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.

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…

I am officially legal to drive, again. Woohoo!! I had my appointment with my neurologist on Wednesday and she said I could drive, as long as it wasn’t in front of her house. She said that my EEG from a couple of weeks ago looked good. My brain isn’t “twitchy”, which means it’s not getting epileptical spikes, which would indicate seizure activity. That is very good news for me. A little more comforting when I’m out running around, that I don’t have a twitchy brain. So, I went to town with kids in tow for the first time yesterday, in months. Actually, I just had Trent. It was actually really fun. I felt like such a grown up. It’s hard to explain the feeling I get when I can start driving again to people who have never had that privilege taken away, but just know it’s pure joy! The other thing that my neurologist said, is that she did her residency at OHSU and worked with Dr. Neuwelt, the new neuro-oncologist that I’ll be seeing this week. She said that he is great, and that she loves him. That is SO comforting to me, that he has a great bedside manner. You never know with doctors that have a lot of medical “power”. He is the head of the blood brain barrier program at OHSU. And a lot of these brain doctors seem to let the phrase “It’s not like it’s brain surgery” go to their head….if you know what I mean.

I also had my first appointment with an acupuncturist this week. I have a lot of pain down the right side of my body, stemming from the temporalis muscle that has to get stretched and pulled away for each brain surgery that I have. I’ve heard wonderful things about acupuncture and pain, so I thought I would give it a shot. It’s a little Chinese lady and she was full of information. She told me that I should definitely NOT be feeding my body 2 cloves of garlic everyday, as I do in my juicing. Marvin wasn’t too crazy about me going to an acupuncturist, but I think that alone was worth the money, for him. She said that that much garlic can inflame my digestive track and trigger inflammation in the rest of my body. Interesting. So for now, I’ve removed the garlic from my juice, and will just stick to cooking with it, instead. She also gave me an herbal “formula”, as she’s an herbalist, too. It’s supposed to detox my body and give me more energy. I had quite a bit before, and have been detoxing for awhile, but I figure it definitely can’t hurt. I’ll keep you posted about how the pain management goes, in case you may be wanting to try it out. I will see her weekly for awhile.

The other thing that I have decided to do is to hire a nutritionist. There is a lady who’s name I’ve come across several times over the past few years. She is a nutritionist in Utah, that has a PhD and specializes in brain tumors. I think that I’ve fine-tuned my diet pretty well, but there is only so much that I can do on my own. She will monitor my bloodwork, looking for different things that I’m lacking or have too much of. These are things such as copper, vitamin levels, heavy metals, etc…I sent her all of my pathology and MRI reports, as well as other medical history. She will send me a tailored report, once she has my bloodwork, of what kind of a diet/supplemental/exercise program I should be on. She is almost always a keynote speaker at brain tumor conferences. She just attended the conference at UCLA, for the latest treatments for brain tumors. That is so comforting that she is educated on all of the latest treatments for brain tumors. I think she will be a great source of information for me!!

This coming week is a big week for us. I have an MRI on Thursday, which I will take the CD with the scan on it to my appointment with Dr. Neuwelt on Friday. He will review it while we are there, and then we’ll talk about the next step. I’m working very hard on laying this one down at my father’s feet on a daily basis. It’s so easy to let satan creep into my thoughts. Your prayers will be especially coveted this week for peace, comfort and a great scan. A clean scan would be a miracle, which we are praying for! A stable scan would be amazing, as well. If the tumor has grown at all, I will probably have to start treatment now, rather than wait until after we get back from Maui, but we are standing with confidence that it will be good news!

Other than that, it’s life as usual. Tyler is sooo ready for Kindergarten. He is bored and just doesn’t understand why there are so many rainy days on the internet (weather forecast) all the time. He also can’t wait for Trent to not be a baby anymore, because babies are just so breakable. He means that Trent knocks over the things that he’s building all the time. So…cute. Trent is growing so fast. We think he’ll be bigger than Tyler. I’m trying to tell Tyler to be nice to him all the time, because one day the tables may turn. Trent will be getting his first haircut tonight. I’ve finally decided that since his hair is so long that it’s wrapping up around his ears, that it’s time. It’s just so incredibly cute! He has these perfect white haired ringlets. It will be sad to see them go, but the waitress at Applebees the other night asked if “she” needed a high chair…

We are so blessed by all of you who are praying for us, sending us cards, emails, messages….it’s so humbling. We’ll keep you posted on our news this week.

