December 28 - Quick Update

I haven't been online much in the last few days as we've been trying to spend as much time as we can with Oliver and our family. I just can't keep up with everything right now, so if I don't call you back or email you, I apologize, but I just can't seem to juggle everything right now.

Oliver is on oxygen all the time now. He's fallen several times today as he's tried to walk to the restroom. We have a hospital bed in the living room for him which provides an incline for him to sleep more comfortably. He likes having the Christmas tree as a night light and wants to keep it up all year. I'd like to have more room in our small living room, but I'll do whatever makes him happy. It's sad that he only had a few weeks in his Harry Potter bedroom. I should have done it sooner for him, but I can't dwell on things I can't change. I still have a few things to finish in the room. I just can't seem to find the time to get everything done.

We've been getting lots of blankets delivered to our home from so many wonderful people. There have been deliveries made to the Ronald McDonald House in Iowa City, Covenant Hospital Pediatric Ward in Waterloo, St. Vincent De Paul in Waterloo (there have been a large number of Burmese people coming to the area that have NOTHING. The nuns cried at the sight of clean blankets for them to use.) We still want to deliver some more to other hospitals around the area and Iowa City. We have been able to bless so many people because of all of you. THANK YOU.

We've also been keeping the local post office busy this Christmas with loads of boxes and letters for Oliver to open. We've all had to help out with opening the letters as there have been SO MANY! One day we came home and couldn't get to our front door because of all the boxes and letters on the front porch! It's been nice to see his face as he reads the cards. It's been a good distraction for me as well - keeping my mind on other things. So many people shared their love and support for Oliver as well as personal stories and I have found myself in tears so many times. Life is hard. One thing I've learned through this ordeal is that we have to bear one anothers burdens. We can't get through these hard times alone. So, thank you for helping support us and lift us up in your prayers. I KNOW that is why I can continue to get up each day.

Ollie wants to go to Iowa City in the next couple of days to visit some people at the hospital, make blanket deliveries and go to the mall down there. I hope he will be able to travel that long in the car. I'm hesitant about the whole thing. He also wants to go to Chuck E. Cheese to play games and I'm planning a Harry Potter themed New Year's Eve. I've learned that some things just can't wait. We have to keep moving forward even though the future is unknown.

So... I'll try to keep people posted in the moments when Ollie is asleep and I feel as if I can take some time to jot my feelings down. Please keep Tiara's family in your prayers as she passed away a few days before Christmas. Also... pray for Robbie and Brandon as they are both having difficulties as well. Pray for the families that have recently lost loved ones, especially during Christmastime when families are all together and a piece of the family is missing. My grandmother passed away on Christmas Eve day, but we aren't able to go to the funeral as we are dealing with Oliver's illness right now. Life does not slow down. I know I've said that before... but wow... it really doesn't slow down. I feel like I'm living life in fast forward, constantly moving and doing something for someone at all times of the day. I barely get to sit down for 5 minutes at a time, uninterrupted. My own physical pain (back, kidney, heel) is starting to get the better of me and slowing me down. I need to take more care of myself, but there just isn't time. At least... it doesn't feel like there is time to squeeze one more thing in. Oh well... such is life. At least there is no more pain in the next life. I certainly can't wait for that day to come. I've been more aware of my complaining about my physical pain since Ollie never complains. I'm so grateful that he isn't in any pain. That is certainly a blessing. Anyways... We are constantly grateful for your support, love and prayers. I can't seem to say THANK YOU enough. *LOVE*

Ollie

OXYGEN --- We met with the hospice nurse the other day and now Oliver is on oxygen as needed, however, Ed noticed that his normal coloring came back after he was on the oxygen for a while so he's been on it for longer periods of time now.

MOBILITY --- A sweet friend, Sharon, made some Christmas tree sugar cutout cookies and brought over all the stuff for decorating them, so that is what we as a family did tonight. Ed's brother, Danny and his wife and kids made some as well. Afterward, Ollie wanted to take some cookies over to our neighbors house. He had a hard time walking next door so Ed went and got his wheelchair to help get him the rest of the way there. It's hard to see how much mobility he's losing. I love to see my kids want to help give things to our neighbors and others. It makes me feel like I'm doing SOMETHING right. I told Eden today that Christmas is about giving. It's about doing for other people and making people feel special and loved. I sure hope my kids 'get it'.

FEAR --- Oliver has been saying that he's scared all the time now. Just out of the blue he'll say it and I know he's referring to the fact that he's scared of living forever. I know how things are scary when you don't know exactly what it will be like, so I tried to tell him that he will be alright and I also said, "Ollie, you're tired here, right? When you are in Heaven, your body will never get tired. Your body won't ever need to take a break and rest. You will be a perfected being. I don't think much of what I say helps him much because the next day he says he's scared again. Sweet boy... I just don't know what else to do for him.

