Regular Updates

For those of you who are looking for regular updates on Charysse Hesse's brain tumor journey, we have moved them to a private Facebook page. You are welcome to request access, but we are only granting access to those who have a direct connection to her or the family. Thanks for your prayers and support. … [Continue Reading...]

Recycling our health

An article recently came out about how researchers from a 'green' chemistry center have found a way to recover a chemical called polyvinyl-alcohol (PVA).  It is a compound that is used in the television industry and is a key element of television sets with liquid crystal display (LCD) technology.  These green conscious scientists are worried about the heavy burden of having to manage all of the potential waste of thrown out television sets by … [Continue Reading...]

Day 2

its been a relatively quiet day today, as I'm sure you've noticed by the lack of updates. Here's a quick update: Charysse was moved out of ICU and into her own room tonight around 5pm PT. She's reporting that she's had no visual effects from the surgery. That's a miracle! She's already asking if she can go home. At this point, she'll have to wait until Sunday. Finally, she's adamently against pictures being posted of her, so you'll … [Continue Reading...]

I’ve been thinking…

I love to write, but I don't love to write everyday on a blog about random thoughts, daily happenings, etc.  So this site seems to be severely neglected, but my research about these tumors and ways to treat them is quite the contrary.  I am often looking for new news and information that I can arm myself with to fight this tumor. Yesterday a news article came out about how brain tumor patients can starve their tumor.  I love these news … [Continue Reading...]

To God Be the Glory!

I will mention first, because I’m sure that is why most of you are here, that God has once again performed the miraculous!  My tumor has decreased in size and is showing signs of becoming less aggressive in a couple of locations since the last scan in December.  This is only the hand of God!  I am truly humbled by His grace, realizing where I was exactly a year ago right now, wondering what life would be, if any, a year later after the grim news they handed me after my fourth brain surgery.  Yes, Jesus loves me!

But, I have to tell you that this isn’t what has me smiling so much, lately.  It’s been a very turbulent year for me.  I’ve blogged about that a bit.  The area that this tumor has now moved into is responsible for a lot of critical functions, which is why they can’t remove all of it.  One thing that I have really struggled with that is extremely uncharacteristic of me, is my motivation level.  It doesn’t help that I don’t have a job, so I’m not jumping out of bed every morning running off to a structured day.  It hit me not long ago as I was thinking about the person that I’ve become over this past year and how I can change the things that I don’t like about that person, that my Radiation Oncologist and I had a conversation about what kind of side effects I would be dealing with as a result of the very large radiation bed in my brain that he hit for 6 weeks last year.  “Charysse, your ‘get up and go is going to be gone’.”  Wow, he wasn’t kidding.  Before I remembered that, we were thinking that maybe I was having depression issues as a result of being on 4 seizure medications.  I just wasn’t me and I didn’t have the energy or will power to want to change that.

Until one day…

God reminded me that I was trying to find my “wholeness” in all the wrong things.  I know why He’s given me this trial.  So much like Paul, I think He’s given it to me to keep me humble.  If I’m feeling well, I easily get wrapped up in my own plans and in my own dreams and ambitions and suddenly the world around me gets blurry.  But I’m to a place, now, where my health has been impacted so much by this cancer that I’ll probably never get back to the whole person that I once was.  I think I expected to breeze through this last surgery and the ensuing radiation and then get back to the person I was prior to surgery.  C’mon, Charysse.  Four brain surgeries?  Do you see the dropping jaws of the poor MRI techs that see your scans for the first time?

A few days ago, I came across this scripture:

“For this reason I bow my knees before the Father, from whom every family in heaven and on earth derives its name, that He would grant you, according to the riches of His glory, to be strengthened with power through His Spirit in the inner man, so that Christ may dwell in your hearts through faith ; and that you, being rooted and grounded in love, may be able to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ which surpasses knowledge, that you may be filled up to all the fullness of God. Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen” Ephesians 3:14-21

It was such a good reminder for me that my fullness, wholeness and ultimate contentment will be found only in God alone.  This trial is so hard, but friends, I love this trial.  God is always so faithful to steer me back on the path, which ultimately leads to blessings that seem so undeserved.  He is able to do far more abundantly beyond all that we ask or think….and He did!  But more importantly, He reminded me that this trial isn’t about me.  It’s about a lot of you, and probably a lot of people I’ll never meet.  There is so much peace and joy in that, and I’m so thankful for his gentle reminder of that.

to God Be the glory!

