Day 55

For a day that started out good, it ended with Kennedy screaming in pain for nearly an hour. 

The back pain that plagued yesterday subsided enough in the morning that we almost forgot about it.  K had an hour play-date with Jackie from 9:30 – 10:30 in the morning.  Gene and I both went to work and I headed downtown to have a lunch meeting with an industry colleague (thanks Erica!).  Throughout the day, K would call me and tell me she was nauseous or had pain but it was all manageable, nothing that lasted or was extreme.  Gala didn’t know about half of the calls but K called me at least 7 times between 12 – 4.  We had a lot of mommy-daughter chats throughout the day.

I got home a little before 5 and gave K some Tylenol and we took a nap together.  When Gene got home, we both got ready to go to a much-needed hot yoga class.  All seemed well so we left K sleeping.  Gala and grandpa were at home to watch her.  When we got to the yoga studio, Gene got a call that K was in severe pain and wouldn’t stop crying so we left before the class even started. 

When we got home, I gave K her meds – Dex (steroid), Ranitidine (stomach) and some Tylenol with Codeine (pain).  She seemed okay; we were massaging her arms and legs and applying ice.   Then all hell broke loose.  She started screaming in pain.  She thought warm water might help so I jumped in the shower with her but the pain didn’t stop so Gene took her out and held her.  She started screaming at the top of her lungs and it didn’t stop for nearly an hour and there was nothing we could do.  Her arms, legs and back hurt.  She couldn’t walk. I guess this was phase 2 of yesterday; all she could do is clench, hold on to Gene and scream.

We paged the doctor who called back to tell us this was all normal.  Really???  Normal???  All the while we were on the phone she heard Kennedy screaming and crying at the top of her lungs.  The only relief she suggested was aspirin.  She noted that the Tylenol with Codeine wasn’t helping the Dex pain, only the Vincristine pain.  The aspirin should help the inflammation caused by the steroid.  We have no children’s ibuprofen in the house because it is normally a no-no with chemo but since her platelets were okay at the last visit, she approved it.  I ran out to CVS while Gene stayed with a screaming K.  I was probably gone 15 minutes and when I came back to the house, she still hadn’t stopped.  It was hell for her, for us.

When she was able to calm down enough to take the ibuprofen, it helped enough to buffer the pain and now things are a bit more normal.  I’m still worried about later tonight and tomorrow, especially after we have to get her the Dex.  She has one more day of this round of steroids and I hate that I have to give it to her.  I asked the doc if it was a must and I was told “yes” – it’s part of the “cure”.  I’m scared for tomorrow if this was the reaction today. 

It’s amazing and terrifying to think we are only on day 55 and there are 857 days of treatment left (my calculation in an earlier post was incorrect).  I hope today was the worst of it.   One day at a time.