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.

Monday, April 27, 2009

Wanted To Share...

As you know I am feeling pretty helpless as a mom. I am a doer and I am doing NOTHING. I have been praying for a clear path to make myself feel like I am going in the right direction. Today I finally decided to take a step...

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

From A Mom's Heart....

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

A Very Special Thank You

Can you think back to that one very special teacher in your life that made a difference? The one who maybe took a little extra time to make sure you knew they cared? Or was just a wonderful teacher that touched your life?
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.

Dear Philip,
You are a young man of courage and convictions.
Thank You,
Bob Dole

Saturday, April 18, 2009

Guest Blogger..

I had the honor of being a guest blogger over at Jamie's Blog..

Go visit her blog and come back and tell me what you think of my wild crazy yet wonderful story ...

Friday, April 17, 2009

She Is Doing It Again..Woo Hoo

Yep...and if you want to join you better hurry..cause she is known for a great swap and it fills up fast.
I am really excited to be participating in Mamarazzi's Favorite Things Swap.

Philip Update

I would love to give a good update but I do not have one. This are bad. In fact things are worse then I thought they would be. The weaning off this medication is awful for him. He is in a lot of pain, sick and having seizures and awful cluster headaches.

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..
Philip Briggs
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.

Thursday, April 16, 2009

Philip's Story..Part Five

If you are new to my blog ..
Take a minute to read from the start of Philip's story. I hope you will enjoy watching what miracle God has shown in Philip's life before he was even born.
One thing that has surprised me while doing these blog stories in the things I had forgotten and the things I had not . It is funny how the mind works. I guess a lot of it is what I would call protective mode. But sometimes that can be a bad thing. When you depend too much on that and then something happens..it can hurt even worse.

I had a bitter sweet moment last week . I had my computer open and Jim my DH was reading my blog. All of the sudden he got this look on his face and he got choked up. He said..I had forgotten these few weeks when Philip was not sick and he shut the computer. Jim looked really sad. It surprised me that he was sad reading it vs happy. But then the more I thought about it. I do not think he was sad...I think it is just hard to see where we were and how thing were and could of been for Philip..and how hard they are right now. It is a part of his life that is bitter sweet. I miss those days....but I am sure glad we have these days with Philip. As I say daily. We are so very blessed.

Earlier in this post I said how it was odd about remember things. I can remember the first time Philip got sick. He threw up on my birthday. We were all dressed and ready to go . He got really sick and no matter what I did he could not keep any of his breast milk down that night.

I can remember it was a really rough night and he was just really not happy.

Thinking back it makes me sad to think he was in pain and I did not know it. I did call the DR like all new moms do and they gave me the pep talk that they give all new moms.

This is a night that really stands out in my mind. This night I stayed at my friend Jills's House. We both had babies the same age . Our DH went night fishing and we decided to do a sleep over. Jill may not remember this but Philip threw up again and was up crying for hours that night. Jill rocked him for hrs so I could sleep. Something that stands out in my mind is..she spent forever trying different blankets to wrap him in. She thought maybe if he was swaddled he would feel better. For some reason this many years later that sticks in my mind..that something was so wrong and all I thought was ...a swaddle would fix it.
The next day I took Philip to the pediatrician and explained to him what was going on. I was told Philip has a virus and to try to give him some pedilite and some gas drops. I left the Dr office feeling sort of like a bad mom because here was my 2 week old baby who was already sick. We moms blame ourselves, don't we.
So as the days went on Philip continued to get worse and no matter what I did he did not get well. Off to the DR we went and this time I was told he still had a virus but he also had reflux. So I was told the things to do to help with that. I did made sure I did each of them.
Two days later I took Cole to Sears to look for Jim his first Fathers Day Gift. Philip threw up the whole time and screamed the whole time we were gone. The thing that was odd to me was..it was not a unhappy spoiled baby cry it was a high pictched screaming cry. I left in tears and went home.
A moment I will never forget. I had Philip laying on my bed and I was putting away clean laundry. All of the sudden he started to scream and his stomache did that heaving it does when you know they are going to throw up..and without thinking I moved to the side and he prtojectle throw up so hard it hit the wall across the room.
That minute I became a new mom. I called the DR and said Philip is sick. He started to tell me this and that. He said I can see him on Monday. I said NO. I said He is really sick and either you will see him now or I will find a new DR. He said take him to the ER and I will have him checked out. And then he said but you know babies spit up ...
My next entry will start the hospital post...

Wednesday, April 15, 2009

Wordless Wednesday ( Almost)

This is what I miss with Philip...To hold him and rock him and tell him it all will be okay. That he will be okay...
God knows my heart . I tell him often. I pray Philip will have a better day today.

If I Ever Had A Doubt...

I just do not know what to say. I posted in in the middle of the night...and within minutes I had comments filled with love hope and prayers. I log on and within a few hours I have almost 20 people who took time out from their life to care enough about me to reach out to me.
I know I say thank you often..and I mean it. But thank you does not say it all. Do you have any idea how it makes me feel to know that anytime day or night there is someone who is around who cares ..and will lift me up in prayer ? What a blessing that is to me in my life. I am so very blessed by each of you. Thank you so much.
What a lesson this is for me and maybe each of you. I know now that a few kind words and reaching out can mean so much to someone. I plan to pay this kindness forward.
God is Good and I am Blessed.

