A Day to Breathe


Can I go back to Colorado now?

I can tell you with all certainty that surviving scan week is a monumental task not to be taken on by the faint at heart.  This is not a sprint to the finish, but rather a slow crawl to a never ending half-way mark.  Actually, that is what every day in my life is like.  There are no more sprint days.  I am the walking, talking, living example of taking life day by day.  Anyone who knows me well can attest that this type of living does not fit my personality at all.  Who says you can't teach an old dog new tricks?


 When you sign on as a St Jude patient in the SJMB03 protocol you are given a card that details what your life will look like for the next 5 years and beyond (in our case 13 years).  Wednesday was our first day of pre-scan visits.  Lucy had lab work, an ECHO, and EKG, a endocrinologist visit and then audiology.


Everything went well up until the audiology visit.  Nothing that happened came as a surprise but we are all still trying to cope with the news.  We had reason to believe that Lucy was suffering from hearing loss and unfortunately our fears were confirmed.  What we didn't expect was that the hearing loss was in both ears and it was substantial enough to require hearing aids in both ears.  Yeah, huge shocker!!  You know, for many people this would be devastating news.  For some, it is the worse news they might ever receive about their child.  For me it was almost a relief.

Throwing animals in the sound proof chamber.
I know it may be hard for you to understand but I left the appointment feeling glad, not sad, about the hearing aids.  For once in this journey, Erik and I are able to do something to help Lucy.  Every decision has always been made for us.  We have been at the mercy of doctors, nurses and radiologists.  We feel blessed to be able to help her hear better.  Do we want her to wear hearing aids?  Well of course not.  No one wants that for their child.  But do I want to give her every advantage in learning to read and spell?  Yes!  Absolutely.

Her hearing loss is not permanent, thank God, and is caused by damage from "severe sinus disease."  Those are the words we received yesterday, after "wonderful scans."  I know I have whined a lot about Lucy's sinus infections but I clearly had a reason to.  It's been 2 years since her sinuses were destroyed by radiation.   Lucy has had set back after set back, all related to her sinuses.  Hearing loss just happens to be the worst of it.  She will go next week to be fitted and hopefully she will begin hearing better in a few short weeks.

Lucy in the breathing chamber.  Tests are done to make sure that chemo did not damage her lungs.

Thursday came and as if we didn't have enough on our plate, Lucy started screaming of a headache before we left the house.  She was also really tired and slept the whole way to Memphis.  She continued to cry through her psychology appointment and like any good mom I told her to suck it up.  Yeah, mom of the year here.  I just assumed she was anxious about being at the hospital and was upset because she was missing art lessons that day.  When she vomited all over herself and the psychologist's floor, I became a little worried.  Headache, fatigue, vomiting   Those are all tell-tell signs of a shunt malfunction.  Thankfully, they are also signs of a child being NPO (no food or drink) and taking a wad of medicine on an empty stomach.  

playing the iPad with dialated pupils and a bad attitude
After we got checked out in E Clinic and cleared to go on with our day, it was time for the second dreaded appointment of the week.  The ENT noticed that Lucy's left eye was turning in and we had to get it checked out.  Eye exams at St. Jude are very long.  There are so many stones to turn over when you are dealing with anything related to cancer.  At the end of the exam, the Dr. (who had seen Lucy at LeBonheur when she lost her eye sight the second time) concluded that the eye was not turned in.  Rather, it was the shape of her eye socket and a generalized fatigue on that side of the body that made the lid droop.  Lucy did, however, fail her distance eye exam.  We are going to wait one month and test again to make sure that she wasn't just fatigued from the trauma of the day.


Daddy met us right before Lucy went back for sedation.  She was so excited he made it and she held on to him until she went to sleep.  Yesterday was the first day that they have ever allowed 2 parents to go back for sedation.  I was always the one who got to hold her before she went off to dreamland.  Today, she wanted no one but her Daddy.  It was really precious.  He loved every minute, too.


Lucy cracked us up as she was getting her gas.  She kept laughing and wouldn't relax enough to fall asleep.  She had everyone in stitches!  Just like an addict, she had begged for her "sleepy medicine" all day long.  She was absolutely giddy with excitement when it was time to go to sleep.  Thank God for happy moments in the hospital.  

We are beyond thrilled with the news we received last night.  God has blessed our baby girl and our family with so many miracles.  I am always so humbled when I walk through the halls of St. Jude.  I am haunted by the memories of those that have lost their battles (but won the ultimate prize) and those that are clinging to life with every breath.  Perspective is something I have written a lot about.  Yesterday I received a very healthy dose of it.  We have our little girl and there's nothing more that matters.  

Thank you all for your prayers.  My God's mercy be on all of you and the challenges that you are facing right now.


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