March 21, 2009 
What amazing strength this family is displaying. Your prayers are greatly needed for them as this season of their life continues to bring forth challenge after challenge. I am reminded of the words of our mighty Savior in his final hours:" God, I find your plan heavy to be borne. Let this cup pass from me. But if I must drink the cup, let me drink it to the dregs. I find your plans heavy, but if I must bear them, strengthen me to carry everything." How my prayer is that this family truly cling to the truth of God's Word...And we know that in all things God works for the good of those who love him,who have been called according to his purpose. Romans 8:28. Then when life becomes more than they can carry that they will find refugee in the loving arms of our Savior. Here are 3 things you can pray for right now:1. Philip being weened off of meds.
2. Amy as she receives treatments for her cancer.
3. Jim will continue to have job security.
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WEDNESDAY, MARCH 18, 2009
First let me answer this here. I have had a good number of emails asking... Our family blog link is..
I use my blog to talk about a mixture of everyday family stuff ...including my cancer and treatments...
Today has been another rough day for Philip. Weening off some of his meds is almost cruel it seems. He and I just spent some time talking about what night meds for him to take to try to give him some pain relief for tonight. I understand why he needs to ween off the meds but it is just hard on him and very painful. We are always watching close for seizures since some of his meds are related to that. We need to really NOT get those started where we can not control them
One more issue..Philip fell the other day and cut his foot . It is in a bad place and slow to heal. Please say a prayer that it can start to heal and we do not need to have anything done with it. Any type of infection is harder for Philip to fight right now.
We are doing the work up for Philip's first stage of his operation. There are two important things that HAVE to be done before we can get it done. He has to have medical clearance. Not the easiest thing but we will get it. And he has to have a psych consult due to hos extreme this operation is. I am working on getting that done also. Alot to get done..not a lot of time. But we will get it done. Whatever it takes.
We are looking at the first stage of the operation in a matter of days..maybe..
Today was heartbreaking for me ..Philip never really complains about too much or talks about the 'what if's. But today he told me he was worried about his future. He talked , I listened and inside my heart broke. What do you do when you can not pick them up and rock them? So instead I said..well you know I will do whatever it takes to make sure you are okay and take care of you ALWAYS.
I wish I knew what that was. Until then I will pray and hold on to the faith that GOD has always held Philip in the palm of his hand and taken care of him.
We are so blessed.
Friday, March 13, 2009
Philip's Operation...odds and ends
I wanted to give you some details about Philip's operation. He will be having two. One will be to place everything for a 10 day trail period to make sure he can tolerate the medications and the increase of fluid in the brain. Then he will have another operation to place everything permanent. We are waiting now for a call from the hospital for a date for the first date.
A few details about the operation that the Dr explained to us. They will be in the spine and the brain. One thing that could be a issue is the extra fluid from the medications going in the CSF area of the brain. Since Philip has a issue with the brain already and the ventricles and shunts..the extra fluid could be a problem. But for now we will go with a positive outlook. Okay for one quick sec let me say one negative...cause I can here..right? If the extra fluid from the meds is a issue...then the operation will not work and will have to be undone. So this is a area that is really important...Okay now I am back to the positive outlook...see how fast I went back to that?
The other issue is having foregin objects in his body. Philip already has antibody issues from having shunts and shunt infections. So we will need to find a balance to adding the new hardware. If it does get infected it would be a infection in the spine and the brain area which would mean the shunts would have to be dealt with including the dreaded hardware that is brain stem. I have to just say I hate the hardware in the brain stem..always have..always will.
Shunt infections are really bad and really scary . Philip came very close to dying not long ago from one. I have never been so scared in my whole life. Wanna know something? It changed me. It scared me. It made me really scared. It made me anxious and worried and just scared . Sometimes I still get that feeling. More often then I like to admit. I trust in God. he has been so faithful to his love for Philip. But I worry that his plan is going to be something that I just can not let me mine think about. That was hard to admit . But I am glad I did. It feels good to say it to someone.
And you guys are the best SOMEONES ever. Have I told you that lately?
Now there are some wonderful things about this whole operation..well not the operation but about the fact that he will have this done.
There are some new medications we can try to help Philip with his tone from his stroke. He has never been able to try this before because he has not had the pump. He also can use a new medication to try to help with the burning pain he has. Both of these are big pluses , and we are excited.
Getting to the point to do this operation has not been easy. The risk are many. But in truth we have gotten to a place of not knowing what else to do. I have full faith with the Dr. I also know that we did not jump into this without waiting , trying other options, and also praying for a clear path. So now we will move forward.
One thing I wanted to add is ..Philip will be weening off some of his meds. This will be a hard process for him. Not only his pain meds. But Philip uses some seizure meds to control his pain. He needs to be at a lower level for many of these meds before the operation. So during this time period we need to be aggressive with weening down . This can lead to some medical issues including pain and increase in seizures. I hope that this is not the case with Philip and this will go smooth .
I will let you know the minute we find out the dates for the operations.
SUNDAY, MAY 06, 2007
Part One
A lot of things have happened this past two weeks. I thought it might be good for me to give a little history.