Sunday, April 12, 2009

What A Beautiful Day..Happy Easter

Happy Easter....

This morning I had the most wonderful blessing. I went to Sunrise service on the beach at the top of our street. Standing at the beach I could not help but think of all the blessings in my life. There I am standing at the beach with thousands of other people celebrating the wonderful news that He Has Risen. How special that a group of people from all different faiths can gather at a place that in itself should prove to any doubted there is a GOD and pray for one common reason..To Celebrate Easter.
Sundays are a hard day for me and to be honest I really did not want to get up for sunrise service. But it is something that Emily and I love to do and I feel like I have disappointed her way too much these past few months. So when that alarm went off...off we went. Then I came home and slept till noon . My prayer for today is to feel well enough to enjoy Easter with our family. I have to say our last few holidays have been really hard with my surgeries and treatments.
I am so happy I went to the service. We only got to stay for half of it. But it felt really good that we got to even go. It was just beautiful at the beach. I watched in awe as God painted the skies with beautiful reminders of his beauty. I wanted share some pictures I took with my cell phone.

Saturday, April 11, 2009

Party to help Philip...

Most of you know that Philip is having a major operating in a few weeks. I posted the details HERE. Please take a minute to read the details of his surgery so you will know just how important prayers are right now for Philip.
A few weeks ago I met Brandy online and found out what a wonderful lady she is. She sent me a product that she sells to try out and I am hooked. It is my favorite thing in my house right now. It could become my new addiction.
Our family has been offered a very special opportunity by Brandy. Please read her message below for the details.
If any of my followers are lead to post this or link this on their blog I would appreciate it. As always thank you for praying for Philip and our family.
In everything give thanks; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:18" I have been so blessed to have come across Amy in my blog readings. We have never met personally however, given that we are all children of a mighty God, I feel some closeness to her and her family. I pray daily for each and every one of them and their daily struggles. Amy and I have gotten together and are very excited about doing this SCENTSY benefit party for Phillip. Some of you may ask "What is Scentsy?"Well here is your answer - Scentsy Wickless Candles are highly scented bars of wax that melt at a very low temperature over a 25 watt light bulb in exclusive electric warmers. Becasue they use no open flame like a standard scented candle, they pose no danger to children, pets, or property when used properly. Scentsy candles are leadless, wickless, flameless, and smokeless, and are available in over 80 exclusive scents. Please see my website(www.scentsy.com/bpainter) for more details and to place an order. You can also find my email and cell phone number in case you have ANY questions at all. If you are interested in hosting a party yourself or becoming a consultant, I would love to talk to you!To place an order that will benefit the Briggs Family, visit my website (www.scentsy.com/bpainter) and click MY EVENT. You will then see Philip Briggs Benefit. Click on Philip's Name and your order will go toward this benefit. Once you have placed your order, you can pay with a credit card and have it shipped directly to you. Amy and I discussed setting this party up to end so the products should be delivered in time for Mother's day. I will be donating back all of my commissions on each and every sale for the run of this party.Please feel free to contact me for any questions/concerns!!! Thanks so much to you all and May God Bless You!!!Brandy Painter_________________________________________________________________________________________________

I am so excited to invite all of you to Philip's online Medical Fundraising Party. I wish we could all get together and hang out for a "real" party. Maybe one day.
I hope you will take a minute to go over and look at Brandy's site. I promise you not be disappointed.

And most important..what we need most is prayers.

