Still hopeful!

Ok, so I know it has been a while since my last post, and I apologize. I am behind in everything, and just trying to tackle one day at a time with my crazy schedule.
So the really good news is on Lucy. She was having symptoms (eye twitching and her right foot feeling like it had a 100 lb weight in it), so they moved her MRI up. The results show that the tumor on her brain stem, and the other active tumor are stable. The spot where they removed the tumor has a little "lighting up" on the MRI, but the surgeon doesn't think that is the tumor returning. He said that she is probably just getting lazy about remembering to pick up her foot/toes, so it is getting harder. As for the eye twitching - it is her eye lids, not her eyeball that is twitching, so that just means she is tired (which makes sense, since Lucy has trouble sleeping), as well as the fact that her pupils look good. So we are clear for another 6 months when she has another MRI.
On the Mom front it was good news also. The doctors reviewed her case, and although they are still concerned and not sure it is a good risk; they are pleased that her liver is holding up so well, and some of her test scores look really good. Also, they are very pleased with the radiation treatment that seems to have worked very well, and Mom did just fine with it. They said the biggest factor was Mom's support team (Tanya and I), and how dedicated and willing we were to do anything it takes to save our Mom. So here is the scoop: They have decided to give it 3 more months. After that time, they will redo the scans - and if she is the same or better than she is now, they will put her back on the list. If she is worse, they will give us a definite no for the list at that point. This is all with the understanding that if they put her back on the list, and they get a liver for her, that when they open her up to do the transplant, if they find that the cancer has grown and/or spread, they will close her back up without the transplant, and give the liver to the backup person; and she will be unable to get a transplant at all, putting her back as terminal.
They also are referring her case to a team in Indiana. In Indiana they are not as conservative as they are here when it comes to transplants. Also there is less of a wait. They usually transplant people with a meld score of 22, and Mom has a meld score of 28, which means that she would be the absolute top of the list for a liver. That, plus the fact that she is A+, which is a very common blood type, means she would get a liver very quickly. I do have to research and see what will happen with her insurance (which usually will NOT cover surgery outside of CA, unless you are traveling and have an emergency). First though, we have to see if the team in Indiana is willing to add Mom to their list. The doctor said he will send everything over, and we should hear back something by Monday, March 19th. This will be in addition to the recheck in 3 months here. They are hoping that if Indiana takes her, and it works out, that she will have a liver and be recouping in 3 months, instead of just finding out if she is eligible here.
So sorry for my rambling and poor grammar, I haven't slept well in a while, and really couldn't sleep last night. I will blog again when I have a new update. :-)

A Ray of Hope

So, we went to SF to have an angiogram done on Mom. The purpose of the angiogram is to check and make sure that this new radiation they are doing on her (called Y90) will go directly to the tumor, and not to the lungs or elsewhere. Apparently the liver can handle this strong radiation, but the lungs and other organs cannot. So the angiogram is done to make sure that it will go directly to the tumor in the liver and not elsewhere, as well as to map out the "plan of attack", and also to determine how much radiation is needed. The good part about this is that the radiation is so centralized and specific, that it won't make her sick at all.
However, it turns out that Dr. Wack, who is on the liver transplant team as well as the doctor doing the radiation, was doing the angiogram, and said that they might have made a mistake in reading the last MRI. That although everyone was sure that the cancer had grown and was spreading into the major vein going to the liver, that it could have been actually dead cells from lack of blood flow that just presented as part of the cancer. So long story short, they are going to be doing the radiation treatment in the next 10 days or so. Then 4 weeks after that, they will do a follow up MRI. When they have that MRI as well as the films from the radiation, and can confirm that the cancer hasn't gone past a 5 or spread outside the liver, then Dr. Wack and Dr. Frederick will both present to the Liver Transplant Team to see if they will put Mom back on the transplant list. There are other things that will come into play as well, such as Mom's current health and nutrition. Her last blood tests showed malnutrition - and that worries Dr. Frederick that the team won't put her back on the list. So there are a lot of "ifs" at play here - but there is still a glimmer of hope! We are trying not to get too excited, and are currently living in limbo and won't have any news for another 2 months. But during this time, Mom will work on exercise, sleeping routines and nutrition to do her part, and we will all be praying and helping her the best we can. :-) It is all in God's hands, as we have always known. :-)

Very sad news....

