1 year ago

Been flooded with "1 year ago" thoughts the last month.

Like the last soccer game Brian was ever able to attend. I don't remember it, but i know it was in February some time.

Like the last time he left the house - it was to go to Buffalo Wild Wings, enjoy a couple microbrews and some wings, and his entire family - brothers, wives, parents, nephews and nieces - were there. It was so windy he could barely walk in the door. He could barely walk anyway. That was March 8, 2009. It was also the last night we would ever sleep together.

March 9, 2009 was the last morning he ever woke in our bedroom. He came down the stairs, went to sit in a kitchen chair, fell, and never walked up or down those stairs again.

March 9, 2009 was the first day of the week leading up to his death.

It was the strangest week of my life. So many blessings. So many regrets.

I can't stop thinking about it.

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something that bugs me

Some days it bothers me that everyone, myself included, trivializes what Brian endured as though it were MY cross and burden. This may not make sense, but it seems as though Brian's illness is often equated to a pawn in the chess game of MY life rather than his own, like his slow decline and his eventual inability to get around and speak was something I had to endure. Just because he died, his illness was still HIS illness. How he handled it and how he carried on despite it all can never be discounted. I guess part of this bothering me is how quickly everyone, including myself, seems to forget Brian. I worry his mark on this earth will be falsely credited to me.



Does this make any sense?



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just a general update

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

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

GAVIN:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Brian's journal

Dear Brian,



Today, as the boys are in school, I have opted NOT to run needless errands, go to the gym, or spend time away from home. I am taking some time to gradually work my way through more of your things, deciding what to keep for the boys, what to give to your family and friends and what to simply discard. [And I have decided that the morphine (that I had forgotten was there) is going back to hospice to destroy legally.] Upon going through your nightstand drawer, I found your old journal. Journaling was something that you wanted to make a priority when you were first diagnosed and got over the initial shock (although did we ever truly get over that shock?).



It is in finding particular reminders that I am both overjoyed and deeply saddened. These reminders are the ones that bring you into action. The pair of paint stained shorts you wore when you did projects strike an emotion and memory in me greater than a still photograph. Your hockey jersey with the red paint stain that looks like blood and the boys will forever think insist is blood, is more jolting than the State 1st Place trophy-plaque. Coming across your cigar case with a lone forgotten cigar in your golf bag sparks more in me than the photo of you smoking a cigar with ashes longer than the cigar. Seeing your words written in a journal reminds me that you were here on this earth physically writing and thinking and feeling.






Your last journal entry was in 2000. I wish so much you would have continued to write in it. I love reading your thoughts and ramblings. You wrote exactly as you spoke. And you spoke as you lived. Not many people in this world do that. You always did.





Here is your last entry that brought me pride and tears and longing:





April 6, 2000


The secret to long life is to keep your soul happy. If your soul is happy, he'll want to stay in this world. One of the best ways to make your soul happy is to make someone else happy.








Brian, I think this is so profound and beautiful and simple. It is one of the most accurate statements I can think of to describe you. And the best part is that is came directly from you and was the last journal entry you ever wrote. And it was 9 years before you died. So, I know you won't mind that I am sharing it on this blog for the world to see. It is something you would have wanted to tell everyone and anyone who was struggling with contentment or health or other issues. I do believe you left this world with a happy soul. Why your soul didn't want to stay, as you wrote, I cannot answer. Perhaps because it was so happy and your body was failing enough that it was ready to flee back to it's creator? I don't know, but I know you were always a happy, empathetic, and compassionate soul. So many people told me while coming to visit us those last few months before you passed that despite our situation and its apparent grim outlook, our house was not a sad place. It was still a place of peace and joy. Brian, even in your last few dying months, you made others happy just as your journal entry stated - the most remarkable testimony to who you have always been!





I love you, Brian. I miss you.





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my darkest secret...confessed

Dear Brian,

Did you know that I stopped believing you would be physically healed on earth a long time ago? I stopped believing it in April of 2008 when we had to start a new chemotherapy after the Temodar stopped working. In fact, I think I stopped believing it when you were diagnosed with the Grade IV in 2007.

To what extent?

To a strong extent.

I tried to stay positive like you always did. I tried to share your enthusiasm for total and complete healing and restoration. I tried, but I failed. I failed because I watched as your boys learned to stop asking you to take them on a bike ride after you once tried and fell. Grant still talks about it today. I stopped believing because I saw that you could barely walk across our own lawn, let alone play soccer in a field with the kids. I stopped believing because I selfishly would wallow in pity when you would talk about how you needed to exercise to restore your strength and your right side function, yet you couldn’t even cut your own steak or tie your own shoes. Instead, I believed it was an insurmountable mountain to climb. You believed you could improve, Brian, but I stopped and I am so sorry.

I am so tired of hearing how strong I am, how my faith inspires. I am merely a flawed human. I didn’t believe you would be healed on this earth. I put up a façade like I did, but I didn’t believe it. I prayed for God to give us as long as possible, but I didn’t pray for total healing. I asked others to do it for us, feeling incredibly hypocritical all the while.

Do you think people would still think I was so inspiring if they knew that last fall, as I was buying you some vitamins, I SERIOUSLY contemplated whether to buy the 180 count or the 360 count, thinking strongly you may not be here in a few months? As if that lousy, stinking $8 means a damn thing right now. Sometimes, though, I wonder if my lack of faith and that blasted $8 contemplation sort of killed you. It haunts me.

Do you think people would still think I am admirable if they knew I discouraged you from buying an expensive pair of dress shoes in the fall? You see, I saw you deteriorating. I saw it slowly happening, but you didn’t. I saw it and in my gut, I knew the next test result was going to be the one that told us to stop treatment, and there would be no reason for those shoes. I didn't want to see those shoes sitting in your closet reminding me of your hope and my lack of it. You never bothered to bring up the shoes again. Did you forget or did you know I didn’t think you would need them?

Do you think anyone would still respect my strength if they knew I avoided you the last couple weeks of your life? I turned over the night shift so I could still sleep and spend the days refreshed going about life. I went to girl nights out. I volunteered at the school library and spent hours on the computer and in the basement working out while you were slowly dying in our family room. I even went to Wal-Mart just 30 hours before you died for absolutely no reason at all. I was obviously very distracted that day as this is what I saw when I looked down in the store noticing that my right leg seemed shorter than my left.



What I wouldn’t do to have one more day with you. What I wouldn’t do to reverse the clock and spend every single moment of every single day of the last few months with you. Every single moment breathing you in and memorizing your every feature. Every single moment holding your hand and watching whatever TV show you possibly wanted to watch. At the time, I just couldn’t watch my knight and my hero unknowingly decline and die. How incredibly selfish of me. It is my own tragic loss.

You see, Brian, I was not so strong. I was not so faithful and not so vigilant. I was weak and faltering and unbelieving. I am sorry. I am SO SO sorry. Sometimes I wonder if my faith had been stronger, would it have made a difference? Was this a test of faith that I failed? Am I failing now? Am I partially responsible for your death?

I miss you, Brian. I love you.

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night shift

Last night, Brian was awake again... all night. He slept from around 10am to 2:30 or so on Saturday afternoon. Up all night Saturday night. He slept again on Sunday morning from 7:00 to 11:00. However, we did not give him any more of the Ativan/Lorazapan, so he is no longer having the jerking motions and hallucinations and sudden hanging-on-for-dear-life urges. So, when he is awake, it is a bit more peaceful.



