KEEP BELIEVING

Wow. May 17th was the last time I wrote. Really??  Kinda hard to believe considering this was such a staple in my life a year ago.


So many people from so many different areas of my life read this blog – Brian’s family, the boyfriend, my family, my friends, Brian’s coworkers, his friends, etc. Moving on with life and trying to be sensitive to so many different people’s feelings, grief and concerns makes finding a topic to write about difficult at best.

I will tell you some things that have been going on in the last two months.

Grant’s tube surgery went fine, but he currently has an ear infection. It is draining out the ear which is what the tube is designed to do, but it is keeping us out of the pool during this very hot week. I talked with Grant’s teacher at the end of school. She said he finally started to come out of his shell and talk more openly in class including talking about Brian. Grant does not AT ALL like to be singled out for being different. Having a daddy that is dead makes him very different. She said that many of the children asked questions about his daddy in heaven and he told them he died from surgery. She interjected that it was cancer and he said surgery and cancer were the same thing. This makes me so sad – no wonder he was so afraid of the surgery.

Grant is like a different kid since school has been out. Admittedly, I have not been encouraging much time spent on academic or learning activities like flashcards and reading. We have been at the pool, watching TV, playing Wii and at baseball. He really just hates school. I am having him evaluated soon to determine if he has some sort of attention issue or other factor contributing to his dislike of all things school related. I just want to help him and learn how to better keep my cool given his attitude.

The boyfriend is no longer my boyfriend. I have no doubt that someday he will make someone very happy, but we are just wrong for each other in the way we handle, approach and respond to life, adversity, and relationships. Not to say that either of us is wrong or right, but just different and for the long term – incompatible and probably a recipe for resentment. That’s all I have to say about that.

Gavin has declared he is skipping high school. Upon further investigation into this declaration, it stems from a discussion we had in recent weeks in which I told him that in high school you will take showers in front of other guys after P.E. I told him this in an effort to get him to stop freaking out so much about his brother or a friend that spends the night seeing his privates for a brief second. It completely backfired and now he is petrified of high school. I told him by the time that comes around he won’t care anymore and he will WANT to take a shower because he will like girls again by then and girls like boys that smell good.

I defrosted my deep freeze today for the first time in 2-1/2 years. It was all frosted up, but it still worked. It was my sister who explained it could break if I didn’t get the ice off the coils that finally led me to defrost it. It wasn’t even that much of a pain in the butt. Only mildly. I have to put the seafood and chicken back in it now. My hands got cold after handling the beef.

That's it for now!

Grant gets his tubes for his consistently clogged ears on Wednesday.

Saturday morning, after we went to the hospital for the pre-surgery lab draw (that was actually supposed to happen on May 5th, but I completely spaced it out due to constant pre-occupations in my head), Grant asked me this:

Grant: Mom, will my doctor have to cut my ears?
Me: Yes, he makes a tiny hole in the ear and places the tube in the hole.
Grant: Will I bleed?
Me: I'm not sure. It goes so quickly. The whole surgery only lasts about 15 minutes.
Grant: How will I be put to sleep?
Me: I'm not sure. They may put a mask over your mouth and you breath in this special stuff you can't see, called gas, to make you sleep. I don't know if that is what they will use or not, though.
Grant: What if I don't wake up?
Me: You will. It happens really quickly and we will come home a little bit after the surgery.
Grant: What if I die?
Me: Oh, buddy. You aren't gonna die from this. It is really quick and easy.
Grant: What if my doctor kills me?
Me: He does this all the time. He just did some of these surgeries this week. He isn't going to mess up and kill you.
Grant: What if he decides to kill me?
Me: Ummmmm. What?!?!
Grant: What if my doctor decides to kill me?
Me: He CAN'T and he WON'T. It's against the law. Why would you think your doctor would kill you?
Grant: Mom, you know Michael Jackson's doctors killed him?
Me: What? How did you know that? Where did you hear that? I'm not sure if that's true or not.
Grant: No, Mom, it IS true. Dominic told me and said his doctors were arrested yesterday for killing him.
Me: OK. Well, Michael Jackson was a very weird man who did very strange things to his body. He asked doctors to help him do these things. He found some doctors who were willing to do them, but they should have known better. They knew those things would hurt him and helped him do them anyway just because he is famous. Your doctor doesn't want anyone to do anything to themselves that would hurt them no matter how famous they are. You don't have to worry.

I think he is more at ease with the thought of the surgery now, but we will see how apprehensive he is on Wednesday. I think I may tell his doc to give him a word of encouragement just before he goes under.

KEEP BELIEVING

A few weeks ago, during a conference with Grant’s teacher, I learned that Grant had failed a hearing screening at school. Not waiting for the official notification from those that performed the hearing screening, I took him to the pediatrician and discovered he had an ear infection, which was a likely cause for the hearing loss. After two weeks of antibiotics and an ear re-check, the pediatrician decided the infection looked relatively cleared up, but recommended a hearing screening again.




On Tuesday I received a call from pre-registration to get Grant registered for his appointment the next day. This was the first I heard of the appointment, so I had no time to think about the appointment and its location, which was probably for the best. On Wednesday, we headed out to Grant’s audiology screening.



At OSF-St. Francis Medical Center.



As we walked the corridors of the hospital getting to the appropriate elevator, it dawned on me this was the first time I had entered OSF-St. Francis since March 17, 2009. I scanned my memory quickly, thinking SURELY there was a time or reason when I had been there in the last 11 months. Nope. First time since March 17, 2009.



And since THAT wasn’t enough, the audiology group performing the test was on the 6th floor of the Illinois Neurological Institute just one floor away from where Brian had his last surgery and hospital stay in which he left the hospital ALIVE.



And since THAT wasn’t enough, Grant had to use the bathroom just outside the secured entrance to the Children’s Hospital wing where Gavin spent 3 days and nights just one day after Brian’s last hospital stay in which he left ALIVE.



And since THAT wasn’t enough, as we sat in the waiting room listening for Grant’s name to be called, I glanced out the window and peered directly into the building across the street – the one where Brian died. Not just the building, but exactly the ROOM in which Brian breathed his last breath. Birds-eye view.



And because I was completely caught up in the flooding of memories, I was giving a commentary of the events that unfolded on all three of those events to my audience.