HUMOR --- Through all of the frustrations with his body not working correctly and being scared and having so many questions, he STILL has his sense of humor and that great laugh and smile. It's been hard getting photos of his smiles because he'll see me taking a picture and stick out his tongue or make a goofy face. Little turd. He's so funny with some of the things he says. Oh..... I'm gonna miss that.

Ollie

Ollie's breathing has been quite labored over the past several days, which has been worrying me. The steroids he is taking are horrible for what they are doing to his body. He's ravenously hungry all the time and has gained a horrible amount of weight in such a short time. Poor kid. He still has sleeping issues, but hasn't been sleeping as much through the day as he was a few weeks ago. He's been saying a few things that just take my breath away. He told Ed and I yesterday... "I'm going to die soon aren't I?" How do you even begin to respond to that. Does HE know? Is the Spirit preparing him for it??

Last week my friend was over helping with dinner and getting Eden's birthday party off to a start and Ollie was sitting on the couch and just started crying. He said that he didn't know why he was crying and then said, "Cancer is strong." I told him that he's been so strong in battling it. He has so much on his mind and he doesn't speak much about it. He just keeps most of it in until he can't handle it and then breaks down in tears. He's been not wanting to spend the night anywhere lately either. I think it's because he's afraid to die anywhere else but home.

This whole situation makes me feel ill... absolutely ill. It has been two years of constant wonder... when is it going to happen? How is it ultimately going to take him? I know it sounds sick and hopeless to say that, but it is a sick and hopeless situation. We were given a death sentence when we heard the words 'Diffuse Intrinsic Pontine Glioma'. Do the research and you will realize that kids generally pass away within 9 - 12 months. We have had no hope. The only hope I've been holding onto is the hope that one day I will see him again. Even that faith has been shaken throughout this journey.

We've been trying to focus on daily things to do during the holidays and have had fun painting ornaments and decorating the Christmas tree, but I'm just not in the Christmas spirit this as much year. Now I understand why so many people dislike the holidays when a loved one is ill or has passed away. The holidays are supposed to be full of joy and gladness, but I'm just feeling like I'm holding on by a thread. While most people are fussing over getting their Christmas shopping done or Christmas cards sent out, I'm racking my brain with trying to figure out what more we can do for Oliver. I just feel like there is nothing more we can do. I've seen this journey played out in so many other children... too many other children.

I just feel lost... masking my pain with busywork around the house, trying to stay strong in front of the kids and everyone else. Pain and grief really do make a person a great actor. There is so much more that goes on behind the smile that I try and have plastered on my face. I can't hardly handle this pain that I am in and I don't think anyone else that I talk to can even comprehend it. I just feel like most people don't understand. They just can't understand. Life has brought on so many emotions which is utterly overwhelming, especially now. The other day I just sobbed until I was hoarse and my eyelids were swollen. Probably the worst cry that I'd had since he was diagnosed nearly two years ago. The reality of what is happening just hits you at the strangest times and spirals out of control. I just laid in my bed and screamed into my pillow. I thought my head was going to explode. Sometimes I feel like I just can't hold on any longer.

Everyone says that we are lucky we've had two years with him and although I agree that we have truly been blessed with that, it's been a nightmare living each day wondering when the tumor would start to grow again, because it always does. Will he live until his birthday? Will he live until Christmas? Do you have any idea what that is like?! That is the way that the DIPG story plays out. Everyone has their opinion or their advice to give, which I try and listen to, again with a smile on my face always trying to give everyone the benefit of the doubt because they just don't get it, when sometimes I just want to start screaming and say, "You have NO CLUE what the last two years have been like!!!" EVERY SINGLE PERSON'S JOURNEY IS DIFFERENT. I also have a mental illness that rears its ugly head on a daily basis and another child that won't eat and may need a feeding tube. Some days I just want to stay in bed all day long. "You've got to be strong for your kids." Yes... yes... I know that and when I break down sobbing??? Does that mean I'm a failure because I just couldn't keep it together in that moment? I just can't hold it all together all the time. I can't do everything that everyone else thinks that I should be doing. I can only do what I can do. I can only run as fast as I have strength and right now... I feel like I'm crawling. I haven't given up... I'm still here and haven't taken any drastic measures. I have just felt lost for two years. Up and down, up and down. My world is just spinning out of control and I just feel like I can never measure up.

TIRED * OVERWHELMED * SAD * WORRIED * SCARED * RUSHED * I just feel like life is in fast forward and we are just scrambling to get through the day and make memories. Rush, rush, rush. I want to slow down and just enjoy the time we have left with Ollie.

"Are we human or are we dancer?"

