Just For Today..

Not a lot of time..we are in middle of a big medical day for Philip..

After having a very hard night of him throwing up , falling, sezuires...and lot's of tears...


I figured out I have two choices..To fall apart...or

No matter how hard today is..God blessed me with it..so I dry my tears and embrace it.  That is my goal..for today.

Sigh...

Today is just a hard day.  I really could use some prayers and a dose of patience. 

I am going to admit something ...I am just at my wits end.  I feel like I could crawl in a corner and not ever come out.  I am not strong or brave.  I just do what I need to do..and not very well. I do not make the best of each day..I just make it through the days.. Maybe this is just a pity party...maybe I really feel this way..today I am not sure of much...

As you know tomorrow is a busy day for Philip..I posted about it last night.  I also am having a aggressive treatment at the end of the week.  I spent all morning thinking of how to make this a good week for the kids..especially Cole.  Funny how excited I was earlier to know they made Atari plug in games ..simple things can make a mom happy..huh?

Well today has turned  really rough for Philip.  He fell earlier today.  Thank goodness someone was here to help him. We make sure someone is here at all times since he has been falling alot lately.

And a hour later he had a bad seizure.

One part of me just wants to sit and cry..the other part of me wants to yell to the top of my lungs..


I swear..I know God is in charge.  I know he has a plan.  I know he will be here  for us.  But today I feel very alone.

Yet I am not alone...I have a house filled with amazing kids..and no matter how much I want them to let me just BE ....it is not going to happen.  I might run away...

I bet some of you are just shaking your head thinking how awful I sound in this post.  Cause I feel pretty guilty that I feel this way.

Please pray for Philip.  He is my son.  He deserves to be healthy and happy.  And as his mom..I have to figure out how to help him achieve these things..

Sunday Chit And Chat

Just curious how everyone is doing this blessed Sunday? 

Did anyone do  any wonderful this weekend?

Got anything planned for this week?

I will be doing a treatment   late this week and they tell me it will be hard on me.  Since this is the first one of the new aggressive protocol I am not sure what to expect .  Time will tell..huh?

Last week was a very hard week for Philip...He will be having some test done this week and a procedure.  If you could keep him in your prayers .  His shunt and pump will need to be turned off for these testing..with the shunt being off it means the fluid builds really fast and he will have a few rougher days even after his shunt is reset. I always dread when it is test time and the machines in him need to be messed with.  But then again we need to know so we can get him some help. So Tuesday will be a hard day and we would so love to feel your prayers that day.

I also wanted to mention that Philip's birthday is in a few weeks...I have a feeling it will be a hard one for him for a number of reasons.  I am trying to think of some ideas to remind him just how special he is .  What a blessing from God the day he was born.  I get goose bumps when I think of just how wonderful it was to finally be a mommy..and God sure did bless us with the most amazing baby and young man.

I am going to log off..we are having awful weather ...the lights have gone out three times..and gosh forbid my computer gets fried...always protect the computer..huh?

Time To Pick A Name..

It is time to pick the name for the web page for my new bussiness...so as most of you know ..it will be a way for me to take every penny I make and put towrds medical bills...what a blessing that will be.

The product is called Skinny Dip...

And I want something trendy and hip..lol

So here are some ideas...ready..let me know your favorite or if you have a better one..

Skinny Dip?  We Got Ya Covered..

Fragrant Blessings

Amy's Aromas

diva delights...skinny dip candles

SKINNY DIVA

Skinny by Design

 

Philip Update.

First and more important...Philip could really use some prayers.  Things just are not going good for him right now.  He has been falling more often.  Dropping things with his left hand and has no use of his right arm and hand.
The specialist who would be helping us with this is out on a medical leave.  The Dr covering seems as confused and over whelmed as I am..and well..I just feel like I could scream..

As I am typing this I got a call back...from the director.  Philip will have a procedure tomorrow out of town to see if we can do something to help with his pain.. He can not contuine to sleep non stop and cry when he is awake. 

He is due for a surgery in begiing of April..so we will need to discuss that with them and see what is the best option.