We gave him some more Oxycodone to see if he would sleep again as that seemed to do the trick on Saturday morning. It did nothing. We have not tried the Haldol yet as we really would rather him sleep at night instead of during the day. We may try tonight if he does not sleep later.





Today, he ate almost nothing. Same thing yesterday. He is drinking about 20-40 ounces per day. He is outputting WAY more than that, so I am not really sure what that means. One thing that could be attributing to that, though, is that his shunt from his brain would be draining the excess spinal fluid into the body which eventually needs to be voided.





Last night, Sean, his brother, and I bathed him. It was challenging, but we got it done. Brian is pretty much totally unstable on his feet at all now. He could not stand without total support. He felt like he was falling a lot. I had to lift his feet to get him into position while Sean would move him to and from the commode to the bed and back. He lays very sideways in bed as his sense of balance is distorted, too.





His speech is pretty poor. His voice is quiet and he makes little sense. The beginning of the conversation is okay, but he trails off to something you cannot understand or cannot follow. He wants so much and tries to be a part of the conversation, though.





He has been vomiting quite a bit, too. It is definitely worse after he has been readjusted in bed or if he has been up and down (like after the bath.).





Brian needs constant supervision as he often tries to get out of bed. I don't think he would succeed as he lacks the strength, but he often states how he is going to go to the bathroom, to bed or to take a shower while pushing his covers to the side. We have determined that the night shift is exactly that, too - a watch and not a sleep session unless he starts to sleep again.





I slept the whole night through last night as Sean was here and I knew he would know exactly how to handle Brian. I was AMAZED this morning when Sean informed me that Brian did not sleep at all and talked the whole night through.





The boys are in St. Louis with relatives having a grand time. In their first afternoon/evening, they had a birthday party, an Easter egg hunt, a dance session on the driveway to Crazy Frog, a sidewalk chalk fest, cake, party favors and a game of Ghost in the Graveyard. Today they went to the City Museum, then played Light Sabers and swords outside this evening. My family is giving my kids exactly what we need right now while Brian's family is taking care of all our needs on the home front.





Doesn't this picture of the group celebrating life and birth with my boys melt your heart?

It does mine.

The only thing missing is their Mom and Dad. That breaks my heart.

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Eyes Wide Open

Since my last post, Brian has become increasingly confused and fidgety. He had not slept at all until about 9:30 this morning. That means from 9:30 on Wednesday morning to 9:30 on Saturday morning, he had slept a total of about 5 hours.

Upon hospice orders, we gave him Lorazapan/Ativan to help with restlessness. It appears after two night of this and increased doses of Lorazapan/Ativan, he is having an exact ADVERSE reaction to the drugs. Within a half hour of the dose, he is even more jumpy, fidgety and agitated than before. An increased dose simply exacerbated the problem, exponentially. We are now moving to another drug called Haldol. See ya later, Ativan.

Some very loving and caring relatives stayed the night last night so I could sleep as I was supposed to take the kids to their soccer games and to meet my mom to get the kids to St. Louis today. Well, when I realized Brian hadn't slept at all, I woke around 4:00 and laid with Brian, praying for peace to come over him. It was as if every time he would start to fall asleep, he would jerk and jump and convulse a few times and then his eyes would roll and he would start talking again over and over again.

Yesterday, Brian had a sudden surge in appetite. He ate a hamburger, half a milkshake, some sausage, an egg, a piece of toast, a pancake and some vegetables. He also drank quite a bit.

As of right now, my boys are in St. Louis being spoiled rotten by aunts and uncles. There is a birthday party scheduled for Grant and I truly believe this is the best place for them. I can't believe how much I relaxed and how free I felt knowing they were with people who know them and love them and are keeping a constant eye on them for a few days. It is liberating for me, so thank you to those of my family that I know desire to be with Brian and me, but are filling the needs of my children which is therefore helping Brian and me. I hope you have fun doing it.

Right now, Brian is sleeping peacefully for the first time in a few days. Tonight his brother is going to stay over helping out. I intend on cleaning up Brian and changing his bed. It is a two person job and a complicated one at that.

Well, that is about it for now. I feel terrible that I don't have a birthday post for Grant. I have it written, but have pictures that I need to insert as well. Maybe I will get it finished later.

I apologize this post is a bit all over the place. The last two days have been exactly that - all over the place.

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sleeeplessness

Brian's decline seems to continue.

Last evening and night he had several issues with vomiting. He is drinking less and not outputting very much. Not to be too graphic, but he only pees about twice a day and hasn't had a BM since Sunday. Also, since Sunday he has only taken in about 8-20 ounces of fluid per day and about the equivalent of one package of Ramen noodles or half a sandwich in any given day. I offer every and anything to him as does anyone. He is just not interested in food or drink. For Brian not to drink shows serious signs of a change. He normally drinks about 64 ounces of fluid a day.

Brian is becoming weaker and less stable. He can not walk even a few steps anymore. He needs help getting in and out of bed and his chair. We take the wheelchair to and from the hospital bed to the La-Z-Boy now. When he does eat, it is in bed or in his chair. He no longer attempts to make it to the table.

Last night he became incredibly confused talking about the "help desk" at one point in time. Also, he and Sean and Murph - his brothers - were doing something related to cash. At one point in time he was doing a project for which he needed scissors. When I told him I was not getting him scissors, he got irritated with me and told me to stop talking to him like he was stupid. I felt bad and suggested he work on it later instead.

Brian seems to be fighting sleep like he did this night in February. I have given him a few different drugs to attempt to assist him with this. It seems like EVENTUALLY, when he finally stops fighting it, they work. He was up most of the night last night very restless. Trying to get out of bed a couple times, asking for his IPOD, trying to control his IPOD with the TV remote control, turning the TV off and on, looking around for the source of what he thought was a strange noise, etc.

He finally fell asleep around 10:30 this morning.

Brian's parents have spent the night every day this week. Brian's Aunts and Uncles are coming to the rescue this weekend while his parents attend a funeral. I have decided to send the boys to St. Louis to play with some cousins and aunts and uncles in lieu of staying around here. This is a tough decision as I do not know what phase Brian is entering and how much longer he has. Still, I think, with it being Grant's birthday and a couple days off school, they can have a nice time being spoiled and distracted in St. Louis. I pray it is the right decision.

Everything in me tells me this time is it. I know there is no way of knowing for sure. I spoke with his hospice nurse this morning to inform her of Brian's current condition. She suggested increasing some doses of Lorazapan which can help with vomiting and restlessness. The suppositories will also be effective in managing this. She stated, however, that we need to be prepared that Brian's confusion with his bodily function needs, his instability, his restlessness, his weakness and his lack of appetite are all signs of his entering a final stage of life. Not that we haven't experienced this before, but this week we have seen a continual decline in Brian unlike the other times.

Please remember that Brian loves to hear from you - even if you have written in the past - especially fond memories:

brianoneill1972@yahoo.com

I don't know how to creatively end this post.

Please pray for us. I just want the peace and love of Jesus to surround us -ALL of us - including every one of YOU - in this time.

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weak and weak

The last blog entry I wrote, I did so in a hurry and did not proof it, or 'do my REVISION stage' as Gavin calls it in his own writer's workshop. When did first graders learn about REVISION??? Anyway, as I re-read it, I had to laugh at my own haste and the following sentence:

'We have a suppository anti-nausea and I would like to try it, but Brian is not ready. I think we may do this when he wakes tomorrow.'

I would like to clarify, that I, indeed, meant I would like BRIAN to try the suppository and not myself.

By the way, he did and I think it worked.