Reflections..

The holidays have come and gone and we’re pushing into January!  I’m so glad!  It’s been a great past couple of months, but it’s been an emotional time.  I’ve been doing a lot of reflecting on where we were a year ago at this time and with that has come so many mixed emotions; swinging from gratefulness to sadness, from fear to joy, pretty much all over the place!  We’re coming up to the date of when we flew down to UCLA and found out that I would be having surgery #4.  Because the main health “events” occurred back in the Fall, already, at this time last year, the holidays last year were really overshadowed by everything going on with my health and preparing for surgery, that I really feel like the kids missed out on a lot of things because of it.  It’s not like I didn’t do a lot of things with them, but my heart, mind and soul were all elsewhere so much of the time.  They were aching in constant fear of the unknown that was about to transpire a short amount of time later.  It consumed me.  I allowed the Enemy to win, and it makes me sick when I think back at my behavior last year at this time.  Just. sick.

This year, I wanted to make sure that I was one fully present parent!  I was going to be present in everything;  class parties, class mom, field trips, Christmas shopping while driving ALONE.  I wanted to sit on the couch with one kid on each side of me and watch Christmas movies and eat way too many Christmas cookies, everything my crappy attitude took away last year!  I asked the boys what they wanted to do, and we did maybe about ten percent of what they came up with (the other 90 was pretty much ridiculous).  They really just wanted to work with daddy a lot of the time at the dairy on the break, so they spent a good deal of time doing that, which was great for me!  Kid free shopping (aka DFS). Usually by the night of Christmas, I am ready to take down all of the Christmas decorations and put everything away because I can’t wait for everything to be back in it’s rightful place.  This year, though, we kept it up for a few days longer.  We watched Christmas movies for a few more days, and daddy came home with Christmas presents a couple more times.  It was such a sweet time with my boys.  I cherished every moment of their break.  I drank it all in because last year, I allowed my horrid attitude to make me take it all for granted, and I am one of the last people I know that should be taking even one tiny thing for granted when it comes to time with these precious boys God has blessed me with.

I did sneak in a MRI at the beginning of December, as we’re now doing those every 8 weeks, rather than every 3 months.  UCLA said that the scan was stable compared to the prior.  Praise the Lord!  The local radiologist wasn’t so optimistic about one area in the resection cavity not possibly becoming new tumor.  I mention this, not as new news, but as a prayer request before this next scan, that this spot will clear up and go away!  it has been there on the past three scans and keeps getting a little bigger and brighter in contrast.  It could be scar tissue or it could be tumor.  We don’t know until we just wait and watch what it does.  The rest of the areas of tumor all remained stable, though, so I am so blessed for that!

I will have another scan in the beginning of February.  I am currently weaning off of some seizure medications, which is absolutely fantastic!  I’m down from four to just Keppra and Topamax.  My neurologist is wanting me to add in another, which is sitting on my counter.  We’re having a stare down.  Weight gain is a main side effect, so I’m not too thrilled about that, but I must say it’s better than a grand mal seizure!  I haven’t had one of those since October of 2010, which is just absolutely amazing, considering I was having at least one every couple of months.  I have to say, the best part of my life, maybe even better than feeling well, is being able to drive!!!  It’s something that most of us take for granted, just to be able to jump into our car and run out and go somewhere.  A lot of people can’t do that!  I wasn’t able to do that for SO many months at a time, multiple times.  I am now the cheesy mom who is driving up the driveway into the school parking lot with sparkling teeth waving at her children because she’s so excited to be there picking them up.

Yep, that’s me!  I cannot be more proud and more humbled at the same time!

God is so good.

 

Signed, sealed and delivered 2 times. UCLA finally chimes in…

Half of my cancer battle is fighting the cancer.  The other half, it seems, is getting my scans down to UCLA for them to review and tell me their recommendations!