I made an appointment for Trent today, to get his 12 month vaccinations that we are a little tardy in getting. I guess it hasn’t been a huge priority for me the past few months, with everything going on. The bigger part of it, though, is that I just hate doing them. I hate sitting there with my smiling child staring up at me, wondering why I’m holding him on some cold, crinkly paper on a table.Sooo trusting, and then poke (insert BIG scream and crocodile tears). I hate it!! The other thing that is troublesome is the controversy we always hear about, surrounding vaccines. I’m supportive of vaccinations, but I hate that they put things like mercury in them. You always see stories on the news about vaccinations linked to autism, etc…because of the mercury. I found this excerpt today:By age two, American children have received 237 micrograms of mercury through vaccines alone, which far exceeds current EPA “safe” levels of .1mcg/kg. per day. That’s one-tenth of a microgram, not one microgram.Why would I subject my child to that danger? Do the benefits outweigh the risks? I would have to say….yes. BUT, this is what I’m going to offset the potential risks that come with the mercury exposure. Since these vaccinations are high in mercury and a young, growing brain absorbs that mercury more than any other part of their body, I’m going to load my child’ssippy cup up with vitamins, juice and some powdered chlorella. Check this out: Experiments conducted in numerous countries have shown that the indigestible cellulose of chlorella’s cell wall attracts and binds with heavy-metal poisons such as lead, mercury and cadmium and with hydrocarbon pesticides and Insecticides such as DDT. PCB’S andkepone , carrying them out of the body. These environmental poisons are thought to be major contributors to free radical activity, resulting in cancer, brain damage, liver and kidney failure and many other serious, life-threatening conditions. Chlorella’s ability to rid the body of these Increasingly common toxic pollutants is one more feature that sets it apart from other ‘green’ supplements.
Chlorella is a powder that you can get at your local health food store or online. It has a very mild taste. My kids have never noticed it in their juice, before. So there you go. Problem solved!

Anti-biotics is always another hot issue. If you ever have to go on anti-biotics, please chase it with a pro-biotic! Do you ever hear about how common it is for people who are on anti-biotics to develop things like yeast infection, thrush, etc…? These are all yeast/fungal overgrowths. The anti-biotics job is to strip your body of bacteria. It doesn’t know how to distinguish between good and bad bacteria, so it takes it all, in an effort to fight off the infection that exists in your body. But our bodies naturally are lined with good bacteria, so when it’s taken out, it needs to be put back in. This good bacteria is responsible for going through your body on a daily basis, eating up any germs, fungus, bacteria, etc….to assist your immune system in fighting off disease. So that’s why patients on anti-biotics experience those yeast side-effects. Your body cannot re-create this bacteria by itself, once it has been taken away. You have to replenish it. These come in powdered forms, as well, that is in children’s strength. You can add that to thesippy cup, too. I do it everyday for my boys. Adults, check out Dr. Ohirra’s probiotics at www.iherb.com. I think probiotics are a must have addition to your daily multi-vitamin. Our diets are full of sugar and junk. These will help your body to offset the harmful effects of what we feed it.

I know this is random, but the issue of vaccinations was on my sister-in-law’s blog the other day and we’re getting ready to get them, so I thought I would share some tips on how to feel good about them. ..

OK. So I emailed her back to ask her about starting chemo, rather than radiation. Here is what she said: This is a very good question. Our neuro-oncologists recommended starting with radiation, but I know some neuro-oncologists at other centers would advocate starting with Temodar first. There’s no clear “right” or “wrong” answer, in terms of which you should do first. I think it would be a good idea for you to get a consultation from your local oncologists at OHSU and see what they would recommend. Because your tumor was really a borderline grade II/III, I don’t think you necessarily need to start treatment immediately. Go ahead and enjoy your trip to Maui, get a follow-up MRI scan in May, then we can decide on your treatment plan after that.
So, needless to say, we are very happy about that!! That gives me a couple of months to stay on my diet, and hopefully shrink the remaining tumor down to nothing. Go immune system!!  Things are going very well here. Marvin is back to work, which is so great for him to be back in a routine. I’ve been able to get back to work, almost as many hours as I was doing before surgery, so that is soooo wonderful. We got our papers to sign Tyler up for Kindergarten next fall, and Trent is into everything. Life is good.

So, that should be it on the health updates for now. I’m going to make an appointment with a neuro-oncologist at OHSU in the next couple of weeks, so hopefully he will concur with Dr. Liau in the being able to wait until after Maui to start any form of treatment. Please pray that this tumor remains stable, or better yet, SHRINKS!! I love you all. Thank you so much for your continued love and prayers….