Tuesday, April 28, 2009

Just trying the best I know how.

I am starting this without even a title ..why? Because I can not think of a title for this. This is going to be a mixture of a lot of emotional stuff. And that in itself makes me feel bad..or should I say self conscious...Let me explain.



I never wanted my blog to become my emotional dumping ground. In fact I started this blog before I even had a idea I was sick with cancer . I also started it because I wanted to have a place to share everyday life things. But if I am honest with myself and all of you...lately my medical issues and the seriousness of Philip's medical condition is my everyday life. Along with the other areas I try to share.



In no way is this a plea to get any of you to come here and say..oh no we want you to not feel bad for venting here ..etc. I know you all want me to have a place to come. I also know you want me to come here and share. I just know that it can get old, hard and draining some days. And that is just me being honest when I think of all of you coming here reading lately.



Now ..let me say..No I do not write my blog to "keep my readers" or to please my readers" etc. I write my blog for myself. But if we are honest as blogers we all get attached to our readers. We all want our readers to stay and we build relationship with our readers and become friends. So for me it is not as simple as ..who cares..



But I also know I am who I am...and this is who I am..so here it is.



Today I am a mess. Last night things came to a head and today is the hang over from that. I know there is a light out there. I know God has promised me and each of us that. But today I am human and hurting . The more I have tried to talk myself out of it the more the tears have fallen. I will be honest with you...I really hate days like this. I do not have time for them. I have a lot to do. Appts everyday. Medical issues to deal with. Insurance issues that need to be resolved for Philip's operation. Follow up care to be arranged. My records sent out to find a new oncologist. Getting the house ready for Philip's OPERATION. On and on. To sit and cry and dry my tears to only cry again..is just taking a toll today.



I think what has finally hit me is...there is no easy fix to any of this with Philip. No magical fix. No operation. No pill. Nothing I can do. We have been doing this for 19 years. We have watched Philip suffer from one thing to another to another. And as his parents has always pushed him and supported him to be as active and "normal" as possible.

Let me explain to you why this is such a hard blow for me right now.

Well for one..I am worn out and fighting my own battle. I think the fact that I have not recovered fully from the 3 major operation in the past few months has taken a toll. Along with the chemo and the plain worry of being sick and not being here to be a mom to my children. In no way am I feeling sorry for myself. I bring this up to point put that I think it makes me feel less in control of anything in my life.

But also the medical issues that we are dealing with now with Philip are new and even more complex then the ones we have in the past. The simple fact that there is a possibility of that is scary and shocking. I use to think his stroke on his right side was just so sad. The multiple operations to try to fix anything we could of that side were so painful. The leg length difference, the nerve pain, the cutting and turning of bones...the machines to stretch the bones..all of that failed. But we did it..why? Because we needed to try anything and everything we could. That is what parents do.

The dreaded mass in the brain stem. The thing that started all of this..came back.. How can you have a mass that cause so many issues ..brain operation 6 weeks old..brain operation stroke 6 months old..brain operation..shunt broke off 5 years old..pseudo tumor need two more shunts..Why in the world would it come back..and be so embedded so deep in the brain stem and be surrounded with artery's. They can not go in and shunt it cause they can not get to it without the worry of him bleeding too death. They can not remove it because he could bleed too death. They can not remove the foreign object in his brain stem embedded in a mass cause the risk of him bleeding too death. They do not want to leave it with a new operation and two shunts in cause the risk of infections. Damn brain stem mass. I hate this brain stem mass. I know it may seem crazy . And really it is. But I really hate it. It has changed our lives and it has haunted of since Philip was 3 weeks old.
So now we deal with seizures. They are so deep that it causes a issue with medication. Know what the cure is? Cut out that part of the brain. now mapping that part is complicated because his brain has re routed somewhat because of the stroke at such a young age. Which let me add we are thankful his brain did re route .
So now all of the sudden there is this new issue with the left side. No one can figure out what it is. They can tell us what it is not. Of course while they are searching they find a host of new issues..a syrnix in his tspine and some kidney issues..
How the heck can he go from no problem with his left side to waking up one morning with a left side pain to losing strength in his arm and now leg and severe pain and lack of reflexes.
The last few weeks have been hell for Philip and with him. He is weaning off 60 MG of extended release Morphine and 50 mg of percoett ...He is sick and angry and hurting. Plus now his headaches are back full force. He can hardly get out of bed and needs help getting up and getting dressed due to the pain. He is due to wean down even more in 4 days.

