Thursday, February 9, 2012

Oliver Update

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

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

Sweet boy

Papa's kisses are the BEST!

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

Finny sneaking in a hug.

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

Hugs and loves from Finny boy

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

Addison and Jaren

Jaren giving some crazy loves, Oliver and Uncle Chad

Natalie picking Uncle Ed's boogeys.

He's learning how to use the potty!

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

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

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

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

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

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

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

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

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


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

"GRYFFINDOR!"

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



Giving Ollie his valentine.

Jaren modeling his sweet new hat Katelyn brought him.

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


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

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


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

23 comments:

Hannah Ahrenholz said...

Stacy,I can't imagine how hard this is. Oliver is in my thoughts and prayers always. I check on the blog everyday and while I don't always comment just know that I truly admire you. Hugs and love to you and yours. Hannah

Janene Wawro said...

I'm SO sorry that he's just so miserable. It honestly just bites. I love that you are always open and honest with your feelings. You have much to deal with and you are doing a better job than you give yourself credit for. You amaze me constantly. I love you, sis!!
p.s. That cake was seriously amazing!!

Amy said...

What an amazing son you have. And what an amazing family you are. My girls talk about Oliver quite a bit. Although they've never met him, they know his face and get so excited when they see in on the 'kid captain' flags. They (we) pray for Oliver and your entire family each day. You, Stacy Palmer, are the most incredible woman/mother.

Jackie Cooper-Galey said...

Choking back tears here at my desk. I think of Oliver so often; I hate to hear he is having so many issues. Hearing him say he's ready to die has to be so, so painful. A kid should never be in a position to even think to utter those words. I will continue to hold your precious boy in my heart and in most fervent prayers.

MHefelKramer said...

Oh Stacy, while I cannot even begin to understand you pain and what you are truly going through because I believe no one but others in the same exact situation can. I can relate to the feeling of anger at those close to you who seem to disappear when you need them the very most. I am my mother's caretaker, she has been sick with dementia for 8 years now. And you have every right to feel as you do, and God Bless you for expressing it and putting it out there! I too hate those quotes...they always make me think too that the person must be totally clueless. I, well my whole family thinks you are amazing, all of you! There are no magic words I can say, so I will just tell you thank you for sharing your lives with all of us, and that I send my my love and prayers, and many many hugs for Ollie, the most Lovable Ollie.

Anonymous said...

Stacy,

I just wanted to tell you how very sorry I am for all that you and especially Oliver are going through. It is horrible, and agonizing to watch your child become more and more debilitated - knowing they are fully aware - there are no words for how horrible it is. I am just sorry and you are in my thoughts and prayers.

My 14 year old daughter died of a brain stem tumor (glioblastoma multiforme) three years ago. She was perfectly healthy before being diagnosed one year earlier. Our hearts are broken, and I know yours is, too. I am so sorry.

Again, you, your family and most especially Oliver, are in my thoughts and prayers.

Carol Herrmann, Caroline's mom
cb/carolineh

Krista said...

I am bawling! I hate to hear that he is pain! I know how much you deal with concerning your own health issues. I pray always for added strength for you and ed to be able to be strong for Ollie! I pray for relief! I pray for peace and comfort for all of you! I love you guys!

lisalisa said...

Like hannah, I read every blog entry you put out and I dont always comment...I just dont know what to say and anything I can think of just sounds so inadequate. I cant even imagine what you guys are going through. But I can tell from this journal that Ollie is blessed to be surrounded by such love and care. I am praying that your whole family will be lifted up and comforted through this time.

Amy said...

I am in tears as I finished reading your blog. Poor, sweet little Oliver. But what a blessing to have the gospel to give some much needed comfort. How wonderful to be surrounded by so much love ... I pray that you all will feel the comfort and blessings of the spirit while you are continuing through the journey. Much love, hugs, and prayers,

Amy Halterman

Barb said...

Stac and family, I can't even imagine what you are going through. My heart just aches and the tears fall when I read your posts. I love seeing you every week and I only wish there were more that I could do to ease your pain. I believe that God has a very, very special place prepared for Ollie and once he is with his heavenly Father he will once again laugh and play and look down on you with so much love for everything you have done for him. Love you so much.

