Friday, February 27, 2009

Going To Be A Long Night

It is 2:30 am and Philip just came in hurting and having more of the same issues last night. He has had a lot of medication today including his seizures medications and some additional medication tonight to help him rest. It is not going to work...and here I am his mom at 2 am and can do NOTHING else to help.
You know..I would do anything to help him. I love that young man more then anything in this world. While he has truly been blessed to be alive today..he sure has had a rough time of it. I just so need to find a way to help him physically and emotionally. I mean he is just a kid...and he has been doing this so very long.
I never in my worse dreams would of thought this mean years we would be....not better and ever worse...I am so thankful I did not know what was going to happen. I swear I think it would of ruined all of us. At least we had hope that everything would be okay. And I know tomorrow I will work on having that hope again. But tonight I am a worn out mom who is sick from her treatment and tired of not being able to do what a mom wants and needs to do..take her sons hurt away..
Tomorrow will be better.It just has to be..
Once again..Thanks for letting me have a sounding board. This is my biggest blessing on the harder days.

"Where In The World Did She Hide The Pink"

Okay Okay Okay..I know you are saying my gosh go get some dang pick or order some..let me just tell you all something..I will admit I did go on ebay..NOT that I would of ordered it but I wanted to SEE it..lmbo..They did not seem to have the Fresh and Clean scent body wash one I like...good thing cause I may of hit buy without thinking ..sometimes pain pills can do that..and sometimes good old fashion I want my dang PINK smell good stuff can do that..
Okay back to my rant...yes I said rant. Vent is one .maybe two post..but I am at three post and I plan to keep posting until the little brat..I mean my precious pre teen gives up the goods or I find them. And for those who follow and want to not read not stop following cause I will hunt you down..I NEED my followers...Okay.
I have needs..They are PINK and FOLLOWERS..and not in that order..
I have issues..and not mental ones..and some of you who say But I do have so many serious things going on. Just let me vent I mean rant a little more about my sweet darling selfish preteen...I promise I am trying to let it go. And I will ..when I find the pink..or I wear her down. She can not win. Because if she does now at 12..what will happen when she is 13 and then 14 and 15 and well you know..
Back to my rant. I was kind of getting over the PINK . Well sorta...cause ebay did not have it..and well I am a adult and I was not going to let her know it was getting to me. So this morning I was being a sweet mom. I had to get up to go to the dreaded treatment . I climbed in her bed and cuddled with her and said time to get I got closer all I could smell is ...yep that dang PINK. Hummmmmmmm...
So whatever right..NO not whatever..My sweet preteen comes in my room to tell me bye before school and she has on my shirt and my hoop earrings. She had a cute smile on her face and said..I LOVE your taste I explain to her...Hey Emily..that is my shirt and we are not sharing. Know what she says..okay I will tell you. She says..well if it is in my closet I get to wear it. I said well you did the hanging up so that is why it is in your closet..she says with a big smile..I know..Ha.
Gosh I love that girl. She reminds me of me..scary..huh?
I did feel a little bad for her. We all KNOW how she loves her TWILIGHT ..well she dropped her book in the bathtub..If I were a mean mom I would say Karma..But instead I just said..Oh honey..I am sorry..but you sure so smell good ..wink.
I already found her a used copy of the now ..maybe just maybe...I will have me some PINK..ya think?

My Pay It Forward Box..Thank You Lisa.

What a nice treat...I LOVE getting a box by my front door. So nothing better then coming from the dreaded Dr appt and seeing a box...and then seeing your name on that box...and my mind goes to what in the world can that be..and oh please let it be for me..Okay...I know that is childish..but you know you want your name on it also...right? Then I remembered my sweet friend Lisa and her awesome giveaway that I was so lucky to win. I then did a little woo hoo dance..Ha
I ripped open the box and was thrilled to see all the goodies. A kit to grow me some pretty Forget me nots..a magnetic list to put on my fridge to make a list for Jim for the journal which will be used often..some wonderful recipie cards with a recipie for Bacon Cheeseburger Casserole written on it to start..and one of my favorites is a cute frame for the fridge with punch out words to put on the fride...I LOVE this...She did a great job picking out some great things..and they will go perfect in my kitchen...
Thank You Lisa...I love them all.
In the next week I will be doing my own Pay it be sure to check back..

Thursday, February 26, 2009

Thank Goodness...God is GOOD

As some you know we have been waiting for a appt for Jim to see the neurosurgeon for a few weeks. I have called everyday to see if they happen to have a cancellation before his appt in a few weeks. Today they called and Guess What? After weeks of me calling and they saying sorry none yet...Today they called us at 4:55 and said they have one tomorrow morning at 10:25.
Most of you know I am moving rather slow from my surgery. But when I saw the name on the caller ID base I jumped up and ran..well I waddled really fast to that phone and yanked it up..
This is a big appt because Jim needs to go ahead and get the surgery on his back to relive the pain of the disc on the nerve root..and to clear up the bleed from the epidural that will hopefully help his BP go back to a normal range.
The sooner all this gets done..the sooner he can get back to work. I know this may sound really blunt. But in reality this is a necessity. We are not going to survive with him out of work. I have been really worried how we are going to make things work. It is no secret...Philip's medical bills are very expensive and my operations and treatments were very unexpected. But also I think we need as much normal as possible here in our family..and that starts with Jim back healthy and strong physically and mentally.
So tomorrow is a BIG day. I am so thrilled we were blessed with this earlier appt. I had all but given up calling every day.

