Oliver Update

He sees me pull out the camera and hides under the blanket!

Then this is the look I get! Sticking his tongue out at me!

Sweet boy

Papa's kisses are the BEST!

This is the look I get from Ollie when he thinks I've said or done something idiotic. I see it several times a day...

Finny sneaking in a hug.

I 'must-ache' you a question...

Hugs and loves from Finny boy

Fancy chocolate covered strawberries... um... yum. Also... notice his shirt my mom got him the other day. Ollie has always reminded me of Yoda -- short and full of wisdom.

Addison and Jaren

Jaren giving some crazy loves, Oliver and Uncle Chad

Natalie picking Uncle Ed's boogeys.

He's learning how to use the potty!

We received a package of ice cream from Cincinnati, OH and I KNEW it was Elena's ice cream! Elena was a sweet little girl that passed away from DIPG, the same brain tumor as Oliver. Her parents founded a pediatric brain tumor foundation called 'The Cure Starts Now' and this is her special ice cream!

You can tell by the look on Finny's face that he loves to wear girlie shoes!

On Sunday evening Oliver started having horrible stomach pains again and this time Ed and I figured it was his bowels again... the 'bowels of hell'. I can't hardly stand seeing him tilting his head back, closing his eyes and yelping out in pain. We didn't have anything for him, but Tylenol so we gave him that to try and help with pain and called Hospice to see if they could help us get something to help get him going, but they said they couldn't. His pain stopped for a while, but started again and so we ended up taking him to the ER because we just didn't know what else to do. We didn't have anything other than the stool softener we'd been giving him. They did some blood work and took an x-ray and confirmed that he was full of crap again. Poor kid. Last time they had given us some stuff for him to drink that really cleaned him out, but unfortunately they didn't give us any this time. They gave him a soap enema and that helped him out a little bit 'We need a cleanup in aisle (room) 6!" They told us to try and give him an enema and call our doctor in the morning who ended up prescribing him some Miralax. It was after midnight when we left the ER. We stopped by Walgreens and I ran in to pick up some apple juice and enemas while Ed and Ollie stayed in the van. Ollie was so tired after dealing with the pain. As I walked out I heard a noise that should not be coming from our parked van. I could tell that Ed had been having a hard time trying to start the van. AWESOME. So it's after midnight and we are stuck at Walgreens. Thank goodness Ed's brother and his family are visiting from California so he came to pick us up and take us back home.

The next day Ollie had a little pain and no bowel movements even after an enema. He hadn't eaten anything in a few days, but had some apple juice with his Miralax mixed in. Poor kid. He told Ed that he was ready to die. He's so sick of his body not working. He's been telling us many times that he wants a new body. I told him I would like a new body as well. So, after a few days he had a small bowel movement and has finally started eating a little bit again. He still chokes on everything, even his own saliva, and coughs for a bit until he can get it under control.

- Choking on food, liquid, saliva
- Makes weird noises in his throat
- On oxygen most of the time
- Can no longer walk
- Can no longer hold himself up when standing or sitting (he needs to be propped up with pillows)
- We are feeding him now.
- Wearing depends, using a urinal
- Sleeps more
- Can't understand much of what he says
- Can't type things out on the iPad because his fingers don't work anymore.
- Having headaches

Today (Wednesday) Ed asked him if he had a headache and he said no. Then Ed asked him if he was lying and he said yes. I know he doesn't want to worry us. Today it's been REALLY difficult to understand him, but I understood when he told me that he wants to die. He's trapped in a useless body. A body that is slowly falling apart. His ability to communicate is horribly diminished and he knows it. He is completely aware of everything that is going on. We tell him that he will not have to worry about his body in the next life, that everything will be restored. I just can't imagine what goes through his mind... he's 10 years old and knows WAY too much... is going through WAY too much. He is an UNBELIEVABLY amazing kid. Seriously.

When we aren't going to the ER or sitting in the Walgreens parking lot, we've been watching a lot of movies when he's awake. It's nice to lay in the bed along side of him and snuggle with him. He usually asks for Ed or I to come and sit or lay by him. I usually just lay my head on his shoulder and rub his arm, hold his hand and run my fingers through his hair. He's such a sweet boy.

His cousins have been visiting and they've been reading to Oliver and playing some games together. It has been really nice to have them here. Eden hasn't been going to school the past couple of days because she just needs to be home spending time here with us and Oliver. There are so many signs that point to the end of life being near that we've kept her home. I need to see what she's learning in school so she can keep up with her schoolwork at least. She's such a good student so I have no fears of her falling behind. Her counselor had talked with my mom and said that she's been a little more quiet than usual. She knows that Ollie doesn't have much longer. I can't imagine how she feels. They've been together for so long... her and Ollie are only 17 months apart and have played together forever it seems. It's been good to have her cousins that are her age here to play with her and have a bit of fun.