AS a mom I want to be supportive and I am. But it is getting hard. I am sick. I am worn. And maybe I am just feeling a tad defeated too. Bless Philip..you know how much I love him..but withdrawals are harsh for those in the path.. Just to clarify..Philip has to be off his prescribed meds before his OPERATION bu May 5th. The DR knew how hard this would be. I thought I did. I was very wrong.

Philip being still a kid. Wants to back out of the OPERATION and go back on the meds. That is not a option. He can not live his life drugged up. I know he is scared of the next wean date. So am I.

On top of all of the medical issues for Philip. We are facing some other battles. This has been a long road. As many of you know even a short medical battle can hurt a family finally. We have been doing this for 18 years. In reality things have piled up and we have fallen behind. Between my operations, my ongoing treatments, Philip medical and up coming operations and future rehabs and Jim being out of work for 2 months..reality has taken it toll on us. I have been trying to work with our mortgage company to get caught up. It amazes me that some companies just do not want to work with a family, no matter what. I would ask for your prayers in this area.

After speaking to the Dr yesterday. It was decided that after Philip heals some from this complex operation. He will need to be treated in a out of state hospital. There are three options. Duke, Mayo, Sloan...non of which are in Florida. But according to the DR..we have to find a place that can help Philip the best. We have exhausted the testing here. His records are being gathered and DR being contacted as early as next week. We will meet with the DR next week to discuss some options. I do know that while this will be complicated with Philip and I being away from family, finding a place to stay while out of state, and me finding a balance between my health care and us getting Philip taken care of...this is a blessing ...our prayer is to find some treatment that can help Philip.

I would also like to thank all of you who visited Philip's party or donated to his fund with the button on the side bar. This money will be used for his medical cost. Between the operations, home care, Rehab and then being away for possible months from home. You can imagine even with doing this for so many years these next few months are a very scary time for our family. So thank you all.

I would like to thank all of you who pray for Philip and our family. I will admit some days it is all that gets me through the days. There have been days I have been sitting in a DR appt and I can actually feel the support. What a wonderful blessing each of you have been.

This has not been a short battle. There is no road map. There is no treatment plan mapped out. And I am having to dig deep and depend on God like never before.

I may not be doing it pretty..but I am doing it. We are so blessed to be Philip's parents. I thank God everyday for letting me be the mom who gets to take care of him. What a amazing road he and I have traveled. But even on great trips..sometimes you can get weary or tired. I pray that Philip and I have 100 more years together...I love him that much..

Thank You for letting me get this off my chest today.

20 comments:

Blissful Babe said...

Oh Amy.
I really have nothing poignant or meaningful to say.

I can just offer virtual hugs, thoughts and prayers for you, your healthy, Philip and his and the whole family.

Don't forget to take care of YOU. If you can't function, you can't help Philip. :) Hugs.

Mari said...

Amy - Like Blissful Babe said - you need to take care of yourself. If that means spilling your guts here - you need to do it. And - although most of us haven't met you in person, we do care about you so we want to be there for you. I'll keep praying.

Anonymous said...

Praying....Praying many times throughout the day and when I awake during the night.

Heather, aka Jake's Mommy said...

We're just praying. I really just don't know what to say, besides God has a plan. When everything is spiraling out of control, God is still in control and everything is being done. One door closes only so that another may open. You can rest on the promise that God is in ultimate control. May that is the only thing you can REST on right now, but it's there.