Wednesday, February 25, 2009

Medical Update

Got Great News Today...My Brac 1 and 2 were Negative. I am very happy about this. while it does not mean anything in the big picture of breast cancer or Ovarian does mean the DNA gene is not there ..and that is a blessing and means some other issues such as preventive surgery do not have to be addressed. So what a blessing..
I know some of you had asked me about my treatments and my I thought I would post a little about what was going on..
A little about my medical issues....I am also careful with what and how I say things because I never want to say something in a way that if one of the children were to read it or hear about could scare them...

As most of you know I found out I had cancer after having surgery on Dec 10th to remove three lymph nodes that had grown very large.
When they did the pre mapping MRI the scan found that I had some nodules in my chest wall that would also need to be followed. The radiologist said that these were found as a fluke because I was shorter and the scan piked them up. Due to having these nodules to has me as stage two. Plus since there was disease in more then one lymph is classified as stage two . Once again very blessed.

I have had PET scans and Cat scans, MRI scans...One things that I did not understand was why I would need to do anything other then the PET scan. But it was explained to me that while the PET scan was a wonderful tool...for some places in the body a MRI or Cat scan was better. So I am feeling like we are covering everything. I am due for my next PET scan the sec week of March.

My Diagnosis is
Non Hodgkin's lymphoma
Stage II: Either of the following means that the disease is stage II:
  • Lymphoma cells are found in two or more lymph node areas on the same side of the sheet of muscle (diaphragm) that separates the chest cavity from the abdominal cavity.
  • Lymphoma cells are found in only one area or organ outside the lymph nodes and in the lymph nodes around it. Other lymph node areas on the same side of the diaphragm may also contain lymphoma cells.
I will be going to a different specialist to help with the autoimmune disease. This has made treatment a little harder but we are working with a RA specialist and a Infectious Disease Dr and a awesome oncologist. They all seem to work well together and that makes things go easier.

Another issue is my Epstein Barr Virus levels are very high and have been for a while. So we are watching that. They are watching my spleen far it has looked fine.

Each week I am doing my treatments. This consist of Chemo and steroids. After my PET scan if everything is stable I will continue my chemo but it will be be on a different schedule. We also may have to consider doing a open biopsy of the nodules on the chest...I sure hope not. I am not complaining but 3 major operations from Oct 31st is enough...I am ready to get this done and move on...But of course I will do whatever needs to be done to make sure we are on the right treatment path.

I am working on healing from my last operation. I had a little set back the last two days but am laying low and working on getting back on track. I know that this weekend I will have some down time with my treatment so that will help with my recovery....

As a family we are working on finding a balance of normal...we are making a new normal...


Philip had a bad night...He started the day off rough..he was not feeling well and stayed in bed until after 2:30 today. He decided to go to youth tonight with one of his friends. After being there only a few minutes he ended up calling and said he needed to be picked up right away he was feeling really bad. I hate those calls..they make me sad and scare me..He said his head felt like it was going to explode and he was in severe pain. This was after his extended release morphine pill and 10 mg perocett .
Sure enough he had a big seizure tonight. He has taken his seizure meds and is laying down.
I pray for a better day for him tomorrow.
We see the surgeon in less then 2 weeks for the consult on the brain surgery cath and also the pain pump. Big decisions and lot's of unknowns....
I do not mean to be a downer..but sometimes like tonight..I just can not help but in the world did we get to all of this and how did things get so complicated.
One thing lead to another and another..and now it seems the worse seems to get worse. Please pray that this central nerve disorder is going to slow down. It just breaks my heart.

Wordless Wednesday

( Almost ) Wordless Wednesday..I have things to say...Ha
Look how sweet she is..she looked like she loves me enough to even let me use her PINK..But see pictures do not tell the whole story..No pink still this morning..No freakin Pink.. Did I mention I gave birth to her and she will not let me use her dang Victoria secret Pink?
What in the world am I going to do with this child?

Tuesday, February 24, 2009

Where Did She Hide The Pink?

So get know my sweet loving daughter? You know the one who loves me oh so much..the one who would do anything to make me feel better? Her name is Emily Grace. She rubs my back and sometimes she washes my hair in the sink for me..she has even offered to shave my legs..that scares me...cause I swear she has this look of...ha I have Pre PMS on her face when she says she wants to shave I say no thank you sweetie..
Okay back to my by now all of you are think how sweet and loving Miss Emily is right? I bet you are thinking there is nothing she would not do to make her mama feel better..right? I mean I did carry her for 9 months and gave birth to know yadda yadda yadda...

Do you know what the that pre teen brat did...oops..I mean do you know what that sweet oh so loving daughter of mine did? She hid her PINK Victoria Secret body wash from me. She got it for Christmas and I had been using it in the bath. And she hid it from me so I could not use it. Now let me just add that this child uses everything I own including trying to wear my jeans which is too funny to how freaking dare her hide her PINK body wash from me. She mentioned something the other day about how much she liked it and I said I liked it too and she said..I can tell you smell like you have been using it is gone..hidden...I have looked and looked. How dare her. I have a good mind to wake her up and make her tell me where my PINK is...I mean where her PINK is...what happened to us sharing?
People...where did I go wrong? Did I not teach her how to share? She knows I need that PINK body wash..Now I am thinking she is grounded..
There I said it..and now you know...she is NOT being
Yes I just told on my 12 year old..and if I do not get the pink body wash soon..I am just NOT going to bathe...that will teach her..Ha..
I am going to let my pain pill work and to try let this go..ha.

