Tuesday, February 16, 2010

Last Week Recap

First, I just want to say that I am so glad to be home and I am so glad that Jason is home! Our family is back together again. At one point, we were spread out between 3 states. That is not the way it should be! Now that he is home, I feel like everything can start to get back to normal.

I think I will recap the week by going day by day.

My stepdad drove Abby and I to Memphis Monday afternoon because of the bad weather. I could have made it on my own but it was nice to sit back and relax and let someone else worry about the road conditions. When we got to Memphis I was really glad he drove because it was slick there. I wasn't very happy about being there without a vehicle but I tried to tell myself that we would be just fine. Abby was excited to be there and to have me all to herself. She was literally bouncing off the walls (and the beds). We didn't do much that evening-ate at the cafeteria, watched a movie, and unpacked our stuff.


Road conditions were much worse on Tuesday so I was really glad we went early. Abby had a good time tromping through the snow and sliding on the ice. We started our appts with a blood draw-her least favorite thing. I didn't tell her ahead of time about it because I knew she would get upset. She figured out really fast what we were doing. She always gets her blood drawn at the same place so when we got back to the room, she started getting nervous. She was very brave though and it only took 3 of us to hold her still. She cried but didn't kick or scream. I was very proud of her for being so big and brave! Next we had to be cleared for our MRI. We went to see our regular nurse and neuro-oncologist. They just make sure she is healthy enough for sedation. I also get to ask any questions I might have. No new information this time. We also met with the anesthesia nurse to review her chart. Between visits, Abby got to meet a new friend. His name was Kicker and he had surgery recently. His owner showed us where his IV had been. Abby loved him! I think she loved him even more after she found out he had an IV! He was the sweetest dog, so laid back and gentle. He put his paw on her leg while she was brushing him-so precious!

That night they had Corky's BBQ catered to the Grizzlies House where we stay. Different groups in Memphis volunteer to serve dinner there about once a week. It was so nice to get a break from the cafeteria food! They had some Valentines to make and a lot of candy to eat. Jason flew in to Memphis that night too. He got very lucky and was able to ride on a shuttle to St Jude instead of taking a taxi. Saved us $30! Abby and I both were so glad to see him!

My anxiety over the MRI was really growing at this point. I hardly slept that night and found myself almost hyperventilating. Abby kept asking how many hours until the MRI. I guess she was feeling anxious too!

Luckily the MRI started early. We had to be there at 7:15 and it didn't take long for her to get called back. Our preacher, Bro Curt and his wife had come to be with us that morning. Abby was excited to them. I had a talk with her about putting on the gown and being a sweet girl ahead of time so she didn't fight me about the gown this time. She let me know that she didn't want to put it on though. We got back to the holding room and I could tell she was nervous. The nurses noticed too and gave her something to help her relax. It really helped. She started smiling again after that kicked in. They let her pick out her flavor for the mask and in no time she was asleep. I prayed over her and kissed her and left. It is always so hard to leave her. I almost panic every time. They started her IV after she was asleep. I am so glad we started doing that, it helps so much. The time passed quickly and they called me back to recovery soon. She was still asleep so I sat and watched her beautiful little face. The anxiety medicine she had taken made her a little loopy after she woke up. She was very smiley and chatty. She kept saying she was tired (in a very comical way that I just can't explain) but then would sit up and keep on talking. The hospital was having a Valentine carnival so we headed to it after she seemed more alert and clear headed. The carnival was sponsored by Target-it was awesome. She got a t shirt, gift card, goodie bag, and book. They had games, face painting, crafts, live music, and food. She really had a good time. Here she is decorating her mailbox.

I was about to go crazy waiting for the doctor to call with the results. We kept our phones very close and jumped every time they rang. We decided to ride the trolley while we waited to help pass the time. Abby loves the trolley! There is a trolley stop just 2 blocks from St Jude so we ride it every time we go. It was a cold walk to the stop but worth it. We ate at Gus's Famous Fried Chicken. The chicken was too spicy for Abby but Jason and I liked it. Here is a picture of her and her daddy on the trolley.

