This little sweetheart is looking good and feeling good. As of today I can declare that Lucy is a different child. She feels better today than she has in over a month. It thrills my soul and gives me so much hope. I just wish this was the end of it. But its not, so we will take joy in the good days and savor each moment.
I feel as if I have so much to say. So many updates. First of all, at the time of writing Lucy is 40 hours fever free. She had to stay free for 48 hours to be able to go home. Let me just go on the record to say that if we don't get discharged tomorrow morning there will be heck to pay!! I am ready to get my baby home and have our family back together again. Being apart from Ella and Jack is starting to take its toll on all of us. Ella left here tonight sobbing because she just wants to be with Erik and me. I, in turn, spent a good ten minutes crying as well. It's amazing how my emotions still swing from high to low in a split second. One minute we are praising God for the wonderful day Lucy has had and then in a moments change I am questioning how a God of love and mercy could allow an innocent child to suffer. Not only Lucy, but Ella and Jack too. Theirs is more of an emotional turmoil while sweet Lucy will literally be turned inside out with suffering at times.
I have to force myself not to dwell on those questions. Its a dangerous path to head down to be honest. A path both Erik and I have been on too many times. You can begin to think some pretty dark thoughts. One of my more "not-so-inspiring" days was this past Thursday. It was Lucy's first day of radiation and Erik and I felt as if we had just fed our baby to the lions. Half of Japan is running away from radiation and here we are making a purposeful decision to expose Lucy to it for 33 days. But what do you do? She can't get well without it so we don't really have an option. Ugh! It sucks. No parent should ever have to make this decision. But right now we are praying fervently that God will hedge Lucy with a mighty shield of prection that will limit the harmful side effects of the radiation. We are pleading with God to keep her healthy and safe.
Lucy has completed 2 radiation therapies. 31 more to go! The countdown to our 4 week break has begun. Speaking of our break, I have already started to pray that Lucy will be healthy enough for us to do something fun as a family. Maybe a trip to the Smoky Mountains? Lucy has also been qualified for a Make a Wish trip, so that may happen then depending on what she wants to do. It's kind of funny talking to her about it, though. A 5-year old sure has no concept of the world. I asked her where, in all the world, she wanted to go. Know what she said? "The lake house." God love her! The lake and the swimming pool are totally off limits this summer. I'm not sure how we are going to do that with Ella, but due to Lucy having the central line she can't risk the infection. We will chalk this summer up as a loss, but can't wait until the next one! We should have lots of celebrate.
Physical Therapy is still going well. Lucy fights it, but has learned that its not an option. It amazing how much stronger she has gotten. They have provided us with a small walker for her to use for stabilization as we practice walking and on Monday she will be fitted for a temporary brace. The fear is that as she is regaining the strength in her legs she might hyper extended and pull a muscle or damage a tendon/ligament. She still has some hyperflexion in her right knee that will improve with time. I'm still convinced that getting her home will be the best PT around. Keeping up with Ella, Jack and her friends is going to provide all the stimulation she needs to get well.
Coloring--sitting by herself.
Working on the stability ball
Growing magic capsules with Grandma
On a fun note --I knew this post was going to be all over the place-- Lucy has left a permenant mark on St. Jude already. Literally. St. Jude just created a new garden and allowed families and staff members to paint bricks. Rebecca, our sweet friend whom Erik worked with at St. Jude for years, painted this for Lucy. I was moved to tears when I saw it outside.
As you can probably tell from this post, our emotions are still on a roller coaster. I can handle the emotions, as long as Lucy's health can keep a steady pace for a little while. I know we are in for ups and downs, but I am praying she remains well during radiation so that we can spend as much time at home as possible before we move on to the Chemo phase of treatment. We have been told to prepare to spend more time in the hospital during the 4 months than at home. It is going to be so hard and I already get anxious thinking about it, but once again I have to choose to live in the moment. And right now the moment is
"The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold. I call to the LORD, who is worthy of praise, and I am saved from my enemies. The cords of death entangled me; the torrents of destruction overwhelmed me. The cords of the grave coiled around me; the snares of death confronted me. In my distress I called to the LORD; I cried to my God for help. From his temple he heard my voice; my cry came before him, into his ears."