Thursday, April 9, 2009

Our Long Road Ahead....Important Medical Post

This is my son Philip. This picture was taken not too long ago after one of his last brain operations. Philip has had over 17 brain operations , suffered a stroke, had over 25 orthopedic operations, suffers from slit ventricle syndrome, chronic headaches, Has multiple shunts, suffers from seizures and many other medical issues. We have been blessed that with all these medical issues Philip pushes himself to live as normal of a life as possible.
One day about 8 months ago Philip started to complain of left side pain. This was something new and something VERY scary. Philip suffered a stroke on his RIGHT side in the middle of his second brain operation at 6 months old. This operation lasted 17 hours and he coded twice on the table. It was a miracle he lived. Philip has depended on his left due to the damage to his right side. The new pain in his left side was something that worried us and the Doctors.
After months of DR appt, MRI, Cat Scans, Spinal Taps, Blood Work...it was decided that he is suffering from a degenerative central nerve disorder on his left side. He has already experienced weakness and lost of function in both his left arm and left leg. With the stroke and the multiple bone and muscle operations on the right side, this has left Philip is a really difficult place. Philip also has experienced severe burning and shaking with non stop pain. He has been seeing a specialist for almost 5 months now and tried many different medications. Including some pain patches, Extended Morphine, percecott, new seizures medications to try to help with the shaking , surgical epidural Morphone bolus directly into the spine. The list goes on and on.
A option we had considered was a deep brain stimulator. But after finding that Philip has a syrnix which is a problem with his fluid by his brain and cord that will require surgery if it grows in..the Dr felt this would not be a good option. It was also decided Philip's nerves in the brain were noted on the EEG to be slower on the Right side and that means with seizures he would not be a good candidate for this procedure.
So here we are months later and decisions have been made. The DR has spoken to the Neuro and the Neuro surgeon and the decision was made to do the more complex operation. The risk associated with this operation are many. But after many appt, alot of research, tons of 2 am sleepless nights and non stop prayer. The answer seems that this is what is the best chance for Philip.
A few medical facts....Philip will be having a operation in a few weeks. He will be having a machine and a pump put in. The pump and machine will go in his stomach. They will have a Cather and wires worked through his spinal cord and directed into his brain.
A few thing makes this more complex for Philip. The pump and machine In the stomach....Philip has had major abdominal surgery nuemours times in his life. He now has a shunt that runs down into his left side and drains into his stomach. The Cather of that shunt is on the left side. He has a large area of scar tissue on the right side due to a previous shunt on the right side that got infected and had to removed in a emergency operation. So there is a concern with getting the pump and machine in the stomach.
The Cather and wires in the spine. Philip has had multiple spinal operations. Including a LP shunt that was in his spine. When that shunt had to be removed the tip broke off and Philip had a pretty complex operation on his spine. So there is a concern for the pathway in the spine up to the brain. Due to this Philip will need to be woken up during the operation and asked some questions to make sure he can feel his arms and legs as they move up the spine. This is what scares Philip . The DR said Philip would need to shake his head do to the tubes and machines. I think Philip has worried most about this. I just can not imagine what is going through his mind.
A big worry is the extra fluid that the pump will put in the brain. There is a concern that the extra fluid from the meds in the pump could be too much for Philip's brain to handle. One factor that may help or hurt is he has slit ventricle syndrome and his shunt is set as high as it will go. So we will just have to see how the brain will react to the extra fluid. Only time will tell us the answer to that.
One last concern is...Philip does have shunts. When you have shunts you always have to worry about infections. Philip already has a issue with some immune due to a major shunt infection that almost killed him last year. The infection started in the shunt in the stomach and traveled into the brain. When you have a infection with a shunt you have to take out all foreign object...aka the shunt..and have a external shunt outside the body ..and weeks in the ICU. One added issue which is a BIG one is Philip has a old piece of a shunt that is stuck in scar tissue in his brain . This is embedded by the mass in the brain. The last shunt infection the DR said he was not sure Philip would survive a operation getting that shunt tube out of the brain stem area by the mass. It is embedded with blood vessels and is a very vascular area. He did tell us that IF Philip ever has a second infection we would have no choice but to remove the old shunt tube. This is the same DR that attempted to do it when he was younger. He told me that one day he might have to play miracle worker but not that day.
So by adding the extra foreign objects the risk of infection is very high .And if there was a infection it would mean everything would need to come out..even in the brain stem. In this picture of his MRI scan you can see the white line in the middle of the brain mass. This is the tip of the broken off shunt tube I am explaining about.
Due to this risk Philip will be required to be very careful with germ and his immune system.
Philip has two big appts and procedures before his operation. His operation is scheduled for May 12th. The Dr needs him to be weened off all his meds before then including some of his seizure meds. This is a long hard process for Philip and already is causing his problems. There is no way around this ...the operation can not be done with these medications in his body.
Philip will also have to wear a body back brace for 8 weeks after his operation to protect his back and spine. He will not be able to bend, lift , or turn.
Two things that are being addressed with the insurance company now...Philip is going to need some rehab to help with his weakness. This could be in patient and not local.
Philip also is going to be evaluated at a out of state hospital within the next few months. There are issues with his shunt, a brain mass with a broken off piece of shunt, seizures, reflux kidney issues that may require a transplant one day...but top of the list is the degenerative nerve disorder that is trying to rob him of his left side . We are looking at NC ( Duke) NY ( Sloan) Mayo Clinic. Medical recorded and scans are being sent to each center.
Many have asked what they can do to help. First and most important is to pray for Philip and his recovery. Without prayer we would be lost. I can not begin to tell you how much your prayers and support mean to our family.
Needless to say Philip's medical bills are far beyond what we can pay right now. With my medical issues and Jim'sjob worries. I am just so thankful we have insurance. But even with insurance our cost are far above our resources. Many of you have asked where you can send small donations to help. After praying about this and swallowing some pride. I have added a donation button to the side of my blog. Any money donated will be used for Philip medical fund only.
Once again..Please know our first need from anyone is prayer for Philip and strength for our family.

Ask and Answer...Part Two

If you have not read Part One . Please take a minute to go back and read I answered a few good questions on that blog post.