I recently had my 3 month follow up scan on October 6th.  We found out the results from the local hospital only a couple of days later, but as mentioned in prior posts, we always wait to share any news until we hear from UCLA.  They are our “final answer” people, so when we hear from them, then we’ll share with family, friends, etc.  My scan was delivered to UCLA on a Tuesday, exactly five days after I had it done here in Oregon.  Perfect.  They would be able to review it at tumor board on Wednesday.  I would have my scan, a local radiology report and UCLA’s opinion all within a week.  BAM!  I finally had this baby down to a science, as I should after 8 years!  The great thing was that, yes, it was delivered.  The not so great thing was that nobody had any clue *where* it was delivered.  I’m not quite sure what I was thinking allowing the shipping lady to choose my method of shipping, which was Priority Mail, but nev-uh again.  The second round went to FedEx and of course it arrived by 10:30 Tuesday morning.

Drumroll please…..my tumor continues to shrink!!!  I was able to quickly talk to Dr.Liau the other day as she was walking out the door for surgery.  She said the part that is getting smaller is shrinking away from critical areas, which is great news!  My tumor that is left is around areas of the brain stem, which controls most vital functions in the body.  Because it’s shrinking away, she said that if/when there is more growth, that another surgery is an option and she might be able to get more of that tumor out.  The idea of surgery #5 is just overwhelming at this point, but probably because the numerous complications of #4 are still just a bit too fresh for all of us.  She also said, though, that she’ll never be able to get all of my tumor out.  There is more tumor, not attached to this main tumor, that is into brain that she just can’t touch.

She was really surprised to find out that I haven’t been doing any treatment since radiation.  They made it so clear before and after surgery that radiation was only going to possibly slow or stunt the growth of this tumor, but not shrink it.  NOT SHRINK IT!  I’m pretty sure I asked her that question and threw her answer back at her at least ten times as my reasoning for not wanting to pull out the radiation card, yet, when they wanted me to do it back in 2008.  Why would I do it if it won’t get rid of it?  Radiation is one of the only etiologies that has been linked to these brain tumors.  At this point, she thinks it’s best to watch and wait, getting a scan every 6-8 weeks.  Dr. Cloughesy, my neuro-oncologist at UCLA wants me to be on a chemo called BCNU, not being comfortable with me having a high grade brain tumor hanging out in my noggin’ that can explode at any time not being on treatment.  I think I’m doped up enough on seizure drugs and will save the chemo for ‘as needed’.

So, what have I been doing?  I have an entire army of people bathing me in prayer on a daily basis!  Really.  This is so clearly God’s hand controlling everything.  It’s medically not in their realm.  They never see cases like this, they say!  I have been hearing this out of their mouths for years, now.

How can this not be God’s hand?

I think so, too.

So blessed.

 

 

More Fingerprints

One thing that is so nice about having cancer during this day and age is the internet.  You can find easily find information, valuable resources and network with other people that relate with what you are going through.  I love (and hate) reading people’s blogs that are dealing with my same diagnosis.  It can be so inspiring, but at the same time so devastating, especially when the ending doesn’t turn out how anybody would have wanted it to.  That’s why it’s especially frustrating when there are people like me who have a blog and don’t keep it updated!  I’m alive 8 years later post diagnosis!  My story is so inspiring, because doctors say I have beaten the odds!  What is wrong with me?  People that don’t know me and how I’m doing probably come back to my blog for an update and see that I haven’t written on it for almost six months.  If it was I looking for the update, I would want to hunt that person down to see if he/she was still alive.  How did radiation go?  What did UCLA say?  Do you know I’m waiting on pins and needles to see how you’re doing, because it gives me hope? (all things I’ve thought while following others’ journeys).

Point taken.

Well, UCLA had some amazing news for me about my July scan!  My surgery in February had split the one very large tumor into 3 very small tumors that all lie against different parts of the brainstem.  She got as close as she could to those different areas without touching the brainstem, which is very impressive, as well as very disturbing to all of my other doctors who look at my scans.  Anyways, one of the tumors had responded to the radiation therapy and is smaller in size!  This is totally God’s hand because they weren’t expecting for the tumors to ever shrink in size because of the radiation.  They were just hoping that the tumors would stop growing and remain stable.  Also, when brain tumors do respond to radiation, it is uncommon for it to show up on a scan until at least 3-6 months down the road.

The summer flew by, of course.  We were able to get away for a week camping with the boys in June in Hells Canyon.  It was really good for us to spend some time away from life, as a family.  The boys, especially Trent, were really feeling the impact of me going to the doctor and the hospital everyday for 6 weeks.  He’s so easygoing, so he just rolled with it, but I could see the emotional impact.  He’s young, but he could sense something was off when he had to go to grandma’s house everyday for so long.  One thing I’ve always been thankful for with this cancer journey is that it started when my kids were young enough to not know life any other way.  Mommy has always been sick and has always had to go to the doctor/hospital frequently.  Tyler was one when I was diagnosed.  Trent was one when my tumor recurred.

