Although this has been a year of why and what ifs, heartaches and uncertainties, we have a lot to be thankful for.
For me, I am first and foremost thankful for my little girl and her amazing strength that is truly beyond her year. She has been such an inspiration this year, and I am so glad that she has such strength and can carry us with her on this journey.
I am also thankful for our friends and family who have helped us throughout this crazy, insane, nut-so year. And of course the new friends and family who we have met along the way, who have helped in more ways than we could have ever dreamed possible.
Last, but not least, I am thankful for the doctors, nurses, social workers, volunteers, and families who have worked so hard to help heal our family inside and out, physically and emotionally, individually and together. There is so much more to fighting cancer than curing the disease. I feel that we couldn't do it alone, and that no one should ever have to fight on their own.
We finally came home on Monday night. The week in the hospital was full of ups and downs. Saoirse had been doing better at the beginning of the week, but by the time we started her radiation, she was deteriorating quickly. She would keep her head down, and didn't want to be put down unless it was to sleep. We could see the tumors getting larger on her skull, and her eye was being pushed forward. ONe morning her eye was so swollen that she almost couldn't open it, and it was surrounded by a bruise that made it look like she had been in a schoolyard fight. She seemed to be having migraine like headaches, and didn't want to look up if there were lights on, and kept throwing up. She wanted so badly to eat, but she just couldn't keep things down without tons of pain medicine. Her MIBG showed the activity in her skull and also showed positive results in the bone marrow of her pelvis, legs and arms. Her disease had certainly progressed, and had not responded to her last round of chemotherapy. She is officially a relapse patient, and now it's a game of trying to get it stable and under control. There is still the possibility of cure, but the chances drop drastically when it comes back. But there are a lot of new therapies out there, and there are so many ways to keep her disease under control, and someday they will figure it out, so there is always hope.
The first day of radiation was totally nerve wracking. The first day was full brain radiation, as the plan for the brain sparing would not be done so quickly (although the original estimate of Monday was moved up to Friday!). This was new territory to us, and I was nervous about how she would feel after. Surprisingly it didn't seem to phase her much. She was still feeling pretty awful and in tons of pain, and we were just trying to find something to make her more comfortable. Friday they stared the brain sparing plan, and even though the morning session was delayed to re-set the machine, things went pretty smoothly. The amount of time that she can't eat in between seems to be the hardest part of the twice a day radiation. We were worried about nutrition, so we talked to the nutritionist and she brought us some things that will help out. She has some juices that have added protein that count as clear liquids that Saoirse can drink in between sessions. This is a godsend since she spends the majority of the day not taking in any solid food. She also gave us some protein powder to add to her food, because all she wanted to eat was applesauce. By the end of Friday we were hoping that she would turn around for the weekend. WE were going to try and go home Saturday, but by the time it arrived, we weren't sure we wanted to take her home yet.
Saturday morning was still bad. Saoirse seemed to be in so much pain, and even the new pain medication didn't seem to be helping that much. I was worried that a tumor was pushing on her brain, causing her to throw up. The doctors were concerned that she had some swelling or even some fluid in her brain causing the increased pressure. They ordered a CT scan. Thankfully, it did not show any fluid, and there were no clots. It did show how much bigger the tumors had grown in a week, and that her brain was being irritated by the tumors on the underside of her skull. The doctors decided to change her steroid to one that would help reduce the swelling behind her eye as well as any swelling caused by the irritation. After one dose, Saoirse was like a new kid. She started smiling, and wanted to eat. She kept down her food, and she wanted ton interact with other people. She even wanted to walk down the hallway before bed. It was incredible. We had been so worried that she had taken a turn for the worst, but it seems that she was just having so much pressure from the swelling, that she couldn't overcome the pain. By Sunday, she was like herself. We spent a lot of time out and about, playing on the playground, running around the garden, and dancing to the juke box. She ate like a horse, and kept everything down. We were glad to have our baby back, and so glad to see that she was happy again. It makes it easier to fight for her.
Monday we had the double radiation, and then we came home. We were so excited to go, that the day kind of went nuts. Mike had to get the house ready, so I had her by myself all morning. We did a lot of walking around, and we took a trip down to the garden and juke box to play. After her nap, however, she was upset about the fact that she couldn't eat anything. She was feeling so much better, and had spent so many days not eating much, that she was starving. While Mike took her to the evening radiation, I packed up our room. By the time they came back, everything was packed and all we had to do was sign paperwork. That paperwork took 2 hours to get to us! A combination of shift change, medicine changes, and computer problems made it so that we were there until 8:30 at night. It was so frustrating, but we were so glad to be going home. With the late arrival, Saoirse was starving, and she ate some dinner and played with her toys and the dog before going to bed at almost 10. It made it hard to get up the next day, but we managed somehow. Tuesday and Wednesday we traveled in as outpatient to have her radiation and chemo, but that's a story for another day. Right now, we are just glad to be home.