"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.

Pancake Breakfast Fundraiser for Oliver

When: Saturday, November 5, 2011
Time: 8:00 am - 1:00 pm
Where: Edison Elementary School
740 Magnolia Pkwy.
Waterloo, IA


Facebook Page -
Pancake Breakfast Fundraiser


Waterloo Cedar Falls Courier newspaper article -
(Monday, October 31, 2011)
Benefit planned for Waterloo boy with brain tumor

MRI -- November 2, 2011

Tuesday, November 2, 2011

Early this morning Oliver had his regularly scheduled MRI down in Iowa City. We traveled down last night and took Jaren and Oliver to see 'Puss in Boots', which they liked. We all got up at around 6 am and headed to the hospital with my mom and brother, Bryan. We always have the MRI first then meet with Dr. Buatti to discuss any symptoms that Oliver is having as well as the scan. It seemed like this MRI took a particularly long time. Ed went in the room with Oliver as he usually does while I waited in the waiting room with my mom, brother and Captain America (Jaren -- we got the costume the night before for 50% off and he LOVED it! -- it's the little things!)

After his scan we walked to radiology where we were led to a room, as usual and waited to hear from the doctor. A resident came in and did some strength and sight tests with Oliver and asked us some questions about medication and the symptoms that he was experiencing. Then we talked with Dr. Buatti. He told us that the tumor had grown. My mom took Oliver out into the children's waiting area as we had some other questions for the doctor.

I asked how much it had grown and he showed us the scan. You could see that it had gotten bigger. It doesn't take much growth to start causing problems as there isn't a whole lot of extra space inside the brain to take up. I asked about reirradiation, something that some DIPG kids have undergone recently, but he didn't feel comfortable doing it because the growth was in the exact same area as it was before and he didn't feel it would help. I knew it wasn't a cure, but longed for anything to provide more time, however I don't want to prolong this journey if there is any pain or discomfort. I also asked the dreaded question... "How long do you thing he has?" Obviously no one knows. He said maybe 6 - 8 weeks. Could it be 4 months? Could it be 3 weeks? It could be any time now. When he started to say '6 t0 8......' I thought he was going to say 'months'.... not 'weeks'. It still doesn't seem real. I also asked if he sees many patients with DIPG and he said a few every year. I wish I knew who they were so we could gain support and strength from one another.

We then talked with the pediatric oncology nurse practitioner who is going to be calling Hospice to set a meeting up for us. We talked with the social worker down there who has been really nice throughout this journey. We also asked about how to donate his tumor for further research. We still need to pray and talk more about this. I just wanted to discuss our options before things get too emotional for us. It doesn't hurt to find out. There HAS TO BE more research done.

We always talk with the radiation techs whenever we are down there for an appointment and I asked Dolly, a woman that helped him with his radiation mask and stuff, if she could find Jen and Mike for us because Oliver was down in the children's waiting area. Oliver was taking a nap with Uncle Bryan on some giant pillows down there so we woke him up so he could see them before we left. They have been so nice to us during this journey. They ALL have. Jenn talked with us a bit and then Mike came down the hall. We talked a bit and hugged and teared up. It's hard to keep it together sometimes.

After they left we talked with a child life specialist who gave us a packet of books to read to the kids about death and grief. We talked about making memories and keepsakes for the kids and even took a fingerprint of Oliver to make into a necklace. I'm worried most about Eden because she's known Oliver the longest (they are 17 months apart) and is the oldest of the other three. She 'gets' more of what is going on. She's been seeing her sweet school counselor, who tutored Ollie last year, since Oliver's diagnosis. I may have her start going to a sibling support group once a month down in Iowa City as well. She's been starting to become pen pals with other kids that have siblings that are battling or have passed away from DIPG. I've read a bit about how children of different ages deal with grief differently. Eight year olds think the world revolves around them and what is happening that day. Four year olds may ask where their sibling is over and over again. I just pray that Phineas will know Ollie through us. I hope and pray that we will have the strength to get through this and be able to give all of our kids what they need. It's so overwhelming.

