3/6/19 update

The past week has not been much of an improvement.  Rainier had a few more trips to the ER.  High fevers, hives, and now a pain that I would explain as bone and joint pain.  Last Wednesday he said his wrists were feeling sore.  That progressed into a stiffness resulting in crab hands.  Which has now cleared up.  Then his legs started hurting.  They hurt when he moves them or you touch his skin.  It has been concentrated in his calves and lower legs.  This happened before during the induction chemo phase when we were in Vermont.  It is not clear if it is from one of the chemo drugs or what is causing it.  We are meeting with the doctors and trying to figure it out.  Rainier’s leg pain was so great he ended up in the ER with his papa where they prescribed him strong pain medication.  I have a lot of reservations about Rainier taking these strong medications.  And also recognize that he would not be prescribed them if he did not need them.    In talking to the doctors here at Seattle Children’s it is clear they do not like to use them unless it is very necessary.  He was in so much pain he couldn’t walk for 3 days so this counts as necessary.  

Luckily after those three hard days and a long warm tub, one more ER visit for a fever of 102*, he is feeling a lot better.  His movements are stiff and guarded but he can walk on his own.  His hives have not returned for 24 hours as well which is something to celebrate.  

Yesterday we had an appointment with Rainier’s doctor to discuss pain and the next steps of treatment.  We are basically cycling back to a similar round of chemo that we did the first two weeks of being in Seattle.  So hopefully that will go as planned with no complications.  The pain we will continue to monitor.  There is no obvious reason for it to be happening.  There are many small possible reasons, side effects and whatnot.  One thing we learned were the results of how Rainier’s body reacted to the chemo desensitization we did in the ICU.  His body is not showing activity of the chemo drug so the doctors can conclude that his body fought it off (possible fevers and pain?) soooo this means we go back to plan B which is the alternative chemo that has been in a national shortage.  We have secured his needed dose of the medication which is great.  Less great the medication is six muscle shots for one infusion.  This is done three shots every other day for two weeks.  But we will cross that bridge when we get there aided by lots of ice packs and numbing creams.  At some point we may also need to make up the dose of the first drug that his body has rejected.  I think that gets worked in down the line later on.  

I put a link to the oncology groups website on the first page of Rainier’s story.  If you haven’t looked at it yet, check it out.  The site has lots of information about his diagnosis, chemos, and his treatment path.  It has been really helpful for me to read about what we will be expecting as we continue treatment.  

Thanks to everyone who has reached out recently.  It has been really nice to be reminded how large our community is. 

Lizzie