Saturday, October 23, 2010

Post-Surgery Update


October 23, 2010  Post-Surgery Update (this will be a long post and somewhat detailed, so if you get queasy, it may be hard to read)

It’s hard to know where to begin – we have lots of information that we would like to share.

Let’s start with the day before her surgery.  Josie was in the hospital the day prior for a procedure called embolization.  Embolization is a process by which they take a micro fiber catheter and feed it to the specific artery that they want to “block” the blood flow.  The doctor that did the procedure was able to find a large artery that was feeding the tumor and was able to block it off.  Basically, this was a successful procedure.  The hope was that when Josie went to surgery, there would be less bleeding because this artery was blocked.

The day of surgery:  Josie went to an MRI first thing prior to surgery.  This was to help them during the surgery so they could tell from the images where they were and what was tumor and what was brain.  Later we were informed that the tumor had doubled in size since the last MRI, which was a little less than 4 weeks ago.  This made the tumor the same size again as when they first found it right after birth.  It is an extremely aggressive tumor.

Everything was going well during Josie’s surgery; every update seemed to be a fairly positive report.  One of the last updates, they said that she had a little bleeding, but they had gotten it under control and were continuing.  Then we were told that she was out of surgery – that she was fine and to wait in a little conference room for the doctor.  We thought it was odd that we got a conference room when most people were told right in the waiting room how things went for whomever they were waiting for.   But since they told us that she was fine, we did not anticipate what the doctor came in to tell us.  He sat down and looked weary and then told us that things did not go so well.  Josie started bleeding, they would get it under control and then she would start bleeding from somewhere else, they would get that one under control, but then she started bleeding from places they weren’t even touching.  She received 3 volumes of blood and then her body stopped coagulating (wouldn’t clot).  She was in serious condition.  They ended up leaving some cotton balls soaked with a clotting medicine inside and then closed up her head.  We were obviously devastated.  In fact the doctor was even shaken by the way things turned out since they had gone so well for the first 4 hours. 

They took Josie up to the PICU, where they worked for 1.5-2 hours trying to stabilize her, of which they were able to do.  Praise God.

Thursday morning:  Josie had another CT scan and then we talked with the doctor.  He was surprised that she was holding her own – said he thought maybe she was stronger than he gave her credit for.  The CT scan didn’t show any worse than right after surgery.  Josie even opened her eyes and looked at the doctor.  Earlier, she had moved her legs enough to kick her little blanket off.  The rest of the day she was pretty quiet – which is a good thing.

Thursday night:  Josie started having seizures again – not to be unexpected due to her trauma.  They are currently still trying to get these under control with meds. 

Friday morning:  Josie went for another MRI – this is for post-operative imaging.  During the MRI, the neurosurgeon came by to talk to Marc and me.  The news was quite sickening.  The part of the tumor that had grown back was checked by pathology and the new tissue is malignant.  The type of tumor she had at first, an astrocytoma can have multiple cell mutations in it.  When pathology checked it the first time, there were not indicators of malignant cells, but the part that was left in her brain from the first surgery must have either had those cells in it or they mutated since, which is a possibility.  

The first steps are to get Josie better from surgery, which at this point, she seems to be doing okay, although this morning they found that she has a urinary tract infection from her catheter.  They are on it though and are giving her antibiotics.  Stopping the seizures is another step they need to get under control. 

Next step…the doctors (neurosurgeon and the oncologist) are creating a plan for her.  At this point, they are planning on a new chemotherapy drug – used in infants.  Then they will develop a further plan from that stage. 

So…we wait and we pray.  This will be a long haul for our sweet baby Josie.  Not sure of the future, but glad that she is resting peacefully here in the hospital and also in the loving arms of Jesus.  My emotions have been pretty raw, but for the most part Marc and I are working through this moment by moment.  The girls (Reese & Eliza) are doing well; they are at Nana & Papa’s this weekend and having a great time I am sure.  Pray for them as they are going to get shuffled around a bit for a while. 

Thank you to all who have been and continue to pray for Josie – she needs it.  Thank you to all of our family and dear friends that have surrounded us – we need it.

Blessings,
Marc & Darcia



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