Tuesday's Tribute..It's Time To Give Back

So Jay has started this new Tuesday idea. I love the idea of focusing one someone else vs myself. Because the truth be known I am about over myself..and maybe some of you are over me

Today when I think about what I am thankful for what comes to mind is...each and everyone of YOU. This may sound like a sweet cute answer but if you really stop and think about it..what we have here is pretty special and unique.
In the world today we all could be a little guilty of living in a fast pace...all about us and on the ..go non stop.
Do you have any idea what a special feeling it is for me to know that I have each of you visiting each day to see how I am doing. I KNOW that when I am awake in the middle of the night sick, worried or scared that when I post that within minutes someone will matter what time. And I also know that on the harder days when I can not feel the strength that my prayers are working..I know without one doubt that you are storming heaven with prayers for me. It lifts my heart, my spirits more then you will ever know.
Each of you have taught me the meaning of giving back. And I plan to do just that.
Thank You for not letting me do this alone. These are not just words..These are feelings. I feel your support and I know you care. Thank You all . It is the best medicine for me on the harder days.
I am so thankful for each of you and I am blessed to have you in my life.

Monday, February 23, 2009

Reality ...warning...some venting..

Well I am going to vent for a few...This weekend has been rough...really rough. I am having a really rough night. I have been sick all afternoon and non stop tonight. Non of my normal after treatment fixes have worked. I have had way too many SF frozen pops.
For some reason this weekend I had a headache to go along with everything. So It made everything seem harder. No matter what I did the headache would not go away. I took some pain meds to help with the pain from my surgery and still the headache is here. So that seemed to make the nausea so much worse. Even the melt in your mouth Zofran has not worked. I just took a phergan and am going to see if I can stop throwing up long enough to fall to sleep. This day has to end..Looking forward to a brighter day when I wake up. I hate feeling so sick and weak. To be honest I am missing the old me a little tonight. But she will be back...I so hope it is soon.
Since I am being so blunt and honest. I would like to ask for some prayers in another area., As you know Jim is going to have surgery on his back. He sees the DR March 4th. He has to have a neurosurgeon do this type of operation so there is a wait to have it done. He is on a waiting list. I call daily to check for a cancellation. Due to his BP he is unable to work until he has the operation done and then I think there is a few weeks recovery. With Philip's medical bills and his upcoming brain operation.. My co payments..and operations etc .I am pretty worried about our bills. I know deep down all will be okay. I also know I am suppose to trust in God that we will be okay. And I do know we will be. But somehow I just can not help but worry. Things seem so very overwhelming right now. I tell myself daily it could be worse..and it could be...but is it bad of me to think..they could be better?
Okay..I have gotten it off my now I can try to let it go..
I pray the meds work and I can get some sleep. My head feels like it could explode and I just know I can not be sick anymore...can someone tell my body that.
Okay..Now I am done complaining..really I am..
Wanna hear some of the best medicine I had tonight? Emily laid in bed with me tonight and we watched one of her shows and she rubbed my back after I took my Zofran to see if I could fall to sleep. So she fell to sleep...and I ended up watching her She takes such good care of me..I am so blessed with her as my daughter.
Goodnight my dear friends. Let's have a Blessed Monday.

Friday, February 20, 2009

Been Thinking Of A Idea

As most of you know my son Philip is one of the biggest blessings of my life. I am so proud to be his mom. Back when he had his first brain operation there was no such thing as Caringbridge or Blogger. I have been thinking how nice it would be to document some of Philip's miracle with pictures and facts and the story etc.
I thought since so many of you pray for him might all enjoy seeing just how far he has come. His story is such a miracle.
So keep a watch out in the next weeks for some post starting from the beginning..and following through to where we are now. It would be great thearpy for me..
Maybe I will even see if I can find someone to help me make a cute icon thingy..

I also wanted to let you all know that Philip is going to be getting a MRI in the next week to look at the brain stem , the stroke area and the syrnix. He will be seen at the DR in two weeks for a consult for the operation . While it is a complicated operation for seems like we just do not have any other choices. Maybe something will change in the next few weeks. We hold on to nothing more or less then our faith. It has carried us so far.

Something On My Mind...

Ya know when you just gotta say it...Okay I just gotta say it...But I am not so sure how to say it...Let me try it this way...

I LOVE that people come to my blog and support me. I LOVE to know without a doubt that if I need support day or night I can blog and within minutes ANYTIME day or night someone will what a feeling of comfort...But ( don't ya just hate that word)...

I really want everyone to come to my blog and visit because they like me for me...not because of my drama or because I am sickly or pathetic..I feel like I should put a LMBO after this but deep down I kind of mean it..

Let me see if I can explain...

Today someone made a innocent comment and it got me thinking about my blog. I had a direction I wanted my blog to go when I started it. Like most things in life...plans do not always go as we plan...I had no idea when I started my blog that I would be having these medical issues. What a blessing my blog has been for me to have each of you support me.

