Scans

Another roller coaster ride

April 30, 2011 By Charysse 20 Comments

I was watching a movie with Tyler the other night. I was on the laptop and only half paying attention to what the movie was really about, but I glanced over and noticed that he was crying. I asked him what was wrong and it took about one second for him to burst into sobs. The movie was harmless. It was about some animals ,but the animals belonged to a family that didn’t have a mom.

“Mom, why would they make a movie where there wasn’t a mom in it? It’s not right. Why would they even think to do that?” He then proceeded to tell me how worried he is about me and it didn’t take long before I grabbed him and was holding him tightly in my lap trying to be the strong parent and not show that I am constantly fearful of that scenario for our family, as well. The kids. Cancer is so much harder because of the kids. The thought of my kids not having both parents around growing up is so hard to swallow. Everybody keeps telling me to just trust, that God knows what He’s doing, that His grace will bring us through. As a Christian, I know all of these things. I really do, and I believe them. But when we keep getting hammered with bad news, it’s really hard to remain peaceful about the situation. It feels like there hasn’t been any time to just relax and come up for air for so long now.

I’ve been having some complications since beginning radiation toward the beginning of April. They are just minor, mostly pain. Because the symptoms didn’t start out as pain, but had actually progressed to that, my radiation oncologist decided it would be a good idea to do a MRI scan to see if there was something going on with the tumors that might be the source of the symptoms. The scan showed that one of the tumors is growing new fingers that have gone deeper behind the occipital lobe. The scan also showed several areas of enhancement that may or may not be new areas of tumor formation. My brain has also filled up with fluid and inflammation, once again, as it did before this last surgery. It’s surprising that I’m not having more symptoms from that, but I’m on four seizure medications, so that is probably a good thing and may be what is keeping any seizure activity at bay.

At this point, they are remapping the radiation field to target the new area of tumor growth more heavily. It was already receiving some radiation, but not enough. The bummer of all of this is that more brain will have to get irradiated in addition to the extremely large amount that already is receiving it. Please pray, pray, PRAY that the new areas of enhancement are not tumor. These tumors have wheels and once they start producing satellite tumors like that, they are extremely hard to slow down and turn into freight trains. I’ll be totally honest. I’m scared. I’m really scared. I need peace. My family needs so much healing and peace right now. These past several months have really taken a toll on everybody. We need rest.

Once radiation is over, which now won’t be until June because of all of the delays, they will possibly have to install a shunt in my brain to drain out all of this accumulated fluid. My scan is being sent to UCLA and they will review it at tumor board, which meets on Wednesdays. I think the only new piece of information that may come from them is the possibility of starting chemo now, rather than waiting to see if radiation can control these tumors. Like I said, it’s better to stay ahead of these tumors than to try and play catch up.

It is so obvious to me the lesson that God is teaching me over these past several months. Control. It’s not about mine. I have none. All of the control I thought I had when it came to treatment and being able to keep this tumor in check with it through my research, etc., doesn’t matter at this point. The tumors are growing. Nothing is stopping them. At this point, it seems that only He can. I think He wants it that way. Full submission. It’s what it’s all about, right? I’m so stubborn, but He has backed me into a corner. He’s getting me to a place where it’s becoming an easy choice to lay it down because that’s all I can do.

I am so incredibly thankful for all of you who have been so faithful in praying for us. It is really the only thing that is getting us through this time. I could never have even dreamed what the next six months would hold after that big seizure I had last fall. We feel so often like there is no way we could be stretched more than we are at the moment and yet God continues to give us the strength and then, yes, stretches us some more. He is faithful, no doubt. But I believe that He is answering the prayers of so many like you. We have been so blessed by meals, cards, gifts, so much from so many friends and people we don’t even know! I know so many of these people I speak of are reading this blog, so thank you! Thank you from the very depth of my heart! I wish I could hug each and every one of you!

Filed Under: Health updates, Scans, UCLA

UCLA (dis)appointment

January 22, 2011 By Charysse 31 Comments

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.

Filed Under: Appointments, Brain Surgery, Health updates, Linda Liau, Scans

So much to talk about!

