I've been following Lily's story for years. Her grandmother Carol is a blogger friend--her whole family, the Shaws, blog. Recently, Lily relapsed after over 5 years in remission (she's 15 and active in sports and doing teenager things, with tickets and hoping to see Adele). This is very rare after 5 years in remission. This was written by her mother, who posts on Facebook.
Well, not to sound like a 13 year old but today has SUCKED!!! It started out fine. Lily and I walked some and she did homework. Then she and I tossed the volleyball around which was fun.
Then she got her chemo. PEG - L- Asparaginase. Earlier this morning the doctor had gone through all the possible side effects especially the risk for anaphylaxis (that is where you have an severe allergic reaction to the point the airways swell making it where you can't breathe). We weren't expecting any reactions since she had a couple PEG doses last time she was in treatment and one two weeks ago. However he warned sometimes they see reactions after a lot of doses.
They started the chemo around 12:30 and within 20 mins I noticed a rash and she was coughing a little. Then literally in a matter of minutes it was a true medical emergency. Doctors and nurses literally came out of the woodwork it seemed. It was extremely scary. She was gasping for breath and couldn't feel her legs and arms. She couldn't talk. They were finally able to get her breathing clearly again after high dose IV Benadryl, Epi and hydrocortisone through her port. She is already on high dose steroids as a chemo so that also helps. She has rested and not felt great the remainder of the day. Not only is the medicine making her feel bad but it was also terrifying. This evening she started having a rash and some heaviness in her chest again so they are continuing with the Benadryl and watching her really closely.
So she won't be able to take that chemo. There is another chemo they will give in its place. The downside is instead of one dose it requires 6 doses. They don't feel she got much of today's dose so they will repeat the entire dose of the other chemo. In order to make up for this dose she will have the other chemo now Friday, next Mon, Wed and Fri and the next Monday and Wednesday. PEG is a regular part of treatment so we will have to do two weeks of three times of week for every dose of PEG she should have gotten from here on out. Complicated however worth it not to have a similar incident.
So they have said we are definitely here until next Monday and then they will reevaluate possibly letting her leave as long as she doesn't have any additional reactions and her blood counts start to recover.
Also, today we found out definitely that she won't be able to go to the Adele concert. Phillip had bought tickets for my birthday back in December for the girls and I--so sweet. We have known since we found out Lily relapsed it would be extremely difficult for her to be able to go, however we were holding out hope that her counts would start to recover and we could maybe get an exception with a mask (we have suite tickets). However, today Dr. Friedman said she didn't think there was anyway we could pull it off. I think we all knew that would be what happened however I had prayed her counts would recover so we could pull it off. We have looked forward to it so much. So I think Phillip is going to take Sophie and maybe a friend and Lily and I are going to listen to Adele's album in her room. However, it was yet another blow of something she would miss out on due to this.
So that is about it. Oh, steroids have kicked in big time in addition to the meds today, so its a hungry, sad, angry time (cancer moms know what I mean). Needless to say Cancer SUCKS!!!!!!