As much as it seems that I have posted lately about this or that issues. I can be fun and carefree and funny and fun loving...really I can. ( I think I can )..I think deep down it is still there. And I promise if you stick with blog will get back to being fun loving ..
There is more to me then me being sick with Cancer.

And when that happens I hope each of you will stick around. I am so blessed getting to know all of you..

Until then...I will be trying to heal from my surgery and stay hydrated from my treatment... weekends can be rough. So come keep me company..

Wednesday, February 18, 2009

Wordless Wednesday

( Almost ) Wordless Wednesday..

Who needs a housekeeper with this handsome helper? I think I do... What does it mean when you walk in the bathroom and your youngest son is cleaning the toilet because he says it is yucky?

Tuesday, February 17, 2009

My Pity Party...

I have not thought I was depressed until today. Today I lost it. It has not been pretty. Swollen eyes, nose...ugly. For days now I have dreaded my mom leaving. It has been so nice for her to be here. And now I lay here and watch her packing to go and the tears just flow..way to easy.
The funny thing is...I just really have LOVED her being here. It just made me feel so secure ....and now I am feeling pretty empty. I did not see this overwhelming feeling coming but it is here and it is not good.
I know I am blessed. I have no doubt about it...but I feel pretty empty tonight. I know it normal to be sad because she is leaving...I mean she is my mom. But I can not seem to shake this crazy feeling...that I have nothing much to look forward to. I know I do...I am a mom and a wife ...but....
I think when I had my first operation it was on Oct 31st and I knew the holidays were coming soon. Then I had the next operation and it was Thanksgiving and Christmas and then the Diagnosis of Cancer. Then there was so much going on with all the scans and appts etc. Then I had this new operation and I knew my mom was coming. Now she has been here and is leaving...and really ...all I can seem to think is..what is there to look forward to? I should be saying Living...but my heart just says...I just seem so really sad and I just can not seem to stop the tears. Someone tell me to stop these crazy tears. I could end up needing extra fluids this week. Ha
It is not like we did anything so wonderful..I laid around and watched TV . I threw up for days and tried to heal from my operation and treatment. Plus it was nice to have her here while Jim was in the hospital. But it was nice to have her here...and have here and know she just cared what was going on. I guess that is what moms do...huh?
I guess maybe I am just down and tired and sick and sore and yadda yadda...but as much as I hate all those..I hate being sad. Stinks to be sad.
I guess in reality I did not really realize just how alone I had been feeling until my mom was here.
Oh someone please tell me to hush...

DH Update

Today we saw the specialist. It was a good appt. The thought is his BP is high because there was a bleed from the epidural he had last week. This was not a good thing. The new MRI showed that he is just going to need to go ahead and get a procedure done. There were two choices.
One where it was vauge on the outcome and not a sure thing...a simpler procedure but in the end it was a gamble.
The one that was decided on will be done with a Neurosurgeon. They are faxing the paperwork over tomorrow. So we are hopeful that we should get some info on a appt date. This procedure is more involved BUT it is a more sure fix. So in the end it was what was needed. We can not afford to half do and hope for the best. Plus the DR said with his BP issues. The open procedure would make it easier to see what needs to be done.
Until then Jim is not able to work. I am crushed about what this means for us with our bills. And he is on BP meds around the clock.
Tomorrow we should get some dates and times.
I think in the end..this is a good thing. A plan of action .....

Tuesday's Tribute..It's Time To Give Back

Old Friendships....The Small Things That Make It Special...

Imagine my surprise when Emily calls me while I am at the hospital and ask me if I ate popcorn when I was pg with a friend at the hospital. I said HUH? She said well Mom someone dropped off a bag with popcorn and salad...I said oh my goodness was it white cheddar popcorn and such and such salad...she said yes how did you know...I said..I just knew that minute...I felt such a feeling of .....I do not even know how to describe it....just comfort. Not that someone brought me popcorn and salad and fruit. But that they knew WHAT to bring...Let me explain.
Over 18 years ago I walked outside my hospital room and saw a young girl in labor. We talked a little ...and I walked to the nursery and wished her good luck. A few hours later I found out I was getting a room mate and guess what....yep it was that girl..Jill....what a blessing. We bonded from that minute on. She had her little girl...I had my little boy...and we had a friendship that was special. If you were to ask her she would tell you that she watched Philip pee pee on me the first time. She would tell you I was so drugged up from my csection that she had to help me with the snaps for Philip's outfit. She would tell you that Philip was born 3 weeks early and I did not have a bassinet and she had Matt go get the extra one they had and drop it off at my inlaws.
What she may not tell you is...she made my first year of motherhood special. I can remember spending the night at her house and Philip just crying all the time we did not know he was sick..and she helped me for hrs trying to find a way to make him sleep. I can remember her coming to the hospital to be with me when Philip had his brain operations. I can remember her bring her sweet daughter and having her lay with Philip in the crib and spend hours with me at the hospital. I remember her and Matt coming for Philip to be baptised the night before his operation when we did not know if he would live through his first brain operation. I am not going to mention when she watched him for me to meet with the specialist and there was some nursing involved because he would not take a bottle...Gosh what a friend...
She went in with Jim and took pictures when Reed was born. She babysat my kids while Philip was so very sick. The list goes on and on..
Jill would bring me bags of cheddar popcorn and salad and candy bars to the out of town hospital. So when Emily said that there was a bag of popcorn...I KNEW...
What is so special is Matt was in the Military so Jill moved to Hawaii and was away for a long time. And now has moved back. But notice that even with all that time seemed that time stood still....she brought me back to those days of...just reminding me that she cared and was there and wanted to do something to know she was here for me. And want to hear the most awesome part. She did not even know that Jim was in the hospital. She just had this feeling.
It is the little things....that mean the most.