Lori's question was :My question to you is how do you do it???? You seem so together and strong. I think I would just break and not want to go on! I admire you for that!Lori

Oh Lori...I sure have you fooled. Ha. I feel like a whinny mess. Thank you for the great question and the sweet comment. To answer your question "how do I do it". Well I use to get asked that a lot with Philip's brain surgeries and stroke. And one day I just figured out that I really did not have a choice. I think in the tough times or crisis you just go in over drive mode. That is what I have been doing. Some days I feel like a complete failure and like I am falling apart. But in the end I hope that I show that I am just a mom and a wife who is trying the very best she can. I do not always do it perfect or pretty. But I am NOT giving up. Thank you for your great support Lori.

Amy asked: How does your husband Jim deal with the stress of having a sick son and a sick wife? DO the extra responsibilities weigh on him?
Great question Amy. One thing about me in my blog is I am blunt. I sort of just say it like it is. So the truth is...we are struggling some. We are going through a lot of stages ..and it is starting to take a toll on our relationship. I have always been the one that has taken the "blunt" of Philip's medical issues. Not that it was planned that way...it just worked out that way. I had to stop working and stay with him after his brain brain operation and strokes. So I was the hands on parent while Jim worked. Jim is use to me being strong and pushing through things no matter what. I just can not push through lately. He understands I am sick. And he is worried. But I think when he sees me struggle it reminds him that I am not well. One thing he mentions often is..it bothers him to see me sleep so much on the weekends. He says it just shows him how tired I get. He knows in 21 years of marriage I am not a nap gal.
You know ..something happen last week that reminded me that while we think we "know" our spouses and how they feel..we can still get surprised. Jim was reading my blog about Philip when he was a baby. He got very emotional and said he had almost forgotten those days. I think like myself ..we are just finding our way...day by day.
The stress of Jim's job is non stop. It is no secret that he is in jeopardy of losing his job any day now...after working for the same company for 18 year. Everyday he comes home worried and leaves for work worried. I so wish I could do something to help him feel better.

I hope you will contuine to ask questions. Not only are they fun to answer..they have made me really stop and think.

Anyone intrested in?

I had posted these in the past and I thought they were sold but the lady never mailed the money...so...Here I am again...

Anyone Wii?
I have a few sealed Wii games I am going to sell...If you want a package deal..let me know. I thought I would ask here vs Ebay. I am going to put this money towwars some medical bills.

Sonic Riders..Zero CRRUITY
Sega Superstars...Tennis
Sonic...and the Secret Rings
AMF Bowling Pinbusters
Speed Racer
Wii Play
DragonBallZ..Budokai Tenkaichi 3

Tell Me He Did Not Say That...

See how sweet he looks? So cute and I just want to kiss his whole face. UNTIL today. This sweet cute child embarrassed me so bad today. As serious as can be..he clearly looks at Chad..who was doing some final touch ups from the work he did when we had the kitchen/ drain work done...He lays his head back on me and said my mommy has JELLO BOOBIES.
Chads eyes got big and my mouth flew open..I said what did you say... remind me to not do that again...and she says...you have jello boobies..watermelon jello boobies.
Chad got so tickled he had to leave the kitchen.
I swear he is going to pay for this..when he is old enough to know what he is paying for.

My PET Scan ....from Emily's view.

Yesterday I had my PET scan. This is my second one. And the first time Emily was with me for my appointment. She really wanted to go and I thought it might be good for her to be with me . But I will share that when we were there she got a really bad attitude and was just being sort of nasty. I finally looked at her and said what in the world is wrong with you...Why are you acting this way. She said..This makes everything more real for me. It was really sad and I just did not have a quick fix for her. So we decided to make it as "fun" as a PET can be.
Emily took some pictures and we decided to share them with you.
So here is my PET from Emily's view..

Here The Dr is seeing what access they can use..

And here I am waiting. Doing some serious thinking.

Emily really liked this one..She stayed in a separate room after my injection. So when I was done she wanted a picture with it showing I was what she called Radioactive.

Hope you enjoyed "Emily's View" for my PET scan.

Wednesday, April 8, 2009

Answers to some questions..

This week I posted Ask and I will Answer.
I have gotten some great questions . Many of you emailed me the questions and I will also answer them here.
I think I will continue to do this each week for a while...so keep asking and I will keep answering.

1. It was a honor to have Meaghan visit my blog. I have followed this brave lady long before I had any idea I had any medical issues. In fact she had offered to send me some samples of a fruit drink for Philip to try after one of his operations.
Meaghan has asked me if I would be willing to post my story on her blog. I emailed her and told her I would love to . She has been a inspiration to me for so long. I feel honored she asked me. I will let you know when he gets it posted.

2. Mari who has been so supportive while I have been dealing with my medical issues said she has been following me and wanted to know where my cancer is. Mari , I know it is hard to jump in the middle and not know the details. In a few days Meaghan will have my story posted on her blog and that will help explain some of the details. But in short ...I had two lumps in my neck that were removed and found to be cancer. While doing some testing it was found that I have some nodules on my chest wall..and also two masses in my right breast. Here is a post I wrote a while ago with some details. I will let you know when my story is up...and please ask me any questions you have about my story. I am new to all of this and to be honest I am still learning the ends and out also. Thank you so much for following my story.

