Make A Wish

Here I am again. It's been so long since I've written and a lot has happened. Avery has continued to get her treatment every third Friday and as far as we know she has continued to respond to it. Not that long ago our main doctor went on maternity leave. The problem with the clinic where Avery sees her doctor is that most of the time we don't see her regular doctor. It has been really frustrating to go in and see someone different almost every time. It makes me even more frustrated that we weren't assigned the specialist in the first place. You would think that if someone is a specialist in LCH that we would be assigned to them when Avery was first diagnosed but we never were.

When our main doctor went on maternity leave, the fellow we see told us that we would "whichever doctor was there" when we came in. That wasn't ok with me. This journey has already been so unpredictable and I felt like I couldn't handle any more inconsistency. I requested that we switch to the specialist and was told that I couldn't because of "residential learning". I don't think I've ever been more angry. I was being told we couldn't switch doctors - that my daughter couldn't see the best - because the resident who has been following her case needed to learn. That was so backwards to me! I kept feeling like they were more focused on the doctors then on patient satisfaction. I was given the run around so many times and was never able to talk to the person I wanted to. Finally, the specialist and our current resident said that we could talk to them about the "pros and cons" of switching doctors when we went in next for Ave's chemo.

Once we got there they were very understanding to our situation and the resident we had been working with told us how much she loves Ave and would love to keep working with us but if we really wanted to switch that we could. We agreed to stay with our current doctor until the end of Ave's treatment and the specialist agreed to see us regularly if Ave happens to relapse. The specialist also talked to us for almost 2 hours afterwards answering all of our questions and Thomas and I felt so much better about everything. We do know that Avery has a high chance of relapsing but the specialist said that he's almost never seen it get worse - that is a blessing! One thing that is very discouraging is he said we are never really "out of the woods" with this disease. I've heard a lot of different things, one of them being that children essentially "grow out" of the disease by the time they are 10 but the specialist says otherwise and I have met a few adults who are still dealing with it. Hopefully, this will be it for Avery and we will be done after her treatment.

On another good note, they will be pushing back her tests another month. Normally, every three months we are expected to go in but the doctor told us they wouldn't change any of her treatment even if her scans did look different.

Here we are at her appointment. Clinic is great because they have SO much for the kids to do while they get their chemo.

Avery got croup over thanksgiving and we ended up in clinic for a fever. Every time she's had a fever we've ended up in the ER and we had such a better experience this time! It was early enough in the day that we could go to clinic.

Another exciting this is that Avery has qualified for Make a Wish! When our social worker first referred us, I really didn't have any idea what to expect. Avery has been SO spoiled by them! We first got a packet in the mail with a special key in it explaining that we needed to bring that key to open the special wishing room. When we went to the wish building they had a special plaque type thing with a large star and Avery's name on it.

Next they took us upstairs to play the wishing game. Before we played they gave Avery this cute bag full of toys for her! There was a Make a Wish coloring book, crayons, a princess movie, a bike bell and tassels, and a Make a Wish barbie! I thought that was so cool I wouldn't let Avery open it. It's stupid because she will enjoy it the most now but I just kept thinking… How many people have a Make a Wish barbie?? That is not something you can buy. :)

 Avery was really too little to get it so they asked her four questions. What do you wish to be, have, go, and see. And guess what she said to all of them?? Ariel. That was her only answer! So we filled out a paper with two wishes her first and second choice. They have you do two different choices in case the first choice isn't approved by the board. Next we got to write down something we wished for Avery and to put that in the wishing room also. 

Then Avery got to go to the special tower and open up the wishing room with her key.

The wishing room wasn't working when we were there, normally it is all lit up with different colored lights but when you walk in there is a waterfall and a cone type thing in front of it. Avery went to the back to get the top of the cone and put her wish in it and then walked around the waterfall to get to the cone so she could put the top on into it. After she did that we all read our wishes to her and took pictures.

It takes about six week for wishes to be approved but they called us after four and told us we were going! I was so excited! We got to plan a swim party for Avery to tell her that we get to go. It was so fun and Avery absolutely loved it!