I will be able to update more tomorrow. We are having a consult with a surgeon tomorrow to move forward with surgery for Jim's back. The thought is that the BP could be caused because there was a bleed from one of the epidurals he had done to help with the disc issue he has been dealing with. He had one last Tuesday and the Tuesday before that. The new MRI had some serious issues on it compared to the one before it. Jim is now on three different meds and this is not doing a great job keeping his BP down. Jim has never had a BP issue before so I am hopeful that this is not going to be a ongoing issue once they can get the back cleared up.
He has been home on bed rest for 24 hrs and so far it has been really hard on him.
So tomorrow will be a big day. I will go into detail tomorrow but there is a hummm story with the Dr we are seeing...I know many of you will enjoy hearing the full story. There is a twist.
I have been sick as a dog..well you know what I mean after this last treatment. Thank Goodness my mom was here. I just have felt like I have had my butt kicked. My healing is slow from my operation ...but I will heal. Baby steps...
I am hopeful Jim can get his back worked on this week and that way he can work on healing ...cause my treatment day will be here again in a few days.
I do have a Philip update appt. It is detail...and late. I am going to hold off and post about it tomorrow. if I do it tonight..I will think about it all night...and I have done nothing else for days..
So for now ...tomorrow is a BIG day for specialist for Jim to see if we can repair a bleed from the epidural and remove the disc....
I know I say this...But I have never meant it more...
I have never felt more support then I did these past few days. I just knew when I felt so bad and worn down that each of you were lifting my whole family up and we would all be okay....We are so Blessed By each of you...Thank You...

Friday, February 13, 2009

Quick Update

Just got back from the hospital. Jim is still there in the heart center. He is still having very high BP. I just have no idea why or what ion the world is going on. Today seem to kind of drag with just trying some different meds and tonight the DR came in and out one after the other. So tomorrow he will be having a lot of new testing done and I hope so clear answers. Cause BP 225/155 is not going to be something that is okay. One concern is could the epidural caused some type of issue with his he will be having a new MRI tomorrow. Also a heart scan . And some other test on his kidneys. I know he will be okay . But I would like for it to be right now so I can just KNOW he will be okay. He just needs to be okay.

The appt this morning with the DR was rough. Hard. Blunt. And he just was not easy on me. He said what he thought. I listened. I said I was sorry. I told him I would not beg to stay in the program for Philip. I told him I thought he was the best DR for Philip. I told him that I never meant any sneaky awful behavior with the issue. I made a mistake and I was sorry. I then said. As I said I will not beg. I am asking for a second chance but if you want us out then I will understand and we will find a new DR. He said we would work on a new start. I must say..that in the end of this..I learned a lot and a lesson. Maybe this will make me a stronger advocate for Philip in the end.
There are some medical updates too. But I am going to hold off on those until we get some more info from the neurosurgeons. It is complicated and scary. And to be honest. I am so tired I just can not explain it tonight. I will just say that it is complex and I just am not sure there is a clear path. So I will pray. And I bet many of you will join me in praying for a clear answer for Philip and his DR.
I had my treatment. Long , hard and done. One more week done.
My mom got her a hr ago.
And I am going to need to spend tomorrow laying down more because I have had some set backs from my surgery and it is a clear sign of overdoing. Somehow my body does not understand the idea that ...I just gotta do this or that...and it has rebelled. I think it is going to win...

I will update tomorrow about Jim. I hope it is great news.

Hugs to all my wonderful supportive friends. Today I could FEEL the support. And today I needed it. Tomorrow is a new day and it will be a blessed one.

Thursday, February 12, 2009

Lot's going on today

This morning I meet with the Dr to see what he wants to do about Philip and this awful pain issue and weakness he has going on in his left side. There is some added stress of this appt because of my last appt This will be the first time I see him since that appt.
I pray for a clear answer for Philip and a understanding from the doctor. I think it has been good that I have not seen him for a few weeks because I have a little different thought about it. If he does not get where I was coming from then he is not the right DR for Philip. But deep down the idea of knowing he is the best one to do it makes me know I need this appt to go the way it needs to go. I am trying to hand it over to God. He knows what is best even when I think I know better.