We've had several visitors in and out lately which has been nice. Lots of family have been in and out. Ed's coworker friend brought cookies by today and a sweet woman I met online brought by an awesome Harry Potter cake that her and her sister made. It was AMAZING!

Heather and her kids brought over the cake her and her sister made. Isn't it awesome?!

"GRYFFINDOR!"

Our Dance Marathon Family Rep came by with some Valentine goodies for the kids and stayed for some Butterbeer and Bertie Botts Every Flavor Beans. I had made some Pumpkin Pasties a few days ago, which are like small pumpkin pies that look like empanadas, but Ollie didn't care too much for those. She also played play dough with lots of the younger kids. We had fun visiting for an hour or so.

Giving Ollie his valentine.

Jaren modeling his sweet new hat Katelyn brought him.

I love seeing Phineas lay with Oliver and try and give him hugs and help him with everything. It's so stinking cute. There is so much love there.


I've been going through lots of old photos and there are so many darling pictures of Oliver holding babies -- mainly Finn and Jaren when they were younger as well as many friend's babies and his younger cousins. He's always loved babies which is just another loving trait of his that shines through.

During some quiet times I will read Harry Potter to him. We are in book 5 now and have quite a ways to go yet. I've also been reading him the Valentine's that people have sent him as well... to the 'Lovable Oliver Palmer'. He's been sleeping a lot, but we try and do as much as we can with him when he's awake, whether watching movies together or playing cards or board games... things he can still do while sitting propped up in his bed. He totally kicked mine and Ed's butts playing the Harry Potter Scene It board game and loves playing Scrabble on the iPad with Uncle Bryan. He always beats Grandma when they play each other as well. He's always been a great speller.


He also likes playing Family Feud on the computer as well. Ed and Uncle Jared have been asking him the questions and everyone shouts out answers. He's also really good at Wheel of Fortune. Seriously... if I were ever on a game show, I'd bring him! :O) Today the girls found a scary story book that had stories like 'The Hook' on the car door handle and so they sat around Ollie and Eden read aloud to him. They were so sweet with him. Ed has been reading several articles and the scriptures with him and talking about what to expect in the next life. I hope that has helped Oliver feel more at ease. He'll start to say things and then whimper and his lips start quivering and he'll start to cry and talk about death. Although I don't understand this trial I do feel like I will see him again and I hope that he knows that. I just don't want him to be scared or in pain in any way. I can't bear to see it. So we just keep plugging away and make memories. What else can you do at this point?

Happy New Year from HOGWARTS!

December 31, 2011 - January 1, 2012

I wasn't sure if Ollie was going to make it to the new year, but I wanted to make it special and memorable if he did, so we went all out for a Harry Potter New Year's celebration! I only had a day and a half to plan, but was lucky enough to have many decorations because of his new Harry Potter bedroom. Two of my good friends and their families came over for the festivities and helped me out so much throughout the night.

Oliver had gotten me the Unofficial Harry Potter Cookbook for Christmas and I was wanting to make some things from there, but just didn't have the time. Our house has been a constant disaster because we just haven't had time to clean. Our living room is a makeshift hospital room with all of Ollie's medical needs set up. We tried the best that we could to squeeze everyone in and make it a fun night. Ollie wasn't feeling well and stayed in his bed the whole time, but helped out in potions class and told me where to hide the snitch. He also got to have some butterbeer and was placed in Gryffindor House by the sorting hat, a gift he gave to Eden this Christmas. He was in and out of sleep, but hopefully had fun when he was awake.

***THE POTTER PARTY***

THE SORTING CEREMONY

Each child would sit on a stool and we'd place the sorting hat on their head and the hat would actually tell them, in a pre-recorded voice, what house they were in. Then they would receive a matching scarf to symbolize their house and the next child would come up. Oliver was first and I placed the hat on his head while Ed helped him lean forward. Of course he was placed in Gryffindor and so I put his scarf around him and he laid back down. Everyone clapped and cheered and he had a big smile on his face. It was so fun to see the kids reactions to what house they were placed in. Too funny! The hat would say one of these three things.

"Plenty of courage I see, not a bad mind either. There's talent, oh yes, and a thirst to prove yourself, but where to put you??? Mmmmm... difficult, very difficult... GRYFFINDOR!!!"

"I know... HUFFLEPUFF!!"

