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.