10.02.2011

What Happens Next

Several people have asked, so I thought I would respond quickly.  Lucy was discharged from the hospital Friday.  We are here at the Target House and will remain here for the next few weeks (up to 2.5 weeks).  Now, if she gets a fever we will go back to the BMT floor and remain there until her ANC drops and climb back up to 500.  We are predicting that either way, we would be home around the 14th or 15th of October. 

Once her counts climb above 2000 and stay there for 2 days in a row, Lucy will be transferred from B Clinic back to E clinic, where our wonderful Dr. W is.  Dr. W will have some testing she will want to do (procedural) and we will go through the gammit of hearing, eye sight, PT, OT, etc. evaluations to see where she stands. 

Another huge hurdle is eating.  They will not release us until Lucy proves she will and can eat on her own and at least maintain her weight.  Honestly, she needs to gain at least 10 pounds.  She is so, so skinny.  This is one of the hurdles I am most worried about.  Baring a few nibbles here and there, the child has not had solid food in over 6 months.  The nutritionists say it happens like magic.  That kids end course 4 and a few weeks later just start eating again.  I am praying she is right. 

Then, the day of Scanxiety (term borrowed from Momcologist Hope) (yep, I am an official Momcologist). October 14th is a huge day for Lucy and all of us.  She will have her last on-treatment MRI and it will dictate what happens next.  Assuming that the MRI is clear, or at least no signs of new cancer growth, we will be put on the discharge schedule.  If it is not, well, we aren't even going to think that way!

After we get the all-clear from the MRI we will be super close to discharge.  Once again, it will all depend on Lucy and her ability/willingness to eat.  We need her off the TPN to go home for good.  When Dr. W determines we have reached that point, she will pull her central line.  And when I say pull I mean pull!  Just right there in the clinic, like its no big deal.  Lucy will need a tranqulizer!  She hates for anyone to look at her central line, much less touch it. 

Lucy will have to remain cancer free for 5 years before they will declare her in remission.  Even then, I know that we will always live with the fear and knowledge that this horrible monster could return again.

After that....well, that's when we try to start rebuilding our lives.  We try to start living without fear, without hesitation and with LOTS of prayer and faith.  It just may be the hardest step yet.  Lucy will have months and months of physical and occupational therapy she will have to endure. We will look forward to getting her back into school and watching her start being a 5 year-old again.  Lucy also has an awesome Make-a-Wish trip coming up.  We are thrilled about it and can't wait until she finds out!  That will likely happen the first of December. 

I will continue to blog, just as I did before I had a child with cancer.  This blog has and will always serve as a scrapbook of our family's life.  Each year, I print a hardbound copy and proudly display it on my coffee table.  While this year's scrapbook will most likely be the largest and most cherished, I look forward to many, many years of documenting my children's adventures and accomplishements and also the fond memories between Erik and I.

I want to invite you to join us on our adventures.  Please feel free to continue to follow our journey, as we learn to live again after surviving pediatric cancer.  My hope is that you will find a family that has a new-found lease on life.  A zeal for living that maybe wasn't there before.  And as always, a love for God and greatfulness for His endless blessings and mercies. 


post signature

14 comments:

  1. You're so close, yet...so far away! I'm still praying for Lucy and haven't forgotten about you! Some of the videos that you have posted lately have broken my heart! =( I knew the road was tough, but it really hit me just how tough when I saw those videos! I'm praying for you're family and precious Lucy!

    GO LUCY GO!!! I love you, Lucy!

    Love,
    Allison

    ReplyDelete
  2. Continuing to lift up Lucy in this home stretch!!

    ReplyDelete
  3. I second what Allison said. I have fallen in love with your family and especially with Lucy. What a brave little girl she is. I knew what you guys were going through is horrible but those videos were eye opening. I was in tears and it was supposed to be happy. Thanks for posting them. As always praying for your family!!

    ReplyDelete
  4. I second what Allsion said. I have fallen in love with your family and especially with Lucy. What a brave little girl she is. I knew what you guys are going through is horrible but it didn't really hit home until you posted those videos. I was in tears and they were supposed to be happy! Thanks for posting them. Praying for Lucy and her appetite and the rest of you guys.

    ReplyDelete
  5. Crying tears of joy for your family and praising God for bringing sweet Lucy this far! You all will remain in my prayers.

    ReplyDelete
  6. Thanks for laying this out. It seems like this next part would be hard...the waiting and not actually 'doing' anything. I will pray for her scan On the 14th and alsothat her appetite will kick into high gear! Your family's story is a testament to God and it's also my prayer that someone who has followed your blog will come to Jesus through lucy's story.

    Praying always for your family!

    ReplyDelete
  7. I just started following your blog but I have been reading older posts when I get time. I just wanted to let you know I will be praying for your little girl!

    ReplyDelete
  8. Still praying for your family!! Even though we live in the same big city, we do not know each other, but I feel so close to you since praying for your sweet Lucy! So proud of her and can't wait to hear great news in the coming weeks!!

    ReplyDelete
  9. Thanks for explaining this. :)I have been following you since the beginning and I am so happy to see that you have all made it through! :) I will be continuing to pray for you all and for 0 cancer!

    In Him,
    <><

    ReplyDelete
  10. I continue to keep you in prayer and think of your family often. I am looking forward to reading the updates on your family and seeing Lucy grow healthy and strong as the days go by. Thank you for sharing this journey with all of us...your lives are an inspiration to me ...so thank you. Big hugs to Lucy... (ice cream might be a great way to kick in that appetite! Hang in there, sweet girl!)

    Sandra

    ReplyDelete
  11. I wanted to tell you, you've been an inspiration. We don't know one another yet I see myself in you. I feel your real fear, your real desires and real moments. I pray for you as a mother, daughter, wife and friend. We pray for Lucy at our dinner table. Your faithful and humble dedication to the Lord has been steady and true making me admire you even more. I pray that you can get back to rebuilding your family and continuing to document the everyday life. Just another stranger praying for you but this time I wanted you to KNOW! :) Take care.

    ReplyDelete
  12. Wishing for miracles for you all..

    ReplyDelete
  13. I have followed your journey and have always had (and will continue to have) Lucy and your family in my thoughts daily.

    You have been so strong and inspiring through all of this.

    ReplyDelete