Brian is doing much better today. He has not had any vomiting fits for the last day and a half now, which is, naturally encouraging. However, he is incredibly weak. He is quiet and a tiny bit withdrawn. He is upset regarding all the "fussing" over him - all the hovering when he gets up to walk to and from his chair, all the offers for food all day, all the "are you doing okay's?", all the hullabaloo. I explain why - he hasn't eaten much, he just about falls when he goes from point A to point B, he is weak, etc. He understands, but isn't happy about it.

Many of you asked about more hospice help. Until Brian can come to better terms with what is progressing and his weakness and instability, I don't want to bring in others to do what I can do. He WANTS to use the stairs and share a bed. He WANTS to take a shower. It kills him that he cannot. I don't want to bring in someone else to take care of those few things that I can do for him. I can clean him for now. We have a hundred family and friends that can come and spend the night to help out. We are going to take up those closest to Brian that love him the most before hospice help for such intimate functions. There may be a time when I need that assistance, but right now, I want to help Brian ease into this transition with as much dignity as possible. Does that make sense?

The boys are off school Monday and Tuesday, and we were supposed to try to go to St. Louis for an extended weekend. I do not see that happening unless Brian shows considerable improvement. His movement in any given day consists of getting out of bed and walking to the bathroom. Then he walks to the family room to watch TV. Then he walks to the table to eat lunch. Back to his chair. Back to the table to eat dinner. Back to the chair. Up to go to the bathroom and bed in the evening or night. That is it, and it takes a lot of effort and assistance for that to happen. Doing all that in another city doesn't appeal to me right now. Putting him in the car for 3 hours by myself isn't something I am willing to tackle given his current state. I would much rather be at home where we have what we need in case of emergency. Although, hospice has said they would give us support in any city we chose to visit, and we are coordinating it just in case. If it is something Brian feel passionate about, I will not deny him that and I will figure out a way. I know there are many that would assist.

Grant's birthday is Saturday. We are thinking of sending the boys to St. Louis anyway so that they can have a distraction and some time away from all this. I am not sure exactly how we are going to handle the timing of all that yet. We are waiting to see how Brian is doing each day.

Well, once again, the time has escaped me. And my typing fingers are keeping up my sleepy hubby. I will write more tomorrow.

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dizzy and sick

Brian awoke on Monday morning and vomited right away like he has been doing every morning for the last week. Most days this lasts until around 11 or earlier. Then he is fine. He has been getting a tad weaker - probably due to not eating much and small progression. However, on Monday, he suddenly lost his balance around 9:45 and vomited all day - about every 20 minutes until around 3. Then he stopped vomiting for a few hours until we moved him to the hospital bed around 8:30. He was unable to walk without significant assistance and even then, we were pretty much holding him up. There was no way we were going to get him up the stairs. He was not happy about the decision, and after a few caddy remarks, he agreed - JUST FOR ME. Whatever. I will take it.

Anyway, he began vomiting again around 8:30 and continued to do that every half hour until around 10:00. He fell asleep around 10:30 and slept most of the night. I lifted both the bed rails, put the bedside table next to one side and slept on a mattress next to him on the other side. I did this so he would not unexpectedly try to get out of bed in the middle of the night without my hearing him as has happened in the past when he was not in a good condition. So, I slept rather fitfully afraid of the above circumstance occurring. He wretched and coughed a couple times throughout the night, but slept pretty well, I think, all in all.

This morning, he woke and was extremely dizzy getting to and from his chair. He has not had any more to eat than 1-1/2 Ritz crackers since last night. He feels like he is going to vomit just about as soon as he takes a bite of something. Naturally, this makes him weaker. He vomited twice today as well. It is nothing more than stomach bile and whatever water he recently drank. We have a suppository anti-nausea and I would like to try it, but Brian is not ready. I think we may do this when he wakes tomorrow.

One big issue right now is getting him cleaned up. He has not had a shower or shaved since Friday due to his condition. He would like to, but he is unable to get up or down our stairs to do so. Even if we did have a way to transport him up and down the stairs, the wheelchair doesn't fit through our bathroom or bedroom doors, so no matter. I guess I will need to sponge bath him as best as possible soon.

He hasn't been out of his chair for any reason as of yet today, so I have no idea how his stability will be tonight.

And now I just looked at the clock, realized we have to leave for soccer in 30 minutes and I need to feed the kids, so that is all for now.

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overdue

Realizing that I am overdue for an update on Brian, I apologize for not getting to this blog lately. I tried to go off my medication these past weeks to see how I did. Well, combine that with a certain time of the month, Brian's condition, fighting children and bleak weather and you have a recipe for disaster. I should have known. Now that I am back on my medication, I am going through getting my levels adjusted which includes headaches and fatigue for me. I am getting along better now.

But, enough about me, I know you come here to read about Brian.

In the last week, Brian has continued to get just a little worse. His speech is hit or miss. His mornings are awful - he is dizzy and often has vomiting spells. He has fallen three times in the last week. He is getting gradually more unstable and slower. He is very tired, but doesn't really nap. His memory is awful. He must ask me 20 times a day what we have going on that day/evening. He does not remember many recent visitors, but does remember some. He pretty much eats two meals a day still - one small and one microscopic. He doesn't really snack, either. And he is still stubborn as hell. Where 'stubborn as hell' apparently means 'stubborn as his Grandpa(s)'.... 'or Dad'.... 'or nephew'.... 'or Mom' depending on whom you ask.

One thing that brings much joy into Brian's life right now is reading the emails people are sending to the account we set up for him. His brother, Sean, brings them over once a week and Brian lights up when he hears from a total stranger that is touched by his courage and faith. He laughs and nods when he hears from an old friend relaying a particular memory or reliving old times. He delights in seeing pictures from friends and family of old times or their current families and locations.

Please keep sending those. Seriously, Brian's long term memory is not affected, so he takes great pleasure in reminiscing since he knows his short term memory is failing him.

brianoneill1972@yahoo.com

When I get more motivated, I will write something profound again. I know you are all dying for my wisdom and wit again.

KEEP BELIEVING

grace moments

Quick status report: Brian has been having his morning vomiting issues again since Tuesday. Then he eats a small lunch and microscopic dinner. He has lost 20 pounds since the 1st week of January. He is having continued weakness and some morning dizziness. Other than that, things are about the same as they were last time I wrote.

I thought I would take this time today to remember some grace moments that have occurred in the last couple weeks as Brian has continued to slowly decline.

A couple of weeks ago, our boys were off school for Lincoln's birthday. Not PRESIDENT'S DAY which would have allowed for a nice three-day weekend, but LINCOLN'S BIRTHDAY which falls on February 12- a THURSDAY. At the time, I was a tad annoyed by this, but we do live in Illinois, so I understood the emphasis on Lincoln. ANYWHO!!! As a result of the Thursday holiday, Brian and I had a lazy morning with the kids watching cartoons and hanging out in our PJ's. We had pancakes for breakfast for which we usually do not have enough time. Then, we went out to lunch just the FOUR of us for the first time in well over a month. We attended a movie - Coraline which I would rename - AWFUL-INE unless you are tripping acid while you watch. But, the kids said they liked it, so I guess that it all that matters, assuming they were not tripping acid at the time, naturally. We shared our popcorn and our sodas and I even splurged on a box of overpriced movie theater candy which I NEVER do. We had a great day. Had the kids been off Monday instead for President's Day, based on what happened on Sunday, we would not have been able to have this family day. It may have been our last true family day where we were able to leave the house together and make a day of it. I cherish the day - Coraline and all.

