#5 appointment on maintenance=Avascular necrosis

I'm so not a writer and often I go on and on and on. lol...but I really want Avery to have a record of her cancer journey so I've got to get better at updating. If anyone reads this. I really want to make a video of Avery's journey this last year or pictures to go with the song that was written about Avery from the song of love foundation,  but I don't know how. If someone can do it, help me or teach me that would be great!!

Last night, we got home from our 5th appointment since we started maintenance therapy. We first had a scheduled MRI to check to see if the steroids she takes every month has been causing bone damage. She has horrible pain while on steroids and for several days after and periodically throughout the rest of the month. The doctor had scheduled her to be sedated. When the imaging department called to give me instructions and ask questions about Avery I asked if we could try without sedation. She has a hard time waking up, hates the way it makes her feel, it gives her headaches and sometimes she throws up afterwards. I got all the details about the MRI, how much of her body goes into the tube, what it looks like, if we could stay or not, how long she'd have to hold still, if she could watch a movie, etc. She likes to know exactly what to expect. I told her she could decide if she wanted to be sedated or not. I was in favor of the NOT. We still followed the no eating and drinking rules in case she changed her mind. As we were driving to the hospital she must have started thinking about the hospital because she started puking and dry heaving. I feel so bad she worries so much. I encouraged her to talk to us about what was bothering her and really she didn't need to worry it wasn't going to be too hard and I knew she could do it. I asked if she wanted to say a prayer and ask Heavenly Father to help her relax and not to worry. She quickly agreed. She didn't throw up again and her nerves were so much better. I was so proud of her as we had to go through all the steps to get ready for the MRI.  I couldn't be by her side or even in the room, as they prepped her for the MRI to tell her it would be alright. She had a microphone on so the radiologist could talk to her and she could talk back. She told me after, I kept saying Mom in the microphone, but you couldn't hear me.The radiologist said she did awesome and she really did. She was so brave and was able to  hold still for 45 minutes. He was so nice and let her look at the images of her bones on the computer which is something she wanted to do. We were done in record time and still had 2 hours until our appointment at clinic. Surprisingly Avery wanted to stay and do crafts while we waited, which never happens. We told her we could leave the hospital and go get her something to eat, but she choose to stay. That was a big step for her. They ended up getting up back in clinic early. When I was asking her Dr. what bone damage looked like. She pulled up the images and said this doesn't look right, but I want to wait until the report from the radiologist comes back. Shortly after she came back in our room and said she does have AVN (Avascular necrosis) caused by the steroids in her upper legs. This is a disease caused by temporary or permanent loss of blood supply to the bone. Without blood, the bone tissue dies which may cause the bone to collapse. Kind-of a sick feeling. This is not caused by the cancer, but my the medicine they use to cure the cancer. So many side effects to these medicines. And this is why we need more research for better treatment options. (I better not get into that right now) Her Dr. said she thinks we caught it early enough and the bones will hopefully repair themselves. I asked my usual...loads of questions. On one hand, it's great not taking steroids. That's a huge thing for us to be off of them as far as causing pain for Avery and making our life easier, however a little scary because they work with the chemo to keep the cancer cells away.  Her Doctor must be getting to know me, because she said I know you're nervous about her not taking them at all, but if she continues her bone damage will be worse and of course we don't want that. So she will no longer takes any steroids for the reminder of her treatments. That really it so big for us not to be on steroids and we are praying, praying that the damage can heal. We will go to a bone doctor next trip to talk further about it. Of course now I'm home I have a lot more questions about how severe the damage was. Her doctor didn't seem that worried about it, but I know of two other kids that have AVN and have had to have surgery and have effects and damage that has not healed. One mom said they've been off treatments for 3 years and are still reminded of cancer everyday because of how bad her daughters AVN is. Not going to lie it freaks me out, but I've got to quit worrying so much my blood pressure is through the roof. I'm trying to remember have Faith not Fear.

 First time we've ever heard the bell ring at clinic. We can't wait until the day when treatments are finished and Avery gets to ring the bell.

 Avery and her dad giving me their dirty looks. They are so tough!

Love, Love, Love it. Avery joined t-ball and we didn't know if she'd be able to play especially the week to two during the steroids. This is the part I love. Avery said, "Mom I can even run, because I'm not on those steroids anymore." She had the biggest smile on her face.  Now we don't have to worry about the steroid pain. Last year we let her play in her last game, but she was just coming off of her month long steroid and she couldn't run to the bases at all and of course had the swollen steroid face. It is truly amazing to see how far she has came since last May. So glad were not there anymore. Those were not good times. She hit the ball awesome and played first for an inning. I was a little worried she'd get hit by a ball, because she wasn't always paying attention when they would throw the ball to her.

I debated whether to add the t-ball picture from last year (last year I was fighting back the tears during the one game she played in) but it does show how far we have came in one year and also to remind people to not take for granted that your kids came run, jump, play, and just enjoy being a kid-they don't have to worry about needles and hospitals and being sick. Don't take for granted their health. When that's taken away and their smile is lost,  you learn to cherish the special moments that much more:)