Jennifer said...

I wish I knew what to say... I will keep remembering you in my prayers, for God is the only one who knows your deepest needs and He is the only one who can sustain you. I will carry you to Jesus in my prayers. Phillip, too.
Please do take care of yourself somehow. Your body needs some rest.
You are loved.

Blessed Mom of 8 said...

Amy,

I have been saying this a lot to you lately.

I don't have the words I wish I did - to comfort you and touch the place so deep in your heart to know it is OK to be exactly where you are right now.

This is YOUR blog. This is YOUR place to vent, hurt, cry and share whatever you need to. You don't need to sensor it or explain why you are hurting the way you are.

There is no judgment in the eyes of the LORD to whom He loves. The judgment from man to man is a sin. The only one whom we all must please is Him and He knows we all fall short of His glory!

I am lifting you up right now and trusting God to bring peace that surpasses all understanding.

If you come up north with Philip I will do all that I can to help!

My heart breaks for you and without ever meeting you I love you! Not because of anything you do or say - but because of Him!

What a blessing to share the burdens of this life together. We are Sisters and as such you are my family - together for eternity!

Lots of hugs and love,
Jill

Please take time for you.

Vivienne said...

I'm praying. I'm glad you can use your blog to vent.
Hnag in there.

Eyeglasses & Endzones said...

I think that all of us are in agreement that you need to have someplace to put this stuff or it sits inside you which is not great. We are all here for you, praying for your family and everything that you are going through. I don't know what it is like to walk in your shoes but I am here to support you in any way that I possibly can and blogging is THERAPY....really great, cheap, Therapy!

Praying for you and your family to find strength and solace in all of this. (((((((((HUGS))))))))))))

Momma Miller said...

Oh Amy. My heart hurts for you in times like these. I see how happy you are and yet I know you face the very difficult things that many of us don't even dream of. Keep writing. We're listening and praying.

~Shaye

Hope said...

Deep breathes, Amy! You know that you and Philip have my prayers. I'm thinking of you, hon. I wish I lived close, I'd help if I could.

((Hugs))

Shari said...

Amy: I hear your pain, frustration, and tiredness. I believe these are all normal in your situation at hand. You have a lot on your plate Dear One. I continue to pray for your family through all these struggles. May you feel the loving arms of Jesus around you as you endure the days ahead. Much love and hugs to you!

City girl turned Country Girl said...

OMG Amy I am feeling such pain for you. I had to catch up my reading as I have been without internet for a few days. And I see that things are not going well for you, and I know you don't want me to say this but I am so sorry...I will be praying feverishly for you and Philip and your family...

Katamommy said...

I am praying for you and your family!

Charmaine said...

{{Big Hugs}} I feel your frustration, your tired-ness and your fear. I wish I had something to say other than you are in my thoughts and prayers...

Cathy said...

God bless you and Philip!

April said...

Amy~
If I lived closer to you, you can bet your boots that I'd help you any and every way I could! You'd probably get sick of me, in fact! Since I don't, all I know is to offer my prayers and my compassion. As many of the other commentors have said, you have to find a way to take care of yourself because you will be of no assistance to Philip if you don't. Is there anyone who can come in and relieve you for a little while everyday, or every other day? I just don't want you to wear yourself out mentally and physically. You have a lot going on, as well. May God Bless You and hold you in His tender-loving care!

Kristine said...

I am praying for you and Philip. I wish I could do more.

Mimi said...

I wish I were near you so I could help in any way you would need me to. I wish I could be there. I am so sorry for all of this but you are such an inspiration to me. Your faith it amazing!

Kami

The Rowe Family said...

Just found your blog tonight, what an amazing story. You are a very special Mommy! Emily, Sayre, PA

CFMama said...

Found your site through the Serious Life Magazine. I will be praying for your family and Philip!!!