Secondly, the Friday before Brian had his drastic change, we went to a local bar in town to hear a friend of ours play in her band. Their playlist was all the type of songs that Brian and I love. They dedicated every Grateful Dead tune to Brian. While at the club, we came across several friends from our neighborhood that were out that evening as well to hear Jane's Cellar. Brian and I had hoped to sit in a booth, but at the time, we were placed at a table and made due. The table situation worked perfectly because all of our friends were able to pull up chairs all around at surrounding tables and join us. It was a great night and one that I will forever cherish watching Brian rock out to some Doors, Dead, Beatles, Alanis Morissette and many in between considering the next night we had to leave our dinner early due to Brian's condition.

Also, the weekend that Brian had all his problems was a weekend originally planned for a visit from an aunt and uncle. They chose to come the weekend prior for no particular reason which allowed my sister and parents to be here instead. Thank God for my sister who was quick on her feet getting Brian out the door and into the van when I was a blubbering mess. She also had the insight to suggest calling hospice when Brian began to decline at home. Additionally, she was logical enough to have me reschedule the delivery of the hospital bed from 3 am to the next available time the next day when the house was awake. Duh!! Lastly, with little sleep under her belt, she still rallied all the boys and took them to church in the morning to get them out of the confusing house. AND, because my parents and sister were here in lieu of my aunts and uncles, my mom simply stayed with us the entire week to ensure things ran smoothly. She beautifully and gracefully filled every gap that existed last week. I was so unaware of that until her absence this week reminded me. Having my family here during that time was a blessing I didn't grasp until just these past few days.

When we went to Alexander's for dinner the night Brian "freaked out" on us, we had specifically requested a reservation on the main level. The main level of this very old downtown warehouse-ish steakhouse is actually UP one level from parking, but is accessible via a ramp. You have to go in and out here via the main entrance. The manager immediately pulled us aside and explained that they had us at a table on the lower level. This was really not a problem because Brian was able to make it into the building just fine, so he could descend the flight of stairs to the lower level tables. The manager also assured us that when we were ready to leave, he would temporarily shut down the emergency exit alarm on a door nearby that lead to the main parking lot if need be. This turned out to be the largest blessing of the night. Brian was unable to leave the restaurant walking. My Dad drove to Alexander's with the wheelchair (which I forgot to mention for him to bring, THANKS MOM) and we were able to get Brian out the side door without parading him back through the main entrance. It was a quick and easy escape.

Kris, Adam, Brian, me and Mindi just before we left Alexander's Feb 14, 2009

I truly believe that finding grace moments in the midst of this horrific struggle is what allows me to remember that God is in control. He is working things according to His purpose even when it doesn't appear so.




I listened to a sermon once about Job. One of the things that stuck with me beyond anything else I have ever heard in my life was that even in the midst of a horrific struggle, there are spiritual developings happening parallel to us that we do not see and cannot possibly comprehend. I remind myself of that constantly. Remembering that God is God in the good and bad times is the truest test of faith. Satan wants nothing more than for me to think that God has abandoned me in the low times or that the I am responsible for my own high times because he knows that separate from God I am powerless. He will use whatever he can to get me to rely on myself. God knew what Job was going through and even allowed for it to happen to Job because He knew and wanted Satan to know that we as humans worship and trust in God because He is God - not because we have possessions or fame or success or health or prosperity.





I don't have God's perspective on what is going on in my life. I don't want it either as I am NOT capable of comprehending it. I can only honor Him by trusting Him despite my circumstances.





KEEP BELIEVING

quick update about Brian

I know many of you are checking on a regular basis for Brian's status. Sorry for the lack of update. Not much has been new to report.

I don't have a lot of time to write a long note today. Our guests have all left and we are solo for the week. I am catching up on mail, filing, laundry, etc. today. It feels good to reconnect with my house and my domestic chores.

Brian is about the same as I last wrote. He remembers and forgets things on and off. One minute he asks if it is official that Obama took over and the next he is criticising the stimulus package. (a common theme in this house - I don't grasp stimulating the economy that has crumbled because of bad debts and irresponsible spending by increasing government debt. Those of us that are responsible consumers and borrowers are paying the price for those that aren't. I am tired of bailing out bad decisions while those that made good decisions rarely get rewarded.) He asked me again what happened to our cat that we got rid of 6 years ago.

He is having dizzy spells off and on. He is tired and weak. His speech is not great. He is just generally a bit confused and a little sicker than he was a couple weeks ago.

His appetite is hit or miss. Mostly miss, though. Food does not taste good to him. He eats very little, too. He feels a bit sick to his stomach most mornings. He has not vomited since two Sundays ago, though.

He is maneuvering through the house and into his own bed. He is not handling the remote controls very well. He gets confused and often needs help to change the input or to watch something on DVR.

Yesterday and today he has slept a bit more than usual and is EXTREMELY fatigued. He says it is like his body is just sore and never feels good.

Still, he visits with the stopper-bys. He plays cards well. He is in decent spirits.

I will not leave the house alone with Brian and I will not leave him here by himself. After seeing how drastic things can change and how he cannot recuperate easily if he falls, I feel this is for his safety and for my safety. It kind of stinks, but I am hoping to get out this weekend with some of his family for a dinner out or something.

We have no planned overnight guests this week or weekend. The kids have a 3 day weekend - off Monday for Casimir Pulaski day. Leave it one ethnic group in Chicago to create a holiday for the entire state of Illinois, not that I am complaining. I think the kids and I may get together with some friends and have some Pierogis - which I actually came to like in Canada. Only, I bet we end up having pizza instead - with a large gray mouse and video games.

KEEP BELIEVING

summits

Brian has been doing extremely well lately. He definitely still has some memory issues, but they are getting much better. Now he can remember that he doesn't remember if that makes sense. He listens to me when I tell him why I am now in charge of his meds and why I don't like him walking up the stairs by himself and why he can't be alone in the house. As good as he feels and as much as he dislikes it all, he now understands how bad he was to warrant such "mean" inconveniences in his life.

The last few months to Brian are a bit sketchy in his memory. He can recall things if something or someone triggers his memory just the right way. So, when we are talking about something he doesn't remember, I will state facts about the event or surrounding circumstances to trigger his recollection. Sometimes it works and sometimes it doesn't.

We have had to have the same "why am I not doing chemo anymore?" discussion...again. He looks around at all that is going on and all the visitors and hospital equipment and feels like we are giving up on him... again. I have assured him we are just being prepared for the very drastic changes that we have seen can happen.

This is the third time we experienced Brian's transformation from his chipper self to a shell of a person unable to walk, move, speak, or think rationally and back again. His parents and I can't risk being unprepared emotionally, medically, logistically, equipmentally (like that?), etc.

The good news is that Brian has been feeling great lately. His appetite is slowly increasing. He is mobile and aware. He is involved.

I told Brian the other day I believe one of the reasons for this third scare - the third time we thought we were losing Brian within a week or two only to get him back again - is that God is trying to tell us something. I think we have been given this precious gift of time again and again to remind us that when it is time for Brian to go, he is not mentally "with it" enough to have certain conversations with him. I told him I thought it was time for him to start having those difficult conversations with people, especially his boys. The conversations in which the people want to share with Brian how he has touched their lives and vice versa. I know it stinks. I know it feels like giving up, but in the end, shouldn't we all be having those conversations every day? Shouldn't we all be telling each other how much we mean to each other? If someone impacts our life in a concrete, measurable way, why wouldn't we take the time to let that someone know it?