Amy and Lori asked me two questions that I am going to answer in a separate blog post. They asked some great questions and I want to share with you tomorrow my answers.

If anyone else has any questions..Please feel free to ask.

Ask and I will Answer..

I have already gotten some great questions. Tomorrow I will start answering them.
As many of you know I started my blog to have a place to come talk about boring daily events. Ha. You know that made you laugh...
Not long after I started my blog I had surgery for a pre cancerous mass and had my first operation. Then the big operations and the diagnosis. Never in a million years did I have any idea what a turn my life and this blog would take.
Then Philip's issues became more complicated.
And as life has it way with us..I shared with each of you.
With that being said..I am working hard to start at the beginning of Philip's story and hope each of you will join in reading to learn more about him ...and well to enjoy seeing how God has worked in our life .
I know many of you have questions and I usually email you back with the answers.
I had a idea...scary huh?
I am going to ask each of you who have questions about anything dealing with ..well ME or US. Ask and I will answer. That is scary to say..lol
I have a feeling with some of the great questions I get sometimes...maybe others wonder the same thing...so let's ask and answer here.
So ask away...and I will do my best to answer...
Ask about me, Philip...my other adorable kids...my DH..where we live..how we live..what we eat..what we do...and what we hope to happen. Ya know..ask it all..
I will answer a few each day.
Anyone wanna go first? If you do not have a blog...but read..you can email me the question..and I will answer here.

Beautiful necklace giveaway

I saw this beautiful necklace on a giveaway. Go take a look. The saying on this necklace says it all..

Live the life you love.
Love the life you live.

Tuesday, April 7, 2009

Ask and I will Answer...

As many of you know I started my blog to have a place to come talk about boring daily events. Ha. You know that made you laugh...
Not long after I started my blog I had surgery for a pre cancerous mass and had my first operation. Then the big operations and the diagnosis. Never in a million years did I have any idea what a turn my life and this blog would take.
Then Philip's issues became more complicated.
And as life has it way with us..I shared with each of you.
With that being said..I am working hard to start at the beginning of Philip's story and hope each of you will join in reading to learn more about him ...and well to enjoy seeing how God has worked in our life .
I know many of you have questions and I usually email you back with the answers.
I had a idea...scary huh?
I am going to ask each of you who have questions about anything dealing with ..well ME or US. Ask and I will answer. That is scary to say..lol
I have a feeling with some of the great questions I get sometimes...maybe others wonder the same thing...so let's ask and answer here.
So ask away...and I will do my best to answer...
Ask about me, Philip...my other adorable kids...my DH..where we live..how we live..what we eat..what we do...and what we hope to happen. Ya know..ask it all..
I will answer a few each day.
Anyone wanna go first? If you do not have a blog...but read..you can email me the question..and I will answer here.

Philip's Story..Part Four

Take a minute to read from the start of Philip's story. I hope you will enjoy getting to see what miracle God has shown in Philip's life before he was even born.
Original post, Part One, Part two, Part three.

This is will be the last part of Philip's story before we figured out he was sick . In so many ways it is sad to think we only have three weeks or stories and pictures to share before our son's life changed so drastically. But as I have said before. I feel so blessed that we had those three weeks. We did not know any thing was wrong. And we were the parents are a sweet healthy perfect baby boy.
One thing I am really thankful for is...the few pictures I have of him before he got sick. Back then we did not have the whole digital ..click and here they are luxury. And of course I had no reason to think we would not have a lifetime to get pictures of Philip at home, happy and healthy. So these pictures mean so much to me.
I am shocked by my emotions while doing this. Talk about some sweet and yet painful memories. I guess I did not realise that I had shoved some of those earlier days deep down. Why? I am not sure. Thank you for taking the time to go back with me in time.
As I continue to do this..I hope you will continue to follow me as I show nothing shy of a miracle ...God is GOOD and he has always protected Philip.
Tell me...how cute is that baby?
Can you tell I LOVE being a new mommy.
Shannon..not one word about my fluffy hair. I miss that hair. LOL

I have to laugh at this picture. Did I think he would roll off the blanket on the floor. I think this should be titled NEW MOMMY.

Monday, April 6, 2009

Here I sit..some thoughts..