We got back to the Grizzlies House at 5 and I couldn't wait any more. I called our nurse and she delivered the great news-"it appears from the preliminary results that the tumor has not changed". Jason and I both spent a lot of time on our phones calling everyone after that. Relief is the best word to describe how I felt. I wasn't really emotional this time. I think I was still too bound up from anxiety and stress. I slept like a baby that night!

We only had one appt on Thursday so we slept late and took our time getting around. Jason's mom had Lyla at this point and decided to drive down to Memphis with her. I was so glad, I had missed her so much. There was a Disney star at St Jude that morning who was going to sing some songs so we listened to her while we waited for Barb and Lyla. She was on the Hotel for Dogs movie and she was a great singer! Lyla got there for the last few songs and she danced like nobody was watching! It was so funny!

We met with the neurologist-nothing new really. The decrease in her seizure med is official. She will have an EEG next visit. I asked whether she would eventually come off her med and the short answer is no, because of the area of the brain where the tumor is. Even small seizures can cause brain damage if left untreated so it is better to be safe. Her med is very mild, has no drug interaction, so it is best to leave her on it, probably forever.

After our appt, we decided to go to the Children's Museum of Memphis. We finally had a vehicle and I really wanted to get off St Jude property! The girls had a really good time there. The real but tiny supermarket was the best!
We ate at Osaka Japanese Restaurant afterwards-Lyla hated it! The chef, the fire, the banging of utensils, all terrified her! The food was great though. Then it was time to take Jason back to the airport. We all hated to see him go.

We got up and tried to get everything packed up and ready to go home! I met with our oncologist to look at the MRI. I haven't viewed one in about 6 months so I was glad to see it again. I have such mixed emotions when I see her scans. On one hand, it is depressing-I hate seeing all that tumor and know that it is just waiting to wreak havoc on her. But on the other hand, it is uplifting-all that tumor and no major side effects, no treatment. My mind goes back to that trip to MD Anderson when the neurosurgeon told us that she had very little time left on this earth because of the size and type of her tumor. But God said otherwise! The MRI always reminds me of God's mighty power and His faithfulness to our prayers. That tumor is being quiet because He is in control. There will probably be a day when it will grow but that won't mean that God stopped listening. It just means that He is in control and that His will is being done.

Next up was our eye appt. They dilated her eyes this time. There was absolutely no change to her vision. The tumor is very close to her optic nerve so the oncologist feels like a vision change will occur if the tumor grows. Even though I had seen the MRI, it felt good to hear that her vision is the same too.

After that we loaded up and left town. We have freedom for another 3 months, praise God!

Jason got home yesterday and things aren't quite back to normal yet. We are both very tired from such a long, stressful week. The girls are tired of being cooped up inside and our house is a mess. I should probably be stressed out over all that but I am not. I am glad I am home, I am glad Jason is home, I am glad that I won't be going back to St Jude for another 3 months, I am glad that we are not there right now getting a port placed and starting chemo. I am glad that I get 3 more months to enjoy our life. And I plan to do better about enjoying our life. I am going to try to let go of some of my fears and anxieties and worries. I am going to try to relax and "be still and know that He is God" and let Him handle it. Not easy for me to do, but I am going to try.

Please continue to pray for Abby and our whole family. We need it more than I can express!
One more thing, as you can tell from this post, St Jude is amazing! Even though we had no vehicle, all our needs were provided by them. We had plenty of food and things to do. There were movies to "rent" and tons of activities to keep Abby occupied. This is the longest we have stayed since our first trip. I would have gone crazy if it weren't for all the great things they had going on for the families. They should be a model for all other hospitals of how to care for your patients in every way! If any of you donate money to them, I will be the first to say it is worth every penny you send. They take care of their families!

1 comment:

  1. Morgan,

    I am so happy your visit went so incredibly well. Glad you have three months before you have to do it again.

    talk to you soon,