In truth, we are all living to die. Shouldn't we live like it?

KEEP BELIEVING

the ride continues

The last few days have been incredibly up and down. We have reached summit of the coaster hills and plummeted to the bottom, then back up again. I feel like right now we are at the boring part of the roller coaster where you think must either end shortly or you are soon to be surprised with a hidden leg of excitement - maybe a loop or hill or a plunge. Who knows?


Plummeting:
Brian remembers NOTHING of what happened on Saturday night at Alexander's Steak House. He remembers nothing up to Monday morning and even that is sketchy. He is extremely frustrated with me and anyone else who thinks that he should take precautions or stay put. This is largely because at the most difficult moments of Brian's condition so far, he remembers NONE of them. He does not remember how bad he was in November just before he had surgery to install his shunt. He does not remember mid-January when he was unable to walk and forgetting everything before we discovered the tumor had progressed. And today, he does not remember what happened Saturday night and Sunday- how he was up all night and all the nonsense things he said like how he was going to request a change in management when I refused him a drink or how he was petting me on the head like a dog and he said at least he didn't call me a bitch when I asked if he was stroking my hair or petting me.

It is gone from his memory as are a lot of other short term things. He can't remember hour to hour if he took his medication. He can't remember moment to moment where I am heading or where the boys are if they aren't in the room. He looks for me all the time and constantly asks where I am. He didn't remember that Mom was here this morning when he woke. He doesn't remember whether or not he ate. And many other examples. He remembers long term things pretty well, though.

Summit:
He is able to move and walk a bit better. He is conversational and involved. His vitals are good. We slept in our bed last night and the hospital bed remains empty except for the kids when they play in it. He showered on his own last night as I stood by and watched. He is ascending and descending the stairs. He does not use the wheelchair, either.

Plummeting:
With his stability issues and the understanding that things can turn so quickly, I am insistent that he not walk around unless someone is close by him and that he not descend stairs unless a strong man is in front of him. He is not accepting this very well. He is not treating me very kindly saying some pretty harsh things, taking an incredibly sarcastic and defensive yet accusing tone. I know it is not the Brian I know speaking, but it is difficult nonetheless.

Summit:
Brian is very aware of his need for his medication. This has been such a part of his regular routine for 12 years that he cannot think without being engrossed with taking his medication.

Plummeting:
Brian does not remember if he took his meds. He thinks he took them, then he thinks he needs to take them - moment to moment. I hid all his bottles of medication and assured him I would be responsible for getting his right meds at the right time. He is not nice about it. I am developing some thick skin because I know this is what is safe for Brian.

Summit:
The boys went to school yesterday to Daddy sleeping in a hospital bed in the living room. When they arrived home, he was able to walk and lounge in the La-z-boy watching TV.

Plummeting:
I opened Gavin's backpack to find a card for Daddy that he had made at school because he had wanted to come home and see his Dad afraid he may die while Gavin was at school. His wonderful teacher had encouraged him to express his feelings on a card and share them with Daddy when we got home. The card had Dad written on it no less than 15 times. It made me proud and broke my heart at the same time. I had a conversation with Gavin that if I thought Daddy was getting close to dying while Gavin was at school, I would come get him. I cannot even believe my 7 year old has such a heavy burden on himself as he is learning that "igh" makes a long "I" sound.

Summit:
Yesterday, Grant had two great-aunts and his Memaw here to distract him and spoil him. He got some Spotted Cow Ice cream - one of our favorites and Taco Bell - his first time, but he loved it.

Plummeting:
Yesterday, I felt like crap. I had nausea and ahem, other, issues that plagued me for about 24 hours.

Summit:
I had plenty of relatives here to help yesterday.

Plummeting:
Today, my mom (Memaw) feels like crap.

Summit:
Today, I feel great.

Both:
If I think this is confusing for me, imagine how it is for the boys. Gavin came home to find Brian out of his hospital bed and walking around and asked me, "he is still going die, though, right?" Grant looked over at Brian watching TV and said, "it looks like Daddy is dead in that chair with his mouth open and not moving." These are some of the normal statements spoken in our house. It is like we all have to convince ourselves that this is real because we realize moment to moment things can change so drastically. We have to keep ourselves guarded and prepared. They are watching AirBud on the big screen as I write this. Moments ago, Grant was telling me to cry in his shirt. I explained I didn't need to cry right now. He said that I should cry because of Daddy. I explained that sometimes I feel like crying and sometimes I don't. He can cry to me and in my shirt any time he wants. Sometimes he will feel like crying. Sometimes he won't. I don't understand my own emotions and my own valleys and hilltops. To get them to understand is a whole other issue.

My boys are confused about sickness. They think sickness is the reason you give if you don't feel like doing something. If Daddy misses a game, it is because he is too sick to come. If Daddy doesn't eat, it is because he is sick. If Daddy sleeps late, it is because he is sick. And those things are true because Daddy doesn't want to sleep late or miss their games or be unable to stomach food. Daddy misses those things only if he is too sick to do them. They think they have to say they are sick if they don't feel like going to a game or if they don't want to eat. They are both constantly saying they are sick. I try to make sickness be something they DON'T want to be by saying things like, "that's too bad because if you were feeling good we could play this game instead of (whatever), but now that you are sick, you will need your rest instead." Things like that. Still, sickness is confusing in this house. As are lots of things.

Some days, as terrible as this may sound, it would just be easier if Brian consistently felt awful.

But that's not how I want him.

KEEP BELIEVING

Roller Coaster

Today was a roller coaster. After I wrote about Brian this morning and his fitful night, he fell asleep around 8:30 this morning until around 11:00. Then, he woke for about an hour and fell FAST asleep again for several hours. He has been in the recliner in the family room this entire time. The hospital bed was delivered around 11:30 and ready to go around noon or so. I wanted to get him into the bed which has an air mattress pad to alleviate the pressure points caused by Brian's dead weight (aka his right side). I tried a few times to wake him around 1:30. He could not be stirred. I tried again and again he would not even budge. I know that one thing we can expect with this brain tumor is that Brian will sleep more and more until he slips into a coma and most likely passes in his sleep. I became worried that he may be unresponsive forever. I don't know what to expect.



I gathered the support of a couple neighbors assuming that we would have to literally carry Brian to the living room where we have set up the hospital bed. Around 4:00, I broke down with my head in Brian's lap and sobbed, broken and defeated. Within a couple minutes, he woke up. He was very alert and I explained what was going on again. He was very confused. I sought the neighbor's offer for help and they came to get Brian into the wheelchair and into his bed while he was alert enough. He actually took a couple baby steps and was much more stable and steady than just a few hours prior. The transfer from the chair to the bed was easy and uneventful, thankfully. I had learned with Brian throughout the years that tears don't usually help me get my way. Unexpectedly and thankfully, this was not the case today, although no malice was intended.



For the next several hours, visits from Brian's family poured in as the word spread that Brian had taken a sudden turn for the worse. Brian was very alert and conversational. He made more sense than last night as he talked nonsense (albeit funny nonsense) with the shift changing to actual interest in events and people around him. When I sensed he was well cared for and surrounded by love and support and the boys were in the same situation, I went up to my bed and took a long nap.



When I woke, Brian was still alert and asking many questions. He not surprisingly doesn't remember the last 24 hours. He keeps asking where the bed came from and why he is in it. He is very confused as to the time of day and whether or not it is day or night. One minuted he proclaims how early it is and the next he proclaims how late it has become.



