Like father, Like son...

The year was 1977. Brian was in Kindergarten. His Aunt Joyce had come to visit as they were living in Hong Kong. Brian and Aunt Joyce were discussing his new abilities to sound out words and spell them. One such words was "dressed."

Brian: I know how to spell "dressed." J-r-e-s-t

Aunt Joyce: Actually, "dressed" is d-r-e-s-s-e-d

Brian: No, listen. It starts with a J.

Aunt Joyce: Ask your teacher tomorrow how to spell "dressed."

Brian goes to school and comes home the next day. Aunt Joyce eagerly awaits.

Aunt Joyce: So, Brian, did you ask your teacher how to spell "dressed" today?

Brian: Yes.

Aunt Joyce: And? What did she say?

Brian: She didn't know how to spell it either.

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The year is 2008. Gavin is in first grade. It should be no surprise that Gavin's first journal had this page for an entry.

Gavinese translation: ...the fish because the fish was dressed like a person and it was crazy to....

=======================

The year: 1977. Brian has mastered the unknown art of scaling the inside of a doorway. His mom captures this memory of it:

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The year: 2008. I show Grant the above snapshot from Daddy's lifebook. It should be no surprise that I capture this snapshot minutes later:

I can only pray my boys continue their likeness to their father as they grow up...

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snow angels

I'm not talking about this kind...

I'm talking about this kind.....

The kind that take the shape and form of neighbors who have developed a plan for removing snow from our driveway for us. The kind that take off their wings, grab their scrapers and shovels and remove nearly an inch of snow covered heavy ice without being asked.

The kind that make an icy day that could have been disasterous...

...tolerable, by easing the load so I can attend to important tasks like banging ice off this tree.

...and enjoying the beauty in the midst of the burden.

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our interview - a few things I WISHED I would have said...

Not to beat a dead horse, but the last post I gave you a link to our interview at church lat weekend regarding finding peace.

As we were leaving the parking lot, I was overcome with a few thoughts I WISHED we would have shared. This is the letter I wrote when we got home so I could capture those thoughts.

Pastor Cal,

Brian and I completed our interview yesterday with Dave regarding our difficult situation with Brian’s brain tumor, bleak prognosis and finding peace in the midst of that.

Naturally, as we drove away, Brian and I thought of 10,000 things we wished we would have said that we didn’t say – the countless times we experienced God’s grace in the midst of our struggles – an inspirational card sent when it seemed all we could do was cry – a letter from someone Brian barely knows telling us watching Brian and the way he handles the situation gave them a renewed hope and attitude in their own trials – an insistent lending hand just when I thought I couldn’t handle another unexpected task.

However, I think what we most regret not saying outright is that finding peace in the last 11 years of our struggles has always been a choice. It is a conscious effort on both our parts. Brian had a choice as he lost his ability to use his right hand to never throw a ball again OR to teach himself to throw with his left hand. He chose his left hand and he can still pitch to his boys in the backyard. He had a choice to never write again OR to teach himself how to use his left hand for signing his name and eking out some legible penmanship. He chose to teach himself how to write with his left hand. Brian could easily choose to sit in a corner and fall into a deep depression, which would be understandable given his diagnosis and resulting issues, but he chooses not to wallow in despair. No, he rallies each day despite his own body making it difficult to do so. As for myself, I have a choice of not having things performed around the house because Brian can no longer do them OR I can become Brian’s hands and speech where he cannot. Brian has taught me how to better handle confrontation in a calm and respectful manner when he was unable to speak the words he knew needed to be said. Brian has walked me through wiring outlets and 3 way lighting fixtures when his own hands failed him. Brian has taught me how to handle power tools and hand tools and other trades equipment. He is giving me life skills to handle the things life may throw at us in the event of his possible death, but for now, it gives us great pride to accomplish life’s challenges together – as a team. I have a choice each day of denying the situation and living like it isn’t happening OR making each day memorable and enjoyable.

Whenever people tell us they admire our strength, our determination or our attitude, I tell them there is nothing special about us. We are not defined by our circumstances in life. Peace comes from how we choose to respond to our circumstances. There is nothing any of us could do to honor God more than to handle our circumstances with the utmost dignity and Christ-like character possible. I look at Brian’s attitude and the choices he has made over the last 11 years, and I see nothing more God-honoring than that.

We choose to love and to laugh and to cooperate and to communicate and to make each day count for something. It would be easier not to choose these things, but it would rob us of peace and joy that is so readily available. We choose peace.

In Christ,
Angie O’Neill

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our interview

Our interview about finding peace in the midst of life's storms was played at church this past weekend.



Here is a link to the audio file. Go to message player and click on the audio file for Finding Peace on Dec. 14. I could not figure out how to embed it directly in here because I am stupid about such things, so to listen to this will take you a couple of steps. I am sorry.



This link is to the entire message which I would naturally encourage anyone to listen to because I think it is powerful, but our interview portion starts with approximately 10:30 remaining (about 32 minutes into it) and plays until about 4:00 minutes remaining. The entire message is a little over 40 minutes.



