Tuesday, December 22, 2009
Okay first I just have to say..Oh my goodness..isn't he so darn cute.
And I love him way too much....
He is such a blessing...
I wish you all could of been there to hear the conversation..
Santa..Hello young man..what would you like for Christmas?
Cole..Hey Santa...who is she and why is she here..
Me...Cole that is Mrs. Claus..she is here to see all the children.
Santa ..so Cole what do you want Santa to bring you..
Cole...well Santa what I want is at Toys R us on isle three on the top shelf...
Santa...Thank you Cole..you made that very easy for me.
Cole...your welcome Santa. I saw it on TV and it said it was ONLY at Toys R Us ..which means your elves will not be able to make it.
Cole...I really like your belt...I wish I had one like it..
Santa..I like your shirt...
Cole then shows Santa how long the sleeves are if you stretch them.
Sunday, June 7, 2009
I have been up sick all morning....my treatment has kicked my butt. I woke up very shaky and really sick . I have taken some of my meds and have the heating pad..I hate feeling so shaky It is hard enough to be sick but to be shaky and weak seems to make it so much harder..I think today might just be a really down slow day..and maybe that is just what I need. Okay I am done with giving the illness or cancer anymore attention in this post...I am thinking if I fake it is not here today ...I can make it a better day. Think it will work?
Is it just me or does he look like his hands are in the praying position? I am pretty darn sure he is praying that his Aunt Amy comes to visit him very soon. I need to be held and rocked and loved...oops..I meant of course He needs to be held rocked and loved.
This little sweet baby has kept my heart filled for months ...I love him so much and trust me he will know it. I am his only Aunt and he is my only nephew on my side of the family...so in my selfish eyes..I am thinking we only have each other...Can you see my point of thinking?
I had kind of thought my sister might not "take" so well to this mommy thing and call me and say come and get him...Okay well one can wish..huh?
Sweet Jackson...your Aunt Amy knows you are a gift from God made just for memememememe...and I love you..
Wednesday, June 3, 2009
Tuesday, June 2, 2009
Thursday, May 28, 2009
Our motto this year has been...We may not do it pretty ..But we get it done..
Wednesday, May 27, 2009
Monday, May 25, 2009
Friday, May 22, 2009
Monday, May 18, 2009
I am telling Philip that since there is a issue with "central line" I can find a vein..and I go to show him where I would stick him at.. Look at his face..poor kid looks a tad scared..NOT..lol
Friday, May 15, 2009
I know it looks like I am trying to strangle him..but I was really playing with him....
Wednesday, May 6, 2009
Tuesday, April 28, 2009
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.
Monday, April 27, 2009
I would like to ask for prayers and support today. I am going to stop thinking and take the step in the direction of doing ...
I know this all sounds very vague..and I do not mean for it to. But for right now...I just needed to tell you all that today I have reached a point that I need to try to do something...anything...to try to help Philip.
I am working on getting that started today.
Will you please pray for me to have the courage and the strength to do and say the right thing...to help guide this in the right path...and even more important to have the strength to follow though. Today is a hard day physically for me..so part of me wanted to crawl up in bed and just think some more. But thinking has not gotten me anywhere lately.
So I am going to work on a plan today....and it may not be a easy one.
I will be back later with some details ...and I hope some news.
Thursday, April 23, 2009
There are two parts of my heart. And sometimes it gets hard to keep them separate. I know many of you moms out there know what I am talking about. Another way to describe it is "trying to find that balance". One part of you is the sweet , carefree , loving, can do and be everywhere mom. The other and all too real part is the mom who is mom who feels sad, burden, loving and feels like she can fix nothing mom. I am both of these moms. And lately it is causing me to feel worn down...freaked out...like a failure...and never good at either one.
Now before you all feel like you have to tell me how much you respect me or how wonderful you think I am...that is not what this is about. This is just about some raw feelings that I have to say ..out loud to someone. And since my family lives with it daily. And really it is not safe to talk to strangers in the street. I come here.
Here...this is my place. The place I come when things are good. Things are okay. And things are sad or scary.
So back to my heart. Wanna know something. All of you who think I am strong . I think I am really weak. I have not been handling things very well. I have been worrying, and stressing, no sleeping, not eating and plain sad some days. Not everyday but more often the closer we get to surgery. Instead of feeling in control ...I feel like I am white knuckle every step of my life.
One part is me LOVES to come and post about the PINK. We laugh and we joke and we make fun happy memories. But they seem clouded..with THIS,
The thing is.I need to find a peace. A inner peace. I am depending on God. I lay awake at night and pray to God. I know that God has never let Philip down. On my worse days God has always lifted my heart and helped Philip. Yet I am not at peace. I hear the words to depend on God. And I think I am. Yet I am scared ...a deep scared.
