Oliver's Journey

Rough Week

2012-02-13T23:06:00.000-08:00

Oliver is currently at the hospice home here which is a few blocks away from our house. He no longer talks or moves on his own. We are currently making funeral plans as he may only have days to live. He hasn't eaten for several days and doesn't drink much. He sleeps nearly all day, maybe 20 hours of the day. I'll try to post updates when things change. Thanks.

Tdoay, you were far away...

2012-02-10T02:49:00.000-08:00

Stacy has told me I should post to this blog and so I here "entrude". Today has been a day where "tough" is abject nugatority (yeah, I probably made that word up). I have often thought upon the irony of my name: E-D. The following verse has been running through my mind the last few hours:

"Tonight you just close your eyes
and I just watch you
slip away

How close am I to losing you?"

I don't mean this to be a melodramatic post...I need it to be a post of supreme gratitude. Please be aware that I believe in the axiom that God does notice us...that He does watch over us, and that it is usually through another person that he meets those needs: therefore it is vital that we serve each other. There has been an outpouring of this facticity so pervasive in my life...especially in the last two years that I am literally overwhelmed by it. There is no possible way I could thank each and everyone of you for all that you do for my family; and with that realization I have to trust the God who knows what the left hand doeth (even if the right hand sits in the dark) to reward openly, knowing it will be far better then anything I could do. Please be aware of my gratitude and my love for you all. I am contended that charity suffereth long and seeketh not her own...

Oliver Update

2012-02-09T01:29:00.000-08:00

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?

"It's my blog, I can vent if I want to..."

2012-02-08T23:24:00.000-08:00

Sick to my stomach just pissed off about life. So many things running through my head right now. One thing that has bugged me since the day Oliver was diagnosed is that MOST (not all) of the people I know personally have failed to provide support I have needed and that the kindest, most encouraging words have come from strangers that I've met online and who have followed this blog. I have come to the realization... well... many times I've noticed that people on facebook commonly comment on stupid, random crap people put on their page and that there are very few people that I know personally that provide any uplifting support over the last 2 years of this journey. Usually there are words from complete strangers whose paths I just happened to come across. What does that say about the people that I know? I really wonder about that. I want to tell them that if you haven't been here through the last two years not to bother to come to Oliver's funeral when the time comes. Don't act like you care about him or the rest of our family when he's gone. I just don't understand people. I really don't. I don't even want to have a funeral because I don't want to be angry. I'm dealing with so many other emotions right now and I'm sure they will just get worse when that time comes that I don't want to see people that I would have thought would have been more of a support through this journey and want to drop kick them during the service. I'm sure I'll have to have my fake smile plastered to my face... the same smile I have to have on when someone says something that their brain should have filtered out... you know... something hurtful or ignorant with regards to my dying child or how I 'should' be doing things. This feeling has gnawed at me throughout the last two years as people have continually lacked in support, encouragement and understanding. I KNOW that I 'should' and 'need to' focus on the positive people, but I just can't help the feelings that I've felt on and off for the last two years. Obviously... there have been some WONDERFUL people that have shown their love for us... usually people I don't know well or complete strangers. I know there are friends and family that live farther away that would help support us and provide the much need relief from this EXHAUSTING journey. These are the people that make me want to be better. I guess I could say to some extent that the people that have failed to be here have made me want to be better as well... to not be idle in my service to others or just being there when times are too much to bear. Aren't we supposed to bear one another's burdens??? To comfort those that stand in need of comfort??? If there has ever been a time in MY LIFE when I NEED comfort... it is during this journey and I feel like I have slipped through the cracks to my own personal hell with no one in sight to offer a helping hand. I get that people can't read minds and so I've had to speak up, but some things you shouldn't have to ask for. It's like begging... which I'm not a fan of. Granted... the past month or so when Ollie's health has really started to decline, a few more people have stepped up to help in many ways, providing us more time to spend with Ollie, however even then people seem to 'forget' about us. I know people aren't perfect and I know I need to give people the benefit of the doubt, but when things happen over and over again it's hard not to feel like you are not cared for enough to be remembered. I know I 'need to' be more grateful, but at this moment... it's my blog, I can vent if I want to. You really don't have to keep reading.

Another thing that has been gnawing at me for a long time that I feel I need to address here for other people that may feel the same way is that sometimes life just sucks. Period. I see all the wonderfully and disgustingly optimistic quotes on facebook about admiring the people that have every reason to break down but still smile or still hold it all together or some crap like that and I just think... I think someone incredibly ignorant came up with that. Someone completely oblivious to the pain and emotional turmoil that comes with watching your child slowly dying. Hearing your child tell you that they 'just want to die', that they 'want a new body'. I mean... really? Is their world unicorns and lollipops all the damn time?! Because really... when people post those redonkulous quotes on fb I just want to punch them in the face because underneath the wording of the quote it makes the people that do have breakdowns... justifiable breakdowns... feel like a worthless, weak piece of garbage because they 'should be strong enough to hold it together'. Yeah... really?! Does anyone else hate those quotes as much as I do? Am I just reading into it too much? It just really gets under my skin. This journey is a challenge, emotionally, physically, mentally, spiritually, financially. Take a mental illness where you want to hurt yourself on a regular basis and always feel like a failure at whatever you do, add a child dying from a cancer the medical field doesn't know much about, other health difficulties of other children, add a crap load of people that act like they don't care about you and top it off with a few sprinkles of crappy quotes that make you feel even worse about yourself and there you have it -- a sh*t sundae with a whole lot of toppings I could really do without at this point in time. *I could just scream* Anyways... life is hard... I'm struggling to see the silver lining... I'm just struggling. I'm in so much emotional pain that sometimes I just can't bear it. I've been having panic attacks lately, at least I think they are panic attacks. It just seems to come out of no where and blindside me and my chest fills up, I feel like I can't catch my breath, crying out of control, shaking and feeling like I'm going to pass out. I've been dealing with a change in medications lately, trying to take care of a constant physical pain throughout my body thus adding and subtracting medications here and there and feeling horrible withdrawals and noticeably not being able to keep my head on straight. Sunday was one of the worst 'mental illness days' I've had in my life. I won't go into detail, but I'm sure I probably should have committed myself to the mental ward at the hospital. That is another thing I wanted to address for anyone listening... the topic of suicide. I am certainly not saying go and do it. Nothing could be further from the truth. However it is a struggle to choose to stay here and go through all that life is throwing my way. When I think of how many times I've actually thought of different ways to end my life it scares me. On my good days it's frustrating and maddening to accept that I have those thoughts. You truly feel weak and insignificant. You feel like you can't physically or emotionally handle the trials of life. The 'shoulds' float through your mind and you take a mental inventory of all the things that you are failing to do... failing to believe. You see yourself as a burden to everyone around you and truly and honestly believe that they would be better off if you weren't there. You try and see what their lives would be like with you there and then with you gone and you compare the two and think... which one is worse for them?? It feels like a selfless process. You want those you love to be free from the pain that you feel you cause them. Some people want to be free from chronic physical pain and so many other things. These are REAL feelings, although probably incredibly distorted, they are real. These thoughts and feelings flood your mind and take over. I guess I can only speak for myself. When I think back to conversations I've had with people about suicide and the off handed remarks about how selfish that person was to do such a thing, I just think how ignorant people are. I think about the person that took their life and what they must have been feeling. How life's trials were breaking their spirit, ripping their world apart. So many people just think you can smile your way out of depression and mental illness. 'Just smile and count your blessings... and you will be just fine.' Ummmmmmmmm....... nope. If it were only so easy. We would LOVE to break free of our illness. It's a daily struggle with our own minds. We never get away from ourselves. It would be lovely not to have to deal with our distorted thoughts and emotions, but somehow life just isn't that cut and dry. It is not simple. It is a struggle. A horrible struggle to try and manage and overcome the thoughts that loom in our minds always threatening to push us over the edge. It sucks. It just sucks. Every single day I'm still here is a battle won. Nothing anyone on the outside looking in would ever realize or congratulate you for. It's a quiet and lonely fight that you just have to congratulate yourself for overcoming that day.

