February -- Valentine's Day & Ollie's peaceful transition

FEBRUARY 2012

These two weeks have been the most trying days of my entire life. Two weeks ago I was in a place I never thought I'd be. Ollie had been struggling to speak and it was harder and harder to understand him. It was a difficult time for me as my medications were being changed and I was teetering on the edge of sanity I think because of it. It's been hard the last couple of months as it seems that everyone seems to just want Daddy. Due to my whacked out mental illness I, of course, took it personally and have been struggling with the fact that no one wants mom for anything. I know that Ed is the only one that could lift him and help in many more physical ways than I could. He'd gained so much weight, lost his the ability to move and I deal with back issues so of course he needs Ed. I had been struggling before, but when Oliver struggled to get out the words, "I love you, Dad" and then said nothing to me... I just lost it and went into a tailspin of sorts. I think only people who have been suicidal can't understand the feeling of pain and anguish that consumes your entire being. I sat and waited for him to say something to me... but nothing. And those were the last words I ever heard him speak. I was sad, I was angry. WHY??? Why does everyone want Dad? I just thought... 'fine... everyone can just have Dad' and thought 'screw it'. No one wants me here anyways so just screw it. And I snapped. I did what I never thought I could ever do. Never in my life did I ever think it would be possible for me to actually try and do it, but I did. I became 'that person'. Oh great... I'm now one of 'thooooooose people' whose lives are completely out of control and actually try to do themselves in. I will forever have that label attached to me. So many thoughts swirled through my head and I wanted to just run away so no one would find me and be able to stop me, but then I think sanity finally found its' way back into my brain and I was scared. I was scared that they wouldn't be able to save me because I took so many pills. I was scared that it would hurt to pump my stomach. I was scared to have to face my reality. I was scared, I was anguished, I was angry, I was mad at myself for being so weak, I was embarrassed at becoming what I was. I was consumed by grief. My son is dying. How am I going to live my life without him? How am I going to be able to go on every day without that smiling boy next to me, how will I eat everyday at the table with an empty seat across from me? (I understand that my kids and husband need me... believe me... I do, so please don't feel like you need to counsel me on that. I'm in a different place now.)

The more I thought about it, and I had lots of time to think for the following few days, the more I realized that, "My kids may act like they don't WANT me, but they NEED me." I really tried to delve down deep inside and get at why they just gravitate toward dad. Well... I'm the scary mom with the mental illness that is like Jekell and Hyde some days and daddy is the easy going one that lets everything just roll off of his back. AWESOME. I may have given him memories of parties and trips, but dad can give him his knowledge of the gospel and the plan of salvation. I can't. Again... AWESOME. Wow... completely feeling like a ball of crap right about now. I can give him fun and fluff, but Ed can give him what he truly needs. A situation like this really makes you take a hard look at yourself and life. I really need to do more than I have been doing to get my life back in some sort of order. I just feel so lost and out of control. So I was still in-patient at the hospital and Ed said Oliver wasn't doing well, so I talked with my doctor the next day and let me leave early because he was actually being transported to our local Hospice Home. I don't think I would have ever forgiven myself had he passed away when I was in the hospital myself although I know that is where I needed to be at the time. The next few days were difficult seeing him decline more and more each day. He hadn't eaten or spoken in several days and his breathing had been getting more and more labored.

FEBRUARY 14, 2012 - Our final Valentine's Dinner with everyone...

Eden and Ed

Oliver and his favorite -- Chocolate covered strawberries!

Sweet boy, asleep.

Thank you to all my friends that helped with the Valentine's decorations and food. We couldn't have done it without your help!

Someone else that was visiting the Hospice House put this inside the door, as we were all sleeping at the time. Very sweet of her.

Sweet boy. Oh... my heart. He loved Dance Marathon that's for sure.

Ed giving Ollie some sparkling cider from dinner since he hadn't eaten food for several days.

Trying to keep him as comfortable as we could.

Aubrey getting more cider.

Finny just blends right in with the red balloons!

Mmmmm... dessert!

Grandma (my mom) -- the Valentine Bandit.

My brother, Chad and my niece, Addison.

Aunt Emily, Ollie, Grandma, Brother Finny

Eden and cousins Natalie and Aubrey

My sweets...

We still celebrated Valentine's day with our traditional family Valentine's dinner. It was hard eating in front of him. I did give him some sparkling cider through a straw though. Each day, he lost something else. He couldn't sip through a straw anymore and so he choked if he got too much in when I actually put it into his mouth. His breathing sounded so crackly and raspy. It sounded like someone was in an old rocking chair rocking back and forth very quickly. Tensions were high and I will spare details of many of my frustrations at the situation I had currently found myself in. I needed to have alone time with him and Ed and there were just so many people in the room at the same time and I felt so frustrated. We finally got that time to ourselves. I read to him, we sang to him (Nearer My God to Thee, A Poor Wayfaring Man of Grief, Be Still My Soul, Come Come Ye Saints, etc.), I did a Mary Kay 'Satin Hands' treatment on his hands and massaged his legs and feet. I laid on the bed next to him and just ran my fingers through his hair and kissed his cheeks as much as I could.