Something scary has happened and I need to ask for prayers, once again. Over this last week Jim has had some issues with his BP. The reason we know this is because he has had a few Dr appts. A week ago Jim had a scan of his back due to some back pain. It was found he had a disc problem and they suggested he see a Dr for a epidural. We were excited that they would be able to treat it this way before even thinking of any surgery options. At that appt his BP was very high. The DR said it was due to pain. When they did the scan his BP was very high again. The following day at the epidural place his pressure was high but they said he was nervous. The day of the scan they had to give him meds to get it down. So two days ago he felt bad and ended up in the ER with his BP real high they gave him a pill...I can not think of the name..under the tongue and it went down and he came home. I called and had him a appt this morning with his DR to get to the bottom of this. Last night he started sweating real bad and felt like he was going to pass out. He said I needed to call 911. Of course that scared me too death. I got him to sit down and got his dad here. he got him to the ER and his BP was 225/155. They gave him meds non stop and it stayed up. I spoke with the DR and they were taking him to a cat scan to rule out a clot. He has been admitted in the heart wing. Of course here I am not able to sit up from my operation. Loading up on pain meds for a 8 am appt to see the Dr for Philip. And just not sure what I needed to do last night. His mom was stern with me that I needed to be well enough to do Philip's appt today and my treatment today. I have been sick all week from the operation and the treatment last week. So I am not sure I would of been any help. Plus the germs in the ER could of been really dangerous for me. something is going to happen. I am NOT going to NOT know if he is okay..I hate not being there with him. I had thought that the heart center is not as sickly with germs ...I could slip up for a few minutes and just make sure he is okay.
He has never had BP issues. And even with all the stress meds would be taking it down. I am scared something is going to happen to him.
I am so thankful he is in the right place and they are taking such good care of him.
My mom is coming tonight. Thank Goodness.
I know this is all going to be okay. But I slept none of any and I just feel real on edge. baby steps...first get this appt done and over with. I am so over thinking about it. Then get to the bottom of what is wrong with Jim , Get him fixed and well and HOME. Then get my treatment. Stock up on SF frozen pops ...and start fresh tomorrow. Can I get a Amen?

Saturday, February 7, 2009

This is Emily

My mom is not online for a few days. She had a operation on Thursday and is in a lot of pain. She is not moving unlessshe has to. She says that alot. She has to have help getting up and down out of bed. It is hard for her. And is not able to sit up yet. They took a piece of something to test and had to do something with a muscles. It seems kinda yucky. She has to have more in 6 weeks.
The doctor said she will be on bed rest for 6 weeks. She hates the bed.

I got a surf board for my birthday. I am 12 years old and my first surf board. IT is blue with a hibiscus on it. A local guy made it so he put my name on it and the date. I also got a used wet suit . Now I just got to go surf. They say it is too cold but I have a wet suit. I took a lesson in Hawaii when we were there for Philip's Make A Wish Trip. It was awesome. I think I will live there one day on the beach and surf. Maybe my mom can post a picture of my awesome board one day soon.

I still heart Edward. I got a new bag with his picture on it and a shirt for my birthday from my cousin. It says I like boys who glitter. with glitter all over it.

Okay my mom says I am done now.

Favorite things swap

Mamarazzi @ Dandelion Wishes is hosting a Favorite Things Swap. And I already have lots of ideas of what goodies to send.. VERY exciting..

Thursday, February 5, 2009

Busy day...

I had my treatment this morning and blood work. I am cleared for my surgery today. Can I tell you a secret? I wish I had not been. I know that sounds awful. I just so do not want to do it. It does not feel like it is the right timing. Gut feeling or nerves?
I am having a pretty painful biopsy and operation done ...and will be on bed rest for a few weeks. On pain get
So will you all visit me? Entertain me? Pray for me?
Have I mentioned just how much I adore my Blog family?

Follow up....from post "Today"

Some of you may of read my post on Tuesday about a worry I had with a appt for Philip. We did go to the appt with the PA and it went okay. He asked a lot of questions about Philip and his history. That always makes for a emotional day for me...somehow living it is enough for us...saying it out loud makes it more real. Crazy I know...
He asked me who I was to Philip and I said his mom and he was shocked...Ha maybe he takes some meds...ya think?
I told him that Dr. D was mad with me and was worried he would not "get over it". He said If I am over it ..meaning the PA then Dr. D will be too. So I said can you put that in his chart...ha
He gave me and Philip a long talk about the problems with long use of pain meds...Yes Yes I know...that is why....well never mind..ya'll know.
So we meet with DR.D next week to discuss the brain he said it is more complicated on Philip due to his 15 brain operations. There is a lot of scar tissue back in the deep brain area due to the stroke and shunt issues. But we may not have any choice.
Maybe next week DR.D will have another idea.
I FELT your prayers Tuesday. I have been worried sick. You know how your mind gets carried away...well mine had gone crazy. I wish I had let you all know earlier in the week so you could of helped me with it. For some odd reason I was just so worried about it I could not get past that ...But I am better..and what will be will be.
As always...we are blessed to have EACH of you praying for Philip and I family daily. I feel like we have our own village of prayers warriors...Who could ask for anything more?

We ALL Love to Read your comments..

It is a exciting job ...watching for the wonderful comments but I have help...
Beanie loves to watch and wait...

See how he turns his head and meows to tell me there is a comment...

He does get cuddle breaks with his brother...ahhhh how sweet...

The only problem is...I keep finding him sleeping on the job....

What a sweet little helper...huh?

I am off for my dreaded treatment...Beannie is in charge..ha

Wednesday, February 4, 2009

My Kids Say The Darnist Things..LOL

So I thought I would share with you some oh so cute comments that I heard from my kids this week....