I am really nervous about tomorrow for him..but so relieved that I spoke with someone who knew what to say and do to atleast get us going in the right direction..

God Is Good..He knew I was at my end..I came here to reach out.and the phone rang..

Please continue to pray for Philip and for safe travels tomorrow...

Help Me? Yes You..

I am getting ready to start my web page to sell my Skinny Dip Candles..
I need a catchy name..PLEASE HELP.


Wanna know why I need help...Here is Jim's suggestion..

Smells Like Amy...( it would be my luck tons of you sat next to a Amy that smelled Bad)

A friend said..Cure you stink..( ummm...thanks but no thanks)

Come on..you guys are hip..cool...and I am begging..So post me your ideas...

And guess what...There could be a gift involved ...yes that was a bribe..

Just a Real Hard Night..

I just do not know what to do...I swear my heart is going to break.  I love my son more then I could ever explain.  I have always tried to do my very very best to do the right thing by him.  I have prayed so hard ...over and over...I have tried my best to turn everything over to God.  I have worked on my faith.  I have even found myself sitting on the floor of a ICU begging for God to help us...I just feel broken tonight as a mom...
I heard Philip crying in the bathroom tonight.  He came out and my heart just broke.  His lip was shaking and he was in so much pain he could not control himself.  I sat down and talked with him.  He is just broken.  Physically and emotionally .  Listening to my son tonight made my heart break.  He is so discouraged with his life.
The hardest thing was trying to find a balance tonight with...It is going to be okay..when I am not sure it will be.  To I know how hard things are...to we have to be thankful for what we have. Wanna know something...I wanted to just put my hands over my head and scream and cry.  I do not know what to say..I do not know what to do..and I feel like a failure as a mom. 
The truth is...NO matter how much I pray..and depend on God..this hurts..deep hurt.  He is hurt.  I am hurt.  Our whole family is hurting.  And I know just because we have faith in God does not mean it makes it any easier...it just means we are not alone.  Yet tonight I feel alone.
I want my sweet son to be well.  I want to go back in time and try to make some change to something that happened to make this better.  I want to see a light in his eyes...I want I want I want so much more for my son. 
I just can not believe that things have gotten so out of control for Philip.  It seems that we went from a simple brain operation to another to 17 more .strokes on one side..weakness on the other....How did this all happen? No shunts to one to two shunts to three..and then pain pumps ...my goodness..I never would of thought this would happen to my son. I never let myself really think about the fact..this all started with the mass in the brain stem that we went in and removed..and here we are with it back..and in a place that last time they attempted to get there he had a stroke. The following time the Dr could not even get to it.  I feel like we are waiting on a ticking time bomb.  That mass is in a place that the Dr said is the most dangerous part of his brain..so many blood vessels ...he would bleed out. I think his words were damned if we do and damned if we don't.
I know it could be worse..but tonight it feels pretty awful. 
So I listened..I told him I was here..I told him I cared...and I told him that I know it is so hard but to please try to focus on the fact he is blessed..and then I gave him a very strong pain pill..that will work with his pain pump and night meds..and I so hope he sleeps.
And now it is 1 am and I feel like my heart is broken..It just seems that everything hut pretty darn hard tonight.
Somehow I have to try to make this better for Philip and our family.  I keep praying and I know God is listening.  I just have this incredible scared feeling.

I adore my swap partner..

I have to say that I was so spoiled by my swap buddy.  I swear it was as if she knew just what I needed. 

I love the package ...see how cute she did the mailing tags...they are made from the button from the blog..I went ahead and took off our mailing address...just in case a bad person wanted to come get us..lol

She picked out the perfect gifts for me..I LOVED the blanket.  It is the softest blanket that has ever been made..and thanks to Gwen it is mine..and as I tell my kids..ALL MINE.  It is perfect for when I am not feeling well after treatment.  I love it.
She also sent the cutest Grill apron and magazine.  It is getting to be the perfect weather for that...I love it.  She sent me a good book to read..and I plan to take it with me while at my many DR appts.  She sent me a wonderful book to help with my spirtuial needs..Thank you so much .  I also got a super cute veggies tray with a coupun for some dip...I am going to fill that up with fresh veggies and fruit.  Yummy.
Another thing she got me was some Bath and Body hand soap.  The funny thing is..I LOVE it.  I guess I am cheap I have never bought it for myself and now I am hooked. 
The one thing I love most about my swap gift is the hand written notes from Gwen.  I just could FEEL the support and kindness in her words.  As much as I love the whole gift box..I appericate her words and support most.  I kept the note cards and will read them on the harder days..
Thank you for the box and thank you for the awesome swap.

