While sitting in the waiting room with Elli’s parents and friends I decided to inform all of the for her about her progress. This is the biggest mile marker of them all. Welcome to April 16, 2015.
4:30 a.m. – ALARM
When the alarm went off I was awakened by a big hug. I held her for what felt like forever wondering when would be the next time she would feel well enough to get out of bed on her own. I’m a pretty light sleeper and to my surprise, she made it through the night without tossing and turning. I never really thought about how this day would go. With very little mental preparation and little conversation I got ready, packed her bags, and got in the car with her family to head to the James Cancer Hospital.
6:15 a.m. – ARRIVAL
We arrived at the James Cancer Hospital and headed up to our separate waiting area. All 16 of us settled into what would be our new home for potentially the next 10+ hours. The nurse took Elli back to prep for surgery. Her parents were able to head back with her and be a part of the whole pre-operation process which was not only the best for Elli but also great for her mother, easing the anxiety and nerves. While back in the pre-op room, Elli was cared for by the best nurse, Nurse Karen. This angel could not have done a better job keeping the vibes of the surgery positive and explaining each and every step that she would go through before the operation. She explained how the surgery process would go while she was under, what would happen when she woke up, and what to expect as she began recovery. 2 by 2 the rest of the family was escorted back to wish her the best and continue to show the support that has poured in from the first day she was diagnosed. Her parents and brothers saw her at 8:15 and then she was off to surgery to get fixed! Now its time to wait for updates which we were told would come every 2 hours.
9:48 a.m. – FIRST REPORT
If you didn’t already know, Elli’s mother works at the James Cancer Hospital. So as we start the hurry up and wait game, her co-workers are coming in one by one to wish the family well and show their support. Every time someone would come in the door, we would all look up to see what the first report would be on the progress of surgery. At 9:48 the nurse came in to say they were still “positioning” her for surgery.
10:10 a.m. – INCISION
Shortly after, the first incision was made.
12:25 p.m. – REALITY CHECK
Dr. Prevedello, the neurological oncologist, finally came in after what felt like forever and brought some shocking news. During the operation, the doctors sent shocks to her wrists to see how her brain reacted. Unfortunately, when a shock was sent the doctors saw a significant drop in brain wave activity and had to stop the procedure immediately. At this moment they began to question whether or not the operation was the best for Elli. They repositioned her body and instantly those brain waves came back fully which allowed them to decide to keep going with the procedure. In reaction to this minor setback, the doctors decided to monitor all brain activity for the rest of the surgery.
While it was described to us as a minor hiccup in the procedure, we thought it to be more serious. In reality, this information just caused the surgeons to be a little more cautious. Learning that they had to alter the initial game plan changed the mood of our waiting area completely. We’ve done everything possible to keep our minds off of the situation but this mishap has brought our attentions right back to the severity of the operation. A 12:30 celebration of Mass at The James’ chapel was a great idea. Minds began to ease and nerves began to settle, especially for Paul and Kristin.
2:02 p.m. – RESECTION PROCESS
Update is positive. Now that they have repositioned her, her brain waves are stable and they are proceeding along with the resection of the tumor (whatever that means…). Things are going “well.”
4:10 p.m. – FAITH
While we watch the nurse walk down the hall towards us, a doctor enters the room of another family awaiting an update. The nurse reports to us that they have started to work on the tumor around Elli’s carotid artery and that things are progressing as planned. Unfortunately, it was very apparent that the family down the hall did not receive good news. The doctor left very quietly and the family left hugging and in tears.
6:25 p.m. – ROUTINE
“All is well. The doctors are making continued progress.”
7:05 p.m. – GOD IS GOOD
Two out of three doctors came in and began to explain all the work they have done so far. There is no way to put this into a great colorful synergetic paragraph with the emotions I’m feeling right now so I’m just going to list everything I know.
-So far the 2 doctors have taken out 95% of what appeared to be a baseball sized tumor. They were surprised in finding that this paraganglioma tumor, which is typically “soft and squishy,” was very tough and firm and was described to us as “leathery.”
-The tumor has been growing in her skull for 8-15 years and in doing so, has engulfed nerves 9-12. The only way to remove the tumor included removing the nerves as well. The doctors don’t know whether or not those nerves were already accounted for in her compensation of the tumor or if removing them will cause further complications.
– When removing the tumor, they had to adjust the lower end of the facial nerve which will cause a lot of pain in recovery and also loss of mobility on the right side of her face but Dr. Old believes that she will be able to recover completely from those difficulties.
– The infamous carotid artery. He explained that the external portion of the carotid artery was completely engulfed and feeding this tumor substantially which caused the thick, leather-like feel of the tumor. The job of the external portion of the carotid is to supply blood to the tongue, vocal chords, face, mouth, etc. which explains the loss of these functions on her right side. The only blood flow that the brain received came from the internal portion which was easily pinched with the movement of her neck which explained the bad feelings she felt before. When removing the tumor, they clamped the the whole carotid and removed the part of the tumor that included the external carotid. Then when they released the clamp, the internal portion took all the blood flow and ran perfectly fine to her brain. Success! No bypass is needed so far.
– 5%. The remaining 5% of the tumor is embedded deep into her ear bones which will cause for a long removal process from the ear oncologist. He is currently drilling into this part of the tumor in attempt to remove it completely without touching the remaining nerves, jugular and salvaged carotid. This will be tough but Dr. Old ensured us that it is completely possible and everything that this surgeon can do reduce 5% to nothing will be done. The ultimate goal obviously is absolutely no more tumor.
– Cancer? Without being direct, Dr. Old explained that the concerned lymph nodes were removed and seemed to be as large as expected. We will not have any sure answers until pathology gets back to us within the next week.
– This experience was filled with love, tears, joy, and most of all God. There are no words to explain the vibes of this waiting room right now. The fear is replaced with hope. The isolations are replaced with hugs. The silence is replaced with gratitude. The whispering is replaced with prayer. God is good and the finish line is near.
I’m sorry that it took so long to get to the blog. The night got a bit overwehlming. The doctor informed us that the operation is finally over. The hands of God replaced the hands of the doctors and was able to remove all of the tumor successfully. The power of prayer is indescribable.
While finishing up the post evaluation of the procedure, the doctors noticed that Elli was not able to move her left leg from the knee down. My heart dropped hearing this news. For the first time all day I noticed a change in one out of the doctor. He was very concerned which in turn made us all very worried. She is going to have to do some tests through the night to watch the functions of that left leg. May the lord bring this beautiful girl back to 100% normality.
Other than a few minor detours on the trip…
Elli beat Thursday.