Cole .. Mommy...know what?
Me...what Cole...
Cole...I am going to marry you...
Me..Oh Cole..Mommy loves you...when would we get married.
Cole...when it snows here..
Umm..we live in Florida..Ha

I tell Emily tonight how blessed we are with some of my past scan results. So I say to her. Yes there are nodules in some places that we are treating...My brain scan shows serious as can be she says..Oh I have known that Mama...hummmm

Tonight I am drying Cole off from his bath and I say Cole where did you get that tiny cute butt...and my sweet daughter says..Not from you mama...Grounded..LMBO

Reed has a really bad cold and he says....being really serious...I am so sick mom. You have no have never been this sick. So I remind him that I have been sick a lot lately. He looks at me and says..yes but you get Chemo and steroids for that. Woo Hoo Reed...Lucky me...Teenage Boys..

Last but not least...almost daily Cole grabs my face and looks under it at my neck. He says as serious as can be...Mommy who cut your neck? Cause I am spider man and I will get them for you....So I explain that no one cut it and I had a operation and the Dr did it to help me. So he will say..Okay spider man is going to get that DR. I guess Cole AKA spider man should not go with me to a follow up surgery appt....huh?

Oh and Jim did mention last week that I had no idea how scary and stressful my cancer was....I looked at him and he said..Oh I guess you do...Oh gosh...I love that man...LOL.

Things like these make me laugh...and I so need to laugh...I hope you enjoy these as much as I did...

Life Thoughts

The last few days I have been really thinking about life. Not the everyday living we all do but the real idea of the LIFE we live. Some of us live long some of us not. Some of us are moms and a grandmama. Some are a wife or sisters a daughter etc. But I wonder if these are the things that really make up what OUR lives are all about.
I can not help but wonder who I would be or what my life would be if God had not been so generous to bless me to care for my oldest son Philip . Would I be who I am today? I doubt it. And that in itself is some good that came from this hard issue. I found out that life can throw us a hard ball and we can catch it and run with it or let it smack us in the face. Trust me I have done both. In the end being smacked in the face with it HURTS worse. Ya know?
This week there was a lady at the oncologist office who was thin as a rail and very old. Her DH was with her holding her hand helping her make all kinds of appointments. I noticed when they went to give her her shot to boost her blood counts her arm was so thin and her skin paper thin...and yet she looked up and smiled . Wow. I would love to of asked her to help me find whatever she has in her that helped her be able to smile through all that. But thinking back on that now...I bet you it was life lessons. I want to be just like her....
Then today there was a lady at the store who could not find her car. She was older and confused a little. When we found what we thought was her car...she said that is good cause I was about to steal one. I just love that sense of humor. I bet she has leaned on that through the years.
Something that has so touched my heart this week is some special little children. I have followed some children daily for well over two years . Some get better some and too often some do not. I have met a few moms that I know GET it when I need them to GET it that I am hurting and worried or freaking. It is a unspoken vibe. And it has allowed me to help a few moms who children are facing shunts. One mom name Melissa has been so supportive to me with Philip and yet we meet because I emailed her when her son Reese was facing a shunt. Sure enough Reese got one and shortly afterward Philip's was infected and we spent almost a month in ICU. She was the first person to email me. I have watched her grow with the idea of Reese having medical issues and dealing with the physical and mental worries. A example of Life lesson. She could of thrown a fit but she did not. She embraces it.
This week has been a hard week for so many children I follow. Each morning and every night I log on to check on them. Everyday this week there has been a unexpected death of a child fighting hard to live. I can not begin to tell you how sad that makes me . I can not imagine the grief their parents are feeling. But something touched me and made me think of this whole life lessons.
A little boy name Kassey last night told his mom he was sorry he really thought he might die. His mom had a very honest talk with him in the dark of the night and they fell asleep. Sweet Kassey who had been more brave then anyone I the young age of 11 died this morning. Looking back over the post about Kassey...I wonder how someone so young can be so brave and so strong. Life lessons.
I need to work on my life lessons. I wonder if I am embracing my life lessons or fighting them? I just can not wrap my mind around the whole this is meant to I missing something? Is my vibe causing some issues for me? I want to be one of these who embraces life and takes it for all it is worth...but I am worn out. Am I worn out cause I am not embracing it?
Just me thinking out loud...

Tuesday, February 3, 2009

Tuesday's Tribute..It's Time To Give Back

Last week there was a knock on the door and Emily opened it and said there was a box. Sure enough there was a box with my name on it. I had no idea what it could be. I opened the box and saw this beautiful wooden plaque with the most true words...

We Are Blessed. I just love it. Isn't it so pretty?

The truth is I am blessed in so many ways. The gift from this very special friend was a true example. I now have this plaque in my entry way and above my kitchen. I will see it everyday. On the good days and the harder days. And I will be reminded that I am blessed . And I am thankful for my friendship with her and all of you. The simple things in life mean so much . I am just so thankful for all of you.