You can hear some of the issues Brian has with his speech here. Prepositions are one of his most challenging issues - he uses the wrong one often. He knows what he wants to say, but the words just do not come out all the way he intends - Expressive Aphasia.



There were so many things I wished we would have said after the interview was finished, but I think the guy that did the editing of the interview did a fantastic job making it coherent and meaningful. One day I will post the letter I wrote when I got home from the interview that afternoon of all the things I wished I would have said. For now, though, I want you to listen to the interview in its purity without knowing the "coulda, shoulda, woulda's" of it.



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a decision...quality time....pictures with Santa...teeth...a Christmas Card

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 Brian's oncologist, Dr. G. (no relation to Mrs. G.) on Wednesday. He was not surprised that Dr. K., the surgeon, discussed a surgical option with us. When asked whether Dr. G. thought chemo or surgery was the next best step, he stated that there is no right or wrong answer. From his perspective, a surgery would give him the pathology he needs to determine exactly what is in Brian's head and therefore the best approach to treat it. However, from a clinical perspective, there is no real answer for how much surgery would improve Brian's condition. As Dr. K. stated, it would really be to debulk and buy more time. Dr. K. said for most patients he would not have recommended a possible surgery, but for a father of two young boys, he wants to give our family as much time as possible.

Dr. G. said he would recommend chemo and see how Brian fares (fairs? Aunt Jane, what is it?) for a while and then discuss surgery again if that is something we were interested in later.

The thing is, as both doctors and we know, there are enormous pros and cons to both choices. It just seems from our perspective that a 15% chance of having more problems than Brian currently has after an additional surgery does not make us as excited about trying that option for the sake of more time. More time does not mean as much if the quality of that time is compromised.

So, we are scheduled for chemo on Dec. 29th in the morning as of right now. Ask us next week if we keep that appointment or if we schedule surgery. We know there is no right or wrong decision in this scenario.

The quality of time we have had as a family lately has been immeasurable. Brian is in great spirits and is feeling better. His right hand and leg are still incredible weak and uncooperative to his will, but he doesn't let it get him down too much. And because he has been so much fun to be around and more involved with the kids and such, it makes me even more willing and happy to be his hand and foot and speech when he can't be. Not that there are ever conditions on my help for him, but it makes it enjoyable. You know? He is having less muscle pain and neck ache since he went back on a low steroid dose and is gradually tapering over the next 3 weeks. He even tries to work out. He gets on the elliptical for 10 or 15 minutes at a time and goes very slowly trying to work his body whenever he can.

We have been thoroughly enjoying our Netflix (thanks Murph and Jen) subscription together. We are even taking one for the team and renting a couple for the kids soon. I know, I know. We are saints. Go ahead and pat us on the back. Also, I have figured out if Brian does pass away, I can become a suburban pot dealer. Mary Louise Parker has it mastered on Weeds, so I know it must be doable. Actually, my favorite part of the morally conflicting show (which is also my new favorite type of movie and show in general), is listening to the "Little Boxes" song at the beginning taking me back to my childhood and riding with Aunt Jane in the car listening to her explanation of the meaning of the song, enjoying the irony that today I live in one of those little boxes, but that I am SO NOT made of ticky tacky.

Also, we have been enjoying our morning coffee together watching some news and sports recaps. We just spend a lot of time together - occasionally a lunch date, an early morning snuggle after the kids are off to school. It is like being newlyweds again with children present, but a bit of freedom when they are at school.

As a family, we have been watching lots of Christmas specials and playing a lot of boardgames. Yesterday we went to see Santa at the mall so the boys could tell Santa we would be in Missouri for Christmas Day and rattle off their list of items they desire even though I know for a fact Santa is not delivering the entire list. Santa believes children appreciate more when they are not fed every one of their hearts' desires at our house. When we got to the mall, Santa was taking what we were told was a quick break, so we got a pretzel and I told the kids that Santa had to pee. I knew they would laugh at that, which they did. Humanizing their heroes is one of my favorite things to do. When Santa did not return for about 45 minutes, Grant said, "I think it must take fat people A REALLY LONG TIME to pee."

This is the terrible off center photo we paid the 16-year-old elf $25 to take and print. Ho Ho Ho. We weren't dressed in coordinating outfits and the boys wore what they had on at school, but it captures us fine - with the exception of the top of Brian's head, which is incredibly ironic, because if he could live without it, we would gladly cut off that troublesome area of his body. At least I was wearing one of my most obnoxious shirts possible and we captured the red carpet full of lint and debris to make up for the adolescent elf's spacial challenges.

Gavin lost another tooth yesterday. His top front one. He looks and talks so weird without it. I will get a photo soon. I haven't taken any pictures in many days. Based on the photo above, I should have brought my camera to the mall. Anyway, he wanted to show the tooth to his memaw who is coming for a visit today, so I told him he would have to write the tooth fairy and ask her nicely if she would leave the tooth, but she may not leave money if she didn't take the tooth. When Gavin was 2, I used to pride myself on my ability to translate spoken Gavinese when so few could. Now I can even read and translate Gavinese. Here is his note:

Dear tooth fairy,
Even though I lost a tooth
will you please keep it
under my pillow. Please will
you give me something.