I sit here thinking to myself... "Do I reread this blog post and should I take things out that may offend people?" I think not. It's my journal of my life's dealings and how I'm getting through it. I should hope that someone may find inspiration in understanding that we are all human and are still good people even if we experience breakdowns and setbacks. I for one feel like I'm not alone in the world when I read about someone that has had breakdowns and are still moving forward. I don't connect with those that always wear a smile for everyone else to see only to try and project a perfect life into the world. We aren't perfect... we aren't expected to be perfect. I hope that this is just a dip in my journey. Maybe tomorrow will be brighter... more optimistic. I'm only human... what else do you expect from me? I need to keep reminding myself every day that I'm only human...

Valentine's Day - "Let's SHARE THE LOVE"

2012-01-30T23:48:00.000-08:00

Valentine's Dinner 2007

Valentine's Day is the one of best times of the year to let someone know that you love them. Our annual Valentine's Day dinner is one of Oliver's FAVORITE family traditions that we started when he was probably 3, so for the last 7 years, every Valentine's Day dinner is spent with our family... the ones we love the most. We go all out and have candles, rose petals, dim lights, light classical music playing in the background and fancy Italian foods.

I think it would be fun to challenge everyone to tell at least ONE person in your life how you feel about them... good feelings... we are trying to spread the love here!!! Sometimes we let life get too crazy, we are too stressed and overworked to say those three simple words. People need to know that you love them because you never know when life will no longer give you that chance to say it. It doesn't matter how you do it, face to face, in a card, poem, song or through a gift of service. Be nicer to one another and the love will more easily flow. Anyways... just a thought. Oliver has inspired me to be kinder to people and has made me realize that they may need the love that someone is not giving to them. You never know the pain someone is hiding behind their smile.

LOVE NOTES to OLLIE
If you'd like to send Ollie a Valentine's Card and tell about the effects of your challenge that would be great! I don't know if he will make it to see Valentine's Day or not. Things have been happening more and more that lead us to believe that he may have weeks to days left. I'd love to see his face when he gets the 'love' notes from people that he's inspired to do better, to be better and to keep trying no matter what. I know it makes a difference to hear it from someone other than just mom and dad. :O)

The Lovable Oliver Palmer
417 Oaklawn Ave.
Waterloo, IA 50701

I'm trying to think of other special things to do this year to make it a little more special for him since it may be the last holiday we get to spend with him... if we are to be so lucky. Thank you for sharing the love!!!

No more traveling...

2012-01-28T17:48:00.000-08:00

Saturday, January 28, 2012

Well... tonight was a difficult night. After nearly two weeks of not being able to go outside with Ollie, we borrowed a van with a wheelchair lift to go out and get some fresh air and a change of scenery for Oliver. After 10 minutes in his chair he wanted to lay down. We were going to take him to see a movie and go out to eat, but opted for dinner only and even that was difficult. It is hard for him to keep his head up without pillows now. He says that his back hurts more when he's trying to sit up and that his butt gets sore when he's in a certain position for a while. Ed has also been feeding Oliver more and more often. He just can't get his hands to grip the way he used to. Poor little man.

We had been hoping to go to Dance Marathon this year, which is an annual fundraising event for the Children's hospital down in Iowa City and a 24 hour event for the kids and families to honor those kids fighting and remember those that have passed away. We ALL look forward to this fun filled and emotional event each year. This would have been our third year attending. It is so close, but I just don't think Ollie will be able to make it. Eden is really bummed out, but understands why we aren't going to be able to go. We'll be there in spirit.

It's harder to understand him when he tries to tell us something so he doesn't talk as much. He had lots of visitors today, Grandma Young, Uncle Bryan, Uncle Chad, Grandma and Grandpa Palmer, Grandma and Grandpa Boardsen and his friend Takota came over to play for a few hours. They played video games and used the remote control helicopter that my mom, Bry and Chad brought over. The kids... well... the boys LOVE to play with it, but the charge in it doesn't last very long. Finny likes to have the helicopter take off from on the top of his head... weirdo. :O)

We got a fingerprint art book and Eden has been going to town coming up with stories and fingerprint pictures galore! It's so fun to see the kids love arts and crafts as much as I do. I need to get some other memory making things ready for the kids to do. My mom also bought her a book where she can design clothes for paper dolls which she loves. She's a girl after my own creative heart!

Jaren has been playing with more action figures, mainly superheroes... Spider-man and Captain America are his favorites and watching plenty of Spongebob on the portable DVD player in his bedroom. We've also been playing Spongebob Yahtzee, a game he got for Christmas. He still has his eating and breathing issues that we need to address soon. He has an auto-immune disease, Eosinophilic Esophagitis which has no cure. He hardly eats a thing and never has. Ever since he was a baby, he would choke, gag and eventually throw everything he ate up. He pretty much subsists on soy baby formula, crackers, cereal and baby food sweet potatoes and bananas. He may need to be placed on a feeding tube until he can eat 25 different foods. But, of course we have to wait until things calm down with Oliver's medical needs. Right now we try to get him to at least lick different things at dinner time, but even that is nearly impossible. *SIGH* Parenting is hard.

Finny has been playing a lot with Jaren and still the busy body around the house. He and Jaren play upstairs together more and he has started to play a bit by himself as well. Luckily he still has his one nap a day so he's not a complete beast for us. He is definitely into more things than all the other kids combined. He wears Ed and I out on a daily basis, but man... is he a cutie boy! I can't stay mad at him long, even when he just randomly dumps a whole cup of water on the kitchen floor.

Ed and I are just getting by. Trying to do what needs to be done and hope that all things come out for the best. What else can you do?!?

Please keep Oliver in your prayers...