This past year has by far been the most straining and stressful for our entire family.  Being sick before the surgery and into the beginning of summer was a bit (too) much for everybody.  What’s that saying “Happy mom/wife, happy home”?  Indeed.  It was a really dark time, but God made His purpose known to me.  I didn’t like it, but He was gracious enough to show me why He was allowing me to go through it, which was comforting enough to keep me going.

We learned in July why I was feeling so ill through much of the Spring into Summer and were able to correct that (medication).  Once we figured that out, I felt like me, again!  I’m SO very thankful for that feeling!!  I haven’t felt like myself for about a year, now, since the domino of one piece of news after another last August into finally getting my meds adjusted recently.  I am on rather large doses of not one, not two, but FOUR seizure medications!!  Now you have to understand that almost all seizure medications have drowsiness and depression listed as the first 2 side effects, so finding the right combination of meds at the right doses (I was toxic on one) where I won’t have seizures, but I still feel like ME has been a major accomplishment.  This leads me to another amazing thing God has done in my life.  I haven’t had a grand mal seizure since I went into status epilepticus last October!  I have simple partial seizures every now and then, but I’ve never gone this long without having a grand mal in the past 8 years since diagnosis.  Except for those of you who have lost the privilege of driving, I can’t even tell you how nice it is to be able to go somewhere whenever I want to, to pick up or drop off my kids at school or to even just run to the store without having to call somebody and ask for a ride.  I have even gotten to the point where I can drive without fear, which is really amazing.  When I drive now, I don’t feel a rising panic when I see a flash of light, thinking that it’s my seizure aura starting and that I need to pull over right away and call somebody.

God has blessed me abundantly this summer, and I’m humbled again as I reflect upon His fingerprints over the past year.  I love doing that.  I love seeing where He was ahead of me when it felt like He wasn’t there.

I don’t know what you’re going through, but if it seems like God isn’t there right now, look back over the past however long you need to and look for His fingerprints.  See where He worked out situations that only He could have orchestrated, or ways that He protected, provided and proved Himself faithful.  I promise you’ll find them.

I feel like this post is just a Me, Me, Me, but there are so many great things that God has done for me, lately, and I wanted to fill you in on them.  It has taken me so long to update my blog that it’s already time for my 3 month scan!  It will probably be the end of this or the beginning of next week.  As always, thank you for your hugs, your faithful prayers, your cards, your continual love.  We are continually grateful for each and every one of you!

 

Another roller coaster ride

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!

Test results and the plan..

We got home yesterday from our trip to UCLA.  I can’t even begin to explain to you how thrilled I am to be done with that place for awhile.  I’m so ready for life to just settle down and for us to find some sort of normal, whatever that may look like.  I don’t like that when Trent greets me in the morning, the first thing he asks me is what doctor am I going to that day.  My kids are such troopers through all of this.  I’m so thankful that I was diagnosed when Tyler was only one.  This is all he’s ever known and it’s obviously all Trent has ever known, as well.  It has never been as intense as it’s been over the past 6 months, and that has definitely taken an obvious emotional toll on our family, but we’re hoping that things will finally quiet down and we can just focus on being a family and enjoying our time together, rather than upcoming surgeries and trips to doctors, etc.

This past month, since I’ve been home from surgery has been extremely rough for me.  What I thought would only be a couple of weeks of just taking it easy and healing from surgery turned into a month of not feeling well at all and not knowing why for most of it.  After going to a few doctors, Dr. Liau suggested that I go see an ENT to check out my sinuses.  We figured out that I picked up a sinus infection, probably before surgery already, and didn’t know it.  The surgery added fuel to the fire and I now have a very large infection that we’re having a hard time clearing up.  In hindsight, there were definitely early symptoms, but when you’re recovering from brain surgery in the same area as the infection, it’s hard to know what is causing the symptoms.  Unfortunately, I waited too long to get it treated and now have a mess going on in my head.  I had a CT of my sinuses done and if the infection doesn’t clear out in a couple of weeks, then I will have to have surgery to clear out the infection because I’m high risk.  The infection is sitting right next to my surgery site.  We think the infection may be what is causing all of this numbness that is still on the right side of my face.  The ENT thinks the infection is pushing on the maxillary nerve, so it’s probably not a permanent thing.  Love that!  So needless to say, that has been beyond frustrating to not be feeling well at all for so long, and it’s not because of the surgery!  I’m feeling great with all things surgery related!!  I’m on a heavy antibiotic and praying that it clears this thing up because I’m good on the surgery thing for now, thanks.