Since he said please, he got to keep the tooth and $2. He told me he is going to do this every time now. And, personally, I think it is fine. It keeps the tooth fairy from hiding the teeth elsewhere in our house. By the way, how long does the tooth fairy keep teeth? I mean, I throw away just about every other project that comes my way unless it is a handmade clay something or other, but what do I do with the teeth and for how long and for WHY? Is there etiquette for this kind of thing? Will they want them some day? I don't have my baby teeth and do not feel that I am missing anything. Am I just not nostalgic? Am I a scrooge?



Speaking of Bah! Humbug! I have decided not to send Christmas cards again this year. I think just about anyone that would receive one of our cards reads this blog at least on occasion, so I am saving a days worth of work and over $100 and boycotting the obligatory ritual again. Brian thinks I will cave, but I didn't cave last year.

For your benefit, these are the images from which I was choosing for the card:










Consider yourself served. Merry Christmas, signed the Brian O'Neill family. You're welcome. Feel free to pirate those photos and add us to your refrigerator. Your home will be more beautiful for it.



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surgeries and interviews

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.

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something unfamiliar

Uncharted waters.

Foreign land.

Unfamiliar territory.

The other day, I had THIS at my house for a few hours:

Do you know what that is???

IT's a girl!!!

Pink, bow-wearing, blows her own nose IN A TISSUE, long haired GIRL!!

This is a friend of mine's daughter. My friend, M, has a 3-1/2 year old girl and 2 year old twin boys and spent the last few years in Mexico. Turns out, in Mexico, there really isn't snow, so M's cold weather tolerance is NON-EXISTENT. So while her kids are intrigued by the snow, M has been cleverly dodging their requests for winter wonderland playdates. Having spent a couple winters in Canada, I gladly offered to dress her kids up like Eskimos and let them experience WINTER (even though it is technically still Fall as Gavin keeps reminding me).

Turns out, this beautiful, steal my heart with her adorable smile and hair band with matching shoes FEMALE has her mother's tolerance for cold weather.

Still, it was fun.

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MRI results Dec 3, 2008

Brian had his first post operative MRI on Monday. Those results were read to us today.

First, though, I will report on Brian's overall health in the last month. On Nov. 4, his last MRI date, he could not lay down without having a series of seizure-like activities - dizziness and confusion - due to the increased spinal fluid in his ventricles. He also could not walk across a room without assistance. In addition, he was suffering from excruciating headaches. Since surgery, Brian has continued to improve in strength and neurological function. His walking became brisker and more stable than it was pre-surgery and improved gradually throughout the last month. In addition, his speech greatly improved. He tapered off the steroids so his appetite is back within healthy boundaries and his grumpiness has dissipated. He is not suffering from headaches much at all.

However, in the last week, Brian's body in general has been incredibly fatigued. He has low energy and his muscles and neck ache. His right hand since Monday has lost some function as his fingers barely move.

In talking with the doctor today, it appears the tumor has grown again. From 2.7 cm to 3.4 cm in one direction and from 3.2 cm to 3.5 cm in another direction - about a 15-20% growth. This is since the Nov. 4, MRI. The tumor is now pushing some of the healthy areas of the brain and that is most likely causing his right hand symptoms.

The overall fatigue and muscles ache symptoms are probably from one or a combination of things. From the surgery, it was discovered that Brian had low sodium in his system. His body is flushing sodium at a rate greater than it should. To alleviate this problem, he is supposed to increase sodium intake and reduce his water consumption. Both are difficult for Brian to accomplish. We have substituted Gatorade from water all together now. Low sodium can cause some muscle issues and neurological problems. In addition, around the surgery time, Brian was taking large doses of steroids. It could be that we tapered off the steroids too fast causing his body to be cortisol deficient. The steroids have to be tapered slowly in order for the glands to start producing cortisol on their own again since the steroids supplement the body with it and the glands stop producing it when one is on high doses of steroids. So, it is also suggested that Brian go back on a low dose of steroids and taper even more gradually over the next month.

As far as next steps for the tumor progression, here is where we stand. Dr. G (oncologist) is going to speak with Dr. K (surgeon) about his thoughts regarding surgery, etc. As you probably remember, Brian is pretty against any further surgical resection, so unless they think there has been some amazing change or something minor can be performed, surgery is pretty much out. That is a discussion between the two docs first, though. We are meeting with the surgeon on Dec. 9, 2008. The tumor board will discuss Brians case on Monday, Dec. 8 to determine from a radiological, surgical, radiation and oncological standpoint what they think should be prescribed. In all likelihood, the consensus will be further chemo if Brian is willing.

Brian is willing. He tells me he still has some more fight in him. He feels strong enough to handle further treatment. This is not the news we wanted to hear, but have come to be somewhat prepared for.