DIPG Kids - Sweet Valentina

2012-01-27T01:56:00.000-08:00

VALENTINA BRAVIN

Age: 5
New York
Diagnosed on 7/21/11 at 4 1/2 yrs old.

Valentina Bravin's caring bridge site

This was taken from their most recent blog post about Valentina's health...

"Unfortunately, this most recent MRI report of 1/12 indicates disease progression as well as spreading into the cervical spinal cord and other local areas of the brain and auditory canal. Not at all what we expected to hear. Talk about being blindsided..."

"PROGRESSION" is a term that no parent wants to hear with regards to cancer. It means that the tumor is growing and usually growing rapidly. With DIPG... progression usually means there is nothing much more they can do for your child. The 'grasping at straws' portion of the journey. Whenever I hear of another child going through the different stages of the journey it really makes my heart stop. I can put myself in their shoes and can understand what they are going through at times, while other times, I can only imagine what lies ahead for Oliver.

Please keep Valentina and her family in your prayers. We ALL need something to hold us up and gift us strength to deal with so many things on a daily basis.

DIPG Kids - ANGEL Ashlyn

2012-01-27T01:41:00.000-08:00

Ashlyn Breanna Poole

Forever 21
7/31/90 - 1/23/12

One of Ollie's original works of art!

Please continue to pray for the other children battling as well as the families that have recently lost their children. A sweet young woman that I've been following passed away on the 23rd. Ashlyn Poole was 21 years old, from Virginia and had a cat named, Oliver. Of course I felt an instant connection to her! Oliver even drew a picture of her cat for her on her birthday which is in July as well. Her mom said that she had it sitting up on her dresser so she could always see it. They ordered a Team Ollie t-shirt that she proudly wore to her check ups. She seemed like such a sweet and loving young woman. I would have liked to have met her and her family. Please pray for her family, her boyfriend and all that loved her. I know it is a devastating loss for them all.

Ollie Update - January

2012-01-23T03:19:00.001-08:00

Finny 'helping' Oliver with his oxygen tubing.

I love the sweet look on Finny's face as he 'helps' Oliver wipe his mouth. Ollie has been so patient with him and all of his... 'help'.

I love seeing this. See his hand gently wrapped around Phineas? Makes me smile.

Jaren, 4 1/2 and Phineas, 2 -- LOVE Superheroes!

Love the looks on this kid's face AND the collar hanging out of the costume! It must be Spider-man's formal attire.

Ollie LOVES eating at Tokyo... a local Japanese steakhouse. He can still use the chopsticks like a pro when he eats his steak, although both of those abilities he's losing every day. He gets cravings at weird hours of the night and just dwells on them until we go a few days later! He'll also randomly say things that he wants us to get either from the fridge or the store. I was walking out the door for a class the other night and he yells, "French Onion Dip!" He constantly makes me laugh! He's so random sometimes!

Eden made this sign and put it on our bedroom door. She was doing 'yoga' with Jaren. These kids are too funny with all of their signs and witty comebacks.

Eden pulling Finn and Jaren all over on the blanket. Love hearing laughter throughout the house.

"CHEESY!"

LOVE the look on his face! Thank you for the JOY JAR! Sadly, Jessica, the young lady that came up with this idea passed away earlier this month from a brain tumor. Please keep her family in your prayers.

January 24, 2012

In the span of two days, we've received so much snow. There has been no snow all winter until now. Since it's been snowing Ollie hasn't been anywhere. His ability to move around has declined. We don't have a ramp for his wheelchair yet and nor do we have a wheelchair lift for our van. So we had the sacrament (bread and water) brought to us on Sunday to be blessed and passed around. It's harder for Ollie to move. He can't sit up on his own anymore and needs pillows to prop him up whether he's lying down on the couch or in bed or propped up to watch TV or try and eat. When he eats, he chokes several times throughout the course of the meal which is scary to watch because I don't know if he'll stop breathing or start to throw up. His speech is worsening as is his breathing. He's on oxygen all of the time. When his cheeks are red that means that his body is trying too hard to get oxygen. It's hard to see him hooked up to the oxygen and having to be propped up with pillows. He's gets frustrated lately because he says, "I just can't do anything anymore!" It's hard to get him up to walk even with us helping him the whole way. He uses his urinal most of the time, but Ed tries to get him to exercise his legs by helping him shuffle to the toilet. He generally sleeps with just a shirt on because his open sores are in his groin area and I think it just feels better when undies aren't sitting on the irritated area. I used a warm cloth to clean that area when I first found out that they had opened and started to bleed. I can't lie... it made my head spin and made me feel queasy. This is why I can't become a nurse. I can't deal with blood and bodily fluids and seeing open wounds. I just don't want him to be in pain and he still really doesn't complain about pain. He says he's been nauseas the last few days, but no vomiting. His speech is more difficult to understand, but he still smiles, still has his sense of humor and that laugh that I've loved since I first heard it come out of him. Please continue to pray for his health, for strength, peace, comfort and that he won't be afraid.

Ollie has been watching several movies and TV shows on Netflix, one of which we've all been watching together called 'Cake Boss'. They make these AMAZING specialty cakes and all sorts of other pastries. Since they are located in New Jersey, Ed looked online to see if they ship to different parts of the country, but they don't. Boo. That would have been fun to try some! It inspired me to bake for once. Ed loves carrot cake, but whenever I find some at local bakeries they have nuts, which Ed hates and happens to be allergic to, thus dubbing them 'poisonberries'. So Phineas and I made some from scratch last night. That kid LOVES helping me in the kitchen -- whether we are cooking or sweeping up, he's always ready to 'help'! So cute.

So we made it and then I 'dirty iced' the whole thing... I'm picking up some sweet terminology from the show! Anyways... it turned out pretty good for my first ever carrot cake!

We've also been trying to do some crafty things, designing plates, drawing, hand print crafts. It's hard to see that Oliver is losing a lot of his motor skills. He can't really draw anymore, which is something he really started to love doing, especially when he couldn't play sports anymore. It's hard seeing the loss of things he loves to do. I ordered some 'Harry Potter' games online for us to play, Uno, Clue and Scene It and so they should be here in a few days. I'm planning on making some Pumpkin Pasties, Rock Cakes and Butter Beer (Ollie got me a Harry Potter cookbook for Christmas) as well as chocolate frogs and Bertie Botts Every Flavored Beans I ordered online. Since he can still play games and cards I thought that would be a fun thing to do with him.

The other night while all the kids were in bed, Ed and I talked about funeral stuff for Oliver, which was difficult to think about. I just don't know what funerals entail since I really haven't been to that many. There was a free online planning service offered by a local funeral home that we used to figure out what things we need to plan for. It's still so hard to think about... even though it is our reality and will most likely be happening soon.