I finally received pathology news this week from my surgeon.  The tumor has indeed upgraded to a high grade tumor.  It’s not a grade 4, but a grade 3.  The official diagnosis is an Anaplastic Oligoastrocytoma.  I can’t say that I’m too disappointed that it has upgraded.  I fully expected that it had, given the rapid amount of growth in such a short period of time.  The growth was so extreme that it seemed almost impossible that the tumor wouldn’t be a grade 4.  A grade 4 is a Glioblastoma Multiforme, one of the most devastating diagnosis in the world of cancer.  Very fast, very aggressive and very lethal.  I am so inredibly thankful that one of those is not hanging out in my noggin.  I am now only one grade below that, though, so the harder part of the battle has now begun.  There are two pieces of tumor left that are too close to eloquent parts of the brain for Dr. Liau to have been able to remove them safely.  One is close to the Thalamus, which is where she left it during the last surgery, and the other is next to the Basal Ganglia.

We were in California for only 24 hours on this trip.  We wanted to get in and get out, and so we did!  We first met with Dr. Selch.  He is the radiation oncologist at UCLA.  He explained what would need to get radiated and what the side effects might be.  Because the area where the tumor was/is, is quite large now, a very large portion of the right side of my brain will be irradiated.  That is a bummer.  The guaranteed side effect will be that I will lose my hair at the site where the beams go into my head.  Will the hair grow back?  There is a 50/50 chance that it will.  Yeesh.  The other most common side effect during treatment is fatigue, but not everybody experiences that.  I’m still working with Greg, my naturopath, doing naturopathic treatments immediately when I got home from surgery.  There are many ways to offset this fatigue naturally, diet being a big one, so we have a plan.  The long term side effects of radiating this part of the brain are short term memory loss, which I’m already accused of  (: It can also have an effect on emotions.  I’m not sure in which way, but I guess we’ll find out!  They are irradiating the hippocampus, the limbic system, so many crucial structures to my everyday functioning, so there will most likely be deficits that may be a little frustrating down the road.  It’s one of the big bummers of brain cancer.  You’re messing with a part of the body that controls every aspect of your entire body.  Everything they do in there is affecting something else in another area of my body.  These deficits from radiation usually don’t rear their ugly head until several months or maybe even years down the road.  Thankfully the brain is extremely neuroplastic and there are many software programs that have been developed to help with regaining short term memory, etc.  Where there’s a will, there’s a way.  This girl has will.

They did some genetic testing on my tumor, as well.  Based on certain genetic mutations, they can predict how well a tumor will respond to radiation or chemotherapy.  It’s not an exact science because based on the testing from my surgery three years ago, my tumor should have responded well to chemo, but didn’t.  The test on my tumor showed that I have the IDH1 mutation.  This genetic mutation has shown to be associated with a better prognosis and has been shown to have a better response to radiation.  We pray that is true.

We also met with Dr. Cloughesy, a neuro-oncologist.  He is amazing.  He is so warm and personable, much like Dr. Liau.  I feel like I’m in extremely good hands with him overseeing my local treatment.  Based upon the pathology of my tumor, he has decided that chemo is not a good option for me right now.  He doesn’t think that my tumor will respond to it, so we’ll save that as an option for down the road.  We already tried Temodar, which is just a pill and a mild chemo, but is the first choice for brain cancer, no matter the grade.  It did not work for me, so the next chemo that would be coming my way, if necessary, will be the IV heavier stuff.  I’m so thankful that time is not right now.  I’m ready for a break from heavy stuff! (:

So that is hopefully the end of many months of chaos.  I’ll probably start radiation the first week of April.  It will go for 6 1/2 weeks everyday.  We are so incredibly thankful for all of the prayers and support from all of you during this time.  We have felt it all throughout each day.  I can easily say that these past six months have been the most trying months of my life.  It has just been one thing after another for such a long period of time.  There have been so many blessings through it, but geez.  Enough, already!