Waiting for my meds to finish running for my PET and so many things on my mind. I am really tired today yet I feel a nervous feeling in my gut. Lately so many things are going through my mind about Philip and his operation.
Tonight I am going to share with you what the surgeon has told us, what we have decided, the risk, the benefits and my fears and my hopes.
I know that I am not alone. I want to be strong. I want to be that person that many of you comment about...The one you say is so strong. But wanna know a secret? I am minutes away from my PET scan and what I want to do is rip the IV out and leave..Pack my family up and run away. Run away from all of it. But I know it will follow us. When Philip was little I use to day dream about he and I running away to a island...just he and I. I would protect him and we would just forget about everything and everyone. I think back to those thoughts and wonder if I was on drugs..How naive I was during those moments. Maybe I need some of those meds now..Huh?
Have I mentioned I hate feeling needy. But I really wanted to reach out to you..these few minutes before my scan. Just to share a little.
So many times on some hard days I come here and share and I leave feeling blessed and stronger.
Some of you may remember that the last time I had my PET a few months ago I was praying real hard and looked up and saw the name PHILIP's on the machine. I am going to get in this machine and pray and look at my PHILIP"S sign...a sign that all will be okay. There is a small part of me that thinks..Oh no what if this machine does not have that..I am in a different room. Is that a bad sign..How will I explain to this weird I mean nice tech that I need the other machine and the other person will have to switch with me. Okay Now that I shared my worry..see it is in the pretty writing..that is me sharing but not saying it. Do you get what I mean? I am feeling better now. Gosh it is good to share .
Okay they said it is time..so here we go...I am ready to get this done and over with and behind me. I am ready to move .
Please check back tonight for my post about Philip's upcoming operation.

Not Me Monday..

Please pray for Baby Stellan. He is sick and in the PICU with a heart issue they are trying to correct with medication. I pray that the Dr can find the right medication to help this sweet baby boy. I pray for peace for MckMama during this very difficult time.Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.
Sometimes being a mom and keeping a straight face can be hard. I did NOT laugh when Philip and Emily got into a BIG argument this week. When Philip said as serious as can be to listen to you Emily and how perfect you are... you might be the next Virgin Mary. I did NOT have a moment of OMG that was a great way to hush her up. And I sure did NOT look at her and wait to see what she would say back. And how rude would it be if I had said.wow that was too funny. I would NOT do that? But it sure did hush Emily right up.
I did NOT ask Cole where he learned to be so bossy and he sure did NOT put his hands on his hip and say from you mommy. That Child is very confused. Ha
Cole did NOT say to me this weekend that he thought he might throw up. Emily did NOT tell him he was fine and maybe car sick. As I tried to hand Emily a bag for Cole., the one she was so sure she did NOT need. Cole did NOT throw up all over Emily from head to toe. I so did NOT gag to not throw up..cause you know me and being sick on weekend. And I so did NOT laugh so hard because Emily was sitting there with Cole Tre puke all over her..and he said as sweet as can be. Wow I feel better. Can we go to the park. I think Emily might learn to listen when the little mean says he might throw up.
I did NOT give in and watch Marley and Me this weekend . I did NOT then cry for a hour after it ended. I am NOT thinking I may be having some type of emotional breakdown. But this is a form of thearpy. Right?
I Cole did NOT ask me who shot me and when I asked him what he meant he did NOT point to a zit I have. Has he not learned the rule. Do NOT ask such things?
I am NOT a tad anxious about my PET today. I am NOT thinking about it non stop. I know I will not be alone. God is with me and many of you have promised to keep me in your thoughts. You do remember that, right?
I am NOT adding a emergency dentist appt to my busy day today for miss Emily. I did NOT have to call our peds dentist Sat night. I am dreading what he may have to do today. I did NOT have to remind myself as I thought about how we would get everything done today..to be thankful this is a normal crappy thing..not a BIG deal. Please pray it is not going to be a big deal. Ok?
Okay I am NOT here doing this so maybe we may be late and not been seen today. Nah..I know we have to go...soooo
I am NOT going to be back later. Wink Wink.

Sunday, April 5, 2009

My favorite Things.

Sassy and the Boys is having a giveaway. Okay yes I know...yes..I said I know. I enter. I blog. I do not win. LEAVE me alone. I am a mess. Did you see my picture? Be glad I am bloging giveaways and not drinking.

Scroll down and see some of my favorite things.

Now this giveaway has a little extra step...I have to post some of my favorite things.

I do not think I need to even explain..now do I?

Trapp Candles. I LOVE these candles and I NEVER buy them for myself. I have had one 7 ounce one forever that I never burn anymore cause it is almost GONE. I Love the scent...Jasmine Gardenia and Tropical Isle. The most awesome candle ever.

Clinique..Aromatics Elixir Okay I LOVE this. It is my all time favorite. I ONLY use it for VERY special ocassions or ocassions where I need to feel special. I have a few sprays left so I am trying really hard to pick and choose occassions. I am planning to use a spray for my PET scan ...cause well you know..and for Philip's operation. And well maybe a spray or two for some sweet talkin with my DH.


Actually I love the frozen drinks there..but I will take any I can get. Ha

Sonner then later...I will win..Giveaway..

Okay I know you are thinking...she never wins...and I agree. I have a question. Are any of you winning and not telling me cause ya do not wanna follow the rules of we share?
Come on..cause it will be worse if I find out later..
So here is something I wanna win. If I do not..you know the rules. I am thinking April can win and we can share cause of the A thing...oh and Amber too..right?


Philip's Story..Part Three

If you missed my original post about posting Philip's story you can read HERE.