Then I was in so much pain I was on the floor like that. My mom took me to the ER and they found that I had three kidney stones. This ended up hurting until about an hour before Oliver passed away a day and a half later. Plus, the day we got to the hospice house, I had the stomach flu and was laying on the cold bathroom floor there until I got up enough strength to go home, take some NyQuil and sleep for several hours. Aunt Flo paid a visit, I was having headaches from medication changes and then a horrible cold that I still have a week later. All this is going on with my own physical body and I'm like... "WHY NOW?!" I can't miss any more time with him. I can't sleep right now... I have to be well for Oliver. I was just floored as to all the pain I was in, but then I tried to think of Oliver and how he never complains... so I just had to suck it up. Oh well... do what you have to do.

FEBRUARY 15, 2012 - So many friends were in and out visiting the last few days. Amy, Meghan, Andrea, Mrs. Klein (Oliver's Kindergarten teacher), Woody, Katelyn, Bishop and Susie, and so many family members and other friends of ours and my mom's came. Lindsay and Krista and their kids came in with lots of balloons and valentines from all the kids in Primary at church. It was hard to see Sydney and Haylie crying as they saw Ollie. We've known them for so long and Ollie said that Sydney was one of 'his best girls'. They talked to him, although he couldn't speak, he gave a half smile and they both gave him a kiss on the cheek. Two of Oliver's best friends visited him on the night before he passed away. Nick came to read him some of the Valentine's that his class at school had sent and would get choked up reading some of them. What a sweet kid. I just love his whole family. Eden is best friends with his younger sister, McKenzie, who I used to babysit when her and Eden were in Preschool together. Then his good friend Takoda came with his Uncle Devon, who is actually their age, and his mom and dad. They are some good people, too. Such sweet, sweet people we have been blessed to meet because of our children. Takoda read 'Charlie's Superhero Underpants' and then talked to him and sat while Oliver laid next to him. He did manage to crack a few small half smiles there at the end. He'd been throwing up several times as well and so things were just getting harder and harder for him to do. They stayed for a long time and we had a great time talking with them. Takoda had given him a hug and kissed him on the cheek. Seriously... a sweet and compassionate young man.

Devon, Takoda and Ollie

Cassie (Takoda's mom), Takoda and Ollie. This is the last photo of Ollie that I have. Sweet, sweet boy.

Later, Katelyn, our University of Iowa Dance Marathon family representative, who met Oliver last year and just adores him stopped by at like 11 pm or so and chatted for a bit and then headed home. I was grateful that she had stopped by tonight because she had been planning on stopping by on Thursday night. After most people had left, my brother, Chad, Ed's brother, Randy, Ed and I and Oliver were the last ones that remained in the room. I kept having a song by the Dixie Chicks in my head called "Godspeed". "Godspeed, little man... sweet dreams, little man. Oh my love will fly to you each night on angel's wings. Godspeed. Sweet dreams."

FEBRUARY 16, 2012 - He was only there for four days. We did a lot of swabbing the saliva out of his mouth and a morphine drip for any pain he may have had. It was easier to manage before the pain started. He never complained, ever. Unreal. His breathing got worse and worse and Ed used the suctioning machine and got out a lot of foamy white stuff and there was some blood in the tube. I knew it wouldn't be much longer. I didn't think he would make it through the day and I was right. Everyone else was sleeping, but I stayed up with Oliver as he slept, his breathing still really crackly and loud. I sat next to him in a chair and suddenly realized that I could only hear the whirring of the fan and the droning of the oxygen tank and not his breathing. Before I looked up at his face... I just knew. I knew he was gone. I looked up and instantly knew and I looked at the clock... it was 4:15 am. I woke up Ed and said, "I think he's gone." The nurses came in and he let out a breath, but we knew he was already gone. It looked like he was sleeping. I KNOW that he left the way he wanted to because it was like he quietly 'snuck out the back door', just like Ed said. He wouldn't have wanted us to be crying or worried, so he peacefully left while we were all unaware. What a sweet, sweet boy. Always caring for everyone else.

