STABLE! STABLE! STABLE! That wonderful word that brings joy to our hearts. Yesterday was Carly's first MRI at Riley Children's Hospital in a year. If you remember from last year because her last MRI showed no new growth of tumor they told us we did not have to scan for another year. Well yesterday was that first scan since then and hearing those words from her Oncology doctor made yesterday worth it all. Carly was scheduled for a tilt-table test first thing in the morning and when we arrived they needed to get an IV in. After trying for almost 40 minutes, two nurses, and collapsing multiple veins in both hands and arms they decided to send us on down for her MRI which we were already running late for. After only about 15 minutes of Carr being in the scanner they sent someone to get me. When Carr has an MRI they first scan without adding in contrast or dye through her veins, then they stop and put in an IV to send constrast through. Well, you guessed it. As they tried to get the IV in they collapsed veins, caused one to bubble and by this time it had sent Carly into a seizure from all the stress. They had her out of the scanner by the time I got in there and had called for a stretcher. They had also called ER and her oncologist. I told them her seizure was brought on by the stress of the day and she needed a quiet darkened room. They did as I asked except they still wanted to have her evaluated by ER and I put my foot down and told them no. They were concerned because of how pale she was and very weak pulse. I explained the type of seizure she has and that if I honestly thought there was the need for it I would have her evaluated, but I have dealt with this for a few years now, many times by myself and I knew she would be ok in a short while other than being extremely tired and weak. Sure enough in just a few moments she came around, pulses, oxygen, heart rate all back to normal. They did decide that before starting the scan again they would get an IV in and pump some fluids in her. A nurse used a light held against Carr's arm in the dark to show what looked to be a strong vein and they were able to get the IV in. After about a half an hour of fluids they wheeled her back in to the scan room with 30 feet of tubing so they could keep the fluids going in while she was being scanned. Afterwards they had a wheelchair ready so we could go up to Oncology. By this time it was around 3:30 in the afternoon and we had arrived at 8:45 a.m. No breakfast (she wasn't to drink or eat before the tilt table test) or lunch. She had a horrible headache and just wanted to go home. After talking with Oncology and getting blood labs we were finally able to leave around 4:30. Construction rerouted us, rush hour traffic and a storm brewing we stopped at Applebees for dinner and some down time. I considered a hotel in Indy because we both were so wiped out, but after dinner and watching the storm pass we headed on home. 10 minutes after we were home she was in bed sound asleep. Today her arms and hands look like connect the dots before the dots are connected.
School is out for the year and graduation over for Carly's classmates. I will be very honest and say that it was a rough time for Carly and us. We are thrilled for her friends and wish them all the best. They deserve it. We were invited to many open houses, but Carr didn't feel up to going. I went to Erin's open house by myself. Erin had many pics of Carr and her on her boards from kindergarten through Prom. Two beautiful girls, then and now. It was an emotional moment for Claire and I as we talked as she loves Carr so much. It was Erin's special day and I wanted them to know how much I love her for being by Carr through the years and Claire, too as she is a wonderful friend to our family and esp. me. If you remember Claire often drove Carr and me to her radiation appts. and had lunch with her for us to eat on the way. She often wanted me to take a nap, but Claire's driving...:) We wanted nothing more than for Carly to walk across that stage with her friends, but over the course of the past four years we did what we had to do for her health and well being. Carly did not finish her classes for this last term. Lots of emotional and physical issues were going on for her. At this point we are not sure that she will finish traditional high school. Believe me, it is not a decision that was made lightly and I caused some people in the school system to not be too happy with me. As I expressed to them; until you are in our shoes and walk this path as much as you try to understand, you don't. Our school system has been wonderful these past few years and I will never forget all they have done to accommodate Carly and her special needs. We have the best teachers and administration in the world and I sincerely mean that. I tell people all the time that our school system went above and beyond from day one. As one chapter closes another is opening though we are not sure what it is.
We talked alot about different things yesterday at her Oncology appt. with her NP and doctor. Carly is not the only BT and cancer survivor dealing with issues. As I've said before these kids are the pioneers because they are surviving, but many short and long-term effects that are being documented for the ones that will follow. Hopefully, doctors are learning from our kids and finding ways to make it easier on others.
Thank you all for your prayers, cards, letters through the years. We appreciated it then and appreciate it now. We continue to take life one day at a time and try to make it the best that we know how. God is faithful and we continue to believe he has a plan for Carly's life. I have more to share about that, but will save it for another time.