Just A Little Chit Chat

I have to admit I do not have a lot to say...I am just feeling a little lonely tonight and thought I would come here and say hello. It is almost funny that I say I feel lonely because our house is filled with beautiful children and my best friend and husband Jimmy.  Yet...I am feeling lonely in a different way.I think it has just been a long day...heck hasn't it been a long week?  Thank goodness tomorrow is Friday .

So I have been feeling a little bad for my family lately.  My husband leaves in the morning and I am laying in bed and he comes home and for day after day I am in the same place and I will admit in the same clothes.  How the heck did everything become so hard..the simple act of taking a bath...so today I swore by the end of the say I would not be in the same clothes...I took a bath and washed my hair...and you may want to sit down...I even changed into some sweats and a t shirt..The family did not say anything...I think they were in shock..haha.  I guess when the DR said we needed to go aggressive..they meant it..because it is kicking my butt..But guess what...I am going to win..I may not do it pretty..but I will get it done..

Philip has been having some medical issues . sleeping up to 20 hrs the last few days .he has been falling alot.  He fell today again.  I am not sure what is going on..but of course if I let myself go crazy..I could think of a million things..none of them good.  I did want to let you all know I updated is Caringbride page..the link is on the side bar..just click the pic..if you would like to visit his webpage.

I have to tell you ...the best medicine I have are my kids.  They are crazy and keep me laughing.  Cole has a list of words he is not allowed to say.  So the other day he said Freakin...weenie..I said Cole you are NOT allowed to say those words..He said I did NOT say them..Myself did.  He said Myself is 7 and he can say them.  So we had a long talk about fibbing..and he looked at me and said..Mama I will talk to Myself about fibbing..Oh my goodness..haha.

Tomorrow I am going to post the pic of my amazing swap package I got...I love every single thing I got..Thank you so much  Gwen.

Wordless Wednesday,,Almost

 Can ya tell he  lives in the house with a 13 year old sister?   He came out of the bathroom and said...I look like Edward...so cute...if you leave out the fact Edward is a vampire and well...that says enough..

He does look cute as can be..huh?  Love the messy hair..what ya think?

Speaking of Edward...anyone buying a certain movie that is being released the 20th?  I bet you know the one..lol

Spring Swap...

Spring is in the air...can you feel it ?  What better way to celebrate then join in on a Spring Swap.  Hurry because they fill up fast...

What Ya Doing This Weekend?

Just curious what you all were doing this weekend?  Anything really exciting...fun...dangerous..lol.

Have all of you heard of Sunny Florida?  I sure do miss it.  It has rained non stop...we might need a row boat to get to my Dr appt.  Cole's first TBALL game was canceled due to the field being under water.  And the poor spring breakers are walking around looking really pissy because this is NOT their idea of Sunny Spring Break.

I am dealing with the news of my medical update from last week. Actually I should say WE ...as in the family are working on dealing with the idea that things may take a little longer or be a little harder or not as clear as would like.  But we are very blessed that we found the masses to begin with .  We said in the beginning we would do whatever it took to make sure I was healthy and here with my family....and that is what we are doing.

I am so proud that Emily is doing Relay For Life...if anyone is intrested in donating..please email me..and I will make sure it goes towrads Emily's team.  amyb1569@cfl.rr.com

Philip has had some rough days.  He is due for a procedure with his pump in two weeks.  It is always a rough time for him.  I swear  he is the strongest person I know. I would fall apart with one brain operation and a stroke..and he is till trying to move forward after brain surgery number 19 and a stroke.  I wish I could bottle a little of his courage and strength.