The next chemo will likely be VP-16 with Avastin or Carboplatin with Avastin. The VP-16 is a pill taken for 21 days at home. The Avastin is given IV every other week. The Carboplatin is given once a month IV. Both are tolerated pretty well, with the VP-16 being a bit harsher with respect to nausea. The Carboplatin mostly affects the blood counts, particularly platelets.

So, that is where we stand today. We will have a decision within the week for our treatment plan.

Our biggest prayer right now is for health for Brian and clarity in our decisions.

My biggest prayer, selfishly, is for a blessed Holiday month. I don't want anything to mar this time for my boys and for our family. There is a possibility this may be our last Christmas together and I just want it to be as perfect as it can be with lasting, good memories for our family. I pray Brian does not deteriorate and is not sick during these next several weeks in order to make travel easier, as well.

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role reversal

As a result of Brian's illness, it is no secret or surprise that I find myself in a role reversal situation. For instance, I am the primary driver now. In fact, I am the only driver now. I was used to sitting back during our cross-Illinois and Missouri trips and being in charge of the IPOD, the DVD player and the children's requests. Now, I find myself constantly saying, "Mommy can't do that right now because I am driving a car." I am getting used to the role reversal, but some days I just get a little angry at it.

Last week, I hung all the Christmas lights outside. I made the boys help me as it was a beautiful day and I truly needed the help. Still, a task that only two years ago Brian performed.

Also, I find myself trying to fill, for lack of a better term, VOIDS in the children's lives - those areas where I know they crave the male companionship and camaraderie that Brian would normally fill but simply can't. They long to go to the sporting goods store with Dad to look at camping and hunting gear instead of the grocery store with me looking at jasmine rice. They long to wrestle and horse-play with Dad instead of sitting and reading and coloring with me. I know this. It is so contrary to my intuitions, but I make myself do these things in order to give them the normalcy they deserve and the type of attention they crave.

We received our first significant snowfall yesterday and last night. Over 4 inches of incredibly HEAVY, WET snow fell on Central Illinois. In the middle of cleaning the kitchen post breakfast, I looked out at the boys playing and decided to don my snow gear and let the messy kitchen wait for me. (It did, unfortunately.) We built a snowman. I took them sledding. And when they decided they wanted to have a snowball fight, I decided I was finished. Some things I just won't do. Instead, I attempted to shovel the driveway. When I realized that 1/4 of the width of the driveway filled my shovel with snow too heavy to lift or budge, I decided I was truly finished and I came inside.


This morning, as the boys were getting on the bus, I watched them dredge through about 5 inches of heavy wet snow and slush, so I decided to get out the shovel again. I blazed a path from our house to the bus stop for their comfort and pedestrian ease. I also thought about Brian. Today he goes for his MRI. His Mom or Dad will be coming to pick him up. I didn't want him to have to worry about maneuvering through the snow, so I found myself heaving cumbersome shovel-fulls of snow off the driveway. I sprinkled some salt on the icy spots and I am hoping it does the trick for easing Brian's trek to the car. I have learned from watching him that it is easy to take many things for granted. One of those things is the ability to move gracefully. He can't stop himself or balance himself when conditions or his body fail him.

I have also come to know that as much as the role reversals sometimes get to me, they certainly distress Brian even more.

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When roses look alot like stamps on the wall...

Sorry I have not written in a while. We have been stopping to smell the roses.

Meaning, we have been simply slowing down and enjoying what is so obviously right in front of our faces each day that we ordinarily would miss.

Roses like snuggling on the couch with my hubby enjoying a DVR'd show or a Netflix movie.

Roses like helping the kids do a craft project...

Or Two...

Roses like making paper airplanes, bouncing bouncy balls, and playing board games.

Roses like making forts in the living room...

Sometimes roses can look a lot like this on the wall????

Only roses would have been a lot more pleasant than discovering this Halloween children's stamp on the dining room wall and following it with a conversation eerily similar to the one regarding the $85 tennis ball with the same child as the culprit, unsurprisingly so. Surprising is his ability to lie through his teeth about such incidents and his quickness to blame neighbor children for his own actions until I tell him I am going to speak to the neighbor children, so if there is something he wants to add or change about the story, NOW would be the good time to do so. Amazing how the story changes at that point in time. Turns out that TWO of the above RIP stamps on the wall were Grant's doing on purpose when I dug for information and the other TWO were accidents by Grant doing. Funny how deliberate they appear, especially when they were almost completely concealed by a greenery topiary. I only found them today because I was dusting.

Sometimes roses look a lot like Mr. Clean's Magic Eraser. Just Sayin'.

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Missing

Something is missing from this picture....

Also missing....

She failed to show up last night. Word is she had a late night with some girlfriends at a local establishment. Luckily for her, Grant could not find his tooth prior to his slumber, so his Mom had a legitimate reason for the tooth fairy's absence last evening. I am hoping she is more on the ball tonight.