December 13, 2010 By Charysse 20 Comments

I’ve learned about myself over these past few years that when the going gets tough, I tend to internalize. I could have written about 10 blog entries over the past two months with all of the latest drama that I have mustered up, but I guess I haven’t really been to the point where I actually want to sit down and talk about it. I don’t really like to now, but I know that a lot of friends and family come here to keep up to date, so here it is!

It started on an evening back in October. I was sitting in the living room with the boys and my visual seizure aura popped into my vision. I hate that thing! I’m so incredibly thankful for these auras, though. I know at the point that aura comes on, that I have about 30 seconds to find a safe place to lay down before everything in my vision is swirling so much that I have to close my eyes to keep the pain away of my eyes trying to focus on one thing. So I run into my bedroom and laid down on my bed. I know it’s a safe place for me when I finally go into the seizure and become unconscious. Marvin runs to my side while I’m lying on the bed. I’m actually able to get my breathing under control while my aura is still circling in my vision. Usually my heart is racing and I am panicking by now. I was praying that the aura would subside and that the seizure would never progress. Not at all to be. Not only did I have one seizure, but my seizure progressed into status epilepticus. What? Status epilepticus?? I’ve read about that! Do you know that people often die from being in that state? Those thoughts all ran through my head in about .9 seconds. What that meant for me was that my original seizure kept rolling into another seizure, which turned into three seizures. I never regained consciousness for more than a few seconds between each one and not at all between one of them. Scary. What was even more disturbing was that at the end of my seizure, I lost all functioning on the left side of my body, from my head down to my toes. I woke up and heard Marvin keep telling me to wiggle my left toes. I was wiggling my toes and was getting so irritated with him because he kept making the request, but what I thought were my left toes I was wiggling, were merely just the right. He called the paramedics and I went to the hospital to make sure that all of my blood work and vitals were good, which they were, so then I could go home and sleep. If I would have been more alert, I would have pushed for a scan to make sure that the tumor was behaving. Any ordinary breakthrough seizure can signal tumor growth, let alone a seizure that turns into epilepticus. It was really late at night and the ER doctor thought it would be too much of a hassle to try and get a read, so he just sent us home.

The next day, I started having some lingering numbing sensations throughout the left side of my body, which absolutely frightened me, so I went back to the ER. This time, though, I wasn’t leaving until somebody stuck me in a MRI machine to see what was going on in my noggin’. Thankfully the people at the hospital are so absolutely wonderful to me and they were able to squeeze me into a slot to get a scan right away. It didn’t take too long for the ER doc to come over and tell us what I had already suspected: tumor growth. He sat down with the radiologist and the radiologist had just told him that there was small growth of the tumor. I had 20 other questions about this new “growth” that the ER doctor didn’t know the answer to, so I called the radiologist the next day. He was great and went over my scan with me. He said that yes, there is an increase in the signal abnormality (that is how tumors show up on MRIs), indicating growth. Ok. But, there was a bigger issue he was concerned about. Ugh. I have some ventricles in the right side of my brain that had slightly enlarged. Was it trapping of cerebral spinal fluid, or could it be an “extension of disease”? He wasn’t sure, so scans were sent to UCLA for their review.

It was an eternity until I was finally able to speak with Dr. Liau on the phone about what the consensus of the tumor board was about my scan. She had already mentioned to me in a prior email that they said there was growth, so my gut had been twisting for a few days, already, in anticipation for what they were going to say.

Finally, around 10 am on a Thursday morning, I got the call. It is the sweetest voice on the other end. She stammers a little bit and asks how I’m feeling. She is so incredibly compassionate. Neurosurgeons don’t make personal phone calls, especially when you’re a nationally renowned neurosurgeon. She wanted me to know that, yes, there was some growth in the tumor. I couldn’t bare the anticipation any longer, so I asked her before she could say it. Is there another tumor? Yes, she says. I asked how big and she said that she thought around the same size as the other, which is a little less than one inch. The new tumor is in the Insula. It is too deep to operate, much like the original tumor, so removing it isn’t an option. My gut is sick and now on the floor for the remainder of the conversation. But she is just so sweet. I’m talking to this woman, and she is handing me the most horrible news anybody has probably ever handed me, and I just want to reach through the phone and hug her!