Thank you, thank you for your prayers, your cards, your phone calls, for all the different ways that you have loved on us and supported us through this time.  We feel so blessed to be loved by so many!

No rest for the weary!

I received an email from Dr. Liau and there was not any additional pathology available this week from my surgery, so they will bring my case up next Wednesday at tumor board to see if there is more information.  This is what I do know, though.  At this point, we will be flying back down to UCLA in a couple of weeks to meet with a couple of new doctors.  Up until this point, my only doctor at UCLA has been Dr. Liau, who is my surgeon.  I have not done radiation, yet, for said reasons, but they are wanting that to be the next step no matter the final pathology.  Because radiation is everyday for six weeks, I will obviously be doing that here locally in Salem.  I will fly down to meet with Dr. Michael Selch, who is a radiation oncologist that specializes in brain tumors.  He will then be able to coordinate and oversee my local treatment here in Salem.  When radiating the body, there are multiple variables that are involved in calculating how much of the tissue to radiate, how many rads to throw at it, etc.  I want to make sure we’re all on the same page here before I do this!

I will also meet with Dr. Timothy Cloughesy.  He is a neuro-oncologist, and an amazing one from what I have heard and read over the years.  He will work with my local oncologist.  I found out that the genetic testing on my tumor that I had mentioned in my previous blog is only being done to decide now on the chemotherapy that will be used later, when/if it is needed.  There are several different chemothefrapies out there, now.  It’s not fool proof by any stretch, but they are finding ways to test cancer cells ahead of time and anticipate which drug they will most likely respond or not respond to.  This limits the pain and misery of the common cancer shotgun approach, which is great!

So at this point, it’s looking like radiation won’t get going until the beginning of April, which is fine with me!  They originally wanted to start in a couple of weeks.  The thought of them radiating this noggin right now just makes it hurt all the more!

Another one down…

I know I wasn’t very diligent about keeping anybody updated while I was down south.  It was killing me, but the biggest reason was that my pain factor is quite a bit more significant with this surgery than it has been with any of the past surgeries.  I was able to jabber a little bit with Facebook, but much more than that felt like more effort than I was capable of.  These surgeries have been getting so easy to bounce back from that I’m trying really hard to not get really frustrated by this limitation.

 

But, wow, what a whiner!  GOD WAS SO FAITHFUL THIS WEEK!  So incredibly faithful.  I ask myself this all the time:  why do I ever doubt?  My worries and fears coming into this surgery that have all been expressed in previous blogs were all covered.  They were ALL covered!  Dr. Liau wasn’t able to remove all of the tumor, but we knew she wouldn’t going into this, so I can’t say this was ever a fear.  My vision!!  There was rather significant swelling in my brain when she did surgery, so there is probably a similar amount of swelling now, which is always common after any surgeries.  This swelling and the tumor was pressing on my optic nerves creating several visual symptoms that have been going on for a couple of years now.  Two of those symptoms have already resolved!  At this point, the vision that she said would most certainly be damaged does not appear to be any different.  It’s not something that might not show up down the road when there is healing and scar tissue buildup, but right now I’m really trying to just hold on and claim God’s protection of that vision during surgery, that He spared it.  It may seem silly, because in the grand scheme of things, I am dealing with brain cancer, but the idea of losing so much vision in one eye was bothering more than anything coming into another surgery.  It has some significant long term implications if it limits that vision.  I consider this a miracle!

The other amazing answer to prayer is that this tumor appears to be mostly low grade at this point.  With the sudden shock we received recently that the tumor we thought had only subtly grown over the last three years had really tripled in size and now showed hot spots, it only seemed inevitable that news would come that it was aggressive.  We’re still waiting for final pathology, which should come this week, but the fact that she had so many tissue samples tested during surgery that were consistent with low grade is very encouraging.

I can never just pass over lightly God’s protection through these surgeries.  It’s brain surgery.  It was a very long surgery and I am home and feeling pretty well, already.  I was doing pre-op appointments only a short week ago, although it seems much longer than that!

