Friday, December 2, 2011

December 2011 - Update

We've just started the month of December and I have tons of posts to catch up on... still from September on up. Ahhhhh... life certainly doesn't slow down. We've just been having fun and trying to stay positive (as much as we possibly can) during this time. We've been pretty busy this fall. Oliver has been able to do so many fun and memorable things which has been fun to see.

Hospice currently comes every Monday to check Ollie's vitals and make sure we have anything we need. They will come more often as his health declines. Right now it seems like he's plateaued a bit which is better than declining that's for sure. The hard thing is that he could pass away in his sleep at any time or his health could decline so much that it could be a long, drawn out process of watching his abilities slowly fade away. He could lose his ability to eat, talk, walk, move, see, hear and eventually breathe. Throughout this journey I have prayed for no pain for him and that if it is Heavenly Father's will for him to pass away that He will be merciful and allow it to be quick and painless. I pray for a spiritual experience and to have the faith and hope needed to get to that difficult point in this journey.

We've known from the beginning that kids do not survive this type of brain tumor. It's like the black cloud of tumors hanging over the entire journey, not letting many rays of hope break through. I've had hope and faith in varying degrees throughout this journey, but I've known that the end wouldn't be the end I had hoped for. I know I need to have faith that all will be made right someday and that I will see him again. I do believe that. I just want him here. I've been watching lots of home videos with Oliver singing, dancing, playing baseball and capoeira and all sorts of other funny videos and I.JUST.WANT.HIM.HERE.

It is hard aligning my will with Heavenly Father's will. He knows all things from beginning to end and I just know what I know at this time in my life. I'm having difficulty fully letting him go. Anyway...

I wish it could have been another way. Granted... I know that he IS still here, but I KNOW where his path is heading. It just disgusts me. Why Oliver? Why THIS type of cancer? Why isn't there anything else we can do? WHY.WHY.WHY. AHHHHHHH!!!!

He looks nothing like he did in the videos we had been watching. I find myself thinking of that time, 'healthy Oliver'... and how different he looks and how much more he used to be able to do. It makes me so sad to have seen the decline in what he can do. He used to be such an active kid -- just a short, stocky, muscular kid runnin' around. It just blows my mind seeing what WAS and now what IS.

What do ya do?! There really is a loss of control at this point. A very tough place to be just letting nature take its course with the help of steroids. There may come a time when he decides to stop taking the steroids. I know he hates them. He calls them his 'fat pills' because they make him gain so much weight. He told me the other day that his face 'isn't my face, mom'. It's been hard to hear how he is feeling with regards to how he looks and what the meds are doing to his body.

Anyways... it's late... 5:30 am and I still haven't been to bed tonight. Just thought I'd post that he's pretty stable and we've been trying to do some fun things together -- making memories.

25 comments:

Anonymous said...

God Bless you and your family. I have no words, but my heart feels your pain.

Praying for love and peace for you.

The Morrison's
Edmonton, Alberta, Canada

meghan said...

I'm so glad that you guys have been able to make so many fun memories together. I know that will not replace him but hopefully bring some comfort. My heart aches every time I read your post. I just love you and your family so much. You all are never far in our thoughts and prayers.

Anonymous said...

My heart aches for Oliver, his siblings and you Stacey. I have been following your blog since the diagnosis. I cannot imagine your path and how I would handle it if it were the path I had to walk. I pray for Oliver, the family and friends each day. I pray that God holds Oliver in his arms and I pray that God provide your family the strength, belief, and reassurance of his love. Take care and continue building memories.

JinxBP said...

Hey Stacy, I completely relate! This horrible disease eats away at our children and we have no real way to comfort them. How do we explain to our child that they are going to pass away and make it alright with them? Simple, we can't because this will never be alright with us or them. Skylar has made some very similar comments to me about the steriods and the other meds. She had a bad dream the other night that just about killed me to hear her say "in my dream mom, the doctor said the tumor is back and there is nothing left to do but to put me down" needless to say I didn't sleep after that I laid there holding her telling her I would never put her down like she was an animal! Its so hard dealing and watching this attack our kids. I pray for a cure in time for our extremely brave little ones, if not for ours soon before another family has to go through this hell. I wish I could be there to give you a hug and just be there for you! I wish Ollie and Skylar could have more time to know each other and maybe find some level of comfort in their battle! I'm sorry I'm rambling so I will wrap this up. Know that I am here ANYTIME you need me, I don't care. Please, I beg you to keep me posted and lean on me when you need me! I will be here for you and your family! Keep your head up and God bless! Much love, Bambi

Janene said...

Stacy, you have such a big heart and you are the best momma to your babies. They are blessed to have you, and I love how you've ALWAYS put things on hold for your kids...they've been top priority always. Oliver was blessed to be sent to your family and have the amazing parents he does. We love all of you so much!

Janene said...

Stacy - this is such a hard thing. There's just no way to say anything else. What I admire and love about you is that you have ALWAYS put your kids first, and not everyone does that. If you can play with your kids or have a perfect house, you PLAY! and that's the way it should be. You are a good mama to your babies and they are blessed to be in your care. We love you and pray for you and your family every single day.

Bobbi said...

Stacy <3
Oliver is so brave, it breaks my heart to know his fight at just 10. And it is not fair!
Your strength and courage is admirable.
I too pray for peace and comfort for your little guy. That is the least he deserves.
Oliver has taught me many things Stacy! He has taught many people many lessons, you can be sure of that :)
You have so much to be proud of in him. His legacy will be long lasting <3
I love ya Ollie....to Infinity and Beyond little friend <3

Jodi said...

