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!