January 26, 2012

Things seem to be getting worse on a daily basis. He slept a ton today which is not a good sign, but I figure that at least he's not in any pain which is a huge blessing. Moving him around has been getting more and more difficult every day. He mainly shuffles from point A to point B with help from at least one to two people. He mainly just lays on the loveseat or is propped up a bit with pillows in order to sit up for a while. I just feel so bad for him. He does not look comfortable at all. Just not a great quality of life right now. I just know his journey is nearing the end and I hope I will be ready to accept the fact that he will be free from his earthly body that is betraying him. His body is giving up on him and he is aware of every single loss in ability which has got to be horrifically frustrating. I just watch him laying down a lot. I watch his face, his chest moving up and down and I wonder what he's dreaming about. He whimpers a lot during his sleep which makes me wonder if he's having nightmares. We have a lot of decisions to be made with regards to funeral arrangements and brain tumor donation. It's overwhelming to think about. Do we talk about all of this with Oliver? I think we will. He knows what is going on anyways. I want to make it as special as we can.

Thank you again for all of your prayers for Ollie and all the kindness you have shown him and our family. It has been difficult for me to ask for help. I am grateful for the help with dinners, cleaning and babysitting so that we can spend more time with Oliver. It has helped lift our load tremendously, so THANK YOU.

Music and Lyrics

2012-01-22T02:59:00.000-08:00

I've been listening more intently to music lyrics lately, mainly the music of The Killers since those are the CD's that are in my van and my kids are always requesting their songs and I happen to love them. One thing I love about music is that the same song can mean so many different things to different people. We tend to hear things that trigger memories of our own lives and bring all sorts of emotions up. So many songs have so many verses that just stir something in me, especially with the struggles of this journey.

There is one part of a song that hits close to home when I feel like a failure... that I'm not living up to what other people think I should be doing. "And I'm sick of all my judges, so scared of what they'll find..." No one is perfect. I think we are all scared of the skeletons in our closets... the things that we don't want anyone to know about... the things that we struggle with in our daily lives. We all have short comings and we aren't here to judge anyone. I still need to learn this. I think at times I'm learning it the hard way. I just hope in time I can be okay with myself. To let go of things I can't control and give up on trying to be perfect for the people that have no authority to judge me.

Most people that know me know that I struggle with a mental illness and with that comes the sick and twisted thoughts of suicide. One thing I wish people could understand is that we DON'T like to feel this way. We don't say we feel this way to get attention. It is a horrible thing to truly feel like a failure and be so miserable with life, lost, alone and sad that sometimes you really feel that death is the best option. It's such a consuming thought at times when emotions are raging and it feels like you can't physically deal with things anymore. I've felt as though every episode I can get through is a battle that is won. And spiritually speaking I feel that I am up against the devil every day. "I saw the devil wrapping up his hands, he's getting ready for the showdown..." He wants us to be miserable like him and I think that having a mental illness allows him easier access into our minds and helps to distort our thoughts about ourselves and about the reality of life. I can relate to Cinderella in this song... "Now Cinderella don't you go to sleep, it's such a bitter form of refuge. Why don't you know the kingdom's under siege and everybody needs you..." I can see 'sleep' meaning two things for me personally. Sleep as in sleeping excessively as those who suffer from depression often do. It is the only time we can get away from life, from our thoughts and emotions. It is a refuge... a safe place. I can also see 'sleep' as meaning death. Dealing with suicidal thoughts and thinking of 'going to sleep' as a way to shelter myself from the pain of dealing with the emotions and reality of the difficult things in life. The kingdom is under siege... my household and family is under fire from Satan and my family needs me. My kids still need me. My husband still needs me. I don't know... it gets me through my difficult times. It helps me to truly see that I need to keep 'fighting' the devil and his crafty ways. I need to 'endure to the end'. This song makes me cry every time and I think I know what it is truly about which makes me cry as well. Ah... life is hard for so many people... "If you can hold on...
If you can hold on... hold on........................."

"God gives us hope but we still fear what we don't know." This makes me think of Oliver dealing with what he has to think about on a daily basis. He knows what is going on. He knows he's dying and he has hope that he will live again, but he's still scared. I'm still scared of the unknown.

Anyways... there are so many other songs of theirs that stir something in me... these are just a few that I've been listening to a lot.

I'm so grateful for music.

Breakdown city limits... ramblings of life.

2012-01-22T00:51:00.000-08:00

Well... life is hard. Period. Oliver's health continues to decline. I've been feeling like I'm on the edge of a nervous breakdown. I feel as if I just can't deal with everything that is happening in my life. My mind races with so many emotions that I'm seemingly fine one minute and wanting to pull a 'Thelma and Louise' and drive off a cliff the next. I however wouldn't be flying over the edge in a sweet convertible with a crazy friend... it would just be myself in a light blue minivan. And... there really aren't any cliffs to speak of around here. All kidding aside, I feel calm enough now to joke about things, but really there are times that I just feel like I can't handle all that this life is throwing at us. Most people who know me know that I deal with things with humor most of the time. I think if I didn't I would be bawling every second of every day.

I'm so tired of being angry. I'm tired of feeling lost, alone, confused, exhausted. This has been such a trying time in life. I really hope this eventually has a happy ending. I don't want to be bitter. I don't want to live life jealous of the families whose children have survived their cancer. I want to be happy for them. Happy that their scans say "NED" (No Evidence of Disease). I'm jealous... I want Ollie's scans to show that the tumor has disappeared... that the cancer is gone. I don't want to be planning a freaking funeral for my 10 year old. I don't want to see his lifeless body laying in a child sized coffin. I don't want that picture imprinted in my memory. I don't want to walk into my living room and remember that 'he died here'. It's not fair. It's NOT fair. I don't want to hear, "He's in a better place." I don't want to hear "It's all part of the plan." I'm sick of hearing that. I'm sick of hearing what I 'should' do and how I 'should' feel. I'm sick of feeling like a failure because I have no control over my life. I have no control over what is happening to Oliver. I'm angry.

What is the right decision? We've chosen to have in home Hospice care and have him pass away here, but I don't know if I can handle being reminded that he died in a certain spot in our home, but I know that he is more comfortable here so I want to do what he wants to do. Obviously if there comes a time when he has to be in the hospital, we'd go there, but I just go back and forth with our decision. There is also the hospice house or the hospital, but we also have three other children. I just don't know what to do.

What is the right decision on funeral plans? I don't even want to have a funeral. I hate funerals. I know sometimes they are called a 'celebration of life', but I don't think I'd feel like celebrating anything. We are debating whether or not to have a private funeral just for family and close friends, but then... the people pleaser in me risks pissing off massive amounts of people. Oh well. I need to get over it. As a good friend said the other day... no matter what you do... you can't please everyone... someone is always mad about something. So true... in our own little world... someone is always mad that I gave them the wrong color sippy cup or made the wrong thing for dinner. UGH... life is hard.

Everyone has their opinion and sometimes... I just don't want to hear people's opinion. Maybe that's why I've been more of a hermit the last two years. I'm just sick of the advice people give without me asking for it. I'm sick of all the 'well you should...' and 'I know exactly how you feel...' stories. I know I 'should' have a thicker skin, but it's hard for me to let things just slide off my back. It's so much easier said than done.