Which was my 6-year-old son.



Yeah, really smart.



I even pointed out the room to Grant. He cleverly acknowledged that I had just minutes ago as we were walking the hallways audibly said, “I haven’t been here since Daddy died. He died in his hospital” and that building was across the street, so not part of this hospital.



I explained there is an underground tunnel system leading over to that building and it took us a long time to get there. He said he wanted to go see the tunnel system and walk through it. I said, no he didn’t and it took a long time and was confusing. He asked if Daddy walked over there.



Being a complete and total idiot, I kind of huffed and said, “No, sweetie, daddy was totally unconscious. he couldn’t walk at all.”

Then I looked down into his eyes.

And it was in THAT EXACT MOMENT that I realized what the hell I was doing and who my audience was. Holy Crap! I saw the look on his face as he tried to visualize the events of that day even though he was in St. Louis when it was all happening. I didn’t want him to visualize that in his tender little 6-year-old fatherless life.



So, I tried to smooth it over. “Daddy got to ride on one of those cool beds with wheels. We all had to walk but he got a ride. And sometimes it went pretty fast because there were kind of hills in the halls.”



“Mom, You shoulda hopped on and rode with Dad.”



“Yeah, I wish I would have thought of that. That would have been fun.”



We were called soon after that. He is still showing some signs of hearing loss in both ears. Minor and probably reversible. He also has pressure on his eardrums signaling he is either still recuperating from his ear infection or on the verge of another, which could be the cause. Regardless, it entails an additional trip to the pediatrician for another ear check and an additional hearing screening.



Anyway, on our way out of the hospital, Grant got to choose a snack at the gift shop or Spotted Cow ice cream. He chose the gift shop. He had been lobbying for gum earlier, so I assumed he would want gum and I was even willing to buy Hubba Bubba. Instead, he chose a Snickers. Grant rarely chooses anything chocolate so I was surprised at his choice and as I was paying he looked at me and said, “Mom, that was Dad’s favorite candy bar, wasn’t it?”



“It sure was, Buddy. He said it was the perfect candy bar because it had the caramel and the chocolate and the nougat AND the peanuts. You made a good choice.”



And it was in THAT EXACT MOMENT that I made some sense of the situation. Because I am ALWAYS trying to make sense of situations like these.



You see, as that flood-gate of memories opened and my mind raced with so many events I had lived and survived during the fall and winter of last year, as I glanced out that window peering into the room where I lay on Brian’s chest unknowing he was an hour from death, as I walked those halls audibly recapping the events of those months, I didn’t shed one tear. Not a single tear. I felt weird being at the hospital for a reason other than Brian’s cancer. I didn’t like sitting in the waiting room as I remembered so many times silently holding Brian’s hand knowing we were getting test results and any idle chatter just meant we were both nervous. Silence was best at those moments.  Yet even in the midst all that, I don’t even know that I felt particularly sad. Just strange.



I felt like I should be sad. I felt like I should cry, but there was no sadness for me.

I got nothing. Really, I have been feeling so uninspired to write lately.

I thought I would just give you a general update on our lives.

GAVIN:

Second grade is going okay for him. He isn't showing as much interest in reading as he needs to as this is really the last year they "learn to read." Next year, they "read to learn," so he needs to start picking up the pace on this. Getting the kids to read is a constant challenge. He is right at state requirements, but a little low for the class. Not the bottom, though, so he won't get any extra school help. Math is getting harder as they have started borrowing in subtraction. Gavin isn't great at subtraction - he always has to use the number line or his fingers. Brian's aunt, a dear, sweet, wonderful, lady who also happens to teach first grade, has offered to start coming over on Wednesdays to work with boys boys on school work a bit. I think this is a great idea to give them a fresh look at homework and to give me a break. And they really like Zach's grandma Deb.

Gavin is home sick today with a fever for the third time in about 7 weeks. He seems to get sicker these days than any of us. He still eats terribly, so I swear that his immune system is weakened. Sometimes he scares me because he always looks a bit peaked and gray to me.

Gavin is continuing counseling for a while. When I told him we were wrapping up our sessions because counseling is not supposed to be forever, he freaked out and started carrying stuffed animals around all the time and sleeping with Daddy's things again saying he can't stop because he is still sad. I explained it was okay to be sad and he will FOREVER be sad some, but he was okay. The counselor and I agreed that despite losing our insurance coverage and going to private pay, we will continue until it appears the decision comes more from Gavin. Also, the group where we attend counseling is introducing a support group for 8-12 year-old's who have experienced a significant loss. I think this will be great for Gavin.

GRANT:
First grade for Grant is going about the same as second is for Gavin. He doesn't love to read, but needs to do more of it. I have been very concerned about him academically, but have noticed in the last two weeks, he seems to be making great strides in his printing and some decent strides in his reading. His teacher informed me that is common after the first quarter. In the end, I did not do much academically with the boys all summer, so it is no wonder they would be a bit lost when school started again.

Grant is doing well with his grief. We all had a hard week the week of Brian's birthday. Halloween, the announced end of counseling, Brian's birthday all falling together took every one of us to a bit of a melt down stage. We all three had some crying episodes. And we were all there for each other. We all understand this need for each of us to express this in any way we can at often very random times. Grant is finished with his counseling, but he still sees the school counselor.

Grant is my protector. When he sees me crying, he sniffs, puffs up his chest, comes to me and immediately hugs me gently and firmly. After he does this for a while, he THEN asks me what is wrong. Do you have any idea how WISE and comforting that is?? To not have to explain why you are crying when you sometimes don't KNOW why you are crying anyway and to just have an unconditional loving pair of arms there to hold you and allow you to cry? I tell him he is never more like Jesus than when he is like that. Anyway, he usually waits til I calm down then gets me a tissue or asks if I need some water or writes me a note and brings it to me a few minutes later. He is so incredibly sweet inside that very rough outer surface. I love that boy.

ME:
I have been good. I struggle with creativity and motivation. I don't cook much anymore as I have stated in the past. I have been working out a lot trying to lose some of the 15+ pounds that I gained since 2008 that I had lost in 2006. I am making strides suddenly with that. I often forget to eat. Seriously, some days it is 2:00 and I realize I am starving because I have not eaten since yesterday at 2:00. I am trying to get better at eating at least little bits all day if not full meals.