Wondering if any of you are on Twiiter...if so let me know..I am amyb11569 on twitter.


I wondered if anyone would be interested in a AWESOME SPRING GIVEAWAY?  Would YOU?  If so comment and let me know, cause I have a idea. It make me some of you happy..

Gotta Love Little Brothers...

Cole has decided he LOVES to spy on Emily. Today he climbed in the tree to watch her come home from the bus stop...it was so cute..he has never been in the tree and she was so suprised to see him sitting there..Gotta love little brothers..

Dragonfly..

Dragonfly...I found this online and just really liked it..I wanted to share with each of you..

In the bottom of the pond lived some grubs who could not understand why none of their groups ever came back after crawling up the stems of the lilies to the top of the water. They promised each other that the next one who was called to make the upward climb would return and tell what happened to him. Soon, one of them felt an urgent impulse to seek the surface; he rested himself on the top of the lily pad and went through a glorious transformation which made him a dragonfly with beautiful wings. In vain he tried to keep his promise. Flying back and forth over the pond, he peered down at his friends below. Then he realized that even if they could see him they would not recognize such a radiant creature as one of their number. The fact that we cannot see our loved ones or communicate with them after the transformation, which we call death, is no proof that they cease to exist. Walter Dudley Cavert

Quick Update..

Many of you know I am recovering from surgery that I had on Tuesday.  Ouch.  Not that I am complaining but Cole has managed to bump my stomach more times this week then ever before. And he has also spent a lot of time cuddling with me..He gives the best cuddles.

I have been taking some time to reflect and mental figure out some news I got  earlier this week.  A year ago I  had surgery was given the  diagnosis of Cancer. The recovery has been long and in many ways and multiple operations..I am still recovering. During the testing some "surprises " were found.  When I was given my original treatment plan ..it was based on the pathology and was considered the best plan at the time.

Since my amazing daughter reads my blog...yes you Emily...I am going to just put the basic info in my update.
Without going into great detail and stats and odds ...I will just say that my original diagnosis was what they call a precursor to a more complicated aggressive form of my original cancer. As testing has been done and more "places" were found we knew that it was not as simple as we had hoped.

This week we have been figuring out what the best plan of action is..and now have what I  call my map...my mapping of treatment.

I will be starting a new protocol that will consist of Five drugs.  Four will be given thru the vein and one by mouth.   This protocol has a time span of 5 to 8 months months depending on how the body reacts and rebound between treatments.

A radiologic imaging test (PET/CT) is recommended, either six to eight weeks after finishing chemotherapy or twelve weeks after finishing radiation therapy.It will be considered a good response when..

•  They say I am  well,,I so look forward to that happening one day soon.
• They find  no evidence of disease or disease-related symptoms on history and physical examination.
• My spleen and liver cannot be felt during the physical examination.
• All post-treatment residual masses are negative on PET scan.This includes the nodules on my chest wall.
• My  bone marrow biopsy is negative.

I have to admit I am discouraged that things have gotten worse instead of better.I hate words like aggressive..and I feel like we are starting over again..BUT...it is what it is..yes?

So while things have gotten a little more aggressive..I am glad we are going to be aggressive. I mean what choice do we have?

Thank you all so much for your support..it has been a rough week ..worrying about all of this..

Do You Troll Or Pandora?

 Wanted to add that Troll has a special right now..If you buy a clasp you get the bracelet for free..sooo...go buy a clasp..ha

I got a Pandora bracelet for Mothers day last year.  I LOVE it.  I get a troll bead for each holiday.Much better then the stand by nick knack..lol  I have a mix and match bracelet.  There is a small shop that sells the Troll beads and I have to admit..If I win the lottery..after the medical and all that stuff..I would buy me some serious Troll beads..
Okay sorry..back to the story..I found out last week that Troll is doing a pretty cool thing.  They are releasing  some new beads today..and for every $25 bead $20 goes to the Haiti rebuild fund.  How cool is that..and the beads look beautiful..

So do you have a Troll or Pandora bracelet?