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good thing they make me laugh to make their comments tolerable

Grant vomited last night. Ordinarily this would concern me as to what bug or what undiagnosed ailment may be sweeping its way into our lives again, but Grant is dramatic. He is a candidate for easy bulimia one day. He can make himself gag and vomit with little effort when he puts his mind to it. While we all want our kids to be able to do anything when they try their hardest, this is not high up there on my list of potential achievements for my children. Anyway, he was having a coughing fit. Given our experiences last week with Gavin, this should concern me as well; however, Grant's colds and sniffles inevitably settle into his chest for a 3-4 day cough historically. He is running no fever and has no other symptoms. He was simply coughing so violently his stomach began to heave and he vomited and spit out all his phlegm (you're welcome).

Anyway, as I said, Grant is dramatic. As he was coughing and making himself vomit, he threw himself into a crying fit - screaming and carrying on making little to no sense. Through sobs and shrieks he said things like, " I need a bucket." Then as I went to get a bucket he said, "Mom, don't leave. I need you. I want you." Then he would heave again and say, "I need someone else." I would stroke his back and say I was right here for him. He would say, "Get Daddy. I need Daddy." As I would start to leave the room he would say, "I want my Mommy." Then he laid down and fell back asleep for about 5 minutes. He woke up coughing again and started to make himself hurl once again. This time between drama bursts, he would declare, "I don't want to have friends over any more," as if somehow his playdate earlier in the day was responsible for his current state. So, I asked him, "Oh, Sweetie, is it Christopher's fault you are sick tonight?" He shouted back at me, "NO! It's no one's fault. I'm gonna throw up all night long now. Mommy, there's something in my stomach that's trying to kill me." Drama king.

On another note, we went and saw the Radio City Christmas Spectacular starring the Rockettes Monday night. I now know what the best of the hight school and college drill team becomes. I was not optimistic that my 5 and 7 year old boys would appreciate their grandma's ticket for them as I looked around and saw the entire audience was pretty much little girls with their mommies or Senior Citizens. However, they loved it. The stars of the show were the Rockettes with Santa as a close second. Gavin leaned over to me at one point in time and asked, "Mom, Does Santa know I was in the hospital?" I replied, "I am sure he does. He sees you when you're sleeping and knows if you've been bad or good, remember?" He said, "Good," I asked, "Why?" "Because I will get an extra special present since I was in the hospital," Gavin retorted. Am I not the one who is supposed to use Santa over HIS head?

Gavin liked the show, but not nearly as much as Grant. Grant was MESMERIZED. He asked me after each act if it was over and I would reply that I didn't know, did he want it to be over. He would reply, "No. Not yet." Grant loved Santa and the set changes and effects of the screen and stage moving, etc. I prefer him to love the show for that reason. I know it won't be long before he wants to see the Rockettes for other reasons. Not long at all. If my 8-1/2 year old nephew is any indication, it will be about 3 years, actually. When telling a friend he was going to see the Rockettes that day, he was met with an inquiry as to what are Rockettes. So, he replied with, "They're a bunch of hot chicks with big thighs that do a lot of kicking."

images courtesy Google Images

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bar fights and collectors items

Things are getting back to normal here at Chez O'Neill. When I look back over the last two weeks, I really can't believe we all survived with our sanity.

I would say sanity is relative, though.

Thursday I spent half the day crying my eyes out. I don't know why. I was overcome with emotion that I believe was FINALLY released when I got home from the hospital, felt like all my men were relatively healthy or at least improving and BREATHED for the first time in 14 days.

Gavin now has a phobia of the hospital. He is afraid to tell me when he doesn't feel well. I have explained that just because he doesn't feel well doesn't mean he will necessarily go to the hospital. Also, I have explained that the hospital is, in fact, what helped him get better. At home, he would have become sicker and sicker and could have died from his lungs not working right if we hadn't gone to the hospital at some point in time. He said they lied about putting a straw in his arm. It was really a needle first. Ah, true, wise Gavin. Necessary evils to get kids to cooperate.

Brian looks like he got in a bar fight. He has a raging black eye. Behind his ear is an enormous bruise - black and purple. His abdomen looks like he took a couple of kicks to the gut with its bruising. And the top of his head has a stitched up slit that looks like a beer bottle had its way with his scalp. This is all from the surgery - the bleeding that was not visible from the procedure making its way out of the system.

Grant is acting out. He has become a bit aggressive and destructive. Saturday, while I was away at a baby shower, he had his way with the big screen TV downstairs. Nerf gun war, apparently. There were little Nerf dart marks all over that were easily wiped away. However, the large scratches, MOST, but not all of which buffed out were a result of the NERF GUN attacking the screen. Grant's hand was on the opposite end of the gun.