I am leading a Bible Study now to my group of women from my Mom's group at church. I am very excited and we will have our first discussion on Thursday. Please pray for me. I have never led a Bible Study from beginning to end. It is called Wisdom for Mothers. It concentrates on your relationships in life starting with God, your spouse, your children and your service - IN THAT ORDER. I am super passionate about your relationships being prioritized IN THAT ORDER and especially a mother's relationship with her spouse. It seems we as moms often fall into the trap of putting our spouse on the back burner and focusing on our children.

I have been doing well in my grief. Not sure what the holidays will bring. I may attend a seminar this weekend put on by Hospice about tips on how to handle the holidays. As my wonderful dear wise counselor has stated, this year is my road map. I am figuring out what moments in time are difficult, what events or situations remind me of Brian, and what works for handling it all.

I have been doing a lot of reflecting on "what was I doing this time last year." My counselor says this is very normal. I have been a bit flooded with emotions around this time. It was last October that we found out the tumor had been growing despite the second chemo. It was this week last year where I had the worst, then best, then worst, then best week of my life ever.

It was the first week of November last year when we thought Brian was dying. He had excruciating headaches, loss of balance, little blackout spells and confusion. He had pressure in his ventricle and after a whirlwind 3-1/2 day stay in the hospital, he had a shunt installed and walked out of the hospital a new man who lived over 4 more months.

It was during this hospital stay that my mom took the boys to her house for the weekend because Gavin had a fever and we didn't want to risk his getting Brian sick while we were so unsure what was happening in the hospital - making this horrific decision to spend time apart not knowing how much time Brian had left. Brian got home from the hospital on Saturday afternoon. I picked up the boys on Sunday morning. Gavin was still so sick - going on 4 days now with almost no food or water intake. Then, at 2:00 am, I could no longer handle watching him moan and shiver with a 104 fever. I was not waiting for the 8:30 am office to open. I knew he needed more. We went to the ER and he was admitted a few hours later after he kept nothing down and his fever could not easily be controlled.

Little did I know when I left that hospital at 1:00 on Saturday, I would be back 19 hours later for another 3-1/2 day stay WITH MY SON and I would once again have to decide which family members to spend time with. You can't imagine how incredibly painful that is for a mom, a wife and a caregiver. Just thinking about it right now floods me with tears. My counselor says this is so normal. She likens it to a soldier's post traumatic stress disorder. At the time, you are in survival mode just doing exactly what you need to do to get through the day and take care of those that need to be taken care of. Then, you think back on it and can't believe you survived it. It haunts you.

Anyway, other than that, things are going well. Still building my road map. Still figuring out trigger points. Coming to terms with moving on, but with little guilt. Praying for guarding of my heart as I consider dating again. Trying to rekindle friendships and family relationships. Starting some new friendships. Beginning to think about what to get the boys for Christmas and what new traditions we can begin. Contemplating. Analyzing. Playing. Praying. Living.

KEEP BELIEVING

We had our appointment with the surgeon yesterday. He was pleased with how Brian looked and was speaking. We explained about Brian's vomiting episodes. He had two theories. One being that Brian could have something viral going on that manifested in his inner ear as can happen with sinus viruses causing some sort of vertigo issue. If this is the case, it should clear up on its own. His second theory was that the Keppra (anti seizure drug) Brian takes which recently switched from manufacturer to generic may be causing this. So we are going to start taking the non-generic formula again for the additional cost.

The CT scan Monday looked fine - the ventricles are not enlarged or smaller showing the shunt is working fine. In addition, the tumor has not grown. However, it is showing increased enhancement meaning the areas in question are still considerably in question and probably "hot."

We told him we were leaning to chemo instead of surgery at this point in time. He has no issue either way with our decision.

We are still having issues with the insurance approving the chemo for Brian's condition. Latest we heard was that it could be A MONTH before they have a decision. So, today I have to make that unpleasant phone call myself to implore on the insurance company's good nature to rush this as my husband has not had any treatment for his illness in 3 months and this is our last option. Tentatively, though, we have scheduled for Monday, January 12.

Today we received a phone call from Brian's employer who is offering the company voluntary separation packages. The package makes incredible sense for us if we think Brian is not going to survive for the next 6 months. If he survives the next 6 months, it becomes riskier. After 18 months, it becomes disastrous unless I am back to work at am employer with good medical benefits at that point in time. I did our budget yesterday assuming Brian would be on his short term disability until October and start long term reduced salary in November. With this, it is most likely that I will need to go back to work sometime this fall anyway to make ends meet. This is stressful given the current job market. The major employer in this town is trying to get its employee's to separate in order to avoid layoffs. There is little available right now. I have an engineering degree, but have always worked in accounting/finance. Accounting/finance has changed drastically in the last few years since I quit with the implementation of Sarbanes Oxley rules and more and more companies wanting CPA's. I am not going back to school to become a CPA. Also, I don't want to be at a new job if Brian is getting sicker. I want to be with him taking care of him and taking care of my boys. I want to give my boys stability and love and assurance - not day-care and mommy gone a lot, etc.

I am stressed. I knew this would be the year of making big decisions, but I didn't expect them all to come upon us so fast. I am a mess. Also, I wasn't going to say this because I don't want to do this with any attention on myself, but I am trying a 3 week fast. I am not doing a full fledged fast, but fasting from a few things in my life that I know I can go without. I am replacing them with prayers for Brian's healing and for our financial provision. So, when opportunities like this voluntary package come along, I don't know if it is God's way of saying "here is my provision for the next year" or if it Satan attacking our faith for Brian's recovery. Also, we have to make our decision on this by MONDAY.

Here is what I am stressed about:
Insurance issues with chemo next week (waiting another month is just not an option in my mind)
Making the phone calls for the insurance issues.
Decisions about chemo/surgery.
Making a decision about the separation package.
Going back to work/making ends meet.
Sticking to the fast for renewal spiritually.
Finding a new pediatrician for the boys.

Please pray for us.