So what’s the recommendation? The tumor board, which I guess I should explain what that is. The tumor board is a group of radiologists, doctors, oncologists, neurologists and professors that work at UCLA and gather together every Wednesday morning to review patient scans. They reviewed my scan and the consensus was surgery and radiation. Confused, I told her that I thought the tumors were inoperable, holding out the very, very slightest (I knew) of hope that maybe something changed and it was all of a sudden operable. She told me the original tumor has had very subtle growth since my last surgery in February of 2008, so they recommended her taking out that tiny growth. Bummer. I was shooting for her taking the whole thing out. They would go after this small of a tumor for two reasons. One is to get some pathology to see what the exact grade of the tumor is. The other would be to alleviate some of these symptoms that I have. The biggest bummer about tumors in the brain is that it doesn’t take much of anything to disrupt something else in a big way. The tiniest amount of growth that I’ve had has affected my vision enormously. This tiny growth has caused my seizures to have gotten to the point where I’m now on 3 seizure medications to try and control them!

What did we decide? She knows that I’m not willing to use the radiation card, yet. I will do radiation at the point when the tumor is high grade and will more likely respond to the damaging effects of the radiation. With low grade tumors, which we’re assuming mine are, the cells are not extremely abnormal, as they are in higher grades. The more abnormal the cell, the more fragile the cell and susceptible to whatever is being thrown it’s way to kill it. We’re not there, yet.

We decided that surgery is too aggressive right now. The risks outweigh the benefits and we wouldn’t treat any differently than what we’re already going to do, anyways. We’ll put that off.

So Temodar, it is. I started my first round of chemo, after being off for a couple of years, a couple of weeks ago. I got quite sick from it this time around. Everybody swears that I was this sick last time I was doing it, too, but I don’t remember it being anything like this. I guess that’s the part of your brain that blocks out the bad, remembers the good. I have a much better game plan in place for when I start this next round to hopefully stay ahead and ward off any of the side effects from it. The next round begins the day after Christmas.

I was quite thankful that Dr. Liau and I were on the same page about which treatment to pursue right now. Any of you who know me or who have read my blog know that I am definitely one to make my own decisions. I am in constant contact with several doctors that manage different aspects of my disease. I love having that many people because I can get several different opinions and then pick out what I agree with and what I don’t. Ultimately, it’s my body and these are my decisions. I have been so blessed with Dr. Liau because she has been supportive in all of my decisions, namely the one to go off of chemo and stay only on homeopathic IV treatment. She is a gem.

And speaking of the homeopathic stuff, my naturopath and I have started that up again in full force. If you’ve been following this blog, that has been my main treatment since I visited a natural cancer clinic in Oklahoma a couple of years ago. Since we were having such success with it, we decided to cut back on the aggressiveness of the treatment this past summer to see if we could back off, but still keep the tumor in check. A big part of this decision was because of the expense. It’s not a cheap decision to go the homeopathic road, but I believe in it with all of my heart! The other reason was the time/emotional commitment of being hooked up to an IV pole everyday, although I am fortunate enough to be able to do that at home while watching football.

So after taking much of the summer off of doing any treatment, which was a much needed/loved break, we’re hitting it as heavy as we can right now. I know enough about these tumors to allow my mind to be satan’s playground right now. I’m really struggling with trust. I know what these tumors can do, how quickly they can kill. What if that’s God’s will? I’m having such a hard time letting that go and laying it down at His feet. I know, I know, I KNOW that His grace is so sufficient. It has been so evident in our life when this journey started almost 7 years ago. He has a plan. He has a purpose. I need to be ok with whatever that might look like.

Many of you are asking what the next step is. Marvin and I will fly down to UCLA in January so that I can get an MRI and a DOPA PET scan done on their machines. The DOPA PET, as opposed to the more common FDG PET, is more sensitive to low grade tumor cells. It can better distinguish low grade tumor cells from swelling, scar tissue, or anything else that may just be something benign. It’s an easier way to know exactly what we’re dealing with, without having to go under the knife at this point. If those scans show some significant growth, then surgery will most likely ensue ASAP to get out whatever she can. A decision will have to be made at that point of whether to do radiation or not. Dr. Liau said that if there is just some minor growth on this next scan, that we will likely just continue on the Temodar to see if we can get some response from the tumors.