Then Grant threw a fit in the store yesterday when I explained he was not getting a cookie because he disobeyed me again about keeping his jacket out of his mouth - the same jacket which now has an inoperable zipper due to the same mouth and teeth that can't stay away from it. He took off his jacket and swung it wildly in the air as hard as he could hitting an innocent lady as she walked by. When she heard my horror and shock-filled gasp, she sheepishly looked back and said it was okay. I think she was afraid of what might happen to the adorable, wide-eyed little boy whose mother was foaming at the mouth if she would have made a big deal about it. He was obviously going to have a consequence for his actions.

I threw away an $85 tennis ball today. On purpose.

When I arrived home from the baby shower on Saturday, I was told our basement toilet was clogged. The guys had spent a large portion of the afternoon trying to remedy the problem to no avail. One of my nephews had taken a large dump and it was thought this was the culprit. Plunging did nothing. I bought a sort of snake de-clogging tool and it also did nothing. In fact, it would not penetrate the neck of the toilet. So, I called the plumber today. The plumber tried the same things unsuccessfully. He then shop-vac-ed out the poop water and found a TENNIS BALL lodged in the neck of the toilet. INTERESTING. I am pretty sure my 8 year old nephew did not use a tennis ball to wipe his messy little bum. I know from this post, I wanted the boys to work on their aim, but I meant it a little more anatomically than athletically.

When Grant got home from school today, I explained that the plumber had been here and fixed the toilet.
Me: Guess what? He found something in it.
Grant: A tennis ball?
Me: Yes. How did you know that?
Grant: I guessed?
Me: Uh- huh. I see. How did the tennis ball get into the toilet?
Grant: I don't know?
Me: Yes you do. How?
Grant: I think I don't remember.
Me: I think you need to remember.
Grant: Ummm. I THINK I was going pee and I had the tennis ball in my hand, but I set it down on the edge of the toilet and I think it probably fell in. Then I finished going pee, I think.
Me: And you flushed the toilet with the tennis ball in it?
Grant: Yes, I accidentally forgot to get the tennis ball out first.

So, I explained that accidents happen and it is gross when things fall in the toilet, but he should have told us this happened because we could have saved a lot of time and money if we knew what the problem was. If he ever drops something in the toilet again, he needs to tell us RIGHT AWAY and NEVER FLUSH IT FIRST.

So, does anyone know the going rate for 5 year old child labor? I have $85 owed to me.

Lessons learned from this: If you want to save some money and not call the plumber after your toilet does not respond to plunging and snake routing for declogging, you can wet-vac the water out and find the lodged item. However, having someone else suction dung-water out of my toilet to find a feces covered tennis ball is worth EVERY BIT OF $85 for 25 minutes of work. EVERY PENNY.

KEEP BELIEVING

home again, home again, jiggity jig...

Home again.

From the hospital again.

Gavin was discharged last evening after his second dose of antibiotics. He improved most of the night on Tuesday night and into Wednesday. He began running a low grade fever on Wednesday early afternoon which responded very well to Motrin. He also began eating and drinking. And then he began peeing. A ton. Like every 45 minutes. It was as if his little body finally said, "okay, I believe you will keep giving me a drink, so I will now release this fluid I have been holding onto for the last three days." and the floodgates were raised.

I gave him Motrin last night as a precautionary measure to ensure he didn't wake with a high fever again. He is keeping everything down now and really appears to be on the mend. I am keeping him home from school for the rest of the week so I can watch his breathing and listen to him to ensure the fluid is not building up. I also just want to keep him adequately rested for another few days. We follow up with his pediatrician this afternoon.

My Mom is going home again today. We were going to have a house full of people this weekend (my family) but I cancelled. I cancelled as soon as I realized things with Gavin were pretty serious and now I am glad I did. We just need time to be a family. A family of 4 with no doctor's appointments or hospital stays or houseguests. We need to be normal. Well, as normal as a family of 4 fighting cancer and pneumonia can be. As normal as a family of 4 who have not all slept in the same house for 7 nights can be.

Brian is doing pretty good. He is having a lot of issues and discomfort with his joints. The steroids can cause this and we are tapering off the steroids, but we are thinking we might be tapering too fast. It is always difficult to know if the weakness is from the cancer and the brain or from other causes. This is difficult to manage.

Brian's oncologist appointment on Wednesday went well. Gavin was doing okay, so my mom stayed with him while I left the hospital for the first time in 54 hours. Plus, he was a grump (rightfully so) and I needed a little break from him. At the appointment, it was decided to repeat the scan in about a month and determine what chemo to continue based on those results. The chemo he was taking and we are considering continuing inhibits healing, so whenever there is a surgical procedure, the chemo is discontinued for 3-4 weeks prior and 3-4 weeks after the procedure.

Then I picked up Grant from school since I had not seen him since Sunday at bed time. I missed him terribly, and he needed his mommy. We went to the hospital together and visited his grumpy brother. We got an ice cream and went up and down elevators, explored the outdoors on a walk and raced each other in the walkways connecting the building.

Still, today we have an appointment for Gavin and Brian has an appointment on Friday to get his stitches and staples removed.