KEEP BELIEVING

I feel like I have been here before - TIME AND TIME AGAIN. Brian had his oncologist appointment today and was supposed to start chemo. Well, it appears this chemotherapy regimen of Carboplatin and Avastin has not yet been approved by our insurance for Brian's diagnosis, so we have to get special approval. Approval for which we are still waiting. According to the oncologist office, they have checked a couple times with the insurance and are awaiting approval and were told today 5-10 days. Are you stinking kidding me??? This was scheduled Dec. 10 and this was the first we heard of an insurance issue. We could have been working this all last months. Now, we have to wait for Brian to get sicker while what? the insurance files a few papers and finally approves this because this is all we got left???? Can you tell I am fuming?

But more than the insurance approval issue is the lack of communication again. There was absolutely no reason for us to go into the office to find this out today - this is a phone call that should have been made to us before we left the house - "Hello? Mr. And Mrs. O'Neill? It appears your insurance still has not approved the chemotherapy Brian has scheduled for today. There is no reason for you to come in unless you are having another issue you would like to talk to the doctor about. Maybe you could call the insurance company yourselves to assist in our plight for approval. And let's go ahead and get you on the schedule for next week to make up for this. K?" Only that would be in LA LA LAND...

AND? We paid for the stinking office visit...

As it turns out, due to Brian's vomiting issues, he is currently undergoing a CT scan to see if perhaps the shunt he has is clogged or backed up causing him pressure issues.

Also? We have an appointment with the surgeon again tomorrow to discuss the surgery he mentioned. So, maybe this cancellation of chemotherapy today is God's way of telling us to think harder about the surgery.

It is very confusing and frustrating and I feel like we are right where we were mid-November. Not moving forward. Just waiting. And deciding. And struggling.

KEEP BELIEVING

I'm not going to post for a few days. Read a bit each day to tide you over. There is a lot of crap meaningful stuff here today.

We met with Dr. K, the surgeon, again today.

He stated how pleased he was at Brian’s condition and current status given where we were a little over a month ago prior to the shunt placement. He truly didn’t expect the shunt to provide Brian with as much relief as it did.

Next he stated that Brian’s MRI is definitely showing growth and it looks likely to be malignant tumor with increasing enhancement on the scan accompanying the growth. This is definitely concerning and does not bode well for Brian’s prognosis.

He stated that the prior surgery left an area of access, if you will, for entry into the tumor bed. A sort of a void then the tumor starts then there is healthy brain surrounding it. He stated he could get to some of the tumor relatively easily, but as he neared the edges, he would get to very sensitive and key areas such as Brian’s speech and motor functions, mainly his arm/hand. If he were to do a surgical resection, he would debulk the area he thought he could get with reasonable safety leaving a margin of tumor behind.

But not without risk. There is risk to Brian’s speech and motor functions even if he leaves a significant margin. About a 15% or so risk, if he were to give a number, to further damaging Brian’s abilities. The reason for this is that the brain has redundancy of functions. With each resection (removal of some brain) the redundancy is being eliminated. As is pretty apparent with Brian’s current condition, the redundancy of certain functions with Brian is eliminated at this point in time given his 3 prior resections.

So, the decision is this: Surgery or not to Surgery.

And it is the biggest decision we have had to make yet.

The case against surgery is that this does not treat the actual cancer. It just removes some of something that is very aggressive and growing despite our best efforts. The remaining cells will likely act as they are now - growing and progressing.

However, debulking the tumor would give us more time to be together until the tumor grows to a point where it compromises Brian’s life again.

However, debulking could cause Brian to have further problems than he has – his motor functions and his speech. Making it so that even if it did buy us more time, that time would lack in the quality we have now being able to communicate and have Brian mobile.

As we left it today, we are meeting with Brian’s oncologist tomorrow to discuss chemotherapy options. Any chemotherapy that we do would delay surgery due to the effects of chemo on the blood counts, etc. making surgery and its side effects more risky with bleeding and infection.

Dr. K did state that if we thought surgery was something we were considering at some point in time, then sooner than letter would be better for Brian. The tumor is large as it is. The larger it gets, the more risk involved. He stated that for many people the risk of surgery for a few additional months would not be worth it, but with a 5 and 7-year-old boy, a few months is a large portion of their lifetime.

We would not do any surgery until after the holidays regardless. Dr. K, being a father of 6, stated that we should enjoy our holidays and think about this for a while. We are meeting with him the first week of January.

From my standpoint, the thought of surgery petrifies me. While the idea of more time is terrific, I don’t think I have fully absorbed the idea of little time as it stands. Brian seems to be doing so well with the exception of his right hand becoming almost non-functional in the last week. His speech is not too bad and he is very alert and in a great mood.

Also, to me more time isn’t worth it if it is a poor quality of time. I just want what we have remaining to be wonderful.

And the thought of spending more hours in the hospital dealing with the university system makes me want to put my fingers in my ears and hum “Mary Had a Little Lamb” over and over again. It is selfish on my part, but the surgeries and time in the hospital are VERY hard on us as a family. I don’t know what the recovery would be, but I hate having to choose whether to spend the night in an ICU waiting room chair where I can be close to my husband who may need me, etc, or home with my boys who also need me. I hate that my boys don’t have Daddy at home and are tossed between friends and family members while their parents have to make difficult choices. Grant has been acting up as it is and I am afraid of what may be in store in the aftermath of another surgery. This is WAY harder on my kids than anyone who doesn’t spend every day with them could possibly understand. I know kids are resilient, but they are also fragile. My kids need stability and I feel like every time I turn around, we are about to turn their lives upside down AGAIN. It makes my head spin.

Also from my standpoint, I want to look past my own issues and hardships and do whatever it takes to be with Brian for as long as possible. We all know that if I ever felt like Brian made a choice not to have a surgery that could have given us more time because I was exhausted from handling the home front and discipline and stability, I wouldn’t be able to live with myself the same way.

Lastly, from my standpoint, I am tired of having to help make this choice. And I am grateful for having this choice. Does that make sense?

From Brian’s standpoint, he feels good and stronger right now and wants to do SOMETHING to be aggressive towards the tumor. He just doesn’t know what that SOMETHING is.

On another note, we were interviewed last week for a message at our church this weekend. The message is about Finding Peace. We will be there at 9:00 am (we live across the street), but there are services at 6:00 on Saturday and 9:00 and 11:00 on Sunday. They will show a video clip during the message sometime from our interview. I can’t wait to watch it because I need to remember what I said about how we find peace in the midst of our struggles.