Philip's story Part One..Here
Philip's story Part Two..Here

Before I move on to the part where Philip goes into the hospital I wanted to post a few more pictures and stories about Philip from the first few weeks at home. There will be plenty of hospital and medical post. I really NEED to focus on these for a few more post. Will you join me in taking a look at the earlier days of Philip's life when he was healthy ? Before all the medical drama and worry.
In a lot of ways I had forgotten some of these times. While they were very special I have to admit they did get over shadowed by the medical memories. So see this has already been so good for me. I LOVE looking at how sweet and beautiful he is in these pictures. I know every mom thinks their baby is perfect . But I just knew he was the most beautiful baby that ever had been born at that hospital. Okay ..I am just saying..look at the pictures..
I wanted to share a few cute PG things. I went into pre term labor at 3 weeks and a few days. The Dr had me come into the hospital and drink this paregoric stuff. So I wanted to have Philip right then. So I tell Jim to drink it. He tells me heck no..so I say to him..It will make you high..LMBO. Like I thought that would work. he still did not drink it. Oh well. Two days later I am feeling contractions and thinking crud..here comes the paregoric again. I call the DR and he says. Come to the hospital and if you are dilated we will keep you. So I decide to go tell my mom..I was at her house. So as she was in the bathtub washing her hair I say Mom the Dr wants to see me at the hospital in 20 minutes. She says thanks for waiting till I am washing my hair. But in my mind I am sure I am drinking the paregoric. So off we go to the hospital. Mom makes me drive cause she is stressed. Ha..of course she is. She does not have power steering and I am big and PG but hey I will drive.
We get to the hospital and Woo Hoo I am going to be kept..He is going to add some poticin and we will have a baby...Easy ..huh? Oh crap where is Jim? We should find Jim...So we wait for him to get home from school and he gets a call from his mom..and well...he freaks a little. He says tell that Dr to make her drink that stuff that she says makes you high. We are not ready. Ha..hush Jim..
Jim comes and we settle down..we are going to have a baby..I watch every single contraction. The nurse says..you might want to get some sleep it is going to be a LONG night. Oh please lady I am having a baby. I know what I am doing. Oh dear God I did not know what I was doing. My mom told Jim to go down stairs to eat and she would hang out with me. The DR came in and broke my water and all hell broke lose. poor Jim came in and he had no idea where his wife had gone. I begged for the meds that made the contractions go away..the paregoric ..you know the get ya high meds. and I would go home and rest for a while and come back..NO NO NO. Ok Then I wanted a epidural. But could I get one NO. cause back then you had to go to some class to have one..I did not go to the class..I was early and well I knew I would not need one. I was going to breathe...So I tell the nurse that my mom is there to go get her. Then I explain that my mom has her checkbook and will write a check for whatever amount is needed for a epidural. NO NO NO. I am telling you back then they were not all let's give ya drugs to make ya feel so much better. I did get some staydol..and I needed more. So I get to 10 and I push and I push and I push for 4 1/2. No baby. The nurse would say..Oh I see hair...I would think yank him out by his hair. So finally we go for a csetion..
They come in and say...here is the paperwork for the epidural. I am thinking are you serious I did not take the freakin class..remember. You would not let me have one. NO CLASS NO epidural. But then a dang pushing contraction hit and they said no pushing till the OR. So instead of proving my point that I should of had the epidural without the class..I said here I signed give it to me NOW. Quick.
I was so glad to be awake cause I just know something will happen and I need to see him. If you remember I had 3 mc and I was sure I would never be a mom. So off we go..I was drugged up and as serious as can be..I look at my dr and I say..I am never going to forgive you for this. I meant to say I will never forget this...he still laughs about that. Then my epidural did not work on one side and on and on and on...So I say where is Jim. Tell him to come in. I swear to this day they said He is drinking a coke and reading the newspaper resting he is tired. I was livid ...But they swear they said he is right outside the room. I know what I heard ...who do you believe?
That was at 11:20 PM April 19th on a Thursday. The Day I was blessed to be a mommy.
The sweetest memory I have from that whole night was. The nurse was wheeling me to my room and she said someone wants to tell you goodnight.
She brought Philip out and she said...Meet your baby ...You are a mommy now. I remember that like it was yesterday. God sure did bless Jim and I that day.

I want to thank each of you who are following me on this journey of Philip's story. I have spent time thinking and praying about things from the earlier days that I had pushed down deep. I needed this. And It is so nice to share it with my special friend..each of you.

Saturday, April 4, 2009

Does This Look Like A Face That?

Does This Look Like A Face That Wants To Watch The Movie Marley And Me?

See I have heard about this movie...sweet cute movie... But let me just tell you that my emotions are RAW this weekend. I am sick..I mean really sick. I have cried and cried and well cried. Everything has caught up with me. And I am just going to say it. You who say I am strong..Ha...No I am not. Not this weekend.

And I heard that while this movie is all sweet and loving it has a a "ending" that may just put me over the edge. It will not take much.

So I say I am sorry I just need to lay down and not watch the movie. Mommy is sick and can not watch the movie. Sometimes mommy just has to say no. yep...No to the movie ...

So Cole comes over and says Mommy can we Please watch Marley...