Randy went to pick up Eden and I think Ed's dad brought Finny and Jaren... unless Jaren stayed with us that night... I can't even remember. Eden was scared to come into the room because she didn't want to see him laying there, but I said he just looked like he was sleeping and he was at peace. I was shocked because after she came in she kept touching him and kissing him and touching his hair. The boys didn't really understand it, of course, but I wanted them there anyways. We stayed in there with him for about an hour and a half later and then called the funeral home to come and pick him up. I kissed him and ran my finger along the curve of his nose. I couldn't believe the day had finally come to say goodbye to him. We followed him outside on the gurney and went to our car, I couldn't bear to see his face covered up in a body bag. We drove home and started the funeral planning. I still hadn't really cried much, later realizing that it is because of the SHOCK stage of grief. A numbness had overcome me, a small gift from God, to be able to function while planning the funeral and signing papers and all the stuff that comes after a death. We went to the funeral home and got things squared away and then to the cemetery to pick out a plot. Lot #33... ironically the age of Ed and I at Ollie's passing. We have plots next to him as well. So much of the next few days are a blur...

"Oliver Palmer passes away" - KWWL News

"A community pays tribute to 10-year-old Oliver Palmer" - KWWL News

"Waterloo boy, Oliver Palmer, loses battle with cancer" - Waterloo Cedar Falls Courier (newspaper)

DIPG Kids - ANGEL Ashlyn

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

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.

Update on Ollie

This past 19 months has been such a roller coaster of emotions. So many times Oliver will go through periods of time where Ed and I think that his tumor is growing because of the symptoms he'll start having. He'll start choking more, stumbling more, etc. After a bit of time, the symptoms will subside and we are left wondering what is going on. We were so sure that his tumor had been growing, but were gladly shocked and surprised to find out that his MRI in June was still stable. He has his MRI's every 3 months to check on the tumor and see if it remains stable or has grown.

In the months that we wait for an MRI to ease our fears, it seems that I freak out about symptoms reappearing and wondering if his tumor is progressing. It's a horrible state to be in... always nervous for what the next day will bring.

As far as his symptoms go this is where he is currently:

Double Vision - He still has double vision and so he wears his eye patch most of the day. If he doesn't wear it, he gets a headache and nausea. A few weeks ago, he'd taken his eye patch off and it looked like his eye was straightening out! I couldn't believe it! So, he's been having periods throughout the day that he doesn't wear his patch, which is great!
Balance / Gait - Oliver still walks differently than he used to. He trips and falls down every once in a while here at home and when we are out and about. His legs just aren't as strong as they used to be and his body isn't doing what it should. I joke with him that he walks like a drunken sailor. We try to joke around about things to make it easier to deal with at times.
Strength / Endurance - Oliver can still walk, but we just got him a new wheelchair fitted for him last week. Whenever we go to the store, I try to get him to walk as much as he can so he can get the exercise in, however he tires easily so he's usually in the wheelchair. He just can't walk long distances anymore.
Speech - His speech has gotten worse over the last several weeks. A few weeks ago he was at my mom's house and I was talking to him on the phone and I seriously could hardly understand a word he said. When I'm with him face to face it's easier to understand him, but we have to ask him to repeat himself several times. I've also noticed that the longer he speaks, the quieter he becomes. When he's finishing a sentence it trails off like he's having a hard time catching his breath. When he's getting upset and tearing up or when he's whining about something, it's almost impossible to understand him. I find myself straining to make sense of what he's saying.
Emotions - I don't know if it's because he's getting older... if it's because he has a younger sister that is close in age... sibling rivalry... or what... but the anger and the eye rolling has been difficult for me to deal with. He has times where he just is as sweet as can be and laughing and joking around and then there are times when he's bugging the crap out of his siblings and gets angry and more aggressive when someone ticks him off. I know anger is an issue when a child is on steroids, however he hasn't been on them for over a year now. He's also been more emotional and cries and gets upset more easily. I do know that brain tumors can affect emotions based on where the tumor is pressing in the brain. The anger and pouting has been so hard for me to deal with because it's just not the same Ollie which makes me so sad to see and it just grates on my nerves to be harping on him all day long.


It's hard to see how much he has changed both physically and emotionally / mentally. I see so many photos of kids with DIPG and I'm struck by how much they look alike. The way their legs look is the same... the loss of muscle tone, the droopy eyes, the sagging smile at times, the way they speak. It just makes me sick.

Two more little boys passed in the last few weeks... Ty'Yonne and Kendall. Please keep their families in your prayers.

Ollie's next MRI is September 14th and we are praying that the tumor remains stable or a miracle occurs and it shrinks! We always have to hang on to that shred of hope... even if it's just a shred.

To Heaven and Back...

I picked up a few books at the store about real life accounts of heaven. I don't know if it's in an effort to ease my worried mind about what lies ahead or not... most likely.

"Heaven is for Real" - a little boy's appendix ruptured.

"90 Minutes in Heaven: A True Story of Death and Life" - a pastor was in a car accident. I've gotten half way through this book and it vanished on me. ARGH... I'll have to look under the couch. It couldn't have gotten far.

They are good reads if you get a chance.