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. 


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