KEEP BELIEVING

Saturday morning, we were given our marching papers from the hospital. Just 19 hours after Brian's surgery, he and I were driving home together.

We were surrounded by family and friends this weekend - a weekend with cool, fall weather, a warm cozy fire and good company.

Unfortunately, Gavin is still sick. He does fine most of the day, but spikes a fever in the evenings, all night and in the early mornings. Since Wednesday night, he has eaten a sleeve of Ritz crackers, a small bag of McDonalds french fries, 1/4 bowl of mac-n-cheese and several tortilla chips - most of which was consumed today. He drinks about 5 cups of fluid a day and pees only twice. The call center today told me I HAVE to push fluids through him or he will get dehydrated and his body is probably on the verge as it is. His fever this evening was near 104. I will call the doctor's office in the morning to get him seen. He has almost no other symptoms.

Tonight, Sunday, Jan, Brian's mom, is spending the night with us to be here should any emergent situation arise with Brian or Gavin. I feel so much more at ease knowing she is here that I can attend to whomever needs me most. Right now, surprisingly, it is not Brian. It is Gavin. He trembles and shivers and sort of moans off and on. Also, she will be here should I need assistance in the morning with getting Grant off to school and tending to Gavin and Brian.

Please pray for Gavin right now. Pray for God's protection over the rest of the house, as well.

Please praise God for his amazing work in Brian right now. We have an appointment on Wednesday with the oncologist again to discuss possible further treatment. It has been 4 weeks since Brian's last chemotherapy treatment. He is feeling stronger and not as symptomatic right now causing him to consider further treatment in the near future. His legs are weak as he did little walking for the last 7 days. He still has some surgery recovery to do, but he gets stronger each day.

KEEP BELIEVING

There are more examples in my life than I can take the time to outline of times when our desert places were turned into the land of plentiful through faith, trust and prayer. God orchestrates our lives in ways unimaginable to us when we are willing to let it go and hand over the reins to Him humbly. The last two weeks, we have spent much time reflecting on God's plan for us, talking about peace, faith, our love, salvation, death, our past and the kids' future. We have shared tears and heartache and desperation and devastation as we struggled to let go and rest that Brian's life is in God's hands.

Today, after many hours of conversations and intentions made known to everyone that we would like to move forward with this surgery that would so obviously help Brian, Brian was taken to surgery around 3:30 pm. The surgery itself lasted around 30 minutes. Total pre-op, post-op, surgery and recovery time was around 2 hours. Brian was under general anesthetic. The procedure involved putting a permanent tube into Brian's right ventricle.

this is Brian's MRI two times ago - mid October labeled to show you what a ventricle is

Otherwise he is doing well and is recovering fine. He is still speaking better than last week, is alert and feels good.

The quality of life given back to us is immeasurable. What we have just done has not at all affected or addressed the cancer, but has alleviated Brian's fast developing symptoms causing a rapidly deteriorating condition.

And I believe God orchestrated this entire event:

Brian and I were inches away from canceling the consultation with the surgeon last week since we were not seriously considering a surgical resection at this point in time. Had we done that, we would not have personally met Dr. K and I do not know that he would have so rapidly read Brian's scan and personally called us with his finding and recommendation. We were not supposed to get the results of that scan until this morning. I shudder to think of the condition Brian would have been in today given the rate of the spinal fluid building up in his ventricle. Instead, Brian's complications were eliminated by Wednesday night via a temporary drain and now with a more permanent shunt.

I had the ball rolling for hospice assistance on Wednesday morning, but now we are considering further treatment.

Wednesday morning, Brian could barely tolerate light, wind, noise and movement. Today he wants to get out of bed, get home and play with his boys.

Last Friday, I had told my mom that she didn't need to stay past the weekend. We didn't need that help yet. Sunday, Monday and Tuesday she stepped up helping my kids while I attended to Brian's needs which were quickly and unexpectedly growing. Wednesday, Thursday and Friday she was here to get my kids to and from school, homework finished and baths and meals administered, including tending to my very sick Gavin. Today, she took the boys to her house for the weekend. It gives her time with Dad and back in her environment. It allows me the freedom to be with Brian instead of choosing between the boys and Brian. It gives the boys a welcome change of pace and some fun. Also, it gets sick Gavin out of our house and allows the house a couple days to lose the germs before Brian comes back home.

I know I made my voice very well heard at the hospital on Brian's behalf. Before each conversation as Brian's advocate, I felt the peace of Christ guiding me to use a respectful approach, logical wording and calm demeanor. My words were His words and because of making our desires known, I find it no coincidence that Brian skipped lunch despite the urgings of both a Physician Assistant and a Resident to go ahead and eat since he was not scheduled until Saturday only to discover that there was a cancellation and Brian's procedure took its place this afternoon. Had I not made our heart's desires and our frustrations known in such a manner, I do not believe Brian would have been placed on today's schedule. Had Brian eaten, he could not have had anesthesia.

Also, Dr. K. is a Christian man. Just prior to surgery, he came into the room and said he prays before each surgery and asks the patients to join him in prayer if they do not mind. He prayed for Brian's recovery and his performance and in thankfulness for the gift of salvation through Christ. It was a moving moment and one that we have never experienced before.

It was as if God himself laid his hands right on Brian and said, "I'm not done with you yet. I have more plans for you and I will be glorified even more through you." And I have come to understand that even through death, God can be glorified.

While this surgery has not done anything for Brian's prognosis from the tumor, it has restored within Brian a new hope and a spark to live his life, however long it may be, even more humbly and in greater service to the Lord with continued dignity and character. It has allowed him to come back home as the Brian we all know and love continuing his exemplary life and legacy.

Romans 8:28 “And we know that all things work together for good to those who love God.”

KEEP BELIEVING

Surgery is occurring today at 4:00 pm.

That is all.

Have to run.

KEEP BELIEVING

So, the hospital FINALLY has an answer that surgery will be, AT BEST, Friday night and most likely Saturday morning. So, I, naturally, find this unacceptable and let the nurse know this:

• We have been asking all day. Why are we finding out at 8:30 PM there will be no procedure tomorrow when we have been asking all day? What about the 3 other people that gave us indication it would happen on Friday? I went through every level of communication I knew to go through - called the DR. Office. talked with the educator of the floor nursing staff, talked with the head nurse of the nursing staff, talked with the Physician Assistant of the surgeon, talked with the Nurse Practitioner for the Surgeon, talked with the staff nurse caring for Brian on every shift. Told them we have finally come to terms with a limited life and want to spend it surrounded by family and friends and loved ones in OUR environment. Came into this hospital for what we were told would be a quick and easy procedure. Now Brian is going to be in there for 4 days total.

