Thursday, November 11, 2010

I HATE DIPG!!

Oliver was added to a website called, the Wall of Courage, for children with brain tumors. I am sickened... absolutely sickened by this disease. Most of the children with DIPG are gone from this earth. I am angry. I am horribly at a loss for words. I feel sick to my stomach because I know that this doesn't end well. I know, I know... you can say "You'll see him again...", but it does not erase the heartache. The ACHE in my soul to know that I will be without him for the rest of my life on earth. How will his sister take it? She can't even sleep in her own bed by herself. They are always cuddled up together and they always have been. Will I crumple down in tears when Jaren asks me where he is after he is gone? How will I explain it to him? Will his baby brother even remember him? Will he remember how much he adored him? That he rakes leaves outside just to see his brothers sit and play in them or that he kisses his sweet face and just loves him so much.

I'm just a sobbing mess right now. I will never be the same person that I used to be. I've already changed... that I can see. I know that Eden is hurting... she'll be 8 in a few weeks. It was always Ollie and Eden for so long and then years later Jaren came into our family and then Phineas. I feel like I'm becoming a different sort of mother. I just can't seem to bear my burdens. I feel lost and hoping for someone to help me find my way. I can't be the light shining in the darkness for others right now. Sad doesn't even come close to the feelings that I feel. Death feels like it's all around me. I need to find the joy in the journey, yet I'm struggling immensely to find anything past despair.

I told a good friend of mine that some days I feel blank... some days I want to scream and cry... At times I feel like it's just a horrible nightmare and someone will say wake up... no such luck. He's doing so well right now. I have to count THAT as a blessing. I truly do. Today I am just hurting so much. Hurting for him, for my other kids, for myself and the rest of the family.

I was reading through several of the DIPG sites about each child and just sobbed and shook my head. Can this be true? Nearly all of the DIPG kids have passed? Yes, there is always hope, but this future outcome is bleak. Some days I feel hopeful and others I feel absolutely hopeless. It is a nasty thing to have to live through day to day not knowing how you are going to feel hour to hour or minute to minute. I just wish to meet these other families and be able to support one another in these darkest times. I feel as if I withdrawl from people because of their withdrawls from me. I just don't know why do many other things happen because of one thing. It's not as if it's easy to deal with them all at the same time!

18 comments:

Megan said...

I am so, so sorry. Sending love your way.

Jamie W said...

I just wanted to leave a little note to say how sorry I am for your horrendous pain and trial and let you know that you have people {who don't even know you!} who are thinking about you and Oliver. I am so sorry that your family is having to go through this. Hug from me.

meghan said...

My heart aches for you. I am sorry we are so far away. I wish we could be closer, if for nothing else just so i could be there to listen..

kim Huffaker said...

I have felt all of thses feelings too. I think its wonderful that you let Ollie participate in his own blog. I let Brandon write what ever he wanted and he also read the messages left for him. He liked to see how many people visited his site. Watch the numbers get higher and higher. I will read more of your site in order to get to know Ollie better. Thanks for checking in on Brandons site. I know that its painful and discouraging to see the losses. Particularly when you are still filled with hope for your Ollie. Dont give up hope. Its the best thing for Ollie. Hugs to you and your family, Kim Huffaker

eureka1951 said...

My heart breaks for you and your family Stacy, especially Oliver! Praying for you!

Terynn said...

Of course, there is nothing I can say after reading your post. My heart breaks for you, because I am a mother. But I cannot relate to the feelings you are having, I can only imagine them.

Nightmares such as yours are so unfair and unfathomable. I think of the Natalie Grant song, "Held", as I read your story. There just are no words that fully comfort, that fully satisfy.

I know that the Cedar Valley knows your family and loves your family. I know that many are praying. It is not enough, of course...

May you be aware of His Presence, His actual meaningful, intimate presence, as you go about your day. May you hear and know his still, small voice, as he speaks, just to you, His precious daughter.

Piepee said...

Hugs to all. Stacy you as I have always said are an incredible mother in an impossible situation. I missed you at church today. I was hoping to see you. Love and prayers. If you ever need to spout. I have no answers, just love and understanding as much as is possible.. 235-0180 It was good to see you at the nursing home.

Shar said...

i love you my friend

Anonymous said...

My nephew was diagnosed with DIPG in late August/early September 2010. He is about 6 weeks out from completing his radiation and still requires a heavy does of steroids. We don't see the dramatic improvements we had hoped for. If you dont mind my asking, when did you really start to see improvements in your son?

Stacy said...