I'm praying for you all....every single day. All the time.

I have no answers...only compassion in my heart for you all.

Oliver, you're beautiful in EVERY way.

Love you always,
Jodi

Anonymous said...

I am so sorry you have to go through this... you and your family are so strong. Ollie seems like such a loving, exciting, brave kid. He seems like the perfect role model for his younger siblings. As an oldest child, I've understood that role my entire life. I really hope he makes it through this. You, Ollie, and your family will be in my prayers.

Kathy C. said...

I thought of you and prayed for you when I saw that GMC movie The Heart of Christmas a few days ago.

Anonymous said...

I would like recommend to check more possible clinical trials with Memorial Sloan-Kettering Cancer Center in NY and Scripps Institute at San Diego.

LaTonia said...

Oliver, you are an amazing young man! I have a rare type of cancer too. You're story helps me to be brave. Thank you for sharing your story with us.
Big Love,
From Texas!

Anonymous said...

Hi Ollie (and family),

It's cold & damp here in England. It is also dark as the time is 6:24pm. I've just read mom's latest blog entry & she says you're not liking those steroids? Hey I don't blame you but remember the real Ollie is your soul & even steroids can't change your soul! You are a superstar Ollie. You've had to put up with such a lot since diagnosis & you've inspired me with your determination. Keep on believing in yourself sweetie & you'll stay well.

Ive got a very noisy puppy who is demanding my attention right now. I didn't know a little dog could cause so much havoc! He's quite adorable though with his ginger colouring & funny doggie talk. If you know how to speak in dog let me know as I could do with a translator.

Stay well Super Ollie! Your are my little inspiration from across the pond.

Much love to the Palmers,
Carey Kenchington

XxX

Brian VanBevern said...

my name is Brian im from macomb il
merry christmas oliver stay strong for god will be there for you My prayers are with you and your family.

Maggie Fleming said...

Praying that God wraps his loving arms around Oliver, you and your family and friends and may he give you the strength and graces you need. Thank you for sharing your story with us. I pray for peace and love for you during the Christmas season. Oliver must be a very special young man.

kelly Shockley said...

Hi,Oliver and Family I will pray for u and your family.We all will see you get your xmas wish.God Bless You lil guy.

Elizabeth said...

Oh Oliver, I don't know what to say. I'm so inspired by your strength & determination. Someone so young shouldn't be going through what you are going through, however from what I read, you are dealing with a lot more maturity than some adults I know!

Praying for you here in Australia xx

MHefelKramer said...

Hi Ollie, Stacy, and family! I just put a card in the mail for you today!! I think of you often! I do artwork specifically portraits...if you have a picture of Ollie you would like done...I would be honored to do it for you! Just email me the picture mhefelkramer@gmail.com! Love always the Hefel-Kramer's

Anonymous said...

Wonder if you could get him hooked up with this org: www.gktw.org It's in Kissimee near Disney, nearly all volunteer run week long vacations for kids with life-threatening illnesses and their families. Free.Not just the park but also hotel, air, meals, etc. How cool is that? Oh and they will work with the family to get them there right away when time is really short!

MHefelKramer said...

Also would like you to know we are praying for you, and think you are such an amazing boy! You have touched more lives then you will ever know!! Please know that you are on our minds daily... Stay strong! Much love...
I don't live far from you and I have a barn full of horses that would love to meet you all, if you would like :)

Anonymous said...

Dear Oliver & family,

I am so sorry that you have to go on this difficult journey. Oliver, you have touched my life and the lives of so many others. I sent you a Christmas card today; I hope it gets there before Christmas. You seem like such a special boy and I hope you realize how special you are.

Sincerely,

Jennifer DeFosse

Katelyn Corrine said...

Our thoughts and Prayers with you and Ollie. Your courage and faith is amazing... May our heavenly Father hold you in his arms and offer you comfort.
Tara Hansen.. (Kate's MOM)

Peggy & Bill said...

Ollie & Family - I just found out about the fight for life of this little guy from a classmate on Facebook today.
This has to be the hardest Christmas to celebrate. Knowing that Ollie's health is declining & facing a future of uncertainty. But.... you have the best strength in your family - your faith in our Lord Jesus Christ! It is not our place to question His will & it is hard to let His plan unfold. Just knowing that Ollie will get to that beautiful place before us may give you some comfort in know you will see him again in a new, painless body.
May God hold you in the palm of His hand & give you comfort, strength, peace, joy & love as you make many, many lasting memories!

Farrah said...

Thank you for sharing Ollie's story. We mailed out a Christmas card for him tonight. We will be praying!

from Muscatine, IA

Anonymous said...

Hi Stacy, I was introduced to Ollie's story by a friend of a friend of a friend! Pretty awesome, huh? To make a long story short, I was deeply ministered to as I read your updates! I sent Ollie a card this morning hoping he makes his 1,000,000 cards for Christmas! I also ordered a special book for which I am enclosing the link (http://www.justlikethatchildrensbook.com/). Marne is a dear Facebook friend of mine and when I shared Ollie's story with her, she shared that she felt Ollie would like this book. The book will be sent directly to your home for Ollie. It is my prayer that learning about Heaven as shared in this book will bring some peace and comfort to Ollie and take away some of his fears. I will be keeping up with your BLOG from now on and praying that God will continue to bless you all with the understanding that only HE can give! Your story and journey is bringing a ministry of strength, hope and faith to those who follow your BLOG...me included!

Micki Talcott
mickitalcott@hotmail.com