Ed is sleeping on the love seat and Oliver is actually sleeping in his hospital bed with his oxygen on. Usually Oliver is on the love seat and Ed is either on the couch or in the hospital bed. Oliver wants Ed to sleep in the living room with him and be around at all times. I can no longer lift Oliver up to help him use the restroom so Ed is here all of the time now. He's almost used up all of his vacation for the year and will be starting his Family Medical Leave soon. Ahhhh... no paychecks for us... fantastic. Yeah... so financially speaking... we are pretty much at a loss. I just don't know what to do. Cash out our 401 k... I think that is the only way we can live for the next few months. Everything medical is out of pocket now for several thousands of dollars and we have to come up with the thousand dollar monthly premiums. Awesome. Then... to top it all off, Ed tells me that you can only have FMLA for like 3 months... so if Oliver miraculously hangs on until May or June, he may be out of a job. I hope they wouldn't do that to him, but they could if he's missed a lot of work. So... mentally, physically, spiritually, financially... I'm spent. It's not like we live in a nice house that we could downsize... we live in 'a bad part of town' and our house payment is less than what we would pay in rent right now for a rental house or apartment that would house us all. I'm just at a loss. Where do we go from here??? I now see why people drink themselves into oblivion. I just want to be numb. I know that it doesn't help the problem in the long run... but man... it would be nice not to be in so much pain and worry all the time. I'm just at a loss.

It's been hard because Ed and I never have time to spend alone because Ollie always wants us near. It would be nice to get to spend some time with Ed and we NEED to get together and discuss funeral plans. I hate talking about things like that in front of Oliver. We need to do it sooner rather than later, but there is always someone around in need of one thing or another. It feels like we've been living in a haze for the last two years. Nothing is ever planned out in stone because we never know what tomorrow brings... how Ollie will be feeling. We just fly by the seat of our pants all the time. I'm so tired of living in a fog, but who knows if life will ever be how it was before. I'm sure it won't be... I can already feel the change. I'm always feeling sick to my stomach just wondering what is around the next corner. No matter how hard I dig my nails in... the inevitable will happen. Life continues to go on.

I started going to a class at church that will hopefully be able to help me deal with certain things. I didn't feel so alone in struggling with certain things in life. I need to learn to give myself a break... to not be so hard on myself... to keep trying... to hold on. I need to be okay with feeling the feelings that I have. I'm angry... okay... it's okay to not like what is happening in life. Hopefully this class will help sort out some things and uncloud things for me. I need all the help I can get.

The 'What ifs"...

2012-01-16T13:52:00.000-08:00

So, what has been on my mind lately???

OLIVER...

Opening wounds in his groin area.
Always on oxygen. When his cheeks are really red that means that he's having trouble so we need to get him on oxygen.
I can't lift him anymore because of my own back problems.
Can't walk without assistance anymore, but tries to because he wants to be as independent as he can be. We are just worried about when he tries and then falls because he's just too weak.
His skin is so stretched out and thin in places because of the steroids that he's on. I'm scared that more areas will rip open and I've heard that it takes a while to heal.
He cries out of the blue and asks about death and heaven. This is a daily occurrence now. I know he's scared of being separated from us and scared of the unknown. He doesn't want to be alone and he doesn't want us, me in particular to be sad. We've been reading him lots of books about death and heaven and hope that it helps to calm him and reassure him. It's been rough because at times, even I don't know what I believe anymore.
He chokes on more and more things, which worries me.
The big question now is when to stop the steroid. Steroid side effects VS. Benefits of steroids. I just don't know how much it's helping. It could be helping him in his ability to still eat, speak, move, walk, not have headaches, etc. On the other hand, the steroids cause massive weight gain in such a short time that the areas of the skin can't handle it and stretch marks can split wide open. It also makes them more irritable and angry with other people. It really is an evil drug. I just don't know what to do. I know we'll talk with Ollie about it since we are always up front and honest with him about everything. We'll see.

FUNERAL ARRANGEMENTS
Who wants to even begin to think about this at any age, much less for a child that hasn't even begun to really live their life yet. It isn't right. It makes me sick just thinking about having to find a funeral home and pick out a casket and burial plot. I don't even know what all goes into planning a funeral anyways. I'm completely clueless and numb at this point, but I know we need to get things planned before Ollie passes because then I will be COMPLETELY useless and wrought with too many emotions to do anything. I really wish I could be at peace and find some shred of strength. I just want to scream. I want to plan some special things for it, but don't know what yet. I'll have to think about it like I'm planning a party. A celebration for Oliver I guess. I don't know... *sigh*

IN HOME CARE VS. Hospice House or inpatient Hospital care
Right now we have nurses coming into our home once a week to check Ollie's vitals. I'm not a nurse, but there are some things that I know to possibly expect to see in Oliver when the time draws near. Thank goodness for the DIPG Yahoo support group where I can ask questions and get real answers from other parents who have been through similar things... been through a similar hell at times. I just want his needs and wants met. For him to be comfortable and pain free in the end. I just don't know how much more I can take, seeing him failing so much... just deteriorating daily. It makes me sick.

Post Christmas Gingerbread Houses and other January Randoms

2012-01-13T21:01:00.000-08:00

January 2012

First of all, I would like to say THANK YOU to the family that donated their table and chairs to us. We've never had a new table or chairs. Our first table was given to us by a church friend and we bought some slightly mismatched and scratched chairs for it at a going out of business sale. Throughout our nearly 12 years of marriage we've had to say goodbye to several of our chairs. Many slow motion falls have happened throughout the years resulting an a pile of wooden rubble beneath our not so skinny behinds. So for a family of six, down to three chairs, we've been using upside down laundry baskets and Oliver's shower chair for our family dinners and the like. A wonderful stranger heard of our need and gladly gave us her table and six chairs. Bringing to mind a line from the movie Robots 'See a need... Fill a need'. I'm in love with the table already because it has a leaf in it and is so much bigger than our other one. We do so much at our kitchen table that I am thrilled to have gotten it. It will be in good hands... well... crafty hands. It will be well used. :O) So... here are some pictures of us actually making Gingerbread Houses... er... Graham cracker... er... candy houses! I don't have the patience or time to make my own gingerbread so graham crackers it is! ENJOY!!!

GINGERBREAD HOUSES
We invited Ed's brother, Danny and his wife, Jamie over with their little ones.

I dyed the 'glue' pink this year. Eden getting ready to add some goodies!

Oliver putting his house together with dad.

Someone sent Oliver this awesome Cubs shirt with his name on the back!

Laughing at his house. Not sure if he liked it or not. I'm sure Ed was probably making fun of his own building skills.

Daddy helping Finny with our house.

"Yes, Finn... please wipe that frosting right on your jammies... go ahead."

Mine and Finny's finished house. I think he's saying "CHEESE!"