Empowerment Bead Collection Press Release – Trollbeads Canada

March 2nd, 2010 by admin No comments » “VAUGHAN, ON – February 26, 2010 – The Trendy Group and Trollbeads are pleased to
announce the release of the Haiti Empowerment bead collection, Beads of Hope. This
exclusive line of beads underscores Trollbeads’ commitment to charitable causes.
The initial offering of colourful, glass Haiti Empowerment beads will be released in early
March 2010. The Trendy Group, in partnership with Trollbeads Denmark, our retailers
and sales representatives, will donate $20 from every Haiti Empowerment bead purchase
to Habitat for Humanity Canada to support their Haiti relief efforts. Habitat for Humanity
Canada’s goal is to provide housing solutions to 50,000 low-income Haitian families over
the next five years.
In order to include all consumers in this worthy cause, Trollbeads has designed and
manufactured Empowerment beads to fit Trollbeads bracelets as well as similar beaded
bracelets. It is our hope that the beads’ message of love and support will strengthen all
those affected by this disaster.”
“Habitat for Humanity Canada is a national, non-profit organization working for a world
where everyone has a safe and decent place to live. The mission of the organization is to
mobilize volunteers and community partners in building affordable housing and
promoting homeownership as a means to breaking the cycle of poverty. Habitat for
Humanity Canada was founded in 1985, consists of over 50,000 volunteers and 73
affiliate organizations from coast to coast, and is a member of Habitat for Humanity
International which spans 93 countries, has built over 300,000 homes, and is now
building a new home every 10 minutes. For more information about Habitat for
Humanity Canada, visit www.habitat.ca”

Thirsty Thursday

This is my first time doing Thirsty Thursday..I found the idea from a wonderful new blog I am reading...Hop over and read a few Thirsty Thursday post..

For what seemed like forever I did a Low Carb diet.  I started over weighing 233 and met my goal of 136.  It was so hard giving up sugar...I had to learn a way around it to stay on plan and not get bored. Low Carb is not always easy but it can be done.  For example...my StarBucks LC drink...

I would do 5 pumps Sugar Free Hazelnut syrup
Half and Half
3 espresso shots...ice and blended.  Some days I would add a little whip cream...and guess what...It was awesome and I never felt deprived.

Hope you enjoyed my LC drink post...

Need A Little Help

Update... Thank you all for taking time to read this..I found a wonderful friend who is going to help me..and I am excited to get working on it...and show you all the web page when it is done...
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As most of you know who read my blog..our lives have changed so much in the past year. Along with Philip's medical bills we now have some major medical bills stacking up from my operations and treatments..and testing.

While I may not be able to go out and find a job right now..I can and so mentally need to help our family stay as solid as possible...Plus I would like to just feel like I am helping in some small way..

Can you help me.  I am looking for someone to help me set up a simple webpage to sell my skinny dip candles and pamper packs.

I want a simple page..where I can have a drop down list of what I have availaible..there is a set price for each along with shipping.

I would need to accept paypal and have that on my blog..

Anyone looking for a little work..a simple webpage?  Yes..good..please let me know

amyb1569@cfl.rr.com

Oh and if you want some skinny dip products ..let me know..I have a great deal going on..while I wait to get the page up and going..

Looky What I Did For You Guys...

Now If I did not have Cancer I would not be losing goobs of my hair.  Which means most likely we would not be needing to have some type of plumbing stuff done in our shower very often.

If my DH had been able to fix the never ending clog from the roof and the drain and his uteering bad words...then we would not of needed to make the call..

The call to the plumber to come and fix my drain.

And I would NOT be able to share this amazing picture with you.

Okay ..go ahead and ask..ask me..

Yes I was shaking as I took the picture.  I saw it..well him...and I walked out and said Amy do NOT do it.  Do NOT take your iphone in there and take that picture.  I even shook my head and said NO AMY.  I even said said my bloogy friends would be laughing at me right now..but would say..snap the picture.  So I did. 

I came in very quite and snapped that picture and why?  For all of you..

Yes..that is how brave and how much I love each of you.  I risked my life to snap a crack picture of the plumber.

Go ahead...thank me...you know you want to..ha