On April 30th Philip went to FL Hospital to have his shunt revised. What that means is they did some work on his shunt. Over the past few months Philip had not been feeling well . He would have severe headaches and not really able to enjoy life. He spent most days in bed with headaches and missed church events and school. After visit to our local ER we were sent back to the Nuero surgeons to discuss what the problem was and how to solve it.
Once the scans were looked at there was something found that shocked us all. When Philip was 6 weeks old he had a sub arachnoid cyst that almost caused him his life. He had two major operations to deal with the cyst. The last operation was over 13 hrs long and resulted in the DR telling us Philip may not make it through the night. The Dr told us that there was so much scar tissue that he had to call in another surgeon to help him. He also told us it was like a jungle and he had no idea what he might of cut trying to get to the cyst. The DR made it clear that if Philip lived he would not be a fuctionable person. For months Philip held on and not only did he survive but he got to come home. During that time period Philip was blind for 13 days. The Dr did scans to make sure he had not cut through the optic nerve. After the swelling went down he got his vision back. Philip has suffered a stroke and had to learn how to suck and swallow again. It was a very long scary time for us. A quote the Dr said that has haunted me is....It would take a person holding a gun to my head to have me go back to the cyst area".
Years later we found a wonderful pediatric Nuero Suregon. After a different operation years later to remove a old shunt in the cyst area of the arachnoid layer of the brain . He was unable to get the old cather out of that area. He told us ...One day I may have to go after it and play Miracle worker but not today. That was over 10 years ago. The cather is in bedded in scar tissue and is laying in blood vessels in the brain. It is on the Brain stem.
This leads us to the shocking news on his MRI. The cyst has come back.
SUNDAY, MAY 06, 2007
Part two
On the MRI it was found that Philip not only had this dreaded arachnoid cyst back but also he had a condition called slit ventricle syndrome ( this is applied to a small subset of these shunt-dependent children who develop disabling chronic or recurring headaches associated with signs and symptoms of increased ICP and persistent small or slit-like ventricles by CT.) It was decided to revise Philip's shunt and add a new valve . This would be able to control his pressures better. We decided this was the first step to helping Philip become stronger and feel better. This operation was done April 30th.
A`decision was made to let Philip heal from his original April 30th operation and see what and how the arachnoid cyst would effect his health. We had planned to get his medical records together and seek some sec and third opinions.
April 25th Philip woke up and complained of a severe stomach ache. This concerned me because other then his nuero issues Philip is never really sick. After a trip to the local ER with a temp and elevated Blood count we were sent home and told that he had a viruis. The next day he seemed worse and once again we were sent home from the ER. The next day our Peds Dr sent us to Arnold Plamer for the nuero Dr to take a look at Philip. After a shunt tap it was found that Philip had a serious shunt infection. The infection meant that the fluid that runs in the brain and spine was infected. Philip went for emergency surgery the next morning to remove his shunt tubing and place a EVD. This is a shunt tube from the ventricle in the brain runs out to a pump on the outside of the head to pump out the infected fluid,. Philip has this fluid tested in cultures every morning to check for infection. He also had a operation to place a central line. The first medication Rocephin and Vanco IV antibiotics were not the right one, the bacteria was resistant to these. They have changed his meds again. He will go back to the OR when it is safe to replace the shunt.
SUNDAY, MAY 06, 2007
Part three
The shunt that will be replaced soon is to treat his secondary condition Pseudo tumor. When Philip was around 5 he had a appt with his nuero Dr and was found that he had papilledema in his right eye. The condition was treated with spinal taps to drain off excess fluid and meds. After over 20 spinal taps it was decided that he would need a shunt. The first shunt he had to treat this was a Lumbar Subcutaneous shunt. Soon after this was placed Philip had numbness in his legs. It was decided to replace the shunt with a VP shunt. During removal of the LP shunt a piece of the shunt broke off and Philip needed spine surgery to get the piece out. For Philip the VP shunt was a much better choice. Up until April 30th we have had no issues or operations on the shunt.
All of this info leads us to now. Philip now has a shunt infection most likely due to his April 30th revision. The other bigger concern old cather in the arachnoid layer is a problem for us. When you have a shunt infection ALL hardware needs to be removed. If not bacteria can hide and re attack the new shunt. The problem we have is...the place this old cather is. It is in a very dangerous place. It is deep in his brain stem and is surrounded by blood vessels. The nuero Dr are spending a lot of time looking at films to decide what we need to do.
The thought of damn if we do and damn if we do not is what weighs on us tonight. There is not a easy answer to this. It is such a odd feeling that something that was from so long ago is now so "in our face' to deal with. The old thoughts of Miracle worker and guns to the head reminds me that this is a tricky place and the decision is hard one to make.
The dr will speak more with us tonight about our best decissions.
We are waiting on some results. Philip started with a temp last night so they re tested his fluid and his central line.
Prayer from The Christ of Easter by Calvin Miller
We cannot fix all circumstance or dry all tears. But not to care is a great sin. Open my eyes to those around me who are in need of your tender love...and could perhaps feel it in my caring embrace. Amen
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