• We have been asking all day. Why are we finding out at 8:30 PM there will be no procedure tomorrow when we have been asking all day? What about the 3 other people that gave us indication it would happen on Friday? I went through every level of communication I knew to go through - called the DR. Office. talked with the educator of the floor nursing staff, talked with the head nurse of the nursing staff, talked with the Physician Assistant, talked with the Nurse Practitioner for the Surgeon, talked with the staff nursed caring for Brian times every shift. Told them we have finally come to terms with a limited life and want to spend it surrounded by family and friends and loved ones in OUR environment. Came into this hospital for what we were told would be a quick and easy procedure. Now Brian is going to be in there for 4 days total.

• We have been asking all day. Why are we finding out at 8:30 PM there will be no procedure tomorrow when we have been asking all day? What about the 3 other people that gave us indication it would happen on Friday? I went through every level of communication I knew to go through - called the DR. Office. talked with the educator of the floor nursing staff, talked with the head nurse of the nursing staff, talked with the Physician Assistant, talked with the Nurse Practitioner for the Surgeon, talked with the staff nursed caring for Brian times every shift. Told them we have finally come to terms with a limited life and want to spend it surrounded by family and friends and loved ones in OUR environment. Came into this hospital for what we were told would be a quick and easy procedure. Now Brian is going to be in there for 4 days total.

The decision is not official, but I believe Brian will have a shunt installed soon. When I say soon, of course, I mean I HAVE NO IDEA WHEN, because that would require an answer and commitment and I can't obtain that. When I say I have no idea when, I mean sometime on Friday or Saturday. In which case, Brian would be released sometime on Saturday or Sunday. So, I guess technically I have SOME idea of when.

I have plead our case to every single solitary person that crosses our path - this has helped Brian, we are thankful for this, now we just want the shunt put it so we can go home. Brian tells everyone, too. I explain that we are dealing with advanced Grade IV cancer and have finally come to peace with that after many years of dealing with it. We want to be at home surrounded by our friends and our family. We want to be together in OUR environment. No alarms and tubes and beeps and blips and things that go ping. No one seems to be in any sort of urgent mood except us, but I continue to do my best.


Brian is feeling so much better. He was up on his feet a bit today. He was still very unsteady and his right side was weak and slow, but his mood is night and day different. Yesterday being night and today being day. He is having conversations with people and eating fine and feeling so good. He says he is stronger and feels clearer in his thoughts, etc. In fact, we were watching (or attempting, anyway, with cell phone calls and vital sign checks constantly interrupting) RENDITION. We began watching this yesterday before we were told to come to the hospital. Part of the movie is subtitled. Today, Brian remarked, "I can read the words today." I inquired, "Could you NOT read the words yesterday?" He said, "Not really." In addition, his speech is improved, but still not what it was a few weeks ago. He is still struggling with some number functions. He had no idea what the year was, but he assures me he had no idea what the year was before, either. I said, he probably had at least an idea.

He is getting no sleep. He had a roommate that has been snoring and unresponsive since he arrived last night. The roommate has more alarms and machines that go ping than Brian does. Anyway, after telling every single person that would come into the room and ask what they could do for Brian that he wanted to be moved to another room, he was finally moved at 4:15 this afternoon.

The biggest restriction Brian has is movement right now. This drain is coming out of his head and into a reservoir bag on a pole next to him. It works by gravity. If the brain does not drain the spinal fluid through normal means, it is picked up by the drain and into the bag. There is a level and a laser attached to the bag contraption and they point it at Brian's ear. His ear needs to be level with the bag to keep the equilibrium and pressure correct. If he raised or lowered above or below the bag, the spinal fluid could drain faster than it should, or fill up in his head faster than it should. Either is not something that is pleasant or desirable. That is a nice way of saying, it could be bad. So, if Brian is going to raise or lower his head, he has to tell a nurse so s/he can clamp the drain until he is repositioned, reposition the bag and finally unclamp the drain. This would basically suck to have to endure for another day when we know it is working and we want to just move on.

Gavin is vomiting today. Awkward segway, I realize, but hey, facts are facts. He is sicker than a dog. I have no idea how or why that term ever came to be, but he feels awful. He turned down a chocolate chip cookie and a Hershey Bar today. For those of you that know Gavin, you KNOW he is sick when that happens.
Regardless, due to this sickness, I am not taking him to the hospital to see Daddy. I think I may take Grant for a couple minutes. They have a Spotted Cow (one of his favorite ice cream shops) in the hospital, so I have effective good behavior bargaining power. He is packing a Twinkie to take to Daddy. I am pretty sure he plans on eating it, though.

Anyway, when we know more about when the surgery may be, I will keep you posted.

KEEP BELIEVING

As I write this, Brian is having a hole drilled into the top of his skull and a drain installed to relieve the fluid built up in his brain.

I may not have time to write all the details because this procedure is only supposed to take about 45 minutes, but I will get in what I can.

As you know from my previous post, the surgeon called today. We were awaiting a phone call to determine the schedule. At 1:15, we got a phone call from a nurse saying they have been holding a bed for Brian and was he on his way. I explained that we were waiting for a call from the doctors office, but we could be there right away. We were there within 40 minutes - around 2:00. At 3:00 Brian, was finally taken to a room. Hurry up and wait.

After he was made comfortable in his room, Dr. K's nurse practitioner assessed Brian, read his scan further and came back explaining the options for draining. She was to speak with Dr. K. and then have a recommendation. Dr. K and the nurse practitioner told us around 4:45 their findings. As it turns out, I misunderstood from our conversation the type of swelling Brian had. He has swelling in the ventricles. The ventricles are the two large fluid filled cavities in the middle of the brain. His are enlarged. Typically, those with enlarged ventricles have a drainage problem for whatever reason and can have complications. However, the complications are not typically acute focal symptoms as Brian is experiencing - the right side weakness, the speech issues, etc. Still, they recommended a procedure which would drill a hole in Brian's skull insert a tube and drain the spinal fluid off the ventricles to normal pressures. They will then monitor his neurological progress - speech, right side, stability, balance, etc. - to see if this improves. Typically, they monitor for about 24 hours.