=Today I could use some prayers from my wonderful faithful friends. You may of noticed that this past week I did not blog except for yesterday which I wrote earlier..I so hope you all enjoyed my story.
This past week I have been worried....worried in a way that I have made myself sick. There was a issue last week with a appt for Philip that turned complicated . I felt a little attacked a a mom and yet at the same time I could see where the DR was coming from. The appt ended on a very off note and I have been checking the mail everyday for a letter of discharge for Philip from his Drug program. Who would of thought I would have a fight about me under medicating him and them wanting to over medicate him. It is a long story and to make it simple...I dropped Philip pain meds because he could not function on them...he slept all day...he rubbed his nose all day...he made no sense all day...and simply he could not function. The issue was his pain was the same on the pain just he was drugged. So when Philip took his drug test he failed it due to too LOW of a drug level. I should of spoken to the DR first about this. But as a mom I just did what I thought was best . The rules of a drug program are different and strict. Funny how I am worried about him being kicked out for too little of drugs vs too many which is why most get kicked out. I came home freaking out...sick..thinking..I have ruined Philip's chances at getting help ....guilt is not a strong enough me.
A wonderful friend called and I was crying ...scared...not knowing what to do....and she with it. So the next day I went and gave a letter to his nurse . He was not there. Today we are due to see his partner. I know our DR is on vacation so he may or may not of read the letter. But today we may get removed from the program. Everyday I hold my breathe when I check the mail. It is crazy.
Part of me knows that I am a mom who is trying my best. Part of me knows I handled things wrong and I would do it different if I could do over. Oh over...what a nice concept...huh? One reason this program is so important is...he is the best...he is the one you with saying that....why did I not trust him or talk to him....I planned to but the test came first and them I was thrown off guard...excuses..I know...
The reason I NEED him to be with this DR is he is such a great suregon. And Philip's needs are so complex....with the prior brain operations. He is the best and I need him to be the one to help Philip. But not on that many meds. And yet I know this was a short term trail of meds. I just did not think things through.
This week I had him take his meds as the DR wanted...and he could not function. So today is the day. Today I find out what is going to happen.

So here is the letter...

I wanted to write you this in case I do not get to speak to you before our next appointment. I owe you a explanation about Philip's drug test .
Philip has been taking the morphine extended release daily and had been taking the perceott 10 mg for his pain. He also had been on the anti seizure medication. During this time period. He was sleeping more then he was awake and doing nothing .As you know I have always fought very hard to make sure Philip is active and involved in school and active with his friends. On this medication he did nothing and could not function . I made the mistake of trying to adjust his medication lower to find a balance. I should of contacted you . And was wrong and I apologize . I thought if he took the morphine and the loratab he could have some pain relief and still function. I was trying to find a balance between pain relief and seeing Philip function.
Earlier this week his pain level reached a very high level and I realized that my idea of a balance was not working and added back his meds. As I said he has been on the extended morphine daily. I added back the seizure medication . He has been at half dose seizure medication for a week and now is at full dose. So as of now he is on all meds full dose. The Morphine daily, seizure meds , perceott. He will not be missing any of his meds. I will keep a log. And you can urine or blood test him anytime you feel you need to. There will be no issues with any future drug test.
As you know I have always told you that I have been worried about the pain meds. But I also trust your judgement. I know you know what is best for Philip . I am sorry I did not handle this the right way. I was trying to help Philip and in the end I guess I hurt him. I am just a mom who is still learning. I did not plan to not follow your plan. I just had my operation and then was diagnosed with cancer and started treatments. One things lead to another and I tried to fix his issue. If you will I will let you fix him and I will stay out of it.
I have brought in the original bottle of meds to show the nurse so you know there has not been a issue with the meds. And as you know he will not be needing a refill for a while. I am still very hopeful you will consider a procedure that can help him without strong meds.
I trust your judgement. And I need you to help Philip get better. Please do not discharge him from your program. We need you. I would hate for Philip to suffer because I made a mistake trying to help him. If you would let me know ASAP if you are going to let him stay in the program it would wonderful. I am very concerned about this. And so is Philip.
Thank You,

Please pray for some calm peace for me to help Philip get clear answers today. I am still feeling pretty sick from my treatment and not myself. But today is the day and I need to just do it. So would you all help? Pray for me to feel strong and in control yet open to listening to a solution.
I NEED Philip to be okay.
I am wondering if God knew what he was doing when he decided to have me deal with these issues daily for Philip....Can there not be a cheat sheet?

I am dressed and my hair is done...a little lip gloss and some smell good...and I will go and hold my head high and say...I am a mom...I did the best I did with what I I will do better...I will not beg...

Anyone wanna go with me and hold my

Monday, February 2, 2009

Not Me Monday

I thought I would try to start this crazy week off on a good note with some NOT MONDAY Therapy. I so need some
A few weeks ago I mentioned to my sweet friend Grace that I did not receive a plant that she had sent to me and was due to be delivered. She had contacted the company and she then emailed me to tell me that I could pick what ever I wanted in that $ amount. So we went back and forth in emails and joked about what I could kill faster and yadda yadda. So we decided on this really nice plant and all was good. Then I get this says ...Thank you for you for your order and it will be sent on Friday and we thank you ...and I see Grace's name on it and I assume she has forwarded it to me from she had with the others. So the next day when I was stressing about my diet I hit reply and I say...Oh you know I plan to just kill this plant so I should just order the candy and cookies and the snacks and the chocolate strawberry's and not murder the plant...
So a hour later I did NOT get a email back that read ...
Dear Mrs Briggs...
We are sorry you plan to kill the plant. We assure you it is a nice selection. Please do not kill it. But if you would like you would like to change you order any of the other selections you mentioned, please let us know before noon Thursday.
I did NOT send the email to the company and not Grace.
And then I did NOT send the lady a email back explaining in detail that I was not going to murder the plant and that I was just feel weak from starting my new diet and that I was on pain meds.
Humm..I did not hear back from her but my plant is still alive.
And I am NOT very embarrassed about this. OMG. LOL