So that is the plan at this point. Temodar, homeopathic IVs and a TON of prayer. There is no treatment more hopeful than prayer! Thank you so much for your outpouring of love upon me and my family. I am continually in awe and humbled by the cards, the calls, the meals, the hugs, absolutely everything that you guys shower upon us all of the time. It’s only by God’s grace and with friends and family wrapping their arms around us like you do, that is getting us through this extremely difficult time. Just to let you know, we are not sharing a whole lot with our kids about this. Trent is too young. Tyler knows I have a tumor. He knows it causes the seizures that he unfortunately has had to witness on more than one occasion. We haven’t told Tyler about the second tumor. We figure, why? If there comes a time when we need to sit down and talk about it more, then we will do that. We are wholeheartedly believing, though, that it will never come to that time. We are believing in God’s faithfulness and His healing hand in my life!

Thank you, again, for all you do. We cling to your prayers and covet them every single minute of every single day.

With so much love….

Charysse

Filed Under: Health updates, Linda Liau, Scans Tagged With: brain tumor, Linda Liau, low grade glioma, low grade oligo-astrocytoma, seizure, Temodar, UCLA

Stable!

February 26, 2010 By Charysse 3 Comments

The results of my MRI showed the tumor to be stable since my last scan, which was almost 3 months ago. How blessed am I? This time spent off of treatment was great not only for a break, but so much better for my relationship with God. I loved it. I loved that when the fear crept into my head about being off of treatment and the implications it would have for the outcome of this scan, I remembered that I handed it all over to Him, and then I could breathe a sigh of relief. It was up to him. He wanted me to do this, so I had to trust him to take care of it. And he did!

I challenge any of you going through an extremely difficult situation to put yourself (responsibly) in a position where you have to rely upon Him and his help and guidance. The bondage of the crisis melts away and you often become more free than before the crisis began. God is so faithful. Why do we so often doubt?

I posted a testimonial for my naturopath on his new website. Part of that testimonial said this: In my world of cancer, he has by far become my most important ally. I have six doctors that I deal with regularly. Five of these doctors mean really well when it comes to treating my cancer. Dr. Nigh is the only one who has taught me that my body must first become well, in order to treat this cancer successfully.

I look at my cancer journey in a similar way spiritually. I feel like God is teaching me that my relationship with him must become well, too, as part of this healing process. Not that God can’t and wouldn’t heal me anyways, but for me, these past few weeks of having to lean completely on him was a breakthrough in my relationship with him. My whole hope and trust was put in him, and the rewards of that have been amazing. I don’t live everyday in fear of the unknown. It’s in his hands and I feel like I’m doing my part in putting my body on the path to wellness and I think that he will bless that. I truly believe that our body was meant to be self healing and that if we treat it correctly and give it the proper nutrition, that it will remain well.

My naturopath and I decided yesterday that the plan will be to do one day of treatment every week. One day on, six days off. Love it. It’s a great treatment plan. These tumors like to explode and upgrade overnight, so the treatment that I’m doing should keep that in check, but not overwhelm and alter my daily living.

God is good. The people he has surrounded me with are incredible. It is an absolute treasure and gift to be taken care of as well as I am.

If you’re dealing with something that is overwhelming, give it to him. He wants to take it and let you rest in his palm. Do it and you will be blessed.

I can tell you a little bit about that…

Filed Under: Scans Tagged With: astrocytoma, brain tumor, DMSO, Dr. Greg Nigh, high dose vitamin C, low grade oligo-astrocytoma, mixed glioma, Nature Cures Clinic, naturopathic medicine, olig-astrocytoma, oligodendroglioma, Scans

Health updates

December 22, 2009 By Charysse Leave a Comment

For those of you who are on this site to monitor what kind of treatment that I am doing that may be helpful in deciding your treatment plan, I am now adding which treatments that I’ve been doing in between scans on the ‘Health updates’ page. You will be able to see the effects of the listed treatments based upon the corresponding test results. Thought that might be helpful…

Filed Under: Scans, Treatment Tagged With: Scans, Treatments

Scan time, again…

December 14, 2009 By Charysse 2 Comments

I recently had a PET and MRI scan done on December 1st. Both scans are showing the tumor to be stable. Amazing news! We decided after the last scan to take out the chemo (Temodar) and just do the natural IV treatment that I’ve been doing over the past 18 months. We didn’t really feel like we were taking much of a risk because I only did 1 round of chemo in the 2 months before the scan that showed a reduction in tumor size. Our rationale is that this chemo is known to make these tumors act more aggressively (you can read about this study here), so if we can keep my tumor under control with just natural means, and especially shrink it up some more, then that is definitely the path we want to take.

