Tuesday, March 20, 2012

Indiana said no :-(

So we got a call from Dr. Frederick today with bad news. The team in Indiana reviewed Mom's case, and they are not willing to take her. This is sad, because they are one of the most liberal at taking higher risk patients - so if they said no, it isn't good for other centers either. So at this point, we have to wait another 2 months, and then Mom will have a CT scan. If it looks the same or better, they will put her back on the list in San Francisco, but if not, then they will just let us know how long (at their best guess), that we can expect her to live.
They are not going to continue the radiation treatments, even though Mom did extremely well with them. This is because they are not sure if what they are thinking could be the cancer spreading is actually inflamed cells from the treatments. So, if that is the case, then by avoiding radiation the inflamed cells will calm down, and it will show on the CT scan, thereby putting her back on the list.
When the time for the CT scan comes closer, she will be having a priesthood blessing, and we will be asking those who are able and willing to fast and pray for her. We will keep you updated - but for now, it will most likely be no news for a few months.
Thanks again for all your love and support, prayers and well wishes! We love you all and appreciate you so!

Thursday, March 8, 2012

Happy Birthday Nathan!

Nathan is 5 today! He has opted out of his birthday party, and instead wants to fly in a plane for his birthday. So we are scheduling a flight for him. The pilot was unable to do it today - so it will most likely be next week. Nathan is still obsessed with all things boy! Cars, planes, trains, building, destroying, etc. He is the typical annoying little brother to his older sisters, getting into their things, harassing them; and an amazing, protective and loving big brother to Esther. She just lights up when he comes home from school. He plays with her, shares with her, talks with her, and sneaks with her! He does have a mind of his own that is always ticking, scheming, thinking, planning and contemplating! He is very loving, funny and intelligent! We are so grateful to have him in our family! We love you Nathan, Happy Birthday!!

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. :-)