OVERWHELMED... this describes me these past two years. EXHAUSTED... I'm sure I will know this even more after this leg of the journey is over. I've heard this part is so difficult. I've already felt stretched more than I can imagine... in every single way... mentally, emotionally, spiritually, physically. At times I feel like a wreck just holding on by a thread. I can only do the best that I can do. I keep thinking to myself... don't try and run faster than you have strength. I'm trying to pack a lifetime of memories into two years of my child's life. I think we need to slow down and just enjoy what time we have left. You just want to do all you can to make them happy... to make all of their dreams come true. I think there is a Killers concert in Chicago sometime this month. The kids are always singing 'Human' which I know I have videotaped several times! Brandon Flowers, the lead singer, is a mormon or LDS, just like us and his mother unfortunately passed away a few years ago from a brain tumor. I would have LOVED for him to meet him. One of his other favorite songs by them is 'Don't Shoot Me Santa Claus'. I'm still going to try and find some tickets. He's never been to a concert before and it would be so cool to see them in person!! There are just so many things that as I parent I would love to see him be able to do, people that he would love to meet. We watch Jimmy Fallon most nights together and Oliver LOVES all the games that he plays on there. We are always busting up laughing. He loves Ninja Pinata, which is one of my favorites as well! I know he'd love to meet John Cena, who actually sent him an autographed picture and whose motto is 'Never Give Up'... how fitting for a young child dealing with the biggest test of their life. I would love for him to meet Brian Regan and Jim Gaffigan and tell them that we listed to their shows over and over every ride to and from all of his radiation appointments and laughed and laughed until we couldn't laugh anymore. Ollie had all their jokes memorized at one point in time!!! It was so fun to hear him crackin' jokes and then sneakin' in a smile afterwards. I just love his dimples when he smiles.... just love 'em. Okay... now I'm rambling.

After we left we headed for someplace to eat. Oliver wanted somewhere with a pool table and we usually go to Old Chicago but they don't have one anymore so he wanted to go to Buffalo Wild Wings because of the trivia games you can play at the table versus other teams throughout the restaurant. So if you see a team by the name of 'Spooky' you know they are there playing!! :O) He ordered some cheese sticks and was in heaven eating those. We had fun with Grandma and Uncle Bryan there, too. After lunch, Ollie rode home with them so that Ed and I could make some important phone calls to family and friends that we didn't want Oliver to have to over hear. The whole way home I would be okay one minute and bawling... 'the ugly cry'... the next minute. My eyes are burning while I'm typing all of this. Life just doesn't seem real right now. Sometimes I feel okay, sometimes I feel like I'm completely on the edge and bawl at the drop of a hat. At least Jaren was in the car, belting out "Human" for us to make us laugh and then cry because it's one of Ollie's favorite songs and made my thoughts turn back to him and what is taking over his body. I'm just at a loss.

It was raining the whole way back home, how fitting that even the heavens are weeping. Hospice called while we were just getting back into town and we set up a time to meet with them in our home on Friday at 11 am. I suppose we will learn more later. My biggest priority is dealing with any pain Oliver might be dealing with and that we can all be together as a family at this time. I need all the prayers I can get. Please grant me patience, understanding, serenity, peace, strength, faith, and an increase in love and hope.

We talked about funeral arrangements and will be looking into those things the next couple of days. Headstones, cemetery plots, funeral home and such. I also am looking into different memory making activities or crafts that we could do together or individually as a family to honor and remember Oliver if the time comes where he won't be here. I got several things at Micheal's to do handprints and such. We'll be working on those soon!

He was crying tonight when we were talking about how he touches peoples lives and he said that he's only touched one person's life... a little boy at McDonalds a few years ago, Oliver gave him his toy that the boy wanted. Ollie said it made him feel special inside because he was thinking of others. It made me so sad though to think that he really doesn't feel like he's touched people's lives. I want people to think of how he has touched their lives and if you would like to write him or us a letter telling him how he's touched your life or changed it, please send it to us at:

Oliver Palmer

417 Oaklawn Avenue
Waterloo, IA 50701

I think he could really use that knowledge right now. I hope that he'll get some mail and see that he's touched people that he's never even met! He is such a sweet, compassionate and loving kid and always has been.

We talked with him about his fears and Ed told him more about why we are here and what this life is for. I think that eased his fears a bit. I can't imagine being a 10 year old kid and knowing that you were going to die in the near future. It makes me queasy to even think about. He's so brave and strong and NEVER EVER complains about any pain or anything. I need to take some lessons from that kid... we all do.

Anyways... I hope that he will get some upbeat letters soon to show him that he is in fact loved and that he has 'TOUCHED PEOPLES LIVES".

Thank you all so much for the continued prayers that have been offered in our behalf and keeping Oliver so close to your hearts. He is always continuing to amaze me. We'll keep everyone posted as to how he's doing. I still have a bunch to blog about from the last two months of craziness so don't forget to scroll down as I play catch up. Thanks again...... <3