UCLA (dis)appointment

We went to UCLA this past week to get some follow up scans done on their MRI and PET scanner and then had a follow up appointment with Dr. Liau.  We did this down there because their PET scanner is more sensitive to low grade glioma cells, which is what we assumed my tumor was because it has presented and acted that way for so many years.  We wanted to see if that was truly the case and the PET scanner at the local hospital here wouldn’t show that.

Well, the news we were dealt was shocking, to say the least.  I really felt like we would be walking away from UCLA with the recommendation to do further surgery to debulk what had subtly grown over the past few years to hopefully decrease my visual symptoms and seizures and then to continue on the Temodar to either keep the tumor stable or try to get some regression if there wasn’t any, already.  When Dr. Liau walked into the room to greet us, she put down a piece of paper that was clearly a copy of my PET scan.  My eyes were immediately drawn to the glaringly large areas of bright red on my brain scan.  Hot spots.  I knew that wasn’t good.  Not only had my tumor continued to grow since the prior scan, which was only two months ago, but the tumor has now become more aggressive, which is logical considering the amount of tumor growth since last August.  So is it a grade 3 or a grade 4?  We’re not sure.  The only way to know for sure is to operate and get some pathology on the tumor.

The tumor board had just reviewed my scans prior to my appointment with her.  There were several recommendations.  One was to go straight to radiation to slow down the increasing growth and aggressiveness of the tumor.  Another was to do an IV chemo, which has much more severe side effects, similar to what one imagines when they think of chemo (i.e. hair loss, vomiting, etc).  The one that we have decided to do is surgery so she can take out as much as she can and then follow that up with radiation.  If you read my past post, I talked about putting off the radiation card because my tumor wouldn’t be that responsive to radiation because the cells weren’t abnormal enough and we weren’t at the point.  We’re there now.  How quickly things can change.  Surgery is scheduled for February 17th.  Almost exactly 3 years to the day as my prior surgery.  This will be surgery number four.  I can’t believe it!  We figured out from these scans that what we thought were two separate tumors is really one large tumor extending into different portions of my brain.  It’s the original inoperable tumor that has made it’s own path into a deeper part of my brain and created another cluster of cells.  I asked her what she thinks she can get out.  She said she thinks she can get out most of the hot spots, which is so important.  There are some that she can’t touch, though.  If these hot spots are grade 4 cells, it would be devastating.  That renames this tumor to a Glioblastoma Multiforme.  It is a horrible diagnosis and I don’t even want to entertain the thought of that by going into detail about implications of it here.  After about a month of healing from surgery, I will begin radiation either in Salem or up in Portland.  It’s 5 days every week for six weeks.  Ugh.  If there is still tumor after all of this, then IV chemo will probably be next.  The fact that my tumor is inoperable and a high grade puts me into a completely different treatment regimen, now.  We can’t just wait around and see what the tumor is going to do.  We have to keep treating the tumor until it’s gone on the scan.

These tumors are notorious to recur within weeks.  It’s going to be a tough battle.  I knew this day would most certainly come when the tumor upgrades.  I guess I just thought after being stable and low grade for seven years, that it wouldn’t all change so quickly.

We really need prayer for peace and comfort right now.  Our kids will be away from us for awhile while we’re down at UCLA for surgery.  Tyler is older and will understand a little more and be able to see by looking at my head how serious my sickness is.  We don’t talk about it much with him.  We know God’s grace is sufficient.  It’s brought us this far.  But I won’t lie.  We’re scared.  It’s really scary to think of what might be.  We try to rest in God, but we’re human and our emotions are strong.  Thank you for loving on us and continuing to pray for us.  We appreciate it more than you’ll ever know.

Semi-Pathology News…

I received an email this morning from Dr. Liau, and here is exactly what she said:

On the road, again…

Ok, not quite.  But only 31 more hours until I can get out of here!!!  I am SO excited about that.  I’ve been emailing back and forth with my neurosurgeon today and she said that my post-op MRI looks good.  I had that done yesterday.  She said that the tumor that she left in there is on the back side of the temporal lobe cavity, next to the brainstem, and that because of the location, it was too hard for her to disinguish between tumor and brainstem, so she stopped.  I’m totally ok with that.  Your brainstem is reponsible for functions such as breathing, etc, so we like to leave that in-tact.  I got my turban removed about an hour ago.  She didn’t leave as much hair this time, as she did the last time.  My head looks like a gigantic upside down question-mark, outlined with staples.  Quite attractive, as you can imagine.  Hopefully the next time you hear from me, we’ll be on the road!!  Yay, it’s almost over.  I can’t wait to see my boys!!!