I have had to explain to him several times today that he is in the bed because he has been very sick the last day and can't really walk. That the cancer is affecting his balance and memory and hearing and thinking. He spent a small portion of the day angry. I think I won't explain that the cancer is causing this again. I think I will just explain that he has been having some problems and some balance issues. I don't know for sure. I will play that by ear. I don't want him angry. I want him peaceful. I think he is reliving the painful realization that there is nothing left to do and that he is dying over and over again. I think once is enough for that.



He fell asleep again around 10:00 pm. He has been sleeping for the last hour very peacefully. As soon as I finish writing this, I will sleep next to him on the trundle that we have placed in the living room. I want to ensure I get adequate rest.



I put the kids to bed tonight. I talked with them again about what is going on. Grant is more affected right now. He saw me crying earlier in the day and told me to stop crying. I told him I was just so very sad. He hugged me tightly and said, "Cry in my shoulder, Mommy" I sobbed in his shoulder for a while. He started to pull away and looked me straight in the eye saying, "If you need anything, just tell ME, and I will get it for you." I guess sometimes it is okay for the roles to reverse. He also said tonight when I put him to bed that he is sad and thinks it isn't fair for Jesus to take Daddy now. He wants Daddy to go when he is a Grandpa. I couldn't agree more.



My mom is staying with us until further notice. I have two aunts from St. Louis here tonight as well. We have offers pouring in from people as to what they can do. I will just remind everyone that they can send a personal note to Brian at this email address:
brianoneill1972@yahoo.com
and they can contact Kayre (pronounced Carrie) to see what can be done:
karyes@cmcousa.com
309-691-6930 (home)
309-922-9239 (cell)

Brian requested some McDonald's for dinner. He didn't eat much at all. He said it tasted awful. While some may agree that McDonald's often tastes awful, this is an unusual statement for Brian. Still, he has been able to identify and satisfy the urges to urinate and drink today. He has not vomited since last night.



The boys spent some time snuggling in Daddy's bed this evening with him watching some TV. It was cute and they all looked great, don't you think?



I will write more when I get a chance. We do not have a laptop. The desktop is RIGHT next to Brian right now. It makes me happy to be able to hear and watch him in a peaceful slumber AND write this at the same time.



KEEP BELIEVING

a turn for the worse...again

Saturday night, as Brian and I were out to eat with a large group of friends for Valentine's Day, he suddenly started hearing strange noises. He became confused as to where we were and how we had arrived, etc. I calmly had my sister who was with us call my Dad to come pick us up in the van and said good-bye to all our friends. Brian was unable to walk to the car, and thankfully my Dad had his wits about him to bring the wheelchair.

When we got home, he was able to walk into the house with assistance and he and my Dad watched some TV. He had the volume up extremely high because he was unable to hear much.

Brian's confusion continued. He was insistent on going pee, yet could not make it to the bathroom. We got the urinal, but he was unable to go - yet still insistent on the need to go. He was very difficult to discuss with logically due to his confusion. He was in no condition to go up the stairs due to falling, but was insistent and irritated that I wouldn't let him. I called hospice for reinforcement and the nurse came out to help convince Brian to stay put. She took his vitals and his blood pressure has dropped again while his pulse is over 100. This is "part of the process" - a term I am hearing more often.

After she left, we gave Brian a Lorazapen to help him rest as he was so fitful. It did no good and within an hour or so, he continued with his bathroom urges and talking incessantly - nonsense mostly. As he would begin to drift to sleep, his right leg would tremor and he would talk and mumble more. I was afraid that he would fall asleep and not wake, so I called Jan, Brian's mom. She was up with a stomach bug, but came over around 2 am.

Brian was still not sleeping or resting, so we gave him a sleeping pill around 2:30. It did not work. Brian did not sleep at all. We turned on the TV to help him rest, but he just played with the remote. He talked to Jan if she would listen, me if I would listen and himself if no one would listen. He vomited everything he ate over the course of the night, too.

This morning, with the house stirring and everyone waking, he is still confused and talking nonsense. Examples: He thinks he has a cup of coffee when he doesn't. He wants to go outside or across the room and thinks we discussed that we were going to do this. I cut off his water telling him that he keeps vomiting, so he needs to slow down on the water drinking. He told me he was going to get new management.

I told the boys when they woke this morning that Daddy got much sicker last night and he is saying some funny things. Daddy can't walk right now and we have to have a hospital bed come to the house. Gavin explained that it should probably go in the Wii room. I was proud of him for thinking that through and offering up his video games. I told him we could very easily move the Wii to another room.


The strangest part of this whole transpiring of events is the suddenness of it all. Friday night, Brian and I went to a local bar to hear a good friend of mine's band play. We had a fabulous time. He was walking and talking and remembering and totally fine. All day Saturday was the same. He was in a great mood and laughing and being his same witty self. This all happened WHILE we were at Alexander's Steakhouse. I couldn't believe the sudden onset and rapid decline.


So, I pray that Brian can find some peace and that his body can rest. I pray that our time can be blessed. I pray that the children are not alarmed.

I will write more as time allows....

KEEP BELIEVING

looking a gift horse in the mouth

Lately, I feel like I have been looking a gift horse in the mouth.

I can't make sense of the origin of that phrase and I have no idea if I used it correctly or not. Brian loves to tease me regarding my incorrect use of my limited vocabulary or my mispronunciation of a word or my confusion of a commonly used cliche. So, if nothing else, it is good for a laugh.

Seriously, though, I feel as though lately, with as good as Brian is feeling (Does one feel good or does one feel well? For the purposes of this blog post, Brian is going to feel good, but if someone corrects me in the comments next time he may feel well.) we are not spending our time just enjoying it as we should be. You see, just three weeks ago, Brian was showing all the signs of someone succumbing to the progression of this disease - the memory issues, the balance, the speech, the vomiting - all are signs of the disease taking over the brain. Then, we quit chemo. A week later, Brian's memory was restored, his balance and speech improved and his vomiting subsided.

And for the last two and a half weeks, Brian has maintained a very promising quality of life. So much so, that it raises much question amongst myself and many others as to whether or not Brian could be showing signs of improvement in the areas of the tumor progression. Was it the chemo that helped that? Or was it getting off chemo that helped with his current condition? How could we tell for sure?

One way to tell would be to have another MRI performed. But then what? The doctors would never say that Brian is cancer free again. I know my God is capable of healing Brian, but my heart and my mind are colliding here. While Brian is showing signs of improvement in the memory and balance categories, in the last two weeks his right hand has lost a little more function and his speech is hit or miss. His speech is markedly worse than it was in October when we found out the cancer was growing again, but only marginally worse than it was in December. He has been having some issues with vomiting here and there. He vomits in the morning about two to four times a week. Also, his memory, while better than it was two weeks ago, is not up to the status it was a month ago.

So it continues to beg the question - if we did another test, THEN WHAT? Based on Brian's current condition, logic tells us that the tumor is still progressing some or he would have the function in his right hand and leg returned. He would be speaking clearly. He would have energy and endurance. He does not. So, if an MRI shows that the cancer did shrink some in the cerebellum and brain stem, etc causing some improvements in his memory as a result of the chemo, does it matter? Brian remembers almost NOTHING from the week and a half in early January when he started to take a sudden turn for the worse. He doesn't remember the good or bad moments - not the doctor's visit, not Spamalot, not the vomiting, not the falling, etc. If the chemo did shrink things, having Brian in the condition he was to get to the point where we are today is so not worth it. It was not quality time. I would even go so far as to call it terrible.

Does this make sense?