So the plan now is to keep alternating a week of DMSO, followed by a week of high dose vitamin C. We won’t resume chemo unless something changes down the road. My oncologist agreed that this was a good plan, and actually wouldn’t prescribe me more chemo when I met with her the other day. She thought it was illogical to be on chemo if your tumor isn’t growing when you’re not on it. What a breath of fresh air she is.

Even though I’m extremely blessed with a tumor that is not acting aggressively, I’ve been struggling with a bit of depression lately. I’m so ready for life to just be ‘normal’, whatever that really means. It’s hard not to get discouraged by having to carve time out of everyday to deal with this tumor. It’s physically and emotionally draining having to do treatment on a daily basis. My brain tumor is never far from our thoughts. It’s extremely expensive to do what I’m doing, so the financial strain adds to all of the emotions, as well. A lot of people in the ‘cancer world’ talk about living life from scan to scan. It’s not a healthy outlook, but it is one that is hard to avoid. After I have a scan, I’m already thinking about the next scan not too far down the road. There are some people in my life that have told me “where’s your faith?” A very unfair (and insensitive) question coming from somebody that is not being faced with a life threatening illness. I am human. I am young. I have a family that I want to take care of for the next 50 years. It’s hard not to focus on that.

But I do know that I serve a God that can heal. He knows what I need, when I need it, how I need it. Do I believe that he will heal me of this tumor? Yes! But until then, I’m going to struggle with my human-ness. Not everyday is going to be an easy day. God has been so good to me throughout this journey, so I know that he is there. He is definitely there. I am so thankful for all of your prayers and encouragement. I would be lost without that. I would be lost without God in all of this.

He loves me. He’ll take care of me. He’ll heal me.

And then we’ll stand in awe of all of it.

Filed Under: Scans, Uncategorized Tagged With: Scans

MRI scan results

September 15, 2009 By Charysse 3 Comments

I guess it’s been awhile since I’ve been hanging out here. Facebook makes for lazy bloggers, I think. Most of you know that I had a scan this morning. The scan was read extremely quickly, which is probably attributed to the fact that I had to be at the hospital at 6:30. I knew there was a reason that I had a ridiculous appointment time. Anyways, I am so humbled to say that the tumor has shown a subtle decrease in volume, which means the tumor is smaller than it was 8 weeks ago!!! Amazing. Completely amazing. There were so many reasons that we would not have been surprised if this scan showed growth because of an increase in symptoms over the past few weeks, including quite a bit of seizure activity. We would’ve been so blessed to have a stable scan, so a tumor size reduction is absolutely thrilling! I believe very strongly in the treatment that I have been doing, but I believe even more strongly in a God that answers prayer. And He has. And I am so blessed.

I won’t meet with my naturopathic doctor until next week, but I’m assuming that we’ll keep the treatment plan the same. For those of you wondering what that is, I’ve been doing the following treatment for the past 8 weeks since my last scan:

Alternating Temodar (chemo), High dose Vitamin C and DMSO

I have been overwhelmed with the volume of messages that I have received over the past few days of encouragement, love and support. All of you who are constantly praying for us and sending us encouragement are such an integral part of us getting through this cancer journey. It is hard. So hard. But because of you, we are blessed. And I truly can’t say that I would change a thing. It’s so obvious in hindsight that every little detail has been worked out by God and has happened for a reason. And there’s something extremely gratifying and rewarding about that. We are hoping that we will soon be finding gratification in things other than those associated with a brain tumor, but we are believing that this reduction in tumor size is just the start of amazing things still to be seen on this journey.

Filed Under: Fodder, Scans Tagged With: Scans

You might be a redneck if….you build your pool out of hay bales and tarps

August 5, 2009 By Charysse Leave a Comment

Wow. Summer is halfway over. The weather has been amazing and so we’re trying to soak up as much Vitamin D, as we all know the rain is just around the corner. The only good thing about that will be that I will actually sit down and write some more because I won’t feel guilty about sitting in front of the computer.