"SLYTHERIN"

Gryffindor - Oliver, Meghan, Kaden, Kael
Slytherin - Jaren, Briea, Cullan
Hufflepuff - Eden (She's Cho Chang and loved being in the same house as 'Edward Cullen')
Ravenclaw - Phineas, Ayla (ages 2 & 1)

THE FEAST
After the sorting ceremony we had a buffet set up of all sorts of finger foods. Drum sticks, a relish tray, chips and dip, little smokies, cheese and crackers and of course, Butterbeer. Amy made it with cream soda, Redi-whip, and butter flavoring. It was so good! Some of the little kids couldn't even lift up the mugs because they were so big! Ginormous... as Ollie would say. I wanted to make pumpkin juice, pumpkin pasties and rock cakes, but just didn't have the time. I'm sure we'll do it this week as I have all the ingredients.


THE TRI WIZARD TOURNAMENT
After we cleared off the food, we set up the potions class on the table where Ollie could see it as well. We had lots of old glass bottles filled with some potion ingredients. For example, white vinegar and baking soda which of course had cooler names like 'goblin pee' and 'crushed dragon bones'. The kids would take turns coming up and helping us add the ingredients. Briea, who will be 3 in March, gasped in amazement when one of the potions started bubbling and foaming up. So funny! Oliver even got to make his own potion.

*The First Task - Successfully brew your own potion. The kids were having a hay day with this! They used their wands, chopsticks, to stir their concoctions together.

*The Second Task - Create and draw your own crest. I printed off a downloadable coloring page off of the internet so they could fill it in themselves. They were excited about it and Eden ended up making two of them.

*The Third Task - Find the Golden Snitch. Since I knew Ollie wouldn't be able to participate in the hunt, I asked him where I should hide it and he pointed to a wall sconce with a candle inside of it. I perched it on the glass that covered the candle. We then told the kids that someone had stolen the golden snitch and Harry needed it for his next Quidditch match so we had to find it fast! They looked around the dining room and living room until Eden finally found it! It was fun watching the kids using their wands to look for it. Meghan had hers out and was using it to peek under Oliver's blanket trying to locate it. "Accio, snitch" didn't seem to work.

After each task I would give them Galleons, Sickles, and Knuts from Gringott's bank (chocolate gold coins) to spend later on. They were each awarded with their very own Tri Wizard Cup, a tiny gold trophy I got from the party favor section of the Dollar Tree. I wrote each name on the front along with the year. They loved it! I heard "I'm a REAL wizard now!" from the kids when they received them!


HONEYDUKES Candy Shop & ZONKOS Joke Shop

We set up a small area in the kitchen for the kids to go shopping and spend their wizards money. Dollar Tree had tons of candy and fun jokes and gag gifts to make it fun for the kids. We got large glasses, magic tricks, fake spilled ketchup and nail polish bottles, fake snakes and cockroaches and all sorts of fun tricks and gags. They could each pick out one thing they wanted from Zonkos and then off to Honeydukes where we had Bertie Botts Every Flavor Beans (Jelly Belly jelly beans), chocolate frogs and broomsticks, Licorice Wands, Cockroach Clusters (Hersey's crunch bar clusters), lemon drops, pop rocks and all sorts of other goodies to choose from. They filled their bags and their tummies!

Since Ollie couldn't make it out to the kitchen, I grabbed his bedside table and filled it up with all sorts of goodies, like the candy cart on the train that Harry Potter loves so much. I wheeled it over to him, but he still wasn't feeling well, so I just put some things in a baggy for him if he felt up to something sweet.

It was a memorable New Year's Eve for many reasons. We had fun with some good friends although it was a bittersweet night. Some of my friends where only visiting here from out of state and I knew when they said goodbye it would probably be the last time they saw Oliver. Difficult to watch and take in. It will be a fun memory of a Harry Potter New Year, but also the start of a year which will most likely bring lots of sadness and grief. So many different emotions.

After our company left, around 10 o'clock or so, I got in Ollie's bed with him and had some snuggle time. After a while he started gagging in his bed and so Ed ran and got a garbage can and I leaned him forward on the bed and he threw up. Poor kiddo. I don't know if he got the flu or if it is a symptom of the brain tumor. He said he had a headache the day before. I just don't know what to expect on any given day. He felt a little better after that and sucked on a candy cane to help settle his stomach and get the nasty taste out of his mouth. I laid there and ran my fingers through his hair for a bit while we talked. It's getting so hard to understand him now. He used a white board to write on for the first time today so it's definitely getting worse. I layed in bed and read a chapter in the fourth book, Harry Potter and The Goblet of Fire. We are nearly done with that book. I've been reading a chapter every night to the kids for the last several months. It's nice to have some relaxing time at the end of the day to unwind and have our minds wander to someplace magical. We also iChatted with Ed's brother, Jared and his family who live in California. They called us when the ball was about to drop, in our neck of the woods, and wished Oliver a Happy New Year. So... the night was filled with mixed emotions, but overall I think everyone had fun. I pray that Oliver will feel better and continue to have his sense of humor and handsome smile. We wish you all had a Happy New Year!

***for some reason blogger won't let me post pictures right now. I'll have to try again later!