Saturday, December 3, 2011

Anyone who knows where the phrase in the blog title comes from is obviously a fan of The Killers, Oliver's favorite band! We've been listening to them for the past several years after Ed had seen them play on a late night talk show. He was telling me that the lead singer had one of the best voices he'd ever heard. We started listening to them and Oliver started liking them as well as all of the other kids. During Oliver's radiation we would drive an hour and a half to the hospital in Iowa City for the 15 - 20 minute radiation treatment and then drive the hour and a half back again. We would do this every weekday for six weeks. Needless to say, we listened to lots of comedy routines (Brian Regan and Jim Gaffigan) and music in the van and the majority was the music of The Killers.

Also, when Ollie shaved his head after he started losing his hair, we bought him a Wii and one of the games, 'Karaoke Revolution' features their song, 'Human', which is a favorite of most of my kids. I think I have Ollie and Jaren singing on video somewhere. This is a song that makes me tear up as it brings me back to the time of his radiation. The emotions I had then as well as some of the lyrics just made me lose it at times. I really got to know this song well after singing it a thousand times on the Wii.

I was interested in learning more about the band and realized the lead singer, Brandon Flowers, is LDS. (Latter-day Saint/Mormon) I didn't know if he was still an active member of the church, but later found a video piece he did that tells more about his faith. Our family are members of the church and it's rare to find famous people that share our faith. (I was baptized a member when I was 18 years old and then met my husband, Ed and was sealed in the St. Louis Missouri temple in 2000).

I was saddened to realize something else we have in common, that a loved one had a brain tumor. Oddly enough Brandon's mother passed away on Oliver's last day of radiation, in February of 2010. She, too, battled her brain tumor for two years, I believe. I was sickened to hear this and my stomach dropped. Even though people are famous, they still have to go through the same trials we all do. I think Brandon looked a lot like his mom from the picture I saw. I've been thinking of him and his family ever since.

Sometime in the beginning of November, after we got the news that Oliver's tumor was growing, we got an email which was forwarded to us from our local newspaper. It was actually from Shane Flowers, Brandon's brother! He had a number for us to call and Ed immediately called him back. He said that he and his brother had seen Oliver's blog (I guess Shane found out about it from someone at church) and read about how much Oliver liked The Killers. (I'd been trying to find a concert to go to forever, but couldn't find one nearby). He told us that Brandon said he wanted to come and meet Oliver!!! Yeah... pause... breathe... I still can't believe it quite yet. A few days and a few phone calls later we had it set up that they would meet us here at our house on December 3rd. He just wanted it to be a small gathering which was fine by me, but it was really hard to keep it a secret!! :O) One sad thing was... I couldn't take photos of him while he was singing or take any video. I joked with Ed that we should set up a 'Nanny Cam' somewhere! "Um... why is your poinsettia blinking and moving???" Ahhh... but we didn't. We'll have it locked away in our minds forever! :O)

So on Saturday, my mom and two brothers, who were also fans, came over with a bunch of snacks and goodies to share. My brother made some homemade hummus as he knew that was a favorite of Brandon's. We wanted to make them feel welcome and at home here in Iowa. Anyways... we were getting things ready and then we heard the car outside. I swear we were like a bunch of dogs stopping and looking for the 'squirrel'! Eden (age 8) was peeking out the window and then fell down and said, "I think they saw my head popping up!!" We answered the door and Brandon, his brother, Shane, and Jake (a guitarist that accompanied Brandon on his solo tour) came walking in. They were all so nice. We all sat and they got right into singing a few songs. They started out with 'Human' and of course we were all pretty much in tears by the end of it. I have to say... I was AMAZED with how strong and clear Brandon's voice was. UNBELIEVABLE. I couldn't believe he was sitting on our couch, singing to Oliver. I had to get a picture of Oliver's face while he was singing 'Human'.


It was a hugely special moment for us that he sang the song we'd heard so many times on this journey. I feel like I'm going to cry just typing about it and thinking back to it. Seriously... what famous people do this?! I just can't get over it. (***flash forward -- during Christmastime we had some carolers come and sing at our house and they asked for any requests. Jaren doesn't miss a beat and says, "Sing, HUMAN!")

The second song they sang was 'Don't Shoot Me Santa', which is one of Oliver's favorite songs. (***flash forward -- Christmas Day this year, Oliver playing a Wii hunting game WITH a Killers shirt and Santa hat on... I couldn't help but take a picture! hehehe)


Jake, the guitarist, was 'Santa' for the time being and had a few speaking parts throughout the song which we all busted up laughing at. I was surprised Jaren didn't sing along as he knows all the words. After that, we all sang 'Rudolph the Red-nosed Reindeer'. I'll never think of that song the same way again! Too cool. He also gave Ollie the jingle bell wreath he used while singing. Finn later wore it on his head as a halo. I couldn't help but think what it would be like to be one of Brandon's kids and have him sing church hymns or primary songs to them. I wanted to ask him to sing, "I Am A Child of God", but restrained myself.

