Are you guys excited tomorrow is Friday? What does everyone have planned..anything wild and crazy? Me...just going to try to rest and work on rebuilding my strength some. These new treatments are kicking my butt and taking notes..BUT I am determined that I will win this battle..and with every ones prayers and support...I know I will.
A few people have expressed some frustration with the lack of details about Philip. I would love nothing more then to share every last detail of what is going on with Philip..but I do not. Out of respect for him and our family. I think sometimes I have to remind even myself that things that are posted here are read my numerous people..and sometimes there are feelings and issues I just can not share. But I have a strong feeling..most know my heart ..already ..without me having to say a word.
The truth is...this is not a drama or a book. it is our life. It is a battle that I am trying to find a way through..and some days I feel like I do a okay job and others I admit I am not so graceful with it. But I am trying to find my way..each and everyday.
So when you do not see me post "full details" of what is going on...Just know that maybe things are a little hard and I am working on finding a path through it.
With all this being said..Philip is just having a very hard time. We have added meds..by mouth, by injections, by pain patch and by his pump. His pain level seems to be worse then ever. The DR are consulting what we need to do next. Our big prayer was that the meds going into his brain and spine would help..we are back to square one..
Philip also has had some issues with heart He has had some very scary things happening...and the DR is looking into this. It could be meds related.
This week was pretty scary. Philip had a very bad seizure on Thursday early morning. He was very confused ..to the point he did not know where he was or who we were...His meds were increased and a massive dose of adivian given. He slept for 16 hours.. I never want to see that type of seizure again.
Now how about something that I am thrilled about...Philip got his hair cut very short. He knew he would be having some medical procedures done that would be easier to recover from with his hair shorter. This is a big deal for Philip because he hates his hair short due to all his scars. You can also see the shunt when his hair is cut short...But as his mom...I so LOVE his hair cut nice and short...He is my handsome boy...maybe I will try to snap a picture..
Thank you ALL for being on Philip's team. There are days where I am spent and I know I just can not even manage the strength to pray...and yet I know each of you are lifting all of us up...
We are so very blessed in so many ways.
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12 comments:
We love you Amy!!! You never have to say any more to me than "I need your prayers and support right now" and you'll have it.
I am praying for Phillip - I can't imagine how hard this must be for all of you, watching your son (your other kids watching their big brother) have to go through such trials like this. You are an amazing mom - with some amazing kids....and you are all in my thoughts and prayers always (even the days when I disappear for a bit ;)
Amy~ I am so sorry that people are seriously giving you a hard time about that!! Everyone should think with their hearts and understand that you do what you can and if you decide to share with us what is going on then OK... I will keep you all in my prayers, I'm so sad for you that things have been going this way..
HUGS & PRAYERS!
Love you!
Always thankful for the update! Still praying for you all lots and lots. Love you!
Oh sweet woman... I don't know how you guys do it!
I am SO sorry that Philip had such a terrible seizure :( I pray that he never has to go through that again either.
I am praying for your strength and healing for all of you!! xo
Sending prayers and hugs for both you and Philip. I am so sorry that you are back to square one, step backwards are frustrating enough, but when it is your child's pain, then it must be so much more than frustrating. I will also be praying that your new treatments do the trick and you kick the cancer in the butt. Take care of yourself sweetie, don't worry about those that expect too much, just worry about you, Philip and your family...you owe no one, anything, you only owe the Lord to be true unto yourself.
{{Hugs}} Love you but you know that!
I'm with Liz - God knows what you need - you don't need to give details. We'll keep praying for the same things that we pray for all of our kids... that God would provide and heal and give us parents the wisdom in every decision.
I know what he means in not wanting short hair (they shaved half my head for my surgeries - and that is devastating to a girl with long hair), but I bet he looks so handsome. And those scars prove how amazing he is.
We love you guys. And I can't wait to wear my Courage t-shirt in support of Philip and Amy!
It has been so long since I heard anything about Philip or have been to your blog. Awhile ago I found myself thinking of him and wondering how things were going but couldn't remember how to get to your blog. I hope all is well please keep in touch.
Sweet Amy, please don't worry about what others want. You have so very much on your plate right now between your treatments and Philip's issues. We all, of course, don't expect you to drop your whatever and post about the details...all I want is for you to have some peace...and my thoughts and prayers are all about you daily!
I ♥ u!
Just wanted to send some bloggy hugs and let you know I'm thinking of you!
What you are dealing with is so difficult and yet you face it and keep fighting..just love that about you. Amy,this is supposed to be your soft place to land..your spot to post what you want, when you want and if you want and that should be respected. I appreciate you sharing so much of you and your family's life journey with us. It is an honor to be on Philip and your team. You both are heroes to me..praying for you all every day..much love!
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