IF this relieves Brian's symptoms and causes an improvement, Brian will likely have a more permanent drain installed. One that drains from his ventricles to his stomach. Weird stuff. Sci Fi Channel.

Oh yeah, I forgot to to tell you, the procedure Brian is currently undergoing, is happening right in his room at his bedside.

What I also haven't told you yet is that this day has been one miscommunication after another and WE have suffered from it. I am so frustrated.

First of all, the surgeon's office neglected to call us and get us to the hospital when we they wanted us and were ready for us. Therefore, we were delayed - hurry up and wait. Then, when we arrived, and they decided to do the procedure, they wanted to move him from the overflow neuro ICU to the regular neuro ICU. Hurry up and wait. This all happened right around dinner time 5:30, so Brian was getting hungry. He was told not to eat due to upcoming procedure. Then it became apparent that shift change was going to occur and it was not going to happen before shift change. Hurry up and wait. SO Brian was given a sandwich and baked Lays and water 6:00. THEN, the resident surgeon performing the installation of the drain calls around 7:00 and says it will now be 10:00 at night before he can do the procedure due to food in Brian's stomach. Hurry up and wait.

I was LIVID!

The entire reason we agreed to this is that we were told it was quick and easy and could provide immediate relief. Then we get here and are told it MIGHT provide relief. Then it gets delayed by hours due to food. And BAD food at that. Brian still isn't sure if it was egg salad or chicken salad. And once again we don't know WHEN we are leaving the hospital.

So ANYWAY, this could have all been avoided if ONE person would have made a call the way they were supposed to in the first place. This drain would have probably been installed this afternoon. NOT at 10:00 at night.

ALSO? They have to watch him for 18-24 hours to determine the benefit. THEN, surgery would have to be scheduled for installing the permanent drain and probably wouldn't happen until SATURDAY with release on Sunday or MONDAY. We specifically made it very clear that we are aware of Brian's advanced cancer and do not want to spend these precious moments in the hospital. We want to spend it as a family - together - in our home with love and laughter and friends and family and our children and good movies and an occasional beer.

SO I am mad and frustrated because other people's mistakes have cost us precious time. Time that cannot be replaced. Time that in invaluable at this point in our lives.

You can bet I will make this known to DR. K in the morning. I also let everyone that touches our path know that if this isn't helping Brian, I want to go home TOMORROW with hospice help and big fat apology. I don't care if it is TEN AT NIGHT.

And of course, I won't let my venting and frustrations get in the way of doing what is best for Brian. Don't worry. I am just mad.

Update: Brian immediately felt relief from the drain. He was more alert last night than I have seen him in several days. You could see in his eyes and his facial expressions a difference. They will continue to monitor him today to see how he fares. Don't know when to expect a decision for surgery for a permanent tube or not. Sometime today. I came home last night to get some sleep and to show my presence to the boys. This is a time of turmoil in our home as it is. Gavin came home from school yesterday and his Daddy was gone. We don't know when he is coming home. So, I am doing everything I know to balance my time and presence with Brian and the boys. Thank God my Mom had guidance from the Lord to stay with me this week. I had told her it was unnecessary just on Friday.

Also, If anyone is considering it, please do not send anything up to the hospital. Brian is at OSF - St. Francis in Peoria, but being in ICU, he is not allowed to have much of anything in his room.


KEEP BELIEVING

Just when I feel we are approaching the end....

Dr. K, the surgeon, called today. According to the MRI yesterday, Brian's tumor is unchanged. HOWEVER, there is a tremendous amount of fluid built up in the cavity from his prior resection. This fluid, he said, probably isn't draining due to tumor sediment blocking normal ventricle drainage. The fluid, he believes, is causing Brian to be symptomatic, and not NECESSARILY tumor progression right now.

He wants to put Brian in the hospital today or tomorrow (waiting for a scheduling phone call) to temporarily drain the fluid and monitor Brian's progress. Depending on that outcome, he would then do a surgery to help the drainage process (not really sure what it would entail) that he said would last about an hour. Most patients leave the hospital within a day or two.

He really thinks this is the best thing for Brian right now. Relatively easy with little risk, potential immediate relief and easy recovery.

So, we wait for the word on scheduling this...

KEEP BELIEVING

(In the what-the-heck-is-that and why-are-you-showing-this-to-me categories: This is Brian's brain. The top picture is from the Spring. The bottom picture is from the Fall. You can see the considerable growth of the odd area of enhancement on the right (which is actually flip-flopped from reality: the tumor is on the left just above Brian's ear.) It is now the size of a golf ball. The various colors of enhancement on the bottom are more typical of tumor progression. The more definitive lines around the enhancement are more typical of treatment change. )

We meet with the surgeon today at 2:30 (ish)(CDT). Please pray for wisdom and guidance for us. Brian is VERY leery on any surgical option. He simply does not want to go through ANYTHING remotely close to what he went through in April of 2007 (you can go through the archives and read about that hell of a journey). He does not want any more deficits than he has now. If he is living on borrowed time (well, I guess not IF, we all are, really), he wants to spend it enjoying his family and friends and surroundings, not recovering from surgery. Etc. I find that admirable.

Anyway, if you read this post before our appointment time. Think of us. Pray for us. Etc.

Once again, I am humbled by all the response and love to our situation. I keep telling Brian what an amazing impact he has had on the world. He doesn't get it, he says, but in the end, isn't that what we all want: to hope we made a difference for the better on the world.

KEEP BELIEVING

Last time I wrote a Miracle Monday post historically capturing our journey with this brain tumor, we had made a decision to attempt an experimental surgery in Sacramento with a surgeon named Dr. Michael Edwards. Dr. Edwards came very highly recommended from Brian’s radiation oncologist in Denver. With the type of Brian’s tumor, Grade III Anaplastic Astrocytoma, the best chances for longer-term survival were with radiation and chemotherapy following a debulking surgery. The more they could get out, the less was remaining to treat with these other conventional regimens and the more effective they were. Any surgery, we knew, would increase Brian’s odds tremendously, and we were very willing to oblige after Dr. Edwards explained the process.