Eden would do a nice smiling pic for me so here she is in all her geeked out glory!

Carson, age 2, Jamie, Phineas, age 2

Kaylee and Daddy's house looks like it was condemned... hence the boo hoo look on Danny's face!

Darling pic of my nephew, Carson, who is 3 months older than my Phineas.

Ed showing us all the sweet houses. And no... we do NOT eat the candy off the houses.

JANUARY RANDOMS
The boys all fell asleep together on Ollie's bed in the living room. I love how Jaren's hand is ALWAYS in his pants...

Oliver sitting at the table drawing in a Harry Potter sketchpad I got him for Christmas.

Playing with play dough. Making pizzas.

A nice balloon bouquet someone sent Oliver.

Finn trying to do some pull ups with Daddy.

"Show me your muscles, Finny!!!"

Brotherly love...

Going for a walk with the boys on a beautiful, sunny January day where there is no snow on the ground or in the skies. Craziness.

This is what a glasses thief looks like. I LOVE his face in this picture!

Thursday, January 5th

Tonight Oliver ate dinner and then complained of some stomach pain. He went to the restroom and had a bowel movement, but we didn't know if it was impacted bowels, kidney stones or his appendix or what it was. We called Hospice, but I just wanted to get him to the ER immediately because you could tell that he was experiencing a lot of pain and the children's dose of Tylenol wasn't doing much to help. So Ed and I drove him to the ER where we waited in the waiting room at least 15 to 20 minutes watching him writhe and groan in pain. We held his hands, held a wet towel on his head and sang him some songs to try and help him get through the pain until they could get him in a room and see him. We got him into a room and they did blood work and vitals and such and then he had a CT scan to check for what was possibly causing his pain. After a bit, his pain went away with no meds and the doctor came in later and said that he's full of crap. They said it was impacted bowels, gave us a laxative drink to get into him and told us to take cover because it can go through ya fast! Anyways... I'll leave the nasty stuff out... he feels much better now. I can't hardly stand watching him in pain. When I was singing to him I couldn't hardly get through some of the words without choking up. I'm going to need a lot more strength to be able to deal with all the things that are lying ahead.

PLEASE KEEP PRAYING FOR NO PAIN FOR OLIVER, FOR HIM TO BE AT PEACE WITH THE REALIZATION THAT HE WILL MOST LIKELY BE DYING SOON. PLEASE PRAY FOR OUR FAMILY TO BE ABLE TO HANDLE WHAT COMES, EMOTIONALLY, PHYSICALLY, FINANCIALLY. THIS HAS BEEN EXHAUSTING IN SO MANY DIFFERENT WAYS. THANK YOU FOR CONTINUING TO THINK OF US ALL IN YOUR PRAYERS.

Happy New Year from HOGWARTS!

2012-01-01T12:36:00.000-08:00

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!

December 28 - Quick Update

2011-12-27T22:29:00.008-08:00

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

2011-12-19T02:55:00.000-08:00

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

2011-12-15T03:12:00.000-08:00

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?"

2011-12-10T23:08:00.001-08:00

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 2011. 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

2011-12-02T03:10:00.001-08:00

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

2011-11-03T19:22:00.000-07:00

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

2011-11-02T22:24:00.000-07:00

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"

2011-10-14T01:41:00.003-07:00

"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

2011-10-14T01:40:00.006-07:00

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!

Day 5 Florida - UNIVERSAL STUDIOS

2011-10-14T01:40:00.005-07:00

September 9, 2011

I snapped a few photos of the resort before we left. It was a wonderful resort and we are so grateful for the wonderful people that donated a few days for our family to stay here. It was nice not to have to deal with parking for so many days. Thank you to the Spoull family from Winthrop that saw Oliver's story on the news and decided to get in touch with us. There are many things I've learned throughout this journey. One that stands out to me is that there are people that choose to act on a feeling they feel and those that choose not to act. I want to be a person that is moved to action so I can be an instrument in bettering someone's day. We'd love to meet up with you guys again soon! Thank you again!

After we got our rental car, we packed up and headed to a Brazilian Steakhouse for lunch. My brother, Bryan, had looked it up and wanted Ollie to be able to experience it before we left Florida! Although it was a bit pricey, it was worth every penny. Sometimes you have to do something other than McDonalds or Wendys! Life is worth living so do things you wouldn't normally do every once in a while! Spend a little more on a meal enjoying your family's company and making memories. I'm really glad we went.

They had a buffet with some wonderful breads, veggies, salads and cheeses.

I LOVED the decor inside the restaurant!

Oliver

BACON!!!

These guys would circle around the tables with these long saber-like skewers of different types of meat. Man... Ollie was in heaven!!! His whole plate was piled high with JUST the meat!

Each place setting had a special set of small tongs to use when they slice off a piece of the meat. You can see Oliver knew how to use it to grab the slice and take it to his plate.... then...

...to his mouth.

We had to bring a box of crackers since there was nothing there that Jaren would eat because of his auto immune disease (Eosinophilic Esophagitus). He's having fun playing with the tongs. Later we saw him trying to clean his fingernails with them!

We each got a paper chip, with one side being red and the other side being green, which told the waiters with the skewers either to stop at our table because we wanted that particular type of meat (red) or to bypass our table (green). You can see Oliver has been loving this meal!!!

Eden enjoying her lunch. She loves salads!

Brazilian soda. Not a fan.

Plantains

Eden and Ed

Mom and Bry waiting in the lounge area in front.

I loved all of the colors, the wrought iron, and the stone slat wall behind the front desk.

After lunch we headed over to Universal Studios for the rest of the day.

Making a wish in the fountain, where all the coins are donated to Give Kids the World, a resort for Make*A*Wish kids and their families.

Marilyn Monroe and Eden

Oliver and Marilyn Monroe

"I Love Lucy"

We even got to meet Homer and Bart!

Jaren loved meeting all of these characters!

Doc Brown from 'Back to the Future'

Betty Boop

Webslingin' time!

Ollie

Eden

Shaggy, Jaren and Scooby-doo

Shaggy, Ollie and Scooby-doo

Jaren

Me and Eden

This is the 'Marley' from the movie 'Marley & Me'!

This is 'Babe' from the movie 'Babe'! She's gotten a lot bigger since filming! ;o)

Crazy storm rolling in! We went to the Shrek 4-D attraction during the storm and then waited in there a while until the lightning stopped and the rain let up. It was kind of scary!

Ollie likes listening to Bob Marley and so we planned to eat here at Universal City Walk while we were down here. They played a lot of Oliver's favorites while we were there including
'Three Little Birds'!

Eden, Ollie and Uncle Bryan

Jaren had to get his fries from Burger King. He didn't like the Yucca fries! I wasn't much of a fan either.

Hey, Mon!!!

Oliver and Ed

Jamaican Cream Soda

I didn't know Bob Marley passed away from Brain Cancer...