My mom asked them to sing two more songs, 'Spaceman' which had been in my head all week, and 'Read My Mind' which they graciously agreed to even though Jake didn't know the guitar parts. Yeah... he did unbelievably well anyways. Seriously... these are some amazingly talented people sitting in front of us. Eden really likes 'Spaceman' so it was nice they sang that one as well and they are two that I really like as well. And... then they were done. Boo. I could have listened to them all afternoon. I would have LOVED to take Oliver to a concert, but man... who gets to experience it in your own house?! Unreal. After they sang, they gave Oliver a huge gift bag with some chocolates, red cream filled oreos and lots of other goodies including several black Killers t-shirts. (as seen on Oliver in above photo.)


We all talked in the dining room for a bit while we ate some goodies. It was funny because at first Finn, who just turned 2, was afraid of Jake because of his beard. That kid is scared of Mascots, Whoopie cushions and fake mustaches so it wasn't a surprise he'd be afraid of a bearded man. He did eventually warm up to him. It was also neat to see Oliver play the piano for them. He played 'Joy to the World' and bits and pieces of some other songs that he's taught himself how to play. After they were here for an hour and a half, they needed to head back, so we got some group pictures.

Jake, Brandon, Oliver

Oliver is handing Brandon a marker for an autograph. They signed the papers with the words to one of the songs. I wish I would have thought to grab a cd cover or something.

Finn is the ghost of Christmas Present wearing the bells like that!

Finny rockin' Uncle Chad's sweet kickers.

It was an afternoon to remember that is for sure. They were all so nice and easy to talk to. I just can't get over the fact that they wanted to come here for Oliver and meet him. I must admit, he is an amazing kid. The bravest kid I've ever known. Again... THANK YOU to Brandon, Shane and Jake. It means more than you'll probably ever know. I know that the spirit must have prompted you and you were moved to action and for that I am truly grateful. We were blessed today.

December 2011 - Update

We've just started the month of December and I have tons of posts to catch up on... still from September on up. Ahhhhh... life certainly doesn't slow down. We've just been having fun and trying to stay positive (as much as we possibly can) during this time. We've been pretty busy this fall. Oliver has been able to do so many fun and memorable things which has been fun to see.

Hospice currently comes every Monday to check Ollie's vitals and make sure we have anything we need. They will come more often as his health declines. Right now it seems like he's plateaued a bit which is better than declining that's for sure. The hard thing is that he could pass away in his sleep at any time or his health could decline so much that it could be a long, drawn out process of watching his abilities slowly fade away. He could lose his ability to eat, talk, walk, move, see, hear and eventually breathe. Throughout this journey I have prayed for no pain for him and that if it is Heavenly Father's will for him to pass away that He will be merciful and allow it to be quick and painless. I pray for a spiritual experience and to have the faith and hope needed to get to that difficult point in this journey.

We've known from the beginning that kids do not survive this type of brain tumor. It's like the black cloud of tumors hanging over the entire journey, not letting many rays of hope break through. I've had hope and faith in varying degrees throughout this journey, but I've known that the end wouldn't be the end I had hoped for. I know I need to have faith that all will be made right someday and that I will see him again. I do believe that. I just want him here. I've been watching lots of home videos with Oliver singing, dancing, playing baseball and capoeira and all sorts of other funny videos and I.JUST.WANT.HIM.HERE.

It is hard aligning my will with Heavenly Father's will. He knows all things from beginning to end and I just know what I know at this time in my life. I'm having difficulty fully letting him go. Anyway...

I wish it could have been another way. Granted... I know that he IS still here, but I KNOW where his path is heading. It just disgusts me. Why Oliver? Why THIS type of cancer? Why isn't there anything else we can do? WHY.WHY.WHY. AHHHHHHH!!!!

He looks nothing like he did in the videos we had been watching. I find myself thinking of that time, 'healthy Oliver'... and how different he looks and how much more he used to be able to do. It makes me so sad to have seen the decline in what he can do. He used to be such an active kid -- just a short, stocky, muscular kid runnin' around. It just blows my mind seeing what WAS and now what IS.

What do ya do?! There really is a loss of control at this point. A very tough place to be just letting nature take its course with the help of steroids. There may come a time when he decides to stop taking the steroids. I know he hates them. He calls them his 'fat pills' because they make him gain so much weight. He told me the other day that his face 'isn't my face, mom'. It's been hard to hear how he is feeling with regards to how he looks and what the meds are doing to his body.

Anyways... it's late... 5:30 am and I still haven't been to bed tonight. Just thought I'd post that he's pretty stable and we've been trying to do some fun things together -- making memories.