The days around here seem to go especially quickly because farm life is so crazy this time of year. The thing that is lovely about this summer, as opposed to the last, is that the guys aren’t building a new milking parlor in addition to all of the other madness. Hay is cut and baled, lagoons are being emptied and it will soon be silage time. For all of you that don’t understand what any of that means, just know that it means 10-12 hour working days for the next couple of months.

Tyler and Trent have been busy outside. They are so cute with their white hair and tan faces. Marvin built them a pool, which I’m sure a lot of you saw the pictures on Facebook. If you’re already on Facebook, you can request to see them here, if you would like. For those that didn’t, I’ll try and get a picture posted here. It’s not uploading right now. Here’s the blueprint for you and all your friends: He took 8 big bales of hay, placed them into a rectangle and then put a 200 foot tarp and draped it over them. He then proceeded to fill up the middle of the ‘rectangle’ with water. I have to admit I was so irritated when he first told me what he was doing. He kept telling me that he had such a good idea for a swimming pool and that he was going to surprise us with it. Yeah, surprise is a great descriptor for what it was. But the guy is brilliant. It is the perfect pool and it was extremely cost effective to boot, mainly because we already own those huge hay bales. So it’s been a great source of entertainment for Tyler and Trent, and a great source for getting a tan during their nap time.

Remember when I was concerned that Trent wasn’t talking yet, and all of you told me to just enjoy the silence because he would be soon enough? Soon enough has now arrived. The boy talks as much as Tyler now. The only difference is that only half of what he says can be understood. Tyler has been doing a lot of activities away from Trent, so I think that it has finally given Trent a chance to get a word in edgewise and it’s starting to ‘click’. It’s surprising how competitive the boys are even with 3 1/2 years difference in age. I’m looking forward to school starting. I think Tyler is going to absolutely love it. His favorite thing, aside from being down on the dairy every second that he can, is to work in his workbooks. I love that he’s so self-motivated and such a smart kid, but it’s really hard to keep him stimulated, and a bored Tyler is not a good Tyler. I’ve been told that is what is referred to as “payback”.

On the medical front, I finally heard back from Dr. Liau. She said that she reviewed my scan and that she agreed that it looked stable. She did suggest, however, that we keep watching it closely. This means I’ll be getting another scan done on September 8th. The thing that sucks about that is going through the agonizing process of anticipating the results so quickly after just going through it. But on the flip-side, it’ll be such a short window of time, that we’ll be more confident that not much probably changed, if anything. Her main concern is that this tumor is trying so hard to become a grade 3, but just can’t quite get there, much to our delight. So she wants to stay ahead of it. On a side note, for all of you brain tumor patients that read this blog, there is a brain tumor conference coming up in September in Oregon. You can check out the details here.

I’m still doing IV therapy through the same clinic I’ve been going to in Portland for the past year, which includes DMSO and high dose Vitamin C. When I’m not on chemo, then I’m taking one of those. This last round of chemo was a little rough, but otherwise I’m feeling really well. I’m at least able to keep with a 3 and 6 year old, so I guess that says something.

I know this is becoming redundant, but we can’t thank you all enough for the ways that you support us. We would be lost in this mess without each of you by our side, so thank you so much…

Filed Under: Fodder, Just life, Scans, Treatment, Tulsa Treatment Tagged With: Linda Liau, Scans

Livin’ on a prayer….and DMSO

July 16, 2009 By Charysse 1 Comment

First, you should know that I give the glory to God for answered prayers. I am so thankful for every single prayer that has been lifted up upon my behalf. I’m thankful for the 156 members that signed up almost immediately for the Facebook group that was created to pray for my upcoming scans. I’m thankful for the endless amount of emails, cards, phone calls and people that tell me that their bible study, etc. is praying for me. More than anything in my treatment plan, I believe that prayer is the most important and the most effective. I’m so fortunate that I was raised in a family that believes that we serve a God that can heal and answer prayer. I take so much comfort and hope in that.