PEACE
"Don't gain the world and lose your soul,
'cus wisdom is better than silver and gold"
-Bob Marley-

Had to get some Jamaican inspired jewelry for Ollie and Eden!

The fountain at Universal City Walk

Ollie loves churros. Had to get one before we headed back to the hotel.

Good nights sleep after a long fun day!

Day 4 Florida - MAGIC KINGDOM

2011-10-14T01:40:00.003-07:00

September 8, 2011

Jaren talking to Phineas on the phone before we headed out for the day. I think it was the longest Finny talked on the phone, I think he talked with all of us. Sweet little man.

Can't get enough of the palm trees.

Everything was decorated for Halloween already!

Jaren and Eden

Pinocchio

Grandma with the kids.

This photographer stopped us because he saw my Iowa Hawkeyes shirt and said he was from Iowa, too. Come to find out... he's from my mom's hometown of Clinton, right on the Mississippi river. It really IS a small world after all! ;o)

Cinderella's Castle

One of my favorite places in the park!

It's Cap'n Jack Sparrow!!!

Eden loving her Hello Kitty nails! My cute girly girl! :O)

Nachos? Yes, please...

Sassy Pirate Princess

A duel??? This happened many times throughout the park that day!

Love Jack Skellington!

Captain Ollie Sparrow

Jaren about to gut Uncle Chad!

Pirate Goofy

Prince Eric & Ariel (The Little Mermaid)

Prince Ali & Jasmine (Aladdin)

Ed, Bear, Oliver and Eden

Mom and Ollie trying to cool off.

Jesse and Woody from Toy Story

Jaren was sword fighting with her!!!

Eating some churros.

The Haunted Mansion

So beautiful!

Oliver actually took this picture of us!

I've ALWAYS wanted to do Silhouettes of my children. I'll still need to get one done for Phineas.

Oliver helping hold Jaren's head still for the artist!

Me and Ollie

I don't think I should have let him drive!! I was shaking all over the race track in that thing with Jaren at the wheel!!

Jaren and me

Jaren and Grandma

Ollie and Chad

Day 3 Florida - ANIMAL KINGDOM & HOLLYWOOD STUDIOS

2011-10-14T01:40:00.001-07:00

September 7, 2011 - ANIMAL KINGDOM & HOLLYWOOD STUDIOS

ANIMAL KINGDOM

Today we went to Animal Kingdom until it closed at 5 pm, then took a bus over to Hollywood Studios until they closed the park at 9 pm. None of us had ever been to Animal Kingdom before so that was fun to see for the first time. I wish we had more time to explore the park, we didn't get there until around lunch time.

Kilimanjaro Safari

I loved seeing all of the different trees they had there.

Naked mole rats... need I say more?

Dung beetles... yuck. I remember learning about these in middle school.

Ollie loves all the birds.

Eden and Ed

A meerkat, maybe Timon, on the lookout.

Sadly, this may be Pumba. "When I was a young warthog........"

We must have spent a good half hour watching these gorillas. This baby was so cute! I could seriously watch them all day long!

I loved the nests hanging below the branches.

Woman from the woods. She was hanging out in the trees on stilts.

Dinoland, USA

So glad we didn't take Jaren on this one!

Jaren, Eden, Ollie and Ed

Oliver and Eden

Ollie enjoying some ice cream. I love his smirk.

HOLLYWOOD STUDIOS

Right when we were leaving the Animal Kingdom, it started to rain and I mean... it was coming down in sheets! We were standing at the bus stop and decided to go to Hollywood Studios for a couple of hours anyways. We were there in Florida and hey, a little rain never hurt anyone... :O)

Oliver and the Sorcerer's hat

This was the COOLEST restaurant. Although we didn't make advanced reservations we still had a good time sitting at the 'UFO' table! Most of the tables were cars lined up like they would be at a drive-in movie. While eating you watched clips of goofy horror and sci-fi movies. The food was good and our waiter was really nice, too.

Ed, Oliver and Jaren

Eden, me, Ed, Ollie and Jaren

Ollie, Eden and Ed went on Star Tours while Jaren and I sat waiting to see the Star Wars show, Jedi Training. Due to it misting, they cancelled it. ARGH. Jaren was dancing to the movie music while we were waiting so that was pretty entertaining.

We didn't get there in time for the Indiana Jones stunt show, but at least we saw it last year on Ollie's MAW trip. He's really been into Indiana Jones lately and we've watched all the movies recently. That kid is pretty good with a bull whip. This is him near the Indiana Jones jeep looking a bit like James Bond with his gun fingers... ;o)

Toy Story

This was our favorite ride there! We went on it twice!

I loved all of the artwork inside.

Ollie

Jaren and Eden

"Nosey, Nosey"

Jaren, Eden and Ollie

Second time around. Oliver and Jaren in action! Couldn't help but think of little Rex Stuart while we were there and especially when I saw this picture.

Waiting to meet Woody and Buzz

I love this picture!

All lit up at night.

Ollie took this picture!

Day 2 Florida - EPCOT

2011-10-09T23:22:00.001-07:00

September 6, 2011 - EPCOT

It was starting to rain, but we wanted a family picture by the giant ball anyways!

CHARACTER MEET & GREETS

Mickey Mouse

Pluto

Minnie Mouse

Donald Duck

Goofy

Goofy with Grandma

Chip and Dale

Snow White telling Jaren the Dwarves were looking for their jewels!

Group Picture
Stacy, Ed, Chad, Mom, Bryan
Oliver, Eden, Jaren

Our Family sans Phineas...

*AMERICA*

*GERMANY*

The boys... Ed, Ollie and Jaren

*CHINA*

*ENGLAND*
This is a DREAM destination of mine!

Eden making some calls!

Eden and I sitting in Mary Poppin's chair I daresay.

The Beatles

Hello, young chap!

*FRANCE*

Belle with Jaren and Eden

Princess Aurora with Jaren and Eden

Princess Aurora and Ollie

Oliver and the 'Spitting Gargoyle'.

Eden rockin' some sweet beret.

We sampled a few things from France and WOW... YUM!

*MOROCCO*

Bry and Chad

Eden with a fez by the camel.

She really wanted some sparkly jingly costumes, but not in our price range!

Beautiful jewels!

*JAPAN*

My friend told me to do the pearl thing in Japan so I looked and found this. You choose a clam and they do a little show to open it up. They measure it and clean it and do a little drum song and dance and then you decide what you'd like to place it in.

I chose one clam and got TWO pearls inside so I got a necklace and we surprised Eden with a matching necklace of her own!

The kids had fun finding tiny lizards!

Ollie

*NORWAY*
This is another one of my DREAM destinations as I am one quarter Norwegian and would love to see family there and see where they lived.

Jaren proud to show his Norwegian Heritage.

We went on the Maelstrom which was a boat ride similar to Pirates of the Caribbean. Jaren did NOT like it at all.

"Kringla" had the BEST baked goods! We got some Lefsa and some other delicious treats to share! One was a roll filled with a pudding inside topped with almonds and coconut. YUM!!