So now I am watching Marley.

I guess I need to just say this...I am struggling. I have faith. I have trust in God. I am still struggling. I am not feeling well. I am tired of dumping on you that I am not feeling well. I have a paranoid feeling everyone I know and live with is tired of me not feeling well. Philip's medical issues are so complex and scary it takes my breathe away. And on top of having to watch him live through it we are trying to schedule it, get it approved and pay for it.

Okay I am done now...Really I am..

Back to watching Marley and Me with the best medicine of all..My sweet Cole Tre.

Friday, April 3, 2009

Philip's Story ..Part Two

If you missed Part One here it is.
On April 19th I became the luckiest women in the world. After 27 hours of labor and 4 hours of pushing and a csection I had the most beautiful little boy. Philip was born three weeks early and weighed 7'12 and was 21 inches long. Philip seemed to be healthy and we were able to go home after 4 days when I was released from the hospital. We went home and did the silly things a parent does. And yes I have pictures. Gosh he was a beautiful baby.
My first time changing his diaper at home. Just the little things mean so much now looking back. I had no idea that was all about to change in a matter of days.
I am so glad I did not know he was so sick in the first days of his life. To be honest I look at these pictures and it is hard for me. I get this feeling of...How is the world did this little baby boy who looked so perfect get so sick and end up with over 16 brain operations, strokes and on and on. So for now..I will focus on...how sweet and precious he is. My sweet baby boy. Perfect in every way. Then and Always.

Friday Afternoon Phone call...

I got a phone call from the surgeon's office...Soooo..
I am dragging myself out of bed...I have been YUCK since yesterday. I have to just say that I am not doing good with feeling so sick. When we got home yesterday I laid in bed and could not move...Not real sure why everything is harder this past week but it is...

Wanted to let you know that Philip is going to have a procedure this afternoon. There was a issue found yesterday at his appt for his upcoming operation. The Dr office called today and after looking at his blood work and scans this needs to be dealt with right away. So late this afternoon Philip will have this procedure.

Later this afternoon I plan to blog about our appt yesterday. I want to share with all of you what the plan is. You all have stood behind us and now Philip needs you more then ever.

Also I am going to do the next part of his story...and I have to say the baby picture is so cute...ahhhh...

Okay...if you saw me you would say Amy get up and do something to yourself you look rough...and I would say..you are right...so I am up..

Hugs my friends..

Thursday, April 2, 2009

Fresh Start Tomorrow

Trust in the LORD with all your heart and lean not on your own understanding;in all your ways acknowledge him,and he will direct your paths.
Proverbs 3, 5-6

Today has been such a long hard day. I have been sick all day . Every minute that I have not been in a DR appt I have been in bed sick. And as if it matter I just wanna add there is no time for that right now.

Tomorrow I am going to share the details of Philip's appt from today. I just do not have the emotional energy tonight. I have to admit that I am discouraged. More discouraged then I have been in a really long time. So I searched and found the verse above. It speaks what I need to hear. The appt today was filled with information that was scary and hard for Philip and I to hear. He has said many times today...This is going to be a hard scary operation...and after the appt today...he is right.

I need to get well because we have a LONG road ahead of us.

I just would like to ask that you pray for some peace for Philip tonight. I know he is scared. In so many ways he is still so young and this is such a BIG step. To listen to the odds and details today was almost too much for me..so I know it was for him.

I have taken all the meds I can to help with my sickness today and it is not going to let up. I am going to repeat that verse over and over in my head and I got to sleep and pray for a better day tomorrow.

Yes another giveaway..let's try to win..

I think WE should win some awesome candles from this giveaway..

Wednesday, April 1, 2009

Odds and Ends...

I have a new look...
Emily helped me with my hair today. It has been a mess. It is coming out and very thin in areas...Lately when I wash it there seems to be a sink filled. And now It is just everywhere ...so this is a good way to keep it all in one place..and just covered and let me forget about it ...for a while. I think reality hit last week when I gave Jim a hug and turned around and a big chunk of my hair was stuck to his face where he had not shaved yet. Oh well..it could be worse. Emily seemed to LOVE helping me with this today.

I have a PET scan next week. This is a BIG test for me. And we will be making BIG decisions based on these test results. I am anxious to see what the neck nodes are doing. But also what the nodules on the chest wall. I think these worry me the most. I then will have a Chest CT a few weeks later. And my Breast MRI the end of May.

Today Philip had a important appt that was required for his next step of his operation. It was a long day but it is done.

Tomorrow is a VERY important day for Philip. We see the surgeon tomorrow to make plans for the next stage. It is never a easy appt. I always dread hearing the details of brain and spine and extra fluids in the brain...I know we need to know it..and we do know it..But I still hare heaving to hear it every appt. It is just hard some days.

Tomorrow is Thursday...and that is my day for my treatment.

So tomorrow will be very busy...But I am sure it will be a good day..

Wordless Wednesday ( Almost)

Mommy I dressed myself..

Look I have Big Muscles

Why will Emily not let me go out and play with her and all her girly friends?