!!
I will update this blog with any new information, I promise.

Robbi's Mom

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