I’m ba-ack!

Ohmyword!!! What sleep does for a person! We had to pay extra to get a private room, but at the point I was yesterday, I would’ve paid $1000′s to get one. They had me in ICU the night before and I got caught up on all of these doctors/nurse’s lives the entire night. I’m like….and your name is??” Not only all of the noise, but they had the lights on all night, too. Because you’re on the neuro floor, they come ask you questions every hour or so to make sure there aren’t any adverse affects to your brain, besides the obvious ones, from like swelling, strok, etc. The older guy in the bed next to me was so sure that we weren’t in a hospital. We were in a restaurant! I think they finally hauled him off to MRI after really not believing them that he wasn’t actually at a restaurant. And then the older lady next to him, when they asked her what city she was in, she replied “Lousiana!!” I could see where that was a tad confusing for her. At least Los Angeles and Lousiana have the same letters….errrr, right? Thankfully I’m batting 1000 on the neuro questions. I’m hoping to escape tomorrow. I think they would let me go home today, but I really want to wash my hair first, before I leave. I think that will be an easier task in a hospital shower, rather than the motorhome. I’m feeling pretty well. My temporalis muscle is very painful, as it was the same last time. They have to pull the muscle away from my head when they’re doing surgery, so it’s quite aggitated after being pulled on for that long of a period of time. Other than that, now that I’ve had some solid sleep, I’m ready to get on with life!!

As you’ve read, we didn’t totally get the news we were hoping for, as far as getting all the tumor out, etc, but we serve a very big God who knows that I REALLY don’t want to have brain surgery, again. I am believing that this tumor will shrink away to nothing. Between feeding my body what it needs to be fed and doing whatever treatment Dr. Liau recommends, we’re trusting this will be our last trip to LA for brain surgery!

So please keep praying for that. You guys have been amazing with all of your love, prayers and messages. Every single message means so much to me when I’m sitting here in my hospital bed. They are so encouraging, and it’s such a blessing to know that I’m drenched in continual prayer. What a comfort! Well, my eyes are rebelling against me starting at a computer screen, so I’ll get on sometime later and post some more….hopefully from the motorhome, on our way home to get our boys. I love you all!! Thanks, again!

In her private room

We hope all they hear from her tonight is a whole lot of Zzzzzzzzzzz’s coming from her private room. She is very grateful to be there and finally able to get some much needed sleep. She ‘s complaining some of the pain, but if she can sleep, I think it will go a long ways in making that more tolerable. The turban they put on her is tight today and that is causing much of the discomfort. But it is intentionally so and something she’ll just have to get through. She’s already emailing Dr Liau for more information and instructions on when she can get the turban off. Everyone is off to bed early tonight. Tomorrow is a new day. She should have gotten good rest and we can meet up in her room and enjoy the day with her.

PS. Some of you saw a picture of Charysse that I (Kyle) posted earlier tonight. In the best interest of Charysse and Marvin’s son Tyler, I’ve opted to take down the picture in case he were to see it unexpectedly. Tomorrow I will seek permission to repost it here. For now, you can see it off-site, here.

What we know

We are a family of “processors”, meaning we take in the details, consider the facts, weigh the options, etc. etc. before we do much talking.  Yesterday’s news gave us pause to “process”.  Now we can talk about what we learned.  This is what we now know….

1_)  The swelling was definitely new tumor hiding under normal brain tissue.  Dr Liau removed the tumor and the normal brain tissue that was hiding it. Everything that was “safe” to remove, has been removed.

2_)  Tumor cells can be micro-cells and therefore unseen by surgeons.  So, taking all the tissue surrounding the tumor is expedient, just in case there are cells hiding in there.  She did that.  But there is never a guarantee that all abnormal cells were removed.

3_)  There is “white area” near the brain stem. She was not able to remove this because it was not “safe” to remove. There is membrane that surrounds the brain stem and it is into that membrane.   The brain stem has a membrane around it to protect it and thus the tumor, if it is tumor,  should be protected from the brain stem.

4_)   The pathology reports are the next critical piece of information needed to determine what needs to happen next. However, regardless, we know there is a “next” step.  The pathology will confirm if the “white area” is tumor and if so, what grade of tumor.

5_)  While the tumor is “grade 2″, the only real treatment option is surgery and waiting.  Grade 2 tumors will typically upgrade at some point.  When they do, they usually become quite aggressive very quickly.   The risk is in finding them before they have upgraded to level 4.  In Charysse’s case, finding the new tumor now is beneficial.  If the pathology shows that is beginning to upgrade or has upgraded, then we caught it very early.

