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.

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

"Blessings"

"We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise"

Day 6 Florida - ISLANDS OF ADVENTURE

Saturday, September 10 , 2011

Islands of Adventure is by far my favorite place to visit down in Florida. The people that work there are always so wonderful and caring. I love all of the colors and artwork that goes into the decor of each 'Island'. The artist in me was in awe all day long! The 'Islands' are 'Seuss Landing', 'Jurassic Park', 'The Lost Continent', 'Toon Lagoon', 'Superhero Island' and 'The Wizarding World of Harry Potter' (we didn't get to see that last year because it wasn't open yet).

Ollie lookin' cool this morning...

View of Superhero Island

Our first view of Hogwarts!

*THE LOST CONTINENT*

**WIZARDING WORLD OF HARRY POTTER**

Jaren, Eden and Ollie in front of Hogwarts

*Welcome to Hogsmeade*

The ride inside Hogwarts 'Harry Potter and the Forbidden Journey' was my favorite ride of the day. I think I'll copy this picture for the kids' bedroom.

Eden in front of the Gryffindor banner.

Loved all of the snow on the crooked housetops of the village!

Quidditch gear

Dogweed & Deathcap

I wished we could have eaten here at the Three Broomsticks, but the food was all seafood. BLAH... and I think reservations were required.

Honeydukes Sweet Shoppe
Earthworm, ear wax, sausage, vomit, soap, and rotten egg flavored jelly beans = not happiness.

Of course we had to get Ollie a chocolate frog!

ZONKO'S Tricks & Jokes

Puking Pastilles

Wizard's Chess, Ollie wants to get a mini version of this for Christmas.

Ollivander's Wand Shoppe
If you look closely you can see all of the wand boxes piled high in the windows!

The golden snitch

There are about 30 people let into this room, Ollivander's wand shop, and one person is 'chosen' from the crowd to have the show based around. Mr. Ollivander came up to Oliver before it started and said to stay afterward and he'd have something for him. After everyone left it was just us in there and he had the wand choose Oliver, with the spotlight shining on Oliver as the music rushed in. Oliver was ALL SMILES and of course I was ALL TEARS when he said that Oliver would make his mark on the world. How fitting for Oliver at this time in his life.

Mr. Ollivander -- This guy was great!
"The wand chooses the wizard..."

Jaren, Eden, Oliver

A worker there at the wand shop saw me being teary eyed and I told her about Oliver's condition and about how it touched me to hear that 'he would make his mark on the world'. I think it was something that I truly needed to hear. She was so sweet and surprised us a few moments later with some butter beer so we didn't have to wait in line outside!! Seriously... the people that work here are the best I've ever seen. They just go above and beyond for the families. Amazing.

Butter Beer = Frothy Goodness

Cute snowman at Hogwarts

**JURASSIC PARK**

Ed and Ollie waiting in line for some rides.

The Jurassic Park River Adventure was like Splash Mountain on some serious steroids!! We were SOAKED after we got off of that one, however I have to say that Ripsaw Falls was the wettest ride I've ever been on in my life. I felt like I was drowning from being doused so much! The kids did NOT like this ride because grandma said that they went on it and only got a few sprinkles on them. The kids were not happy afterwards.

Grandma (Where's Waldo) and Ollie

Bear being weird as usual. Gee... I wonder where he gets it...

Oliver making a wish to have a good day with the family.

**Toon Lagoon**

Knowing Ollie, he's probably letting off his own little Hush-A-Bomb in his pants!!

Playing the water gun racing game

**SUPERHERO ISLAND**

We are usually here for the longest time. I grew up with two older brothers and know all about comic book characters and whatnot, so this was a pretty cool place to see.
Oliver grimacing like the Incredible Hulk while cradling Homer like a baby in his arms! HA!

Behold the awesome art in the restaurant we ate at.........

Oliver -- It looks like the wasp is landing on his head! (His t-shirt is very fitting for the day.)

Jaren and Uncle Bryan

The Green Goblin lurking next to a woman that didn't realize he was there!!!

Spectacular Spider-man

Dr. Doom and Jaren

Cyclops

Wolverine

Captain America (Check out Jaren's t-shirt)

Eden and Storm, who Jaren refers to as "Thunder Storm"

Eden and Rogue

Grandma and Eden

Ollie enjoying some Dippin' Dots and mom FINALLY getting him to smile a REAL Oliver smile!

Awesome Hulk car. LOVE the eyebrows on the windshield!!

*SEUSS LANDING*

Had to get a pic of Eden and the Truffula trees from Dr. Seuss' 'The Lorax' for Grandma Palmer as she always reads it to the kids!

Love all the candies!

Yummy gummies!

Caramel apple time!

Me and Eden

Hogwarts at sunset.

Oliver and the 'firebolt', Harry's sweet ride.

Eden getting ready to head to Hogwarts!

Oliver, my Triwizard Champion!

Harry Potter or... Simon from Alvin and the Chipmonks?

Eden and the award she presented me with!

Eden and Ollie

Quidditch gear

Everyone was laughing when they saw Jaren conked out in the stroller after a long day!

Eating a late dinner at NBA City at Universal's City Walk because I knew that Ed LOVED basketball when he was a kid. He still likes basketball so I thought I'd let him pick the restaurant for the night.

Dennis Rodman -- Ed says he remembers watching this game happen on T.V.

Oliver's jersey design with a bird on the front.

Goofy kids!

Bear and Papa

The menus felt like basketballs!

The floors looked like a court and evidently Jaren thought it looked like a dancefloor!

Must have eaten something that he was allergic to. Redness around his eye and cheek with blotches around his mouth. Still the cutest kid ever.

City Walk is amazing at night all lit up with music playing. Jaren couldn't contain himself!