I liked the grass on the roof! :O)

Jaren feeling the viking come from deep within!

TROLLS!!!

Me picking the troll bogies!

Uncle Chad, Oliver, Jaren and Eden (Brunhilda) getting their Viking on!

Now THIS troll reminds me of the troll figurines that my grandparents had at their house!!! I wanted to buy one, but didn't have that much to spend and honestly I didn't want it freaking the children out either!!!

Oliver standing in the doorway. I loved all the carved wood!

Jaren standing like a soldier.

*MEXICO*

Eden with her Papa

Ed and me

Jaren, Eden and Ed -- my hot tamale!

Ollie playing his new bongo drums while the mariachi band was playing!

I think the kids have the most fun watching the animals scurry around the park! Here is our new little friend we must have sat and watched for like half an hour!

Brothers

Ollie was channeling Snow White here I think. There was a bunny and a squirrel as well as a duck. This kid LOVES animals!

Ollie outside of TEST TRACK, which he said was his favorite ride!!!

Jaren... is... the coolest.

The Finding Nemo stuff was fun! 'Finding Nemo' was the very first movie we took Oliver to at the theater. He was around Finn's age (2ish) and was more interested in the lights lining the aisles than the actual movie!

Ewwww... eels...

It's NEMO!!

Turtle Talk with Crush. It's a screen where you interact with Crush, the turtle from the movie who is a complete surfer dude. He talked with a few kids and then asked Oliver a question. He then wants to ask Oliver's mom, me, a question and we are chatting for a bit. Very silly. He asked how many offspring I had... I said 4... he said he had like 67. :O) He then layed back on his shell and was floating and was like... "Ah.... Stac..." It was so funny!!!

Part of the fireworks show we saw as we were walking. I wish we'd have seen the whole thing.

I loved the colors at night!

We decided to wait by a fountain until most of the rush had left. Oliver was playing his bongo drums. Jaren must have had enough of the hot day and threw up by the fountain a bit. Poor kiddo. He was pretty warm so I figured it was just a long day out in the sun that did it.

Day 1 Florida - OLD KEY WEST Resort & DOWNTOWN DISNEY

2011-10-09T21:18:00.000-07:00

September 5, 2011

We drove down to Des Moines last night so we could leave early in the morning and catch our 6 am flight to Orlando! Thank you to EVERYONE that made this trip possible!

Jaren and Ollie goofing around in the back of the van.

A beautiful sunrise on the plane.

Jaren

Eden and Ollie

We stayed at Old Key West resort which was beautiful. This was behind the front desk. :O) Again... thank you to the Sproull's for allowing us to stay here free of charge. We can't wait for you to see all the fun we had! It was beautiful!

While we were checking in, they came in and announced that Oliver had just arrived, gave him balloons and each of the kids an autographed picture of Mickey, Minnie, Goofy, Donald and Pluto! What a sweet surprise!

Ollie was wearing his UNI shirt (University of Northern Iowa) the first day and a worker at the resort came up to Ollie and I and said, "UNI?!? Is that a University of Northern Iowa shirt?!" Turns out that he graduated from UNI in 2006 and was from Iowa. His name tag said "Cedar Falls, Iowa" on it -- my hometown. How crazy is that?!

Grandma and Jaren waiting outside of the General Store.

By the pool area.

Sweet Jaren. The workers there kept giving the kids Mickey Mouse stickers!

After we grabbed lunch and looked around the resort for a few hours we headed to Downtown Disney. We didn't have a chance to go there during Ollie's Make*A*Wish trip last year. It was WAY bigger than I thought it would be. There were lots of restaurants and shops lining each side of the lagoon. We got there by bus and went home via water taxi.

Oliver at Downtown Disney

I was in awe at all of the Lego creations!

Oliver chose to eat at T-Rex which was a dinosaur version of The Rainforest Cafe. Jaren was NOT happy about this choice. When we walked inside and he saw the huge dinosaur behind Ed moving he said, "Get me out of here!!!" I'm sure we won't win Parent of the Year because we stayed there and ate anyways. He most likely won't be a paleontologist because of this horrifying experience! ;o) I thought it was pretty awesome!

During the 'Meteor Shower' lights would go off and on and sounds of dinosaurs filled the restaurant. The ice cave would turn from blue to pink to orange and back again changing with crackling noises. It was awesome. I had hoped we would sit in the ice cave area.

Ollie

Mom and me
This huge octopus would move around every once in a while.

Ollie and Eden

In the Lego store next to Buzz Lightyear!

Eden picking Woody's nose!

The kids getting creative.

By the Harry Potter Lego kits.

This Mickey was made out of a ton of smaller Mickey statues!!

The kids designing their own Mickey's.

I had to get a picture of the Yoda one!!!

This statue guy was pretty cool. He was all bronzed out and looked at Jaren right before I snapped the picture!!!

It was fun hearing all the music and seeing all the lights and cool shops.

"Happy Birthday, Carson!"

2011-10-02T21:30:00.000-07:00

September 2011

Our nephew, Carson, celebrated his 2nd birthday and we went over to celebrate! Hope you had a great birthday, buddy! You have more cars and trucks than you know what to do with now!

Carson in Jaren's Iron Man mask.

Carson trying to open the gift while standing on it! Too funny!

Phineas is a tad big for the baby bouncy seat. He's taking a load off...

Super-Carson!

Finny itchin' to open some gifts! Carson is three months older than Finn.

So this is one of the weirdest stuffed animals I've ever seen. It sings and moves it's mouth when you press its belly... which creeps me out a bit.

Cute train cake that Jamie made for Carson.

Birthday Boy!!

Eden and Kaylee

Oliver's Journey

Rough Week

Tdoay, you were far away...

Oliver Update

"It's my blog, I can vent if I want to..."

Valentine's Day - "Let's SHARE THE LOVE"

No more traveling...

DIPG Kids - Sweet Valentina

DIPG Kids - ANGEL Ashlyn

Ashlyn Breanna Poole

Forever 217/31/90 - 1/23/12

Ollie Update - January

Music and Lyrics

Breakdown city limits... ramblings of life.

The 'What ifs"...

Post Christmas Gingerbread Houses and other January Randoms

Happy New Year from HOGWARTS!

December 28 - Quick Update

Ollie

Ollie

"Are we human or are we dancer?"

December 2011 - Update

Pancake Breakfast Fundraiser for Oliver

MRI -- November 2, 2011

"Blessings"

Day 6 Florida - ISLANDS OF ADVENTURE

Day 5 Florida - UNIVERSAL STUDIOS

Day 4 Florida - MAGIC KINGDOM

Day 3 Florida - ANIMAL KINGDOM & HOLLYWOOD STUDIOS

Day 2 Florida - EPCOT

Day 1 Florida - OLD KEY WEST Resort & DOWNTOWN DISNEY

"Happy Birthday, Carson!"

Forever 21
7/31/90 - 1/23/12