Well, we went and met with Dr. Merriman today, and our fears were confirmed. Mom has been taken off the transplant list, and has been given 6-12 months to live. It will most likely be 6 months - unless they can do some radiation and chemo pills, that may make it go to the 12 months, without the usual Chemo side effects. We will be going to San Francisco to be doing a test to see if they can do the radiation they want to try, which may give her that extra six months.
The tumor which was a size 2 has grown to a size 7, and it has spread into the main vein going to her liver, which has made it go from stage 2 to a stage 4.
We appreciate all of your prayers and love you have given to us all. For those who donated cash, we will be sending it back to you, since it was sent for the transplant, and she can no longer have it; and for those who supported our fundraising efforts - we will use that cash to try to get her through the rest of her appointments and procedures over the next 6-12 months, and then if we have any left, put that towards her funeral costs which we will need to cover.
Thank you again sooo much for your love and support. We are all hanging in there. Our faith in our Lord and Savior, Jesus Christ, as well as our knowledge of the plan of salvation strengthens us during this difficult time. We know we will be together again, and our tears shed are just for knowing how much we will miss her until our time to return to our Heavenly home comes.

Your prayers needed....

Hello everyone! So sorry I didn't get to do a wonderful "Counting my Blessings" Thanksgiving post for my blog. We are so very blessed, and were fortunate enough to get permission for Mom to go to Oregon for Thanksgiving as well as Grandpa Stokes' 90th Birthday celebration. It was so wonderful to spend time with family and friends - and as always, was too short! Someday, my blog will be filled with cute and funny stories, thoughtful insights and whatever else crosses my mind that I will have time to post. But until my life slows down a little, it will continue to serve as an update on the health and status of Mom and my kidlings.
On a more somber note - Mom received a call a few minutes ago from her hepatologist, Dr. Merriman. I don't remember if I mentioned before, but Dr. Merriman is moving to his homeland, Ireland. He has a great job there waiting, as well as all of his family - and with small children, he and his wife feel it would be good to have them grow up around their family. We love him so, and were very sad at our last appointment with him. We were already transferred to one of his colleagues, and weren't going to get to see him again before he left in a few weeks. However, after the Liver Transplant Team (including Dr. Merriman) reviewed the last scan that Mom had done on her liver on the 18th, he called himself and said that he had very serious news, and that he wanted to be the one to tell us, and he wanted to tell us in person. So he will be in Sacramento on Monday, and we will most likely have an afternoon appointment with him to find out what is going on. It is very scary to think of what it might be that he wants to see us himself, and in person.
We do know that all things are in God's hands, and He has a purpose and a plan for each one of us. Please pray for us, that we may feel peace, and not fear and worry as we wait to find out what serious news he has for us. I know that we can get through anything with faith in our Lord, Jesus Christ - no matter what the news. I will update you all as soon as I return home from the appointment on Monday evening. Thank you so much for your continued love, support and prayers.

We are home again!

Hello all! So we got home from San Francisco late last night. The doctors think that the cause of the bleeding was a swollen vein in her colon that burst, (similar to the ones in her esophagus that had to be banded). They won't be banding these, as the bleeding only lasted for less than a day. If it bled longer, they would have to do something. We were able to talk to the head of the transplant team, and he gave us some valuable information as to what to watch for at this point with Mom. As usual, the entire team at CPMC were wonderful, compassionate and amazing!!
We also had that kind of care from Mercy Folsom. We were amazed at how fast they processed Mom through the ER. Also, they were able to do another paracentesis, and drain 4 liters out of her abdomen, helping relieve some of the pain from the weight and pressure of the ascites. They have added two new meds, to help with that - so we will see how that works. Their new wing, which Mom was in, has private rooms, with a fold out couch and sleeping chair, so your family can sleep with you if they want. Very family friendly.
As of Mom's last doctor appointment (the day before the ER and hospital stays), the doctor recommended that it was time that Mom move in with someone, so we can watch her more closely for her times of confusion (encephalopathy) or in case of liver failure. So Mom will be doing the round-robin with Tanya, Cheri and I, in two week time slots. I will try to be good about posting Mom's location, for anyone who wants to get ahold of her (as before). We agreed to let Mom have until Tuesday, to get some things done around her house. She has to call in with Tanya or me every 4 hours or less, so we are sure she is OK. :-)
Until next time.....have a great weekend!!

Back in the hospital with Mom

Yesterday at 3:30 Mom was at my house, and started bleeding rectally with clots. (Sorry for the gruesome details, up didn't know how else to say it, than to just say it!). I took her to the ER and she was admitted and given a room. They wanted to transfer her to San Francisco last night, but they didn't have any available beds. Today they are doing a peresentesis to release some of the fluid in her abdomen, and they are still trying to transfer us to SF. They think the bleeding has stopped, but arent sure. I will keep you updated. No news is good news.

Also, on the Lucy front, her tumor on her brainstem is growing. We have to keep a watch to make sure she doesn't start having symptoms. If she doesn't, then we get to wait another 6 months to do another MRI. I still have to meet with. The neurologist on Monday to get his opinion and reading of the MRI we just had done.

Good news is, Emmie was chosen out of several kids for the talent show at her school. She will be singing "Rockin' Robin" and she is very excited.

Family Picture Added below

OK - so I added a more recent (Feb. 2011) family picture below. I hope you enjoy! :-)