Tumor is growing...

September 24, 2010  growing…

It is with a heavy heart that I post an update for Josie.  This past Thursday, Josie had another MRI to check on the remaining portion of her tumor.  Unfortunately, her doctor told us that it is growing once again.  L  We were quite shocked to say the least.  My thoughts going into this check-up were that the tumor was either the same as the last time or my hope was that it would be smaller and going away.  I quickly remembered the nauseas feeling I had when we were first told that she had a brain tumor right after her birth, because I was once again feeling nauseated.  We were shown the images of her tumor and the doctor compared the before pictures and the after pictures.  I couldn’t believe what he was saying, yet I knew he was telling us the truth. 

Because the tumor is growing, Josie will be going in for her 3^rd brain surgery (her biopsy was an actual surgery) in 2-3 weeks from this post.  A date has not been set as our doctor wants to have the other pediatric brain surgeon in Josie’s surgery with him and that doctor is not back until next week to make the appointment. 

The doctor took Josie’s case to the “Tumor Board”, which is held every Friday.  This Tumor Board is made up of 30-40 doctors/PA’s and other specialists that make decisions on tough cases within the hospital.  They all agreed that this is the route that needs to be taken for Josie’s tumor. 

As for our other concern, her feeding tube, it has now become a lesser inconvenience in light of what she is up against.  She is still having reflux multiple times a day (went through 4 outfits today) and sometimes it really hurts her and other times, we don’t even realize she has something coming out of her mouth.  We did have an ultrasound of her stomach and everything is in working order according to that screening.  The doctor (neurodevelopment) has started Josie on a new medicine, but it doesn’t seem to be helping…yet.  

The one thing that we must do is to keep Josie healthy.  She has to be “sick free” in order to have the surgery.  We will now need to keep Josie home as much as possible.  This will be difficult, especially with kids in school now and germs are everywhere.  We have noticed that she is pulling at one ear and that is a concern as to whether or not she has an ear infection.  I will be calling her pediatrician on Monday if it continues. 

Tonight I am struggling with letting my baby go through this whole ordeal again, yet knowing that she must undergo it for healing to take place.  There is that fear of the unknown and what will happen during this surgery.  As I was praying over her tonight while I rocked her to sleep, I had to fight the urge to grasp at the situation and try and control it (which I can’t very well do anyway), or open my hands and give it to God.  I think a few of my fingers were pretty reluctant to let go.  My heart is still sad and grieving, but my heart and Josie are in a safer place – God’s hand.

Please pray with us as this rollercoaster starts up all over again.

Blessings,

Marc & Darcia