Facing life in the aftermath of losing my boyz' father, my husband of 12 years to a brain tumor in 2009. Continually adjusting ourselves in this new life of ours. Always journeying down an unfamiliar path. Yet we KEEP BELIEVING for our future.
Prayer Requests
For our transition to the St. Louis area to be smooth and for all of us to feel a sense of belonging again.
Renewed emphasis in our spiritual/prayer life
Brian and the boys, October 2008
People who love me! (or haven't told me otherwise)
I am: Widow, Mother, Christian, Confused, Silly, Serious, Logical, Thoughtful, Irrational, Role-playing Father, And figuring out my place in this world again as a single mom of two boys after losing my husband of 12 years to a brain tumor in March of 2009. KEEP BELIEVING used to pertain to believing in Brian’s physical healing. Now it is a family motto – that changes with each season of our lives.
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....
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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...
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.
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.
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.
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.
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.
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.
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.
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.
Gavinese translation: ...the fish because the fish was dressed like a person and it was crazy to....
I'm talking about this kind.....
Dear tooth fairy,