Dr. Edwards worked in conjunction with a neurologist for this procedure. The surgery process was two-fold. The first step of the surgery was to actually remove part of the skull near where they hoped to resect, but rather than a resection, they would place a group of electrodes attached to a small film ON TOP OF BRIAN’S BRAIN, leave the cords attached to electrodes accessible for the next step, and close Brian back up. For the next two days, the electrodes were plugged into a receiving end in a special monitoring ward in this hospital where a technician constantly watched the monitors of all the patients for possible abnormal brain activity - seizures, etc. The neurologist performed the next step. He would plug his stimulating machine-like contraption into the accessible wires and perform a series of neurological tests right there in Brian’s room. Yes, right out of Science-fiction, ladies and gentlemen, Brian had brain surgery attaching some electrodes to his brain and came out with wires protruding from the gauze turban he now wore while a neurologist turned some dials and flipped some switches giving a small signal to that area of the brain to see how Brian reacted. It was TRIPPY!!! He would ask Brian to read a couple paragraphs from a magazine and then flip the switch to the different electrodes. Sometimes nothing unusual happened and sometimes Brian couldn’t speak or would slur greatly. The neurologist would ask simple commands while stimulating the electrodes and determine if Brian could follow the directions. Sometimes Brian did, sometimes he had no recollection of the question. What the neurologist was doing was creating a map of Brian’s brain, determining which functions like speech, memory, and comprehension were located near those electrodes. You see the issue with brain surgery is this – the tumor is not healthy. It is not functioning brain tissue providing any merit to Brian’s basic functions. The tissue SURROUNDING it MAY BE. To cut through that tissue would mean possibly severing the neurological path making certain functions possible – like speaking, remembering, comprehending, moving, etc. At this point, with the pathology and before any other treatments, that was not a risk worth taking for then 24-year-old Brian. If they could find a section of brain that did not have important functions through which they could enter to remove the tumor, then the resection surgery would have less risk. Unfortunately, this testing was proving that Brian did indeed have MANY vital functions surrounding this tumor. After 2 days of recovery from the first portion of the surgery, and 1 day of stimulation, we were regretfully informed that they could not do a resection, but would simply remove the electrode grid, and close Brian back up. We were devastated, defeated and despondent.

This hospital stay was as dark a time as our first week of diagnosis. It was perhaps darker because we were in California – Brian, me, his parents, and his brothers - with no support system. It was 1997 before cell phones were as prevalent and nationwide affordable as they are today. In addition, the surgeries and stimulation of the brain caused Brian’s brain to swell to new proportions. Up until this point, the only symptom Brian had of this tumor was the sensory seizure he had experienced the first night of diagnosis. With this new swelling came headaches, slurred speech, occasional lip twitching (another mild seizure) and the aforementioned sensory seizures. They were harder to control and harder to predict. The doctors were unsure if he would completely regain his functions. Brian was in an incredible amount of discomfort and it was agonizing to witness – for all of us. We also knew that Brian had undergone all of this, yet we were right back where we started – only we had lost a few weeks of treatment time. In fact, the swelling caused even a LARGER area to now treat with radiation upon return to Denver.

We had placed an unrealistic amount of hope in this one doctor and this one procedure. Anytime we put too much of our hope in things of the world and in imperfect human beings, we are bound to be disappointed at some point in time. It is unavoidable. After 8 days in the hospital, we all left Sacramento. Brian, Jan (his mom) and I flew back to Denver, and the rest of his family flew back to Illinois.

This is a very difficult week to assess for any rays of light and hope, let alone miracles. The week was awful. Brian was worse than when we started. There were new problems to handle with the lip twitching seizures and occasional slurred speech. He was now experiencing headaches and had to take large amounts of steroids to reduce the swelling. It was incredibly unpleasant. However, in life, when you look deep, you can see the hand of God working through your existence. First of all, while cell phones were not prevalent, I was able to use the hospital phone and calling cards to touch base with my family. I spoke with several relatives who would pray with me on the phone and pray over our situation. Our contact circle was increasing. Caterpillar employees Brian had worked with in 3 different cities in Illinois as well as Denver were deeply concerned and praying over our situation. Lockheed Martin employees I had worked with in now 4 different groups and 2 different states were concerned and praying for us. Our parent’s employers, our sibling’s employers, teachers, cousins, aunts, uncles, (and we have A LOT of cousins, aunts and uncles) and employers and friends of theirs were all praying for us. I didn’t even realize the multitude of people that were becoming engrossed in our situation and praying for us. I remember calling cousin Rhonda once around 1 a.m., feeling completely desperate and lost. When she answered, I bawled that I was so sorry to call her at such a time, but reminded her she said call anytime, to which she replied, “It’s okay, I was up waiting for your phone call. God warned me you were going to call, and I have been sitting her praying for you.” She prayed for me and I felt so much peace after the phone call. At one point in time, in a telephone conversation with Rhonda while I was in the waiting room for the surgery, she said, “I am going to pray that God sends you someone in ministry that lays hands on and prays for the sick. The Bible specifically states we are to have the elders lay hands on the sick and pray for their healing.” When I got off the phone, I sat next to a lady in the waiting room – a tall, striking lady whose husband was having routine gall bladder surgery. We began a conversation as she could see the desperation in my face. She stated that her husband was the pastor at an inner city church and they would be happy to pray for us if we wanted. Of course we wanted this. I told her of my recent conversation with Rhonda and she replied, “We do that. When my husband is through with his surgery, we will do this for you.” It was pretty amazing.

While this week was desperate and trying, it was all shaping according to God’s purpose. We didn’t know it. We couldn’t see it. We didn’t really even feel it. However, I find when I look back on all times of my life, regardless of sure signs of God’s presence, all of our circumstances have come together for a greater purpose or for our good. The difference is that we have learned to trust it is there despite the blatancy of it. This was one of the first weeks that trust was truly tested. God uses our most difficult times to dray us closer to Him – make us realize He is all we need and to shape us more into His image. God is always working in the spiritual realm despite our earthly circumstances. We would learn this more in the next few weeks. As far as I was concerned, if I never saw Sacramento again, it would be too soon. That was July 1997.

God had other plans.

For more Miracle Monday posts, visit Beth at A Mom's Life.

KEEP BELIEVING