Barb

Anonymous said...

I am so sorry for your amazing family. I want to tell you that you are all incredibly brave, and it is so helpful to others to share your situation and feelings. Oliver is obviously an amazing person. It is my hope that we can all learn more about DIPG and increase awareness and funding into this horrible cancer. If they can find ways to fight this aggressive type, then many more kinds of cancer victims will benefit as well. My prayers for peace for your beautiful family.

Cory Bates said...

I can't even come close to understanding how you and your family feel at this hard time. I pray for your family often. You are such a strong woman and I don't know if I would handle all of this in such a strong way. I truly admire you. Please give Ollie our love and let him know so many people are thinking about him.

meghan said...

i am sorry to hear that he is in pain. That he is so aware and scared. It breaks my heart to think of your sweet little guy being scared. I am glad he has been surrounded by family and friends. How I wish we were closer. The kids constantly ask if we can come and visit. I hope they will remember the happy memories with him. All the fun times our families have shared together. I want them to know how great Ollie is!!

Julie said...

Stacy,
Although we have never met I want you to know how much I do think of you during the day and how much I think of Ollie. I personally appreciated your It's my blog, I can vent if I want to...I am not one for ever sugar coating things and often times speak before I have the complete thought. I agree Cancer just sucks. I could add some descriptive not appropriate words in front of sucks...I am a cancer survivor however I lost my Relay for Life partner and best friend to a brain tumor at 18. I kind of pray to him sometimes...I asked him to meet Ollie at the gates of heaven and to take care of him because he is amazing. I know that might not bring you much comfort but if you ever want to yell at someone and say it like it is I am truly here for you. I continue to think of you all and I check in several times thru out the day. Sending hugs from Iowa...Julie

Anonymous said...

I've been reading your blog for quite some time now, and I just wanted to say that no one can make little Oliver's life as special as you do. You have a beautiful family with beautiful hearts!

Anonymous said...

Ive been reading your blog for a while now and think you are amazing and cant even begin to describe my admiration for Oliver.

You and your family are an inspiration with how you have coped, I cant even begin to imagine what this has been like for you.

My thoughts and prayers are with you

Anonymous said...

Stacy and family I wish I had some wonderful words of wisdom to help you through this trying time. You are an amazing family and Oliver is an amazing boy. I check your blog often and my heart breaks with each passing day. I hate that Oliver and all of you are going through this. I am sending lots of prayers and hugs.

Naomi said...

Sweet Stacy - Please know that even though I don't comment on all posts I read them all as soon as they're up and we'e been praying for Ollie ever since he received his diagnosis. I wish I was there to do more. He is such an example to me and even though I have not met him I seem to feel his amazing spirit through your heart felt posts. You are a wonderful woman Stacy and please tell Ollie again that he is an inspiration to me and my family to be kind and loving to all those around us. I'm so sorry that he is going through so much right now. We will continue to pray for comfort for him and for your entire family. Love you so much. Wish we lived closer. I'd crank up the Killers with you. - Naomi

Connie Phillis said...

My heart goes out to you, your family and Oliver. You and Ed are doing such a wonderful job preparing Oliver for his next life. No parent should ever have to go through what you are going through at this time.

Prayers to you all.

shandaatwood@gmail.com said...

Praying for the Lovable Oliver and your entire family.

Karen said...

Oliver is so, so lucky to have you in his life, and you to have him. Your bond is amazingly strong. I can't imagine what you're going through and I will continue to keep your family in my thoughts and prayers. It makes me so sad that you guys, or anyone, has to go through this. Stay strong Mama.

Anonymous said...

Have you heard of The Gerson Therapy as an alternative cancer treatment? Seems countless people have found a cure where traditional medicine failed them. Wishing you all the best during this difficult time. No mother should have to see her child suffer so!

The Gerson Institute

Anonymous said...

Here I sit, a total stranger from Ohio, weeping for you. From one parent to another...I am sorry you all are facing this heartache. Hoping for peace for your house...Much Love, Traci (Lewis Center, Ohio)