I am tired. Tired of hospitals. Tired of issues. Tired of making appointments. Tired of cancelling and rescheduling everything else. Tired of no routine. Tired of worries. Tired of illness. Tired of choosing which member of my family I spend my time with. Tired of deciding where to sleep. Tired of germs. Tired. Tired. Tired. Tired.

This weekend we are doing nothing. We are going to be a family. We are going no where. We are making fires in our fireplace, playing games, cooking our own meals, doing our own laundry, cleaning our own house, going to church. Because we can. Because we want to.

KEEP BELIEVING

good news and bad news

Okay, Where to start.

First of all, Brian is doing great. Just great. He gets stronger each day and is improving quickly. He gets stitches and staples out on Friday. We see the oncologist tomorrow to talk about further treatment. His speech is improved and he is walking better each day. In fact, just today, he walked the corridor of the hospital there and back twice.

The hospital, you ask????

Hospital. That's right.

Sunday night, Gavin lay in bed with a 103.8 fever not responding to Motrin or Tylenol. He lay there shivering and trembling and shaking. At 2:30 am, I had enough, and I left for the ER. Thank God I had asked Jan to spend the night at our house in case of an emergent situation because an emergent situation we had.

I knew this was beyond a bug. He was sick. Very sick.

In the ER, he was given a bolus - a large amount of IV fluid quickly. He responded well and got another one. It took two tries to get an IV because he was so dehydrated. I could not get him to drink much on Sunday. Mom said she had the same problem most of the weekend. He ate almost NOTHING since Wednesday night. They told us they were calling our Pediatrician to follow up with him the next day and were sending us home since Gavin kept down the juice and crackers and could continue to hydrate at home. They took out the IV, so naturally, about 5 minutes later he vomited everything and they said we needed to watch him for 23 hours.

For the next several hours, Gavin underwent an IV infusion of a potassium mixture to bring back up his electrolytes and hydrate more. HIs urine and throat were tested. He had labs drawn. It was assumed this was a nasty stomach bug. He was given Tylenol and Motrin IF his fever spiked. Which it did. However, Friday through Monday he was FINE from about 10:30 to about 3:30. At 4:00 on Monday while we were here, his fever spiked to 103.2 again and they said they would keep him overnight - they were just about to let us go home, I guess. Anyway, all through the night last night, unless he was sleeping, Gavin complained of tummy and back pain. He would tremble and shiver head to toe and moan. The only relief he had was when his body would succumb to exhaustion and he would sleep. It was a long night. At about 1:00 am, his nurse noticed he was dripping with sweat, came in to uncover him and noticed his IV was falling out. So, he was poked for a FOURTH time to insert another IV. I sure hope this one holds out. He hates the pokes as he says.

This morning, his pediatrician came in and said it was pretty obvious by his trembling and his fever that will not break this is more than a stomach virus and is some sort of infection. He ordered more tests that probably should have been done the day before, but what's done is done. The test that FINALLY came back positive was the chest X-Ray. Gavin has pneumonia. He is now being treated with a broad antibiotic and an additional antibiotic in case it is a sort of atypical pneumonia. The good news is that that it appears so far the pneumonia is not growing. Gavin is not having problems breathing and isn't coughing a lot. The cough really just started last night. The pediatrician said this can happen with pneumonia - once the body is hydrated, the fluid can build up.

So, today, he spent a lot of the day trembling and uncomfortable. He appears to be doing a bit better tonight. I pray the antibiotics continue to work and other drastic means are unnecessary for his recovery. Please pray with me.

I had no idea how painful it was to watch your child in pain. I pray you never do.

I will write more when I have time.

KEEP BELIEVING

home

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

surgical gift

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

Next, they make a small incision behind the ear and insert a valve attached to the tubing. The valve ensures the fluid will only flow FROM the ventricle and not back to it. Lastly, an incision is made in the abdomen. This is where the tubing ends. It empties into the abdomen cavity. All the tubing is under the skin.

Brian's biggest issue right now is coming out of anesthesia which is so far not a big problem, but just causing him to be a bit groggy. Also, his abdomen is sore. The incision in the abdomen is larger than we had expected and there was some maneuvering of the tube at that location, so he is tender.

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

Surgery is occurring today at 4:00 pm.

That is all.

Have to run.

KEEP BELIEVING

surgery...... Saturday?

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.

Then I was told to talk to the head nurse. So I explained 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, 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.

Then I was told I could speak with a resident if I wanted. I said yes. They need to understand the decisions they make and the things they do impact human beings. Human beings with emotions and families and lives who are not working currently because of illness, so while this may be their job - this is our life. And then I told him 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, 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.

And I was told all I had to do was ask a resident and I would have had an answer. And I was even angrier because if that is the case, why isn't the resident the one coming in and telling us the news? Why are they not more accessible? Why do they make the nurses do it? And why did I talk to so many freaking people today to get an answer to something that should have been a no brainer (no tasteless pun intended)

AND? AND! The schedule is full for surgeries that we planned for weeks in advance. So, this really should have been known and communicated.