Now that I’m home, I’m enjoying reflecting on this past week and seeing God’s hand in the events of the week.  Oh, how I wish that everybody could go through experiences in life where it puts them in a place that allows them to reflect and relish in God’s goodness.  Not that I want you to go through brain surgery, but it’s a beautiful thing to be in a position where you are constantly looking at how God is working out details in your life.  I may only be in my 34th year of life, but I feel like He has allowed me to live  so much more life than that, already, and I have to say I’m so thankful for it.  I’m thankful for the depth of maturity that I’ve been able/forced to acquire because of it.

Our usual routine on our way down to UCLA is to visit Marvin’s family in northern California.  It’s a great way to see everybody and the by far our biggest blessing has always been the opportunity to spend a little bit of time with his Grandpa and Grandma Visser, who are Marvin’s mom’s parents.  I was originally scheduled to have surgery on February 17th.  We all came down with the flu, so the surgery was postponed a week.  If the surgery would have stayed on schedule, we would have been able to see Grandpa one last time.  By the time we had traveled down that way, he had what we thought was a really bad infection and decided not to stop in for fear of me getting sick.  Only a few days later, Grandpa passed away.  It was sad that we weren’t able to see him one last time, but since we were down in California, Marvin was able to go to the funeral, which was such a blessing for him and for his family!  So not only was he able to honor his grandpa by being there for his funeral, but he was also able to see his entire extended family because his crazy huge family had all flown in for it.  I had just gotten out of surgery 40 hours earlier, so I opted to stay behind and rest (:  The timing couldn’t have been better.  Not that I wanted to postpone the surgery one second longer than it had to be, but I have to say that I am thrilled that it was because of this.  Marvin’s uncle is a pastor and performed the service.  He spoke about God’s fingerprints in grandpa’s life, and that is exactly how I would describe this.  He had it all worked out.  There was a reason we got sick.  I’m content with this being it!

Dr. Liau is supposed to get back to me in the next day or two with the pathology of the whole tumor and the recommendations of the tumor board for what I should do next.  At this point, they seem to be really pushing radiation.  They will be doing some genetic testing on my tumor, though.  They are able to tell whether my tumor will be more sensitive to chemo or radiation depending on the results of this testing.  I will post the updated information of what life will look like over the next few months when I get it.

Meanwhile, I just want to say thank you so incredibly much for your constant outpouring of support to us!  We have been overwhelmed with love and it is really carrying us through some trying times.  This surgery has just felt different in so many ways.  It has been a lot harder and so we are so thankful for all of you that have been constantly encouraging us with cards, notes, emails, phone calls….everything!  Thank you for loving on my family.  I’ve always said that it has to be so much easier being the patient than the family member.  My husband is incredible!  My kids are troopers!  Thank you for taking care of them, as well.

I’ll be back with deets soon.  Really, this time. (-;

Day 2

its been a relatively quiet day today, as I’m sure you’ve noticed by the lack of updates. Here’s a quick update:

  • Charysse was moved out of ICU and into her own room tonight around 5pm PT.
  • She’s reporting that she’s had no visual effects from the surgery. That’s a miracle!
  • She’s already asking if she can go home. At this point, she’ll have to wait until Sunday.
  • Finally, she’s adamently against pictures being posted of her, so you’ll have to settle for a written description: imagine her with one of those stellar hospital gowns, her head wrapped in gauze, add a dose of wit and some pain from the surgery, and that’s what we see

Tomorrow, I head back to be with my family so I’ll be passing the updates back to Charysse, who will be ready to run a marathon, I’m sure.

Goodnight from UCLA
–Kyle

icu

ICU

We finally got to go into the ICU to see Charysse.

It didn’t take long for her snarky side to come out. About a minute after we got there, someone said something and she corrected their grammar. Attagirl.

She’s in a lot of pain—who wouldn’t be after getting a craniotomy—but they are working to get ahead of it.

I didn’t get to stay long as they only allow two visitors in the room with her at a time: Marvin and mom deserve that privilege.

Tonight, we will rest and return to be with our girl tomorrow. We are so proud of who she is, her will to fight, to beat this thing, and for her brave spirit to undergo a FOURTH craniotomy. I know you all are proud too.

We can’t say thank you enough. Please don’t let the repetition weaken the sincerity.

Goodnight from UCLA.

—Kyle (& mom, dad and Marvin)

PS. One of Charysse’s greatest sources of encouragement are your comments. She reads every single one of them. I invite you to be generous with them. They mean a lot to her and us.