With all that said, I think that DMSO is proving it’s importance, as well. By the time of my last scan, I had been on chemo for 3 months and it didn’t seem to be working because the tumor was still growing. We’ll never know for sure, but with the addition of more frequent DMSO treatment since my last scan in May, my tumor is now stable and is not showing any sugar uptake on my PET scan. What this means is that the tumor has not grown since May and it is presenting as a completely low grade tumor. In the area of tumor growth on my scans in February and May, that area was up-taking sugar faster than the brain cells surrounding it. This indicates active cancer cells, which was confirmed by the tumor growth. We are now in a similar situation to last summer after going to Oklahoma. The tumor was presenting as a high grade tumor before starting the natural treatment and then was low grade after doing a couple rounds of the treatment. I was doing fairly high doses of DMSO at that time, as well. This is amazing news! If there was growth on this scan, I would’ve had to make the agonizing decision of whether or not to do radiation. I can’t put into words the relief of not having to do this.

At this point we’re going to just keep on doing what we’ve been doing. The fact that the DMSO seems to be doing the trick is a bit bitter-sweet. It’s a bummer having to deal with the odor, but I guess it’s better to be around and smell a bit, than to not be around at all, eh?

We’re still waiting to hear from UCLA and will probably make a decision of the next scan date based on their recommendation, but for now we’re just going to bask in my scan results. Thank you, again, for all the ways you are showing us your love and for your prayers. We are blessed.

Filed Under: Scans

The month of June….where did it go?

June 30, 2009 By Charysse 2 Comments

I thought I should post a blog since it’s been a very long time. It’s been challenging to have time and actually want to sit down at the computer lately. I love summer! I was supposed to have scans this morning, but they had to get changed to next Tuesday due to a scheduling conflict. This is closer to 8 weeks from the last, anyways. Life has been quite busy lately. Between my endless medical appointments and summertime with the kids, there is always something going on. It’s so nice to have Tyler home to play with Trent in the mornings. They are becoming quite close now, so it’s fun to watch them grow together. Whenever they’ve been apart and see each other again, they always give each other a big hug and pat each other on the back. SO cute. Think that will last for the next 10 years? Neither do I.

We were able to get about 1000 miles away from cows and doctors for 8 days in California a couple weeks ago. We spent a little bit of time in northern California with Johnny and Melinda (Marvin’s sister) at their house and then headed down to San Diego with them for a week. We hit up Sea World, the beach, stayed at an RV resort that was right on the bay and just hung out. It was amazing. The weather was perfect, the company was perfect, it couldn’t have been a better week. It was a much needed break for our family. Marvin has been going 24/7 with the dairy for the past year and if he’s not working, he’s dealing with some kind of medical something in my life. I actually went a couple of days on this vacation without once thinking about this tumor. I am not at all exaggerating when I say that it has been a couple of years since that has happened, probably before my tumor recurrence. So that was amazing to be able to be so distracted by having fun that we didn’t think about all of the other ‘stuff’ going on in our lives.

We’ve had some tough times in our house lately. Because Tyler is getting older and aware of a lot more now than he was when he was younger, he’s now asking why I have to go to the hospital and doctors so often. He starts crying if I have any focal seizures come on and he’s with me because he’s scared. He’s seen a couple of my grand mal seizures which doesn’t help that situation. He tells me all the time that he’s worried about me. It’s heartbreaking to watch him deal with all of this. We are praying, pleading that these next scans show some good news. We could sure use some!

Trent is finally putting forth more effort to talk. It’s about time! It’s really cute. We’re hoping he learns to speak well soon, but just not as much as his brother does(-;

I’m still doing chemo which is going ok, as well as natural IV therapies. We’re hoping to create some sort of synergy with the 2 different treatments to get a response from this tumor. If the scan shows some growth, it will be a very hard decision of how to proceed. Radiation is recommended by all doctors, but since we’ve been told that it won’t help me live longer anyways, and it could cause some pretty significant side effects including causing a high grade tumor of what I already have, then it seems illogical to go down this road. So we’ll just take it a day at a time. The story of our lives…

We still feel blessed, though. We have so many loving and supportive people around us. We know we are covered in prayer and serving a God that can heal. We are claiming healing in my life, hopefully sooner rather than later. We know God is good so we’re just resting in that. I will post with results when we get them. Scans are July 7th (how is it July already???), so hopefully by the end of next week we’ll get some news. Until then…

Filed Under: Appointments, Scans