And why do I write this? Why am I unloading all of this and writing out these thoughts and the conversations Brian and I have had over and over the last three weeks?

A few weeks ago Brian was so bad that the doctors and I thought Brian had, at best, a few weeks remaining. We made a decision to get under hospice care and move forward from there. Our assumption was that Brian would continue to decline. That has not been the case, so it makes the decision to go under hospice care and cease treatments confusing for many. Many people assume hospice means that the very end is imminent. I am getting many questions from friends and family as to why we aren't considering more. It makes it very difficult to accept our decision and carry on right now. Brian and I have talked the issue into the ground. We have thought it through and prayed about it. What we are experiencing with Brian right now with respect to how good he feels, is a gift. It is a gift of time and life we didn't think we would have. Why is it that is not enough?

I spoke with the hospice nurse yesterday regarding Brian's condition and progress. I explained that it is confusing how he has improved so much. It is difficult to accept the decision and live out our days right now. She explained that Brian is young. He has this shunt which is probably helping. There is no formula for what to expect from here. But, Brian does show slight signs of worsening - the vomiting, the weakening of the hand, etc. They are slight and slow and that is good. Hospice has a sometime unfair black cloud that follows its name. We wouldn't be under hospice care if this was not what was best for Brian and our family.


Brian's doctor knew the last chemotherapy would probably not do much for Brian based on how his last two scans had looked. Yet, he took a risk and gave us hope for one more shot. It was not overly surprising to him that Brian's disease progressed anyway. It was devastating to him. He cried with me in his office as he wrote the order for hospice. He did not want Brian to be in this situation any more than we did. We have done all there is to do. He was there with us every step of the way - believing, hoping, laughing and crying.

So, being under hospice care doesn't mean we have all given up. It simply means we have moved on.

And I want to enjoy this time. I feel like I am not enjoying this time because of the pressure coming from myself, friends and family to consider Brian's condition and what to do from here. I feel like we haven't come to peace with our decision and I want to come to peace with the decision. I want to live what time we have remaining in peace. I CRAVE and BEG for PEACE!

Please pray for peace in this decision and this time. The boys included. It is confusing to be told Daddy is dying and to spend our time with him and then to see him improve. It is encouraging to see him at one of their soccer games, then it is scary to see him unexpectedly vomit in the morning. Gavin thinks he should go to the children's hospital where he went because they are good at making people better. He has told me there are other doctors that can still help. Why won't we try them? Why won't God heal Daddy? Doesn't He love us enough?

He does love us enough. He has given us this amazing quality of life and some time to enjoy it. Please pray we maximize it.

KEEP BELIEVING

The tiny every day miracles

Life has been happening all around us. It is strange, yet comforting to go about every day business as if nothing is happening.

Brian is doing remarkably well. He is maneuvering the stairs and house. He is quiet, but conversational if he feels he can or wants to contribute. He is involved. He is attending the boys soccer games. He is playing cards. He is in good spirits. He feels relatively well. He has vomited a couple of times in the last week, but nothing terrible, and no all-day episodes like in the past.



Hospice will be calling on us once per week for now for Brian's care. I have a lot of resources for the kids and understanding this process. However, though, the overall mood of the house right now is uplifting and joyful. The visitors that Brian has had are not here saying goodbye, but rather living life adjacent to Brian for a little while longer. Saying goodbye can be awkward. It is difficult to say how long Brian will continue to do this well, so we don't guess. I didn't expect him to be doing as well as he is right now. He is doing better than he was even 3 weeks ago. That in and of itself is a small miracle.



This past weekend our visitors included my family - my sister and brother and their families and my parents. It was very fun and Brian did great. The layout of the house worked well to accommodate all 15 of us. We missed my nephew, Andrew, who is in college, though. My brother and Heather were supposed to come without the kids since the kids have so many sports obligations, but all of them ended up coming on Thursday. You see, they live in Paducah, KY which has hard hit by the latest ice storm. The kids' school and all events were cancelled since they are STILL without power. Our house was like an oasis for them with phone service, Internet access, TV, a warm fire and power. As terrible as the ice storm is for their area, I feel blessed that God granted us all time together without the nagging of other missed events. Small miracles.



Brian's little brother, Michael and Jen had their first baby - McKenna Riley on Wednesday, January 28. McKenna Riley is the newest cousin to 5 male grandsons and the newest niece to 2 uncles. In case you didn't read into that, she is the first female born into Jan and Ed's (Brian's parents) lineage. I am so happy to have the celebration of McKenna's birth to commemorate this time rather than Brian's failing health. Twelve years ago, my brother, Kevin and Lisa had their baby girl, Lexie. They were induced just a day after Brian was diagnosed with his brain tumor. They made Brian and me the godparents in order to help us remember a joyful occasion during that time of May instead of the anniversary of Brian's diagnosis. That was very special to us and I always think of how life happens and joy is all around us even in the midst of our struggles. McKenna is another reminder of small everyday miracles.



Speaking of miracles, Brian made it out to the boy's soccer games last week. He attended both Grant and Gavin's games due to the kindness of a few that helped Brian get into the building and others that cleared the walk for him to get in the building without slipping. Grant played a great game as he usually does - hustling and trying his hardest. He was awarded the Gatorade for best defensive player by his coach that day. Daddy was there to see it. The next night, Gavin scored a goal. Any of you who have ever seen Gavin play in the last year know this is TRULY MIRACULOUS! And Daddy was there to see it. Small everyday miracles.



KEEP BELIEVING

What you can do for us

I would like to start this post off by saying, WOW!!!

As you may or may not know, Brian and I come from large families. Between the two of us, we have over 50 first cousins. FIRST COUSINS. We have over 30 aunts and uncles. We have cousins with kids and kids of cousins with kids. We have friends from all over the country and beyond (eh?). We have a large church. We have groups within our church. We have amazing neighbors. We have co-workers. We are blessed with PEOPLE in our lives. Then there is this whole thing called the BLOGGING world. There are real people I have never met that read this blog and people that we have not seen in years that read this blog. I didn't know the extent of this until just this week. I mean, I knew, but I didn't KNOW, you know?

And everyone wants to know what, if anything, they can do for us. WOW!!!

I am getting bombarded with phone calls, emails, texts, facebook messages, comments, etc. asking what anyone can do.

I am coming to a place in my life that I realize people WANT to do. My mom has told me that if I do not let people DO for me, I rob them of the joy they receive from DOING. So, I am learning to accept help. I am learning that I can ease my burden when I allow others to enter my life and do something that makes them feel good.

In order to help with this difficult time, there are several avenues that anyone can take. Please, PLEASE do not take this as a solicitation for ANYTHING. This is actually very awkward and uncomfortable for me.

Practical:

Brian's first cousin Karye Setterlund has agreed to be a contact point for all things practical - meals, errands, groceries, insurance, cleaning, etc.

Here is her contact information if you are interested in helping in any of these areas:

Karye Setterlund

karyes@cmcousa.com

309-691-6930 (home)

309-922-9239 (cell)

I am keeping in close contact with her as needed each day as far as what meals we need (none right now) rides for the kids, groceries, errands, etc. This will ease my phone burden which is heavy some days.

A few tips, though:

• If you bring a meal, disposable dishes are most appreciated. OR please be willing to come back and get your plate - forgiving me if it is not clean when you arrive.


• I don't care about brands on anything unless I specify.


• I do not use any particular brand of laundry detergent - whatever is on sale.


• If we are not home at the time you came for whatever reason right now, it is cool enough to leave just about anything outside for a while. I check the front porch frequently as I find treasure there from little angels frequently.