We have been through the bureaucracy of teaching hospitals so many times. What I was trying to get across is that the too thick layers of communication should be transparent to the patient instead of fresting on the patient. It is not right. And I am tired of living through it. I am tired of dealing with medical language and terminology and procedures and delays and knowing more than a common person should know and knowing more than the stinking interns that come and poke around on my husband know and repeating myself more times than I do to my own children and getting no sleep and dealing with crap I shouldn't have to. You know?

And so my frustration now lies with precious moments we lost as family and friends and an entire DAY of time lost now while Brian sits there awaiting scheduling. Time that cannot be replaced. Time that has Brian surrounded by a medical staff and pokes and prods, and pupil checks, etc.

One thing I did manage to accomplish, though, is convincing the doctor to back off on checking Brian's vitals, etc. tonight. He is not the typical patient. We are beyond the point of unnecessary diagnostics and monitoring. Let the man rest. He agreed to this after I told him that "sorry just wasn't enough sometimes. The lack of communication was avoidable and that makes it more difficult to excuse."

By the way, I kept my composure very well and was able to calmly and cooly explain in a very rational voice and tone to each person our situation. I truly believe they all feel bad about what is going on. But, it doesn't mean I don't want to tell them to stuff their sorries in a sack. (the resident anyway. I actually feel sorry for the nurses.)




And yes, I will be calmer tomorrow. I have to stop writing these moments after these conversations. But it does give you a bigger glimpse into our lives. And why we wanted to avoid the hospital as much as possible at this point.

KEEP BELIEVING

a shunt

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

pressure (edited with update)

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

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...

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Today history is made with the election of a new president-elect. Not the man I chose, as you know, but I don't care. I honest to God, COULD NOT CARE LESS.

My husband is dying in front of my eyes.

I have to call hospice today to get some professional help.

Walking is becoming increasingly difficult for him, let alone showering, dressing and other functions most human beings, including myself, take for granted every day.

He is sleepy all the time.

His speech falters more every day.

He knows he needs to have a conversation with his boys about his departure from this earth while he still can.

I have to take the boys to the park or somewhere alone today and tell them that their daddy is dying, that it probably won't be all that long now. I have to field their questions while maintaining my composure ensuring them of their own safety and stability.

And I have to turn on the TV and be bombarded with how inspiring Barak Obama's speech was or how history is made or whatever.

Know what inspires me??

This:

This is a true hero. He may not get camera time, but he is a better man with more strength, dignity and character than ANY single person who ran for ANY office yesterday.

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progression

Brian's condition has begun to deteriorate further. It is difficult to measure and grasp a gradual change when one witnesses something each day. I equate it to your children's growth. You see them each day, so you don't notice sudden changes in their facial structure, their height or their build. Then you see a friend you haven't seen for a few months, and they point out what has been so obviously occurring right in front of you.

Brian is weakening. He is tired more often. He is more irritable. His headaches still come and go, but when they come, they are vicious. The pain is nearly unbearable, but today we were prescribed a medicine that I believe should do the trick with alleviating that pain. Also, he has begun to have mini-seizures. He sort of looks off to the side for a few seconds, and sometimes his head bobs a bit, or his eyes roll back in his head. The mini seizures just began this weekend, but he had one today in the doctor's office. He is gradually getting less stable on his feet. He started to walk slower last week. He then began to brace himself on walls and furniture as he walked. Today, when we were at the doctor's office, he requested a wheelchair because he did not feel steady standing or walking.

Brian's parents and I have begun to educate ourselves on what happens next. How will Brian progress? What should we expect? He is having another MRI tomorrow. In Brian's current state, he feels too weak and tired to do chemotherapy. If the MRI shows further rapid progression, he will most likely be finished with all treatments and be made to feel comfortable at home. We are trying to set ourselves up to handle the situation at home. Brian's dad is getting a wheelchair today for days when Brian is weak. Unfortunately, we do not have a mainfloor bedroom or full bathroom. Therefore, Brian's dad is also investigating a lift for the stairs.

According to the doctor, if this is tumor progression causing Brian to become more symptomatic, which seems likely at this point in time, we can expect Brian's symptoms to become worse - his right side weaker, his speech worsening, his stability becoming unsteady, and a tremendous amount of fatigue, sleeping a lot. The seizures and the headaches should be able to be controlled with different and increased medications.

I have begun talking to a counselor about life at home - discipline, what and how to tell the boys, visitors, help, etc. I feel good about most of the choices I have made so far and appreciate all the help I am now ready and willing to accept.

In the end, right now, I just want to enjoy each good moment, spend as much time as possible with Brian, and take care of my family the best way I know how to do.

KEEP BELIEVING

Brian's Birthday

HAPPY 36TH BIRTHDAY TO THE MAN OF MY DREAMS

my hero


my inspiration


my touchstone


my confidante


my best friend


my balance


my companion


my partner


my better half


my pride


my everything


my encourager


my joy


my support


my here and now

my sanity


my provider


my breath of fresh air


my LOVE


my reason to ....


KEEP BELIEVING