I know that each child is different because their tumors are different and the radiation and steroids may affect them differently. Ollie was diagnosed on December 23, 2009, finished his 6 weeks of radiation on February 11, 2010 and was still on steroids and anti-nausea medication for a few months following. We went to Florida for Ollie's Make*A*Wish trip mid-April and he threw up every single day on the way to the theme parks. Since May he's been off all of his meds besides his inhaler and allergy meds that he was on before. We have chosen to forgo chemotherapy at this time and he's been doing really well. The most noticeable physical symptom he still has is his inward turned left eye. He still feels nauseas in the mornings, but rarely complains of it. He gets upset more easily and cries about small things, but other than that he runs and plays with his siblings. Where are you from and what is your nephew's name? How old is he?

Shelley Lanz said...

Oh Stacy, I just read your note to me on Caleb's caringbridge and I wanted to stop by here and write back to you... reading your last post on here breaks my heart.... I am where you are. I know your anger and your fears... we are on the same stupid, horrible, heart wrenching path. Life is very lonely having a child with cancer, it seems strange to me that so many people scatter but it makes me more appreciative of those who care enough to stick around. Avery just turned 7, I have had her in counselling a few months back but she refuses to talk about anything that bothers her... she just speaks about trival things so it ended up seeming like a waste of time for her and I don't think the woman was a very good fit. I will need to look at getting her in to talk to someone else. I HATE DIPG too and please know that although we are miles away I am here for you... might be nice to chat from time to time and vent... have someone to talk to that really understands. My email is cscalanz@shaw.ca and my number is 250-869-0810 I know it is kind of strange because we have never met but I think we could maybe help each other. Anyway, I also wanted to thank you for writing to me... you are right it is very comforting to read what other write.
Always with love and hope
Shelley

Heather said...

Just sending our love and prayers from Washington. We wish we could take this away from you. There is nothing easy about it. Keep loving that little boy!

The Adams Family
www.maraadams.com

p.s. we are here for you if you ever want to talk!

Emily said...

Wait
by Russell Kelfer

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate...
and the Master so gently said,"Wait."

"Wait? you say wait?" my indignant reply.
"Lord, I need answers, I need to know why!"
Is your hand shortened? Or have you not heard?
By faith I have asked, and I'm claiming your Word.

My future and all to which I relate
hangs in the balance and you tell me to Wait?"
I'm needing a 'yes', a go-ahead sign.
Or even a 'no,' to which I'll resign.

You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
Lord, I've been asking, and this is my cry:
I'm weary of asking! I need a reply.

Then quietly, softly, I learned of my fate
as my Master replied again, "Wait."
So I slumped in my chair, defeated and taut,
and grumbled to God, "So, I'm waiting...for what?"

He seemed then to kneel, and His eyes met with mine...
and He tenderly said, "I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.

I could give all you seek and pleased you would be.
You'd have what you want, but you wouldn't know Me.
You'd not know the depth of My love for each saint.
You'd not know the power that I give to the faint.

You'd not learn to see through clouds of despair;
you'd not learn to trust just by knowing I'm there.
You'd not know the joy of resting in Me
when darkness and silence are all you can see.

You'd never experience the fullness of love
when the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you'd not know the depth of the beat of My heart.

The glow of My comfort late into the night,
the faith that I give when you walk without sight.
The depth that's beyond getting just what you ask
From an infinite God who makes what you have last.

You'd never know should your pain quickly flee,
what it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true,
but oh, the loss if you missed what I'm doing in you.

So, be silent, my child, and in time you will see
that the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still "WAIT".

Anonymous said...

Have you ever heard of Cole's foundation, they are an awesome site for prayers and support. If you have time, you should check it out. I would love to see a boy from our area on there, it seems to be a huge support for families. Praying for Ollie. www.colesfoundation.com

Amy said...

"You will see him again" is so abstract. It's not like you are departing from an old friend to see again next week. Although that sentiment seems to be dispensed as if that were the case. Friends scatter because they don't know what to do. Grief is so unpredictable and upsetting. Not many have been taught to face death or sad feelings. I will always be praying for you my dear friend.

I know lots of blank cards and trust me you might feel like you are but you aren't :)

Lindsay (DeHoff) Rogers said...

Bless your family this Christmas season. I am praying for you and your family and my heart breaks for you Stacy. God is holding you even though there are days you can't feel him. All my love,
Lindsay

Hone Family as in Ryan and Ashley said...

You have no idea who I am, but I occasionally check in on Ollie to see how he is doing and how you are doing. I stumbled upon your blog somehow quite a while ago. I will keep you and your family in my prayers. There is nothing like losing a child. I say that from experience. It hurts. Hang in there. I will also pray for peace to be with you.

Anonymous said...

Hi Palmers,

Checking in on how you are all doing. Sorry you are in a dark place right now. I'm in that pit of despair because of the anniversary of the death of my dad last Saturday. One thing he always did was live for each day and "never worry about tomorrow until the day after tomorrow!" I'm a worrier so his philosophy may not suit me, but if I slip into that ideal, it makes things easier to cope with.

Please take good care of yourselves. It's my Ollie's birthday tomorrow and he wants to send strength and laughter to your Ollie. I send you love.

The Kenchingtons
England