• Be patient with me and thank yous. I am historically bad at this and right now, I am scatter-brained. Please give your information to Karye so I can thank you properly, though,

Encouragement:

Please know that I am reading the comments. Every last one of them. Sometimes I have time to reply. Sometimes I do not. I am trying, but some days it is overwhelming. The emails coming in for me to relay to Brian - I have to admit - do not always get relayed. I get distracted. I read them, but then delete them to keep the inbox clean and forget the details. If anyone wants to send Brian a specific note, please feel free to email this account we have set up:

brianoneill1972@yahoo.com

Brian's brother, Sean is going to monitor it regularly, print out any and all notes for Brian and bring them to us. A hard copy is still best for ensuring we read these wonderful words together. Or if you would rather send us an actual card or letter, please feel free. You can email the above address and Sean can get your our address or you can email me and I can do it if you don't have it. Every time we get a letter from someone that describes how Brian touched their lives, I see him shrug - like what did I do? I am just being me. I have told him the amount of people he has impacted has surprised even me who knows and understands how amazing he is.

You can continue to send me emails and comments for encouragement. I also facebook (Angie Baer O'Neill) if you are looking for me there. I read every single letter, etc. from everyone. I have to tell you I find great comfort in hearing from other widows. It is strange, but it lets me know that I can do it. That the boys and I will and can be okay. They are also incredibly honest. Something I strive to be. I don't want anything sugar coated.

THE KIDS:

I am trying to keep things as normal for the kids as possible right now. I do not want to shower them with gifts and sweets and other things to ease the pain as I do not want them learning to turn to such things for comfort. I want them to face their fears and grief, address them and work through them with me or whomever else can help them. This is NOT to say that an occasional pack of gum, action figure, video game, trip to the Spotted Cow or a movie isn't a nice gesture. I just don't want it to get overwhelming and I don't want to draw more attention to them than already is. Playdates are good. Letting kids come here on good days keeps things normal for them so they feel comfortable in their own house and letting them know our house is open to friends is important to me. Some days, though, they just need to get out - to get away from the visitors and the hub-bub. Grant is home every afternoon at 11:00, so I think I am going to try to set up once or twice a week playdates with friends and cousins (hello Brody) to give him something else to focus on.

Financial:

Please, PLEASE do not take this as a solicitation for ANYTHING. This is actually very awkward and uncomfortable for me, but many of you have asked.

I am in the process of establishing some sort of a fund/trust in Brian's name. I am meeting with a friend/advisor to assist with this on Friday. The fund would be used primarily to help with the children's education and well-being including medical and dental coverage, etc that we will lose in the event of Brian's death. For those of you who don't know, Brian was diagnosed with this disease only one month after we were married, so we have only the life insurance available through his work. Brian and I are very smart and frugal with our money. We live within our means and do not do anything extravagant. This fund would simply allow us to continue to do that for as long as necessary until I could find the right job or pursue the best avenue for employment that is best for the children and me in the event of Brian's death.

My main goal is to keep things stable and secure for the kids. I do not want to make any rash decisions about jobs and moving out of panic. The economy is not the best right now. I would never allow the children to lose this house and our livelihood. I would do whatever it took to maintain that. The generosity that many of you have already bestowed upon us is helping that to be a reality without drastic measure. Mind you, though, I would take drastic measures if need be. However, I know that for the next X number of months or years, my boys will need me. They will benefit from the security of my being the one to get them to school and get them home from school. They will be dealing with not having a daddy around to play sports with and to read to them and to watch them when they learn a new trick or score a goal or catch a fly ball. This breaks my heart and I know it will be painful to them as other dads are helping coach, practicing with their kids, assisting with homework, or simply cheering on the sideline. I want to fill as many gaps as I can, especially in the near term if possible.

I would also like to be able to do charitable things in Brian's name and memory if God allows. We have been blessed a couple times by such organizations and nothing would give Brian more pleasure than being able to bless someone else in our situation some day.

So once again, PLEASE DO NOT THINK I AM ASKING FOR FINANCIAL ASSISTANCE. Nothing could be further from the truth. Some have told me they have prayed specifically about this and as awkward as it is for both of us, who are we to deny God's nudging? I prayed for financial provision. I didn't pray for it to be anonymous. I should have been more specific. I think God is trying to teach me something about humbleness and gratitude.

I have to say it again - PLEASE DO NOT TAKE THIS AS A SOLICITATION FOR FINANCIAL ASSISTANCE. PLEASE! Economic times are rough. We are currently blessed. There are many blessing us each day as I write this now. There are many who do not have what we have now, and who will never have what we will continue to have even when Brian does pass. So, I can't shake the guilt of this regardless. Please know, though, that should you feel lead in this way, integrity is not something I would ever compromise in any aspect of my life - financial included. Does that make sense?

Karye is the contact for this as well.

Whew, I said it..... And I lived.... Okay....Breathe....

Visits/Phone calls:

There are so many that want to visit, see or talk to Brian. This is to be expected and we encourage it. You read above that we have large families, so crowds to us are nothing new. Due to this, though, we cannot guarantee that there may not be someone else here when any one person or group is visiting with Brian or me. I like people. I need people, family and friends surrounding me and supporting me. They distract me, make me laugh, comfort me when I cry and fill the gap when I can't make it across the gorge. Please know that if the visits are too much, I WILL SAY SO, so don't feel like you are over-imposing. I will be honest. I will do what is best for Brian, the kids and me. In saying that, though, we have a two story and a basement. If the best thing for Brian is quiet and solitude, but not for me, I can still have visitors retreat with me to the dungeon. I am learning that this process is not just about Brian. It is about all of us.

Okay, back to the point. I will still be the contact person for visits for Brian. Please don't feel like you are overwhelming me right now. Visits during the day are pretty good actually, as Gavin is at school and Brian is more alert. Monday and Tuesday evenings are not good as we have soccer. Any other evening is doable, but we will not overdo this because it also can cut into our family time that we are cherishing right now.

I know weekends are best for many due to work, travel, etc. So, PLEASE DO NOT FEEL LIKE YOU CAN'T COME OVER FOR A VISIT IF SOMEONE ELSE IS HERE. We do not know how much time Brian has remaining and weekends are the only option for many. That is just the way it is. If anyone is uncomfortable with that, just know it isn't coming from us.

AND I WILL SAY ENOUGH IF I FEEL IT IS ENOUGH. I am being honest. I told my girlfriend the other day that I needed her gone by 1:30 because hospice was coming for the first time. I hated saying goodbye to her, but I had to do it. I told some friends the other day that I needed them gone by 12:30. It was hard, but not as hard as the first time. I called a friend and cancelled a dinner plan tomorrow night because I have felt overwhelmed this week. It wasn't THAT BAD. I told my MIL I wanted her to come at 10:00 tomorrow so I could have the majority of the day to myself since Grant has a playdate. It felt good. So, really, I will say enough is enough. I am getting good at it.

Best hours for a visit:

10:00am to 3:00pm

not good: Monday and Tuesday evenings.

Other decent times:

weekends, evenings 4-7 W-F.

Best hours for phone calls:

10:00-4:00 Mon-Tues

10:00 - 7:00 Wed - Sunday

Brian is a man of few words right now. He is having some speech issues so I try to help out as much as possible, but most phone conversations are brief.

That about sums it up. I feel like a pushy, bossy, demanding little thing, but I think this is what people were looking for. If I offended anyone, I didn't mean to, but I can't apologize right now.

KEEP BELIEVING