6_)  Treatment will be dependent on the characteristics of the tumor cells.  They have markers that when analyzed can determine what treatment is most effective.  Until we know if it has upgraded and the characteristics of the cells, we can only guess what is next.  They took five specimens to analyze and we should have those results by Wednesday or Thursday next week.

7_)  Dr Liau has a clinical trial she developed called a brain tumor vaccine. Charysse, as her patient, and if it is upgraded does qualify for this trial.  However, the tumor will have to be upgraded significantly to be the proper course of action at this time.  They have taken what is needed from yesterday’s surgery to be able to culture it for the trial, if needed.  We don’t expect this to be the case, at this point.  However, the clinical is showing amazing results and it’s comforting to know this option exists.

8_)  God is not surprised by any of this.  Charysse will continue to do all she can to ensure her health and wellbeing.  We know that about her.  But more importantly she continues to trust God to lead her, her physicians and her family in the direction she needs to be going.

I’ll be posting a picture of her later this afternoon, so you can all see how great she looks.  She is planning to get out of the hospital on Sunday AM.  Her pain is now under control and tolerable and she just needs some much deserved sleep. In the meantime, “It is what it is.”  We’ll all press on to take each day as it comes and draw strength, wisdom and joy from God and those around us who share in our belief that God is in control.

What a husband!

Marvin was up at the hospital early this AM. Poor guy is not getting much sleep. For him to accomplish this, he has to walk from a parking lot over a mile away. It’s been quite cold and rainy in the AM’s, so we know that was a heart driven to be with his wife to make that trek.  We had a plan to pick him up, but he just couldn’t wait. 

We love how he loves our daughter. It’s heart warming to see how he steps up to take care of every little thing for her to make it easier on her. Like, getting her a private room today. He stepped up to the plate and spent the extra dollars to ensure she will get some sleep today. The “BCU” has not been at all accommodating on that score. It is one big room with lots of people, staff, phones ringing (on the wall at the end of her bed) and rounds of interns (remember it’s a teaching hospital). It’s crazy.

She looks great today. Much more color in her face. And lots of smiles and winks going on between her and her husband. It is very sweet.

Kyle says it best

What my family and I went through today has been tough to describe. Even now, I cannot find the words to express what I am feeling and thinking. Rather than force my thoughts to find words and sentences, the song, Hiding Place by Jared Anderson says it best…for now:

I have found myself a hiding place
I have found myself a secret space
In the shelter of Almighty’s love
In the safety of the Savior’s arms

Though my fears may overwhelm me
And troubles they surround
Though the wind rise up to take me
My hiding place is already found

I will run to the hiding place
I will run to the hiding place
Draw me ever closer to look upon Your face
I will run to the hiding place

What else is there to do?

She looks great!

We finally got in to see Charysse in the “BCU” around 8:30PM.  I’m never sure what we expect her to look like, but she always surprises us at how good she does look.  She was alert and looking around, as though waiting for us.  We answered her bzillion questions and then she was ready to go back to sleep.  She never really gets much relief from any pain meds they offer her, so she is in pain.  But, once they get on top of it, it at least becomes tolerable for her.

She’ll be in the “BCU” until they find a room for her on the neurology floor.  Could be tonight or not until tomorrow.  Last time she was moved around to 3 different rooms in her short stay.  Sounds like we can expect a similar experience again.  The “BCU” is an overflow “ICU” in the basement.  But it was full of probably 20 or more patients.  I’d say that is a significant overflow.

Her left peripheral vision was not affected any more. She was thrilled about that.

I expect her to pop back on line to blog as soon as tomorrow afternoon or so.  Please feel free to flood her with your continued encouraging words.  It’s great medicine!

We’ll all sleep better tonight having seen her and spoken with her.  It’s been a long, long day.  Thank you all so much for helping us hang in there. Your words, thoughts and prayers have seen us through surgery #3.

Surgery is over

Dr Liau just came out to tell us the surgery is over and they are now wrapping her head with the fashionable gauze turban, she referred to.  She was stable throughout the procedure and did very well.  We thank all who prayed today.  We will be able to see her about 7:00 PM PST.

The results of the surgery remain inconclusive.  What we know is that the “swelling” was tumor. It was a new tumor that was growing under the normal brain tissue in an area that was before empty, from the previous surgeries.  It was approximately 3cm, or just over 1 inch.  She was able to remove most of it, but not all. There remains some that is too close to the brain stem to be able to get.  What will need to happen next will be dependent on the results of the labs.  We won’t know that until next Wednesday.

It’s not what we wanted to hear, but we know that God’s hand is in getting us here now and discovering this sooner than later.  He will not leave us as we walk these next days and weeks to come.

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