Life

Here I am again! Apologizing for not keeping those who care up to date. Avery is doing great! We went in again the very end of June for her scans.

First thing we did is go up to the lab for a blood draw. I have a bad fear of needles so I tried to be as calm as I could be for Ave. She did so amazing! She held still and there were no tears.

Waiting with Aunt Caitlin in the waiting room.

After scans, we headed straight to imaging where Avery got her skeletal survey. This is the big one! I stood by the computer monitor when I wasn't by Avery - which in itself is a miracle! The first 3-4 times we had this test done it was traumatizing to say the least. Avery was too young for me to explain what we were doing and all she knew was that she had to be stripped down to her underwear, lay on a cold hard table, and have complete strangers holding her down. She would scream and kick the entire time. After each x-ray an image would pop up on the computer monitor where a technician would check to make sure it was correct and send it to the radiologist who would look over it for signs of LCH.









I watched image after image go through and really paid particular attention to her skull. This is where she had a flare up 6 months ago. I was SO SURE I could see lesions (because I'm an expert right??) I mentally prepared myself for us to go up to clinic and hear the word "treatment" again. I of course, was devastated - but I was not going to be blindsided again like the last time. We stopped to get lunch in the cafeteria while we waited for doctors to go over her scans.

She usually gets whatever she wants when we are there. Can ya blame me?? :)




We headed up to clinic where she had her usual weight, height,  blood pressure and temperature taken and we were taken back to hear the news. Doctor walked in and said, "Everything looks great. Come back in a year." I about fell on the floor!! I guess it teaches me right for thinking I have a medical degree or something. :) We were so ecstatic. Here's to hoping all this becomes a distant memory for her.

 I told her to give me her best "No LCH face!" 

Here are a couple pictures of Avery lately

Started her second year of preschool and is LOVING it! 

Now has a baby sister and they adore each other! 

Diagnosis

Yep. I'm still here. I know many people have stopped reading and that's ok. I haven't been good about posting and life always seems to get in the way. This blog has turned into something that will just hopefully help me remember anyway.

Today I realized it's been two years since Avery was diagnosed.

Since then Avery has had:

22 rounds of chemo

22 rounds of steroids

30 port accesses

6 MRI's

1 CT scan

1 Lumbar Puncture

1 bone marrow biopsy

9 skeletal surveys

4 ER trips

As for news since last January…

When she was done with treatment we were told to come back in three months to make sure she was still doing good. I remember having the worst anxiety the week leading up to it. LCH has such a high recurrence rate and I was terrified of hearing that she would have to go back on treatment. They told us Avery only had about a 20% chance of reoccurring. Pretty reassuring, right?

Her skeletal survey and MRI came back with the news we were hoping for. She was still disease free! They even told us we wouldn't need to come back for another six months!

Six months later we came back for another skeletal survey on October 22nd. I was still a little worried about it, but not nearly as much as I was the first time. Thomas had gotten the morning off of work and came up to the hospital with us. They don't let you in the rooms during a skeletal survey if you are pregnant and I wanted someone to be with Avery. After the scans we headed up to clinic to get the results. We were taken back into the clinic room and were seen by the resident. After that we waited… and waited… and waited. The doctor came in to tell us he would be right with us and we waited some more. At this point I was started to get annoyed (you'd think I'd get a clue that they were acting weird!) and just wanted them to come in so we could go home.

When the doctor finally came in they told us that Avery had a new skull lesion on the left side. Her last lesion was on the right. He told us to come back in three months and if had gotten worse or she had more we would resume treatment. Luckily, unless they get really bad she will only have to take a daily medication at home.

I can't really describe what it felt like to hear the words again. Just being able to say that her LCH was gone for the past 9 months was such a huge weight off my shoulders and now I can't say that anymore. It's just so discouraging to know that no matter how many times she goes on or off treatment that it can always come back. Her next scan is on Wednesday - three days before her Chemoversary! Hopefully we will get the news we are hoping for and she can continue to be a happy and healthy little girl. 

Avery and her new baby sis!