I remember thinking to myself and commenting to Tracy a couple weeks go, how easy it was to keep my spirits up. Because Emily's spirits are low now, the real challenge for us has started.
Today we had an appointment with Hematology to take a look at Emily's clot. From the exam it looked like the clot has not grown which is what we wanted to see. Emily's level of Lovenox is at a thereaputic level, which is also good.
Last night was maybe the toughest night I have had since Emily's was diagnosed. She is extremely bloated, she really can't get in or out of bed without significant levels of help. She has also developed Neuropathy, or pain in her extremities. She can only put weight on her tippy toes. We are using Haley's stroller to wheel Emily around the house. I was expecting this leg pain would be around for a few days, but we were told this could go on for months if not years. She is in so much pain that we got Codiene tablets for her to control it when she wants.
Tracy and I are pulling every last bit of energy we have, just to cope and to be there for Emily. I know I will make it through 2 years of this, but only if I take it day by day, and even that is becoming a real challenge.
Subscribe to:
Post Comments (Atom)
Posts
9 comments:
If a day at a time becomes too much, then step down to hour by hour. This is how we survive sometimes. It's okay to have low spirits too. No one expects you to keep your spirits up all the time. Have a little pity party, get some balloons and cupcakes even. I promise the party will end.
I thought that I was praying all day before. Now we are praying even more for this sweet one and all of you. This is so hard for all of you sweet folks, especially Em.
I hope and pray that Em has a better night tonight, and that all of you can get more rest.
One moment at a time...
With all our love,
Auntie Diana ~^..^~ and Uncle Marty
Chris, I wish there was something I could do to make it all better for all of you...Emily most of all.
I'll have my women's prayer group continue to pray for healing for Emily and strength for all of you.
Kim S.
Geez- I don't even know what to say - this totally "sucks" comes to mind and a whole lotta other things too. It is hardest that Emily is facing such physical issues now and as a parent I cannot imagine what it takes to deal with that. This is a good lesson for all of us supporting you to remember that we should take it one day - one morning- one hour at a time. That is okay. Sometimes when the Drs. say a side-effect could last for "years" - I would let that go in one ear and out the other. You cannot face all of this and process it in your mind "to go on for years". Take it a little bit at a time - it might be the healthy way to cope right now.
Thinking of you -
Jessica, John and family
I am very sorry to hear of all the struggles this week. As I follow your blog, it's hard to believe that it's only been about a month since this all started. You have had to deal with so much in such a short time span. It's clear, that even though the pace of events would say otherwise, this is marathon and not a sprint.
Remember to never feel guilty about leaning on others to help get you through. We all want to help out for as long as it takes.
Brian, Belinda, Julia and Sydney
I really don't have any words that can wrap around these tough times. It's 2am here, but I couldn't go to bed without checking to see if Em had a better day today. I started to cry when I read your post, and then I tried to write but couldn't, and then I prayed. I'm not the best religious person out there, but I prayed that God would hold you in the palm of His hand and ease Em's pain, and yours and Tracy's too. I had this image in my mind of just pure love supporting you and holding you up. Sorry, I don't mean to sound crazy. But please know that there is a big group of people out here, checking in on your blog, praying, hoping, thinking of all of you.
Kim Z.
We are so very sorry to hear that Emily is having such a rough time. We are glad to see the clot has not grown but so totally saddened to hear that Emily is in so very much pain. It must be so hard to see your darling daughter in such pain. We love you guys and are thinking of you all the time.
Pepper family, you are so strong and have struggled so hard together to help Emily beat this terrible disease. Remember that you and all the people praying for Emily are a great power that does, indeed, help her. Day by day, moment by moment...
Love, Aunt Ann & Uncle Chris
So much love and so many good wishes are pouring in from all around the world. I hope they lift your spirits and help you get across each bridge that you have to cross. Take each step, one by one. Live from moment to moment. Remember to breath. Just know that we are all here for you. Sending big hugs, Jane.
Post a Comment