We had a rough day. Rebecca was all set to head to the SIR treatment room when the news came that her platelets were too low for the procedure to be done safely. We’ll be spending the next few days doing various tests to try to understand the source of the platelet problem and state of the liver.
Rebecca battled through a few weeks of rather severe nausea and pain in December. We finally figured out that the oxycodone was causing the nausea. We switched to dilaudid and the nausea has largely gone away, which makes a big difference. The pain is intermittently bad, but basically under control. She has shortness of breath, some swelling in her legs, and a somewhat distended belly, all of which are a bit uncomfortable but not debilitating. She can be reasonably comfortable lying on her back most of the time and getting up for meals and a bit of walking. In our travels to two hospitals today we needed to use wheelchairs to keep the flank pain from flaring up. The pain meds sometimes make her a bit loopy — she’s been having strange dreams.
The situation is getting quite complicated, requiring balancing risks of bleeding with risks of clotting, risks of tumor progression with risks of inducing liver failure, and pain management with mental clarity. We’re glad we have each other and the support of so many friends.
Oh, how frustrating. Rebecca, I keep wishing you could go to the body store and trade in for a new one. You’re in my thoughts.
Love,
Penny
Rebecca — I think of you and Josh 10 times a day and promise to follow each thought with a prayer. This is tough. So glad the nausea is abated but pray the abdominal/flank pain discomfort can be eased. xx oo Lisa
Rebecca dear, and family, I’m so sorry, so sad, to hear the platelet counts are too low for SIR to happen. I know you are hugely disappointed. I’m sad to hear of the discomfort you are feeling as well. As always, sending big healing hugs and prayers. love, Kim
Rebecca,
You probably don’t remember me, but I am the administrative person for the Child Fatality Prevention Team for Orange County. I just wanted to write to let you know that for the past year I have thought of you often. Each month I check your weblog in hopes that it will say you are well and will be attending the CFPT Meetings again. Until then, I hope God continues to give you the strength to keep fighting!
Susan Wagoner
Rebecca-
We are praying for you each day.
You and Josh are truly an amazing duo! We hope that encouraging news will soon come your way and that you will be able to embark on this new treatment.
We are sending love and lots of hugs to you and your family and wishes for some peaceful days in this New Year!
Carrie
Rebecca,
I’ve been thinking of you often; I still wish I knew the right words to say to make this whole ordeal go away. Would that it were that simple! Your spirit and courage are remarkable; and I’m so glad you have such an amazing family and support to keep you going.
xx oo
Love,
Adrea
Yes. Sometimes the wisest thing is to be patient and wait till it is obvious what to do next. I wish you clarity to make the best solutions. I love that you visited your dad, please give him my love. And I so much L O V E the picture I have of you and josh together in my mind. I couldn´t think of a more capable or loving match. If anyone can do this…its got to be the two of you.
Denmark sends 12 points (max score)
Love from Denmark
holding you all in my heart/mind today, even more deeply.
love & care,
Scott
Rebecca,
We love that you keep fighting but get your rest, too. I think of you often and hope the news gets better. Please let us know if there is anything we can do. Give Jacob our best, too, as he gets his treatments. Much love, Eliana
You’re deep in my heart and always in my thoughts and prayers. Lots of love, CJ
What a disappointment. It was wonderful to read about your trip to Florida. Glad to felt up to taking it. We’re hoping 2009 will look up in many ways, and you are at the top of our list. Love from us all.