If you asked me what I am scared of..I would have to really think before I answered. I think what scares me most is Philip hurting. I love Philip more then anyone person should love someone . From the minute I saw him I promised to always take care of him. And now I can do NOTHING to help him. I watch him hurt. I watch him suffer. I watch the seizures. I have watched him be wheeled off to surgery for 18 brain operations...I have watched him scream in pain...on and on..and there I am ..his mom..standing there..yes I support him...yes I love him...but I feel helpless.
Last night things reached a really bad point. Philip is in so much pain. The process of getting ready for this surgery is almost cruel. But it is needed. There is NO way around it. Like so many things in Philip's life he just has to do it. Well last night he was at a point where he had just had enough. I was sick from my treatment. Reed needed help picking out classes for high school. Emily was being a preteen girl. Cole was being spiderman. Jim was NOT doing the dishes. And Philip blew up and said he was NOT going to do the surgery. Well he has to do it. And so me being the mom I am..I tell him he has to do it..which he knows. He goes into a very emotional out burst and tells me I do not understand. And you know what he is right. But he does not understand how hard it is for me to watch him suffer too. It was just hard..sad...a little bit ugly..and a lot hurtful.
The end of the conversation Philip said something I will never forget.
He looked at me and with his lip quivering said..My future does not look to good mom.
Dear God..Please help me.. help my son...
Tuesday, April 21, 2009
Well Philip has had a teacher that has done all this and more. His name is Chris Bryans. He has been Philip's teacher for years and a friend to our family. Long ago I knew that there was something different about Mr. Bryans. Not only was he a wonderful teacher but a wonderful Godly man.
I can not tell you the times he has called the house to check on Philip. Or sent me emails to make sure he was okay. Tutored him all summer so he could get his credits in school. Picked him up and took him to a show to meet a very special Pearl Harbor Veteran . Then when Philip was about to go into the hospital for a serious operation this brave Pearl Harbor Veteran called Philip to wish his well. Because Mr. Bryans had told him about Philip's medical issues.
He even took Philip to interview one of the last remaining Pearl Harbor Vets for his final exams. What a wonderful blessing that was.
He also drove a group of teenage kids from school to come visit Philip in ICU to visit Philip. And has offered to do the same for this operation.
Mr. Bryans has always told me that if I ever needed anything to just give him a call. I think he may not do that again. Ha. A few months ago I got to thinking about Philip's birthday and what would make it special. Philip has always had a special respect for Bob Dole. Every time there was a book report in history that was due he would write it on Bob Dole. He added Bob Dole to his myspace. One day he told me a bunch of facts about Bob Dole. The one that stood out was...Bob Dole has little or no use out of one of his hands. He told me how Bob Dole would hold a pen in his weak hand so he would not have to shake hands with that hand. He also told me that Bob Dole reminded him that having only one hand did not mean you could not do something with your life.
As the years went on we would joke with Philip about Bob Dole and his Viagra commercials. Philip would just laugh and then go into great detail about how wonderful Bob Dole is.
So I called Mr. Bryans and asked him if we would help me get a book signed for Philip from Bob Dole. Let me tell you..if you want a job done..just ask Mr. Bryans.
A short time time later Mr. Bryans calls and tells me he has the book.
Yesterday Philip was surprised and honored to have a signed book from someone he so admires. Mr. Bob Dole.
You are a young man of courage and convictions.
Saturday, April 18, 2009
Friday, April 17, 2009
I do not have the words or energy to explain the defeat I am feeling right now with all of this. I am feeling the blunt of the issues with Philip. While I know in my heart he can not help it and is just sick...it is taking it toll on me. My patients is short and frustrated is high..but my faith is strong...I am just ....well I bet most of you know.
I pray that Philip has a better day. He is going through so much right now. My heart aches for him. I just so would love for him to just be happy, healthy and feel whole. Is that so much to ask for? I will not ask..I will pray for it. Maybe you will join me..
Few last details..
Some of you have asked about Philip's birthday. Yes it is this weekend. April 19th. And for those who asked..here is his contact info..
133 Terry Street
Indian Harbour Beach Fl
His operation is still planned in a few weeks..details here..
Please do not forget to check out Philip's online party..all proceeds go to Philip's medical fund..
Last ..if you would like to post about Philip's party on your blog...that would be great..or even put the button for it on your blog roll..I have the code..
Oh I lied...Last but most important...Thank you for being so wonderful to support our family with your prayers.