And the wait goes on...

Hi friends and family, its me again. Well the reason I didn't post anything lately is because there really hasn't been a darn thing to say. In April our scans came back good, still no tumors outside the liver. So we were supposed to get a bump in our points to a 29 (MELD Score) but we waited and waited and no word back from UCLA. After chasing them down at the beginning of June we got vague answers about how the board changed people, and we were denied. (denied more points or denied off the list!? They weren't clear and in some ways we wanna run from more bad news so we didn't press the point). Lots of confusion, no answers except a "don't worry it will all get worked out" (this was said by our UCLA transplant coordinator) so we left our hope in her words. And UCLA is re-submitting Mark's case, etc. Another point to my rambling story... you are supposed to be your own advocate, or maybe that's my job, but man I tell ya they wear you down. And you just pray the pieces fall into place because you are emotionally tapped. Shifting gears (again), technically we are supposed to have the usual quarterly round of scans very soon (like mid July) but haven't been assigned a due date. So all n' all you can tell we are confused. Our schedule and plan that they had laid out for us seems to have gotten all wishy washy in the past few months. So we started the "squeaky wheel gets the grease method"----- otherwise known as annoying them until we get answers.
But with all that said we are still totally confident we will get the plan back on track. Its just a lil' hiccup in the bureaucratic system. So once we get back on track we will be money. No worries. It will happen, patience is a virtue (lame cliche who the heck came up with that one?). So once we get that 29 finally assigned to us it will be on like donkey kong. And we will be waiting for the pager to blow up with hope! Bring it! We ready! Or as Tammy says "Do it!!!".

Love to you all,
Jenna xoxo

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Mark's Scan

Mark just called me... He got scan results back just now.... And it showed nothing spreading beyond liver. We are so happy and relieved! So next is UCLA and UNOS need to schedule a meeting/conference call (will probably
happen in next 2-3 weeks), and at that point UNOS "should" assign us the MELD score of 29. I wanted to share the fantastic news!!!! I am so happy right now, big weight just lifted off of us. Ahhhh I can breathe again.....
Waiting for the scan result is so nerve racking. So next is waiting on UNOS to assign the 29!!!! Lots of love, Jenna.
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Greetings!!!

(Jenna of course logged on as Mark)... Its been haunting me that we have updated the blog in forever! Procrastinated so long that I got embarrassed and didnt even know what to say. Pushing that aside here is where we stand. January 2010 our scans came back good (all tumors still remaining in the liver only). At that point our MELD score was bumped up to a 27. A year ago they were doing transplants at a MELD score between 27 and 29. But as supply and demand changes so does that, and at this point they are transplanting between 29 and 32. End of March we have another round of scans. If all comes back as expected then we will be assigned a 29. And then the heat is on my friends. The clock will officially start to click loud in our heads and staring at the pager will become a bigger part of our lives. But we are ready (well as ready as one can be). With Jonathan being over 2 now I think in many ways he will be way easier for us to take care of for the 2 or so weeks that Marks in the hospital. But now at this age if Mark isn't around its "when daddy coming back" or vice versa when I am not home. So that part will make it rougher on everyone taking care of Jonathan since we haven't decided what we tell Jonathan about Mark's health stuff. Hmmmmm something to research which I have been meaning to do. Anyway otherwise we are doing really great. Enjoying our time as a family doing normal stuff that families do.... And after being in a holding pattern now for just over 2 yrs, trying to muster up the courage to go to the next level in this process is taking bigger hmmmmm can't think of the proper word... "bigger balls"than I have! Eeeeeks i will also need to research how I can get "bigger balls" HEHE!!! But really I have ZERO doubt that Mark, Jonathan and me are going to be more than okay. When I see my future I see them BOTH in it- so bring it on. I think we are more ready than we realize! A wise woman once said to me "DO IT!!!" And I think we are ready to march forward and do just that ....... "do it"!!!!


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Back On The List

I just got an email from my transplant coordinator this morning letting me know I am back on the liver transplant list. They placed me back at a 25 which is where I was before this whole ordeal. My next checkup is due at the end of January where, if everything is good, I will be bumped up to a 27.

And by the way, 27 is the new 25. When we were first getting on the list a year ago, the average transplant score was between 25 and 27. Those numbers fluctuate depending on the number of livers available in our region. So now a year later, the average transplant score at UCLA is around 28-29. So thus, in January when I move to a 27 I am really just barely keeping up with inflation. Oh well, it just means it will probably be another year before I get the transplant. I've got lots of things to do in the mean time anyway. And right now I am just happy to be back on the list. That's enough for me. Jenna and I were just saying how this feels like someone just told me my cancer is gone. I guess because this is really my only chance at making that a reality.

So what good came out of all of this? Before these troubles I was very unsure about weather I really wanted to do this surgery because it really is a gamble. But now, having it taken away, I'm pretty sure this is what I want to do. It still sucks to have to go through another big surgery but I'm not going to stress about it as much. I have a little more peace of mind.

Jonathan's 2nd birthday is in a few weeks. There was a time when we thought I wouldn't be here to see it. But here I am doing just fine. My big goal has been to make it till he is 3 because that is the age when children develop long term memory and I just want him to remember me. Well now that is just a year away and seems like it will be pretty easy to reach. Along the way we are just going to enjoy the time we have. And if all goes to plan, I will be around much much MUCH longer then that.

Till next time,

Mark

the latest is the greatest

so its jenna again logged on as mark.
as mentioned before the ct scan didn't show any spot in the hip area (where that first octreotide scan showed something). mark went to ucla and our oncologist there said he was confident that the first test showed a false positive result. our liver transplant coordinator at ucla submitted the ct scan that showed no cancer outside of the liver. and now we are waiting to hear back from UNOS. fingers super tightly crossed that UNOS agrees with UCLA and puts Mark back on the list in his same spot with a MELD score of 25. we should hear back within about a week. as the transplant coordinator said this could all just be a hiccup on the radar and we are back to where we were at. i would call it more of a heart attack on the radar (gez oh if this was all just a false alarm i will be so happy!!!). ok thats what we know. we will let you know when we find out our UNOS Transplant status.

Update

We are pleased that todays CT scan didn't show anything in Mark's hip area. We are hoping that the first test was a false positive. Its like you hear of false postives but never think we could be that lucky. Maybe we are. So back to UCLA Monday to see what our oncologist thinks. For now still on hold not on transplant list. We will see what Ucla has to say.
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Monday

UCLA went well. The oncologist there said it would be very rare for M's type of cancer to spread to the hip area. And said there could be a chance that the Octreotide Scan (that should a tumor or cancels of some sort in the hip) could be wrong. He ordered a CT Scan of the Hip and Abodomen area. Once we get those results we are to come back to see him. Lastly we did speak with our Liver transplant coordinator and she put Mark on a "hold" status on the tranplant list until all of this stuff is completely worked out and the doctor's have decided what is going on. Will keep ya posted !
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