With Us Wherever We Go: August 30--A look back at Reese's surgery day

A lot of times a child with a brain tumor has a seizure or becomes unresponsive, etc and this leads to the diagnosis. Very fortunately, Reese was still stable at the time she was diagnosed and admitted. They were able to give her steroids to cut down swelling and make the tumor easier to get out. They were able to map out their plan for resection and have the best surgical team available first thing in the morning on Tuesday so that everyone was fresh. I am very thankful for this and thankful for ALL those years of school which tipped us off a little bit early. Early the morning of the surgery, her heart rate started getting slower and she would not roll over anymore. She cried when she was held upright because her head hurt so much. If we had not gotten in over the weekend, she might have been having emergency surgery on Tuesday instead of a carefully planned one. It was also a tiny bit easier handing her over into the arms of an OR nurse to be taken to surgery because I knew she was getting sicker.

Her surgery was August 30th and lasted for 8 or 9 hours. Waiting in the waiting room was pure torture. Lots of family and friends were there to support and distract us. Every hour we received an update from a nurse, but it was so hard not REALLY knowing what was going on in the OR. ( I was wearing a bright peach shirt that day--I told Brian that people couldn't tell someone wearing bright colors bad news...) After her surgery, we were exhausted and waited for the surgeon to talk to us. He explained that a lot of blood was lost. Usually, they would have stopped once she had lost 600mL of blood (one whole blood volume for her aka all of the blood that someone her size has). However, they had to keep going because they only had 80% of the tumor out and the tumor itself was causing her to bleed more. They chose to give her more transfusions and press on in hopes of stabilizing the blood loss. Fortunately, Reese tolerated this. We are so thankful that he got at least 98% of the tumor. This was crucial for Reese to be in a good place for chemotherapy/future therapies. That night was exhausting as we sent Philip home to sleep in a different room than his twin for the first time EVER. I slept in Reese's ICU room and Brian slept in the Ronald McDonald house downstairs (only 1 parent allowed in room). 24 hours after surgery, we got to see and hold Reese after she was extubated and she looked great. However, later that night, she developed seizures that were poorly responsive to conservative seizure meds. The 2 day expected ICU stay stretched into 8 days as Reese had to be put back on the ventilator due to the high doses of seizure meds and their sedative effect. Eventually, the meds were weaned enough to extubate and we went to a regular floor and spent a total of 25 days in the hospital. Over those weeks, Reese had other surgeries to have a gtube and central line placed and a plan was developed for her chemotherapy. There were many bumps in the road and as the adrenaline of the initial few days wore off, there were many hard days and lots of exhaustion.

During Reese's months of inpatient chemotherapy, she was on the 5th floor Heme/Onc unit. The surgery waiting room is on the 3rd floor and is visible from the glass elevator that I took down to the first floor numerous times a day. I always felt for those families that stayed there for longer than a 2 hr "quick procedure" or the ones that looked like they were "camping out" there. If there was ever a family sitting there after 6 or 7pm or in the middle of the night, I especially felt for them as these usually indicate emergency situations or looong surgeries. I prayed quickly for them as I rode down unnoticed.

After spending a LOT of time in the hospital over the past 10 years (due to my profession), I definitely have a different perspective now. I have always "felt" for those I cared for, but there is certainly more insight and depth to that now.

Thanks to all who have prayed for Reese so many many days and nights. Whew! Thanks for reading her story and supporting us. In my mind, her surgery date was Day 1 of physically fighting her cancer. I don't want to get ahead of myself, but I feel like this is a fresh year to relive and re-experience firsts. Reese's first Labor Day, Thanksgiving, Christmas and birthday were lived while on treatment. She was bald, weak and was limited in what she could do. Hoping for a re-do this year of lots of moments though we are thankful that it worked out for Reese to be home on Thanskgiving, Christmas and her birthday last year (just the way the chemo schedule fell).

I will probably post at least one more time in the next few weeks. I certainly hope that these aren't too much of a downer for those who are reading. I really want Reese and Charlotte and Philip to one day look back and know what happened. I want others who have prayed diligently, brought us meals, sent gift cards, kept our children, etc to know where we were and how much we needed and appreciated what they did.

The grandmothers in the waiting room

You might notice a theme with Philip
in these photos. One could argue that he missed
his sister but I think he was taking advantage
of all the people who needed someone to snuggle.